Ok so next piece of the puzzle...I don’t have hashis!.....

[MiniMum97]

I was diagnosed hypo back in 2017 with hypothyroidism. Prior to this diagnosis my T4 was teetering around the bottom of the range for about 8 months of testing dropping below and sitting right at the bottom. Not really changing that much. My TSH gradually and consistently went up over that period until it went over range and I was diagnosed. I had symptoms for many months prior to going to GP at the start of that 8 month period and was really struggling by the time I was diagnosed.

I have had many many TPO and TG abs tests and s have been negative.

In 2018 after a number of months of hyper symptoms was diagnosed with Graves’ disease with a positive TSI ab test.

This went into remission and I am now hypo again on 100mcg of Levo.

I assumed the cause of my hypothyroidism was probably antibody negative hashis (as I have graves so another autoimmune disease is more likely so this seemed probable).

Have seen a private GP recently who thought I may have a thyroid nodule as she could feel something on exam and my TSH is very slow to respond to low T4 levels and more recently is jumping about with no changes in meds. I also often feel like I have a lump in my throat. So she recommended a thyroid scan.

Thyroid scan shows my thyroid is perfectly healthy! No nodules, no hashis, thyroid is a normal size, normal blood flow! This is great but what on earth could be going on. What is causing my hypothyroidism? And my weird TSH. Could there be a pituitary problem?

I also have PCOS.

Any thoughts from the wonderfully knowledgable people on this forum?....

My DH thinks I am a medical mystery.....

[asiatic]

Yours is obviously an unusual case and I would not presume to have any answers for you. I have just finished reading an article posted by someone on this forum that I thought you might find interesting.

dx.doi.org/10.1155/2012/182176

It says that TSBAb- hypothyroidism and TSAb - hyperthyroidism may be two aspects of one disease. I did find it quite difficult to understand.

Have you thought of posting your case history on the Elaine Moore forum. If anyone can help it would be this amazing lady.

[ Edited by admin to remove the fullstop at the end of the link - that stopped it working. ]

[MiniMum97 in reply to asiatic]

Hey thanks for your reply. That link sounds interesting but it’s not working. Please could you try to link to the article again? Thank you!

[asiatic in reply to MiniMum97]

dx.doi.org/10.1155/2012/182176.

[MiniMum97 in reply to asiatic]

Hi weird..this keeps taking me through to the same site where it says “This DOI cannot be found in the DOI System”. Do you have the name of the article. Maybe I can google it? Thanks again.

[asiatic in reply to MiniMum97]

researchgate.net/publicatio...

I am having problems too !

Try the above

[MiniMum97 in reply to asiatic]

Yes this is very interesting. Could possibly explain why I am fluctuating. I have never had my TRabs tested so maybe this is the next move....

[humanbean]

I got my first ever slightly positive antibody test last year. I've had several negative tests over many years - at least 10 years that I know of, but based on something my GP said once I suspect it was negative several years before that.

Be aware that 90% of hypothyroidism in the UK is believed to be autoimmune. The other 10% could be of a type which nobody ever bothers to track down. And some of us have to be in the awkward 10%.

[MiniMum97 in reply to humanbean]

Hi Thanks for your reply.

Yes I am aware there are other possible causes but it would be odd for my hypothyroidism to have a non autoimmune cause and then have Graves’ disease pop up a few months afterwards independently. You are quite correct in that it could be the case but seems more likely looking at the timeline and my history generally that they are linked.

The other thing I am researching is that my hypothyroidism is caused some sort of issue with my feedback loop and/or secondary hypo some of which fits but again seems less likely than asiatic’s suggestion above ie that it’s TRabs.

Thanks again for taking the time to reply.

[rosyG]

I was only diagnosed with Hashimotos on Thursday so very new to this but the consultant looking at the US said left side of thyroid very inflamed- but right side normal size but he looked carefully at it and said he thought it might have merely shrunk back to normal size- as will the right side after this phase is over. I did have antibodies too which made the call easier but I wonder if this going back to normal appearance is relevant for you?

[Hidden]

Could you post your actual test results, or as many as possible, with reference ranges?

That may help us to get some idea of what is happening. Apparently many people with Hashis have hyperthyroid symptoms at times because when dead thyroid cells disintegrate they dump their hormones into the blood.

I've also read that it's possible th have both Hashis and Graves at the same time so that symptoms swing from one to the other

[E_lizab8 in reply to Hidden]

Yes I had this for a while when first diagnosed endo said I had hot nodules but then my thyroid gradually calmed down and the nodules disappeared and I no longer get the hyper swings.

[SilverAvocado]

MiniMum97, it is possible you will never truly find out the cause. I believe there are several forum regulars who fit the general pattern for Hashimoto's but have never had a positive antibody test. It seems possible to have Hashimoto's but never get a positive test - there is quite a bit of variation in itself in the scale of antibodies members report, or of how impacted people are by Hashi's flares or symptoms caused by antibodies, or whether gluten or dairy are an issue, etc.

[JAGL]

Or by the massive exposure to plastics which appear to disrupt our metabolisms in general and our endocrine systems in particular ....