Reaching out for help

[csavery8753]

Hi everyone

I'm really struggling, so unwell, I would be really grateful for some help and advice.

Firstly, I received this email from my private endo, is she correct in what she is saying? This reply was in response to me asking her to request bloods as my gp will only test TSH. It is 0.19 (0.35 - 4.94)

Her reply:

" There is no point in doing the T4 and T3….the T4 will be low because you are on NDT and the T3 result depends on when your last dose of meds were….it just tells me when you took your tablets.

The TSH takes 4 to 8 weeks to change….so that is what we use to tailor treatment….and it appears you are overtreated on NP thyroid but symptoms are not improving…..maybe its time to try either a different preparation or add some T3 and reduce the dose of the NP Thyroid or try Armour."

Until I can speak to my endo, I've had to stop taking my NP Thryoid as it seems to be effecting my brain. When I first started the NP a couple of years ago, I had to break the tablet up into 1/4s throughout the day, so this didnt happen. Is this normal?

Additional to the worrying brain symptoms, I've gained a stone since August (I eat very well) breathless, very heavy legs, extreme fatigue, no energy, sore muscles, very dry skin, Ezema on my elbows, extreme stomach and leg swelling.

Thank you in advance xx

[SlowDragon Administrator]

Looking at previous posts you have Hashimoto’s

What vitamin supplements are you currently taking

When were vitamin levels last tested. Important to test at least annually

Are you on strictly gluten free diet

Personally I would say it’s important to test to see where levels are

Yes it’s true that on NDT TSH is almost always low, Ft4 low, but it’s important to know where Ft3 and Ft4 are

Many people on NDT (and T3) split dose into 2,3, or even more smaller doses through day

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).

If/when also on T3, or NDT make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[csavery8753 in reply to SlowDragon]

Good afternoon SlowDragon, thank you very much for your reply :)I have spoken to my gp, she has now asked for all three tests again.

Other than your iron, VitD, B12 and adrenal supplementing, what other reasons would cause a severe reaction to the brain when supplementing with NP?

Thank you

[SlowDragon Administrator in reply to csavery8753]

Sorry I don’t know

I didn’t get on with any NDT

I prefer levothyroxine plus small split dose T3

I have DIO2 gene variation so brain needs regular and constant small doses of T3

[csavery8753 in reply to SlowDragon]

I think this is what I would like to do, will sleep on it as my foggy brain is allowing me to make any decisions :/

[jrbarnes]

In September some of the NP Thyroid lots were recalled for sub potency.

[csavery8753 in reply to jrbarnes]

Hi jrbarnesThank you for taking the time in replying, I had already asked the pharmacist, he said he wasnt aware of any problems. I will keep fighting for answers so frustrating