Are any of you hypothyroid but don't have hashimotos?

Just curious if I'm in the minority.

My antibodies have been tested 3 times and negative. I'm on 75mg thyroxine for an underactive thyroid. Diagnosed last may when my tsh was 9.28 (0.2-4.2), ft4 around 15 (12-22) and ft3 5.3 (3.1-6.8).

Anyone else in my boat and not have hashis causing their thyroid condition?

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29 Replies

  • Jingyd35,

    You are in the minority because 90% of hypothyroidism is caused by Hashimoto's. You are in small proportion of people who have idiopathic hypothyroidism ie no known cause.

  • Thank you Clutter.

  • But it's safe to say I am hypothyroidism at the tsh and free figures I had on diagnosis? I've lost all faith in my gp.

  • Jingyd35,

    High TSH at diagnosis means you have primary hypothyroidism due to thyroid gland failure which is apparently not autoimmune although, as Justiina says, it is possible to have sero negative Hashimoto's which can be evident on a ultrasound scan or fine needle aspiration biopsy.

    Most GPs have little knowledge of thyroid dysfunction. That's no reason to lose faith in your GP.

  • Can I ask what secondary hypo is? I've seen the 2 types mentioned here.

    Thank you for explaining.

  • Jingyd35,

    Secondary hypothyroidism is caused by pituitary dysfunction causing TSH deficiency. At diagnosis TSH will be low-normal and FT4 will be low. The thyroid gland itself will usually be healthy.

  • What is Hashimoto's ?

  • Mollymoo56,

    Hashimoto's is an autoimmune thyroid disease which causes 90% of hypothyroidism.

  • Can't be 100% without FNA you don't have hashimoto. Some never have antibodies on blood, but FNA shows hashimoto.

    Not sure if it even matters. Have you had ultrasound ?

    Like I have simply perfect and healthy looking thyroid gland, no sign of hashimoto , but have had antibodies.

    In the end it is irrelevant, there is like Clutter said idiopathic hypothyroidism and that's it. I know your doctor tries to tell you it cannot be hypothyroidism as you don't have hashimoto.

    But if there are about 50 different genes affecting thyroid function then there are at least 50 different causes of hypothyroidism!

  • Thank you.

    No I haven't had a scan.

    What is FNA?

  • Fine needle aspiration it's called me thinks, sample from your thyroid gland.

  • Thank you.

  • Hi

    I have hypo. without having hashi's.

    I had antibodies checked by G.P. when first diagnosed hypo. and they said they were in range so I did not have hashi's.

    I had both types of antibodies checked at a later date with Blue Horizon and both were in range but both were very near top of the range and on another forum they told me they were too high to discount hashi's.

    I am now left wonder if I have it or not.

  • Ohhh I hope you get to find out.

  • Me! Primary hypo 25 years. On T3T4 combo. I actually asked my endo last week as I'd never been told.

  • Ahhh there is another person in my boat lol!! Not that I'd wish this on anyone 😄

  • I've been Hypo for 43 years, never told anything about why. I've had antibodies tested as part of private blood tests four times since 2000 and each time both types of antibodies have come back negative. My Hypothyroidism started not long after the birth of my second child.

  • Thank you Susie x

  • I'm hypothyroid without antibodies.

  • Thank you x

  • If you want to know various causes of hypothyroid symptoms and low thyroid function then this post from another forum is interesting :

    One of these days I intend to buy the book the post is quoting from. It looks as if it could be very interesting.

  • I am fairly sure I don't have Hashi's but since it was never tested when I might have had antibodies I can't be sure. I didn't have any of the wild fluctuations that go with Hashis, and I had taken a drug known to damage the thyroid gland some years previously.

    The rise of my TSH took ten years. They had done tests while I was taking the drug, and then followed up every so often when I complained of fatigue.

  • My doctor told me my thyroid was 'knackered' & I would be on thyroxine for the rest of my life. No other information although I know from the fact that my mother became paranoid & eventually had a heart attack when she had only pretended she was taking her thyroxine that I must keep taking it. It's so hard to get an appointment & always another urgent problem to deal with to have time to query things but I would like to know more about what's wrong with me. I have multiple other health problems, hearing a nurse listing them all at a preop hospital appointment my daughter in law asked if there was any part of me still working properly!

  • I'm hypothyroid, as I had RAI after having Graves disease, and so I guess I have only a bit of my thyroid left now. I assume this is called secondary hypothyroidism. I also have antibodies, but I assume that's left from when I had Graves..

    A few assumptions here... I'm not sure!

  • No - that's not having a thyroid ;-) ! Secondary is when your pituitary sulks and doesn't raise TSH even when your FT3 and Ft4 are rock bottom.

  • I was only told I was hypothyroid 8 weeks ago, plus Polymyalgia Rheumatica, original dose of 50mg increased to 75 after another blood test 2weeks ago.

    Not sure if shaky legs is due to Hypothyroidism, lethothyroxin, PMR or steroids to control PMR

    Also severe Vit D deficiency

  • I have never tested positive but diagnosed at time of menopause which is common when other hormones drop and I was told sometimes if you get a great dr....restoring deficiencies and hormones can resolve the low thyroid and then retest but I was put on thyroid meds right away and years later it is too late to go back...although looking at my labs .....who knows..... Women get it more often bec mainly under too much stress ,taking on too much ,and you burn out your adrenals which effect thyroid , vitamin and food deficiencies also burn out the thyroid since stress is really involved in all least this was some of the things I was told....sleep important , rest, not sweating the small stuff, exercise and nutrition......and vitamins...

  • I'm in the 10% and was advised years later by a scientist but not my husband to take kelp which helped a lot. I've recently been diagnosed with breast cancer and there is a suggestion that could be caused by lack of iodine so 'interesting'!

  • I'm in the same position as you but my TSH fluctuates in and out of range. I have other health problems like food intolerances and skin rashes.

    I am testing my TSH privately every week and I believe that my diet or sleeping habits are the reason for the fluctuation. I have food intolerances like lactose intolerance and possibly histamine intolerance. I've been trying histamine foods recently and have developed joint pains so it's possible my immune system is attacking my joints and thyroid gland.

    When I was dieting by eating one pizza a day and nothing else, my TSH was within range. It could be coincidence but I am still testing weekly so should have a better idea in a couple weeks' time.

    I'm not taking any thyroid medication unless I have Hashimoto's. My problem seems fixable once I find the cause.

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