HASHIMOTOS INFO: I would like to hear about... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

HASHIMOTOS INFO

Rainer1758 profile image
44 Replies

I would like to hear about Hashimotos disease

All my results for my thyroid have come back ok but my Dr seems to think my symptoms seem like Hashimotos. I saw his screen results & ,on about to see a specialist to try & find out whats going on with my body. I ache lm tired fatigued etc. Please any help would be good Thanks in advance

Written by
Rainer1758 profile image
Rainer1758
To view profiles and participate in discussions please or .
44 Replies
greygoose profile image
greygoose

I wonder what he means by that? As far as I know, there are no symptoms that are specifically Hashi's. The symptoms are usually due to low thyroid hormone due to the damage done by the autoimmune attacks. Or, maybe hyper-like symptoms due to a Hashi's 'hyper' swing. But, if he thinks you have Hashi's, why doesn't he just test for it? Test the TPO/Tg antibodies. He could give your thyroid an ultrasound too, to be ultra sure.

So, what were your results? Why don't you post them on here, with the ranges, and let's have a look. Maybe we can tell you what's going on with your body. :)

in reply to greygoose

There was a paper linked here that linked thyroglobulin antibodies to a symptom load. I'll see if I can find it when I'm back on my computer-too hard on my phone.

greygoose profile image
greygoose in reply to

OK :) But, it's very rare to find a doctor that knows anything about symptoms, so I'd love to know what he was thinking.

in reply to greygoose

Ah well, that's a whole different topic! But I'll dig out the paper anyway because it was interesting.

Rainer1758 profile image
Rainer1758 in reply to

Yes thank you very much

Rainer1758 profile image
Rainer1758 in reply to greygoose

Hi GG well l have many of the symptoms

I have an i/a thyroid and still have many issues. It's just the start of our investigation. I'm making an appt for a specialist as all my Thyroid results you suggested ie b13 have all come back ok. I will send you results asap thanks

Rainer1758 profile image
Rainer1758 in reply to greygoose

He put all my symptoms into his database and that's what it came up with. That's why hes sending me to see a specialist. Will keep you updated Thanks for your help

greygoose profile image
greygoose in reply to Rainer1758

Did the computer say specifically Hashi's? Or hypo/Hashi's?

Rainer1758 profile image
Rainer1758 in reply to greygoose

Hashis

Rainer1758 profile image
Rainer1758 in reply to

I've had the test for anti bodies and they are ok x

in reply to Rainer1758

Was it both of the Hashi antibodies or just the more common one?

Rainer1758 profile image
Rainer1758 in reply to

Just the normal

in reply to Rainer1758

For what it's worth, the paper I mentioned relates to the other one. I was interested because my TPO (the common test) was fine but my Tg (the other one) were high.

Marymary7 profile image
Marymary7 in reply to

Hidden and mine!? Makes you wonder why do they only test TPO antibodies when some have very high Thyroglobulin antibodies.?

Mickeydooley profile image
Mickeydooley in reply to

I’m in the same position. I have high tg antibodies but TPOAb within range. At a recent endo appointment the endo told me tg antibodies weren’t important and that you couldn’t make any judgements based on tg antibodies results. He told me he’d do a complete set of tests but he didn’t do tg antibodies test and he wrote to my gp to tell him I had primary hypothyroidism and no autoimmune disease or adrenal issues. This goes against everything I’ve been told by the lovely people on here and by my naturopathic doctor.

greygoose profile image
greygoose in reply to Rainer1758

Well, one negative antibody test is not definitive, of course. And, you can have Hashi's without ever having raised antibodies. But, I was curious about what he meant about the symptoms. Did he really mean Hashi's symptoms or hypo symptoms?

What's an i/a thyroid?

Rainer1758 profile image
Rainer1758 in reply to greygoose

That's was supposed to be underactive thyroid sorry mistake

greygoose profile image
greygoose in reply to Rainer1758

OK lol no problem. I thought it was something new! :D

Rainer1758 profile image
Rainer1758 in reply to greygoose

I just reeled off my many problems & the database came up with Hashimotos

greygoose profile image
greygoose in reply to Rainer1758

OK :)

in reply to greygoose

Do you think they really don't have antibodies, or that maybe they're like me and if only TPO is tested, well there's nothing to show?

Rainer1758 profile image
Rainer1758 in reply to

I've got 3pages of results l will put on here thanks for your help

in reply to

Argh, my brain isn't working. 'They' refers to people (in general, not anyone specific ) who have Hashis without getting antibodies...

greygoose profile image
greygoose in reply to

I think, with a statistic like that, which obviously comes from some research, both types of antibodies were tested.

greygoose profile image
greygoose in reply to

Who? I'm not sure what you're referring to, here.

I think everybody has some antibodies, that's why we have a range. And, if the antibodies are over-range, it's positive. If not, it's negative. Some people have antibodies very, very low in the range, but I doubt if anybody has zero.

Why they only test TPOab is like the question why do they only test TSH? Because they're very ignorant and know nothing about thyroid. They believe it's impossible to have high TgAB if TPOab is low. But, I'm the same. TPOab was just slightly over-range, TgAB in the thousands.

in reply to greygoose

All the responses got rather tangled!

It was in response to this "And, you can have Hashi's without ever having raised antibodies."

So the question is, do those people actually have no raised antibodies, or was only TPO measured and it was clear?

In my case, I do not have all of my test results, but of those that I do have, I don't think the TPO have ever been out of range. The Tg have been very high though. I did get a bit excited once to see a very low number (double digits?) but it turned out to be a really different lab range; they were still high. :( Ah well!

greygoose profile image
greygoose in reply to

Yes, I gathered what you were talking about after I'd replied. lol But, I think I did give the correct answer.

Mickeydooley profile image
Mickeydooley in reply to

Is this the paper you were referring to? Grey Goose posted it for me recently.

ncbi.nlm.nih.gov/pubmed/303...

Mickeydooley profile image
Mickeydooley in reply to Mickeydooley

Oops! It was SlowDragon who posted it for me.

in reply to Mickeydooley

Yes it was, thank you. I have had a symptom burden with what my doctor said at the time was perfectly treated hypo, but they weren't actually the symptoms listed in the paper.

Rainer1758 profile image
Rainer1758 in reply to greygoose

Thanks lm just in the first steps l have an under active thyroid with residual problems. Thanks

smwdorset profile image
smwdorset in reply to greygoose

My antibodies tested negative but when I had half my thyroid removed because of a suspicious module there was clear evidence of lymphocytic thyroiditis in the histology and the ultrasound showed degradation in the other half too. So my GP is convinced I have hashimotos even without the positive antibodies. And on this forum I have read that 20 per cent of people can have false negatives. My GP has asked if I can find the ‘ research authority’ for that so if anyone out there knows please do let me know.

Good luck with your further investigations . At least your Doctor seems prepared to think about this for you which not all do!

greygoose profile image
greygoose in reply to smwdorset

And on this forum I have read that 20 per cent of people can have false negatives.

Are you sure you read that on here? I've never read it. And I've never heard that antibody tests can give false negatives. And, I think that would be impossible to prove. Antibodies fluctuate all the time, so can be very different from test to test, but that doesn't mean that the negative one was false, just that the antibodies were low at that point.

And, yes, 1 in 6 people can have Hashi's without ever having high antibodies. They are diagnosed by ultrasound, because, as you say, the thyroid showed signs of lymphocytic thyroiditis. But, that still doesn't mean that their test results were false negatives.

smwdorset profile image
smwdorset in reply to greygoose

Sorry I dont quite understand what you are saying. By 'false negative' all I mean is that the antibody tests suggest one doesnt have hashimotos when in fact one does; so in that sense the test generates a false result. And it was on this website that someone posted that 20 per cent of people who have negative tests for antibodies in fact do have Hashimotos because this is my only source of information. I will try to find the post and repost it

greygoose profile image
greygoose in reply to smwdorset

What I'm saying is that a negative result is a negative result, not a false result in the sense that there was something wrong with the testing - which is what we normally mean when we use the term 'false'. It's not a false result at all. That is the number of antibodies you have in your system at the time of the blood draw, so it cannot be classes as false. What you can say is that a negative result is not conclusive, because it could just be that the antibodies are on a downward swing - they could go up again. I think we have to be very careful with terminology so as not to give people the wrong idea. And 'false negative' is not the right term in this situation.

I am not questioning the fact that many people have negative blood test results when they do in fact have Hashi's. But, it's not due to the blood test giving a false result. That happens all the time, I know. I always say that one negative antibody test does not prove that you don't have Hashi's, because they could be high in the next test.

A false result is like when someone is taking biotin, and it skews the TSH test, which comes back at 55, or something, when the Frees are near the top of the range. The TSH test does not correspond to the Frees. It is a false result due to the biotin. But, with antibodies, if the result is negative, it's because the antibodies are low in number at that time, not because the result is false. It's just not the same.

greygoose profile image
greygoose

Here's a good article about Hashi's and antibodies:

hashimotoshealing.com/under...

Rainer1758 profile image
Rainer1758 in reply to greygoose

Thank you GG you are extremely helpful person to know. Thanks for your time. My results cover 3 pages as.lve been tested for All you suggested is there an email l can send it to you as it would take up plenty if space

Marymary7 profile image
Marymary7 in reply to Rainer1758

You can edit and attach one picture to your post.

greygoose profile image
greygoose in reply to Rainer1758

I'm sure we don't need to know all that was tested - they do so many useless tests. What we need are:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

and we don't need all the extra words, just name-result-(range) - eg: TSH 5.6 (0.2-4.5)

That doesn't take up much room. And besides, you can take up as much room as you like. :)

Marymary7 profile image
Marymary7 in reply to greygoose

@greygoose, I thought this was a very interesting quote from the link that you gave us above. The excellent help on the site says take vitamin D and get it checked ....

"2 important anti-inflammatory agents are: Vitamin D and glutathione. These supplements strengthen the regulatory part of the immune system (TH-3 or the General).

(One important thing to note is that some people with Hashimoto’s have a defect with vitamin D receptors and may need to take more than is usually required by normal individuals.)"

I note that gps only give a measly size a day of 800mg or mcr ( not sure) suggestion usually.

greygoose profile image
greygoose in reply to Marymary7

Yes, that is interesting. I take vit D, but glutathione made me ill, so I couldn't take that.

Doctors are notorious for giving the wrong type of supplement, or far too little. But that's because they have no understanding of nutrients. They don't learn about them in med school.

SlowDragon profile image
SlowDragonAdministrator

Your first post - you were going to get copy of actual results and ranges

healthunlocked.com/thyroidu...

You are legally entitled to your blood test results

Important to see exactly what has been tested and equally important what hasn't been tested yet

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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

Ask GP to test vitamin levels if not been done and to retest thyroid levels

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. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Come back with new post once you get results and ranges

Members can advise on next steps

jimmyb profile image
jimmyb

I have hashimoto disease. I had the same problem as you. It got so bad I Ended up with chronic fatigue syndrome due to excessive fatigue. I also suffered from strange headaches and feelings. You have a fantastic doctor if they recognise this as potentially hashimoto’s. My doctor told me I had nothing wrong with me as all my thyroid tests came back close to normal. After years of being ill I eventually never gave up and went private and I’m now on a dosage of 125mg thyroxine and my life is pretty much normal and I no longer suffer from fatigue and CFS.

MissOphelia profile image
MissOphelia

I have hashimotos too and I’m really convinced that it causes symptoms besides the symptoms of the hypothyroidism itself.

When my thyroid is optimal numbers wise I still have terrible symptoms (I have high antibody levels). I’ve been reading a lot about high antibody levels in hashimotos myopathy being an indicator rather than thyroid function in itself.

My friends rheumatologist said to her when she was querying her fatigue in autoimmune disease, that if you think how tired you are when your body is attacking a virus, your body is attacking itself so the same applies! It really made sense to me. I’m sure people with better scientific knowledge could perhaps disagree but it really helps me with my chronic fatigue to think of it this way on a daily basis, it helps me be slightly less frightened of why I feel so poorly!

You may also like...

Hashimotos Info please

anyone could give me more information on Hashimoto's as it seems that's what i have (blood tests...

hashimotos info needed re: blood test

hi everyone I have all the symptoms of hashimotos (even my eyebrows are going bald) but blood work...

My update. Progress so far. Do I have Hashimotos? Any info be cool?

that my thyroid problem is caused by immune system Hashimotos or not? I dont know alot about how...

Hashimoto or not?

to me whether I have Hashimoto or not. I was diagnosed with nodules in my thyroid in 2000. I have...

Hashimotos

tell me if hashimotos causes anxiety. The dr said I have hashimotos and under active thyroid but...