Could I have developed Hashimoto's or a pituitary problem alongside primary hypothyroidism

Hi I'm new on here and hope someone more knowledgeable can help. I was diagnosed with hypothyroidism about 14 years ago and have been on the same dose (125mcg) for all that time. In the last 15 months I have been feeling increasingly ill and ended up diagnosed with Chronic Fatigue, Vit D deficiency and menopause around 12 months ago. The Vit D levels are now ok due to high dose (20,000iu) weekly at first then monthly and my B12 is good at 693. I've had the routine panel of bloods done in November as I had changed doctors and there were no problems with iron, ferritin etc. I was also tested around last February for autoimmune diseases including coeliac prior to getting the CFS diagnosis. When I recently had my TFT for my yearly check up the doctor decided to reduce my dose of levothyroxine. I am on HRT and know it can affect the binding of thyroid hormones but I think that would raise the TSH?

My results were:

TSH 0.02

FT4 16.8 (range 11 - 23)

FT3 4.2. (range 3.9 - 6.8). Previously my TSH has gone down to 0.01 but T4 was 24.7. These results don't seem to make sense as they are all at the low end and my doctor asked if I had been taking my medication but still insisted I reduce the dose to get my TSH up. I reduced to 100mcg about two weeks ago and am getting a lot of symptoms back (severe fatigue, numbness and tingling in my hands, really cold hands and feet, breathless even just walking upstairs and swollen ankles, also really irritable with no patience all pointing to underactive. The only reason I agreed to reduce the dose is because I was feeling excessively hot all the time especially if I was doing housework to the point I felt faint so thought maybe I was becoming overactive. I'm due to go back for bloods to be re-done on the 12th March and just wondered if anyone could shed any light on what might be happening so I can go armed with some info. I'm beginning to think the CFS diagnosis was wrong and that my thyroid might have been fluctuating over the last year. Does anyone know if it's possible to develop secondary hypothyroidism due to pituitary problem whilst being treated with thyroxine or possibly develop hashimoto's. I have had my antibodies tested previously and nothing showed up at the time. Thanks for reading and any help would be much appreciated.

4 Replies

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  • You could have developed Hashi's, or maybe you had it all along but the antibodies were low at the time they were tested. You haven't been taking iodine, have you?

    Your doctor is obviously one of those terrifed by a low TSH. He doesn't understand that TSH is meaningless once you are on thyroid hormone replacement, and that a low TSH under those circumstances does certainly not mean you are hypo - or even over-medictaed, come to that - you have to look at your frees to know that. And your frees certainly aren't saying you're over medicated. They are not even mid-range!

    Did you know that CFS (Chronic Fatigue SYNDROME) is actually a symptom of under-treated hypo? You cannot be diagnosed with a syndrome, it isn't logical. If you have what they call CFS then it is indicating that you are UNDER-medicated, not over-medicated.

    Change of doctor, perhaps?

    Hugs, Grey

  • Thanks Greygoose I was thinking the same thing re CFS it's just not logical. No I don't take iodine and apart from Vit D I stopped taking all my supplements a few months ago due to severe migraines happening twice a week sometimes. I remember getting migraines before being diagnosed originally and they cleared up after treatment so I do think I'm being under medicated. I'm planning to start the supplements again one at a time to see if they provoke a re-action but I didn't want to skew the tests. Think I'll go back to doctor earlier and ask for meds to be upped and if she won't agree ask to see an Endo. I've never seen one before as my results were fairly consistent and my previous Doctor seemed happy to leave me on the same dose even when the TSH was low. I only changed doctors because of moving to a new town.

  • Hi You really need to see a good endo, they are more likely to treat you with T3 ( via GP) if you need it. It does lower the TSH and some GP`s panic.Also when I was diagnosed many years ago, not sure about when you were, it was always just diagnosed as HYPO,Make sure you also have a diabetes test, As it is autoimmune too and it can cause some funny symptoms. Re vit D, dose is normally increased slowly after calcium re tests,it can make the calcium go too high which is dangerous.D takes 3 months to work at maximum. Migraines are also auto immune, if thyroid autoimmune you can develop all sorts of other autoimmune problems, I have about 12 at the last count.I hope that gives you some ideas.

    Best wishes,

    Jackie

  • Thanks Jackie I have been thinking of asking to try T3. I've had all the auto Immune tests ie lupus, coeliac etc, during the last 10 months to rule everything out and all came back normal. When they gave me the Vit D they did bone, calcium etc which was repeated after 3 months and then again in December and the test for diabetes was 4.5 so that seems fine. Might ask to have that one repeated as it was about 12 months ago. My doctor at the time I was diagnosed hypothyroid said it was mixoedema. I didn't know anything about thyroid at that time but I now realise it started straight after my son was born but it was put down to post natal depression. It was another eight years before I got diagnosed so it was pretty bad by then. They didn't do TPO antibodies then but last year I asked for them doing while I was being tested for everything else and was told they were normal.

    The only other blood result that was off was low lymphocytes but after ruling out auto immune the doctor said it wasn't significantly low. Might ask new doctor to check that as well but not sure how it would relate to thyroid? I've recently been reading up on thyroid and the more I read the more complex I realise it is. Doesn't help that one of the symptoms for the last year has been brain fog!!

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