Diagnosis Hashimotos Based On Antibodies Only - Thyroid UK

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Diagnosis Hashimotos Based On Antibodies Only

NowYouKnow profile image
31 Replies

Hi All,

Brand new here. Diagnosed with Hashimotos based on Thyroglobulin antibodies. Measurement was 4, reference range < or = 1

In addition, the doc tested for iodine, and it was found to be low.

Test shows everything else is normal.

Doctor started me on Liothyronine 5mg 2xday. I almost immediately had the anxiety, pounding heart, shaking hands. It was very uncomfortable. Doctor told me to discontinue and see what happens. I stopped two days ago, and am no longer having the symptoms I was having. But I don’t feel well, headache, nausea, etc. maybe unrelated.

My question is... is my result with the antibodies being high really enough to diagnose Hashimotos, or hypothyroidism. I’m second guessing this because of the side effects I had with Liothyronine (and a relatively small dose).

Other meds i take are lamotrigine, Wellbutrin, Lyrica. I have been diagnosed bipolar, and fibromyalgia. The thyroid doctor thought all of that could be due to hypothyroid. I was hoping that was the case too. I have almost all symptoms of hypothyroid but they are also the symptoms of the mental issues. I was hoping I found the core cause of massive fatigue and depression/anxiety. Mild mania can happen without lamotrigine.

I did show my results to a general doctor who made the normal statement that thyroid was fine and antibodies don’t really indicate a diagnosis. She also thought it was weird I was tested for iodine. She said she has never tested for that before.

Thoughts

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31 Replies
SlowDragon profile image
SlowDragonAdministrator

High TG antibodies can be due to other issues apart from Hashimoto's

healthline.com/health/antit...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results.

Add these results and ranges if you have them

Get doctor to test any not done

Getting vitamins optimal helps Thyroid hormones work better

Standard treatment is to start on Levothyroxine, not T3

Hashimoto's and bi-polar may be connected

drknews.com/when-hashimotos...

holtorfmed.com/mental-illne...

thyroidpharmacist.com/artic...

hypothyroidmom.com/miss-dia...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

NowYouKnow profile image
NowYouKnow in reply to SlowDragon

Thank you, I just posted reply with other results. All normal, including Vitamin D. He did not test folate, ferritin abd B12 . I had read something about bi-polar and Hashimoto's and honestly was hoping it was the case. Thank you for the links, I will read up on those.

SlowDragon profile image
SlowDragonAdministrator in reply to NowYouKnow

Can you add actual results and ranges on these vitamins. They may be within range but not optimal

Vitamin D at least around 80nmol (35ng/ml)

endmemo.com/medical/unitcon...

B12 at least over 500

Folate at least over half way in range

Ferritin at least half way in range

NowYouKnow profile image
NowYouKnow in reply to SlowDragon

Vitamin D 25-OH Total = 40. Ref range (30-100)

Vitamin D 25-OH D3 = 40

Vitamin D 25-OH D2 = <4

The others not tested.

SlowDragon profile image
SlowDragonAdministrator in reply to NowYouKnow

So you need folate, ferritin and B12 tested

Pernicious anemia (results in low B12) can cause high TG antibodies

NowYouKnow profile image
NowYouKnow in reply to SlowDragon

Also, Vit D same measurement and ref range was at 39 in 2017

ShonaGreen profile image
ShonaGreen

Hi,

I'm new here too and have found some very helpful information on this forum. I also just had tests to check thyroid antibodies and was only positive for TgAb (thyroglobulin) and not TPO. It seems that at the moment Hashimoto's is more likely when you test positive for both TgAb and TPO. However, if you can use the link below to access my post, the responses said that a positive result for just TgAb may also be Hashimoto's, there's a lot of good info with links to articles. I wish you well and hope that you feel better soon.

healthunlocked.com/thyroidu...

NowYouKnow profile image
NowYouKnow in reply to ShonaGreen

Thank you :)

SlowDragon profile image
SlowDragonAdministrator in reply to ShonaGreen

Some countries use TG antibodies to diagnose Hashimoto's

Unfortunately, at moment UK medics reluctant to diagnose on just TG antibodies

Other blood tests alongside are essential

TSH, FT3, FT4 plus vitamins

jimh111 profile image
jimh111

There's a lot of confusion about Hashimoto's and your doctor seems to have little understanding. Hashimoto's thyroiditis is when there is a swelling in the neck (goitre) caused by an autoimmune condition.

Most cases of primary hypothyroidism (failing thyoid gland) are due to autoimmune attack. Strictly speaking this is not Hashimoto's unless there is also a goitre although many patients and doctors refer to primary hypothyroidism as Hashimoto's.

Many people have elevated antibodies but most are not hypothyroid. People with elevated antibodies are at increased risk of developing primary hypothyroidism in the future.

The picture of your test results is very unusual, I wonder how reliable this assay is. In any event your antibody counts are not very important, they can give an indication of a possible cause of hypothyroidism and your future risk of hypothyroidism but they don't tell you if you are hypothyroid. For this you need TSH, fT3 and fT4 measured. Also, your doctor needs to pay attention to your signs and symptoms. A trial of thyroid hormone is fine but I wouldn't start someone on liothyronine, especially without TSH, fT3, fT4 results.

Your iodine is a little low, this is quite common but unlikely to produce any symptoms. A minor change in diet might help increase your iodine levels, low dose iodine supplements. Too much iodine can cause problems both hypo and hyper-thyrodism.

It this doctor suggested you could be hypothyroid and prescribed liothyronine without seeinig any TSH, fT3, fT4 results I would be wary of them. I'm a patient not a doctor.

DeeD123 profile image
DeeD123 in reply to jimh111

Are you saying that you only have hashies if you have a goitre.

helvella profile image
helvellaAdministratorThyroid UK in reply to DeeD123

In the original series of observations by Hakaru Hashimoto - every single one had a goitre.

Since then, it has been suggested that some people have only mild goitres which could pass unnoticed (by patient and doctor).

Alongside Hashimoto's we also see occasional references to Ord's thyroiditis - an atrophic form without goitre.

As the fundamental autoimmune issues are either the same or similar, the term Hashimoto's is widely used to cover both Hashimoto's (with goitre) and Ord's (without goitre).

Customary use of the term Hashimoto's varies - at least by country and probably within country.

jimh111 profile image
jimh111 in reply to DeeD123

Strictly speaking it is only Hashimoto's if there is inflamation, a goitre. However, the term is often usesd to describe primary hypothyroidism with elevated antibodies. It may not be strictly correct but we shouldn't get too hung up on the terminology. The important issue is what hormone levels you have.

SlowDragon profile image
SlowDragonAdministrator in reply to DeeD123

Technically yes, in UK medics would say only a goitre plus antibodies is Hashimoto's

Many of us have Ord's thyroiditis which is same as Hashimoto's, with high thyroid antibodies, but the thyroid becomes increasingly shrunk and atrophied

en.m.wikipedia.org/wiki/Ord...

Rest of the world calls BOTH Ord's and antibodies with goitre, as Hashimoto's

DeeD123 profile image
DeeD123 in reply to SlowDragon

Thank you. I was to say the least confused as I have both tpo and tgab antibodies but atrophied thyroid .🙏

SlowDragon profile image
SlowDragonAdministrator in reply to DeeD123

Ord's is Probably more common than goitre....but you rarely hear it called that

NowYouKnow profile image
NowYouKnow in reply to jimh111

Thank you. I did post with other levels measured on the blood test, all within normal range. I for sure have most symptoms of hypothyroid, but honestly they criss-cross with depression. I am cold all of the time, which I thought might be the differentiating symptom. I do not have a goiter at all.

Due to my reaction to the liothyronine, I wondered if, like you said, the elevated antibodies are not necessarily indicitave of hypothyroid.

Doctor did also give me i-thyroid 2xday, which contains both iodine and potassium. I cut down almost immediately to 1xday when anxiety, etc. started, thinking this could be the cause. I now have not taken it in about a week.

jimh111 profile image
jimh111 in reply to NowYouKnow

Your fT3 and fT4 are both a little low within their intervals, I would expect TSH to be higher in this case. Both fT3 and fT4 being below average can cause hypothyroidism, sometimes quite substantial but doctors tend to deny this. Based on your fT3, fT4 figures it was quite reasonable (and elightened) to start you on 2 x 5 mcg liothyronine but it didn't agree with you. I wonder if perhaps the doctor could start you on a low dose of levothyroxine 25 mcg increasing to 50 mcg. This would give you time to adapt to the tablets. I suspect you would eventually need some liothyronine. I assume the prescription was for 5 mcg not 5 mg.

If you are taking liothyronine or levothyroxine you shouldn't need any iodine supplements are you are marginally low and thyroid hormone contains iodine, the T3 and T4 referring to 3 and 4 iodine atoms.

I'd check that your existing medications do not have tiredness as a side effect.

NowYouKnow profile image
NowYouKnow in reply to jimh111

Hi, thank you. Yes dose was 5mcg. I did talk to my psychiatrist who thought the Wellbutrin could be exacerbating the anxiety. I had started that shortly before the liothyronine. He suggested stopping that to see if it helps.

I think, stopping both medications and then possibly re-introducing the liothyronine, at a lower dose might give me a better idea of root cause. Or, like you suggested, start levothyroxine.

I don’t think I’ll take the iodine and instead just get some dang salt. I looked, and all the salt I have is iodine free for whatever reason.

It is good to hear that my doctor did know what he was doing. He did ultimately want to work toward getting me off the Wellbutrin, since he obviously thinks the depression is thyroid related. My psychiatrist is hoping the same thing, as am I.

jimh111 profile image
jimh111 in reply to NowYouKnow

Adrenal hormone levels can be high in hypothyroidism due to slow clearance. Once you have been on thyroid for some time the clearance rate restores and then you are able to tolerate thyroid hormone. So, perhaps try levothyroxine for a little while then liothyronine. I suspect you will need some liothyronine.

SlowDragon profile image
SlowDragonAdministrator in reply to NowYouKnow

Vast majority of patients start on Levothyroxine (T4) not T3

This is much more easily tolerated.

Levothyroxine is a storage hormone and is converted in body to T3

Standard starter dose of Levothyroxine is 50mcg. Bloods should be retested 6-8 weeks after each dose increase

Aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range.

Majority of people can convert FT4 to FT3

Only adding very small dose of T3 if conversion is poor. You won't know if that's you , until stable with low TSH on Levothyroxine

Very few patients could cope with starting on T3. It's extremely potent and much more difficult to tolerate.

NowYouKnow profile image
NowYouKnow in reply to SlowDragon

Well it’s good to know I’m not alone in this. I’ll talk to the doctor and see where we go from here. Thank you so much.

greygoose profile image
greygoose

That's a very weird doctor you've got there!

First of all, I would have thought it was essential to test for thyroid hormones - T4 and T3 - before prescribing them.

Secondly, did he also check the TPO antibodies? Just having high Tg antibodies can be an indication of Hashi's - it was for me, but mine were in their thousands. Yours is only just above the upper limit, so could be due to other things, too. And, even if you do have slightly over-range antibodies and you do have Hashi's, it doesn't automatically mean you're hypo and in need of thyroid hormone replacement. You need your thyroid hormones tested to know that.

Thirdly, it's very unconventional to start someone on T3 only. It's rather a harsh approach to the problem. Normally, one is started on a low dose - 50 mcg, usually - of T4 (levo, a storage hormone) which slowly converts to the active hormone, T3. That way, the body gets used to it gradually. Starting someone on T3 is like throwing a non-swimmer in the deep end and telling them to get on with it.

And, lastly, even if there's some reason to start someone directly on T3 - although, I don't know of one - 10 mcg is a bit steep. 5 mcg would have been kinder on the body. So, not surprising, really, that you had a bad reaction.

As for the iodine, it's a bit low. But, without having the actual thyroid hormones tested, we can't tell what sort of effect that's having on you. But, if I were you, I wouldn't start any sort of iodine therapy with this doctor, because I'm not convinced he knows what he's doing. But, you could try eating iodine-rich foods, and see if it makes you feel better. :)

NowYouKnow profile image
NowYouKnow in reply to greygoose

He did test for the other thyroid levels, I posted those in an additional comment, all normal. I think he did the TPO, in screenshot, are those the thyroid peroxidase antibodies...listed below the thyroglobulin. Or is it something else?

I saw that most people were started on T4. The doctor said he did the T3 because my body was having trouble converting T4 to T3. I'm questioning his approach too, but he had a lot of positive feedback from patients.

Thank you for your reply.

greygoose profile image
greygoose in reply to NowYouKnow

Sorry, I didn't see a TPO result.

Just looked at your hormone results, and that FT3 result may be in the so-called 'normal' range, but it's not normal, it's too low. Your FT4 is also low. And I don't think your conversion is all that bad. Not bad enough to start you on T3 without trialling T4 first, anyway. And certainly not to start you on such a high dose of T3. I feel he's jumping the gun, a bit.

NowYouKnow profile image
NowYouKnow in reply to greygoose

Thanks for taking another look. The doctor told me to check back in after a few days without the liothyronine. Symptoms have decreased by about half so far. He may look at T4 next. Thank you for the response. I did not know the other measurements would be considered low.

TonyFl profile image
TonyFl

Hi, you are in the US same as me as this is a screen shot of your Quest results. I had Thyroglubulin Antibodies show up as a 2 (RED) following a panel requested by a rheumatologist as I was (and still am to some degree) getting joint pain and muscle twitching (btw my TPO was the same as you and <1). The Rheum said there's a possibility of Hashimotos and I should see an endocrinologist. Fast forward 2 months (now 2 weeks ago) and I'd had a full Thyroid panel and by Antibodies showed up as <1 and Green this time. The endo said you don't have a thyroid problem and potentially the first result was lab error - she also said and important for you to note that most Hashimoto's sufferers show up as 10 or higher on that scale (TgAB Antibodies). As others have posted my TSH etc. was all fine and that was what she used to determine if I had any issue. Did you have your Vit D tested, mine was low 25 (ref range 30-100)? It doesn't sound like you should have been prescribed anything as yet. What were your symptoms that led you to get tested?

P.S. I was not tested for iodine

NowYouKnow profile image
NowYouKnow in reply to TonyFl

Hi,

Thank you for your reply. Vitamin D was normal.

So interesting about the fluctuating antibodies. I do have symptoms of hypothyroid - depression, etc. I am cold all the time, which I thought was the differentiating symptom. But maybe not. I was honestly hoping to just find a reason why I am so tired and depressed. Its been a long long time in this state, and it makes for a difficult life.

TonyFl profile image
TonyFl in reply to NowYouKnow

I understand, it's difficult not having something to point to

NowYouKnow profile image
NowYouKnow

Thank you, everyone, for the replies. I apologize, I did not make it clear when I said "Test shows everything else is normal."

He did do a comprehensive metabolic panel, and everything was in range.

T3 Reverse = 16 (ref range 8-25)

T4, Free = 1.1 (ref range 0.8-1.8)

TSH = 1.57 (ref range .40-4.50)

T3, Free = 2.8 (ref range 2.3-4.2)

Vitamin D = 40 (ref range not established)

Thank you, and again, sorry I did not provide enough information.

NowYouKnow profile image
NowYouKnow

UPDATE: My psychiatrist suggested stopping the Wellbutrin which I did. I also stopped the Liothyronine. And today, I took the Liothyronine and am not having the side effects I had. So I think the Wellbutrin was the culprit. I feel very good today 😊

I really appreciate everyone’s help!

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