Hashimoto’s

[Cornwall34]

I am new here.

I have Hashimoto’s and am in so much pain.

My joints and muscles hurt all the time, but I don’t know if it is due to the Hashis or something else.

Any advice would be welcome.

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Which brand?

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 as you already know you have Hashimoto’s

Ask GP to test vitamin levels if not been tested yet

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 .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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 ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

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

£29 (via NHS private service )

monitormyhealth.org.uk/thyr...

[SlowDragon Administrator]

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 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

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.

[Cornwall34 in reply to SlowDragon]

I haven’t had a blood test since last year. My GP says I only need one annually. I have had loads of tests over the years and was only found to be Vit D deficient.

[SlowDragon Administrator in reply to Cornwall34]

How much levothyroxine are you currently taking?

Do you always get same brand of levothyroxine?

What were your last test results

Bloods should be retested 6-8 weeks after EACH dose change (or brand change) until levels are stable after 2-3 consecutive tests

Important to get full thyroid and vitamin testing

Current treatment and understanding by GP’s on Hashimoto’s is often poor ....hence 109,000 members on here

See GP and request FULL Thyroid and vitamin testing

Make sure to get test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

[Rainbow0202 in reply to Cornwall34]

The symptoms of Vitamin D deficiency are muscle and bone pains. Make sure you get a proper prescription from your gp to sort it out. I had the same, was being treated for thyroid but then asked for vit d test it was super low. I was put on a really high dose treatment for 2 weeks, and then eventually reduced to a maintenance dose.

[Lalatoot]

I can identify with that. When I was very hypo I ached. Was so stiff. Could barely get up out of a chair. Through the night my legs ached. My shoulders ached.

You need to look at your blood results to see if you are on an adequate dose.

[Cornwall34 in reply to Lalatoot]

I haven’t had a blood test since last year. My GP says I only need one annually. I have had loads of tests over the years and was only found to be Vit D deficient.

[Lalatoot in reply to Cornwall34]

Many have been in a similar position and found that they need to take more control rather than letting the doctors take the initiative. That is why we know our blood results and keep records of them so we can look at thyroid hormone levels and match them with symptoms.

Some also resort to private blood tests if the doctors won't do them often enough.

Doctors generally have a poor understanding of thyroid so we have to learn for ourselves and become proactive to get the treatment we need.

[ffranny]

hello

i get awful pains in my joints but I found out, having had hashimotos for 20 years plus, that they went away if I took T3 as well as thyroxine, adjusting doses as per charts which can be found online. I found my own sourcr of T3 though it isnt cheap. i went from having to use a stick to go out walking the dog to being joint pain free, almost. I can only speak about my personal experience. Also I take vitamin D and K as a spray to avoid poor digestion issues described by others.

Hope this helps.

[Arlie123 in reply to ffranny]

Would you be able to pm me a link to the charts you’re talking about? Thankss

[ffranny in reply to Arlie123]

will have a look but google it, equivielent amount of t3 to T4

[JAmanda]

I have suffered from a lot of joint pain and muscle spasms etc for years. Getting my t3 and t4 levels helped quite a lot of symptoms but in the end I went to a Physio who released points in hip and thigh, gave me a few exercises, said get some spiky balls and sit on them Etc Etc and I'm a lot better. My point is that the low thyroid had almost certainly made my muscles weak but that had had a knock-on effect that a trip to a Physio really helped. Getting my thyroid and vitamin levels right didn't cure everything - so it is worth a look elsewhere.

[Cola4444]

I have been suffering from bad joint and tendon/muscle pain since one year ago.

Started with my shoulder, then one hip & lower back then the other hip and knee.

I have spent a fortune on scans and various orthopedics & chiropodists - most with differing opinions. A GP has most recently said it's likely Fibromyalgia which is a catchall diagnosis when they give up in my opinion & in my situation.

A rheumo & ortho have both dismissed Fibromyalgia.

The latest specialist suggests it's largely due to Hashimoto's and to get on the right dose and take from there. This is my latest plan.

I have read numerous people say they had Fibromyalgia & Arthritis type symptoms that have largely gone after getting on the right dose of Levo / T3.

Very important to go onto a Non Inflammatory diet of NO; gluten, dairy, soy & sugar.

This had definitely helped me two months in now. I hope the right dose works for us all suffering from this horrible joint / muscle pain - that can include inflammation headaches IMO.

Good luck !

[Jennyw59 in reply to Cola4444]

So which was it that changed you? Meds or diet?

[HashiFedUp]

I would say its quite likely yes. I had ten years of joint pain and finally got diagnosed with Hashimoto’s. Im on a cox-2 inhibitor called Celebrax which has changed my life. Don’t let them give you pregab or gambipen or anything opiate based. Try and get celebrax.

[ssMarilyn]

The pain comes from eating gluten. Anyone with hashi's should never eat gluten. Doing so is like adding fuel to a fire according to the experts. I can't do gluten without paying for it. I had some gluten yesterday and my belly swelled up like I was pregnant and my back ached so bad I was awake most of the night.