Has anyone here dealt specifically with a) facial myxedema and b) normal labs so likely thyroid hormone resistance.

[suzannai]

My labs are all normal according to doctor and I have a script for both compounded dessicated aswell as T3. Doctor doesnt know how to treat, admittedly, but is open to me trying either or. I just dont know what to do....should I do them both, up the T3 from 90 mcg or begin adding NDT. I dont want the myxedema to worsen and depserately need it to get better as I am off work because of it....people keep telling me how different I look and it is getting unbearable.

[jimh111]

It would be better to stick to T3 (liothyronine). What are your symptoms other than facial swelling? One or two signs or symptoms are not enough, I note you have extreem fatigue. What was / is your pulse? You need to monitor this carefully.

[jimh111 in reply to jimh111]

I had to write this in a hurry, a bit more information. At 90 mcg L-T3 you are close to twice the normal dosage (40 - 60). As the level of thyroid hormones increase your body reduces the amount it converts from T4 to T3 and increases the amount of T3 it inactivates by converting to T2. Thus if you take levothyroxine or NDT only a small proportion will be converted to T3. This is how your body regulates cellular levels of T3 and is great if your thyroid system is healthy. IF you have thyroid homone resistance you need to get higher levels of T3 into your cells by bypassing these regulatory mechanisms. By taking L-T3 you can bypass the reduced T4 to T3 conversion mechanism. This is why I think L-T3 is better for you than NDT.

Thyroid hormone resistance requires supraphysiological doses of thyroid hormone to overcome the receptor resistance. However, it does seem that the amount of homone to trigger the receptors seems to be quite critical. A little too little and they don't trigger, a little too much and you become hyper. This isn't expressed very scientifically but what I'm saying is that these high levels of hormone require frequent monitoring.

What are the other signs and symptoms you have other than fatigue and facial swelling?

[suzannai in reply to jimh111]

Thanks for this. I am not sure if I replied or not. How high of a dose are you recommending?

[jimh111 in reply to suzannai]

The dose of T3 would depend upon your signs and symptoms and need to be carefully monitored. How have you responded to the 90 mcg you are currently taking? To be able to help we really need to know all your signs and symptoms and what your pulse was previously and is now you're taking thyroid medication. If there wasn't hormone resistance and you take these doses of T3 it could be quite dangerous. How is your doctor monitoring you? Even if they have little experience in this area they should be keeping an eye on your response, checking your pulse, listening to your heart etc.

[suzannai in reply to jimh111]

Hi Jimh, thanks for this. My main concern is extreme facial puffiness, but there is myxedema all over the body, especially on the arms aswell. Other symptoms include hair loss, dry yellow skin, constipation, fatigue, depression, excessive sleepiness, lack of motivation, loss of appetite. My BP is normal at 117/80 or so and pulse is 90 bpm which is about 5 bpm higher than normal. My GP is monitoring me every other week but just taking vitals and checking in. I don't seem to have any symptoms of overstimulation. One concern is the low iron and if the T3 will still be beneficial with the ferretin being as low as it is (23).

[jimh111 in reply to suzannai]

It does look like hypothyroidism and I'd be inclined to raise the L-T3 dose a little. My concern is that your pulse is high so I'd keep an eye on it and if it starts to rise back off your medication a little. It would be useful to know where you live (country and county or state).

[suzannai in reply to jimh111]

Hi Jim. I will look to raise the dose slightly. I have read that some go as high as 250 mcg which seems extreme. I am just wondering specifically if there are certain nutrients/deficiencies that could contribute to this. For me it all started after a stressful event...within about a month I experienced the myxdedema. I am a Canadian but am in the US/Alabama on a medical leave for the time being.

[Hidden]

I was just looking at the results you posted the other day: healthunlocked.com/thyroidu...

I have a feeling that you're not going to see great results (no matter whether you take liothyronine or NDT) until your Vitamin D comes up. And your ferritin's just as bad. Did your doctor prescribe iron and Vit D? You're going to need lots of both.

Have a read of this: thyroid.about.com/b/2010/09...

Without sufficient Vit D, the thyroid hormone can't really get working at a cellular level. Plus low Vit D is associated with high cortisol levels.

As for which replacement to take, I reckon if you were to take a straw poll of the people who post here, they'd vote for you to try NDT first. Most of us have enormous difficulties getting that here in the UK - and wish we could, without going down the self sourcing route.

[suzannai]

Thanks LilyMay.

I started with iron yesterday, my main concern of course is the constipation associated with it as that is already a huge problem. I am supplementing with 5000IU of D per day. My cortisol via blood is high but saliva is low so it seems like for some reason I am resistant at the cellular level to cortisol and thyroid hormone.

[shaws Administrator in reply to suzannai]

If you are resistant to thyroid hormone Dr Lowe would advise T3. Re bowels could you take fresh fruit in the morning for breakfast.

This is a link and read from 2nd question:-

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

[Hidden]

Vitamin C might be a good thing to take if constipation has started already (you have my heartfelt sympathy). Large doses (2-8g per day - start low and keep increasing until it does the trick) won't do any harm and has the added benefit of helping you absorb iron. Magnesium citrate can also work wonders in the toilet department.

[suzannai in reply to Hidden]

Thanks LilyMay. I will add both as I am likely already deficient in them.

[fixit]

Sorry I can't offer you any advice on NDT, but I can sympathise with the swelling. If you look at my photo you can see my lovely puffy face, together with double chin and puffy eyes. I hate my new look. Can't even wear my wedding ring as fingers are like sausages . It makes me feel very old and unattractive. Hope you get sorted soon.

[suzannai in reply to fixit]

Thanks Fixit. Oddly i havent had any gain in weight, rather a slight loss due to loss of muscle mass but my face; cheeks, nose, chin are huge. I hope something begins to work.