Levothyroxine makes no difference

[pw_70]

Hi All, I have Hashimotos and have been taking levothyroxine 100mcg for about 2 years. During this time I never noticed any improvement in my symptoms whatsoever. I still felt fatigued, brain fog, aching limbs. I stopped taking it a few months ago and still feel no different. My NHS GP refuses to let me see an endocrinologist and I can't afford private tests and doctors. Anybody else in the same predicament as me?

[Lalatoot]

Yes that is why we are on here.The first place to start is to get your blood results from the doctors so you can see what has been measured and what figures they are using to treat you.

Post them and the ranges (numbers in brackets after the result) on here and we can help.

[pw_70 in reply to Lalatoot]

Ok thank you. I will ask them to print this off from the last time I was tested while I was on levothyroxine which was about a year ago.

[nellie237 in reply to pw_70]

If that was about a year ago you must be due an annual blood test - you should ask for this too.

[SlowDragon Administrator]

Bloods should be retested minimum of annually

Do you always get same brand of levothyroxine

Which brand?

Insist that GP also test vitamin D, folate, ferritin and B12 as per guidelines

Also, if you are not already on strictly gluten free diet, you need coeliac blood test

So for full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common with Hashimoto’s

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)

Is this how you do your tests?

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/

Vitamin D NHS postal kit

vitamindtest.org.uk

[pw_70 in reply to SlowDragon]

Thanks for this info. At the beginning I was being given a couple of different brands from the chemist as the dosage was changed. The one I was taking for the longest time was Almus 100mcg. It is in a brown packet.. As I have stopped taking the levo for a few months now, do you recommend I go back on it and get everything tested in a month or so?

[SlowDragon Administrator in reply to pw_70]

Suggest you get tested now ...if not been taking any levothyroxine for 6-8 weeks

Likely to see high TSH, low Ft4 and Ft3 and low vitamin levels

[pw_70 in reply to SlowDragon]

will do, thank you

[SlowDragon Administrator in reply to pw_70]

Come back with new post once you get results

[pw_70 in reply to SlowDragon]

I'm still waiting to get in for my thyroid test but I just wanted to quickly thank you for mentioning gluten free diet and vitamin D. I have done this the last couple weeks. Im taking VitD and also Magnesium and on gluten free diet and I feel very close to normal again! The relief has been incredible. I am so happy I never thought Id ever feel well again Thank you so much.

[SlowDragon Administrator in reply to pw_70]

Astonishing isn’t it ......and particularly that medics never mention gluten intolerance as likely to be an issue

If GP doesn’t test vitamins, you need to test yourself via private testing options

[pw_70 in reply to SlowDragon]

Definitely. Not one GP has ever mentioned diet to me as being a cause of anything.. I am now considering full testing by functional medicine practitioner. The costs they sent back are

£300.00 Root cause blood profile£200.00 Small intestine Microbiota test

£95.00 Hair Tissue Mineral Analysis

£60.00 Deposit for consultation.

£655.00 Total to pay

In your opinion do you think it is worth it since I am already getting some relief from what I am doing or do you think getting the vitamins test done privately will be enough to see for myself what Im deficient in.

Cheers

[SlowDragon Administrator in reply to pw_70]

Definitely Wouldn’t bother with functional tests

Airy fairy nonsense

I would have done coeliac blood test BEFORE cutting gluten out

But no point going back on gluten just for that

Important to test vitamin D twice year when supplementing

Folate, ferritin and B12 at least annually

No point testing magnesium.

[pw_70 in reply to SlowDragon]

Brilliant thanks for that. You are right I should have tried to get them to do the the coeliac test. It's just that I quit the gluten for a few days out of curiosity to see if it would do anything, never thinking it would work at all. Then the improvements happened so quickly. I was as you say astonished. So I'm going to get these vitamin test done asap.