Graves confusion?

[jojop517]

HI there I am a 37 yr old female with 2 children (6 and 2) I discovered I had mild hyperthyroidism last April 2008 (levels T4 = 26 and TSH 0.01 - as the condition was mild I was monitored and within 3 or 4 months my T4 came into a normal range (around 15) although my TSH was still a bit low (0.02) Around January this year I started to feel very unwell and I scheduled an appointment to check my bloods.  I was told that my T4 was now over 100 and that my TSH was non-existent (at the time the dr said it was thyroiditis and that I showed negative results for the Graves antibodies) I started straight away on Carbimazole at 40mg.  after about 2 weeks I felt much better and the following 2 weeks absolutely great! However, I have been concerned about my eyes as they have been puffy since about a week into taking the Carbimazole and they have begun to get watery.  I am petrified of developing TED so I asked my consultant to do my bloods again and he said that this time it tested posotive for the antibodies suggesting that the underlying cause probably IS Graves.  He has told me to get my G.P to refer me to an opthamologist.  In the meantime my bloods after a month on 40mg daily of Carbimazole have changed dramatically to T4 12 and TSH 0.01 so my Carb has ben cut down to 20mg daily - I now feel exhausted and tired my heart rate is low about 65 BPM at rest compared to the 95 + BPM when I was overactive.  My feeling is that I am probably now entering a hypothyroid stage and since I have read that going very hypo can exacerbate TED I am wondering whether I should ask my Dr to go on block and replace ?  Also, is it common to drop by so much in such a short space of time?  And why the confusion about the underlying cause RE: the antibodies etc?  I have a US scan on Monday to see if there is any inflammation of my thyroid.  Many thanks for your advice.

[jojop517]

Thanks for your message cbread, it's great that people take time to reassure and support others - I wish you the very best with your condition and hope that things get better for you as soon as possible - best wishes

[cbread]

I have TED and have been told there is nothing you can do about it other than surgery/steroids for worst case scenarios but for anything non-vision threatening they just monitor you. But you should see an opthamalogist as soon as possible and one that has treated thyroid eye disease.  Also, keeping your body euthyroid or at normal levels helps prevent it from getting worse...but they are two separate diseases that follow their own paths.  I was relatively stable on anti-thyroid meds before my TED reared it's ugly head.   Most of us with ted try to stay hydrated, use eyedrops, take flaxseed oil and pray for the best.   Hope you do not join our club!

[jojop517]

Hi there - thanks for your message, I appreciate you taking the time to come back to me on my questions.

I have read a couple of times now that it is important to keep the TSH suppressed to some degree and not go too Hypo as this can worsen the development of the eye problems.  This is why the RAI treatment can bring on TED.

The comment about the anitibodies for TED being different is helpful as I wanted to find out if there is a definite answer yes or no to whether or not I am developing TED when at the moment the symptoms are quite minor.

Thanks again.

[tm514]

It is not unusual to have thyroid levels change dramatically on anti-thyroid drugs.  I was on Tapazole for less than a month and went from non-existent TSH to hypothyroid.  It isn't surprising your heart rate dropped so much - hyper will do that to you, and 65 is much more in the normal range.

I have Graves and Graves Eye Disease as well.  I don't remember anything about going hypo making it worse.  I actually had the eye problems before I ever thought about a thyroid problem.  

As I understand anti-bodies, it takes a while for them to build to levels that show in a blood test, so maybe that is why there was confusion.

It is hard to say whether you are developing TED, but the tearing is one of the symptoms.  Also, if you have a constant dry, scratchy feeling on your eyeballs.  Those symptoms often start before the bulging eyes and other problems become evident.  There are blood tests that detect the GED/TED antibodies - the antibodies are different from the ones that have whacked out your thyroid.  If you continue to have eye problems, find an ophthalmologist (usually a neuro opthalmologist or ophthalmic reconstructive surgeon) who sees a lot of patients with Graves.

I hope you find some answers and feel better soon.

[ChitChatNine]

Welcomer to our community!  I'm sure others will jump on with some thoughts for you .. I am not an expert as it relates to Graves, moreso nodules and thy cancer, but WELCOME ABOARD!!!

C~