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[Sasalden1]

I am new to this forum but not new to the struggle of thyroid issues. In 2004 I was diagnose with Graves' Disease (TSH level was reading 0.0007) and was treated with Radiactive Iodine I-131. I was finally put on thyroid replacement almost 6 exhausting months later when my TSH reached up in the 80's. Over the past 2 years my TSH levels have been bouncing all over the place both hypo (63) and hyper (0.138). My PCM (primary care manager) refused to change my dose when I was hypo but wants to change my dose now that I am hyper. I am confused as to why the changes in levels with no change in dosing, but at the same time feel as though I am hypo and not hyper and really do not want to lower my dose. Is it possible my thyroid has come back to life after all these years? Has any one else experienced this? Thanks

[Nanaedake]

Hello Sasalden1, I don't know much about Graves disease but thyroid tissue can regrow or at least it can produce more thyroxine I believe. Were you referred to an Endo to get a diagnosis of Graves disease? I'm just wondering if you have had antibodies checked for both Graves and Hashimotos?

[Sasalden1 in reply to Nanaedake]

Hello Nanaedake, yes, I was referred to Endo for the diagnosis of Graves' disease. A mix between labs and an uptake scan was used to diagnose but have moved multiple times since then and have not been able to get a referral to see an Endo since about 2013. I did have another test done a while back, I believe it was a Thyroid Stimulating immunoglobulin test that was positive and a positive ANA which is being treated by a Rheumatologist. I will have to look back at some paperwork later to be sure what the actual name was.

[Nanaedake in reply to Sasalden1]

Ok, it sounds like you are already doing this, but always ask for and keep a record of your results. Have you got your latest blood test results along with the laboratory ranges? If you post them here people might be able to help. You need TSH, FT4 and FT3 at least. If you've got recent antibodies results that would help too. The more specific the information is the more people can help you.

Are you taking any medication in addition to levothyroxine? There could be interactions between medicines to bear in mind.

Also, are you staying on the same formulation of levothyroxine or have you switched?

[Sasalden1 in reply to Nanaedake]

My Latest blood results are not back yet as they were just taken 3 days ago. But prior to that was 19 June TSH was 0.132 (L) 0.465-4.68 reference range and the other lab was called Thyroxin Free and was 1.65 reference range 0.78-2.19. I found a Thyroid Peroxidase Antibodies-S for 2011 was marked H 67 with reference range of <60. I think My Rheumatologest might have done some of the other labs antibody labs so I will have to look through these records as well for more. I have stayed on the same formulation of levothyroxine for about 10 years now. My current dose is 175 mcg 5 days a week and 200 mcg 2 days a week. I like to keep to a schedule so I don't forget to take my medicine. Every morning I have an alarm set for me to wake up and take the levothyroxine. I then go back to sleep for 30 min, wake up and get ready for my day another hour and then eat breakfast and take the rest of my medicine (Nexium 20 mg, hydroxychloroquine 400mg, Vyvance 70 mg, and Bupropion 300mg).

[Nanaedake in reply to Sasalden1]

You should take your other meds 4 hours apart from your levothyroxine as they may interefere with absorption and could affect your blood levels which might be why you are getting variable results. You have got some TPO antibodies as they were slightly over range but I don't know the implications if you have no thyroid as I don't have antibodies. You could find out from others on here.

It would be good to get your vitamin D, B12, folate and ferritin tested as it's common for us to be deficient in all of these, in particular vitamin D.

[greygoose]

Does your doctor only test the TSH? Doesn't sound like he knows very much about thyroid. What is your TSH at the moment?

[Sasalden1 in reply to greygoose]

My Latest blood results are not back yet as they were just taken 3 days ago. But prior to that was 19 June TSH was 0.132 (L) 0.465-4.68 reference range and the other lab was called Thyroxin Free and was 1.65 reference range 0.78-2.19.

[greygoose in reply to Sasalden1]

OK, well, you are not hyper, it is impossible to be hyper without a thyroid gland. Your TSH is slightly under-range but that really is not a problem. Your FT4 (Thyroxine Free) is only just over mid-range, so you are not even over-medicated - you could probably do with an increase in dose. As I said, your doctor knows nothing about thyroid, so resist a decrease with all your might! It will make you ill.