GP Involvement in Diagnosing Symptoms of ME that could be caused by Adrenal Problems

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Thank you all for your posts & apologies if I have not appeared courteous by responding sooner - I was incredibly poorly with a bad relapse immediately after I posted this! I am still struggling so have come online to to say a few words to communicate my appreciation.

I have just changed to a new GP who knows how determined I am to find the cause of this devastating condition.
I am going to brave attacking the adrenal problem with my GP and am grateful for all the additional information that I can draw upon for the appointment, specifically with regards to getting the tests right because it is so easy to fall down at the first hurdle by getting a result that appears to fall within the `normal' range of a test but may actually be far from normal.

Thank you again everybody..

xx
 

rlc

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Hi LitlFrog, sorry to hear about your relapse, hope everything goes great with your GP, if you can, i find printing out the articles about tests required etc and taking them to the doctors very helpful, because there writen by the experts on the conditions, the GPs can't really argue with them, alot of GPs knowledge on adrenal problems is very basic to so the least, so it helps to be prepared.

All the best
 

Francelle

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I know I have heard it many times before but I'm a bit puzzled by this adrenal insufficiency discussion as it relates to M.E/CFS.

I have had primary adrenal insufficiency since infancy and insomuch as extreme fatigue/exhaustion overlaps in both M.E. & AI, none of the other myriad symptoms (apart from postural hypotension) that I have experienced in either condition has much likeness to each other.
 

Enid

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All part of it Adrenals-best support go with. Here not much understood - too complicated as yet.
 
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I recently got my cortisol tested. In three different times, it was very low. So, I'm still waiting a few tests, but this probably means i don't have cfs.
Ive been taking prednisone for a few days and feel a bit better ( my appetite is back, less fatigued).
If you haven't yet, check your cortisol or other hormones.. cortisol defficiency has very common symptoms with cfs (notably fatigue and gi problems)
 

duncan

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How curious, @Omri. I just had my cortisol checked, and it came back high - despite me being hypothyroidal.

Glad treatment seems to be working for you.
 

slysaint

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I read a research paper(somewhere on this site or maybe the International consensus diagnostic paper, cant remember the official name, OCC? Or something) it says ME/CFS sufferers should not be treated with corticosteroids.
I have been through hell for over a year going through corticosteroid withdrawal, topical and prednisolone.
I would urge anyone using any kind of corticosteroids to really do their homework on this, not just the standard list of possible side effects. There are support forums for people suffering from topical steroid withdrawal(often exacerbated by orals), and purely orals. Prednisolone is 4-5 times stronger than hydrocortisone, and dextramethasone(I know I've spelled that wrong), is even stronger.
 

Valentijn

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I read a research paper(somewhere on this site or maybe the International consensus diagnostic paper, cant remember the official name, OCC? Or something) it says ME/CFS sufferers should not be treated with corticosteroids.
Research has shown that low-dose hydrocortisone is beneficial for ME patients. But it was carried out by psychobabblers, so the conclusion was that it still shouldn't be used.
 
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I read a research paper(somewhere on this site or maybe the International consensus diagnostic paper, cant remember the official name, OCC? Or something) it says ME/CFS sufferers should not be treated with corticosteroids.
I have been through hell for over a year going through corticosteroid withdrawal, topical and prednisolone.
I would urge anyone using any kind of corticosteroids to really do their homework on this, not just the standard list of possible side effects. There are support forums for people suffering from topical steroid withdrawal(often exacerbated by orals), and purely orals. Prednisolone is 4-5 times stronger than hydrocortisone, and dextramethasone(I know I've spelled that wrong), is even stronger.
Well,of course you shouldn't it use it without good reason. I'm using it because I had blood tests where my cortisol was very low and was eventually diagnosed with secondary adrenal insufficiency.
 

slysaint

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Didn't mean to criticise anyone, I know some people have little choice in the matter(I know someone with Addison's who has to take hydrocortisone every day to stay alive).
Just don't want anyone to unnecessarily go through what I have from inappropriate treatment with corticosteroids. If i knew how to prevent people from getting ME I would equally feel the need to warn them.
Unfortunately a lot of doctors go for the quick fix approach with antibiotics,steroids and anti-depressants without giving the patient any alternative. .....but that's another story.
 
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i just want to commnt on the flip side of AI. I was on a low dose of corticosteroids for a couple of years for lung problems whil i was in a long M.E remmission. In fact what happened to me waqs that the steroids i was on - a this point just high dose inhaled steroids - had wrecked my health completely and cause a massive M.E relapse.
I would urge anyone thinking of steroid therapy to be extremely cautious. Most meds have side effects that can be crippling. It completely messed up my HPA axis, and my doctors didnt believ it was possible until they saw how my symptoms reducved once i self reduced the medication.
I had horrendous menopausal symptoms (i wasnt menopausal, but was misdiagnosed as such) i also had all the symptoms of severe adrenal insufficiency.
3 or 4 days after i started reducing the dose all my menopausal symptoms cleared up, and have stayed that way to this day. I still have M.E, but i am much better than i was before. They also seriously suppressed my immune system until i was having continous infections for obver 2 years with no relief. Now i am on a low dose and i no longer have to stay at home for fear of catching something.
I also had a nightmare reaction to antidepressants that also helped to destroy my life. I only do natural now and it is working for me. I would urge anyone to think very seriously before taking any medications.
Hi. Noticed you mentioning awful menopuasal symptoms. My menopuase was ten years ago yet i am having appauling hot flushes sweats disturbed sleep pattern etc. did anything help these particualr symptoms for yiu? I too was give. Steroids which made everything worse.
 

justy

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Hi. Noticed you mentioning awful menopuasal symptoms. My menopuase was ten years ago yet i am having appauling hot flushes sweats disturbed sleep pattern etc. did anything help these particualr symptoms for yiu? I too was give. Steroids which made everything worse.
Mine wS not a true memo but caused by the steroids. Once they reduced the symptoms also improved. Agnus castex is good for these symptoms.
 
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I tried alternative medicine right after western medicine decided there was nothing wrong with me. I saw a doctor in my area that claimed to have cured people of their chronic fatigue. Perhaps he had some success, but his choice of supplements and homeopathic medicines only made me worse. He was selling Thorne Research products, so at least the supplements were legit. He took the approach of treating a possible candida infection (Formula SF722 250mg) and possible adrenal insufficiency (Adrenal Cortex 50mg).

Should a doctor even try to prescribe bits of bovine adrenal glad before he even tests for adrenal issues? I think it was a bad idea, and probably was the reason I started feeling worse. I have never revisited the adrenal angle after that, finally ending up at Stanford's cfs clinic years later.
 

tinacarroll27

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I have had my cortisol levels tested and they came back normal so Dr Myhill said she didn't think I had adrenal problems. Although my DHEA was very high for my age, which seemed to think was genetic. My ME is now worse but my cortisol levels are still normal. I had bad POTs in the beginning and I managed to improve it with probiotics. So I think the gut plays a big role in my ME. I also have high EBV and I am going to get tested for Lyme because I have a lot of joint pain and swelling, as well as muscle stiffness. I think it is worth getting your cortisol tested though because it may play a role in your fatigue and I am glad I had it done. You can get the test privately but I think it has to be done over 24 hours.