Dhea

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I would be interested in hearing from those who have had documented moderate to severely low DHEA levels and subsequent response to supplementation. If it was helpful, specifically in what way did it help, e.g. improved fatigue, memory, etc.?

I am currently reading an interesting book, "On Hope and Healing" by Neil Nathan, MD. It deals with chronic illness in general. It certainly addresses CFS but is not specifically about CFS. He discusses various things to look at such as magnesium deficiency, thyroid, methylation cycle, etc., but the first thing he discusses is DHEA. He goes so far to say that if he could only utilize one lab test and treatment for patients with chronic illness, his choice would be DHEA. He explains normal levels, how they correspond to age, etc.

My son has CFS with POTS/NMH to a disabling degree. As I was reading this chapter, I remembered that at one point someone had ordered an adrenal steroid profile. When I pulled it out I was astounded by the DHEA level as in light of the information provided in this chapter his DHEA was astonishingly low at that point, not even 10% of where it should be. I am definitely going to see if we can have this checked again and see what it is currently. If it is anywhere close to that, I would think that supplementation would almost certainly have to be of at least some benefit. I have been searching on the Net meanwhile and have also learned of some adverse reactions in some patients. It seems that these sometimes occur after an initial positive reaction. I am very curious to hear of personal experiences here. It would also be helpful to know the degree of deficiency before starting supplementation as I suspect that perhaps the reaction, positive or negative, possibly partially depends on the degree of deficiency to begin with and perhaps getting the level too high during supplementation if it is not monitored.

Thanks so much for sharing.
 

August59

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I have always been very low since I came down with CFS. DHEA worked pretty good initially, but ultimately pushed my Estradiol to high. DHEA I think can only convert to testosterone or estrogen.

With my adrenals being burnt out I needed cortisol and aldosterone plus the testosterone. Pregnenolone worked better for me due to it can be converted to Progesterone (then aldosterone), DHEA and Cortisol.

Adequate thyroid is needed for some of these conversions to take place and cortisol is required to carry thyroid into the cells. With myself, it comes down to getting frequent labs and adjusting to keep balanced.

If I can get my estradiol under control I will probably add some DHEA back into the mix. DHEA comes from the adrenals and they are commonly insufficient. My thoughts are the chronic inflammation ultimately burns the adrenals out.

DHEA helped me on several symptoms (as pregnenolone has). If POTS/OH is present I would think aldosterone might be abnormal and it is a product of the adrenals and exerts its effects on the kidneys which produces vasopressin.

As with most PWC's if you do decide to try it, start slow and be very cognitive of any changes.
 

Sallysblooms

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I get my hormones and many things tested twice a year to make sure I am progressing. I was taking DHEA and my level is fine now. I take several hormones from a compounding pharmacist. Hormones at the right level are very important for so many reasons. My doctors have given me a schedule of the right hormones and supplements with the right doses for me, correct brands etc. I don't just take them on my own.
 

Dreambirdie

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Hi cherlyn--

I have experimented with DHEA and have had mixed results with it. Back in '96 when I was first tested, I had DHEA levels of an 80 year old (and I was only in my late 30s). I tried DHEA, but I found that I could not tolerate regular DHEA very well at all, even in tiny doses of 1-2 mg. It seemed to be having a nasty estrogenic effect on me---as it can sometimes convert to other hormones. I WAS able to take 7 Keto DHEA (which cannot convert into other hormones) at up to 50 mg/day. Initially it seemed t be helpful. But after a few years it didn't seem to be noticeable any more. I still take it sometimes, but not as much as my levels are more normal now... Wish my energy was too!
 

August59

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Sallysblooms - Do you mind if I ask what compounding pharmacy that you use? I anticipate needing one soon and I'm having a hard time finding one that does the hormones, other than progesterone, testosterone and estrogen.
 

heapsreal

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dhea in men for some reason just increases estrogen(e2) too high which is my experience, pregnenolone helped increase my dhea and testosterone levels etc but it eventually just worsened my insomnia and made me agitated which is a shame because at first i felt great on pregnenolone, i will try the pregnenolone again. My dhea levels are below range and cortisol is low normal. ANy men out there used progesterone in low doses, i have heard this helps adrenal fatigue and low cortisol and has a calming effect??

cheers!!!
 

CBS

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I've had mixed results with DHEA - very low levels. Also have very low testosterone levels. Mixed results with testosterone replacement as well.

Given the studies suggesting that androgens can stimulate XMRV replication, I've given both testoerone and DHEA replacement a rest.
 
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I appreciate the replies and hope others will continue to chime in. For sure if we try this I would do it with the supervision of a health professional - provided I can find one who is open to such experimentation. However, I'm also not hearing anything here yet that makes me want to rush to try it. The response here is in line with what I found with some Google searches, etc. Interestingly, those sides of it are not brought out in the book, though I may have missed it in my excitement of potentially finding something that could be of significant benefit. It's always nice to hope! :)

Clearly DHEA is often low in those with chronic illness and other hormones and neurotramsitters are often out of whack as well. Wish we could know if the condition(s) cause that or if the condition(s) are partly or wholly the result of such.
 
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August, aldosterone at that time was low or at best low normal. It's hard to know for sure because I can't remember what his salt intake was when he did this test. The most debilitating issues for him are fatigue and orthostatic intolerance, so definitely aldosterone is something to look at. However, he cannot tolerate Florinef or midodrine so I'm not sure there's much more we can do from that perspective. I was hoping that since DHEA seems to be drastically low that perhaps supplementing that would perhaps be of some benefit with the fatigue. It would be wonderful to give him some relief, any relief, with even just one issue.
 
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I've had some success with DHEA in sublingual spray form but it's not a cure-all for me. I had tested quite low (can't remember how low but it was significant) so decided to give it a go. I started off with 7-Keto but that had no appreciable effect.

I understand that inadequate copper in the diet can reduce DHEA levels significantly, at least in rats. Low copper can also reduce (among other things) the enzyme that breaks down histamine. I think this is relevant in CFS particularly because excess histamine can cause stomach disorders through excess stomach acid, sleep disorders, inflammation issues, allergy symptoms. Sound familiar to anyone?

I know some people believe they have too much copper, and they may be correct, but things like hair strand tests don't seem to be particularly good markers of actual copper status - it would be far better to test the levels of copper enzymes or serum copper.

Supplementing zinc without copper will reduce copper levels, as will the use of chelating agents like vitamin C. Since copper is important, no, vital to normal body function it might be worth looking to see whether deficiency is possible first. Asking the question "where am I getting my copper from?" is what I did. I now take copper as a supplement and it's had a positive effect on my health - apparently even turning some of my prematurely white hairs back to brown midgrowth. Copper is vital for many bodily functions including vascular health and the collagen cycle (tendons, ligaments, skin) too.

Hope that helps.
 

cigana

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Dr Barry Durrant Peatfield in his book Your Thyroid and How to Keep it Healthy believes that low DHEA and Cortisol (i.e. Adrenal Fatigue) are oftent he result of unduagnosed hypothyroidism. The reason being that thyroid hormones tell your body at what rate to work, and when thyroid levels are low, so the adrenal gland output is low and hence your other hormones are low.

It is worth checking your basal temperature, first hing on waking. If it is below 36.5 Celsius, hypothyroidism is a very likely reason. Note that hypothyroidism as caused by receptor resistance would not show up on any blood tests.
 

meandthecat

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DHEA has been the single most effective treatment that I have found; over 2yrs it has supported my return to about 85% of pre-illness function.

I am a guy in my late 50's, was very fit, now a little tubby, perhaps with a bit of insulin resistance.

Living in the UK, I might as well be in the depths of the Amazon as regards healthcare, with GP's taking the role of hostile tribes. I am not able to follow my progress through testing, so I have to judge by results. I cannot gauge any possible future problems.

I am up to 125mg per day now having built up from 12mg over the 2yrs. Every now and then I back off just to see and each time life gets harder.

Recently I began with SAM-e and sublingual B12 and have reached places in my head denied me for so long. The elevator just gained a floor!

I also use alpha lipoic acid, saw palmetto, milk thistle and cymbalta{ to combat pain}

I can work full time and get out at the weekend and feel that for the first time in 6 yrs I have a life.

I don't know where it will lead but the memory of the bad days I thought would never end is fading. I don't even think about 'cured'; just value each day without pain.

I guess we each find our own way but without this site I wouldn't have found mine.

This is a huge thank you to cort and all of you who make this possible.
 

cigana

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Hi mendthecat,

That is a great story, thanks for posting.

Did you ever try taking an Adrenal Saliva test to check your DHEA ? Mine was well below the reference range and I'm supplementing on 25mg daily, but now that you have mentioned you're on more, I am considering upping the dose. I am in the UK too and will consult with Dr Peatfield on this.

Best wishes,

Mark
 

meandthecat

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Hi Mark I didn't test my DHEA levels, it was all suck it and see. To be honest I was so bad that anything was worth a try. I was concerned about using DHEA and possible prostate cancer issues which is why I take saw palmetto to prevent conversion to DHT which seems to be the problem.

I built up the levels slowly and in the early days any rise left me feeling wobbly. As I grew stronger it was less so. One day I used 50mg tabs instead 25's and carried on for a week without realising. I felt amazing and didn't know why till I looked more closely at the bottle. So I carried on at 125mg instead of 75mg. I haven't needed to increase from this though I have read of far higher doses being used.

I consulted an endocrinologist and he seemed bemused, GP's washed their hands of me so I trusted to my own research and intuition and didn't look back. Oddly it doesn't seem to have changed my testosterone levels which are monitored due to high PSA.

Hope this helps ed
 

cigana

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Hi ed,

That is definitely helpful thanks. It's always interesting to hear when people notice big improvements when they change a dose of something. By the way just a thought but if you are using the 7-Keto version of DHEA I don't think that can convert to testosterone (which might be why yours is not increasing) but you probably already know that!

Cheers,

Mark
 

heapsreal

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Hi Mark I didn't test my DHEA levels, it was all suck it and see. To be honest I was so bad that anything was worth a try. I was concerned about using DHEA and possible prostate cancer issues which is why I take saw palmetto to prevent conversion to DHT which seems to be the problem.

I built up the levels slowly and in the early days any rise left me feeling wobbly. As I grew stronger it was less so. One day I used 50mg tabs instead 25's and carried on for a week without realising. I felt amazing and didn't know why till I looked more closely at the bottle. So I carried on at 125mg instead of 75mg. I haven't needed to increase from this though I have read of far higher doses being used.

I consulted an endocrinologist and he seemed bemused, GP's washed their hands of me so I trusted to my own research and intuition and didn't look back. Oddly it doesn't seem to have changed my testosterone levels which are monitored due to high PSA.

Hope this helps ed
Alot of studies are finding that dht isnt the issue with prostate cancer etc but estrogen specifically E2 which can enlarge the prostate and cause cancer. Dht isnt the bad boy as its main effects are to help with sex drive and erectile dysfunction. Men who have used regaine for hair loss which works by blocking dht, some have had erectile problems (although a lovely head of hair)after using this treatment, so i wouldnt using anything stronger then saw palmetto. Also a common finding in alot of men who use dhea is that it has minimal effect on testosterone and seems to drive up E2 levels, so getting hormone tests are important because we dont really know how dhea will react in most men, for some it increases testosterone but many it just bumps up E2. There are ways to get around these E2 issue but you are going to need a switched on doc, a drug called arimidex can block testosterone from converting/aromatising to estrogen and can increase your testosterone levels, small doses twice a week is all that is needed for this as driving estrogen to low can also cause alot of problems in men, another reason to get tested, its a juggling act and the hardest part is finding a doc who understands it all. Heres a link, its a bodybuilding site but this particular forum discusses hormone replacement therapy in men and sorting out estrogen etc etc as well as using dhea, testosterone etc http://tnation.t-nation.com/free_on...2D928E1D2-mcd01.hydra?pageNo=1&s=forumsNavTop

In australia dhea is a prescription item only, the reasons are so people dont take it haphazardly, monitoring blood levels are important.

cheers!!!