Update regarding bloods: Spoke to GP on Monday... - Thyroid UK

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Update regarding bloods

Clydeiknowyou69 profile image
16 Replies

Spoke to GP on Monday, have been prescribed levothyroxcine, 25mg, might not be mg. I know from this forum this can be too low a dosage, do I just take them and take things from there. Thank you wonderful people for any advice again.

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Clydeiknowyou69 profile image
Clydeiknowyou69
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16 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Noone ever starts on their optimal dose. We all work up from a starter dose which could be 25 or 50mcgs. rarely people are started at a higher dose but sometimes it's not tolerated well starting at a higher dose.

So your prescriber is being conservative starting you at 25mcgs but thats fine, will just mean another step in getting to where you need to be dose wise.

Take the levo 1hr away from food and coffee, preferably on an empty stomach. Some find taking last thing at night works well for this.

Have you had levels of ferritin, folate B12 and D3 checked? Hypo people have low stomach acid which causes vitamin deficiencies.

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toJaydee1507

Thank you for your reply. My bloods that were done in March this year. Ferritin 40 (13-250) Vitamin B12 343 (197-771) I have folate defiency, had to flag that to the docs, gave me folic acid, can't take it upsetting my stomach, GP said to stop taking it. D3 not checked. Bloods will be done once on levothyroxcine, my folate levels will be checked again then. Will request D3 is tested as well.

Jaydee1507 profile image
Jaydee1507Administrator in reply toClydeiknowyou69

Doctors give out 5mg folic acid which is a high dose. You would be better off starting out with a B complex containing methylfolate at a lower dose and then adding to it as needed. Thorne Basic B is a good one, shop around for best price. Your B12 is on the low side.

If you have low vitamins that will be contributing to you feeling bad + your thyroid hormone won't be able to work properly. So its very important to start getting on top of low vitamin levels.

For ferritin start eating chicken livers a few times a week or chicken liver pate.

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

B12 and ferritin are both far too low

Are you vegetarian or vegan?

NHS only tests and treats vitamin deficiencies

On levothyroxine we need OPTIMAL vitamin levels

Down to us to self supplement to maintain good vitamin levels

Vitamin D at least over 80nmol and between 100-125nmol may be better

Serum B12 at least over 500

Active B12 at least over 70

Folate and ferritin at least half way through range

suggest you get vitamin D tested now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Low vitamin D is extremely common when hypothyroid, especially if you have autoimmune thyroid disease, also called Hashimoto’s, diagnosed by high thyroid antibodies

Have you had thyroid antibodies tested yet

If not request these are tested at next test

Ferritin is storage form of iron, working on improving low ferritin levels by increasing iron rich foods in your 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 

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.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

restartmed.com/hypothyroidi...

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

healthunlocked.com/thyroidu...

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...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toSlowDragon

Not vegan or vegetarian. Yes I have positive TPO antibodies *96.1 (<6.0)

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

Do you have any Low B12 symptoms 

If you do ideally get GP to test for Pernicious Anaemia before starting on B12 supplement

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...

Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.

have folate defiency, had to flag that to the docs, gave me folic acid, can't take it upsetting my stomach,

Rather than just taking folic acid ….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) 

Thorne is currently either unavailable or expensive. Normally around £20

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

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 until B12 is over 500

Clydeiknowyou69 profile image
Clydeiknowyou69

I have ordered B12, will order a B complex as well. Can I take these together. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

yes but take just B12 for first week

SlowDragon profile image
SlowDragonAdministrator

GP should also have organised coeliac blood test now

Has that been done yet?

healthunlocked.com/thyroidu...

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toSlowDragon

No, no coeliac blood test mentioned.

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

I gave you link to NICE guidelines in that previous post

GP should test all autoimmune thyroid patients for coeliac disease

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

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

Typical symptoms - IBS, bloating, acid reflux, slow gut motility etc etc

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 test positive for coeliac, but a further 80% find 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 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.

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toSlowDragon

Will ask for coeliac test as well. Getting to even speak to a GP is a nightmare, had to wait weeks just to have a telephone consultation about the thyroid issue.

TaraJR profile image
TaraJR

Since 2019 NICE have recommended dosing levothyroxine by bodyweight, rather than starting on an extremely low dose and increasing to the best dose over many months. Though many drs don't seem to have caught up on that. 25mcg is the tiniest dose, not enough for anyone really.

"1.3.6. Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

1.3.7. Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease."

nice.org.uk/guidance/ng145/...

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toTaraJR

Thank you for your reply, yeah I've put weight on recently, probs to do with thyroid so could probably do with a higher dose. Will give the levo a try and hopefully will get higher dose later if my bloods show I need more.

TaraJR profile image
TaraJR in reply toClydeiknowyou69

Always get copies of your test results, with their reference ranges. You're legally entitled to them and they are free. Or download them if you have online access. And post them here for the best advice.

If you're say around 10 stone, that would be 63.5kg. Multiply that by 1.6 (as NICE recommends) and that's a starter dose of 101 !! So you see where 25mcgs is a tiny dose!

Clydeiknowyou69 profile image
Clydeiknowyou69

Yeah, have been getting all my test results lately. Weight is more than ten stone unfortunately so looks like probably on too small a dose. Had to fight to even get medicated so will go with it for now. Thanks again for your reply.

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