Hi everyone, like most I am feeling very low due to current problems and inactivity. However, I find myself sinking to rock bottom as my ailments give me a bleak outlook. I am currently awaiting a neck and back operation, since July 2019, and am told that the surgery will only prevent further deterioration and not improve things. As I am already struggling to walk and my balance is terrible this makes for a poor future. I am told that no operations are being carried out at the moment. I am finding it impossible to find out why my feet are swollen and some toes are numb. Diabetes may be the cause.
The point I would like to clarify is this:
Some time ago a Rheumatologist suggested that I have a serum cortisol test when I was currently taking 3.5mg Prednisolone. This I had done but unfortunately the test or result was lost. I am now being pressured to reduce again despite finding I feel a bit better taking 10mg. My GP insists there is no scientific evidence to back up my claim. I am currently taking 10mg, is it ok to have the test now or when my intake is lower.
Thanks for taking the time to read my query.
Written by
maxgarry
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The dose of pred you are on at present is too high to get a valid synacthen test result unless you have only been on it for a couple of weeks and could rop back to under 5mg immediately.
But what does "My GP insists there is no scientific evidence to back up my claim" mean? I want my doctor to treat the patient and their symptoms - not the lab results or a text book. Is he calling you a liar?
Thanks for your caring replies, which are much appreciated. Can I ask the question: is the synacthen test different from a serum cortisol test, and if so how does it differ. As far as my GP is concerned I made the following comment in response to his insistence that I come off steroids: "am I better to take steroids and feel an improvement in my quality of life or should I stop them and feel bad". There was no response.
A serum cortisol test is a simple blood level test, a blood sample is taken at 9am (usually as this is the time cortisol peaks in the blood) and that gives what is called a basal level.
A synacthen test is an add-on. A basal sample is taken at 9am and then an injection of synthetic ACTH is given to simulate an emergency situation where more cortisol may be required to deal with the stresss. Another blodd test is taken half an hour later and sometimes 2 hours later to see whether the adrenal glands have responded with the expected spike of cortisol.
For ordinary day to day functioning the basal level seen may well be enough to plod along but in an emergency the adrenal glands need to respond. The synacthen test shows whether they are ABLE to do so, but not whether they ARE doing so. The whole set-up is pretty complex, involving multiple organs and hormones, and all of them must be working together to get the end result - a car won't go if the tank is full but the battery is flat pr a cable detached or broken. If they can't, the result if you are suddenly put under stress may well be an adrenal crisis.
I'm glad he at least didn;t argue THAT point. The whole reason for using pred is to allow a better quality of life in the meantime. Since there is no way of knowing how long you may be waiting for the a/i disorder to burn out - not using pred may condemn the patient to years of disability and pain as well as exposing them to the long term risks of unmanaged inflammation in the body. Maybe I'm a jam today person - but I had 5 years of pain and limitation followed by 11 years of being able to function - and above all, not in constant pain.
Oh dear maxgarry. No wonder you feel so low. Do you have a Rheumatologist? If not, I feel that you need more specialist help. I see that your main question has been answered. I see that we spoke 3 years ago about blood pressure being different in each arm and what it meant. I was subsequently diagnosed with GCA and Large Vessel Vasculitis. I have been put on Tocilizumab with the aim of getting off Steroids ( still on 10 mgs). I think that my experience has been more dynamic due to the excellence of my Rheumatologist. I would wish the same for you.
Such a sad tale and my heart goes out to you. These times are so difficult for some people in situations like yours. I have no technical know how, but just to let you know there are others out here wishing they could give you a big hug and cheer you up. And I agree that the doctor you saw is totally out of order, with no bedside manner... and just lacks knowledge.
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