Advice/thoughts on blood test results please. - Thyroid UK

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Advice/thoughts on blood test results please.

Juddie profile image
12 Replies

Thyroid Peroxidase Antibodies is 397.

Hello,

I havent posted on here for a long time but have been feeling rough for quite a while, so here I am again. I have been taking 75mcg Levothyroxine for about 2 years and it wasnt easy getting my gp to even increase it to that. I have recently had a private advanced thyroid test, the results are back and they recommend I see my GP. They were fasting tests and done at 7am. I would be grateful for your thoughts and advice on my results, so I can get my case together in readiness for GP appointment.

Thanks in advance.

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Juddie profile image
Juddie
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Forestgarden profile image
Forestgarden

Hi there, its no wonder you're feeling awful. Your vitamins and your thyroid hormones are woefully low. I'm sure someone will be along detailing the vitamins you need. Pernicious anaemia was mentioned when my B12 was low, so you might want to get the GP to test for this, along with iron, plus the other ones you've already had tested. As for the thyroid hormones, they are rock bottom. Go with a list of all your symptoms and ask for an increase in levothyroxine. Be firm, don't take no for an answer.

Star13 profile image
Star13 in reply to Forestgarden

I concur with what forest garden has said but you need to get your vitamins up before your Thyroid meds will feel the benefit of any increase even if you get one. Your Vit D needs a loading dose it’s so low for a start. Your Folate is also deficient so you need to be supplementing with folate too.

I’m not sufficiently up on B12 except yours needs boosting so others will say what you need to do there. I’d say injections but how regular I’m not sure. If I were in your shoes I’d start there before doing the thyroid but I might be shot down in flames for saying that!

tattybogle profile image
tattybogle

these may come in useful :

this one has lots of references to show GP ~ all recommend they keep TSH below 2/ 2.5 ish in all patients on levo ... so use these to get a dose increase if they say 'you don't need one because your TSH is in range' healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

This one is a simple explanation of why TSH 'in range' is not the same as 'optimal for the individual' healthunlocked.com/thyroidu... the-shoe-size-analogy.-

SlowDragon profile image
SlowDragonAdministrator

Take these results to your GP and politely insist on

A) 25mcg dose increase in levothyroxine to 100mcg

Which brand of levothyroxine are you currently taking

B) GP obligated to prescribe 1600iu vitamin D daily for 6 months

C) GP also obligated to prescribe Folic acid for folate deficiency

Low vitamin levels are a direct result of being on inadequate dose of levothyroxine

Are your TPO antibodies negative?

Juddie profile image
Juddie in reply to SlowDragon

Slowdragon...The last few boxes of levothyroxine tablets have been Teva...and Thyroid Peroxidase Antibodies is 397.

SlowDragon profile image
SlowDragonAdministrator in reply to Juddie

So high TPO antibodies confirms autoimmune thyroid disease

Presumably you knew this?

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

With Hashimoto’s we frequently need to keep dose Levo high enough to ensure TSH is not higher than 1

are you on gluten free diet?

If not your GP should be doing coeliac blood test, as per NICE guidelines

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

Or buy a test online, about £20

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) 

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

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...

SlowDragon profile image
SlowDragonAdministrator in reply to Juddie

Teva upsets many

Teva is only brand that makes 75mcg

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply to Juddie

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

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

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.

Some people need a bit less than guidelines, some a bit more

SlowDragon profile image
SlowDragonAdministrator

vitamin D

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

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 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

Can test via NHS private testing service

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

suggest you try 3000iu daily and retest in 2-3 months

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...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting 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

B12 is also too low

Low B12 symptoms

b12deficiency.info/signs-an...

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

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add folic acid prescribed by GP

Once the folic acid prescription is finished

Look at taking a daily vitamin B complex

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...

B vitamins best taken after breakfast

Igennus B complex popular option. 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...

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

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

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

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

Juddie profile image
Juddie

Thanks for all the good advice

Update:

Had appt with GP-

Levo upped to 100mcg for now (according brand).

Told me to take multivitamin for d3 and folate issues. Wouldnt perscribe anything :-/

So, I Have bought my own folic acid and some BetterYou 3000 vitamin d spray.

I have had hypertension for about 8 years, normally well controlled, but that's elevated at the moment. My pulse is also very slow for me. I have also suddenly developed diabetes and high cholesterol. They said it could all be connected to my thyroid issues and will hopefully improve. I also have gut issues and they are gonna investigate that too.

Re test everything in 8 weeks.

Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to Juddie

Levo upped to 100mcg for now (accord brand).

Good

It will take at least 6 weeks to start to notice improvements

Make sure you book early morning appointment in 8 weeks time

Last dose Levo 24 hours before test

So, I Have bought my own folic acid and some BetterYou 3000 vitamin d spray.

Which Better You - the red one with k2 - one spray = 1000iu - so take 3 sprays per day

If it’s Green one - one spray = 3000iu - so one spray per day

Only add one supplement at a time. Then wait 10-12 days to assess before adding another

Look at adding a separate magnesium supplement in afternoon or evening in 2-3 weeks

GP absolutely wrong not to prescribe for clear folate deficiency

Suggest you get your own folate supplement

Eg Jarrow methyl folate 400mcg and separate B12 supplement eg Nature Provides B12 drops

Initially start with just B12 supplement and a week later add separate folate

After a month slowly introduce Vitamin B complex …..changing to separate folate and separate vitamin B complex on alternate days

Remember week before ALL blood tests stop vitamin B complex…..instead take separate B12 and folate that week

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