Does this sound odd?

Hi there, I've been given the official diagnosis by my GP today that I have hypothyroidism and he has now started me on levothyroxine - 25mcg a day in the morning.

He says that my case is quite unusual as to how the underactivity has all come about, and I'd like to know if anyone else has had something similar.

So the first ABNORMAL blood test that started the investigations off was back in November 2011, where my TSH was high - 5.2 with the previous clinic's range between 2.0 and 4.2. T4 was 16.48 but I can't remember the range for that I'm afraid. At this time the GP I was previously with did not start me on any treatment and simply told me not to worry about the result, i.e. adopt a 'do nothing' approach.

The months go on and another blood test came back NORMAL, despite me experiencing symptoms such as tiredness and muscle aches. I knew something was up. I changed doctors as I didn't feel able to ask for an antibody test as they might've thought, "what does she know?" kind of thing.

So I change clinics and the first blood test that was done specifically asked for antibodies to be tested. What do you know, they were raised at 84 KIU/L with the normal range 34 KIU/L or under. The doctor pointed out that SOMETHING was definitely going on and for me to come back if I felt any worse. She also said for me to undergo a retest in 6 months.

Things got weirder for me still - periods were consistently brown and black and were either early or late, never on time. Tiredness got worse and I took naps during the day. I consulted a GP in the middle of May and she suggested I have the retest much sooner than the agreed 6 months. I had the blood test done the following week, again to check for thyroid antibodies but also the TSH, T4 and a whole lot of other things that could contribute to tiredness, so I had LFT, glucose, plasma and iron tested.

The GP came back to me today and noted that the TSH was high and the T4 low. Ranges I don't have for which I apologise as this was all discussed on the phone and I could ask for the definite amounts at reception, thinking in hindsight. He tells me that although the thyroid is underactive, the brain is demanding more T3 and T4 than the thyroid is churning out. Not only that, but to go from a blood test done 3 months ago that came back with the TSH completely normal with the antibodies being high to all of a sudden a high TSH and low T4 is, well, in his words, unusual. I had an MRI done on my head/neck back in February last year to check for abnormalities in the pituitary so it can't be a pituitary problem, can it?

I always assumed I had Hashimoto's, but if the brain is demanding more T3 or T4 than my thyroid is producing does that mean it isn't autoimmune and is nothing to do with Hahsimoto's?

I've taken the news pretty well as I always knew something was wrong and I never felt that right, but if anyone could help me out with this I would be very, very grateful.

Thanks xx

4 Replies

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  • Hi Blossom, sorry you're going through this, and I don't want to disappoint you, but it doesn't sound all that unusual to me. Or am I missing something? If you have Hashimoto's and high anti-bodies, the TSH is bound to go up at some point. And it's perfectly reasonable for the T4 to be low if the TSH is high. If the T4 was high with a high TSH, that would be unusual! lol

    Not quite sure what your doctor meant by the 'brain' demanding more hormone, I presume he meant the pituitary, which is in the brain. TSH is a pituitary hormone that is increased in order to stimulate the thyroid to produce more thyroid hormone. All this is normal. And this happens whether the cause of the hypo is Hashi's or something else.

    I think either your doctor is a bit confused and hasn't had very much experience with hypothyroidism, or he was trying to explain it to you in a way you would understand (that failed! lol).

    This, whilst being a disagreable and debilitating disease if not treated right, is not a major catastrophy. It all depends on what your doctor intends to do about it. Has he started you on treatment?

    How much have you read on this site? There is some very useful information and the most important thing is that you know you're not alone. Hypothyroidism is very common and Hashi's is the most common form. If you have any questions, don't hesitate to ask them. There's always someone to reply.

    Hugs, Grey

  • Hi Grey thanks for your answer!! Yes he has started me on treatment with Levothyroxine. The starting dose for that is 25mcg per day, one tablet in the morning. The strange thing is this has gone on for over a year but to be finally told that I do have hypothyroidism is a comfort to me in one respect as I always knew I haven't felt that good. I haven't read a huge amount on this site in particular but I've googled Hashi's and hypothyroidism separately. Might be worth reading a few articles on this site for a better understanding on things.

    I agree with the doctor maybe trying to explain it to me in a way I would understand and that it didn't quite work. :)

    Thanks ever so much!! Hugs back to you :)

    xx

  • One thing I think all of us know (who've had this for some time) is that blood results being "normal" doesn't mean ANYTHING at all.. If you have the symptoms.. you have the issue... see this link..

    Good luck... and don't trust your results. trust yourself..

  • Hi Blossom

    I'm pleased that you have a diagnosis at last and treatment.

    25mcg is a starting dose, and quite low, although I did well on this dose for a year. I then needed an increase as my thyroid got worse and the symptoms returned... so it's important to track symptoms and go for repeat blood tests.

    You'll find lots of info here;

    thyroiduk.org.uk/tuk/about_...

    Welcome to the club and Good luck!

    Liza

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