Need Help with understanding blood test. - Thyroid UK

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Need Help with understanding blood test.

PassionFruit-xxx profile image

Hello you wonderful people,

I’m just wondering if anyone can help me understand these results, I’m not sure if they are good or not so good, I asked my GP for further blood tests ie TPO antibodies, vit D3 as on previous blood tests these weren’t done, he was ok with that & said he would stick on a few more, as you can see most of them aren’t really any good for Hypothyroidism, I have no idea why he did these random tests, but when I went to see him it was because I wanted to raise Levo from 50mcg to 75mcg, I told him that I was very tired all the time, i felt bloated, I had aches mainly in the hip joints, I was shedding more hair than normal & was worried about weight gain.

He then said ohh maybe there’s more going on then, hence the rather random blood test, I don’t think he really knew what I was talking about, I also asked for him to test my ft3 but he rolled his eyes & said it wasn’t necessary 🤦‍♀️

I did get a Levo raise though & he won’t see me again until December now.

My vit B12 294 pmol/L 145.00-569.00pmol

TSH 2.6. mu/L. 0.27-420mu/L

Thank you for any help & advise.

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PassionFruit-xxx
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SlowDragon profile image
SlowDragonAdministrator

So high thyroid antibodies confirms cause of your hypothyroidism is autoimmune thyroid disease

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

Your B12 and vitamin D are too low

Are you currently taking any vitamin supplements?

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

Hi slowdragon

So how do you know if it is Hashimoto or not?

What i mean is, is that what I’ve actually got then? And I’ve been taking Vitamin D3 since covid times started, I’ve recently started taking vitamin B12 tablets for a couple of months now, so hopefully the levels will increase for my next blood test. I also started a vitamin B complex around the same time, I have ACV gummies in the morning & magnesium tablet at night.

Regenallotment profile image
RegenallotmentAmbassador in reply toPassionFruit-xxx

That top result TPO antibodies, that’s the one that is over range and indicates Hashimoto’s.

D would be better nearer 100, D3 with K2 is the best way to take it and supplement magnesium help absorption. I felt a whole lot better when I got my D up. Might need a loading dose (check vitamin D society) I took 4000iu for 6 months and am on 2000iu now.

🌱

PassionFruit-xxx profile image
PassionFruit-xxx in reply toRegenallotment

Hi regenallotment

So standard vitamin D3 is not good enough, what do you recommend, this is all new to me, my GP hasn’t even called me in to discuss hashimotto, I thought I just had hypothyroidism, I picked my results up from the receptionist & now I have to wait until December to have a check up.

Sparklingsunshine profile image
Sparklingsunshine in reply toPassionFruit-xxx

Most hypothyroid, but not all is caused by the immune system mistakenly attacking the thyroid. Its called Hashimoto's after the Japanese doctor who discovered it, or Hashi's for short. UK doctors usually call it autoimmune thyroid disorder. Around 90% of underactive thyroid is Hashimotos.

The usual advice is to get your key vitamins and minerals checked, Vitamin D, B12, folate and Iron. These can often be very low in patients with Hashis and often need continuous supplementation. Your Levo will work much better if your nutrients are optimal.

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSparklingsunshine

Thank you, so when I next go to Gp, I will ask for the vitamins, & ferritin ( that’s iron isn’t it? )the folate…which he told me was the best he’s seen & that I’ve knocked it out of the park, he said normally he sees it go the other way, but I’m still going to ask for that as well because I don’t think he has much of a clue really.

Regenallotment profile image
RegenallotmentAmbassador in reply toPassionFruit-xxx

The way it was explained to me (and I was too lazy/lacked capacity to do my own research) D3 with K2 ensures any calcium in your blood stream is deposited to the bones (as opposed to your arteries) I’d just switch to one that contains K2 when you next run out. Check how many iu your current D3 is. Like I said I took 4000iu per day for a good six months to get mine over 100. 🌱

PassionFruit-xxx profile image
PassionFruit-xxx in reply toRegenallotment

Ohhh I’m not waiting until I run out, I’ve just checked mine & they’re only 400iu, I’m going to get the ones with k2 & start at 4000iu to bring my levels up, thank you so much for sharing this because I had no idea that ‘ one size doesn’t fit all’ so to speak.

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

my GP hasn’t even called me in to discuss hashimotto, I thought I just had hypothyroidism, I picked my results up from the receptionist

90% of primary hypothyroidism is caused by autoimmune disease..

there’s almost 2 million people in U.K. on Levo. Roughy one in 10 females over 50 are on levothyroxine

Medics don’t acknowledge/consider the autoimmune aspect of the disease but you may find it very beneficial to change to gluten free and/or dairy free diet

poor gut function and bloating common, especially when under medicated as you currently are

Only change one thing at a time

So first step is to increase your dose to 75mcg

Unless very petite likely to need further increase in levothyroxine over coming months

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 as per NICE guidelines

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

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

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

ok, sorry for all the separate messages, I’m not very good at cutting & pasting.

I’m currently on 75mcg Levo ( 5 weeks into it) & I did feel so much better & happier but just recently I’m getting aches again in the hips & sometimes knees/shoulders, I’m more tired mid afternoon again.

I’m also not vegetarian or vegan.

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

I’m currently on 75mcg Levo ( 5 weeks into it) & I did feel so much better & happier but just recently I’m getting aches again in the hips & sometimes knees/shoulders, I’m more tired mid afternoon again.

This is typical…..symptoms start to return ……your body is getting ready for next increase in levothyroxine

Retest after 8 weeks on 75mcg

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

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

Also here

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

Ok, this makes sense, I will have to wait until December before the next increase because the gp won’t do a blood test until then.

But how many times will the medication have to be increased before you actually feel normal or are you never expected to ever be your old self again 😩

I weigh about 58kgs now ( 9st 3 ) so will the next increase be 100mcg Levo?

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

58mcg - suggests around 92mcg per day

So you might only need very SMALL increase

75mcg and 100mcg alternate days = 87.5mcg daily

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

started taking vitamin B12 tablets for a couple of months now, so hopefully the levels will increase for my next blood test. I also started a vitamin B complex around the same time,

what supplements exactly

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

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

Other options

healthunlocked.com/thyroidu....

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

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 B12 is over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

Ok, you lost me at ‘ what supplement ‘

I’m really clueless because I thought saying b12 was the supplement, it’s 100ug if that’s any good & just a run of the mill Sainsburys. But I’m guessing that it’s not good enough for my needs.

I told you I was clueless 😂

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

Yes…..get your self a good quality vitamin B12 and vitamin B complex

natureprovides.com/products...

Igennus - one per day likely sufficient

bodykind.com/supplements-c1...

Might be able to find cheaper

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

Thank you so much for all of this, I have screenshot these so I know what to look for, I may need further advice later as to when I need to take them ie: at the same time or once vit b12 is doing the job, then start the b complex, I don’t like to take up to much of your time.

I’m very grateful for everything I’ve learned today.

Thank you for your kindness & patience.

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

B vitamins in morning, after breakfast

Vitamin D mouth spray similar

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

So it’s ok to take b12 & b complex together or wait an hour or so between them?

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

You can take together

Once serum B12 level over 500 (or active B12 over 70) then reduce and slowly stop separate B12 and just continue with vitamin B complex

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

Thank you, I have made notes on all that you have said. 😊

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

And I’ve been taking Vitamin D3 since covid times started,

How much vitamin D

Obviously not high enough dose

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 when supplementing

NHS private testing here

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...

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

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

Ok the D3 is 400iu a day, but I’m going to get d3 & k2 4000iu as recommended by the helpful regenalotment.

I will ask the gp for advise & help..but I’m not holding out much hope on that.

SlowDragon profile image
SlowDragonAdministrator in reply toPassionFruit-xxx

Better You vitamin D with K2 is 1000iu per spray

medino.com/product/betteryo...

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSlowDragon

Oh ok, I will have a look at this, is the spray faster working than the pill would you say.

Sparklingsunshine profile image
Sparklingsunshine in reply toPassionFruit-xxx

GP's know even less about nutrients than they do about the thyroid. A low bar admittedly but it's true. You'd be better off asking my cat, and I don't have a cat 😆

PassionFruit-xxx profile image
PassionFruit-xxx in reply toSparklingsunshine

😂😂😂 now that really made me laugh, I am getting some very good advice from SlowDragon but I think I’d love a chat with your cat..that you don’t have…brilliant 😂

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