Hypothyroidism. Auto immune ?

[Tjohnson4]

I had a blood test back in July which said I was borderline for under active thryoid. Was meant to have another in October, due to positive covid test had to wait till now.

Doctors have told me that I have postiive thyroid antibodies. They are starting me on 50mg of Levothyroxine.
Naturally I jumped onto Google and it said I had Hashimoto disease.
So I rang back and asked her and she said I haven't got it. She said I have an auto immune disease and postiive antibodies.
How can this be as I'm confused ? It's saying on every website I click on that if you have positive antibodies then it is hashimoto disease. Yet she is saying it isn't. Im not one to believe Google over a doctor but EVERY website is saying this.

She also said I have an auto immune disease. Hypothyroidism in itself isnt a auto immune disease ?
Is there more than one. (It's not graves)
I'm confused but don't want to ring back for her to be annoyed.

It explains in this link that Hashimoto's is just the most common of the autoimmune thyroid diseases, so I assume you have one of the others, if that helps:

www.btf-thyroid.org/hypothyroidism-leaflet

So it is possible to have antibodies and it be auto immune but not be hashimoto? I read that page where it says the most common one is hashimoto. But nowhere can I find what auto immune disease it could be xx

Following with interest as I have exactly the same question and was told exactly the same as you

Did they say you have antibodies but not hashimoto aswell ? Terminology can be so hard. Xx

www.nhs.uk/conditions/underactive-thyroid-hypothyroidism/causes/

This is quite a useful link. The impression i get is that you either have Hashimoto and it caused the under active thyroid or you have an under active thyroid for another reason. Regardless of which one it is it is a type autoimmune disease/condition.

I have an under active thyroid and dont really understand the ins and outs. I just know i have it and have to take medication and keep an eye on my symptoms changing.

Thyroid UK are a good website for information and support

I don't have hypothyroidism myself, so I can't shed much light, but I think it's just referred to generally as autoimmune hypothyroid disease/disorders. I have vitiligo and came across it when reading about that as the two often occur together (linked below). Hopefully someone with it will come along and explain all .

uniteforvitiligo.com/guide/vitiligo-and-thyroid/

Ohhhh okay so it's more just a phase that's used to describe them xx

Okay so I'm still confused. Was looking at hyperthyroidism. I have got ever single symptom of that. More than I have hypothyroidism symptoms. Especially the diarrhoea, sensitive to heat , not sleeping, irritability and needing to move about, persistent thirst like omg I'm unbelievably thirsty, needing to pee more often.
She told me on the phone that hashimoto disease is when you flip from overactive thyroid to under active. The fact I have postiive antibodies aswell. I feel like this is whats happening to me. I don't know whether to wait the 8 weeks for check up or ring back up again?

The presence of antibodies is the indicator of Hashimotos, the hyperthyroidism is the symptom of that.

The antibodies attack the thyroid causing hyperthyroidism.

I have Hashimotos, was diagnosed after having my son, take 100mg of thyroxine a day. You should be having very regular blood tests to check this is the right amount of medication in the beginning as too much will make you hyper.

Unfortunately the disease is not always well understood by GPS as it's so complex in its causes and symptoms and they should refer you to an endocrinologist.

Isabella wentz has written some great books, and it can be managed quite well with diet.

Also have a look at a book called the root cause. This explains what's happening in your body really well.

I've just got my results. They didn't do me a T3 test. So I'm ringing her on Monday for an appointment. My antibodies are high. My TSH is just over. But my T4 result is below. Xx

I was under the impression that auto immune hypothyroidism was always Hashimoto's.

there are other causes of hypothyroidism though.

There's also Grave's Disease which is also autoimmune but with hyper symptoms.

This page about thyroiditis covers a little more

Hi op, I don't think they spend a lot of time clarifying it as the end result is usually clinical hypothyroidism.

I've been confused about the term for over 20 years; pre Internet I remember phases of intense sweating and then being diagnosed when basically wasting away (I lost weight, hypo) going on and off thyroxine as I went on and off the pill.

I was told I had antibodies; iirc anti thyroglobulin but can't be sure.

Either way my thyroid went kaput and I need thyroxine.

I think hashimotos is used to describe the active state of fluctuations that can happen while the thyroid is starting to be attacked by antibodies. Ive been confused in the last too as the antibodies listed for graves can be the same as hashimotos.

I also think the disease is given more "airtime" in America. So more stuff is written about it.

Even my Gp admitted they aren't great at all things thyroid.

I've found it easier to ignore the word hashimotos to be honest. It's more about maximising health and fitness while on thyroxine.

There's a type called Ords too; I wondered if I had that. Though at diagnosis my Gp said I had a small goitre.

Just double checked and wiki confused me even more. I think it's this:

some people seem to have ongoing active autoimmune thyroid issues where the thyroid is constantly battling back against the antibodies and so develops a goitre, without fully tipping into long term hypothyroidism. It's hard as symptoms swing back and forth.

I think it's those people who come under hashimotos. It can be caused by a lot of different antibodies.

Usually though the thyroid quickly becomes permanently damaged and so it's then classed as hypothyroidism as you need thyroxine for good. A bit like a diabetic needs insulin.

Most hypothyroidism is cased by
autoimmune disease. A few are due to cancer and the full or partial removal of thyroid. The thyroid can slowly grow to accommodate the partial thyroidectomy and so they usually don't give thyroxine, but would monitor especially if pregnant.

There are other causes of goitres too which can also affect symptoms etc.

The Gp says you don't have hashimotos as you now need thyroxine. It was triggered by an autoimmune issue. (It could be 'hashimotos' but it's irrelevant if that makes sense.)

You may also need more than that dose so do go back for regular tests especially if symptoms return. I'm on 4x150 and 3x 125 per week at the mo, peri menopause seems to fuck with it!

The btf is great. Definitely join.

This is ords:

en.wikipedia.org/wiki/Ord%27s_thyroiditis

Hi OP, I may not be answering your exact qu but I'll just waffle what I know and hope there's something here that helps...

I have Hashimoto's, diagnosed by antibody test a couple of years ago. I happened to be in the US at the time so had private care, and saw an endocrinologist who did a thyroid ultrasound (not common in the UK). She could see that the thyroid gland was full of holes like swiss cheese - that's a classic auto-immune sign as the gland has been attacked and partially destroyed by the antibodies.

Like you I wasn't aware that there could be another diagnosis from positive antibody test - I thought that the definition of Hashimoto's was when your thyroid is attacked by your own antibodies. Non-autoimmune hypothyroidism (if I understand correctly) is when the thyroid is failing to produce sufficient hormones for a non antibody reason, e.g. thyroid infected, removed etc. But since you've been told otherwise I'd just keep asking the question until you get an answer you can make sense of, or some additional information that helps you understand?

In terms of having hyperthyroid symptoms - in the past 2 years I've had blood tests that have shown me significantly off the charts hormone-wise, in both directions - ricocheting between hyper and hypo. Each time this has been explained to me (by endocrinologists) as being due to the damaged-by-Hashi's thyroid being very susceptible to viral infections, which throw it into disarray. (E.g. my 'normal' target range for TSH is 0.5-2.5 - it's been BOTH as high as 40 and as low as 0.003). So perhaps this can explain the disparity between your diagnosis and your symptoms - you might be in the middle of a viral flip-out?

I usually try to push for blood tests every 4-6 weeks when my levels are haywire, so that dosage can be adjusted more quickly than 8 weeks. With an understanding GP you should be able to wrangle that.

Have you had any more clarity on your situation in the past couple of weeks? Hope so. Wish you all the best getting back to normal.

Hypothyroidism isn't an autoimmune disease unless you have positive TPO and/or TG antibodies. It's quite possible to be hypo from lack of iodine and/or selenium in one's diet, in which case it's possible to reverse one's hypothyroidism. However most people will have autoantibodies and it's more difficult or impossible to resolve this condition. It also makes you far more likely to develop other autoimmune diseases.

Hashimoto's is supposed to be autoimmune thyroidism with an enlarged thyroid gland. If you don't have the latter then it's Ord's disease, however these days you'll find most forums only talk about Hashi's whether your thyroid is swollen or not. The main point is, you have autoimmunity.

You may get hyperthyroid symptoms, if you have 'Hashi flares' or release of bursts of thyroid hormone as parts of your thyroid are destroyed by the antibodies, or if you have nodules that release thyroid hormone. This doesn't mean you actually are hyperthyroid, it's a temporary phase that's part of autoimmune thyroid disease.