Marginalize Medication - Graves' Disease and Thyroid Discussion - Living with Graves Disease


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Marginalize Medication

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#1 Glamour puss

Glamour puss

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Posted 26 October 2021 - 12:52 PM

Is it just me.....ok so my levels where back up to 45 and was put back on Carville AGAIN! When I try to tell them it makes me feel worse it doesn't seem to matter!!! As long as my levels get back in the " NORMAL" range sick to death of this disease and they won't put me under anaesthetic with high levels so I can't win either way!! I was first diagnosed at 19 I am now 50! Feel worse now my levels are back in the normal range but still on the tablets that make me feel like crap!! Joints are worse...body's feeling like I've been in a fight but what do you do....anybody else going through this.....or is it just me... Don't want to take radio iodine don't really want to be taking tablets that make me feel much much worse! Help.....


#2 mmztcass


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Posted 26 October 2021 - 03:33 PM

Hello Glamour puss:


Welcome.  I am sorry to read of the difficulties of finding the balance with Graves' Disease and still struggling all these years.  


Here at this board we talk a lot about the need of eating healthy, whole foods and whole foods based vitamins and supplements.  Diets of organic and non-GMO.  Also using products for home cleaning and personal products to be exposed to less toxins, preservatives and anything from the environment which can cause issues.  And, of course, anything stress related can be a problem as well.  


So questions I have down below:


Is the word Carville meant to be Carbimazole?


Which thyroid levels is high with 45?  Do you have copies of lab work from the past few months that we can see a pattern of what is going on?  


Are labs of the Free T3, Free T4, and TSH being done each time?  How are the medicine being taken as, once a day, or several times a day for optimal results?


My signature down below can explain of the things I do to manage my thyroid health and I have had Graves' Disease since 2000 and I have been in a remission for almost two years.  



#3 Allies


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Posted 26 October 2021 - 03:43 PM

Hi Glamourpus, and welcome,

Sorry you are having a terrible time :(

From the info you provided (and the fact that you are in the U.K) i guess the medication is Carbimazole? (I've never heard of carville, is it a pharmaceutical brand?). Was the result of 45 for your FT4 taken soon after the Graves hyperthroid relapse? I'm assuming at some point in the past you were given a diagnosis of Graves?

If you want to share all your recent results: FT3, FT4, TSH and thyroid antibodies, in particular TRAB (TSH receptor antibodies), along with the reference intervals for these, that would be helpful :) The reference intervals usually appear in brackets after the result. Having said that I don't think the NHS is terribly keen on measuring antibodies once a diagnosis has been given, they can be a bit slack at measuring FT3 as well. Private testing can fill some of the gaps, 'Monitor My Health' offers a user pay thyroid function test for £29, it measures TSH, FT3 and FT4. I believe it is a self-administered finger-prick test ( https://monitormyhea...k/thyroid-test/ )

As it is though, I can only speculate based on what you have written, so the following may not be the case (but it does seem to happen on a fairly regular basis :( ) : What often happens is that doctors and endocrinologists forget that antithyroid drugs like carbimazole need to be lowered as thyroid hormone levels fall. With Grave's disease in particular meds, should NOT be adjusted according to TSH levels (because the TSH receptor antibodies themselves can effect TSH production), instead they should be titrated according to actual thyroid hormones (FT3 and FT4) . Sometimes as a result of this forgetfulness we can actually end up over-medicated and with thyroid hormones that are too low for our bodies to function properly, or even overshoot into frank hypOthyroidism :( HypO is very unpleasant, and could possibly be a significant part of the reason you feel so poorly :(

If you feel okay doing so, share your results here, and we can help you try to figure out what's going on, and hopefully what can be done about it :)

Allies :)

#4 mmztcass


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Posted 27 October 2021 - 04:42 PM

P.S. Glamour puss:


You can use the search to type in word(s) to find things related to your questions asked from any of the old threads/posts.  There's a lot of info to find out to balance the thyroid.  


{{{hugs}}} is for educational purposes only and should not be used as a substitute for consultation with your health care provider.

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