Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hi all my Endo said as my graves is not so straight forward he would like to see my every ten weeks instead of five so he can watch my levels over a longer period, so I had some bloods done on the 4-1-12 and my TSH was 31 so great (not) I'm on the way back down again! So I asked my doc (not my Endo) as he was the one who told me my results of I should stop my carbimazole and he said no cause it will just fly back up!! I don't understand If I'm going underactive again then surely I should stop?? I'm so tired I can't get out of bed till 13:00 and even then it's a struggle :( iv tried to get in touch with my Endo and left a message with his secutary but they haven't got back to me yet! I don't see him again till 5 match so if I carry on taking the meds till then il be way under!! Anyway thanks for reading :)
Ideally the amount of ATD taken to keep the Free Ts at the places where to feel the best there at, is usually less than 5 mg.
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I would be really curious about your labs, historically, like since you were diagnosed with Grave's. Just to see a pattern. That is QUITE the overdose if you got all the way down to 31 for your TSH. And also you describe a quick response to the meds.
Brans and I have a story of our own with hypo/hyper and I am just curious which anitbodies you have had checked. Could it also be that besides Grave's you also have HAshimoto's OR only Hashimoto's and when you were hyper you had Hashitoxicosis?
It could explain the very unstable thyroid hormones and the fast and intense respons to ATD.
I am living the HAshimoto's rollercoaster at the moment but when I was hyper they initially thought I had Grave's but never checked my TSI/TRab. However my TPO and TGab where very high and even higher 3 years back.
either way, I am sorry for your rollercoaster ride, it is exhausting, to say the least.
Up, down, up down from diagnosis in Oct 08 to May 09. At one stage TSH 29.7 Free T4 4.4.
My endo then started me on PTU instead, I started on a low dose, took it steady and I was much more settled.
Can you speak to your endo/gp about stwitching to PTU, this drug really saved my sanity
xx
I am actually sorry for just assuming that you know all this stuff and made you feel this way.
Right now I have to run around but I will take more time later to explain why we are asking all these questions with labs, etc. Promiss!
Just wanted to let you know that you should not worry about being dumb. I came here too having NO clue what alot of it meant and I am a nurse, for crying out loud, LOL.
BTW, it seems like Yorky has got a winner answer for you. Her story sounds closest to yours. Still TSH THAT high from meds, WOW!
I could have spelt that wrong, but, I know it's not far off lol
It's a much milder anti thyroid medication than Carbimazole, PTU can be used during pregnancy too.
I started on Carb went hypo, stopped completely until levels went hyper again, restarted on a smaller dose, went hypo, stopped completely, restarted on even lower dose etc etc for 7 months.
I didn't know what day it was. I was reacting just like you to Carbimazole, even the smallest dose I went hypo.
But, when I stopped it, within 7-10 days bloods showed I was hyper again.
I started a low dose of propylthyiouracil, slowly and steadily my levels started coming down.
I really hope this is the answer for you like it was for me.
Good Luck
Yorkylass xxx
First: this describes why you want your TSI checked:
*In Graves disease stimulating TSH receptor antibodies (also known as thyroid stimulating immunoglobulins or TSI) react with the TSH receptor (TSHr), which is positioned on the surface of thyroid, orbital, pituitary, dermal, and skeletal muscle cells.
The TSHr is the primary autoantigen targeted in Graves disease. The subsequent binding of TSI to the TSH receptor stimulates thyroid cells, ordering them to produce more of the thyroid hormones: thyroxine (T4) and triiodothyronine (T3), causing hyperthyroidism.* Copied from Elaine Moores website, copyright Elaine Moore.
Since the TSH receptors are all taken over by those pesky TSIs and your thyroid being mislead and makes oodles of thyroid hormone, your TSH drops very low. The Thyroid Stimulating hormone is not needed your thyroid does not need stimulation. Your body works with Free T4s and gets converted to the more active Free T3. Those two are the one to measure since they are the ones that your cells use to make your body function properly. If your ATD (anti thyroid drug) is taking care of lowering the out put the FT4/3 but your TSI is still elevated, those TSIs are still taking over the place off the TSH. Your TSH most likely will stay low, even when you are in good range with your FT4/3. So thats why TSH is not the best guideline to see if your ATD dose is working correctly. And that is why you want to know the FT4/3 always!
You want ALL your copies so you can start to find out how you feel at certain doses. I personally made a spread sheet with symptoms/feelings at different lab values/times/doses.
So that is the Graves explanation of why you want to know which numbers.
I have NO experience with the numbers like you describing. Frankly, it is the first time that I heard of such a fast and extreme shift in numbers. Although a LOW TSH is not the most reliable as a dosing tool, it sure does tell a story, especially when it is HIGH like yours. It says that you have been overdosed very much with your ATD.
I do not understand why your provider wants to check you LESS frequently, instead of more often. That way you can keep tabs on the shift BEFORE it gets up to 31 or god forbid 100! I shifted fairly fast too (nothing like you) and my provider checked me every two weeks.
Now, my story is this, and that is why I wonder about yours. When I was diagnosed in May or June 2011, I started MMI and by the end of November I was totally euthyroid, TSH, FT4/3 although FTs on the very low side but I felt great there. In between I had some rollercoasting also because of transient symptoms between dose changes. Going into remission from Graves THAT fast is very un-average and I havent heard anyone who did on this board.
Now in my case, my TSI was never checked. Very dumb, not to do this if you are an endo but that was what it was. I educated my self and by then I was already way into MMI treatment (lowers the TSI too) and some other lab issues (different story). However, my TPO and TGab WERE done and were very elevated. These AB can be present when you have Graves but are much more prevalent when you have Hashimotos (a AITD where eventually you will become hypothyroid). Some people have Graves AND Hashimotos at the same time. I am not sure if I have Graves (TSI) causing AB but I for sure have Hashimotos (diagnosed 3 years ago). In Hashimotos your thyroid just gets destructed by means of AITD. Graves in it self is more the problem that the TSH receptors are being mislead.
From what I understand, and I want to put the disclaimer that I am in the middle of educating my self and by no means feel that I am an expert, is that if you have both Graves and Hashis it is very hard to find the right dose because all these AB have very different mechanism in which way they screw up your thyroid. You can get hyper too from Hashis, especially in the beginning when your thyroid is so inflamed and is being destructed by the TPO AB and is dumping thyroid hormone. Now from what I understand is that if you treat this hyper phase with ATD, you very soon will get to the hypo stage. Way sooner than if you only or also have to balance the effects of the pesky TSIs/Graves.
So on a different night I will explain the workings of those TPOab and TGab but you might understand now why I am wondering about your other thyroid antibodies. Especially if you have both for Graves and Hashis, chances are that you can more rapidly cycle from hypo to hyper and again and again. I also understood that if you only have Graves that your TSI is generally much more higher than form someone with both Graves and HAshis, which would also explain the fast response to ATD. Less TSIs to kick out of the way and rapid response to ATD.
So again, this is just me philosiphying for you, based on my own experience and starting in depth research on Hashis. There is this lady here, forgot her name but her avatar is a photo of her with glasses, I think she has a combo too. She might be able to tell you if this happened to her or if my thought process here makes sense.
By any means, if anyone wiser than me has something to correct me on, PLEASE do. After all, I have a thyroid brain too LOL.
And for the very simple route: I still thought that Yorky had a very good simple and easy tryable solution, especially since her story sounded like yours. I just wanted to explain my earlier questions for you.
Eitherway: start getting ALL your labs and ask your doctor why he is not checking you MORE often in stead of less.
Okay, I am going to try to get some sleep now. Lets see if I can.
Keep us posted if only for the fact that we can look at that cute little monkey every time you post!