Levothyroxine >recommended dose

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Diagnosed hypothyroid >10 years. I have struggled all of this time to feel 'normal'. Drs have continually increased Levothyroxine to attempt to normalise TSH. Six months ago they prescribed 300mcg. The pharmacist queried this! I take it regularly, without food etc.  I am still symptomatic and free T4 & T3 still low. Anyone else on this dose without effect? 

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  • Posted

    I don't know if this will help any but I used to have a really good doctor and we took my dose (of Levo) from obvious hypo to a "perfect" dose where I felt normal. He said that if we missed the perfect dose and we kept increasing the Levo I would begin to feel hypo again (even though we were moving into hyper territory). He said that this would happen because one's heart begins to work harder beyond the critical dose and you begin to feel tired due to that. He likened it to a car idling too fast, he said that even though the car wasn't running you are wearing out the parts just because idle is too fast.

    At 300mcgs I think you might have gone beyond your critical ("Perfect") dose.

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    • Posted

      Hi Jean,

      Yes if you go too far or hyper for too long. You have to monitor your heartbeat very frequently (t least twice a day) and get back to the doc fast if you go too far into hyper. (Don't make an appointment for 2 months hence. - get back in there fast)

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    • Posted

      Well, for myself: My basal pulse rate (first thing in the morning) was 60 bpm. When I went down to the supermarket (i.e. active) where I could take my BP, my pulse was about 70 bpm. I actually never saw a dangerously high figure but should my basal rise to 70 bpm and/or my "operating rate" increase to 90 bpm I would have cut back my dose immediately. The first percieved increase would probably have been due to my increased production of T3. The half life of T3 is between 4 and 24 hours depending upon which paper you read, so missing one day or reducing your dose to your previous dose would bring you back into safe range - and tell you that you are close to your critical dose.

      So, the paramerters:  I would say that any increase of about 17% should require a cut back. 20% should trigger a fast consultation with your doctor. In either case, drop  back to your previous dose. But keep measureing so that you know exactly what is going on.

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    • Posted

      Hi jean, am I right in thinking you are not taking any replacement thyroid hormones? And that your blood test results (e.g. TSH, T3 and T4) are all present without treatment? If so, it's more likely that you have hyperthyroidism and that the nodules on your thyroid are giving out extra thyroid hormones. I suspect that you are not being treated for it because of your other medical conditions (surgery to remove the nodules may not be an option because of your Long QT diagnosis). Being hyperthyroid would give you symptoms of anxiety (as would the natural response of worrying about all the other medical conditions you have!) It may be worth a trip back to your GP to discuss your options.
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    • Posted

      So LAHs your basal pulse rate is similar to mine: at 60=ok, above 70=over treated with thyroid medication.
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    • Posted

      Barbara

      The problem lies with being referred to an endocrine surgeon rather than an endocrinologist.

      As you already know an endo has diagnosed me with sub clinical hyperthyroidism due to low TSH , normal T3 and T4 and TPOAS being less than 33.

      He has highlighted the fact that the multinodular goitre can hyper-secret T3 and T4.

      It is mandatory that this is treated urgently.

      I saw an endocrine surgeon very recently who did not even bother to take blood for thyroid function and I had a very strong discussion with him about this. He walked out of the room slamming the door.

      I await an appointment with an endocrinologist rather than an endocrine surgeon who told me that under the NICE Guidelines that h is not required to treat a sub clinical hyperthyroidism. Pit he didn't do his homeweork properly and then he may have spoyyed that sub clinical hyperthyroidism is a seperate entity and it is mandatory to treat it.

      Jean

       

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    • Posted

      Sorry Kathleen, it was late at night and even as I was typing that I wondered if it was the correct thing to suggest. I haven't been in the UK for a long time and I was writing as if to a US following. Maybe if you do not have instant access to medical care you should be doubly vigilant when trying things out.
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    • Posted

      LAHs things are getting very grim in the NHS and I think the Government want to ruin it so it has to go private, but I think if this happens there will be a two tier system to start with. Things may them improve once it goes private, but in turn Doctors will have to work for their wages and pay for their errors. Patients too are not going to want or pay money to a Doctor who is not going to help them.
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    • Posted

      Barbara, I mis-read your question! Basically, yes. If your basal pulse rate increases after an increase in your medicatioin you are probably taking too much. Try splitting a pill rather than dropping one. Or look at the dose where you were too low then look at the dose which bumped your pulse rate up, calculate the mid point dose then sit down with a pencil, a piece of paper and half an hour's free time and calculate: given the pills you have, what combinations make that mid point. (you may have to miss out a couple of days per week to achieve your set point.

      I did this when I was on Levo, 125mcg was too low but the next standard up was too high (I was jittery and my pulse increased). I chose 130 as my new dose and found that 5 days a week on 125 and two days on 150 made 130mcg. As luck would have it, that turned out to be perfect and kept me well for 2 years. If all of your pills are the same, consider splitting one of two to drag the dose down.

      If you want, I can do this for you. Let me know your current (low) level and what level makes you jittery and I will calculate the combination that gives you a mid point - and then we might have to do it again if that mid point is too low or too high.

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    • Posted

      If the brand is changed then can this have an effect on the efficacy of the drug? Jean
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    • Posted

      LAHS, I really appreciate your very kind offer to calculate the dose I should be on. The situation has changed recently. Before I go into that though, it's worth a mention that for years I increased or decreased my dose of levothyroxine by a quarter of a 25mcg tablet (6.25mcg) by cutting it up.

      I've not been taking any levothyroxine since May 2015. I went to see a private endocrinologist who prescribed the NDT called Nature Throid which made my fingers swell up after just one half grain dose. I tried it a couple of more times a couple of days apart with the same effect, so I stopped it. I tried liquid thyroxine but that too made my fingers swell up after just one dose. I stopped it. I found out on 10th June that I am a feeble converter of T4 to T3. I have been on ThyroGold since mid June 2015. I think the higher ratio of T3 in the NDT suits me, like it does you. I got told yesterday by my (very supportive ) GP that the CCG (Clinical Commissioning Group) have refused my doctor's request to be allowed to prescribe T3 to me (even though he has prescribed it to me in the past) - the rules changed in 2012. I have an apointment with an NHS endocrinologist on 15th October 2015. Depending on the result of that, I will seriously consider offering to take part in a tv documentary about 'the great UK thyroid scandal' that is being mooted.

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    • Posted

      The reason I stopped taking levothyroxine was because I became intolerant to some of its ingredients. I think the main problem for me is the maize starch they put in it. I am intolerant to soya as well as other items. Unfortunately, maize (aka corn) or its derivatives (e.g. glycerol, maltose) are used in just about every manufactured food so I am having to use fresh ingredients and stick to meat, some fish, carrots, broccoli and cabbage - even for breakfast!
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    • Posted

      My private endocrinologist has prescribed the porcine (i.e pig) NDT WP Throid which like the bovine NDT ThyroGold (i.e. cow) doesn't have any fillers in it. At the moment ThyroGold (obtained without prescription off the internet) is working, so I'm reluctant to try anythimg new.
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    • Posted

      Hi Barbara, I think you made the right choice. Going from Levo to NDT was  like going from night to day for me. I just don't understand why doctors keep people ill by medicating to TSH.

      I was reading a research paper on dosing with mono therapy L-T4 once and a terrifying statement shocked me and doesn't leave my mind. It said, "The trick is, how to we medicate to TSH without killing the patient."

      Explains a lot doesn't it?

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    • Posted

      Yes, absolutely. That was a dillemma for me when my Levo brand changed 2 1/2 years ago. My Dr. and I worked for about 2+ years to get my dose "perfect". Then that patent (Forrest Phama) ran out and the hospital went to a different brand for thier generic. The dillema was that it would take years to find a brand which, at the right dose, would be right for me  - there are about 12 brands, at 2 years experimenting per brand, that's the rest of my life! NDT was the answer.
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    • Posted

      I researched intolerance tBarbara you will probably already know this but I thought that I would state that whilst doing some research into grain intolerance I discovered that wheat is an opiate and that people who are gluten and wheat intolerant are usually maize, corn, rye and barley intolerant as well.

      There is a condition called the gluten syndrome and also gluten ataxia.

      Unfortunately wheat is added to most fooodstuffs including soups, baked beans, Even gluten free products can contain traces of gluten as a cross contaminant.

      Jean .

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    • Posted

      Hi LAHs, crumbs! I would really like to read that research paper. Please let me know if you come across it again.

      Regarding NDT, I didn't really have an alternative - all the levothyroxine meds in UK have maize starch or glycerol in them and the private encrinologist thought NatureThroid was the most hyperallergenic NDT, so I was scuppered when I was allergic to that (it isn't, WP Throid or WB Throid is). Mind you, it was scary buying off the internet without a prescription and self medicating. Luckily I have a supportive GP and private endocrinologist, however the decision and the responsibilty was all mine. I am very aware it is difficult to be objective when one is both the researcher and the subject and they acted as very good objective sounding boards. I've learnt a lot over the last 24 years of having thyroid disease and in particular the last 9 months. I just wish I had known years ago that I wasn't converting T4 to T3 very well. I might well have avoided all the medical problems I now have (one of which is macular degeneration - make sure you go for yearly eye tests/examinations!) Thinking aboue endocrinologists should have known: as my TSH =170 on diagnosis it should have been obvious that my thyroid was completely broken and wouldn't be converting T4 to T3 and that all the secondary sources in the body that do so would not be able to make up the shortfall.

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    • Posted

      LAH &  Barbara:

      I know the feeling.  I tried so many of the different thyroid meds from 1987 to 2009.  NDT helped me and was a great replacement med.  I ran into a problem like LAH did. I was using a generic from Major Pharmaceuticals, and the patent ran out and it was no longer available.

      Funny even though I had some T4 in the tablet, the level would not rise. When I found Cytomel (Liothyronine) I came alive even more.

      It is a crazy game finding the right med for the right patient with the correct dosage for you.

      I am so glad that you both have what works for you.

      XO,  Shelly

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    • Posted

      Oh gosh, an endocrinologist missing a TSH of 170 is unforgivable. A mistake like that on many jobs would result in a firing (and probably the national news).

      If I ever come accross that paper again I will send you a link to it. And you are right about the eyes, mine have degenerated a little, but we can't solve everything I guess.

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    • Posted

      Hi jean, can you clarify which details you want? If you mean ThyroGold, am I right in thinking you have been diagnosed with HYPERthyroidism? If so, it is not the answer for you as it is a HYPOthyroidism treatment.

      Barbara

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    • Posted

      Hi Barbara

      Thank you for replying. Its OK I know that thyroxine is not the drug to treat a subclinical hyperthyroidism .

      When I asked for details it was with reference to the TV Documentary about the Thyroid scandal!

      I have just been advised that I have a few Drusens spts in my right eye. It is not the same as macular degenration - thankfully.

      Kind regards

      Jean

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    • Posted

      Barbara

      I am intolerant to maize, wheat, gluten, milk, soya , yeast, amaranth,

      What do you have for breakfast btw? I am at my wits end to know what to eat. Jean

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      Hi LAHs, I didn't mean to imply the endo missed the TSH=170, they correctly picked up hypothyroidism. They just didn't pick up that it would be likely to mean I had a problem converting T4 to T3. Mind uou did they even know about this back in 1991?

      The initial TSH value itself got buried in my notes and lost during computerisation. When clearing out, I found the notes and diagrams the GP wrote me at the time of diagnosis.

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    • Posted

      Shelley, LAHs, I'm really glad you've found what works for you. I'm pinning my hopes on the appt on 15 October 2015 with the NHS endo. He does if he wishes have the power to prescribe NDT! I'm hoping he'll prescribe WP Throid on the NHS as my health is costing me a lot each month: thyroid meds, gym membership, vitamins and minerals, Viteyes 2 tablets (for eyes), physiotherapist, organic foods ...
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    • Posted

      I make my own chicken stock by boiling chicken bones with water for 24 hours in a slow cooker. I use this as a base for vegetable soup. Often i eat chicken and vetetables for breakfast! I have just managed to reintroduce oats back into my diet so I've been having porridge made with oats and oat milk.
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    • Posted

      Barbara:

      You are so right about the fillers and the way the tablets are made.  They say "inert" ingredients but for some of us, we can't handle it.

      I have a problem with the FLU immunizations, since I have a sulfite allergy. I would get very sick after having an immunizations.  They do  now make a FLU shot without sulfites as a preservative. Sulfite is in wine also, so I can't have that either.

      Shelly

       

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      Thanks Shelley, that's worth knowing (sulphite preservative). I will be going to get my flu jab soon and this will be the first time since i became intolerant to so many things.
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    • Posted

      The tv documentary is about hypothyroid patients and how they are being denied the correct treatment when levothyroxine doesn't work.
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      Hi, what TV documentary and when is it on please as I would love to watch that. I am in the UK so might not get the right channel but it would be good to know if I am able, thank you
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    • Posted

      Panorama as thinking of doing a documentay on hypothyroidism and the difficulty of getting alternative treatments. I don't know any more details, not even if they have decided to or not. Tpauk might have an update.
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    • Posted

      Jean have just got back from being kept in hospital. My heart rate was in Afib all morning of my appointment withheart specialist and was exhausted in getting to the bus stop so had to ask for wheel chair to take me to the specialist, but to put it short I was sent to A&E and admitted. They refused to allow me to take my NDT in fact they have not given me any thyroid medication. They gave me Prednisolone and 3.75 Bisoprolol, but did not gave me any Bisoprolol this morning as my Pulse was too low, but of course sent  me home with it to take. They have not given me any T3 as the Endo wanted. Bisoprolol can hide symptoms of an overactive thyroid so it slows the thyroid down. Treating yourself  you could end up taking more thyroid medication to compensate and so tests would hide the fact that you were HYPER.

      As they have not given me any T3 would you simply take NDT and a little of the T4.

      This morning too they gave me Lercandipine. I simply do not think they know what they are doing regarding the thyroid.

      They did say both T4 and T3 were on the low side, but on Bisoprolol.

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    • Posted

      Hi Kathleen

      I was sorry to read all this. Can you recall what your heart rate was?

      Who advised you about your thyroid whist you were in  hospital? Was it the endocrinologist or the General Consultant Physician?

      Did the hospital indicate when you could resume NNDT again or do you think they are trying to get you off it because it is not their policy to prescribe it?

      In other words is it a sneakky way to stop the drug. If it is what will you do?

      Shelly may be able to advise re taking the drugs you inquired about. If you ask her nicely I am sure she will help you.

       

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    • Posted

      Kathleen thanks for your advice about bisoprolol and the msking of the hyperthyroidism. I think you may have a point there. I will raise th issue with the dr.

      I am taking Cardicor 1.25 mgms a day for Long QT syndrome. It can cause Pripheral Neuropathy , you be careful using it.

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    • Posted

      HI Jean at the moment BP is 153/77 and pulse is 58. Just before I started out from here to hospital BP was 131/97 pulse 91 , but pulse had been up in the 30's earlier on in the morning. In details sent home with me  they said it was  in AF around 30bpm. Another problem is if Bisoprolol is lowering your heart rate and you say climb a hill it needs to rise to cope with it, but what if Bisoprolol will not allow it.

      With NDT they will not advise as its unlicensed, but its a grandfathered drug and cannot be licensed. If a drug is licensed it remains the copyright of the firm who marketed it and once the licensed time ends other firms can then market generic versions, but NDT already has generic versions. On top of this a Doctors insurance only covers for licensed drugs and they will tell you they know nothing about it and so will not prescribe or advise on its use.

      I am going to persue the hospital pharmacy tomorrow.

      It was my Birthday today and I usually treat myself to a trip to Birdworld and if nice tomorrow and fit enough off I shall go.

      The problem is that they did not give me Bisoprolol today as my pulse was low but gave me a BP drug, but how does one know if to take Bisoprolol tomorrow. One thing is for sure that T3 is not what causes AF as the ENDO stated. I think every patient in that ward suffered from AF.

      They also injected blood thinner and was told again to concider taking a blood thinner. I also told them that Bisoprolol goes on to lower my pulse and BP, so they hooked me up to a bag of saline so two of those and perhaps a good thing that the cannula had to be removed and talk about bruises  AGH.

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    • Posted

      Kathleen

      Need to monitor your heart rate and let the dr know. Can you ring the out of hours up? OR in th morning ring your GP and ask for advice , you can ask them if they have received a fax or email fom the hospitl advising bout further management  as they did not specify when to take your bisop. In the meantime I cannot advise about NDt as i do not know enough about it. So I would try to contact he ooh and speak to a dr re your bisoprolol and NDT, tell them what youhave written here. Don't forget tommention the blood thinner. hy did the hospital give you a blood thinner? Are you taking warfarin bcause of the AF?

      Who is looking after your AF? Is it the GP or cardiologist? Have you got copies of ECGs or edical Reports to show these drs you have AF?

      Also in

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    • Posted

      Jean I used to be on warfarin, but the problem is in the state I am in I could easily have a fall and cut or injure myself, so do not concider it safe. The hospital injected a blood thinner to treat the AF as they appear to treat AF with blood thinners. This discharge letter is not very good as no mention of saline drip or the blood thinner they injected, in fact its a waste of paper. My phone number is not even correct. I presume my GP will be in charge now as the heart is his speciality.
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    • Posted

      Kathleen

      What was your INR?

      The hospital must have given you a blood thinner because you put yourself at risk by stopping th warfarin. Warfarin is safe if yoou kep the INR within the therapeutic range.

      Anyone with AF should be on earfarin to avoid blood clots.

      You need to ring the out of hours or 111 and seek medical advice. If you have bruising you need to let a dr know.  Blood thinners do not qffect the INR reading but they do thin the blood.

      You are taking a big chance stopping warfarin when you have AF.

       

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    • Posted

      Hello Kathleen:

      Happy Birthday and sorry to read of your heart problem and what you went through.

      AF can come from many of things.  Does your family members have it?  Have you ever had a heart attack and damage to your heart?

      If T3 was the cause, if you remove T3 it would go away.  From what you say about your BP you have Hypertension and that alone can lead to heart issues. 

      I am on just T3 Cytomel and I do not have AF or a fst pulse.  I know others on just T3 and NDT and they do not have heart issues.  I think your heart issue is coming from another condition.

      Stay well, Shelly

       

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    • Posted

      HI Shelly

      I suffered badly in childhood from the lungs and hospitalised 3 times for a collapsed lung and they seem to think I might have Bronchiectasis, but they appear now to do Xrays if I get admitted. There are other members on both sides of my family with heart problems, but going my the male members when they have indulged in smoking is not reliable, so it leaves my departed Sister who I am sure had Hypothyroidism as her weight went up and up after her third child and like us all very put out by her GP so kept away from them. She had one stroke and the family did not summon help but the second time she got took to hospital and found to have diabetes, chest infection and she started to improve, but they went and gave her paracetamol which she had allergy to and it caused her heart to stop and she did not recover. There are cases of Hypothyroidism in the family but I was the first to be diagnosed. THere was a male on my Mother's side my Uncle who had a pace maker and my Father's Nephew died at 40 from heart failure. My Father had a heart problem and smoked non stop until his lungs got to bad to smoke, but he died from lung cancer. My Sister's eldest son does have AF and on beta blockers, but again has smoked including the whole family and all have health problems but I am pleased to hear whilst in hospital that he has managed to stop smoking and the rest are trying. I also have a Brother younger than me in a home and he has both Hypo, Diabetes and heart problem, but again smoked and including illicit drugs, so things are not clear cut.

      At first I thought it was the lungs as AF causes one to be out of breath in fact at its worse gasping for breath and could be mistaken for asthma attack. This was the one occasion it occurred after tooth extraction in hospital when despite my warnings against adrenaline injection I was given two and it was a very hot day. I was also taking T3 Ony at the time and the T3 got blamed as they were stupid enough to do thyroid tests on admittence to hospital after having my days supply of T3 so naturally there would be high levels of T3.

      Last night I had pain between the boob area and bad noises of indigestion, and my temp was low and my BP monitor showed  AF, so got in touch with 111 and in the end they decided to send out someone who did  ECG, and BP which was high and check for diabetes. He appeared not to be conclusive on the AF and rang up somewhere to check up on something. I was told to make emergency appointment with GP today which I have got for 5.30 pm today. I am not sure either what to do about not still having the prescription for T3 as the ENDO wanted so only on the T4 having been on NDT.

      I did however have the greatest problem in spending a penny and ultrasound revealed 900mil in the bladder so in danger of having a catheter which has eased a bit now.

      I do  think however feel that my problems have increased due to a polypropylene TVT and rectocele repair done in 2003 which should never have been put on the market.

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    • Posted

      Jean warfarin in turn affects the thyroid and on top of this the labs even if ones GP orders FT3 FT4 and TSH, they will only do the TSH, and it can cause bleeding including from the gastric track. This area has already been weakened by Prednisolone and Aspirin and if one ends up having surgery in turn it is likely to cause excessive bleeding and a liklyhood of a blood transfusion. I don't know what blood thinner they injected into my abdomen but it has left bruises. I hope they do not want any more blood until the bruises on my left hand/arm have cleared. Had I not had to attend my appointment on Friday I would have got over it a lot faster without all these bruises.

      Psoriasis too is in our family and can cause a form of arthritis and I do have to wonder if that is the arthritis I suffer from which again like Hypo is autoimmune so caused in turn by something else.

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    • Posted

      Kathleen

      I am aware of the dangers of warfarin etc but thank you for advising me. I am under the care of the ACC so do not let these things dwell on my mind.

      Warfarin saved my life. I try to think positively.In the event of surgery the hospital would give an antagonist.

      Sadly people do get ill but we have to try to combat it in the best way we can.

      Glad you are feeling better.

      I will be offline for a while now.

      Jean

       

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    • Posted

      Hello Kathleen:

      First of all I hope you get well.  You do have some serious health problems and your heart/lungs must be sorted out or nothing else matters.

      Family history of this problem is very important to note even if they smoked.  As you most likely know, if your heart is not working in proper beats, you will see poor oxygenation and gasp for air like an asthma patient. 

      Complicating all of this is underlying thyroid issues and I do believe it runs in your family also, (ie: your sister), even though she was undiagnosed.

      Can you check to see if your Polypropylene  TVT can be replaced. Some major health problems like stroke and cardiac conditions can come from that and many are in class action lawsuits. 

      I am glad you called your emergency phone number and I hope all goes well at your doctor's office today.

      Shelly

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    • Posted

      The GP I saw has started weaning me off the Prednisolone which is a known culprit for causing/harming the stomach lining and with a complete change of drugs may well be cause of worsening gastric reflux which can in turn be confused with the heart especially if suffering in turn from AF.

      What I am not sure of is if I have two seperate autoimmune condition of if the Hypo causes the Psoriasis.

      The Psoriasis can in turn cause Psoriatic Arthritis and can be the cause of the heart condition.

      The sharp pain in the groin and bladder problem is a direct result of this polypropylene mesh and it is this that has set off the autoimmune problems that already existed.

      I am going up to a London hospital on Monday (transport provided) where I am seeing one of only two specialist's in England who are specialised in removing mesh TVT. I had already been seen and had tests there but was in too much pain to attempt the last appointment so had to cancel. I had to be re-referrred back in May and it has taken all this time to get an appointment as her lists were closed due to so many cases. One thing I will not have is to have it replaced with more mesh there or anywhere else in my body. If they can remove it without further damage to organs or nerves then they can remove it all.

      I also have to make appointment to see my own GP as he knows more about the heart next week.

      My Father was not allowed to serve in the army due to psoriasis and I can understand why as it is not just a skin condition.It is unknown if he had Hypo which is not surprising as even today patients are not being diagnosed and there were no tests available for thyroid and even today not that reliable.

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    • Posted

      Hello Kathleen:

      Wow, you sure have had a whirlwind of a day yesterday. I am glad it is not your heart acting up.  A lot of cardiac patients have more acid than a non cardiac patient.  Do you take Prilosec (Omeperazole)? it works on a 24 hour basis and does help reduce the acid well.  Steriods like Prednisolone can be very hard on the stomach and the body. Short term use is okay but long term uses causes brittle bones and it is not reversible.  You need to wean off them slowly so it is not a shock to the body.

      Psoriasis is known to be related to Rheumatoid Arthritis. Hypothyroid can cause dry skin problems, but if you have another autoimmune condition it can be a factor.  Have you been tested for Rheumatoid Arthritis?

      The TVT Mesh is more of a problem as it can cause major problems with the heart and damage other organs. Adverts for this are on TV in the USA and even class action lawsuits. 

      I agree to remove the mesh as long as it is safe for you and no further damage to your body will occur.  I hope that will be an option and that you are a candidate for the removal procedure.

      Shelly

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    • Posted

      Shelly Have just come home from having another spell of Afib from hospital, and was taken in Saturday.

      On Saturday morning I had severe cramp in top of my left leg as I started to get up to pass a motion.I tried to get up once but ended back down on my bed. Next I came round on the floor still with very bad cramp so could not do anything but lay in pain on the floor and managed to tip the bucket of urine over. Once it subsided I struggled to get back on my bed until recovered.My nose is grazed and red. My hairdresser  cut my hair which was arranged and about 3.20pm the heart rate went into Afib so took a bisoprolol and rang up 111. At first a Doctor came out and took ECG's and said it was running too fast and summoned an ambulance. My bladder and right groin were very painful and too painful to allow them to touch. They gave me bisoprolol and more later and took more ECG's. Eventually after not being able to pass urine they scanned the bladder and 1000mls so they ended up this time putting a catheter in. I was sent for a chest Xray and eventually admitted into a ward. This is the third time I have been in hospital with Afib and a loaded bladder and unable to pass it including constipation. Before I came home I ask a Doctor if the fact that the bladder is overfull and that I am unable to go would it in turn affect the kidneys and in turn the heart. Yes he said it could. Again they refused me my NDT in fact no thyroid medication and blood tests are showing hypothyroid and wouldn't they just.

      It is very bad how they are now withholding thyroid treatment if it is not T4. I told them that my best test results are when taking NDT done in March this year.

      I had already sent some complaints out but was in the process of another bundle to show that NDT is natural and a successful treatment which NHS T4 is not and not even a compatible human thyroid hormone but a synthetic prohormone in fact not a hormone at all.

      It also appears that anyone working for the NHS who suffers from HYPO has the same problems and that T4 does not work.

      Tomorrow I go to London to try and find out the cause of my urine retention and and groin pain and suspect the MESH TVT.

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    • Posted

      Kathleen

      Sorry to hear all this.

      Do you think the hospital you are going to tomorrow will admit liability?

      You may have to see someone privately to get the NDT.

      Have you googled tpauk

       

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    • Posted

      My reply to Kathleen's last msg  was to say that I was sorry to hear what has happened to her.

      I wonder if the hospital will admit that the mesh is the possible cause ? I am writing to you because my reply to K is awaiting moderation but I do not know why!

      Kind regards

      Jean

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    • Posted

      On the bottom of my  discharge letter it says  "May I draw your attention these issues around drug concordance in this lady"
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      I still have not got the Liothyroninine that the Endo wanted me to take. Another thing was that a GP wanted me to reduce the Prednisolone and it had it on my prescription but they offered 5mg so in the end none at all. They are not following advice never mind me.
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      Yes Jean that is just what it means but would any thyroid patient go back on a drug that did not suit. The thing is that they have not followed what the Endo wanted or my GP. They do appear to have made it very sore with that catheter knowing full well that I have appointment with Urogynaecologist tomorrow
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      It is a complex siuation. Only a dr can give you specific answes about medication.Only they know the reasons in your case.
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      Kathleen, your experience in the hospital worries me from two points of view.

      Firstly, it is well documented that patients with low T3 do not do well in recovery after surgery - that's with or without thyroid problems. Since T3 has a short half life and if you have a thyroid problem you should have been given at least your normal dose of thyroid medication.

      Secondly, it frightens me that you were given Lercandipine, in my humble and not too experienced (in medicine) opinion I think they got the name mixed up with Levothyroxine!

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    • Posted

      I think they mean "compliance" - it might be the English way of saying it.
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      OK, from the Oxford Dictionary:

      Concordance: ..agreement or harmony.......

      Compliance:.....obedience to a request, command.......

      Sounds like the docs are worried about whether you are doing exactly what they tell you to do. Like Jean said.

      Sounds like a PC way of saying "Compliance".

       

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      I already had Lercandipine which is for high BP, but did not give it to me today. They did not test the FT3 today. They naturally did not provide the blood test results in my discharge letter. I think next time I should be prepared, so could a little extra T3 help.

      They did give me a larger dose of Bisoprolol and this was one of the non compliance drugs because it masks the overactive mode be it with drugs or simply overactive. Its only an out patient appointment tomorrow.

      They only gave me one bag of saline sollution so any ideas what that might do. My stays in hospital always worry me.

      I also nearly had two lots of transport arrive tomorrow as they had double booked.

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    • Posted

      I think they bollocked me more on not taking the Bisoprolol and I tried to reasonably explain why I did not take it.
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    • Posted

      Try not to worry Kathleen. You are at home now and your GP and endo tal can only suggest treatments etc to your GP or to another specialist.

      I stress that the hospital can only suggest not enforce treatments, changes in medications and their doseages to your GP etc.

      Perhaps by morning your soreness will have eased off/

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    • Posted

      Barbara

      I had some oats this am and felt ill. This afternoon I HAD 3 rice cakes and tea made with coconut milk . This made me feel even worse. The rice cakes contain soy, salt, are gluten free.

      This gf diet is driving me nuts.

      Jean

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    • Posted

      If something makes you feel ill then tell the drs Kathleen.

      I would be interested to know what they say about bisoprolol maskingt he signs and symptoms of hyperthyroidism.

      Jean

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    • Posted

      Try sticking to really plain, natural food. I buy raw chicken thigh portions that I skin and cook in a batch of 15 (this quantity fits in my grill pan). I remove the bones and save them for making chicken stock. I bag the chicken into 85g portions and freeze. It then only takes 1 minute in an 850W microwave to thaw. I buy fresh vegetables (not ready prepared due to the undisclosed preservatives in them) and steam them. I can only tolerate carrots, brocolli, kale and cabbage. Chicken and vegetables are what I eat for dinner. I put the bones in a slow cooker and cook them in water for 24 hours - topping up the water as necessary. Strain and you have really nice chicken stock. I use this to make soup, either vegetable, or chicken and vegetable. I eat this for breakfast and tea. I snack on cooked chicken. I only drink water. Tea, coffee, chocolate, milk, fruit juice, alcohol all cause an adverse reaction. Once a week I have roast lamb, or pork. I also eat oily, non smoked, fresh, not prepacked, fish e.g. salmon or mackerel. I can't eat rice or soya. I take a multivitamin to make up the shortfall in nutrients. Hope this gives you some ideas!
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    • Posted

      Thanks for this  Barbara . This gluten, wheat, soy, yeast cows milk intolerance has hit me for six. I feel that every pleasure in life has been taken away.

      I am intolrant to corn as well as amaranth.

      BTW do you eat any fruit at all? I have a vit D deficiency and now unable to drink milk or have yogurt.

      Sorry to be morbid. Jean x

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    • Posted

      Barbara

      Sorry I meant to ask you.

      How many drumsticks would you eat on a daily basis in order to get your nutritional requirements ad to feel satisfied?

      Do you eat salads?

      Thanks

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    • Posted

      Kathleen I'm sorry to hear you've been back in hospital. Two things occur to me that might help:

      1) are you able to contact your endo and let them know what is going on? Ditto GP.

      2) Contact PALS ((patient advice and liaison services)

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    • Posted

      Hello Kathleen:

      I am very sorry to hear all that you went through in the last week.  From reading your post, I think the urinary retention is most likely due to the MESH.  It could be pressing on the bladder neck. 

      I would suggest that you ask your doctor to maybe have you self catheterize as not being able to fully empty the bladder will cause trouble with the kidneys, (even infection) as well as the bladder could burst which could result in bladder damage and death.  I am glad they put in the cath though as that was correct thing to do.

      I am shocked that NHS would not give you NDT while in the hospital or at least LEVO or the like. Perhaps if you need to ask your doctor for an order to allow you to bring in your own NDT.  You will be responsible to take on your own. Not having the NDT will cause you health problems, so ask to have a letter (Written by doctor), that allows you to bring your own.

      The MESH seems to be the culprit here and many people have sued the manafacture of this.  Please let us know how you do, in London.

      XO Shelly

       

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    • Posted

      Hello Kathleen:

      I also wanted to say I looked online and the class action lawsuit on the TVT Mesh is known to cause penetration of the bladder.  So it seems your problems as I said regarding the urinary retentsion are coming from this mesh. I hope it can be removed before major damage is done to your bladder.  You can look it up online TVT Mesh lawsuit.

      Shelly

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    • Posted

      You're feeling exactly the same as I was feeling earlier this year when all the intolerances hit me. Being itchy and swelling up is not pleasant. One breakthrough was when I realised that piriton and the other antihistamine tablets I was taking to stop the itching were making me itch! They contain corn. The only one that doesn't is Piriton liquid - but that made me swell up too. So there are no antihistamines I can take. I don't eat fruit because it too makes me swell up, even melon. I can eat fresh lettuce (not ready prepared). I can't eat tomatoes. For some reason I can tolerate oat milk. I get the one fortified with vitamin D and calcium. For a few month's I couldn't even have that. Recently as my thyroid hormones have become more in balance, I have managed to re-introduce porridge oats (providing they are cooked in oat milk), but not the gluten free ones. Have you spotted that a lot of sugar has glycerol in? Guess what? It too can come from a corn source. Get the raw cane demerara sugar (both sainsburys and aldi sell it. Tesco and Morrison's might too). Hang in there one gets used to it and horror of horrors I now don't even like chocolate!
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      As to how much I eat to feel full - there's only so much chicken and vegetables one can eat! So I lost weight. I've now stabilised which is a relief. I eat 1-2 x 85g portions of chicken a day. It was 2-3 when I couldn't eat porridge. I recognised that nutritionally I an deficient in nutrients so I take a multivitamin.

      Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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      As to how much I eat to feel full - there's only so much chicken and vegetables one can eat! So I lost weight. I've now stabilised which is a relief. I eat 1-2 x 85g portions of chicken a day. It was 2-3 when I couldn't eat porridge. I recognised that nutritionally I an deficient in nutrients so I take a multivitamin: 'multivitality gold'. I also take 'Viteyes 2' as it contains the particular combination of vitamins and minerals that research has shown is beneficiary for macular degeneration.
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      The only reason I can think why your posts unexpectedly go for moderation is if you don't put a space after the . (I.e. full stop). As the moderating software thinks its a website address.
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    • Posted

      THanks Barbara

      Your explanation makes a lot of sense. One can get a complex if one is not careful. I know that I had not written anything contraversial, nasty or sent any links so wondered why my posts were sent for moderation so many times. Looks like a software error.

      Many thanks I feel reassured now.

      With kind regards

      Jean

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    • Posted

      Thanks Barbara

      All this food intolerance is getting me down big time.

      It filters through into every area of my life.

      I had some gf bread toasted with a banana this morning. Disasterous. Went back to sleep woke up with back pain and aching joints .

      Got up, strip wash then TENS machine.

      Now drinking water.

      Aching is worse than ever soooo NO MORE GF bread for me. It was a different kind. Will let you know when I can muster the ebnergy to go and look. Thats how bad it gets Barabara.

      There is definitey strong intolerance to corn . Most definitely.

      Heaven knows what they into our food these days.

      Do you grow any of your own veg Barbara?

      are potatoes ok?

      I havn't tried oat milk . But will give it  a try.I am wheat, gluten, yeast, cows milk soy intolerant but I assume it is safe as you have it. I had never even heard of it.

      I will get some more raw cane demerara sugar.

      I wonder why all these intolerances started and why they came all at once together with ddrug intolerances/ Perhaps it is that they share a main additive. I know that I am unable to tolerate Warfarin ONE milligram tablets as it contains amaranth which as you know is a food colorant added to a lot of oodstuffs and sweets as in childrens sweets. Amaranth is derived from coal tar which is a KNOWN carcinogenic substance.

      It carrie a warning on the PIL abut the allergic reaction to amaranth. That is difficulty in breathing.

      Phenytoin can also cause interstitial pneumonitis and nephritis.

      Barbara pls send me the links. Thanks for everything. Jean xx

       

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    • Posted

      Shelly

      I looked it up out of interest. Shocking state of affairs.

      I hope Kathleen get ssomewhere with this. Best to go for a Class Action as it carries more weight and less traumatic and expensive. Same goes for floxed people as well. Class action starting in Britain too. Jean 

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    • Posted

      Jean is it soya that the rice cakes contain as I avoid Soya as it is known to interfere with thyroid medication.
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      Have you tried goats milk as in turn they say it contains more iodine but depending on time of year and where they graze.
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      Shelly the best test results are when taking NDT back in March and it is these I am going to do battle with via a complaints procedure as they withdrew all manner of thyroid medication, and surely patients have to take their health into their own hands if unable to get appointment with GP which in my case also included a phoned appointment. My nose loks worse from the fall I had due to cramp Saturday morning and feel I should photograph it.

      My journey to the UCLH today transport arrived but uncomfortable journet in lower back and buttocks and a more sedate ride in a car coming back so more comfortable and cheerful driver. I was given all the  drawbacks and benefits that one could have to having the mesh TVT removed but first the bottom bit to see if there was improvement, and then they might remove what are the arms, but it depends too how much is embedded into the tissues and if nerves have been damaged. They are going to send me a letter with all this in and I have appointment in December to give my decision.

      This hospital have not got concrete evidence that this mesh device has caused the Afib by causing urine retention, but if this improved after my mesh removal I said this could be an aid to the harm it does and a benefit to get it off the market. One thing not denied is the effect on my thyroid condition and hopefully by then I hope I can achieve something on the NDT.

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    • Posted

      That makes sense. I felt really ill as if I did not know what to do with myself. My hubby has taken the rice cakes to work with him.

      I am intolerant to soy, is that the same as soya? I have some lactose free milk and just noticed that it says not suitable for people with a milk allergy.

      I am not on any thyroid meds but on warfarin.

      Did you go to the hospital?

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    • Posted

      Kathleen

      Why are they stopping your thyroid meds.

      Are you on anything for your atrial fibrillation?

      Why have you been given until December to let  the hospital know of your decision re removal of this mesh? 

      Does that date bring any chance of taking action against them impossible!!

      Why wait until December before giving the hospital your decision to have the mesh removed when it is causing you severe pain plus urinary retention.

      Have they done any scans to establish the extent of the damage or migraion of the arms of this device into your tissues etc.

      How is your Atrial fibrillation connected to the mesh? You are suffering from a thyroid disorder so how dooes this equate to the mesh?

      Have you had any antibiotics?

      Which consultant are you under ?

      What caused the cramp? Do you usually have cramp?

      Did the hospital x ray your face/nose to check for a fracture?

      Did they advise you to see a GP asap?

      I would put your energy into getting better. Have you taken any photos of your face yet?

      Focus on getting an early GP appointment. Have you had any x rays or scans since this 'accident on Saturday morning? Jean

       

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    • Posted

      I experianced urine retention straight after the mesh procedure but it eased off a little but it is also known to shrink so could it have tightened up as it ages causing urine retention to worsen. If the surgeon did put it in too tight then it is a surgeon error. So far solicitors have turned my case down and the law is different in the UK to the USA. Solicitors in turn do not like patients treating themselves with NDT so have to do battle over this as well. But HA HA my test results show best on NDT. Would it be enough for a solicitor.
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    • Posted

      The medical practitioners have to give reasons for withholding your medication together with scientific evidence acording to the GMC . If you have the test results that correlate to a control or improvement in your condition on NdT then I do not see why this cannot be produced in a postive, constructive mannaer. Surely any medical Practitioner worth their salt should be delighted with a positive result and imporovement in his or her patients condition irrespective of whether it is NDT or otherwise.

      What does the Rooyl College of Endocrinologists have to say about your evidence Kathleen?

      Will they back you up?

      If not why not when you can prove the need for NDT

      Your case may go a long way to furthering the cause for NDT.You just do not know. Have you contacted tpauk. with your findings, I am sure they would be very interested as well

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    • Posted

      Shelly it is too late to sue the manufacturer as you get 10 years from when it was made and in my case out of time. If the tape was put in too tight it would be due to an error by the surgeon and you get three years from when this is known.  If the bladder gets painful again I know the cause now, but there is too much coincidence to say that it is not causing Afib. Regarding NDT, they gave me no thyroid medication at all and locked mine in the cupboard. Could this in fact be classed against my human rights. Withdrawing patients from T3 is in fact worse as it does not last long in the body so good job I was not in there for too long, but will have to tackle the Chief Executor and have yet another bundle to send off to him.

      The success in having the mesh removed depends on if the nerves have been damaged to the neck of the bladder. The pain in my bladder when prodded actually came from the sterilization scar, and today I had to go straight to the loo for a wee and on seeing the specialist they scanned my bladder and made it 163mls and he was happy with that, but 1000mls is far too much. If they can successfully remove this mesh from under the bladder it will remove pressure from the arms and might stop the groin pain. A gynaecologist who I consulted at my local hospital as I was refused a referral back to the specialist who put it in not only did she not send me or my GP a clinic letter but this pain in the bladder that I complained of which is now clearly caused by urine retention told me it was all in the mind so it gives me a reason to put in a further complaint. This gynaecologist has cost the hospital a lot in compensation but not just in mesh cases and probably struck off by now. Had she diagnosed correctly I could have had it removed a lot earlier, but thankfully she did not choose to operate on me.

      I also think it is worse when in turn it worsens an existing problem.

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    • Posted

      Jean I do not belong to tpauk now as my case is complicated as it concerns two problems with one causing problems to the other and have been told off for it. It is impossible to seperate the two and to be honest I would not want any other thyroid patient to suffer in the same way, but have been barred from this. I have tackled the RCP and helped tpauk over this, but maybe as you say send them also my test results to see what they have to say then.
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    • Posted

      Kathleen

      Who has told you off? Who has barred you and from what?

      I would have thought that the fact you were not given ndt is serious enough especially when you have Atrial fibrillation.

      Do you hand in all your medication or keep some in your bag as a reserve in case the hospital loses the ones that you have to hand in?

      In some hospitals patients are allowed to self medicate.

      I advise getting a copy of your medical records,you know how to go about it.

      Did you have any x rays or scans of your face following your fall? What caused the cramp. Have you got a Vit D disorder?

       

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      Jean they did not allow me to take my thyroid medications while in hospital and in fact locked them away and even the Prednisolone was not given to me as my GP had wanted me to gradually cut them down yet the hospital then wanted me to go back to the 5mg so I disputed it and they gave me nothing which may be why I was in a lot of pain this morning.

      I was put back on the Bisoprolol for the Afib which they did not like me stopping, but in turn I could not get appointment with GP over this so am getting into trouble in all ways. I explained to them that it was not a good type of drug to give if taking thyroid medication, but all they care about is treating the AFib.

      The hospital I am now under for tape removal has done nothing wrong, but I did not see the actual specialist today but one of the team who has basically described the pro's and cons of tape removal and is going to send it in letter format so I can study it and have time to concider what I want to do and go back in December to see the actual specialist to give her my decision. She is a very busy Doctor who is having to remove many of these mesh devices that should never have been allowed on the market. A word of warning no medical devices are tested on the human body before going on the market and appear to be a problem in taking them off the market. in fact patients are being used as the guinea pigs for medical devices.

      Any illness can cause a problem to a thyroid condition even an infection as it is autoimmune.

      I don't think I would be allowed to mention Drs names on this forum.

      I wonder too what caused me to get such bad cramp, so could it have been due to not receiving throid medication, magnesium or a result caused by the mesh. I can get cramp in my big toe or lower leg  and take magnesium, but never so bad as to cause me to fall.

      I do have already a  GP appointment on Friday and no scans were done on the nose but Xray was done on the lungs and possibly checking that an infection in my lung had not caused the Afib.

      This muscle joint pain appears to worsen with ill health such as when I had pneumonia after having a polyp removed, but I did not have this before the mesh implant, and it has been labelled as Polymyalgia, so unsure if its another autoimmune condition or in turn caused by Hypo.This mesh cannot have migrated in all my joints so unsure as to how it is actually caused. The diagnoses of Polymyalgia came about due to the increase in the ESR and CRP which came about after the mesh surgery.

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    • Posted

      Hello Kathleen:

      I read your post.  I feel for you.  I recommend you do all you can to have the MESH safely removed. It is a known problem with the mesh that it causes bladder problems like retentsion and damage to the bladder itself.  I also believe the groin pain and your Afib episodes are related to this bladder retentsion. 

      What did they say about your chances of having this MESH removed?  Are the nerves damaged?

      I am very shocked at how a hospital would not allow you the NDT. I would complain to the people in charge of the hospital you were in. I find that against the "patients bill of rights" that we have in the USA.   You should not be denied your NDT as it is as important as insulin to a diabetic.  It is criminal to with hold a medication needed.  Ask your MD to provide you with an order that you must be able to take your NDT in hospital if this should happen again.

      XO Shelly

       

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    • Posted

      Shelly I have just finnished adding to my letter to the Chief Executer at my local hospital and in turn ask him how he would feel about being deprived of NDT which he knew helped him and of course that it is a deprivation of my human rights in removing and locking up medication known to help and of course this specialist who said the pain in my bladder also on the scar of my sterilization was in the mind,but pleased that she never operated on me. The hospital where I went to today are going to send me a letter stating the drawbacks and benefits in having the lower part of the mesh removed and leaving it up to me if I decide to have surgery. It sounds like the lower part is easier to get at and one problem is clearly at the bladder neck and it could release the pain in the groin by removing the pressure on the arms from the lower half. If urine cannot get out the bladder fills up so there must be more pressure pulling down in turn on the arms causing pain in the groin. If problems persisted then they would remove the arms. As far as I understood they cannot tell if the nerves have been damaged until after surgery. He did say that 70% of patients found improvement, but incontinence would return, but it is the effect on my health and pain that is more important and apparently most women like me have turned round and said they would have rather worn nappies then the harmful effects of mesh tape.I do though see that they might be removing any surgical blame by leaving patients to make the decision and a bit like simply placing the CE label on everything, and as an example marking all toys as not suitable for children under three which exempts them from any blame.
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    • Posted

      Kathleen

      This needs very careful thinking about . The Chief Execuive of the hospital should take responsibility for allowing this device to be purchased in the first place.

      What do you mean by the CE label?

      Jean

       

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    • Posted

      Hello Kathleen:

      All of what you are experiencing is related to the MESH. If it was me, I would have it removed. I think having urinary incontinence is the lesser evil here.  Having groin pain and unable to urinate is far worse.  Also the damage to the bladder and nerves.

      It may not be too late to be included in the class action as they are still looking for cases in the USA and I would check it out. online.   Money has been put aside for the victims of this awful product.

      As to your letter, by all means send it.  I am sure it is a violation of your rights as a patient and it is criminal. It is a legal medication and to make you suffer withdrawl symptoms due to some crazy committe decision, is criminal. 

      Let us know what happens.

      XO Shelly

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    • Posted

      Have you thought about sending a copy of the letter to your MP? Send a letter in advance then make an appt to see them in person if you are able.
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    • Posted

      Jean

      Please send info of class action lawsuit in UK to Kathleen.  I believe it is still ongoing, and they do adverts in USA for it.

      Shelly

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    • Posted

      Kathleen:

      The USA got our system of justice from England. LOL.  We once were a colony. However, we have maybe changed a bit over the years.

      The TVT Mesh has flaws to it and of course you were not made aware of this prior to it being placed inside you. The MESH has been known to penetrate the bladder or move inside due to erosion due to acids in the body. It also is causing severe and possibly permanent damge to women's bladder's and nerves.

      The lawsuits are class action which means you call a number and tell an attorney what happened and you are made part of a class. It would not be any money out of your pocket.   They recently put a settlement aside for damages to people who got the MESH.  In the USA we would have to pay co-payments that you do not pay under NHS. However the money is put aside for as many people who have had problems and you may be entitled to a part of the money which is a huge amt.

      You would not need to see a solicitor as if you were going it alone, all of that is already done when in the class action.  In the USA and with most class action lawsuits, you can become part of the class as long as you developed the injuries regardless of how many years you had the mesh.

      The product is faulty and you have been injured it is to help you from all you suffered do to a negligent product.

      I hope it can be removed safely for you, join in the class action.

      Shelly

       

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    • Posted

      The CE label is supposed to indicate that the item is safe for the intended purpose and I think in the future patients who have received a medical implant are going to be provided with a card with CE label tracable number in the same way that an animal carcass can be traced and hopefully the factory and person who made it can be traced.
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    • Posted

      Shelly I am not the only one in the UK who has been turned down by solicitors. Are you saying that NHS patients in the UK can become part of a class action in the USA. The law  in the UK is different to in the USA over product liability. If however this tape was put in too tight by the NHS surgeon then it comes under clinical negligence and you get three years from the time you have been informed of this. The MHRA license medical devices and drugs in fact it is money from these licenses that fund them. They rely on what/who they call notifiers to check and pass these devices but they get put on the market without ever being tested on humans. Reporting of problems by Doctors in the UK is voluntary so the true figure is not known of the harmfull effects.

      Until I have this surgery to remove the bottom bit of this tape I am not going to know if the nerve has been damaged. If it has I will still suffer from urine retention and have to have it removed through a catheter which in turn as we all know can lead to infection from the catheter.

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    • Posted

      Hello Kathleen:

      This is worldwide!  USA, Canada,Australia & UK.  All are having ongoing TVT Mesh class action cases. I found numerous websites and one from a Oliver Thorne Solicitor, Michelmores Law Firm, UK. There is a web address but this website does not always allow us to post web addresses.

      They know about the problem and from what I gather is money has been set aside for the victims of this defective product.  I will PM youthe web address.

      You can check into it.   Shelly

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    • Posted

      Hear, hear. Glad that I do not hav to make that decision. Shelly in the US there is a class action for people poisoned by fluoroquinolones.

      Can UK citizens become part of that as well?

      Jean xx

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    • Posted

      How do you know they have not been tested on Human Beings? I believe that I just wondered how you could be so sure.

      Kind regards

      Jean x

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    • Posted

      The MHRA stated this in the Scottish Petition on mesh, and it concerns all medical devices. I had already asked if the lady in charge of medical devices would have one of these mesh implants but did not receive a response but this question was put to one of them at the scottish petition and the person it was put to had to give an answer which was would you allow a member of your family to have one of these devices.

      The same company who made my TVT also copied our hip implants, but theirs caused shredding of the metal which got into the patients blood stream. This crafty firm then brings out another model to make money out of with yet another untested in humans model so these patients already having sustained damage were being tested yet again with their new model. Another problem attached to these spare parts is that when departed they do not rot or burn so are they perhaps recycling them.

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    • Posted

      The Specialist did say that 70% of mesh removals were successful, but I am becoming a vegetable as it is and no longer able to go out taking videos.
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    • Posted

      Kathleen I do not wish to patronise you but you are very good at putting forward the points and especially the salient ones.

      I cannot see that you have anything to lose in seeking out the people in the US who are in charge of this class action.

      Whilst their legislation may differ in some respects surely the main issues remain the same.

      What do you think?

       

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    • Posted

      Jean

      I guess nowadays there is a class action on everything as they do not really test the products out well, and then something happens.  You can e-mail and ask if a person outside of the USA can be in it?  I know that with the TVT MESH it is ongoing as I just sad an advert again for it saying "millions set aside and looking for people who had it." 

      What have you to lose?  If you found out about it online RE: Fluoroquiolones, try and ask.

      Shelly

      XO Shelly

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    • Posted

      Shelly

      I have contacted someone who is going to start a Class Action in Britain. I have also been in contact with a few people who ave also been affected by this poisonous fluoroqinolone.

      These drs have known for a long time what the dangers are and that this drug should only be prescribed as a last resort. 

      People's lives have been wrecked by the damage to their muscles from these flluoroquinolones. It attacks the DNA of the cells, these then reproduce more damaged cells and cause musclle tears, tendon ruptures and other vile side egfects. The fluoroquinolones are just like  chemotherapeutic drugs.

      The effect can be immediate or occur several years later hence making it difficult sometimes to identify the causitive agent.

      Jean xx

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      Jean are you talking about the fluoride they are putting in some water supplies. They have not put it in my water supply as they said the reason was the effect it can have on the thyroid. A lot of children are now being born with genetic diabilities so chemicals have to be involved and more and more conjoined twins are being born including humans and animals born with two heads.
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      Hi Kathleen

      I can see why you think it ids the flouride that is added to the water but I was referring to a group of antibiotics called the flluoroquinolones. These cause damage to the mitochondria of the cells causing muscle damage, tendonitis, ruptured achilles tendon, plantar faciitis plus damaging the kidneys and all manner of other serious adverse reatios.

      However the names are similar and I will definitely look into this to see if these chemicals/toxins are connected.Perhaps you could by contacting floxiehope. Lisa Bloomquist.

      Thanks.  Jean

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    • Posted

      Dear Barbara,

      thank you for your interesting insights. I have Hashimoto and I want to stop taking Levo, I dont think it works. For example it is weird that my thyroide became smaller since I started to take Hormones. Should they not help to reduce my Antibodies ? That means that Doctors are just looking at your Levels but not what could stop the Antibodies to attack. I would love to just stop the Hormones. I don't know what to do, I wish it could just work with the right diet. Your private Endocrinologist seems sensible. Is he based in London ?

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