Hashimoto or not?

[Clara62]

It is still a mystery to me whether I have Hashimoto or not. I was diagnosed with nodules in my thyroid in 2000. I have checked the antibodies many times, at least 20 times since then and they were and are always negative. I've read that you can still have Hashimoto even if your antibodies are negative. What are the other signs of Hashimoto that differ from just hypothyroidism? I would really like to know my condition. It's important also for the kind of supplementation I need.

[greygoose]

Do your levels tend to jump around a bit? Do the Frees suddenly go very over-range without a change in dose? That's what happens when you have Hashi's. But, it depends at what stage you are with the disease. If your thyroid has already been destroyed, then the levels won't jump around, and you won't go 'hyper', you will stay steadily hypo.

If you suspect that you really do have Hashi's but antibodies are always negative, then the best thing to do is to get an ultrasound of your thyroid.

But, I don't understand what you mean when you say: It's important also for the kind of supplementation I need. What sort of supplementation do you think Hashi's needs, that other forms of hypo don't?

[Clara62 in reply to greygoose]

Hi greygoose, thank you for your reply.

My levels do not jump around without a change in dose.

I did many ultrasounds since I was diagnosed with multinodular goitre back in 2000. The nodules didn't change much since then.

I suspect what brought about this condition was a mix of mercury amalgamas and a very drastic, strict diet I did in my early 20's that caused a lot of problems, included a very big nervous breakdown.

What do you think the ultrasound should reveal if it's hashimoto?

Regarding the supplementation I recently read that Dr. Sarah Myhill recommend using a iodine supplement if you don't have hashi but 'only' hypothiroidism because it's very likely that you are deficient in iodine. Just thought it could help with improving my energy.

Also for people with hashi it is often adviced to go gluten free.

But mainly I just would like to know it. The various endocrinologists I saw in these past 20 years were never able to tell me for sure...

[greygoose in reply to Clara62]

An ultrasound would show up the damage done to the thyroid by Hashi's, and would be remarked on in the report. So, it sounds as if you don't have it. I have Hashi's - well, Ord's, really, because I never had an enlarged thyroid - and my ultrasound showed a very small, shrivelled thyroid.

I really, really would not recommend taking iodine unless you have been tested and found to be deficient. Excess iodine can cause all sorts of problems, including triggering Hashi's, but also cancer. And, ask yourself how it improves energy levels. It does it by stimulating the thyroid to produce more hormone. But, that can only last for a very short time, and then it could make you more hypo, because iodine is anti-thyroid. It used to be used to treat Grave's before anti-thyroid drugs were invented. Besides, stimulating a sick gland is not recommended, it just hastens its demise. Iodine deficiency is rather rare in the UK.

Hashi's people are advised to try gluten-free because they're more likely to have Coeliac Disease, or be gluten-sensitive. But, not all of them are.

[Clara62 in reply to greygoose]

Thank you, 🙏, very good to know more info about iodine. What you say make sense to me. I will certainly test my iodine levels.

Concerning gluten I don't think I have a particular sensitivity to it.

I am trying to improve my energy and sleep and I am looking at the various recommendations . I have a very annoying afternoon crash and a not enough sleep at night...

[greygoose in reply to Clara62]

You could be under-medicated. What are you taking for your hypo, and how much?

[Clara62 in reply to greygoose]

For the past year I have been on Levo only, between 75 and 100 mcg, now 88mcg.

Here are my latest results:

TSH 0.07 ( 0.27-4.2)

FT4 20.8 (12-22)

FT3 4.42 (3.1-6.8) I know this is low, especially compared to FT4 ....

B12 pml/L 181 (25-165)

Folate nml/L 533 (285-1474)

Vitamin D 78 ( 50-200), a few month before the result was 102, I am supplementing now and spending time in the sun when possible

Iron 8.8. ( 6.6-26)

TIBC 46 ( 41-77)

Transferritin saturation 19% ( 20-55)

Ferritin 55 (13-150)

Thyroid antibodies tested many times during the years, as I said, always negative.

Just yesterday I have added a tiny amount of T3. (1/8 of a compounded pill, 2.5 mcg)

[greygoose in reply to Clara62]

I would think that such a tiny dose is unlikely to help very much. One usually starts T3 with 5 mcg, and increases by 5 every two weeks until reaching 20 mcg, then holds for six weeks and retests.

But, before doing anything else, you need to raise your iron/ferritin. They are both very low. You should really see your doctor about that, because iron is tricky.

[Clara62 in reply to greygoose]

🙏 yes, I thought many times about iron /ferritin. I am always a bit concerned because there is a history of hemochromatosis in my family and I am scared to raise my iron/ferritin levels. What people do to raise levels without taking medication or proper iron supplement? I doubt that a doctor would give me anything, he would consider my levels perfectly ok...

[greygoose in reply to Clara62]

It's not raising your iron levels that causes hemochromatosis, that is something else entirely.

It appears that the best way to raise iron levels is to eat liver once a week. If you can do that. But, your iron is so low that your doctor should be investigating further to find out why.

[Clara62 in reply to greygoose]

Hi greygoose, thank you.

Iron it's tricky yes, I knew that if you have iron deficiency, your iron level will be low but your TIBC will be high, which is not my case. If you have too much iron, your iron level will be high but your TIBC will be low or normal.

My T.I.B.C 46 umol/L 41 - 77 - 18% through range indicates lack of capacity for additional iron..as far as I know. Doctors never said a word about my iron tests....maybe I should see a specialist,if only I would be able to find one

[greygoose in reply to Clara62]

The average doctor doesn't know enough about nutrients. For them, if it's in range, it's got to be good. I would think you need to see a haematologist.

[Clara62 in reply to greygoose]

Thank you for all your replies. Useful!

[greygoose in reply to Clara62]

You're welcome.

[Cooper27]

There are supposedly up to 16 types of antibodies associated with hashimotos, so you could potentially have some that they just don't test for.

Hashimotos would be apparent by having hormone levels that change around and by having symptoms that are typical of both hypo and hyperthyroidism at the same time.

[Clara62 in reply to Cooper27]

Thank you Cooper. Interesting. I wonder if there is the possibility to test all antibodies...

[Cooper27 in reply to Clara62]

I haven't heard of a test for all that's widely available. The antibody tests they run should pick up on 90-odd% of Hashimotos cases, there's just a small few who don't show up with the main 2 types, so it's not commercially viable to offer those tests to everyone.

As you say, your levels have remained pretty consistent over the years though, which I think is a sign you're regular hypo.

[Clara62 in reply to Cooper27]

Thank you 🙏😊