Do I definitely have hashi's?: I've been thinking... - Thyroid UK

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Do I definitely have hashi's?

Jules_Essex profile image
7 Replies

I've been thinking more and more about this but basically I was diagnosed as hypo at 21 (which I'm guessing is quite young?). I've been on 125mcg of levo for years and always just accepted what the doc said and never even questioned the cause of my hypothyroidism.

A couple of years ago I saw a rheumatologist who tested for thyroid antibodies and said it was 'negative'. I've seen an endo for the first time this year and he said that I definitely have hashi's as he said there would be no other reason to be hypothyroid at such a young age. He didn't test my thyroid antibodies as he said that if they came back negative he would still think that I have hashi's and that negative blood results don't mean that I haven't got it.

Basically my question is - is he right? Do I definitely have hashi's if my thyroid antibodies come back as negative? As a bit of added background I have other autoimmune issues - lichen planus and pernicious anemia :)

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Jules_Essex
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Clutter profile image
Clutter

Jules, 90% of hypothyroidism is caused by Hashi's so it's very likely you do despite the negative test a couple of years ago. Your other autoimmune diseases also make it more likely than not that you have Hashi's. If thyroid peroxidase antibodies were negative it is possible that thyroglobulin antibodies are positive for Hashi.

angelharley profile image
angelharley

I have Hashi's and 18mths ago tested positive TPO >500 and then tested again 6mths later and it came back negative, not sure whether it depends whether your in a flare or not?

How were you as a child, Jules? Full of beans or lacking energy? Did you get tired easily, get weepy easily?

I'm wondering cos I think there's a strong possibility that a number of kids are born with a degree of hypothyroidism. Babies are tested at birth these days but I'm willing to bet that only TSH IS tested and that if it's less than 10.0 no one's too worried.

Jules_Essex profile image
Jules_Essex

I've always needed lots of sleep - even as a child, I was also overweight as a child and have always gained weight easily. I was very unsporty and struggled lots with physical activity. I've often wondered if I could have been hypo as a child - would that means hashi's if it's from birth?

greygoose profile image
greygoose in reply to Jules_Essex

You sound just like me! That's how I was as a child. Slow, with breathing difficulties, too. Got called lazy, stupid, all sorts of things, but I'm sure it was the Hashi's!

One negative antibody test doesn't mean anything, because the number varies. You need several tests to be accurate. But it sounds as if your endo knows what he's talking about. Let's hope he goes on to treat you correctly, too!

Hugs, Grey

Angel22 profile image
Angel22

Hi Jules. I was also diagnosed Hypothyroidism-in my early 20's and never questioned it. Had a private blood test last week it came back with positive, off the chart results of Thyroglobulin antibodies and the report said Hashimoto's. This test was never done on the NHS so I'll never know if they may have been negative in the past and it developed over time, or if it was always Hashimoto's, or even if that is the correct diagnosis, no-one has ever looked at my pituatry, or adrenals, just chucked Thyroxine at me and said that'll do regardless of how you feel! Thyroid peroxidase antibodies were negative.

Did that doctor test both antibodies? It's possible to have one and not the other.

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