7 weeks in on NDT and I really need some help/advice...

[Jules_Essex]

Just wanted to post as I'm really in need of some more advice I've just had a blood test 6 weeks after being on Efra and the results are:

TSH 0.13 (range 0.3 - 5.6)

t4 - 9.3 (range 6.3 - 14)

My results pre- Efra when I was 100mcg of levo and 20 mcg of T3 a day were:

Free T4 is 9.4 pmol/L (range 9-23)

Free T3 4.8 pmol/L (range 2.5-5.7)

TSH 0.12 (range 0.3-2.0)

I've basically emailed my endo to say that I'd like to increase my NDT dose now I've been on it for 7 weeks and he's said that based on those recent bloods he doesn't want me to increase as he's not happy that my TSH is below range - which is what every endo I ever see always says since I've been on T3!

So basically I'm not sure what to do - do I just ignore his advice and increase anyway?

Since starting the NDT literally nothing has happened - I've not had any symptom improvements but I also don't seem to have any side effects.

The endos next plan is to try me on some DHEA - just wondered what people thought of that?

One other thing to mention is that I also had my B12 checked again on that recent blood test and it was 447 (range 180 - 914). I had my last B12 injection on the 19th August so I'm a little concerned that the levels seem quite low in the range given that I'm not due another injection until the 12th November!!!

Just really unsure of what my next move should be?

[shaws Administrator]

When someone changes from T4 to NDT, I don't believe the blood test results can correlate due to the fact that levothyroxine is T4 only and NDT contains T4, T3, T2, T1 and calcitonin.

I shall give you the following link which might be helpful.

web.archive.org/web/2010103...

When changing over to NDT it is usual to increase the dose slightly every two weeks taking into account your pulse/temp and if either goes too high or you feel quite overstimulated you drop to the previous dose.

This is another link and this doctor, like many other doctors use a similar procedure.

web.archive.org/web/2010112...

Your Endo says he's most concerned about about too much but the blood tests only give the result and not how the patient is feeling. It's how we feel which dictates our dose and not to be restricted to keep us 'within a range' whilst feeling awful.

(i am not medically qualified and have hypothyroidism which was undiagnosed/unmedicated. I am now on T3 only.)

[Jules_Essex in reply to shaws]

Sorry I'm not sure if I made it clear in my post above but I was on levo and also liothyroinine (T3) before I switched over to the NDT so I was already taking active T3 before the switch - I'm not sure if that makes any difference to the results?

I can definitely say I've never ever felt overstimulated on any dose of T3/NDT - my perpetual state of being is to want to sleep for about 90% of the day

[shaws Administrator in reply to Jules_Essex]

I had omitted the second link which I've now put in above. Going by your symptoms alone it might mean that your T4/T3 wasn't effective if the Endo only went by blood tests. These are two excerpts from the second link:-

'ONE OF THE WORST DISASTERS in the history of medicine is the

endocrinology specialty’s modern guidelines for diagnosing and

treating patients whose bodies are under-regulated by thyroid

hormone. These guidelines and the beliefs they’re based on have

caused a worldwide public health crisis.'

"Researchers who fail to recognize that the cause of the

patients’ symptoms is under-regulation by thyroid hormone do

studies looking for other causes. Since they are blinded to the real

culprit, their fruitless efforts squander billions of research dollars.1

and the first is 'The Proper Use of Thyroid hormones'

[greygoose]

Well, if your endo is just dosing by the TSH, I would ditch him pretty quick! The TSH is bound to be low/suppressed when you're taking any form of T3. And the only result to look at is the T3, and take note of symptoms. If he doesn't know that, then he's not much of an endo! It's pretty basic, after all.

[Jules_Essex]

Just wanted to update this as I've not been online for a while

I've had a reply from the consultant who has basically said he can't advocate going higher than 2 grains and that if I do I'm in danger of becoming hyper I don't want to ditch him as he's the 4th endo I've seen and is much better than any of the others so far. Even though I've been on T3 for a few years and had a supressed TSH as a result it totally freaks every single endo out and they won't ever prescribe a higher dose so I always seem to butt heads with them at this point

Not sure what to do at this point - do I just ignore his advice and up the dose to 3 grains and see what happens?

Unfortunately my local hospital won't test T3 as policy - they'll only test TSH and then T4 only if your TSH is out of range. I can't afford a private blood test at the moment.

I've been on the NDT since August now and literally nothing has changed since taking it - for the worse or for the better I just really expected 'something' to have happened by now

I'm now taking 2 grains in the morning rather than splitting the dose and taking another before lunch as I found it really hard to remember and as it appears to make no difference to any of my symptoms anyway I didn't think it would matter?

Overall I'm just feeling pretty despondent as I feel like every time I try something I get nowhere. I've got my Vit D 'optimal' with no effect, I've been having B12 injections for 3 years and they have no 'effect', I've worked really hard to get vitamins and minerals 'optimal' with no effect, I added T3 in addition to my levo with no effect I literally feel like I could take the entire bottle of Efra and nothing would happen as my body just seems to have literally no response to anything

Any advice would be greatly appreciated I'm even thinking of ditching the NDT and going back to levo/T3 as so far nothing has changed for the better since being on from August and it's costing me a lot more money each month

[Jules_Essex]

I just wanted to give this a bump to see if anyone could offer me any advice?

Thanks