Diagnosis And Treatment Of Hypothalamic-Pituitary-Adrenal (Hpa) Axis Dysfunction In Patients With Chronic Fatigue Syndrome (Cfs) And Fibromyalgia (Fm)

[Zap]

ABSTRACT.

There is controversy regarding the incidence and significance of hypothalamic-pituitary-adrenal (HPA) axis dysfunction in chronic fatigue syndrome (CFS) and fibromyalgia (FM). Studies that utilize central acting stimulation tests, including corticotropin-releasing hormone (CRH), insulin stress testing (IST), d-fenfluramine, ipsapirone, interleukin-6 (IL-6) and metyrapone testing, have demonstrated that HPA axis dysfunction of central origin is present in a majority of these patients. However, ACTH stimulation tests and baseline cortisol testing lack the sensitivity to detect this central dysfunction and have resulted in controversy and confusion regarding the incidence of HPA axis dysfunction in these conditions and the appropriateness of treatment. While both CFS and FM patients are shown to have central HPA dysfunction, the dysfunction in CFS is at the pituitary-hypothalamic level while the dysfunction in FM is more related to dysfunction at the hypothalamic and supra-hypothalamic levels. Because treatment with low physiologic doses of cortisol (<15 mg) has been shown to be safe and effective and routine dynamic ACTH testing does not have adequate diagnostic sensitivity, it is reasonable to give a therapeutic trial of physiologic doses of cortisol to the majority of patients with CFS and FM, especially to those who have symptoms that are consistent with adrenal dysfunction, have low blood pressure or have baseline cortisol levels in the low or low-normal range.

KEYWORDS.

HPA axis dysfunction, hypothalamic-pituitary-adrenal

axis, chronic fatigue syndrome, fibromyalgia, CFIDS, cortisol, hydrocortisone

The article is FAR too long to print here but check out the full PDF:

http://www.cfids-cab.org/rc/Holtorf.pdf

Multiple studies using steroids to re-align the HPA axis without using so much that it causes Cushing's.

I keep finding these articles that explain how steroids may have made such an improvement in my well-being - will be interesting to see what I am told come November when my next appointment rolls around - been forwarding these to the Dr's office!

[Relax86]

I got better with HC and have consistently credited it with my near recovery

[Zap]

I keep forwarding my neurologist these articles - maybe in a few months it will make for two of us!

Did/do you have BP issues at all? In my few encounters I found that dexamethasone worked better for me (which doesn't have significant mineralcorticoid effects) - but I would suspect HC or Prednisone may help more for those that have low BP since it will boost blood volume to some degree.

[Relax86]

During the height of my flare I did have low BP issues. Usually way worse in the mornings (85/45ish). I did have 1 Doc who said that once my endocrine tests came back negative she would recommend dexamethasone for me but then she rescinded that plan. No clue why. Eventually I needed to use Midrodine which was helpful and I weaned from HC. I still on rare occasions dose the HC when symptoms begin to arise. I think it works

[Zap]

That's really interesting - now I'm curious what the reasoning was for such a recommendation and why it never came to pass. If the BP was low enough it may have needed further boosting from the Midodrine than what mineralocorticoid effects would arise from HC.

I feel that at times it would be valuable to have something that I could use as needed even if it wasn't all the time. Definitely experience bouts of symptoms.

I know that we discussed your protocol at one point in the past - the other article I found previously I was actually able to speak to the doctor that wrote it via email. He said they would use a period of a few months during which the steroids were tapered until they stopped using them all together. This was to treat SFN of an inflammatory nature that they couldn't find another underlying cause.

[RichGotsPots]

To me anyone benefiting from steroids means that their underlying cause is autoimmune related, but maybe a small chance it's adrenal related as well of course.

[Guest Alex]

Those of you who have tried steroids, have you ever found them to worsen your POTS symptoms?

[Zap]

To me anyone benefiting from steroids means that their underlying cause is autoimmune related, but maybe a small chance it's adrenal related as well of course.

I've been barking up this tree for what seems like an eternity. Nobody listens to me or says they have already run a few tests and I don't have any markers whatsoever. I still can't neglect the fact that I felt awesome - was able to get up in the morning like a normal person - did a tune up on a car without incident - stopped aching - no migraines - no crazy sweating problems or temperature sensitivity - less to no GI upset. I'm sure I'm missing something here - but don't you know that the trade-offs aren't worth it?

And yeah - that's what doctors have told me - I'm finally going to let them know that being employable and having a life are certainly worth mitigating.

Add to this for some reason I have elevated morning cortisol and ACTH. The ACTH was quite a bit elevated - on a good morning where I slept the night before and caused no stress going in for the blood draw. Dexamethasone suppression (had a decent day after it of course - functioned in the morning - etc) caused suppression of the high levels which may be why I feel better when I took it - but since it suppresses we don't have an answer to why the levels are so out of whack (since there is theoretically no ACTH or cortisol producing tumor). Endocrinology has basically said they don't have more to do.

Alex - I was given a week of Prednisone also - that caused my sweating to be worse - but unlike most of the other steroids - dexamethasone has practically no mineralocorticoid effects - so it doesn't change water retension and BP. I was also given a "baby dose" of it unlike the prednisone. So either it was too much prednisone or since my BP is always good (no drops when standing detected in numerous trials and always a normal level) that may be part of it too. Didn't have a BP cuff when I was given the prednisone so it may have elevated BP levels and had unpleasant side effects from that. I'm also sensitive to ALL meds so that may have been a part too.

That's the really sad thing is I feel like I don't need that much to feel better so that begs the question of what it is doing. Even 1 mg - 1 time per day - for the suppression test resulted in a substantial improvement of symptoms.

[RichGotsPots]

Zap there are other autoimmune steroid sparing meds out there today and new ones being developed. For example wikipedia Plaquenil, its given for most autoimmune illness like Rheumy Arthritis, Sjogren's, Lupus and many more.

Also I've said it a few times on other posts that I believe once our nerves are sufficiently damaged steroids stop working. In those cases IVIG is one alternative.

[sue1234]

Zap, I'm curious what your ACTH and cortisol levels were? I'm going by memory here, but both mine were elevated-normal into their upper ranges.

ACTH 55(10-60) (this lab is the ONLY one I've run into that their upper limit wasn't around 50-52, which would put me over)

Cortisol 23.5(5-25) (once again, other labs have around 22-23 as their upper limit)

I feel awful in the mornings, definitely NOT energized like you would think a high cortisol might make someone feel. I feel better at the end of the day, and I'm guessing things are lower by then. I just wish the numbers would go back to "normal" or go higher so they could look for the reason.

A long time ago, before POTS, I "just" had chronic fatigue. I went to a natural MD who prescribed me a small dose of Cortef(like 5 mg or under). I felt like a new person. I had originally went to him because I could not wake up in the morning anymore even though I slept the same. I would have to get my kids on their school bus then go back to sleep until 9 a.m. Then, magically I could wake up normal. Anyway, the Cortef gave me energy like I hadn't had since a young adult. I eventually weaned off of it, as I was scared of the long-term bone effects, but I would love to feel that way again.

[Relax86]

I've been using half of a 2.5mg of Midrodine in the morning and around 2.5 mgs of HC around noon to get me thru. These are very small doses that seem to prevent me from sliding right into another flare. I did have a +ANA but then other testing proved negative. I fit adrenal fatigue like a glove sometimes. I also fit some of the HPA axis dysfunction type stuff with dehydration. And additionally I lactate - apparently just for the fun of it :-)

[Guest Alex]

Relax,

ever had your prolactin levels checked?

[Relax86]

Relax,

ever had your prolactin levels checked?

Yes. elevated. The Doc went "wow you do have breast milk?!?" I felt like saying --- no this just seemed like a pretty sweet, attention getting fib that was more fun than saying I'm tachy today. Had follow up Pituitary MRI to rule out issues there - negative. So I just deal with lactation. It's way better than fainting. It's pretty amazing the symptoms I'm willing to totally live with after spending Jan 2012 bedridden and the remaining year fighting for my life again.

[Guest Alex]

Relax,

I asked because I also had elevated PRL levels in 2 separate instances, but I never had any symptoms associated with that. My pituitary MRI came back clean as well, so my dr dropped the whole issue. I'd be curios to see what a repeat blood work would show (I haven't had my levels checked since February). Have you ever been offered any treatment for this?

I'm not sure if this is something I should just drop and consider irrelevant for my health situation or try to pursue further (involve an endocrinologist and so on). I did look into the types of meds usually prescribed for elevated PRL levels and the main side effect listed is hypotension - not very helpful for someone like me .

Also, I remembered that right after I was dx-ed with POTS my dr suspected adrenal insufficiency so he prescribed HC. I took that for a month then stopped it as more of my test results became available and my adrenals checked out fine. I doubt the HC ever helped me as my HR and BP were all over the place back then.

Alex

[Relax86]

ALex My adrenals checked out fine as well. I don't know my exact numbers b/c that Doc I was working with was very difficult. He did say that I had a blood volume problem. One of main problems was associated with low BPs. The HC helped a lot for breathing issues, internal tremors, helped with my vision and light/noise/smell sensitivity. The midrodine was what helped my BP. I was resistant to midrodine and kept using salt and water but the results with the drug really made a big and positive difference for me. So I use a mix of HC and Midrodine. I was off all drugs since May of this year and last week just started dosing again as my symptoms started to peek then my BP dropped. This time I didn't wait until I jumped back on my routine, Feeling better already with this combo of drugs. Good luck to you Alex.