Endo appointment and liothyronine : Hello all, My... - Thyroid UK

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Endo appointment and liothyronine

DandyButch profile image
9 Replies

Hello all,

My endocrinologist appointment is coming up soon. I have had the blood test, but typical NHS they only test TSH.

My endo said, last time that I spoke to her, which was in June, she said my TSH was coming down and I may or may not, need an increase next appointment.

Whilst I have been very gradually feeling a bit better, I know I am not well still. I can now do some washing up before I need to crash. Lots of symptoms still there, although not as horrendous as they were. Still fatigued and weak.

I am worried that the endocrinologist may say that I do not need an increase in T3 . I have not taken T4 for over a year. I am certainly better on T3 than T4.

Any advice would help.

Thankyou

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DandyButch
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9 Replies
Jaydee1507 profile image
Jaydee1507Administrator

If the NHS is literally only testing TSH and you are on T3 only I would suggest you buy your own private test before seeing your Endo so that you can take your results along with you. You really do need to see FT3!

Have you recently tested key vitamins ferritin, folate, B12 & D3? If so what were the results?

What are you supplementing with?

Do you split your T3?

see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Its very important to allow 8-12 hours between last dose of T3 before blood test when testing FT3. This will show your stable blood level and not the peak when you have recentyl taken it.

FT3 graph
DandyButch profile image
DandyButch in reply to Jaydee1507

I cannot afford private blood tests, this is the problem. I lost my job because of this 16 months ago, and 9 months prior to that I was working shorter hours, so reduced income. All because of this.I had B12 tested about 18 months ago, and it was within range, although not optimal.

The NHS doesn't do a full vitamin and mineral test.

Thank you for replying.

Jaydee1507 profile image
Jaydee1507Administrator in reply to DandyButch

If you can find a helpful GP at your practice then they will usually test vitamins for you. Emphasis your fatigue and weakness. You would then need to be buying supplements to bring your levels up to optimal though.

What was your B12 result with reference range?

DandyButch profile image
DandyButch in reply to Jaydee1507

I have looked back at my blood tests , not that I am expert in reading them. They are a bit confusing. But these were done...B12 345ng/L 180.00 - 999.00 ng/L

Folate 12.4 ug/L

Ferritin 212 ug/L 30.00 - 400.00 ug/L

These were done May 2022.

I also had vit D tested, which I am taking supplements for from GP.

SlowDragon profile image
SlowDragonAdministrator in reply to DandyButch

Time to get all four retested

May 2022 is 18 months ago

B12 was much too low

Jaydee1507 profile image
Jaydee1507Administrator in reply to DandyButch

Ask GP to test for you. Won't cost a penny. Find a nice one to ask.

It's your B12 that will need the most attention. Are you vegan or vegetarian?

The cheapest solution would be to take a good methyl B complex like the one I have linked here.

B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...

If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.

If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good you can stop the stand alone B12 and just continue with the B complex.

amazon.co.uk/Liposomal-Soft...

Once you have finished the vit D supplement from the GP you will need to continue to supplement yourself. I'd recommend one with 3,000iu + vit K to help it go to your bones.

Your ferritin is high. Might be an idea to get a full iron panel done which GP might be able to do for you.

DandyButch profile image
DandyButch in reply to Jaydee1507

No, I am not vegan or vegetarian. I try to eat a balanced diet.I will ask my GP. I have a routine telephone appointment tomorrow.

Thankyou for your help.

serenfach profile image
serenfach

Cheat and lie. Look up the symptoms for low ferritin and folate, and then tell the GP that you have them. They are more likely to test then. Of course you should not have to do this, but with the way they treat us, its a game that we need increasingly to lie about. And of course you may well be low in them...

DandyButch profile image
DandyButch in reply to serenfach

Thank youI have just posted a follow-up from my gp appointment in a new thread. It is unbelievable that they cannot understand the effects of hormone deficiencies.

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