Help please

[nuiq]

I am on 1 mg of Levothyroxine and took my last tablet 24 hours before my blood test but my latest thyroid results were TSH 2 & FT4 23.7 The only time I feel well is when my TSH is lower than 1 and I explained to the nurse that for someone on Levothyroxine the TSH should be under 1 and I was experiencing all the usual symptoms, cold, joint and muscle pain, tiredness etc but she insisted that as far as the lab was concerned my results were ok. I then asked if she could put all of what I was saying to a hospital endocrinologist but after weeks of waiting they agreed with the results from the lab and that I was within the ranges and they had never heard of someone having to have a TSH under 1.

[greygoose]

Oh dear. Typical medical gas-lighting! Of course they've heard of a TSH under 1, who are they kidding!

I imagine your FT4 is over-range, isn't it? Please, always give the ranges because they vary from lab to lab. So, to have an over-range FT4, and a high TSH - because it is too high, especially for someone on thyroid hormone replacement - you're probably a poor converter and your FT3 is probably low.

But, labs know nothing about thyroid - and neither, apparently, does that endo! What you need is full thyroid testing including the FT3.

[nuiq in reply to greygoose]

I asked the nurse what the ranges were but she sort of glossed over it and said that according to the lab all the blood results were fine and I was well within the ranges for the TSH & FT4 which was when I asked her to get in touch with an endo. I have arranged to have a phone call with a GP to discuss things and he should be phoning tomorrow (I have even had to wait over a month for that). Thank you for your help I know I wont get a T3 test done we never do but I will try to be more determined when speaking to the GP.

[greygoose in reply to nuiq]

No, it's difficult to get FT3 tested on the NHS. They just don't understand the importance of it. But you could do private tests, so that at least you know.

Don't ask doctors or nurses about your results. They'd probably rather you didn't know/understand. They rarely like informed patients. Ask for a print-out at reception. It is your legal right to have one.

[nuiq in reply to greygoose]

Thank you, I will ask for a copy today but reception wont accept calls like that in the morning I will have to wait until this afternoon.

[greygoose in reply to nuiq]

You're welcome.

[nuiq in reply to greygoose]

GP was not a lot of help, as far as he was concerned he had to go with the lab results and he suggested looking to see if there was another reason for all my symptoms. I did point out that according to the same lab all my bloods were fine. Anyway I am definately going to go for a private blood test.

[SlowDragon Administrator]

Just testing TSH and Ft4 is inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Do you always get same brand levothyroxine at each prescription

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

is this how you do your tests?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

What vitamin supplements are you taking

When were vitamin levels last tested

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[nuiq in reply to SlowDragon]

I did everything you should before the test which I arranged for 8.10am on 11th April but it took time for the results and even longer for the endo to reply. Meantime I arranged a phone call with the GP which has taken over a month and is happening tomorrow hopefully. If I don't have a satisfactory call with the GP to resolve this I fully intend to have a private test. Thank you for your help.

[SlowDragon Administrator in reply to nuiq]

What’s the range on Ft4 ?

It looks high

[nuiq in reply to SlowDragon]

FT4 is 23.7 but the nurse said according to the lab results it is within the range. It has been difficult to get anyone to tell me just what the ranges the lab uses are.

[1tuppence in reply to nuiq]

Once you get a print out of your results, you will be able to see exactly what the ranges are.

[nuiq in reply to nuiq]

Dr was no help, as far as he was concerned if the lab said results were fine then he was accepting that so I am going to go for a private blood test. Thanks for your help.

[helvella Administrator]

nuiq,

Can you confirm my interpretation of your post?

You posted:

I am on 1 mg of Levothyroxine

We usually discuss levothyroxine doses in micrograms. One milligram is 1000 micrograms, which would be a huge dose. Did you, possibly, miss a decimal point? As in 0.1 milligram. Which is 100 micrograms.

It might appear the obvious interpretation but many of us have fallen into assumption traps far too many times!

[nuiq in reply to helvella]

Sorry meant to put 100 micrograms. Thanks for pointing that out.

[helvella Administrator in reply to nuiq]

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