Another NHS endo

[Guest guest]

On 30 mcg T3 in a split dose since the beginning of July. Current results, for

what they are worth:

TSH (0.35-6) 0.06

FT4 (9-26) 5.1

FT3 (2.8-7) 5.3

I have seen the endo this morning. I told him that I had felt great last time I

saw him, when I'd just gone up from 20mcg to 30mcg, but that all the old

symptoms are coming back and the insomnia, weight gain, hair loss and brain fog

are particular worries.

He tells me that on my current results I am clearly over-replaced and I am

getting to the age where I will damage my bones and have an abnormal heart

rhythm if I carry on like this. He wants me to drop back to 20mcg.

He went through the hyper symptoms check list several times and I have explained

that I am not anxious, I am not shaking, I am not hot and sweaty yada yada.

Also he wants me to do two blood tests, one without taking any T3 (which is what

I usually do) and one after I have taken T3.

My instinct is that the hour over time that I spent waiting to see this man was

time wasted and that he has failed to recognise that I am actually

under-replaced.

Any thoughts anyone?

D

[Guest guest]

Sheila, swap your endocrinologist for one who knows what he is

talking about. You obviously have some underlying cause going on that needs to

be investigated. Check out the attached document and go through this by way of

a process of elimination to see if the cause is there - I'll bet it is.

How on earth can a doctor say that you are over medicated with a

free T4 of 5.1 and a free T3 of 5.3 - when that result is slap bang in the

middle of the reference range. He must be 'guessing' that you are over replaced

because your TSH is suppressed, but when the pituitary recognises that there is

sufficient thyroid hormone in the blood, so has no need to secrete any thyroid

stimulating hormone to nudge the thyroid gland into secreting more thyroid

hormone. He should know this. If you were over-replaced, not only would your

TSH be suppressed, but your free T4 and free T3 would be very high in the

reference range. You would also be suffering with symptoms of hyPERthyroidism.

It's up to you Dolly, but if this was me, I would not bother

with the tests he wants you to do, blood tests are absolutely pointless on

anybody taking any form of T3. Even the past President of the BTA gave evidence

in court to say that patients should not take their thyroid hormone replacement

on the morning they have their blood drawn, otherwise, the results would be

flawed.

If you feel the need to see another more knowledgeable endocrinologist,

let me know and I will send you our list of recommended doctors, but really, if

you are self treating, you can look after yourself and titrate your dose

according to any symptoms you might have, but if you are being prescribed NDT

by the NHS, then carry on collecting your prescriptions and if they force you

to have blood tests done to try to monitor your levels, don't take any thyroid

hormone on the morning you have your blood drawn, take it straight afterwards….but

argue like mad with this doctor and tell him that both patients and doctors

should agree when a medication is changed, and that you have decided you are

not going to lower your dose as this is your body.

Also, the very same argument as far as osteoporosis and Atrial

fibrillation goes apply to taking too much T3 as it does to taking too much T4,

a huge study was done (which I cannot lay my hands on right now - I think I

originally got the study from , so you might ask her if she can remember

it) that shows this, but doctors never, ever warn you about getting heart or

bone problems if you take Thyroxine-only.

Luv - Sheila

On 30 mcg T3 in a split dose since the

beginning of July. Current results, for what they are worth:

TSH (0.35-6) 0.06

FT4 (9-26) 5.1

FT3 (2.8-7) 5.3

I have seen the endo this morning. I told him that I had felt great last time I

saw him, when I'd just gone up from 20mcg to 30mcg, but that all the old

symptoms are coming back and the insomnia, weight gain, hair loss and brain fog

are particular worries.

He tells me that on my current results I am clearly over-replaced and I am

getting to the age where I will damage my bones and have an abnormal heart

rhythm if I carry on like this. He wants me to drop back to 20mcg.

He went through the hyper symptoms check list several times and I have explained

that I am not anxious, I am not shaking, I am not hot and sweaty yada yada.

Also he wants me to do two blood tests, one without taking any T3 (which is

what I usually do) and one after I have taken T3.

My instinct is that the hour over time that I spent waiting to see this man was

time wasted and that he has failed to recognise that I am actually

under-replaced.

Any thoughts anyone?

D

1 of 1 File(s)

WHY THYROID HORMONE REPLACEMENT MAY NOT BE WORKING FOR YOU.doc

[Guest guest]

Hi D,

Also he wants me to do two blood tests, one without taking any T3 (which is what I usually do) and one after I have taken T3.Oh golly..... what would that prove, I wonder???

So let's put this straight.... you are currently taking 15 mcg T3 twice a day; were doing great to start with on this dose, now you are flagging and feel under-medicated. Well.... I why am I not surprised?

When on T3-only medication a body needs between 70 and 150 mcg T3 per day. This is an average, of course, but I think one can safely assume that at least 50-70 mcg of T3 in divided doses are needed to support a body during a normal day.

He tells me that on my current results I am clearly over-replaced and I am getting to the age where I will damage my bones and have an abnormal heart rhythm if I carry on like this. He wants me to drop back to 20mcg.

Oh, bullocks ! If anything, 30 mcg T3-only per day would put you at risk for thyroid undermedication. ... getting to the age? – my foot! Perhaps you should offer to undergo a bone density scan and an ECG, so he can sleep re-assured at night.

My instinct is that the hour over time that I spent waiting to see this man was time wasted and that he has failed to recognise that I am actually under-replaced.Go with your instincts, D. If it feels right, it IS right. If or when you overdose you will be the first one to know, even without a blood test; and I assure you, you won't like it. Nobody in her or his right mind would deliberately overdose on thyroid hormone.... unless they were masochists.

TSH (0.35-6) 0.06FT4 (9-26) 5.1FT3 (2.8-7) 5.3For what it's worth (not much) – those results do not indicate overmedication IMO. For as long as your FT3 is within the ref range for up to 12 hours after ingestion of T3 you are not overmedicated. If you were, you would FEEL hyper.

However... you mention hair loss .... have you checked your mineral and vitamin levels recently? What's your iron like? Vit D3? B12? Magnesium?

With best wishes,

[Guest guest]

Thanks

I think we're on the same wavelength.

Ferritin is a tad on the low side, but I am continuing to try to raise it, D and

B12 are fine. Also bones when I had a DXA scan in Feb and I told him repeatedly

that the T3 had fixed my palpitations.

Thanks Sheila

I'm not currently self treating - this T3 is prescribed for me by the NHS, but I

am beginning to think about it.

It would certainly beat taking 4 hours out of my day to spend 15 minutes with

someone who obviously doesn't know very much at all about thyroid disease.

D