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Finished my treatment for Graves Disease, what to expect?

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Old 01-10-2012, 02:29 AM   #1
Join Date: Jan 2012
Location: Harlow, Uk
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SteffyRose HB User
Finished my treatment for Graves Disease, what to expect?

I was diagnosed with Graves disease back In May 2010 after a long struggle to work out what was wrong with me! I was at dance school and was struggling with my energy and getting into class. I lost a lot of weight - which my dance teacher praised me for! But I was finding it harder and harder everyday to get up and get into class on time (even though the night before I had gone to bed at 5pm!) I was constantly sleeping and constantly tired when I wasnt sleeping! I was also constantly hungry, very irritable and in my experience becoming quite insane!!
Finally after a year of this and the doctors just thinking I was depressed I asked for my bloods to be checked for any thyroid conditions! My bloods camer back as TSH <0.1, free T3 11.0 and free T4 28.9. Thyroid autoantibodies 225.
I was put on 20mg of carbimazole and 100mcg of thyroxine.
The past few years have been a massive roller coaster! And I don't think I even remember what it feels like to be "normal" any more! But even though I have been on the medication I have never quite felt amazingly well for a long period of time!
In August I saw my endo and she decided that I would stop taking my meds from 1st of jan 2012. Which I have done so, I also asked her for all my blood test results over the past 18months. She gave me all the ones she had (for some reason not all of them?)
From the results for my TSH it looks like ive never been stable and my results have been all over the place...
TSH 04.08.2010 - 3.9
TSH 28.09.2010 - 3.4
TSH 02.11.2010 - 0.70
TSH 08.03.2011 - 0.63
TSH 18.10.2011 - 5.4 ( at this point they raised my thyroxine to 150mcg)
The range being 0.27 - 4.2

My endo told me to expect to feel crappy after coming off the meds... But I don't know what to expect? I have been off work for nearly a week now as the docs signe me off zafter I went to see them last week complaining about feeling very tired and needing to sleep. They did another blood check and this time it came up as TSH 1.7 which is normal so he said I'm fine but I am at a loose end now as I'm getting anxious about not being at work but then thinking that if I go into work it will make me worse again and I will have to have more time off of work. Everyone around me is telling me to stay off and rest but the longer I have off the more anxious and depressed I am getting. I am also worrying that this is due to my graves disease and thyroid problem as one of my main symptoms of graves disease - suffering with anxiety and depression!

I would like to know if this is to be expected when coming off of my meds and if it is going to get better or if this is signs of relapsing?

Please help if you can!!

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Old 01-10-2012, 10:49 AM   #2
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Re: Finished my treatment for Graves Disease, what to expect?

You are clearly not "normal". I'm sure your T4 and T3 levels are not optimal for you. The problem is that your doctor isn't even checking those levels and is looking solely at your TSH. This is a misguided way to treat thyroid disease all over the world, but it's even more common for NHS patients in the UK.

I'm truly sorry, but I can't offer any good solution for you unless you have an unusually cooperative doctor who will check your actual thyroid levels instead of the pituitary TSH level. There are thyroid patient advocacy organizations there. Perhaps you could contact one for better advice about finding good care.
Wishing you the very best.

Old 01-11-2012, 07:52 AM   #3
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Re: Finished my treatment for Graves Disease, what to expect?

I agree with Midwest1.

Quite honestly, most Graves' patients have suppressed TSH during treatment - this is due to the Graves' antibodies.

The fact that you still need thyroxine tells us that the Graves' blocking antibodies are now coming into play.

Those antibodies not only suppress TSH but, they suppress thyroid hormone production which makes the patient hypothyroid.

So, the fact that your body is producing measurable TSH tells us that your thyroid hormone levels are probably too low for your body's needs.....your symptoms surely indicate this.

Most people dealing with hypothyroidism have TSH 1.0 or lower if they are optimally medicated.

Graves' patients such as myself (and probably you) will often have suppressed TSH if they are optimally medicated.....all due to those antibodies.

On a "good" day, my TSH is .011.

I know that many thyroid forum members in the UK are at least able to get their FreeT4 level checked - I suggest you pressure your doctors to do the same for you.
Graves' 2007...remission 2009....hypo 2010

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