Results stymied by the system

[Darty3]

About 9 weeks ago I took the plunge and started self administration of T3 and have gradually built it upto 25mcg (split into am/pm doses) with 100mcg T4.

My sense of smell returned, my muscles are not quite so weak, my stomach does not hurt when I bend over any more, and I want to live rather than die. Still suffer hunched gait, weak and painful muscles, dry mouth. No heart palpitations or bussiness.

I was about to get a private blood test done when I was ordered to the surgery for one instead. They only wanted to do TSH and T4 so I objected and asked for T3, Vits D and B12, ferratin etc Didn't ask for the gene test one or CRP as OK before. The doctor agreed.

The results came back but minus folate and T3 as follows:

Serum ferritin 130 ug/L (30.0-260.0)

TSH <0.01 mU/L (0.27-4.2) they are demanding I see the doctor to lower the T4 dose

free T4 20 pmol/L (11.0-22.0)

vitimain D 109 nmol/L (>51.0)

vitamin B12 545 ng/L (197.0-771.0)

CRP 1 mg/L (0.0-5.0)

So we are none the wiser as to T3 levels. Do you advise staying at this dose of T3 or raising again? And I thought when I see the doctor and they want to lower the dose I shall just refuse and if they press ask to see an endocrinologist. If only endos are to be allowed to prescribe T3, they should also be responsible for T4 as well.

Many thanks

[SeasideSusie Remembering]

Darty3

Do you advise staying at this dose of T3 or raising again?

It's impossible to say. You really need to do your private test to get your FT3 level (with TSH and FT4 at the same tme). Now you're up to 25mcg T3 you need to know your FT3 level before any further increase, so if 6-8 weeks has passed since your last T3 increase then you could do your private test now.

Your ferritin is fine and Vit D has just about reached the level recommended by the Vit D Society - 100-150nmol/L - although the Vit D Council recommends 125nmol/L.

Your B12 could be higher. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

An Active B12 test is more useful that a normal serum Total B12 test as you can have a decent Total B12 level but a low Active B12 level.

[Darty3 in reply to SeasideSusie]

Thank you so much.

[LAHs]

Just keep an eye on your blood pressure (BP). If your dose of T3 is not sending your BP up then you are not on too high a dose of T3. Regarding lowering your T4 dose you could lower it a tiny bit (like 1/4 tablet), but just as an experiment. Go back to your current dose if you start feeling ill. You must get lots of blood tests when you are trying to get to your perfect dose. It is a bit expensive at first but cost drops off to very little when you are perfectly dosed. What I recommend is get as many free tests via your GP but then get the ones he will not do privately. Avoid fighting with your doc, you will not win and you will get very stressed out. Get the tests done privately. When I am told to lower my dose (because my TSH is very low) I don't say no, I just continue to do what works for me.