CFS Doc is listening

I had my appointment today with this Lady CFS specialist at Kidderminster hosp. Dr L, was very good and was extremely thorough.

I was with her for about an hour, she talked about CFS but examined me just about all over. I was impressed. She made me feel that someone was actually listening.

She said I had some muscle weakness but didn't know why. She looked at my Adrenal stress profile test and said she wasn't familiar with it as NHS don't do that one, but she has agreed to send me for a ACTH test at Worcester Hosp. So I am very pleased to be getting that done.

I am to have a test for celiac (I tried going GF, it didn't help) plus the useless TSH. I have got to have a stool sample done because of previously having Helicobacter many years ago.

They did my BP while I lay down and then again on standing. Of course it didn't drop when I stood up while I was there, it wouldn't would it!! This is often a problem when I have been sat for a while at home.

I still have to say I could tell she didn't really associate Hypo and the possibility of low adrenals could be my problem. She talked as if CFS as an illness in its own right and not a symptom of any underlying health problems. (I want all doctors to look at the recent Scottish parliament debate)

I agreed to meet with the CFS team and learn how to manage my pain and fatigue.( I bloody well don't want to) We have to play ball I suppose. I do "pace myself" now I have to! She said if my ACTH test showed nothing wrong and if I didn't show any improvement after meeting the CFS team, she might see me again.

On the whole I am pleased with how the appointment went.

Anyone had an ACTH test? what did it show? Is it done at an out patient clinic?

Thanks for reading.

Betty

12 Replies

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  • Hi betty, just wanted to reply (you're not far from Shrewsbury!)

    I'm glad the doc listened and is willing to do more tests.My GP also suggested I had CFS (but, for me, a co-incidence after a PT op) I don't know anything about adrenals, sorry.

    I found Vitamin D helps with my muscle weakness & pains.

    Whichever route we can go down for help must be good, and I hope you have a good result. Jane :D

  • Thanks Jane, I was taking vit D but found it gave me acid reflux, I started and stopped it a few times but always had the acid refux with it.

    Maybe the test for the Helicobactor that she has ordered might help decide if it is still active. I will try in again later x

  • Hi there,

    There are organic Vit D capsules which are very easy to swollow and do not seem to irritate the stomach so much. They are also easier to absorp through the gut wall. Send me a private message for the supplier if you wish.

    Regards

    Lin

  • Have you tried transdermal absorption for the vitamin D? Take an oil filled vit D capsule, prick with a pin, squeeze contents onto you skin and rub in. Do this on a different area of skin each time to avoid saturating one area. This method bypasses the digestive system, and may therefore not trigger your acid reflux. Might be worth a try?

  • Hi

    No I haven't tried this but it might be worth a go. I have bought some vit D just from H&B It is not giving me reflux quite as bad as the Vit D my GP gave me so I will use it before I spend any more cash! This complaint cost us doesn't it! Thanks for the tip.

  • Hi betty, will the ACTH test be the short synacthen test? Just wanted to say that if it is, a 'normal' result won't necessarily exclude adrenal insufficiency if it's caused by your pituitary gland. The SST only has 60% sensitivity for this. (A systematic review by Dorin covering 30 years of studies establishes this - you can find it in Wikipedia under short synacthen test). Better to be fore-armed! Good luck.

  • Hi

    I shall have a read of this info later, thanks x

  • Hi Betty

    I had the short synthacen test at Worcester ( have a look at my previous blogs ...was about May last year) . It was done in a day clinic... They take your blood, then a injection into your bum with the synthacen... Then 1/2 hr later another blood sample is taken to measure the response. My saliva test showed adrenal exhaustion but the SST came back as 'normal' . Both endos that I have seen have ignored the saliva test. Good luck

    Karen x

  • Hi Karen

    I did have a look at your previous blogs.

    I am convinced my problems are due to my adrenals but as you say it may not make any difference to my treatment. This is the very last time I am going NHS I have tried steroids briefly to be able to stay on my feet for a holiday, It made a big difference.

    If necessary I will treat myself like that again. (I've done nutri x and other stuff) I know its not good to be doing steroids but that's what will happen. I've read about all the pitfalls, but I want my life back. I don't want to spend my retirement in this b****y armchair! (sorry to rant)

    Thanks for the info

    Betty xx

  • Hi Betty, dont worry....it makes you rant, so bloody frustrating!! lol

    I have been on nutri ad x for what feels like a long time now...i thought they were improving but i soon discovered they werent when i tried increasing my thyroid meds...bp,pulse,temp all dropped, inner shivering etc. Im not convinced they will ever recover...i cant afford 4 nutri ad x a day forever. I would be happy to try a 'physiological' dose (rather than pharmaceutical dose) of hydrocortosone but will let Dr P decide that one! Im only 40 and definately dont want to spend the next god-knows-how-many-years on this sofa!! :) Hugs

    Karen xxx

  • Just curious, how long did you try gluten free for? I've read it can take at least 6 months of completely gluten free to feel a benefit if you do have coeliacs.

  • Hi

    I only did GF for just over three weeks, I know that isn't very long but I showed no signs of improvement at all. I do not have any irritable bowel symptoms at all in fact I am always constipated. I did have a private coeliac test about two years ago, that came back negative.

    I am sure my aches/pains/fatigue is adrenal related.

    I can understand if people do want to give GF a longer trial but it wasn't for me.

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