Can anyone help? Hyperthyroidism

Thank you so much for your info Christine! Seems like we have very similar symptons, can't wait to get this sorted. The sad thing is I'm only young 29, and this has been effecting me years now.. Just need it gone.

I will keep on track with the website as I got the best info form here so far. Does the medication they give for it have any side effects? 

Thanks xx Hope your recovery too! xx

Hi Lucy, it is well documented that stress can be a trigger for this disease so yes the stress caused by moving house could well have triggered your thyroid problems.  Stress has certainly been THE or definitely a contributing factor to my hyperthyroidism/Graves.  I doubt very much that no-one goes through life without having had some stress, unfortunately it woud appear that there are those of us whose thyroid hormones can't cope with it and we are some of them !  I have had a lot of health problems throughout my life but this is the worst, if only because it's been going on for so long, let alone all the very nasty symptoms that come with it and in my case just don't seem to have any long periods of time when I feel 100% and I think that's because "they" (Endo and GP's) haven't managed to get the dose of medications right yet and also because they have failed to do the follow up patient care that each of them thought they were doing between them but in actual fact neither of them were - a total lack of cummunication between the Endo at hospital and my GP at the medical centre !  And the more I read on this forum about Endos and GP's the more I am realising just how many people suffering with thyroid disease are not being treated well enough.

Christine

Dear Christine

Thank you for your very helpful reply.

I know what you mean.

How long did it take you to get some relief and to feel better. All this is new to me and I feel lost.

Do you know why depression and anxiety are amongst the many signs and symptoms? Does the thyroid affect the brain at all?

Thank you

Lucy

Hi Lucy, the thyroid affects everything !  Every cell in our body depends on the thyroid gland so if the thyroid isn't working well then nothing in our body, including the brain and all other organs (including eyes with many) isn't working how it should.  I've had to read up a lot on the thyroid and joined this forum and another one to find out more and educate myself.  As many others suffering from this disease will tell you, the Endos and GP's are not very forthcoming with information or even forthcoming with a list of vitamins and supplements that we need to take to help our bodies regain some stability.  As I have said, I was diagnosed in 2013 but in hindsight I think I have had this for many years prior but in 2013 I could no longer cope with the frightening symptoms, the worst of which were become more frequent by that time and were:- rapid weight loss (although I was eating well), extremely rapid pounding heart, heat intolerance (couldn't bear the heating on although it was cold), breathlessness (couldn't go up a flight of stairs to bed without gasping for breath or walk for more than a few minutes), anxiety, overwhelming panic attacks, phobias, racing thoughts, extreme tiredness (needed to take naps to cope), muscle wasting and general weakness (could hardly lift the ironing board !!).  Upon diagnosis (after telling my GP of the symptoms and blood tests results) she immediately prescribed a drug called Carbimazole which she said woud sort out the rapid heart beat and anxiety and in the meantime woud make me an appointment to see an Endocrinologist, which she did and I saw him about 6 weeks later (still taking the Carbimazole).  I saw him about 6 times at the end of which on the last appointment he gave me another drug called Thyroxine to be taken along with the Carbimazole - a procedure called Block and Replace.  He then handed me back to the "care" of my local GP who he said would call me in every 6/8 weeks for blood tests to make sure the medication was correct and was keeping my thyroid at normal levels !  I never heard from my GP for the next 14 months - any blood tests I have had have been at my initiation because I have phoned the GP and asked for a blood test to be done because I had felt symptoms returning !  Because of the negligence of my GP, I am now being treated for HYPO thyroidism, blood results are showing that I have gone from HYPER to HYPO quite severely and have been feeling extremely unwell again and I have been referred back to the specialist who I see in November.  This time I have "armed" myself with a notebook/diary and intend asking lots of questions about things I have noted from other members of this forum.  It's an awful disease and I wouldnt wish it on my worst enemy.  I'd rather give birth than have this because at least I know the labour would end eventually !!  I'm sure there must be some on this forum who have some positives for you Lucy, I just haven't reached that stage yet but I am hopeful.  All I can say positively is that the Carbimazole DID give me the relief I needed so badly when I was first diagnosed.  Have they given you any medication yet and what are your symptoms apart from depression and anxiety - and remember that you are not alone with those two !

Christine

Gosh that is awful. I am really fed up with this horrible condition.

THank you for your reply a lot of things that have happened are beginning to make sense to me now. Especially about feeling scared.

Please could you tell me why the dr made it worse . If I understand you correctly, sorry my Engsih is not good et, are you saying that it was because of the lack of blood rests that your condition passed unnoticed from one stage to another.If that iis so then that is  diabolical.

Please can you tell me how often I may need my bloods montoring. I am so scared of these drs now.

Lucy

Yes, my blood tests have not been done as often as they should be and when they have been done and the doctor has said they were in the "normal" range which apparently are questionable ranges.  Try not be scared Lucy, that wont help your anxiety and I know ony too well that that is easier said than done but if you have been diagnosed with hyperthyroidism/Graves you should be on medication now which WILL help alleviate some symptoms.  Blood tests should be carried out every 4/6 weeks and you should always ask for a print out/copy of your results and if you post them on here those members in "the know" will tell you if indeed they should be classed as in the normal range or not.

Christine

Christine

Hi Christine

Thank you.

How did you find out that the results were questionable?

What did you do when you found out?

Lucy

Christine, I am sorry you have had such a rough journey.  I belong to another thyroid board as well as this one where the members diagnosed with Graves disease want to keep their thyroids and most have been very successful in recovering and going into remission.  In North America, doctors and Endos really push Radiation therapy or thyroid surgery and then replacement of thyroid hormone with Levothyroxine.  Those are not great choices as they do not get rid of the antibodies that cause Graves disease and in fact Radiation therapy worsens it.  Also, they do not know much about Methimazole (Carbimazole in England) dosing and often start patients on too high a dose of meds, or they dose by TSH result rather than by Free T3 and Free T4 results.  Many do not do those three tests routinely on follow up and they should.  Many do not test antibodies and especially discontinue the meds when patient's lab tests are normal but not their antibody tests.  In my case, my Methimazole dose was 10 mg and it immediately normalized my FT3 and FT4 but my TSH remained at 0 for two years until I read a research article by an Italian endocrinologist about the benefits of using L-Carnitine in hyperthyroid patients.  I started on 3,000 mg and then tried different types of Carnitine and my TSH began to rise and my other two lowered more.  I was tested and found to be deficient in Carnitine as I believe most hyperthyroid patients are.  I was also low in vitamin D so added vitamin D3 1,000 to 5,000 mg and Magnesium 200 mg.  I was able to start decreasing my Methimazole then and currently am only on 2.5 mg a day.   Block and Replace is very popular in the UK and is not used so much in the Western world.  However, the Cleveland Clinic developed something similar but not such high doses called Add back therapy.  They use Methimazole until the patient's levels lower and the dose of Methimazole is 5 mg or less.  Then they add a very low dose of levothyroxine like 25 mcg at the same time that the patient takes 5 mg of Methimazole.  This helps to normalize the antibodies and when the patient is off meds altogether is more likely to stay in remission.

 

Hi Lucy, I was in no position to question my results knowing very little then about the "ranges" because I had never asked for copies of the blood test results before.  It was only on the advice of other members of this forum and the other forum I am a member of, that I started asking for copies of my blood results.  That said, I KNOW my body and when I tell the GP I don't feel well and some of the symptoms have returned, the GP should listen to what I have to say and NOT belittle me/my symptoms by telling me that I am fine because the results are within "normal" range.  There is a high and low WITHIN the normal range and mine were high "normal" in one and low "normal" in the other.  Here in the UK (where are you?) only TSH is routinely tested and we are lucky if T4 is tested.  Apparently there are other tests that should be carried out like T3 and anti-body testing but as there are financial implications involved in these further tests, they are not done !   My last 2 blood tests have shown that my TSH and T4 are actually OUT OF THE RANGES and the GP has had to step in i.e. because I NEED treating with LevyThyroxine NOW, my condition won't wait until my appointment with the Endo in November, the GP consulted the Endo after my last blood test and he has prescribed a dose of Levy Thyroxine to try and stabilise my condition (I am also taking the Carbimazole).  I blame my GP for my present condition, her lack of knowledge, her dismissal of the symptoms I was feeling because she went by the within range "normal" result of a blood test done in July and stopped all medication to "see how my thyroid re-acted" !!  Well, it reacted so badly that I am now back to square one, ALL HYPER symptoms returned within a week resulting in me almost passing out on more than one occasion and being so scared AGAIN.  And I am now HYPO, freezing cold all the time, existing on 2 or 3 hours sleep (if that) a night, feeling sick most days, exhausted and generally feeling unwell.  Be ascertive with your GP's Lucy, it's your body and you and you alone know when you feel well and when you don't regardless of what the blood results say or how your GP interprets them !!

Christine

Wow!

I am in London .

Did not realise all this until I saw this forum.

I will definitely go back now and ask my GP why he has not done some more tests.

Why do you feel sick and cold etc? I feel the same but why?

Lucy.

Because the thyroid isn't working properly Lucy.  You've either got hyperthyroidism/Graves or hypothyroidism/Hashimotos.  Feeling cold, sick and tired are just a very few of the symptoms plus the ones mentioned in my previous posts and plus many many more !  I understand from what I have read on here that there are about 300 to 400 symptoms.  I have MANY but not between 300 and 400 as far as I know.  I have around 20/30 symptoms that I know of.  Read about it - google the thyroid and ask questions on here, you will get some replies and help.

Christine

Thank you Christine.

My mom had Hashimotos.

Just researching it now.

Lucy.

 

Dear Christine

Your reply was very helpful.

Do you know how long it will take to feel better?

Lucy

 

Have you got the details of this F/B group please.

Where are they based?

Thanks

Lucy

Hi Lucy, I began to feel better from the worst of the symptoms which for me were the racing pounding heart beat, anxiety and breathlessness about two weeks into taking the Carbimazole (40 mgs) prescribed by my GP and then saw the specialist a few weeks later.

Christine

Hi Lucy

I also have hyperthyroidism caused by Graves Disease but wanted to let you know that there is light at the end of the tunnel sometimes.  I was diagnosed by my GP and immediately refered to an endocrinologist and started on Carbimazole and Propanalol.  My care continued with my endrocrine consultant, and will continue for life as hyperthyroidism is NOT cared for by primary care physicians (make sure that your care is not transfered back as this is not normal protocol).  My Propranalol was stopped after about 3 months and my Carbimazole was continued for a further 18 months whilst I was having regular blood tests every 4/6 weeks.  I had titration therapy where your dose is gradually reduced over time.  At the end of my 18 months of Carbimazole alone my consultant advised stopping the medication and to see what would happen.  My blood results came back normal which meant that the disease had gone into remmission, however I will be monitored for life, and there is every prospect that the disease will return at some point.

I hope my story gives you some hope, as its not always a bad experience.

Faye x

Hi Christine

I was so sad to read your story, it is clear that protocol has not been followed as your care was passed to primary care when hyperactive thyroid conditions should always be treated by secondary care. Hang in there as it is normal for people to go hypothyroid when induced by anti-thyroid meds.

Faye x

Dear Faye

Thank you.

I was wondering if you had a list of the anti thyroid  meds?

I feel at sea with this condition and feel like I did when this started.

I was in close contact with someone who had stones in her salivary glands. I wss at her house for several hours keeping her company on a voluntry basis and had several cups of tea there.

I feel angry with myself for taking the risk of going there and spending several hours with her. I just felt sorry for her and wanted to make sure

she was safe as her husband had gone away for the day and she was subject to hypoglaemic attacks due to insulin dependant diabetes.

I hope it is ok to give all these details.

Lucy.

Dear Faye

Just to say  thank you so much . Yes you definitely have helped me to see some light at the end of this very long tortuous tunnel.

Today has been a particularly bad day I am afraid. I mention that in case others experience good days and simply awful days.

I feel very fortunate to be on the forum and so well supportd by everyone..

I am puzzled because the thyroid screening results have varied so much. Why does this happen?

Does it mean that the thyroid problem is in remission ? BTW I still had the signs and symptoms. I just cannot understand what is happening.

I don't understand why the blood tests can be so variable almost normal yet feel so ill.

How does the dr make the decision whether to start someone on medication or wait and see?

Should I be treated or not that is the question I keep asking myself. Is it better to have the source of the problem that is the thyroid partially or completely removed removed or partially removed OR  is it best to have the gland 'knocked out' then rely on thyroxine for life as someone has suggested to me ?

What a dilemma for the drs as well as for myself.

I realise that I have to make the decision myself but it is helpful seeing if anyone ellse has had or having a similar time.

My research into family has shown that there is a high prevalence in my family in the US and the UK.

Thank you

Lucy.

Hi Lucy

The preferred anti-thyroid meds in the UK at the moment is Carbimazole (not if you are pregnant though). Blood tests can vary from each person, this mat be due to your 'normal' not being someone else's 'normal', someone may sit happily at a high level and have no complications, however for someone else they may need to run at a much lower level.  Can you please bear in mind that every lab will have its own 'range' for normal results, these range's do vary and they are specific to the lab your blood is tested at, so please do not compare to someone else's result who may have had bloods done at a different lab.  My T4 when first diagnosed was 69, this is very high but I had been coping very well with this high level.

What you decide to do is always your decision, as with all healthcare ailments.  But whatever you decide you will need to be euthyroid in the first instance, therefore it will need to be in a normal range.  I chose to stay on anti-thyroid meds as they suited me, but they may not be for everyone.  However if I have a relapse I have already choosen to have surgery as I will not be able to stay on the meds again.

Also remember with Graves in particular, this is a remitting/relapsing disease so therefore you can be up and down prior to any medications or other interventions.

Faye x  

Wow wow wow.. I never relised it was remitting/remission.. I knew if you had it once it was. As my results also Lucy have been up and and normal but mostly up.. So they are scared to start me on anything until they do a scan of my thyroid and more tests in a few weeks.. It's waiting and wondering that kills us.. We feel everyday but nothing helps. Hardly enjoy doing normal things anymore, struggling everyday.. I hope you get some answers too Lucy. I got all my tests results printed and I'm going to see a naturopath in the mean time I think. I need some relief. I get the vibe that GPs don't know much about this. Who knows. Taking my lab results to my brother who is actually a lab scientist maybe he can make sense of it as I've looked at the results and it doesn't look normal bouncing up and down.. Does any know roughly if you t4 is way up and tsh is siting lower.. Is that more hyper as that's what they think. Possibly early days they think.. Will they need to see me lose more weight then I have before they start actually helping me? Ahh soo many questions but I feel you ladies are the only ones who know anything and support me.. I thank you all so much.. So much information on this forum.. Xxx

Hope you are all travelling well. Xxx

Jodie X

Hi Faye

Thank you so much for your message, much appreciated but has now given me more cause for concern and confused me even more regarding care of thyroid patients.  It was the specialist Endo himself who said he was referring me back to my local medical centre for them to arrange the 4/6 weekly blood tests, after seeing him for 5 or 6 appointments and after he had initiated the Block and Replace therapy.  Why would he do this if it isn't the correct protocol? Also, reading many of the posts on here, it would appear that many patients are also having blood tests carried out by their local medical centres (GP's) after their appointments with their specialist have ceased.  Also, many patients seem to be self-medicating on this NDT, vitamin supplements etc.  (by the way I don't think I'd like to risk self-medication with regard to any thyroxine  medication but I have started taking Vitamin B12 supplements).  I think the thing I am most angry about is my GP stopping both Carbimazole and Thyroxine suddenly and it having the affect it did on me AND at the time of doing so, she dismissed symptoms I had concerns about.  I have also since learned that Carbimazole should be "weaned" and not simply stopped altogether, in fact it states this on the leaflet enclosed with the Carbimazole medication !

I would be grateful for any further thoughts.

Kind regards 

Christine

I agree that sudden stopping or discontinuation of medication is not a good idea and in fact is unhealthy and would cause a lot of problems.  I was always weaned by lowering meds 2.5 mg at a time.  My Endocrinologist decided the medication dose and I decided the supplement dose based on medical research articles I read or visits with a naturopath or directions on the supplement bottle.  Most supplements I took, I asked my GP to test my levels for before I started so I wasn't doing this in the dark because my levels showed I was deficient in them.  Most hyperactive paitents lose a lot of vitamins, minerals and amino acids from their bodies when they are running hyper, that's why they need to be replaced..  Doctors are not trained in the use of supplements so they cannot approve or disapprove of taking it but a person needs to use some common sense, i.e. checking for deficiencies.  Hyper patients are particularly deficient in carnitine, vitamin D and magnesium.  Those with eye disease are also deficient in selenium.  Also many docs are stopping patient's meds when their TSH, Free T3 and Free T4 tests normalize.  This is called being euthryoid.  However, if they stop meds when they are euthryoid but their antibodies have not normalized, they will go in and out of remission.  You need both normalization of antibodies and normal thyroid results before you discontinue your medication.  Staying on a low dose of meds after your values normalize, helps to lower antibodies and achieve true remission.  There have been some patients doing the Add back protocol who have been in remission 10 years or longer.