hashi/autoimmune query : hi Would would you... - Thyroid UK

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hashi/autoimmune query

Cup-cake7 profile image
13 Replies

hi

Would would you think I have Hashimoto because of only once having over range thyroid antibody.?

now I take HRT My TSH has gone to 0.5 whereas it was always at around five before I took it so I was given levothyroxine which made me feel a bit better without vertigo, but my TSH stayed high.

....I even wonder if I actually have hypothyroid? I'd be grateful for your thoughts on this and if I didn't take Levo what chance is there that I'd be okay without it, could thyroid take over? The interesting thing is it seems to be the sex hormones that caused the high TSH and now they are replaced.

Also through my life I have had psoriasis. Vitiligo I had pre-eclampsia and always had hayfever and dust allergy. I presume this is auto immune. Is it an endocrine who diagnoses it as I've told GP practice but it's still not mentioned on my notes as a condition

I would appreciate my record being accurate!

Can you advise on any of this please? Thank you.

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13 Replies
greygoose profile image
greygoose

Can't answer many of those questions without seeing some blood test results - preferable those from your diagnosis and the most recent - with the ranges.

But highly unlikely you were give levo without being hypo. A lot of people have to beg for it!

Sex hormones do not cause high TSH, low thyroid hormones cause it.

And even if you have only ever had over-range antibodies just once, you still have Hashi's. Antibodies fluctuate all the time but Hashi's never goes away.

Psoriasis and Vitiligo are autoimmune, but not the other things. :)

Cup-cake7 profile image
Cup-cake7 in reply to greygoose

Helpful Thankyou. ... I just wondered if pre eclampsia is an autoimmune as the baby waters disappeared into body like it's attacking itself maybe , I think it remains a bit of a mystery even now. Unless, I read to do with vit d deficiency 🤷‍♀️

Il look to see if can get old results. I went time & time again & begged for trial like you said. A Borderline thing on their ranges! I can't begin to understand - if antibodies are only out of range once I kind of see it as a tendency :) do most folk with Hashimoto have them in range all the time then when on Levo ?

re sex hormones, I mean when they reduce at menopause it seems to cause the thyroid hormones to go pear shaped in the mix🤔 or why do thyroid numbers fix when you replace ostregen & progesterone ? It seems all the hormones work together, it would be good to see thyroid numbers you had in those days but don't think they were measured the same to compare

greygoose profile image
greygoose in reply to Cup-cake7

I have never heard that pre-eclampsia is autoimmune. But who knows, they might one day find that it is. But I doubt it because pregnancy is not a permanent state, is it.

if antibodies are only out of range once I kind of see it as a tendency :) do most folk with Hashimoto have them in range all the time then when on Levo ?

As I said before, antibodies fluctuate all the time, so it's a matter of catching them when they're high. Just because they go back into range at the time that you test doesn't mean they're not high in between tests.

Most Hashi's people only ever have their antibodies tested once. I've only had them tested the once. So no-one knows if they're high all the time - with or without levo. It's a badly researched area - like most things thyroid.

All hormones do work together, but it's the thyroid hormones that lead the others - when T4 and T3 are out of kilter, most of your other hormones are too. And most people find that they need to increase their thyroid hormone replacement when they start HRT.

it would be good to see thyroid numbers you had in those days but don't think they were measured the same to compare

You mean the ranges are different? Probably. That's why we translate them into percentages, so that we can compare them.

Handy percentage calculator:

thyroid.dopiaza.org/

Sparklingsunshine profile image
Sparklingsunshine in reply to Cup-cake7

Having high antibodies only really means you might have a tendency to go hypo at some point, we have all sorts of antibodies floating around inside us, ironically some people with actual autoimmune conditions like Sjogrens or Rheumatoid Arthritis can have no antibodies, or are known as Sero negative.

Yet they clearly have all the hallmarks of the condition. This can lead to long delays in getting diagnosed and is very frustrating.

People with high thyroid antibodies obviously need to be aware of it but not everyone will become hypo. A lot of people never do. And I'm hypo but have never had raised antibodies, to add more confusion.

Cup-cake7 profile image
Cup-cake7 in reply to Sparklingsunshine

Thanks. Interesting, into the pot 😊. When I got the over range antibodies, I was just getting into the supplements and decided to cut out most of the gluten maybe just being a bit healthier kept me in range. I didn't do a test for a long time so I've done it Recently as the GP won't do it, and I'm in range.

I'm just a bit frustrated because I don't know if I ever needed levothyroxine truly.? Nobody wants to take tablets if they're not needed - my T4 was always a good number, but my TSH had gone to 5 and I had symptoms but since HRT TSH is 0.5, interestingly My T3 has remained at the bottom throughout so I don't convert well. I would love to know if I can try Leo to see if my thyroid picks up, or is there a test that can help me make decision eg should I have my thyroid scanned? All these questions. 😊

Cup-cake7 profile image
Cup-cake7

thanks again for explanations. Well I had high a/bodies once out of 4 tests so that's what put that thought in place. Plus I'd got into Levo and upped b12 & D which was touching deficient

Politely though its menopause when sex hormones keep decreasing that many seem to then move to hypo, would be u treating to note how it goes for males :)

Maybe women were undiagnosed hypo and just felt worse when meno hit!? That could be me actually as when young I look back and can see how I struggled at times & energy went out my boots. Maybe it's a factor with pre-eclampsia as it was at the end of the pregnancy I doubt my thyroid levels were monitored

Sparklingsunshine profile image
Sparklingsunshine in reply to Cup-cake7

I had severe pre eclampsia that led to a stillbirth in 1992, apparently there is a link between subclinical hypo and developing pre eclampsia but as you say its a mysterious condition and scientists are still trying to work out what causes it. I wasn't diagnosed with hypo until 2020.

There's another related condition, autoimmune, called APS, or Hughes syndrome. It causes the blood to become sticky and clot, causing pre eclampsia and left untreated can cause strokes, heart attacks etc. Quite often women with APS will also have thyroid problems.

Or another autoimmune condition like Sjogren's. Autoimmune conditions tend to hunt in packs and having one predisposes you to get another.

Cup-cake7 profile image
Cup-cake7 in reply to Sparklingsunshine

Gosh

I'm so sorry about your experience

it's a scary condition, for me, I honestly thought I was dying, the walls were jumping about As my blood pressure had gone through the roof, I fortunately came out of it relatively unscathed It's scary because you don't understand it and don't know if it will affect you next time. Just to give you low-dose aspirin doesn't seem to cut it to me!

have you tested for APS? Who would do that for you?

Cup-cake7 profile image
Cup-cake7 in reply to Sparklingsunshine

.... me too, I wasn't diagnosed hypo sub clinical until 2016. I had pre-eclampsia in 1983. I think I can see I had hypo symptoms when young there was no explanation. I remember a doctor saying you're getting old now I was 30😊🙃

Cup-cake7 profile image
Cup-cake7

'interesting to know how it goes for males' sorry about typo

Cup-cake7 profile image
Cup-cake7 in reply to Cup-cake7

...at end of day bro, no definite causes known root causes known about pre-eclampsia I just saw autoimmune on a list alongside other thoughts, there seems to be mention of blood vessels development, we only seem to offer low-dose aspirin which was offered to me basis on a survey basis when I became pregnant again....... although because I had decided to take the homeopathic route. I didn't qualify for the survey. Someone would say it was coincidence, but I went on to have two healthy pregnancies.. In fact, when my blood pressure started to go up near the end, I took homeopathic and my ankle swelling reduced reduce and got me to the due date which was quite amazing to see, I was just pleased I didn't have to go into hospital

Thanks again for your time

Sparklingsunshine profile image
Sparklingsunshine in reply to Cup-cake7

Yes I was offered low dose aspirin in my next pregnancy which was successful. I didnt take it in my third as I had no symptoms and the aspirin caused a haemorrhage after the birth, which isnt good. My third pregnancy was also successful. But I decided not to risk it again, its a dangerous complication.

Cup-cake7 profile image
Cup-cake7 in reply to Sparklingsunshine

Yes. What symptoms did you have in the second pregnancy?

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