Getting an Endo Referral - Thyroxine levels not... - Thyroid UK

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Getting an Endo Referral - Thyroxine levels not right?

Ceebee26 profile image
13 Replies

Hi All,

I am wondering if anyone has had experience in their TSH levels being all over the place?

I fell pregnant in August, and when my bloods were done at 6 weeks it showed a TSH of over 10, despite me being on Thyroxine at 100mcg.

My Thyroxine was increased to 125mcg, then produced the following results in October -

Serum TSH level

0.36 miu/L (0.55 - 4.78)

Serum free T4 level

22.2 pmol/L (10 - 20)

Was told to reduce to 100MCG each day

November

Serum TSH level

2.41 miu/L 0.35 - 4.78

NO T4 LEVEL GIVEN

No Change in Medication

January

Serum TSH level

4.56 miu/L (0.35 - 4.78)

Advised should be under 2.5 for trying to conceive

So medication increased to 125mcg one day, 100mcg another

February

Serum TSH level

6.68 miu/L (0.35 - 4.78)

T4 16.6 pmol/L

10 - 20

Now it has swung the other way, I have been increased back up to 125mcg every day.... just not sure what the answer is, last time I was on that dose my T4 increased!

Can anyone help?

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SlowDragon profile image
SlowDragonAdministrator

In your post 2 months ago you confirmed you have hashimoto’s

As per previous replies

Have you now had vitamins tested?

Can you add results

Maintaining OPTIMAL vitamin levels helps improve conversion of Ft4 to Ft3 and helps steady levels

Have you done coeliac blood test?

Are you on strictly gluten free diet?

Do you always get same brand of levothyroxine?

Always taking on empty stomach and nothing apart from water for at least an hour after

Many people find taking levothyroxine at bedtime more convenient and can be more effective

With hashimoto’s we need dose high enough to suppress own thyroid output

Ceebee26 profile image
Ceebee26 in reply to SlowDragon

Hiya,

No I haven't tested Vitamins, although think I will order this from Medichecks - what Vits do you recommend testing?

I have changed to a strictly Gluten Free diet since Jan 5th, although I did not have a coeliac blood test prior to doing this...what is the relation between coeliac and my levels? Would being diagnosed Coeliac make a difference etc.

It is always the same brand, and I always take on an empty stomach first thing in the morning before anything else.

Perhaps I will start to take in the evening.

Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Ceebee26

Here’s link to first post

healthunlocked.com/thyroidu...

Hashimoto’s is as much a disease of the gut as the thyroid

Vitamin levels are frequently too low

What vitamin supplements are you currently taking?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Obviously before TTC vitamin levels need to be optimal

B12 and folate are Goldilocks vitamins. Important before pregnancy not to be low or too high

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

Folate supplements can help lower homocysteine

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Low ferritin frequent in hypothyroidism

endocrineweb.com/profession...

Hibs1 profile image
Hibs1 in reply to Ceebee26

You have to be eating gluten for the Coeliac disease blood test for at least 6 weeks, two meals a day or will get a negative blood test

SlowDragon profile image
SlowDragonAdministrator

Your results show you need dose increase in levothyroxine back to 125mcg per day

Bloods should be retested 6-8 weeks after each dose change

Probably never needed dose reduction in October

Never ever agree to dose reduction without getting FULL Thyroid and vitamin testing

All four vitamins need to be optimal

If Ft3 is not over range you are not over medicated

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Guidelines by weight

New NICE guidelines

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

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.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Though with hashimoto’s, poor absorption of levothyroxine is common.....some people need more

Ceebee26 profile image
Ceebee26 in reply to SlowDragon

Hello,

Just had my results from medichecks from yesterday -

CRP HS - 1.78MG/L (0 - 5)

Ferritin - 139 ug/L (13 - 150)

Folate - Serum - 15.75 UG/L (3.89 - 19.45)

Vitamin B12 - Active - 53.7 pmol/L (37.5 - 187.5) - Haven't taken B Supplement since last Tuesday

Vitamin D - 33.3 nmol / L (50-175)

TSH 4.23mIU/L (0.27 - 4.2) (last week result was 6.68)

Free T3 3.99 pmol/L (3.1 - 6.8)

Free Thyroxine - 19.2 pmol/L (12-22)

Thyroglobulin Antibodies - 355 kIU/L -(0 - 115)

Thyroid Peroxidase Antibodies - 297 kIU/L (0 - 34)

Have followed strictly gluten free since beginning of January - Thyroglobulin Antibodies have increased since my last test in October, Peroxidase Antibodies have slightly decreased.

Any Thoughts - currently back on 125mcg Thyroxine a day

SlowDragon profile image
SlowDragonAdministrator in reply to Ceebee26

So your vitamin D is far, far too low

Technically GP should prescribe 1600iu per day for 6 months

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

In practice you might prefer to self supplement and improve a bit quicker

GP will only prescribe to bring Vitamin D levels to 50nmol. But improving to around 80nmol or 100nmol may be better

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

vitamindsociety.org/pdf/Vit...

Once you Improve level, you will probably 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

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

Government recommends everyone supplement October to April

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

read about Magnesium and vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Bone pain

easy-immune-health.com/pain...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

intechopen.com/books/cell-s...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

what B vitamins are you taking?

You don’t want too much or too little B12 or folate when TTC

Antibodies.....yes that’s what I typically find....if TSH is too high due to being under treated, TG antibodies increase

When addressing food intolerances, if gluten is a problem, then if on strictly gluten free diet TPO antibodies slowly drop.

Some people also benefit from lactose free diet, though that may only need to be for short term

coeliac.org.uk/information-...

Currently your conversion is poor

Ft4 at 72% through range

Ft3 only 24% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

SlowDragon profile image
SlowDragonAdministrator in reply to Ceebee26

So this test was done when still on 100mcg .....or how long on 125mcg?

Do you always get same brand of levothyroxine?

Bloods always done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

Ceebee26 profile image
Ceebee26 in reply to SlowDragon

Thank you for all that.

No only back on 125mcg for 5 days before that was alternating at 125mcg one day and 100mcg another at doctors request..but they put me back up due to high TSH.

I dont really understand the whole conversion thing I must admit.

I will try and redo the tests in 6 weeks.

Bloods always taken at same time, and I'm not sure about branding as I've never 0aid much attention to it!

I usually take meds before bloods, guess that isn't advisable?

SlowDragon profile image
SlowDragonAdministrator in reply to Ceebee26

So you are likely under treated

Taking levothyroxine before blood test causes false high Ft4 result

So remember at test in 6 weeks time ....get blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

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...

Ceebee26 profile image
Ceebee26 in reply to SlowDragon

Ok will do that.

Also read about taking it in the evening before bed rather than the morning, is that advisable?

SlowDragon profile image
SlowDragonAdministrator in reply to Ceebee26

Many of us find it more convenient and and may be more effective

When getting bloods tested, you just need to adjust timing

Eg if testing Monday morning, delay Saturday evening dose until Sunday morning, delay Sunday evening dose until AFTER blood test Monday morning

Take a Monday evening dose as per normal

greygoose profile image
greygoose

Do you always have your blood draw at the same time of day?

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