Need advice on what to do next!: Recently... - Thyroid UK

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Need advice on what to do next!

ErnieBear profile image
5 Replies

Recently diagnosed with Hashimotos following endocrinologist appt, which was actually to investigate causes for my hair loss (lost 60% of hair after covid vaccination, then Covid itself in early 2022). Also been suffering other symptoms for around 2 years - weight gain, tired all the time, joint pains, palpitations, trouble sleeping.

The endocrinologist asked for other tests to be run with results below. This has led to the GP saying to monitor the results every 6 months...in the meantime, I still feel permanently exhausted, still gaining weight (21 lbs in last 18 months despite walking everyday, playing golf 2-3 times a week and being pretty careful what I eat and drink). My hair loss has slowed, but shows no sign of regrowth (several large bald patches and thinned all over). It makes me feel really down.

Asking advice from this group for my next appt at GP, what can I do or ask for to help me feel more like my old self as my results currently are all "normal" apart from TPO abs.

Nov 2023 Results:

thyroid peroxidase abs 95.6 (range 0-34)

TSH 2.7 (0.27-4.2)

Serum free t3 5.4 (3.1-6.8)

Serum free t4 15.7 (10.5-22.0)

Serum ferritin 113 (no range)

Vit D 94 (50-140)

Serum iron 26.4 (5.83-34.5)

total cholesterol 6.8 HDL 4.2 LDL 2.6

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ErnieBear
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SlowDragon profile image
SlowDragonAdministrator

No B12 or folate results

Have you had coeliac blood test as per NICE guidelines

nice.org.uk/guidance/ng20/c...

Hashimoto's 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

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Last thyroid test

Were thyroid tests done early morning, ideally before 9am, only drinking water between waking and test

This gets highest TSH…..all most medics consider

With high thyroid antibodies and symptoms your endocrinologist could start you on levothyroxine, but they probably want to wait until TSH is over 5

FT4: 15.7 pmol/l (Range 10.5 - 22)

Ft4 only 45.22% through range

FT3: 5.4 pmol/l (Range 3.1 - 6.8)

Ft3 better at 62.16% through range

ErnieBear profile image
ErnieBear in reply toSlowDragon

Thank you for the advice - very helpful - Lots of reading to do now!

I am due to see a nutritionist in a couple of weeks' time, so will try to get a celiac test done before then.

It's just so frustrating because I know I dont feel right physically, and with the hair loss and weight gain have also lost so much self-confidence too.

ErnieBear profile image
ErnieBear in reply toSlowDragon

Forgot to add other results (from a year ago though)

Folate 7.0 (no range given)

B12 223 (197-771)

SlowDragon profile image
SlowDragonAdministrator in reply toErnieBear

Both far too low

Ideally retest before starting supplements

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

ErnieBear profile image
ErnieBear in reply toSlowDragon

More great information…thank you so much!

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