Looking for advice please. I was diagnosed with ME in November and since then been having various tests. Genova did my adrenals, morning level 4.2 and by the eve 0.8. Anyway long story short the nutritionist was costing a fortune so saw endocrinologist. He knew nothing of the adrenal support dr wilsons I was recommended to take and also said Genova can give false results!
On Monday I'm having the short synaceth end test but am worried what steroids he will suggest
Anyone got experience if this? Are my results low? What have you tried? I am completely lost in this as the docs just want yo stuff me full of pills
Thanks x
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boudy14
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Were all 4 of your results below range? If so, it's possible that steroids are the way forward. If you decide to go down that route, there's an excellent group on Facebook who can support and advise you facebook.com/groups/FTPOAdr... I'm a member and I use steroids. Also there is lots of information on dosing on the STTM website stopthethyroidmadness.com/a...
The aim with taking hydrocortisone is to take a physiological dose (not a therapeutic one) and replace in the quantities the body should be producing for itself. I currently use 20mg per day in cream form and Dr P advised me that is a safe dose to take. Even my doctor managed to say that "nothing you are taking gives me cause for concern". (My doctor knows everything I take and it is on my notes.)
Do you know your body temperature? The adrenal group recommend doing DATS - daily average temperatures. There are two sets of temps that are talked about. One is the basal temperature - which you take as soon as you wake up in the morning. The other are you DATS which you do by taking your temp 3 times a day - 3 hours after you wake up, 3 hours later and 3 hours after that. (so, for me, that's roughly 8 am, 11am and 2pm). You then add them up and divide by 3. Do this over several days and see how much the daily averages vary. That is one measure of how well your adrenals are working.
Have you had the usual other blood tests? Iron, ferritin, folate, Vit D and Vit B12? Also get your kidney function tested.
There is no such thing as ME - it just means "go away, I can't be bothered to find out what's wrong with you. It's too complicated". It is complicated and it's different for all of us. Several things may be out of balance - including your vits, minerals, sex hormones and other things. You have to start finding out what they are and start supplementing. I currently supplement for thyroid, adrenals and kidneys. My next line of investigation is neurotransmitters, for which I've just ordered a test.
Yes all four were way under range. I am having full pituitary panel Monday too. I am very unsure of steroids but I just want to get better. Do steroids make u put on weight& face balloon.?
My body temperature was ok, had that done previously
I appreciate your time but believe in such a condition as ME/cfs. All the symptoms i have and fibro are different than adrenal x
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