Symptoms

Can Hashimoto’s antibodies over many years give you symptoms of hypo, when your bloods say your thyroid hormones are normal? Or is it all in my head? Surely the slow destruction of my thyroid must be real?! I’ve had enough.

[Buddy195 Administrator]

Hi Sobs, can you post your most recent thyroid blood tests? This would really help members advise you.

Did you follow the advice from last year re trialling gluten free and supplementing with selenium? Are you taking any other supplements?

What are your current symptoms?

Many of us have days where we think ‘ I’ve had enough’; that’s why this forum is invaluable. Members understand and can offer support. You’ve made a positive step in simply posting and asking for help. We are here to support each other 👍

[SlowDragon Administrator]

When were vitamin D, folate, ferritin and B12 last tested

As you have Hashimoto’s are you on absolutely strictly gluten free diet...if not recommend getting coeliac blood test done before trialing strictly gluten free diet

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common with Hashimoto’s

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Please add most recent results or come back with new post once you get results

[Lalatoot]

Sobs imagine a shoe shop. You go in and the assistant says what size are you? and you say normal size. So she brings out the whole range of normal sized shoes from a size 2 to a size 8 with all the sizes in-between.. She opens a box at random and puts a normal size 3 shoe on your foot and it hurts. So she takes another normal sized shoe a size 7 and puts it on and you walk funny because it is far too big and it affects your balance. In the end you try on all shoes in the normal sized range until you find comfortable ones that are great for you.That's how it is with thyroid hormones. The doctor looks at your results and says it's normal because it is in the normal sized range.. But like the shoes maybe that particular normal size is a bad fit for you and you need to try another normal in the range until you find the one that is the right one for you .

[Gingernut44 in reply to Lalatoot]

Great analogy 😊

[jgelliss in reply to Lalatoot]

Love the Analogy. It's the reality.

[Lalatoot in reply to jgelliss]

I didn't add more but you could then describe the ft3 as the width fitting. So now you are looking for a normal shoe (2 -8) with a normal width (A -G). No wonder combo therapy gets complicated to optimise .

[jgelliss in reply to Lalatoot]

You know I never thought in such analogy . But you worded it so well and it's the way it really is. For some low Free's work well . While some of us need higher doses to make us feel *Optimal *. We need what *We*need. And we must learn to trust our gut. It never serves us wrong.Thank you again for your analogy. It's Great.

[Miffie in reply to Lalatoot]

I must try that with my GP. Better than anything I have come up with! 🙂

[madge1979 in reply to Lalatoot]

Ha😂🤣... Brilliant , Thank you M x🌹

[Macey2009]

Hi i've had tpo antibodies >1000 for 3 years. My gp is now monitoring me every 6 months. As i'm at risk of developing autoimmune thyroid disease. I'm sure i've had thyroid symptoms for years. Often wondered if you develop symptoms as your thyroid is slowly attacked 🙄

[SlowDragon Administrator in reply to Macey2009]

Please write your own separate post including recent thyroid and vitamin results

Have you had Coeliac blood test done and trial strictly gluten free diet ?

What vitamin supplements are you currently taking

[Macey2009 in reply to SlowDragon]

Hi I will do. My next test is due in Aug. I will post results then.

[SlowDragon Administrator in reply to Macey2009]

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

[Macey2009 in reply to SlowDragon]

Hi i'm not diagnosed with a thyroid condition. My Dr is just monitoring me every 6 months due to the tpo antibodies >1000

[SlowDragon Administrator in reply to Macey2009]

Have you had FULL thyroid and vitamin testing

Also coeliac blood test

Once had coeliac blood test done, it’s ALWAYS Worth trying strictly gluten free diet

[Macey2009 in reply to SlowDragon]

Yes. All results i put on my profile. Tested negative for coeliac already.

[SlowDragon Administrator in reply to Macey2009]

So are you trialing strictly gluten free diet?

[Macey2009 in reply to SlowDragon]

Yes. I have been for 3 months so far.

[SlowDragon Administrator in reply to Macey2009]

Seen any improvements in symptoms

[Macey2009 in reply to SlowDragon]

Not so far.

[Hidden in reply to Macey2009]

I can’t seem to find the answer to that question. All I know is that I have tried everything as I’m sure you have. Symptoms can disappear for a while than show up again to remind you they are still alive and kicking!

[Hidden]

Thank you for your guidance all, I’ve had a bad couple of weeks feeling poorly, and it’s all come to a head. I haven’t had bloods done for a year so will arrange to get some done. I take selenium, vit d, vit b12 and tried gluten free, but couldn’t stick to it. I am perimenopausal and on hrt, just trying to get those hormones balanced is an nightmare. My symptoms are feel cold to the bone, dry brittle skin, debilitating daily exhaustion, weight gain, depression and throbbing aching legs back and hips.

[SlowDragon Administrator in reply to Hidden]

HRT frequently affects thyroid

Strongly recommend getting FULL thyroid and vitamin testing done

Always test as early as possible in morning before eating or drinking anything other than water

Come back with new post once you get results

[Hidden in reply to SlowDragon]

Will do, thank you 👍🏽

[Hidden]

I was more or less doing ok until the last couple of weeks, apart from some niggling peri menopause issues. Then the autoimmune-like symptoms just turned on again, after a few busy days.

[buddy99]

This research shows the interplay between hormone therapy and thyroid function. It takes some patience to get through it, though. researchgate.net/publicatio... This article by the British Thyroid Foundation is easier to digest. I quote:"Some women who experience severe menopausal symptoms due to oestrogen deficiency may be prescribed HRT. Women who have no pre-existing thyroid disorder and have normal thyroid function usually adapt well to the effects of the HRT and their thyroid function remains normal. However, women with pre-existing hypothyroidism treated with thyroxine, may require an increase in their thyroxine dose after starting HRT. Therefore it is useful for thyroid function tests to be re-checked after starting HRT." This is the link: btf-thyroid.org/thyroid-and... I hope this helps a bit.

[Hidden in reply to buddy99]

This is interesting, thanks buddy99. I really need to get my bloods tested!, after being on hrt for a year, see what is happening . I have high tpo antibodies (1000) which I was told was for Graves’ disease, as I was diagnosed as hyperthyroid, but 10 yrs later all my symptoms now point to Hashimoto’s hypothyroid, and have done for about 3 /4 years. I have never been prescribed thyroxine, only carbimazole, as my bloods are always (normal). Except for 1 blood test when my tsh was normal but my free t4 was low, but the gp just ignored it.

[buddy99 in reply to Hidden]

From what I have learned TPOab is usually more indicative of Hashimoto's whereas TRab is more associated with Graves. But TPOab can be present in Graves as well. It does not seem to be common, though. I wonder whether your TSH was measured during a "destructive phase" of Hashimoto's when the destroyed cells released their stored hormones and was therefore falsely interpreted as Graves. My money would be on Hashi rather than Graves. Just to confuse things more, apparently one can have both.

[Hidden in reply to buddy99]

I wondered that, but I never get answers from doctor’s as they are so dismissive of my symptoms and worries. Thank you for your knowledge and kindness buddy99 ☺️

[buddy99 in reply to Hidden]

We are all in the same boat here and need to look out for each other. I would wager that the great majority have experienced arrogance, dismissiveness, lack of empathy and kindness and a list of other sad behaviours as well as a deplorable lack of knowledge from doctors. It is an uphill battle every step of the way and it is good to have supporters when facing challenges. You'll find them here. This is an awesome bunch. I wish you all the very best. Stride forward with confidence.

[SlowDragon Administrator in reply to Hidden]

Sounds like Hashimoto’s.....not Graves

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Graves’ disease must be confirmed by high TSI or Trab antibodies

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[SlowDragon Administrator in reply to Hidden]

high TPO antibodies confirms Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[buddy99]

In addition the thyroid antibodies have a life of their own independent of TSH, T4 etc. They fuel the inflammatory process to which the body reacts mostly unfavourably. There is very little research on that, though. I'm only aware of research on TgAb affecting the quality of life (negatively) and increasing symptom load. My assumption is that TPOab have similar consequences but am not aware of any research. I selfishly only collect research that applies to me