test results hypo or hyper? confused

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Hi Everyone,

I hope you are all doing well I just wanted to pop these results over to you as I truly believe I may have stumbled across something that could be quite significant in my recovery but I wanted to know your thoughts?

I was diagnosed Hypothyroid in 2007 and put on 50mg thyroxine and sent on my way, now before I was told I had it I felt fine, great in actual fact, it was just a rutine blood test that suggested it. but I thought oh well take the tablets a see what happens, and guess what? I felt fine taking them, I didnt take them every morning like the doctor said and sometimes I would take them weeks even months apart but felt fine, better than fine, no fat no tiredness nothing gym every day and this went on for years until on day in 2013 I read the dangers of not taking my thyroxine so I started taking it. and low and behold a few months later I had what seemed to me to be a total mental breakdown and I started to feel all of these terrible hypo/hyper feelings my TSH made a big jump from around the 3 mark to the 1.5 mark and ever since I have felt terrible, now before 2013 I never ever had a single problem with anything, no anxiety no depression, no weight problems, no sleep problems, no tiredness nothing nothing nothing, but saying that I didn't always take my Thyroxine as I was meant too, and when I did i would take it when ever I remembered with food, with coffee with what ever, no interest in the effects of absorption, but In 2013 I started taking it religiously at night with no food or drink for 3 hours before or after so the absorption would of been 100%, but since then I have never felt right and its only now that I'm really starting to put the pieces together. for the last 2 years I have been in and out of the doctors none stop, I feel weak, tired, anxious, depressed, confused, forgetful,'m to hot all the time, sweating, weight gain, both hypo and hyper symtoms so im so confussed? I totally came off the thyroxine 2 months a go for 3 weeks and all the hyper simptoms went but my god did the memory and brain take a hit, I was so confussed I felt I was losing my mind, not tired not slow just forgetful and confused and now I'm back on it that is slowly clearing up now im getting all the hypo anxiety and weirdness back. my private doctor that I just started seeing tried me on NDT and my god did it send me loopy, my whole head of hair just feel out, heart felt like it was going to pop, no sleep racing thoughts just horrible. 

So my question: is it at all possible that I don't work well with a TSH higher than 2.5-3 and that anything higher causes me to have hyper symptoms as well as hypo? it seems so strange that up until the month my TSH jumped to 1.5 i had felt great, better than great, never had tiredness, active, fit, happy. could it be that at 50mg of thyroxine absorbing totally its is pushing my tsh to high and I should be/feel better in the 3 range?? 

And why when I stopped my thyroxine for 3 weeks did my TSH become better on the next blood test?? 

Have a look at the chat of my results below and see what you think? I would be so very grateful if anyone can help me make heads or tail of this 

P.S SORRY FOR THE LONG MESSAGE, ITS BEEN 2 YEARS IN THE MAKING wink

         RANGES

    TSH             T4

(0.27 - 4.2) + (10 - 24)

05-03-2007 - TSH 4.36, T4 16 

08-05-2007 - TSH 6.03, T4 15

25-05-2007 - TSH 5.48, T4 17

30-05-2009 - TSH 5.13, T4 18

19-10-2010 - TSH 3.42

16-08-2011 - TSH 2.86

25-06-2012 - TSH 2.94

21-08- 2013 THE DATE I STARTED FEELING TERRIBLE

20-09-2013 - TSH 1.59

30-01-2014 - TSH 1.95

23-06-2014 - TSH 1.82

07-08-2014 - TSH 1.97

09-09-2014 - TSH 2.26, T4 16, T3 4.4 (2.8 - 7.1) AT AROUND THIS POINT I DO REMEMBER A SLIGHT IMPROVEMENT 

20-02-2015 - TSH 1.71 

20-05-2015 - TSH 1.66, T4 19, T3 4.6 (2.8 - 7.1)

AT THIS POINT I HAD A 3 WEEK STOP OF MY THYROXINE, NO THYROXINE AT ALL FOR 3 WEEKS AND YET MY NEXT BLOOD TEST SHOWED MY TSH BETTER THAN THE ONE BEFORE THE BREAK?? HOW CAN THIS BE??

29-07-2015 - TSH 1.35, T4 17.6 

It would be amazing to hear your thoughts.

Many thanks 

Nick

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38 Replies

  • Posted

    How did your Doctor prescribe NDT to you and at what dosage. I note of course no tests were done for the FT3.
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    • Posted

      Hi Kathleen,

      Thank you for your reply, sorry I forgot to put that the t3 resuts above are actually Ft3 resuts also the t4 results are Ft4 as well,

      I found my Private doctor through thyroid uk, he was on their list of trusted thyroid doctors, went to see him, we did blood tests and saliva/ urine tests for adreinals which showed a slight drop in my afternoon cortasol and slighly low t3 but nothing crazy, he wanted to try me on nature thyroid so I started on half a grain, felt bad, then up to one grain. felt like a mental patient and my hair litereally all fell out in 2 weeks. so I guessing I went super hyper???

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    • Posted

      I too was better when I stopped taking T4, but I had a GP tellingme my blood tests for thyroid were not good that I would be ill and become old, but I felt old on taking T4.

      Eventually I too consulted a Doctor who had thrown his resignation in as the NHS would not allow him to give the best advice to thyroid patients and in turn I go by his bible of info.

      I ended up trying T3 on its own, but even with a small amount I felt so much better that I did too much and became worse so I left it off and the restarted it on a very minute dose in fact some patients crush the T3 into powder and lick it to get used to it and I gradually increased it, but you also have to balance what you do.

      The problem was that I was found to suffer from Atrial Fibrillation and how they love to blame it on T3. The problem too was when it came to having a tooth extraction in hospital that despite me telling them I did not want adrenaline I was given two adrenaline injections and a few days after I had a very bad spell of AF and almost collapsed. I ended up in high dependency unit and the blood tests would naturally show high T3 after having all my three doses of T3 so they blamed that not the adrenaline. They changed my thyroid medication putting me back on mainly T4 with a tiny bit of T3 and warfarin and other pills. I did not feel well at all so at first switched back to the T3 I was taking and eventually back to all T3 and gradually withdrew from all the rest they put me on. One of these pills was Bisoprolol and this can mask the effects of Hyper so in turn it can mask the effects of taking too much thyroid medication.

      They have just done this to me again although this time I had been taking NDT for a year and got my blood tests OK I happened to have an appointment with the heart specialist but also had AF and normally  I would have stayed at home and wish that I had as they kept me in and again put me on a higher dose of Bisoprolol and withdrew my thyroid medication being NDT. I was sent home with thyroxine T4 and told to start it the next day and I feel worse and my low back was very painful today.

      The Endo had wanted me on 50mcg T4 and 10mcg T3 twice a day but of course they never gave me the T3.

      Today I stopped of at the surgery and told them I was going back onto my NDT as not only was I feeling worse but my back had got so painful.

      I already know that I can go to 3 grains of NDT a day but in turn this Bisoprolol slows your thyroid, so I now view it that they hand out Bisoprolol with intent and yes I would stop taking it in time.

      Having told the receptionist what I am going to do naturally they could not find a free appointment for my GP or even a phoned one. Of course too they may want me to be in so much pain that I would be unable to go out. Just take the greatest of care and not rely too much on the NHS and another point if the NHS give out drugs like Bisoprolol that mask the effects of being HYPER how can any thyroid test be accurate in fact the test would show you were HYPO, when you may well be HYPER.

      When you say that you started on  half a grain of NDT was that as one dose as don't forget that T3 does not last long and the reason it has to be taken several times a day. Another thing is that if converting ok from T4 to T3 you also need to add a little extra T4 to it as the ratio in pigs thyroids is less than in humans so I am going to make use of the T4 that the NHS have prescribed along with my NDT.

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  • Posted

    Was the manufacturer of your 2007 - 2012 pill different from your 2013 (and thereafter) pill? The reason I ask is because in December 2012 a generic pill manufacture by Forest Pharmacueticals was discontinued and the most used generic Levothyroxine was introduced. LIke you, I was perfectly OK previous to December 2012 then in January, February and March of 2013 I put on 35lbs and felt lousy for 2 1/2 years since - until last August when I went on Armour Thyroid NDT.

    Look into this first because it could be a pill which you do not do well on. It does take a long time to find out which pill doesn't cause bad effects because there are about 12 manufacturers and it takes about 3 months to give each one a fair trial. My suggestion is to get on NDT and also ask (tell!) your doctor that you need your T3 measured. If s/he refuses, get another doctor - it took me three docs before I got on NDT - I am now on a sort of compromise, she will not measure T3 so I do it myself - I am virtually self regulating now. BUT before you do this, read a book called "Stop the thyroid Madness". Also, read up as much as you can from the Internet, so that you get a clear picture of the whole world of thyroid problems.

    Those of us without great doctors (myself included) are pretty much on our own. Knowledge is the only power we have.

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    • Posted

      I'm sorry I forgot to mention something.

      This T3 I refered to is the active hormone while T4 is it's source material, the one you are taking. You must be making T3 to have any energy for anything - including brain processes (which is why you are feeling slow and confused - as did I for 2 1/2 years).

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  • Posted

    Hi nick, as you say, your results aren't clear cut. To make sense of your results it would help to have a couple of extra pieces of information i.e. what dose and what medication you were on when each blood test was done - this is because there is a time lag between changing the dose and the blood test accurately reflecting that dose (for me it takes about 12 weeks).

    To be able to work out what TSH, T4 and T3 is normal for you (i.e where you feel wellest) it would also help to know how you felt at the time of each blood test.

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    • Posted

      Also, levothyroxine between brands is not identical, so even being given different brands can cause some people (those who are more sensitive to a particular hormone level or brand) to feel less well. Then add into the equation that levothyroxine is allowed to vary by +10% and -10% from its stated dose (I.e. a 100mcg levothyroxine tablet can actually contain between 90-110mcg of levothyroxine) and you can start to understand why it can difficult to work out the correct dose.

      By looking at the results for 20/5/2015 when you were on no thyroxine for 3 weeks, I can't understand why your TSH ,T4 and T3 are all still in the normal range. To give you a reference point, when I stopped having thyroxine for 8 days, my TSH shot up and my T4 and T3 results plummeted. From the results on that day when you weren't taking any thyroxine and the next blood test on 29/7/2015 it looks like you don't need any thyroxine! ?? Has your thyroid problem fixed itself? Does this happen?

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  • Posted

    Hello Nickriot1:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease. When yourTSH is on the low end it means you are having too much thyroxine (HYPER) and you will see the symptoms of that.  Some are: sweating, feeling HOT, rapid weight loss, loose bowels, anxiety.

    When the number goes towards the high end it means you are low. Now when you stop the medication, your body still has a level and all meds have a half life and a level built up.

    It can take the body about 4-6  weeks to adjust.  It is not a fast thing.  So for a while your results are all on the low end, meaning you still have a high level in you.

    You should always reduce slowly in 25% reduction increments.  It is also worth saying that your ideal dose will take a bit of trial and error.  NDT is a natural medication and it is good but may not agree with you. 

    I am on T3 alone Cytomel (Liothyronine) as I have trouble converting T4 into T3. There are so many other thyroid meds on the market.  Many people take LEVO without a problem but some of us can't because we can not convert T4 correctly.  I was on NDT but it became hard to get at my local Pharmacy in the USA.  So maybe you need a combo of T3 alone and a little of T4 to balance you.

    Also some of the thyroid meds have fillers in them and some people are sensitive to them.  I tried NDT, Thyrolar, Levo, and now am on T3 alone. You have to find a combo that works on you and ask your MD about just T3.

    Stay well,  Shelly 

    Maybe you are not converting T4 as well as you should. 

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  • Posted

    Nick, did you follow the instructions for dosing with NDT? Because it contains T3 it is important to start on a very low dose and increase it slowly so that your body can adjust. If you register on tpauk (thyroid patient advocacy) instructions for starting on NDT can be found on there.

    Another thought is: when you had your T3 blood test results done, were you taking levothyroxine? If so, as your T3 result is in range, it is unlikely that you are having a problem converting T4 to T3.

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  • Posted

    Nick, another idea is: given that your blood test on 29-7-2015 shows your TSH at the bottom of its range and your T4 near the top of its range, and presuming you hadn't changed the thyroid hormone dose in the previous 6 weeks, it would be worth asking your doctor if you should reduce the dose slightly.
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    • Posted

      Hi Barbra,

      Thank you for your reply, everyone has been so helpful already and I'm going to work my way through today and answer back to everyone.

      In regards to your comment tho that was my thoughts exactly, I have thought for a long while that maybe it is just over medicating with something I don't need so much of? In the 6 weeks leading up to that blood test I had the first 3 weeks of taking my daily dose of 50mg then can off for 3 solid weeks, nothing at all and straight away did my blood test which came out better than it was before which totally baffled me? I mean surely 3 weeks off is long enough to see a change in figures is it not??

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    • Posted

      Hi Nick, the only explanation I can think of for when you came off thyroxine for 3 weeks your results acted as though you were taking more thyroxine, is that you, unlike me, have a thyroid that is still working a bit, and when you reduced the levothyroxine dose your own thyroid took over and produced thyroxine to make up the shortfall. I'm not a nurse or a doctor though, so there may be another explanation. Given you didn't feel well when you weren't taking any levothyroxine it seems like you still need some levothyroxine. Remember too about the time lag between changing dose and blood test results. The best way to see this would be to draw a line graph, plotting TSH, T3 and T4 blood test results and thyroxine dose on the vertical axis against time on the horizontal axis. (At long last a use for studying 'A' level pure and statistics mathematics!)
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    • Posted

      Hi Lucy, I'm pretty sure we can't load pictures onto this forum, so try Googling 'how to draw a line graph' and it might explain.
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    • Posted

      Thanks Barbara.

      The situation is getting me down and feeling helpless again.

      How do you cope with it all?

      Did you have surgery on your thyroid?

      If the thyroid is partially removed then does that make you hypo and/or hyper or a combination of both conditions?

      Lucy.

       

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    • Posted

      You're right, the best way to understand how to draw such a graph is by seeing what it looks like, so I hope googling it works.
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    • Posted

      I will have a go.

      If it is not too personal a question have you had your thyroid rmoved?

      I am puzzled as to what the prognosis/result is when the thyroid is removed. I wonder if being on throxine is better than the drugs for hyperactive thyroid.

      Lucy

      Lucy 

       

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    • Posted

      My hypothyroidism was caused by my immune wystem attacking my thyroid. So i haven't had surgery. Unfortunately I only know about the parts of thyroid disease that I've experienced. I think that the remainder of your thyroid will increase its production of thyroxine (aka T4), but I'm not sure. It might also need some help by you taking thyroid meds. As to how to cope, the sort of things that helped me were: firstly remembering that this is a disease that is treatable (although it takes some trial and error to get the dose right) and employing 'tricks' to get around the symptoms. For example, when I make an arrangement to meet a friend I tell them I've got a poor memory and ask them to remind me. If it was a work contact, I suggested that they contact me to confirm the details nearer the time, or on the day. When i was working, I made sure I didn't go out in the week, I arranged a day off in between home activities so that I had chance to recover. I wrote everything down so that I could re-read my notes. I went to bed early. Sometimes I would sleep for 12 hours a night. I spoke to occupational health at work and they suggested I request a flexible working contract so that could start later and finish later (to get round my being sluggish and 'thick' in the morning). I could start anytime before 10 am, it didn't stat a finish time and I could spread my 37 hours over the 7 days in a week instead of doing them monday to Friday. Not all companies can be this flexible though.
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    • Posted

      Thanks for this very comprehensive reply.

      Re your work situation I assume that you have a sedentary job? Don't mean to intrude just trying to get a handle on things thats all.

      What I do ot understand is why people get very depressed with thyroid disorders.

      I feel very tired but do not understand why.

      This scares me.

      Lucy

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    • Posted

      Sorry, phone jumped and that reply got sent before it was finished... It does get better. Do read up on hypothyroidism when you feel up to it. You will get a lot of hints where to look by reading the posts in this forum. Remember 'mild depression' is also one of the symptoms. To combat this, i found exercise (swimming) helped. Also warm baths. Both exercise and heat help kick start my metabolism. I make lists. I set alarms if I've got to do something. My phone is good as it tells me what the alarm is for! I also take a multvitamin, making sure I take it 4 hours away from my thyroid meds. I hope there are some ideas in these posts to help you.
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    • Posted

      Hello Lucy:

      My name is Shelly and I am a nurse.  I have Hashimoto's thyroid disease since I was 27. I am now 54.  I still have my thyroid but is does not work well and I am on T3 Cytomel only.

      The question you asked is a very good one.  When you are HYPER thyroid you have too much. The symptoms are heart racing/fast pulse, anxiety, feeling hot, sweating, eyes that buldge, and there are more. If the heart races a lot, it can cause a heart attack.

      Many people have a lobe of the thyroid removed and feel fine after it, because it helps stop the over production of the hormone.

      In some they use RAI to destroy the thyroid gland, and then you have to take replacement meds to have a thyroxine level. They also have a med that can slow it down, (carbimazole). It all depends on the person and what you and your doctor decide.

      It is much better to keep your own thyroid in my opinion than have to take meds.  Some people with only half of a thyroid left may take a small amount of thyroxine if their own gland does not pick up to normal levels.

      I hope this helps,

      Shelly

       

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    • Posted

      Thyroxine is a hormone. When hormones are out of balance they pay havoc with emotions, mood and energy levels - just think of the effect on pregnant women! Tiredness and feeling a bit down are normal when the thyroid is out of balance. Just think of a car and fuel - when it is out of fuel it hasn't got the energy to operate; if it is low on fuel it can chug along but doesn't have enough oomph to accelerate. As you are finding, coping with an underactive thyroid is as much of a mental battle as it is physical. It helps to remember that it's a disease that's treatable. Does the analogy of a suit of armour help? - It takes time to get one to fit and for one's body to get used to it. Same with thyroid medication. Re the job, I worked in an office as business analyst, project manager, amongst others things, all despite having an underactive thyroid (this isn't meant to be bragging, I'm just trying to show you that it is possible to get your life back). Recently my company restructured and I took redundancy because sitting leaning over a desk and using a computer caused me to have a muscular-skeletal problem with my shoulder that needed an operation (sub-acromial decompression) 15minths ago. I've now recovered from that and got full movement back in my shoulder, but working a computer for more than a few minutes at a time causes me pain. I get on best when I keep moving. As with everything, moderation is key. Apparently people with an underactive thyroid are more susceptible to muscular-skeletal conditions (presumably because our muscles get fatigued and can't keep the correct posture). With me I am more predisposed to a problem as I have hyper-extensive ligaments, which means my joints don't get held in position properly by the ligaments, so I need to keep my muscles toned to do this instead. I would really urge anyone with an underactive thyroid to go swimming and do Pilates, both activities help combat the mental and physical symptoms of an underactive thyroid.
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    • Posted

      Thanks once again for your comprehensive reply.

      You are a very motivated person.

      I will definitely try the Pilates. Did you do it under an instructor or find out for yourself what to do? If you did it yourself how did you know what was safe etc?

      Does exercise help everyone with a thyroid disorder I wonder? I ask as a friend of mine has an overactive one and takes carbimazole. She is very achy as well.

      Lucy

       

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    • Posted

      Hello Lucy:

      When a person has newly had a lobe of the gland removed, doctors may give the person a month to see if the remaining part of the gland is compensating. So they could draw blood a month after, and see the level without any replacement hormone.

      If the person would need any replacement meds,  they would check the blood again in 2-3 months.  Then maybe at 6 months post-op.

      Once a stable level happens, maybe the blood would need to be drawn before seeing the doctor which would depend on how often the doctor asks you to come back.

      I hope this helps.

      Shelly

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    • Posted

      Re Pilates. I found out about it as my private physiotherapist was also a Pilates teacher. So I started with her. I would definitely go to a class, little nuances in how one does an exercise can make all the difference to how well it works. The instructor will also tell you what not to do, so you avoid hurting yourself (although i did have one that didn't - i stopped gping to her, ironic that she was the most expensive!). I go to the ones at either the village hall or a leisure centre. A good teacher will tell you to listen to your body and not pressure you to go to the next level up. For each exercise, they will give you options (without being asked) to make it easier if you are finding it hard, or to make it harder if you are finding it easy.
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    • Posted

      I just do swimming and pilates if I possibly can because I know it will make me feel better. It's also an incentive if I've booked into a class as I hate wasting money!
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    • Posted

      Barbara could you kindly explain what is involved in Pilates as I wonder if it might help my muscle and joint pains which appear to worsen overnight. As a youngster I found that to try swimming caused me more pain in my lower spine. You mention that you get on best if you keep moving but does this sort of activity in  the day cause a lot of pain in the night.
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    • Posted

      Hi Kathleen,

      I am not sure if this will help but if you have thyroid problems it is quite likely that your muscle and joint pains are worse in the morning. 

      My joint pains come back as my T3 wears off, T3 only has a half life of about 8 hours (some say more, some say less). While I can keep my T3 at optimal level during the day it is all  gone after eight hours sleep. When I first waddle to the bathroom about 7:00am, I can feel pains in my legs but at 7:00am I take my Armour which gives me T3, I return to bed and within half an hour I have no pains at all and I am ready to get up and face the day.

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    • Posted

      I do have HYPO, but I find the muscle and joint pain eases off by afternoon, but it has worsened since I have been instructed to gradually leave off Prednisolone. I am also taking Bisoprolol for the Afib but the problem is that it slows down the thyroid . I take NDT 3 times a day which has all the hormones in it, but I am also taking 25mcg T4 at night. My feet are very painful when I get up as I have mortons neuromas on both feet and my toes all swell.
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    • Posted

      I would recommend finding a private physio who is also a Pilates teacher, just until you know what you're doing. My physio did private Pilates classes of 3 people and recommends I don't do some Pilates exercises because it will aggravate my shoulder (I have a 'muscular imbalance in my shoulder from working at a desk/computer for 25 years', it is particularly a problem for me due to hyper-extensive ligaments).

      On a separate note, I've had acupuncture to combbat knotted muscles. It works a treat when the physio combines it with deep tissue massage.

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    • Posted

      I now go to the classes at my local leisure centre. I went to a few to try them before I found one I liked. It does sound like you need to be careful though, hence my recommendation you get a physio who is also a pilates teacher.
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    • Posted

      I wondered what the pains in your legs were like. Are they burning pains or sciatica type pains? Are your legs numb or is there any tingling present at all?

      It is good that you are getting some relief from this pain after taking T3, I was wondering how this comes about?

       

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    • Posted

      It's hard for me to describe it because I never had pains before I had to take thyroid hormones. I can only say that it makes you feel as if you are 100 years old. It's not a burning and I never had sciatica and there is no numbness. I guess it is like if you rode your bike or a horse for a day when you are not completely fit  -  and then you try to walk the next morning. There is no strength in them.

      How does it come about? You need T3 to get to your cell receptors. You need to have plenty of T3 available and no reverse T3 blocking its entry into your cells. It is the T3 which gives you energy, T4 (which you get from Levo) is just the source material.

      Oh, and look in your PM box, I wrote to you regarding how to monitor your T3, I can't put it in the public forum because.....I dunno.....they think you are advertising (which I am not), just trying to tell people how I did it - there are other ways.

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    • Posted

      Do you also get pain in your wrists which some name as Carpal Tunnel syndrome and I find it does not help to excersise the wrists in fact I wear bands to give my wrists support as if I lift anything it could strain them even more. The knuckles too on the hands are painful and my shoulders too are painful in fact pain appears to be in all the joints and can travel along a nerve in between. I had acupuncture in my lower spine and never again as it set off all the rest in a very painful way.
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