Opinions please : I’ve updated my profile with my... - Thyroid UK

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Opinions please

Katherine0121 profile image
8 Replies

I’ve updated my profile with my latest Thyroid Bloods, still awaiting vitamins/iron panel.

Currently under investigation for raised ALP. Scan of liver and organs has come back clear. Currently highly symptomatic with all the usual…fatigue, bone pain, confusion, swelling in neck etc etc.

Again a drastic change in my thyroid bloods. I have an appointment next week with NHS endocrinologist, different to the private endocrinologist whom I have seen twice before and who’s advice was “don’t blame everything on your thyroid”.

I shall prepare a list of questions etc. I was just wondering if this is maybe a case of been under medicated, or maybe a conversion/absorption issue that needs looking into. Thyroid has never been scanned as previous endo didn’t see the point “it will slowly be destroyed by the Hashimoto’s”.

Just interested to hear peoples thoughts or suggestions for things to ask.

As always, thank you 😊

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Katherine0121
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8 Replies
SlowDragon profile image
SlowDragonAdministrator

The most obvious thing …..apart from wildly varying TSH

is your ferritin result from a year ago

Ferritin 14ug/

What vitamin supplements are you currently taking

As vegetarian you are likely to need ongoing iron supplements and daily B12 and vitamin B complex

ABSOLUTELY ESSENTIAL to get all four vitamins tested and at optimal levels

Ferritin at least over 70 and nearer 100 better

Insist GP do full iron panel test for anaemia including ferritin

Vitamin D, folate and B12

Katherine0121 profile image
Katherine0121 in reply toSlowDragon

Thank you for your reply. I’m current taking Vitamin D supplements as listed in my bio. I requested a full iron panel and vitamins, currently awaiting these back from labs. I shall update once received.

SlowDragon profile image
SlowDragonAdministrator in reply toKatherine0121

As a vegetarian it’s important to supplement B12 daily

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 

chriskresser.com/folate-vs-...

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) 

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 methyl folate supplement and continue separate B12

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 B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

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...

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

If vegetarian or vegan, probably will need to carry on separate B12 supplements as well as vitamin B complex 

SlowDragon profile image
SlowDragonAdministrator in reply toKatherine0121

When was vitamin D last tested

Test twice year when supplementing

You may need higher dose, especially in winter

Ideally test Aug and Jan

Also important to be supplementing magnesium and vitamin K2 mk7

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

Gluten free diet is particularly low in Magnesium, but most Hashimoto’s patients benefit from magnesium supplement

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply toKatherine0121

With ferritin so severely deficient levels simply won’t work

It’s essential to maintain optimal vitamin levels for levothyroxine to work well

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

 

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member 

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements 

healthunlocked.com/thyroidu...

Excellent reply by Blearyeyed about iron in this post

healthunlocked.com/thyroidu...

Buddy195 profile image
Buddy195Administrator

From your profile:

08/11/2022

TSH 26 mu/l (0.35-4.7)

T3 4.3pmol/L (3.8-6.0)

T4 7.2pmol/L (7.8-21.0)

Thyroid Antibody >1000u/ml(0.00-75.00)

Currently taking Levo 150/175 alternative days.

Fultium-D3 800unit and Strivit-D3 3,200unit Daily.

Vegetarian and strict gluten free diet since July 2022.

Do you know which antibody tests were completed? How long have you been vegetarian?

Katherine0121 profile image
Katherine0121 in reply toBuddy195

Thank you for your reply.

I’ve been a vegetarian 32 years and they tested Serum thyroid peroxidase antibody.

Buddy195 profile image
Buddy195Administrator

As soon as you get your vitamin results do share them with us. It is essential for thyroid health to have optimal levels of ferritin, folate, B12 and Vit D. SlowDragon has given you great links and advice.

What is the highest dose of Levo you have been on per day? I would start with taking 175mcg daily, then increase this when this dose is tolerated. I can only increase by 12.5mcg (alternate days at first), as I’m very sensitive to change, although other members are fine adding 25mcg.

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