Graves

[Neijam]

I seen someone had responded to another persons question regarding graves disease still being active after a thyroidectomy,is this true and how would it affect one as far as symptoms go

[shaws Administrator]

According to this link, if I've read it properly a thyroidectomy means you will be hypo and be on medication for life.

If it is a partial thyroidectomy:-

If only part of the thyroid is removed (eg a lobectomy or sub-total thyroidectomy) then you may not need to take thyroxine after the operation, as the remaining part of the gland will often be able

to produce enough T4. A blood test will be done to check on this after the operation.

british-thyroid-association...

[Neijam in reply to shaws]

Thanks for the link

[Fruitandnutcase]

Graves Disease is an autoimmune disorder that makes your thyroid become hyperactive and I think even without your thyroid you probably still have the antibodies that cause Graves, they just can't affect your thyroid any more.

Not sure if / when or even how you can reduce or get rid of the antibodies though.

[marram]

Graves' disease is an autoimmune disease which attacks the thyroid, and/or the eyes, and also affects the pituitary.

Sometimes the eyes are attacked at the same time as the thyroid, sometimes long afterwards. When it attacks the thyroid the antibodies (Which are Thyroid Stimulating immunoglobulin) stimulate the thyroid making it produce thyroid hormones more than are needed by the body. It also at the same time suppresses the normal TSH which is produced by the pituitary.

When it attacks the eyes it can damage the surface of the eye, causing dryness which can be reduced by artificial tears. But it can also attack the back of the eye, damaging the muscle making the sufferer have double vision, and it can also lay down fatty deposits at the back of the eye causing the eyes to bulge forwards, sometimes so severely that they cannot be closed properly. Surgery can be done to improve this.

When the thyroid is made overactive, the standard treatment is carbimazole or Propylthiouracil to suppress the thyroid. If this does not work, then the thyroid is either surgically removed or destroyed with RAI - though they do RAI less often with Graves' because it can make the eye disease worse or even set it off.

You will notice that they do not deal with the actual disease, just the thyroid or the eyes. So the actual disease is still there. It cannot attack the thyroid any more, but what it still does is suppress the TSH and also can still attack the eyes.

How will this affect the post-TT patient? Well, first of all, it is suppressing the TSH, which they used to think was just temporary but recently have discovered that it continues for a long time - indefinitely with some people. So, when the GP tests your TSH to assess your thyroxine replacement, he will end up giving you far too little as he will be assuming the TSH is a true picture of how much thyroxine you need.

Secondly, even if you have not had Graves' Eye disease, or thyroid eye disease (TED) as it is often called, you may well get it at a later stage, so you need to be aware of this so that it can be dealt with.

I am a Post-TT Graves' patient. I stopped thyroxine completely last year because it made me ill and I was preparing for alternative treatment. My TSH went no higher than 1.4 even without any medication!

I also got TED recently - I found out when I went for a routine eye test and my right eye had changed dramatically in a short time. I mentioned that I had had Graves' and she referred me to an eye specialist who did antibody tests for Graves' and they were high, showing that I still have the disease. My TT was 33 years ago! I am being treated with Selenium and eye drops, and at my last visit there was no further change.

The strange thing is that in some people the antibodies can reduce after TT and do not come back - although there is a period in your sixties when there is a possibility of relapse.

I do hope that this puts you in the picture and also explains what happens.

Marie XX

[Fruitandnutcase in reply to marram]

Wow, that's impressive research Marie, thank you.

[Neijam in reply to marram]

Thank you very much,my tsh was 0.31 so would that maybe suggest antibodies could still be attacking my piturity gland

[Hidden in reply to Neijam]

Hi I totally agree with Marie, you have autoimmune thyroid disease but you now have no thyroid. You can also have gut and bowel issues, and you will struggle with your peripheral metabolism, this is linked to your autoimmunity. You are also at much greater risk of other autoimmune disease. TT patients need to keep an eye on their electrolytes, B12, Vit D, iron, cortisol and in my opinion we do better on natural thyroid which would give you what your own thyroid gives you, T1, T2, T3, T4 and calcitonin. I believe TPO antibodies usually drop post TT and my TgAb are also zero now (which is good as I also had thyCa) and my TRABs seem to be quiet for now and my TED is much better, but it could always come back.....

But run like the clappers from any doctor trying to dose you by your TSH, you need about 1mcg per pound of body weight roughly - or a TSH below one, and a T4 in the top quartile of the range and a T3 at the top or just over the range.

Keep asking questions.

Rebecca

x

[Pegasus9492 in reply to marram]

I am in a situation now where I am up and down, just had endo readings of suppressed TSH of 0.02 and a free T4 in the normal range of 20.5 whatever that means. I have TED my eyes are not to bad one day but really sore and sometimes bloodshot the next and they continually water. I am now into 14 months of carbimazole and the endo has said the due to my age (70) that I will probably have thyroid trouble for the rest of my life so she recommends that I have RAI. I am male and this seems to to be more of a illness for women. Anyway to what I have read on here RAI doesn't sound to promising what do you think?

[marram in reply to Pegasus9492]

Oh, dear, RAI is CONTRAindicated where TED already exists, it is known to make it flare up, last thing you need, ask for a referral to an ophthalmologist for the eyes, they can give you drops which will help.  

I cannot believe that an Endo does not know this, but then again, Graves is not actually an endocrine problem, it is autoimmune.  They like to destroy the thyroid instead of addressing the real cause, the autoimmune problem.  

May I ask if you had a 'flu jab at any time prior to being diagnosed?  I was first diagnosed with Graves' just a few months after having my TB jab, at age 13, and after my thyroid was removed at age 37, things were very quiet, no eye problems, then I had my very first 'flu jab and six months later I started having eye problems, and my Graves' antibodies were very high.  It was recognised in the course of a normal eye test, and I was referred, not by my doctor, but by the optician, and diagnosed with Graves' Eye Disease.  (A more precise name, since the eyes are attacked separately from the thyroid, since it is an autoimmune disease, not a thyroid disease.)

Wouldn't it be nice if they could spend a bit of money researching autoimmunity instead of just zapping or chopping out the thyroid, which is not at fault!

It might be worth mentioning that you are concerned about RAI because of your eyes.  They like it 'cos it's cheaper.

[Pegasus9492 in reply to marram]

Thanks for that, I forgot to mention that I was also under the eye hospital and that I have both ointment and eye drops, but they say that nothing can be done until the thyroid is under control and the endo says that RAI will do that. So it's a catch 22. I have been having a flue jab now for 10 yrs with no prior trouble. However I had a really bad virus about 18 months ago and it was downhill after that I kept going for four months before crawling to the docs, diagnosed with graves. I think the 18 month period of carbizimol is coming towards the end and they want to zap the thyroid. They have just upped my carb to 20 m per day

[glo42]

A very interesting and informative thread. Thank you everyone. Keep well. xx

[Heloha24]

Thanks everyone, Marram it's really interesting and helpful what you have said. I was diagnosed with Graves in 2012 and the level of thyroxine I was producing was through the roof. My Endo went on to put me on a really high dosage of Carbimazole to get the my level back to normal range and I have been on the "block and replace" regime pretty much since 2012. I had a week off the meds as my endo wanted to see if my thyroid had 'reset' itself. It hadn't so was back on the meds. I also have TED and have been seeing an ophthalmologist and oculoplastic surgeon about this but they wont do anything about my TED until my thyroid condition is "sorted" by which they mean surgery to remove it, even though I've been euthyroid for years and my TED has reached burnout! I'm really worried about the surgery (TT), will my antibodies change, am I opening the floodgates to other autoimmune conditions, weight gain, being underactive forever and all that entails....

It sounds like you were in a similar position to me, do you regret having your TT? I want someone to tell me that yes I'm doing the right thing or no I wouldn't have surgery if I were you as I'm really in 2 minds.... cant I just stay on the Block and Replace regime forever?

Best wishes.