Advice please on where to go following private ... - Thyroid UK

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Advice please on where to go following private blood test

lesleyoc profile image
10 Replies

I have been diagnosed with Hashimotos (2018) and am now prescribed 50mg day Levothyroxine. For a while this was OK but now getting very tired and short of breath. This is very worrying. Just had a blood test at doctors but they only tested TSH and say I am within normal range. Have just started reducing tea and coffee and increasing water because my blood is so thick.

I want some advice please on where to go from here. Also, how much Vit D should I take to correct my levels - and for how long?

I did a private blood test and got results last week. They are:

TEST BY MEDICHECK – 8TH JANUARY 2021

CRP HS (Inflammation) <0-5> = 1.83

Iron (Ferritin) <13-150>= 135

Folate-serum <3.89-19.45> = 12.19

Vitamin B12-Active <37.5-187.5 = 87.1

Vitamin D <50-175> = 43.6 (outside normal range)

TSH <0.27-4.2> = 4.09

Free T3 <3.1-6.8> = 4.09

Free thyroxine <12-22> = 15.3

Thyroglubulin antibodies <0-115> = 359 (outside normal range)

Thyroid peroxidase antibodies <0-34> = 263 (outside normal range)

Any advice would be appreciated.

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SlowDragon profile image
SlowDragonAdministrator

50mcg is only a starter dose of levothyroxine

Contact GP for immediate 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 weeks after EACH dose change or brand change in levothyroxine

The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps (retesting 6-8 weeks each time) until TSH is definitely under 2

Many people when adequately treated on levothyroxine will have TSH well under one

Most important results are ALWAYS Ft3 and Ft4

Ft3 must be at least over 50% through range. Many people need Ft3 at least 60-70% through range

Ft4 at least in top third of range

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

SlowDragon profile image
SlowDragonAdministrator

Are you sure TSH and Ft3 have exactly same result?

Was this test done as recommended - early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Vitamin D is too low. Extremely common when under medicated

GP should prescribe 1600iu daily for minimum of 6 months

You maybe better self supplementing at higher rate

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s.

About 90% of primary hypothyroidism is autoimmune thyroid disease

High percentage of Hashimoto’s patients find strictly gluten free diet helps or is absolutely essential

Request GP does coeliac blood test FIRST before considering trial of gluten free diet

SlowDragon profile image
SlowDragonAdministrator

Vitamin D

GP will often only prescribe to bring 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...

NHS Guidelines on dose vitamin D required

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

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

ncbi.nlm.nih.gov/pubmed/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 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

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

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

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Web links that give information on where TSH should be on levothyroxine

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email at

tukadmin@thyroiduk.org

TSH should be under 2 as maximum

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

gp-update.co.uk/SM4/Mutable...

SeasideSusie profile image
SeasideSusieRemembering

lesleyoc

now prescribed 50mg day Levothyroxine. For a while this was OK but now getting very tired and short of breath. This is very worrying. Just had a blood test at doctors but they only tested TSH and say I am within normal range.

Medichecks:

TSH <0.27-4.2> = 4.09

Free T3 <3.1-6.8> = 4.09

Free thyroxine <12-22> = 15.3

What was your TSH result from your GP test?

Your Medichecks TSH is very close to the top of the range.

Just being "in range" is not enough.

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of it's reference range.

So your TSH is far too high, your FT4 is just 33% through it's range and your FT3 is only 26.75% through it's range. You are undermedicated and need an immediate increase in your dose of Levo, 25mcg now and retest in 6-8 weeks.

The fact that you were OK on 50mcg to start with and now are tired and breathless (which are symptoms of hypothyroidism) confirm the need for a dose increase.

Please ask your GP to increase your dose and to support this use the following information:

From a link SlowDragon gives:

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Link: gponline.com/endocrinology-...

Also, from NICE guidance for doctors:

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

1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

Many doctors are quite ignorant about treating hypothyroidism, believing that TSH is the only test that it important, this is totally inadequate as TSH is not a thyroid hormone, it's a signal from the pituitary for the thyroid to make hormone. If TSH is high it's telling the thyroid it needs hormone. FT4 and FT3 are the thyroid hormones and it's these results that show our thyroid hormone level and these re what is important. Your TSH is high, your pituitary is telling the thyroid that you need more thyroid hormone. Your FT4 and FT3 are low in range which shows your thyroid hormone levels are too low.

We thyroid patients have to learn and understand our condition and advocate for ourselves when up against a doctor who doesn't know much about it, if we don't we just remain ill.

Your raised antibodies confirm autoimmune thyroid disease, known to patients as Hashimoto's. You already know this from SlowDragon's reply to your previous post here:

healthunlocked.com/thyroidu...

and she gave you information about this.

Ferritin and Folate levels are good.

Active B12 is OK but personally I aim for 100+

Vitamin D <50-175> = 43.6 (outside normal range)

This is far too low and is in the Insufficiency category. The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L. Your GP may prescribe but you are better off buying your own.

*Are you taking a Vit D supplement? If yes, let me know the dose. If no then I can help you with what to buy and what dose.

lesleyoc profile image
lesleyoc in reply to SeasideSusie

Thank you for your advice. I shall make some notes and let it all sink in.The doctor's TSH test the other day came back as 1.48 so they think I'm OK. I am currently taking 5,000IU Vit D3, but as my blood test showed it was low I need to take a higher dose. How much should I take and for how long to get it up to scratch?

Thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to lesleyoc

lesleyoc

Vitamin D <50-175> = 43.6 (outside normal range)

am currently taking 5,000IU Vit D3, but as my blood test showed it was low I need to take a higher dose. How much should I take and for how long to get it up to scratch?

That is the dose that I would have suggested. You should retest in 3 months to check your level and when you have reached the recommended level (100-150nmol/L) then you'll need a maintenance dose (very likely for life) to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

D3 softgels such as Doctor's Best are oil based and well absorbed, tablets are the least absorbable.

As Vit K2-MK7 also needs fat so it's advisable not to take D3 and K2 at the same time as they will compete for the fat to be absorbed, maybe take at different times of the day, unless of course they are both oil based. I like Vegavero or Vitabay for K2-MK7.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

The doctor's TSH test the other day came back as 1.48 so they think I'm OK.

Was FT4/FT3 also tested? Just testing TSH is inadequate, it doesn't tell you the thyroid status. TSH is a signal from the pituitary, it's not a thyroid hormone. The thyroid hormones are FT4 and FT3 and it's testing these that tell us if we are adequately medicated, as well as how we feel. Sometimes only TSH is tested, if you feel well that is fine but if your GP wants to reduce your dose then refuse unless FT4 and FT3 are tested and only reduce if FT3 is over range - that is the test that tells us if we are overmedicated.

lesleyoc profile image
lesleyoc in reply to SeasideSusie

Thank you for all your advice. Will read it all through thoroughly.

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

says you have been on 50mcg since October

Last NHS test TSH was very low 0.9

Obviously things have changed substantially since October

That’s common with Hashimoto’s.....levels can swing a lot in early stages

Have you changed brand from Teva?

Did you remember to stop taking vitamin B complex for week before blood testing

lesleyoc profile image
lesleyoc in reply to SlowDragon

Thank you so much for all your helpful comments. I shall make a doctor's appointment to ask if he will increase my dose by 25mg. If necessary I shall show him the article by Dr. Toft. I did remember to stop taking vit B12 for a week prior to testing which I did first thing in morning before breakfast and Levothyroxine. I will ask for a coeliac blood test.

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