thyroxine level issues

[Evagravy]

I have been on thyroxine since 1979. I was obviously started on a low dose then slowly increased until I was on 225mg.

I appeared to be stable but struggled all the time with my weight and muscle spasms

I started taking sea kelp, when my thyroid test was done the dr said my levels were out and reduced thyroxine, I then gained weight again. My thyroid level went up to 11.5. Thyroxine now increased back to 200mg and I am steadily losing weight again. I am hopeful that my medication will now stay at this level and keep me steady

[SeasideSusie Remembering]

Evagravy

Have you stopped the sea kelp? It contains iodine which is not recommended for those of us with hypothyroidism. Iodine solution used to be used to treat overactive thyroid before the current radioactive iodine treatment so it can cause hypothyroidism or make hypothyroidism worse. This is possibly why you gained weigjt and your "thyroid level" (presumably TSH) increased.

Have you had FT4 and FT3 tested as well as TSH? It's important that these are tested because they are the thyroid hormones amd TSH is not, TSH is a pituitary hormone and can't tell us our thyroid status but unfortunately mkst doctors don't know this. T4 is a storage hormone and has to convert to T3 which is the active hormone that every cell in our body needs so it's actually the FT3 test which is the most important.

If your GP can't or won't do the full thyroid panel then you might want consider private testing (£26.10 is the cheapest for the basic panel) if your budget allows, many of us have to do this.

[SlowDragon Administrator]

Low vitamin levels are more common as we get older

Low vitamin levels also much more common on levothyroxine

Request GP test vitamin D, folate, ferritin and B12

Or, if funds allow get full thyroid and vitamin testing in New Year

Don’t test until At least 6-8 weeks after stopping kelp

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Do you know if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

monitormyhealth.org.uk/full...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[Evagravy in reply to SlowDragon]

what you are saying is all new to me. I have had no advice about taking thyroxine. Only just learnt to take it on an empty stomach and an hour before food after all these years. Maybe now I can get more advice and find out how to feel more human again. Thankyou

[SlowDragon Administrator in reply to Evagravy]

Get FULL thyroid and vitamin testing 6-8 weeks after changing how you take your levothyroxine

Levothyroxine is extremely fussy hormone.

Must always be taken on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours

ALWAYS get same brand levothyroxine at each prescription too

Test thyroid levels early morning and last dose levothyroxine 24 hours before test

you may possibly need to reduce dose levothyroxine slightly after next test….if you weren’t taking it correctly before

But low vitamin levels are also likely

Come back with new post once you get results in Jan/Feb

[Evagravy in reply to SlowDragon]

how do I test myself. Is there a test kit or something that I can purchase

[SlowDragon Administrator in reply to Evagravy]

I gave you links to testing in my first reply

Try GP first …..but they rarely test more than TSH ….and Ft4 if you’re lucky

Ideally include thyroid antibodies and vitamins in test - Medichecks or Blue horizon

Examples of other members private test results

Medichecks

healthunlocked.com/search/p...

Blue horizon

healthunlocked.com/search/p...

Getting all four vitamins tested and improved to optimal levels frequently improves conversion rate of levothyroxine (Ft4) to active hormone (ft3)

Many people find they need to supplement vitamin D and vitamin B complex continuously

Some need extra B12 initially

Some need to improve low iron or ferritin

Always test vitamin levels BEFORE starting any vitamin supplements

[rustyempire]

wow 200mcg is a high dose..I wonder if you are not converting properly!? With the correct labs in hand post back here for input. Remember to test first thing in the morning, no Levo before and on an empty stomach.

Stop the Thyroid Madness graphic with recommended labs

[Evagravy in reply to rustyempire]

Thankyou this is all very helpful. I will write down what you say and look into it all