Hypothyroidism UK (med probs)

[EnduringAngel]

I live in the UK and our TSH level is so high here, I couldn't get treatment on the NHS, so my private dr has been prescribing me levothyroxine for over a year. At first it seemed to help, but not anymore. I'm still showing so many symptoms and I don't feel as if my thyroid is working properly.Am still so overweight and have cold hands and feet etc.
The private Dr has suggested trying T3 instead. As apparently some people with ME and fibro have problems converting.

I was wondering if anyone is taking T3 and how they found it?

Also, I was wondering if anyone in the UK can tell me where they buy their T3 cytomel from?
I'm not well enough to travel back to my private GP but she can't prescribe without seeing me.
I know you can buy it online, but am worried about the quality etc.

Any advice would be appreciated.

In desperation
A x

 

[Ema]

I live in the UK and our TSH level is so high here, I couldn't get treatment on the NHS, so my private dr has been prescribing me levothyroxine for over a year. At first it seemed to help, but not anymore. I'm still showing so many symptoms and I don't feel as if my thyroid is working properly.Am still so overweight and have cold hands and feet etc.
The private Dr has suggested trying T3 instead. As apparently some people with ME and fibro have problems converting.

I was wondering if anyone is taking T3 and how they found it?

Also, I was wondering if anyone in the UK can tell me where they buy their T3 cytomel from?
I'm not well enough to travel back to my private GP but she can't prescribe without seeing me.
I know you can buy it online, but am worried about the quality etc.

Any advice would be appreciated.

In desperation
A x

Are you planning to take T3 only or just add a bit of T3 to your T4?

Have you had any recent labs -FT3/4 especially?

Many people have a hard time taking T3 without solid adrenal function and good levels of iron. It's good to get your ducks in a row on these fronts before raising T3 or the ride can be bumpy.

It is true that many people with ME/CFS have trouble converting and most people do well to add some T3 to the mix. But poor conversion is also the body's way of turning down the metabolism and this is often for a reason - like infection or autoimmune diseases. I have found it very difficult to simply override the thyroid gland by taking T3 only without addressing any underlying causes that can be found.

Ema

 

[golden]

i have been told by my local M.E. group that dr barry petefield is an excellent pioneer in this field. he wrote a book called stop the thyroid madness and says he has excellent results with M.E. as he feels in at least some people that the initial virus damaged the thyroid and since the symptoms of M.E. and hypothyroid are similar - this goes unchecked. also there are problems with the blood tests itself - a basal temperature reading being an important diagnoatic feature.

 

[EnduringAngel]

Thanks for your answers. My private GP has said to try T3 instead of levo. Not as well as.
I do have problems with my cortisol and currently take 10mg of hydrocortisone in the morning.

At one point I went up to 125mcg of levo and my blood results were (oct 2012)
Free T3 - 5.6 pmol/l (3.1 – 6.8)
Free T4 - 16.0 pmol/l (12.0 – 22.0)
TSH-s - 0.06 mU/l (0.27 – 4.2)
But I wasn't feeling right on this so went back down to 100mcg.

I do test positive for auto immune conditions which I don't have and I have reccurent EBV viruses.

I did see dr peatfield once but wasn't at all impressed.
He wanted me to take 25mg of HC which I think is far too high. So I went with another Dr who said to stick at 10mg of hc. My friend however did go with peatfields advice, she took 25mg of hc and is now in an addisons crisis.

I really don't know a lot about thyroid and test results etc, but my ME is so severe it's making researching etc hard due to concentration/energy problems.

 

[EnduringAngel]

I thought about getting refereed to an endo, but am worried they will just stick with NHS outdated guidelines.
Does anyone know of any good NHS endos in hampshire?

 

[golden]

i dont know what an addisons crisis is but it doesnt sound good!

these stories reminds me to listen to my inner doctor first and foremost. i have heard some harrowing stories of NHS endos so cant help with this

 

[Ema]

Thanks for your answers. My private GP has said to try T3 instead of levo. Not as well as.

It's my personal opinion (after trying both T3 only and T4/T3 compounded mix) that there is inherent worth in T4 beyond just converting to the active thyroid hormone, T3. Many people on T4 only benefit from taking some additional T3 but there are very few that do well (though they do exist) on T3 alone long term.

T3 must be monitored very carefully with labs because it does not have the same built in safety mechanism as T4. It's possible (and has been posted about on this forum) to get into trouble with your heart if you are not very careful and working with a competent doctor.

Here is a great website on switching over to T3 only which describes how to start low and raise slowly.

http://thyroid-rt3.com/dosing.htm

T3 needs to be dosed at least 3-4 times a day because it does not last very long in the system in order to keep a steady state. It can never be stopped abruptly either as that can precipitate a myxedema coma.

I do have problems with my cortisol and currently take 10mg of hydrocortisone in the morning.

You might consider taking your daily average temperatures for a week or so to evaluate the stability of your adrenals. If the averages (not each individual temp) are within 0.1C, the adrenals are likely solid enough for T3 only. If not, you might need to re-evaluate your adrenal program.

At one point I went up to 125mcg of levo and my blood results were (oct 2012)
Free T3 - 5.6 pmol/l (3.1 – 6.8)
Free T4 - 16.0 pmol/l (12.0 – 22.0)
TSH-s - 0.06 mU/l (0.27 – 4.2)
But I wasn't feeling right on this so went back down to 100mcg.

Hmmm. These results actually look just about "perfect". But since it is a bad idea to treat lab results and not the person, I would be curious to know what felt off and what symptoms you were having. How long were you at that level?

What did you doctor say about those results? Without RT3 it is hard to be sure, but it looks like conversion isn't an issue for you which is somewhat unusual - but good!

I do test positive for auto immune conditions which I don't have and I have reccurent EBV viruses.

What autoimmune conditions do you test positive for that you don't have?

I did see dr peatfield once but wasn't at all impressed.
He wanted me to take 25mg of HC which I think is far too high. So I went with another Dr who said to stick at 10mg of hc. My friend however did go with peatfields advice, she took 25mg of hc and is now in an addisons crisis.

As discussed ad nauseum on another thread, the dosage of HC really depends on an individual and their test results and there is no good general recommendation. That said, 25 mg of HC is a good starting dose for those with LOW cortisol as demonstrated by testing.

An adrenal crisis is just as the name suggests - an ACUTE state of LOW cortisol. It is caused by the lack of cortisol, not by too much. And it is treated in the hospital with IV steroids and usually sugar/saline solutions. I have no idea what is going on with your friend, but it doesn't sound like an adrenal crisis as commonly defined in the medical literature by what you have written.

I really don't know a lot about thyroid and test results etc, but my ME is so severe it's making researching etc hard due to concentration/energy problems.

The RT3 website I posted above is a great resource for learning about T3 only. They have laid it out very concisely though the risks are not well discussed in my opinion.

I like the Tired Thyroid site for a look at the other side:

http://tiredthyroid.com/rt3.html

Ema