Steroids and Levothyroxine

[technogran]

I've been on levothyroxine for over 20 years with varying results, in fact, I'd given up on adjusting the dosage and after persuading the doctor was allowed to be on a higher dose of 150mg daily however as a result of another illness (Giant Cell Arteritis) have been on Prednisolone steroids for over a year now which I fear may have interacted with the levothyroxine . Last year I was called in cos I had a figure of 32 (I don't even understand what that means) and it was suggested I drop the thyroxine dosage but I didn't and then a few months ago the doctor phoned me at home to say my number was up to 39 which he was very concerned about and thought enough was enough and I had to drop to at least 125mg so I did and I have been on it for about two months resulting in creeping weight gain, weepiness and fatigue. I'd already jumped up two dress sizes with the steroids but am concerned that the additional weight caused by the slower metabolism will increase my breathlessness and fluid retention. I've had my heart and lungs checked twice because of it and am pleased to say my results were clear. Can someone please explain the figure of 39; why that figure has risen from 32; if steroids and levothyroxine interact negatively; and a pathway to slow the progress of weight gain if I have to stay on 125mg a day. thanks.

[SlowDragon Administrator]

Highly likely the result was Ft4

Typically the range on Ft4 result should be between 12-22

But just testing TSH and Ft4 is completely inadequate

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 D, folate, ferritin and B12 levels

Do you know if you have ever had thyroid antibodies tested?

Is your hypothyroidism due to autoimmune thyroid disease?

Ask GP ?

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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?

if you take levothyroxine before blood test you get FALSE high Ft4

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

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...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

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

Dose by weight is approximately 1.6mcg per kilo of your weight

So work out your weight in Kg

Eg 14 stone 9lbs in weight is 92kg x 1.6mcg = 150mcg levothyroxine per day is likely dose required

12 stone 3lbs is 78 kg x 1.6mcg = 125mcg

Some people need more, some a bit less

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

[technogran in reply to SlowDragon]

Thank you so much for your very comprehensive answer which I will print off and take to doctor. I have never had any information about the timing of the blood test although I do have regular blood tests which include some vitamin testing because I'm on steroids. Interestingly, one of the things my doctor feared was osteoporosis but now that I'm on steroids I am able to get an infusion of Zoledronic Acid which only takes half an hour and gives me protection against osteoporosis for a whole year.

[SlowDragon Administrator in reply to technogran]

Timing of testing is patient to patient tip. Though thyroid specialist endocrinologists do advise this, GP likely unaware

New NHS England Liothyronine guidelines July 2019

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...

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 also clear on dose required

bmj.com/content/368/bmj.m41

[Barrister]

I always found that when I was taking steroids, my TSH dropped and I was accused of taking too much thyroxine. It was only once I pointed out to my doctor that when I stopped the steroids, my TSH returned to normal that he started to investigate and sure enough, the next time that I had to take a course of steroids, my TSH dropped again and he agreed with my findings. I now take steroids several times a day (Addison’s Disease/Adrenal Insufficiency) but am on T3 only so don’t have the problem of having TSH testing.

Clemmie

[technogran in reply to Barrister]

Thanks so much. I now realise I should get the full result following a blood test for thyroid so I am in a position to debate whether the steroids are skewing the reading.

[technogran in reply to Barrister]

Should have said I've been on a steroids every day for almost 14 months and its set to continue for another year. I started on a very high dose of 60mg a day but am now tapering but am unable to stop steroids.

[SlowDragon Administrator in reply to technogran]

So it’s absolutely essential for GP to test TSH, Ft4 and Ft3

He should add note to lab on the form....otherwise lab frequently still won’t test Ft3