T3 no longer prescribed - feeling dreadful

[Applet]

Hi I have been taking levothyroxine for around 20 years. A few years ago the endocrinologist added in T3 which seemed to help with energy levels etc. My GP will no longer prescribe T3 due to cost and I feel worse than ever - exhausted, cold etc.

My GP suggested I could source my own T3 so I'd be interested to know if anyone has a recommended supplier.

My latest test results below in case useful (they won't test for T3 anymore).

Serum free T4 level 14.7 pmol/L [12.0 - 22.0]

Serum TSH level 2.13 mu/L [0.27 - 4.2]

Serum vitamin B12 level 402 ng/L [197.0 - 771.0]

Serum folate level 11.2 ug/L [3.9 - 25.0]

Serum total protein level 64 g/L [66.0 - 87.0] Below low reference limit

Serum total 25-hydroxy vitamin D level 58 nmol/L [50.0 - 120.0]

[shaws]

Your TSH is too high - should be 1 or lower.

B12 is too low, you need to supplement with B12 methylcobalamin to get it towards 1,000 (new recommendations).

FT4 is too low to enable decent FT3.

I shall add SeasideSusie re your other results as they are not good.

I shall add information re T3 shortly as my computer is playing up.

[SlowDragon Administrator]

If you were originally prescribed T3 on recommendation of NHS endocrinologist then you should be able to remain on it

british-thyroid-association...

british-thyroid-association...

Go back to GP and insist you continue with NHS T3. They MUST refer you back to an endocrinologist before even considering withdrawing it

bbc.co.uk/news/health-42179765

Prof Toft -past president of the British Thyroid Association and leading endocrinologist - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

Write to your MP too

You are under medicated

TSH should be around one (or less) and FT4 towards top of range.

Did you do this test as early as possible in morning and fasting and don't take Levo in 24 hours prior to test?

Vitamin D is too low - aim for around 100nmol

B12 borderline

No ferritin test?

Get FT3 tested privately

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

How long since T3 stopped?

[shaws]

I note that SlowDragon has responded and am sure her links will be similar to the ones Clutter posted on the link below:

healthunlocked.com/thyroidu...

[Clutter]

Applet,

You are undermedicated to have TSH 2.13. Didn't GP increase Levothyroxine dose when T3 prescription was withdrawn?

B12 402 is unlikely to be deficient but if you have symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice.

Folate is optimal.

VitD is insufficient. 100-150 nmol/L is optimal. I would supplement 5,000iu D3 daily x 6 weeks then reduce to 5,000iu alternate days and retest in Mar/April. VitD should be taken 4 hours away from Levothyroxine and T3.

Low total protein google.co.uk/search?q=total...

I would write to your GP (cc your MP) and tell your GP that the CCG does not have the authority to tell GPs what not to prescribe and you believe your GP is in breach of GMS contract by with-drawing treatment you have been told you need. Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your GP to withdraw T3.

mills-reeve.com/files/Publi...

[Applet]

Thank you all so much. I will write to the GP and see if they will prescribe again. The test results were a couple of months after T3 was withdrawn

[Applet]

I am due to have another thyroid test soon so will post updated results.

[Applet]

Sorry meant to add, I was previously on 125mcg levo plus 40mcg T3. Am now on 150mcg levo only.

[SlowDragon Administrator in reply to Applet]

Well 20mcg of T3 is roughly equivalent to 100mcg Levo

So your dose has dropped by at least 150mcg

Make sure to get vitamins retested too

Typical posts after T3 stopped

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels

thyroiduk.org/tuk/get_invol...

[Applet]

Hi again - my latest blood test results are

Serum free T4 level 19.1 pmol/L [12.0 - 22.0]

Serum TSH level 1.43 mu/L [0.27 - 4.2]

They didn't test T3. If anyone has any views on the above result, that would be much appreciated. Thanks all