Oh dear, oedema.

[Hypopotamus]

Very briefly, I've not been well all my life, particularly so since around the early 1980's, and I eventually got diagnosed with ME in 1988. In 2000 after practically forcing my GP to give me another blood test, he announced that I was hypothyroid, and put me on T4. The problem then was, not only did I feel no better, but the more T4 I was given, the higher my TSH went up. After a sit-in, in the GP's surgery, I got an appointment to see an endo.

The endo put me on Liothyronine, and the pains in the joints went away, although it did little to make be feel much better. In 2007 I was successful in talking my endo into prescribing Armour, and later ERFA.

After ERFA was 'changed' it made me drowsy to take the 120 mg dose, and I cut back to 90 as a compromise. A couple of months ago the endo told me that I was hypo again (although I felt no worse) and said that he wanted me to add 50 mg of thyroxine to my daily dose of ERFA. I actually took 25 mg.

At my next appointment at the clinic, a few weeks back, I was confronted by yet another new doctor (they seem to come and go in great numbers), who, to my amazement actually seemed concerned about getting me well.

But, as part of his plan, he wanted me to take 50 mg of thyroxine. He told me the old story about the many trials that showed that thyroxine was just as effective as T3 or NDT. Anyway, I have been taking the 50 mg of thyroxine, feel no better, and now have obvious oedema. I know that it is the thyroxine because my GP prescribed 14 days supply, instead of 28 days, and I ran out last week. In the three days until I got more thyroxine, the oedema more or less disappeared.

Anyway, I have written to the doctor concerned, asking if he wants me to continue the thyroxine. It does seem that thyroxine makes me worse instead of better, and I thank God for the NDT!

On the plus side, the new doctor suggested that sleep apnoea may be part of my problem, so I purchased something called Anti Snore from Amazon, and I can say that I wake up much better each morning, and feel that I can keep going longer throughout the day.

He has also asked for my bloods to be taken at 9.00 am (which has thrown the local cottage hospital into a panic as they do all theirs at mid day). Apart from the usual thyroid tests, he will be looking at testosterone, anterior pituitary function, and cortisol. He'll either be sacked for spending too much on tests, or he will be signed up by a private clinic, but it is refreshing to meet an NHS doctor who actually seems to care.

[bluebug]

He maybe writing you up as a case study for a journal before he disappears

[Anthea55]

When you get your bloods taken, follow the usual advice on this forum, which is to stop taking thyroid meds 24 hours before the draw. On the day have nothing to eat before your bloods are taken, but you can drink water.

I was on Erfa at one stage, but changed to NatureThroid which is hypoallergenic, and found it improved some of my symptoms.

[Hypopotamus in reply to Anthea55]

Thanks Anthea66, I always stop taking any thyroid meds for at least 12 hours before having blood drawn.

May I ask how much the NatureThroid costs?

[Anthea55 in reply to Hypopotamus]

I'm sure 12 hours should be long enough.

I have a private prescription for Nature-Throid which I buy from one of the places on the ThyroidUK list. I'll pm you the details.

Have you looked into getting a different brand of thyroxine as the fillers may be a problem. See this page

thyroiduk.org.uk/tuk/treatm...

Have you also been checked for nutritional deficiencies and intolerances? My joints improved when I was tested, which led to me giving up wheat and oats.

[Hypopotamus]

I am almost wheat-free, but do eat oatcakes. And my joints are not too bad for an OAP. LOL

If they insist on me continuing taking thyroxine, I will press them to give me a different brand.