Should I stop Levothyroxine: Hi I was wondering... - Thyroid UK

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Should I stop Levothyroxine

FESpex profile image
24 Replies

Hi

I was wondering if anyone had an opinion.

I have been on the lowest dose of thyroxine since November 2017 after my T4 was hovering over lowest point in range (and had been for some years) I felt it might improve my general health and energy.

Prior to thyroxine

Result (Range)

TSH 3.52 (0.27 - 4.2)

T4 FREE THYROXINE 12.4 (12.0 - 22.0)

FREE T3 4.9 (3.1 - 6.8)

After two months on thyroxine in January 2018

TSH 1.51

T4 16.6

Free T3 4.9

April 2018

Just TSH done by Docs result of 1.09

Overall I don’t feel more well. Most difficult is that I have if anything even more aches and stiffness in joints and limbs.

I am constantly far too hot and that is worse than before too.

I also sometimes get a racing heart which I didn’t before. (I’ve had tests on my heart and they were fine)

I wondered if I should consider stopping thyroxine and request the ok from the doc.

Thanks

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FESpex
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24 Replies
Nanaedake profile image
Nanaedake

Please add the laboratory ranges as we can't interpret the results without them. They are the figures in brackets after the results. Lab ranges vary from lab to lab and country to country. Also, if you have thyroid antibodies then please add the test results. We need this information to give better suggestions.

FESpex profile image
FESpex in reply to Nanaedake

Thanks. Will do

SlowDragon profile image
SlowDragonAdministrator

You are likely just still on too small a dose. Majority of patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

Typically blood tests are redone 6-8 weeks after starting on 50mcg. Dose is increased in 25mcg steps retesting 6-8 weeks later each time. This repeats until TSH is around one and FT4 towards top of range and FT3 at least half way in range

At same time it's essential to test vitamin D, folate, ferritin and B12. Extremely common that some or all are too low and need supplementing to help thyroid hormones work well

Also essential to test both TPO and TG thyroid antibodies to confirm if cause of being hypothyroid is due to autoimmune thyroid disease also called Hashimoto's

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 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 .

FESpex profile image
FESpex in reply to SlowDragon

Thank you. That’s very useful. NHS only test TSH so I used medichecks and gave my GP a lot of info and she checked with endrochronologist so did her best. I’ll look at doing the more wide checks and see if I can take it further with the GP.

soos49 profile image
soos49 in reply to FESpex

Your amazing !

FESpex profile image
FESpex

Thanks!

Aurealis profile image
Aurealis

This is a strange question but are your hands and feet colder than the rest of you?

FESpex profile image
FESpex in reply to Aurealis

No, they are about the same.

Although my sensation is that I am far too warm all the time, my skin is not very warm to touch.

waveylines profile image
waveylines in reply to FESpex

Fespex -feeling hot is a symptom but does not mean you are hot. A specialist told me that. Check your temperature. Its a sign in your case that you are undermedicated as others have said. You need an increase. I would also make sure that your vitD, b12, iron & ferritin are optimum. You need to get your tsh under one & your ft4/ft3 in top third of range.

Aurealis profile image
Aurealis

Yes that’s the sort of thing I mean. I think it’s low temperature but you feel warm due to envirment being warmer. So not warm due to over treatment. You sound undertreated. Maybe you need a dose increase?

FESpex profile image
FESpex in reply to Aurealis

Thanks. Beginning to look that way.

Nanaedake profile image
Nanaedake

Have you had your vitamin D levels tested? Low vitamin D can cause aches and pains in joints and limbs and can also contribute to low calcium levels which can drop during menopause in women or with age in men. Low vitamin D leading to low calcium can contribute to heart problems. Worth checking out if not already done so. If you have a result for vitamin D then do post it here. Docs often say it's fine even when low in NHS range but it can cause problems if it's not optimal. Low vitamin D and other nutrient levels can contribute to sluggish thyroid function. If you haven't investigated vitamin levels yet, it could be prudent to do so before increasing thyroxine dose or if you increase thyroxine and still feel unwell then low nutrient levels could be the cause.

FESpex profile image
FESpex in reply to Nanaedake

Thanks. No my vit levels haven’t been tested. I will look into it.

Nanaedake profile image
Nanaedake in reply to FESpex

If doctor won't do vitamin D test and you live in the UK, you can get your own test done for about £28 from City Assays cityassays.org.uk/Vitamin%2...

Many on this forum have used them and the lab is reliable and used by the NHS so should be accepted by your doctor. I found them very efficient.

Do let me know the outcome if you pursue this so we can all learn more and help each other better.

Other vitamins to check out are ferritin, folate and vitamin B12 and worth checking calcium levels too.

1dolly profile image
1dolly

I had terrible pain in my joints especially hips when on levo - was on too low a dose but just think it didn't suit me. I have changed to NDT and aches/pain have totally gone.

FESpex profile image
FESpex in reply to 1dolly

Thank you. That’s very useful! I will have a discussion with my doc.

1dolly profile image
1dolly in reply to FESpex

The doc probably won't prescribe NDT or approve of it! I would try to get optimal levels on levo and see if it improves - good luck!

FESpex profile image
FESpex in reply to 1dolly

Doc has already refused to up the Levi dose to get some benefits. It was a battle to get it in the first place

1dolly profile image
1dolly

I have sent you a message - don't give up battling!

FESpex profile image
FESpex in reply to 1dolly

Thank you. That’s kind

Elston profile image
Elston

What did you feel like before you had the test done? .k

FESpex profile image
FESpex in reply to Elston

Hi

I had been tired and lethargic and just feeling ‘dull’.

Elston profile image
Elston

Maybe ask doctor if you can take a vitamin b pill too along side? Also try eating fresh or smoked salmon or any fish really as it's so good for the brain .

FESpex profile image
FESpex in reply to Elston

I started taking vit D with magnesium and B12 and felt almost instantly better. I stopped the thyroxine two weeks ago and have noticed no change. Maybe the problem all along was vitamins!

Thanks

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