Maybe answers at last?: Hello all. After... - Thyroid UK

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Maybe answers at last?

Evane7 profile image
6 Replies

Hello all. After researching on here and feeling awful for the last year, I finally got private tests done. My own gp had tested Vitamin d and I got a letter saying it was within normal range but never saw actual results. However, Thyroid doc has now flagged the following abnormalities-I don’t have ranges but letter reads as follows:

-Vitamin d 57.2 (very low as should be over 80)

-free t3 4.34 which he has also flagged as low.

Everything else is normal. He has prescribed either NPT 60 mg daily or Naturethroid 65 mg.

I had been to a neuro 3 times and rheumatologist twice with fibromyalgia type symptoms, plus awful fatigue, tingling, numbness, brain fog, ibs ect. And have been so worried. Could these symptoms all be down to these results? Am so glad he at least found something!

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Evane7 profile image
Evane7
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6 Replies
SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Have folate, ferritin and B12 been tested?

What about thyroid antibodies?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, or NDT (nature Thyroid) make sure to take last dose 8-12 hours prior to test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

IBS is often gluten intolerance

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Marymary7 profile image
Marymary7

As well as the excellent advice from Slowdragon . What is the b12 level. Numbness and tingling can come from this being low or a problem with b12 such as Pernicious Anemia.

McPammy profile image
McPammy

Hi.

I’m sorry to hear you’ve had such a rough year. All this could be down to your low or poorly converting T4 to T3. However, vitamins need to be at an optimum too.

I too have suffered terribly the past year and messed about. Being sent to neurologist which takes months and suffering on going. Sent to cardiologist. Finally after dismissive NHS Endocrinologist I went to a top private Endocrinologist. Now I’ve been diagnosed with low T3 = 3.9 the range is 3.7 to 6.0. He said I’m a poor converter. Along my journey the past year my B12 and ferritin were both too low. They’ve now been sorted with injections and medication.

My T3 remains low my T4 is at the ceiling of the range and TSH still too high. My private Endocrinologist has written to my GP so he can prescribe me T3. This is now my problem to be able to get T3 on the NHS. I had to give up my job as I am so bad. So I need NHS support as T3 is far too expensive in UK. I know I can get it privately from Germany for example. I did try NDT privately but I wasn’t great on that and my Endocrinologist took me off it! However, I do believe that if a leading Prof of Endocrine in UK has reported a patient requires T3 then the patient should be supported on the NHS. They cannot leave a patient suffering in the knowledge of what is required to resolve their health problem.

I’m going to push and push hard to get T3 on the NHS.

Hope you get sorted too.

Pam

barb62 profile image
barb62 in reply to McPammy

Where are you based McPammy, I have just been notified that Leicester are allowed to treat with T3

McPammy profile image
McPammy in reply to barb62

Wow excellent for people requiring it in Leics area.

I’m in Chester. I don’t know what will happen here.

Espeegee profile image
Espeegee

They have brains, but they way they're trained is not to think outside of the box, not to let the patient think for one minute they haven't a clue and to push the usual dogma that puts the patient firmly in their place because they couldn't possibly know more than someone who's spent all those years training (to fob off those who haven't 😉).

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