Anyone recommend sympathetic consultant in UK/Midlands area

HI Folks,

I hope someone will be able to advise me. I’m a 44 year old with a long history or autoimmune diseases and little support. My deafult diagnosis is ME/Chronic Fatigue wiht hypothyroidism, celiac disease and alopecia.

I don’t want to bore you all with my story but I’ve been very tired and weak for years. For the last 6 months or so I’ve noticed hyperpigmentation marks on my spine - about 5 of then about 4cms in diameter and spreading; i’ve also noticed my hysterectomy scare is getting darker and for the first time in years I look well - my usual pasty coloured face looks tanned. I also have started to fill pretty nauseous especially on moving and get very faint spells. I’m usually OK for about 30mins in the morning and then feel lousy. I have had to stop driving as I feel sick and woosy (no sure how to spell it). I have also started losing weight and gone off my food.

I have hypothyroidism and am on T3 and T4 replacement; I’m also on HRT - combined estrogen and progesterone pacthes. I suspect Addison’s but I did have ACTH test several months ago but it came back normal; though I have read that women of my age, with thyorid probs and on HRT sometimes have false negative results. Since my ACTH test the hyperpig has got worse (in fact I did not show pigmentation areas to consultant as I thought they were a passing thing!) and fatigue/weakness etc deteriorated. Nausea etc got much worse in last 10 days. I also have low testosterone (below range) and on the low side DHEA - but these all from early July so don’t know if they are accurate. My esrtrogen levels are just below normal range despite taking max dose HRT.

So, can anyone recommend a consultant who will not just fob me off with “ACTH is normal so you’re OK” or who might take a genuie overview of my hormones. I have been told I am just unlucky and to deal with it.

Apologies for the long rant…I’m sure you all appreciate that feeling!

Many thanks.

hi i have addisons fybroymyalgia along with spine problems i have just been diagnosed with late lymes and they are now re checking to see if the lymes is the couse of the other problems what im saying is you should check into lymes disease.

hope this helps in some way

paula

Mrs cosh,

What part of the country do you live in? Are you willing to travel?

No offense to the lucky ones out there who have found good endos…but I have yet to find one.=A0 Endos seem to be mainly interested in diabetes. I did finally find a good MD who now specializes in hormones.

But I really had to look hard…get on several forums…ask lots of people for advice.

If you keep digging, you will find a good doctor.

Good luck…
Amanda