Pernicious Anaemia, Hashimoto's, Connective Tissue disorder, Migraine

[skylark25]

Hi,

I was recently diagnosed with this condition. I also have Hashimoto's thyroiditis (diagnosed in my thirties). Any advice on supplementing B12 injections would be much appreciated.

[SeasideSusie Remembering]

Skylark25

You might be better posting on the Pernicious Anaemia forum here on HealthUnlocked about B12 injections, their forum is dedicated to B12. Many (maybe most?) of their members have B12 injections, some self source.

healthunlocked.com/pasoc

[skylark25 in reply to SeasideSusie]

Many thanksfor prompt reply, Seaside Susie. I'm probably being dense, but how do I access that forum?

[skylark25 in reply to skylark25]

Apologies. Scrub that. I see the forum is headed PAS, but hosted on Health Unlocked.

[SlowDragon Administrator]

Is your levothyroxine dose fine tuned and vitamin D, folate, ferritin levels optimal too

Are you currently taking daily vitamin B complex or any other vitamin supplements

As you have Hashimoto’s are you on gluten free or dairy free diet

[skylark25 in reply to SlowDragon]

Not sure re 'fine-tuned', or how I would go about assessing this. My dose was reduced from 100 to 75mcgs a couple of years ago. Take vitamin D, Folate and ferritin not checked. Not on gluten/dairy free diet, Links to articles on this latter aspect would be appreciated.

[SlowDragon Administrator in reply to skylark25]

So it’s absolutely essential to get FULL thyroid and vitamin testing done at least annually

You will see thousands of U.K. patients are forced to test privately to make progress

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Many people find different brands levothyroxine are not interchangeable

Which brand of levothyroxine are you taking

Do you always get same brand

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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 all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and 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 ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

ideally test vitamin D twice year…..August and January

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

[SlowDragon Administrator]

Connective tissue disorder……do you mean Elhers Danlos syndrome?

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. 

 A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may 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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

[skylark25]

Many thanks for your detailed and interesting response, SlowDragon. I intend to read around the subjects you raise.

In answer to your question, I received a diagnosis of Undiffentiated Connective Tissue Disorder (Lupus Unit at St Thomas's) in 2006. Happily, aside from occasional flareup, my symptoms have been relatively mild. The consultant also diagnosed Hashimoto's. Prior to that I had been unaware my underactive thyroid was an autoimmune condition.