Advice please! As I have frequently moaned about here, the last 3 years have resulted in a steadily increasing disability for me, especially with regards to fatigue and effort intolerance. I'm now at the point where I am more or less housebound and spend most of the day in my armchair.
Neither my rheumy nor endo can suggest any solution - or even treatment. So last week, in desperation, I tried a home test for selected hormone levels. The results are normal, except for DHEA sulphate, which is well under range at 0.4 (normal range is 1.4 - 8.1). This is accounted for by my adrenal insufficiency (the adrenals are responsible for producing DHEA). I'm on 8mg pred atm.
My question now is whether to start taking DHEA supplements. No doctor has raised it as a thing worth considering and the research evidence seems weak. However, I have literally no other ideas on how to improve my situation. Thoughts?
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Have you tried taking vit D? Have they checked B12. I'm sure they would have ruled out b12 but I read that many people can feel very ill with symptoms but Dr's do not raise it as an issue or treat it if it's borderline. There are strict limits apparently. However, some people have paid privately for injections when they've been borderline and have seen a vast improvement. Just a thought.
I’m with suzanna on this, old chap. You have so many other bases covered and the medics are scratching their heads. Personally, I’d go for it. It isn’t snake oil. Sorry you’re so laid up xxx
Some members on this forum may disagree with some of my postings but my search for answers came at a similar juncture to yours. Albeit maybe I had not regressed as far as you.
I can't answer for DHEA Sulphate myself as have never researched it personally. But I have found benefits from following health advice of many functional doctors online. Only advice I can give is read and then read a bit more as without the support of your allopathic team you will be taking a certain amount of responsibility for possible outcomes on yourself.
Keeping notes is a good idea and not changing too many things at one time. Try to be fully aware of what effects good or bad are expected. Stop if things don't appear to be going right.
But I feel food and vitamins are a vastly underappreciated part of all of our healthcare regimes. If you try to fuel a car with less than the fuel it requires it won't perform very well.
I don't believe our illnesses are due to deficiencies of some pharmaceutical preparation so I find it amazing that they seem to be the primary or only tools of allopathic medicine.
Thanks, there's no doubt in my mind that meds are always a blunt tool = a sledgehammer to crack a nut. The trouble is we are attempting to intervene in systems that we still have only a rudimentary undersanding of. At t his point, it looks like I have to do some more experiments on myself x
But although it is a different disease Dr Terry Wahls (allopathic doctor), who has MS was told by her leading allopathic doctors they could do no more for her. She then decided that it was her choice whether to accept that as her fate or start researching in other areas. She managed to turn her disease around and has since retrained in the functional medical field. Many doctor practioners in functional medicine have similar stories.
The information on the website may (or may not) help with your experiments.
👍
Note to Admin - hope I'm not infringing forum guidelines by posting this link. Not spam or advertising - signposting a source for information / reference purposes.
thanks - i did spot this one and plan to take a good look at it. Its obviously quite positive about the possible benefits, which is encouraging, but I'm not yet convinced how robust the claims are. x
Lots knocking about on google scholar...some appear to support DHEA for those with adrenal-insufficiency, some don't...and some suggest no effect as a 'general' supplement for those without underlying conditions (the supplementing well).
And it's not always easy placing the findings of research papers in a wider interpretive framework...but that's another story 🤷♀️.
Bit of a mixed bag...so hmmm...
Good luck. Be interest to hear if you take it and how you get on.
I would definitely look into other things and I would be wary of the "normals" we are given by NHS for various vitamins auch as B12.
My levels were low 200s but only just normal. According to the now retired head of the old Glasgow homeopathic hispital ,whom I used to see under NHS, they were drastically low and he wanted me at at least 600. He was a greatly respected physician by all main stream hospital doctors too.
I had B12 injections for a while but reacted badly to possibly the fillers in them. I now use the under tongue spray or patches.
Anyway I have a friend whose B12 was 349 but she felt dreadful..GP naturally said everything normal and fine! She insisted in seeing a neurologist who said the same, till she told him all her family had died of strokes and had pernicious anaemia.
He immediately changed tack and wrote to her GP asking for B12 injections tegularily. Despite her "normal" levels she has dramatically improved , sometimes our levels do not accurately reflect what is going on in our bodies.
It is finding the culprit though. It might be B12 but maybe not.
I totally inderstand you wanting to try to research for yourself ,as what have you to lose when they have little to suggest.
I so feel for your situation and the frustration of there being so little to help.
Steroids are a mixed blessing, but for us with adrenal insufficiency essential too. I hate them but would have no life at all without them.
My Rheumy is now wondering if they have caused my recent stroke, there are curved balls arriving to catch us everywhere!!
Would it be possible to find someone of medical repute who could help you discover a bit more about the DHEA?
I so hope you find something soon to give you some relief and hope.
thanks for your thoughtful remarks and kind words cutty. i should be seeing my rheumy in a month or so and think i will email him with my thoughts prior to that review. Meanwhile, I've got to say I am all googled out with the amount of research I've been doing. As you say, when we encounter these sticking points, we need a clinician who has a commitment to going that extra mile to help us through. Not sure that mine is that man...x
'sometimes our levels do not accurately reflect what is going on in our bodies.' You are so right there , I was maintained for years on 200mgs thyroxine , over which my blood would indicate as my then Gp realised I needed that amount to function, even the Thyroid Register accepted this for years. Then it became my surgery's responsibilty for checking levels and my new GP then has reduced it twice , now getting 150 mgs daily and just not enough!! Its so frustrating. We know our own bodies !!
Ah! I've been wondering if you did the hormone testing.
It's clear you're fighting this with all you have. You sure have some excellent chutzpa! I know that was an expense and must have been a real a let-down to not have straightforward low testosterone, which does have an immediate treatment. However, I can't help thinking, along the lines that cuttysark just said, about finding someone of medical repute to help find out more about DHEA (and how all the hormones interact and how they are affected by certain medications). If you would like it, I will happily private message you my menopause specialist's email and phone contact. She does phone consultations. And she knows all about this stuff. She straightened me out with my on-the-floor testosterone levels. All of the hormones affect each other, so you really could do with someone jumping in for you who has a grasp of that whole.
My consultant is private now, so I assume that means you can access her? Let me know if you want me to pass on her details. She is brilliant and has lots of male patients.
Thanks Panda, Yes it was your suggestion! Could you PM me your consultant's contact details. I'll need to look at as many options as possible and recommendations are very welcome x
I'm so sorry Whusperit your suffering so much. I agree with a lot of your correspindence's that you have nothing to lose in researching DHEA supplements and trying them!. I personally don't have any experience of them so can't comment but just want to wish you well!. Keep us posted how you get on and what you do. I'm owl watching as joined the BTO survey. Many thanks for it. Take careX
Your not to us in forum Whisperit!. It's good though they want to know no hoots as well!. Your not having a lot of luck what with your hedgie too!. Our owl may have suddenly gone silent since I signed up!. Sod's law and all that!. Think how patient wildlife cameramen have to be to get the all important shot!. All the best for DHEA and your Rheumy appt. X
I too have bought DHEA to see if it helped with the fatigue , have not taken it as yet but am seriously considering it . Nothing ventured , nothing gained ! x
2. Long answer, there has been a lot of research on dhea and some people find it very helpful. Please search for dhea and lupus and note the therapeutic dosage and frequency.
I have been taking it many years ago and it didn't help, but seeing that you are actually low on dhea makes me think you are ideal candidate for this supplement to work. When i took it i had side effects so look for those too. I had terrible acne on my back, but they eventually disappeared. More importantly i had a horrible increase in GERD symptoms and didn't figure it out that it was because of dhea for several month as the symptoms came on gradually. i already had gerd so if you dont already have it maybe you will not get this side effect?
When and if you decide to stop, because this is a hormone the best practice is to stop it gradually. I stopped it abruptly and nothing bad happened but when i told my rheumatologist he said i should have dobe it gradually.
Lastly, im surprised and concerned that your rheumatologist doesn't know about this supplement. My rheumatologist recommended it to me years ago...
Thanks miccika1, that's interesting. If you can recommend any particular resarch or review paper that would be great, but dont worry if not, I'm a dab hand at google these days. My main constraint is just not having the energy to plough through pages of guff to find th gold nugget
Unfortunately, I do have GERD but won't let that deter me.
Interested that your rheumy suggested DHEA. Does this mean you are not based in the UK!? x
Bollux. Ten seconds of googling produces the Johns Hopkins Lupus Centre page. First category under "Who should avoid taking DHEA" is "Men". I'll keep looking but that is a pretty heavy blow x
Oh i wasn't aware about the gebder restriction and that youbare a man. That sucks. Still if you are low on this hormone wouldn't this make sense for you to supplement? Im based in the usa. There is not equivalent forum for usa so i use this site 😀. How did u guess?
Hi whisperit. I tried a very low dose of DHEA about 8 years ago. It helped me quite a bit but I was reluctant to up my dose, as there wasn't a huge amount about then re safe levels of DHEA use by women. This was before everything deteriorated, I had major surgery and then received my diagnoses of Lupus, Hughes Syndrome (APS), a genetic disorder, and other things. I have wondered whether to take it again but haven't got round to doing the research; one health issue after another keeps popping up and taking up my energies.
You might, if you haven't already looked there, want to search the Health Rising and Phoenix Rising websites. These are for those with CFS/M.E. but also Fibro and related stuff. There can be some great and informative articles and discussions there, which may help your thinking over this issue.
In terms of the link to Dr Myhill, I was a phone patient of hers, years ago - when my diagnosis was still M.E. She a good woman but her website was hugely changed after the GMC repeatedly tried to strike her off following complaints (not from patients; it's a long story but you can Google it). So her website is now of only limited use - it used to set out her full and unadulterated thinking on so many matters.
It's so helpful to hear your experiences, even if they may not be entirely conclusive. I kinow exactly what you mean about running out of energy for researching - after 2 years of intensive literature searches, I am now burnt out and would rather someone just told me what to do! Sounds like you have a lot to deal with there; hope you are managing x
Have just read some of Christophene47's response. I should say that I very briefly mentioned DHEA to my rheumy, not long after I was diagnosed. He said he couldn't recommend - for the same reason as the gynae cited below: there isn't enough evidence as to what they do, side effects, etc. So his preference was for me to not go back to them i.e. to err on the side of caution. However, mine is a complex case, and that I think was what was making him wary. Of course, I doubt there are many 'textbook' Lupus patients out there - all nice and straightforward, without other complications, etc! If you are going to dip your toe into the DHEA waters, buy a decent brand and start off with a low dose and see how it goes.
Yes, it's fair enough to advise against on the basis that not enough evidence of effectiveness. But as I say, that becomes less persuasive if you are not improving and your rheumy has run out of other suggestions...x
DHEA supplements are controversial. I asked my GYN about it, and her response was"HATE THEM" because we don't really know what they do."
I am very sorry you are feeling so poorly. DHEA is supposed to convert to estrogen and progesterone, but there is insignificant research to prove this, and in some cases, it can cause harm. As we age, DHEA, normally drops as part of the aging process so that your values are low would be normal.
You might want to talk to your GYN about bioidentical hormone replacement; estradiol, testosterone, and if you still have a uterus, progesterone.
I felt like you did a few years ago. I felt like the problem was physiological. I was lucky to find a local gynecologist who strongly advocated it. The first thing they did was sent me was a slip for blood work of those hormones + thyroid stimulating hormone. So by the first appt., she said, "poor thing, you have 0 estrogen and 0 testosterone, no wonder you feel terrible."
Even post menopausal women continue to make small amounts. I was passed menopause, probably 65. At 71, I still go every 3-4 months for the treatment.They are natural to the body, and do not come from horse urine as older versions. I believe they are plant based.
The pellets are inserted under the skin in the upper outer buttock with local anesthesia.
About a week after the first treatment, I noticed a little return of a sense of well being. Unfortunately, here in the US, they are not covered by insurance; they protect bone and muscle strength, help with brain fog. Even if you are not sexually active, they have many health benefits.
My doctor requires a pelvic exam one time before starting treatment and an annual mammogram.. There is a cream type prescription which you rub on your inner wrist, but they only last 24 hours.
Here it costs $300 a treatment; I only go 3-4 times a year so annual cost is $900-1200 per year, well worth it.
I don't know how UK doctors think about this; it is recommended for women on steroids also because it is bone protective.
But do look into it if it is available in UK. Whether or not, you try DHEA is a personal choice of course.
Best of luck to you, and I hope you feel better soon. Don't give up.
Thanks for all those details. My testosterone and other sex and thyroid hormones are all normal. It's just the DHEA that is low. Presumably my adrenal insufficiency means my adrenals are no longer secreting DHEA, and its just coming from the brain and gut (I think those are the other sites of production). I'm aware I am clutching at straws here, but none of my clinicians is offering even one idea on how to recover from being a housebound invalid
Mike I have little or nothing to contribute here because I’m not housebound usually and don’t know anything about DHEA. The only thing I have noticed is that I can become the same way as you if GPs reduce my Levothyroxine.
When I was undiagnosed and had relocated here I sought out the input of a private endocrinologist - retired from NHS work but still going strong. He looked at my blood work and claimed other stuff was definitely going on - thought Lupus but acknowledged that he was well out of his depth with rheumatology.
As my free T4 and 3 were low in range he felt I was having trouble converting Levothyroxine to where it was needed. So he put me on Lyrothyronine/ T3. After 6 weeks he also lowered my Levothyroxine and I think that was around the time I started to feel like you describe - also when I was rediagnosed with Sjögren’s.
Meanwhile my GP practice we’re having a blue fit over the T3 - presumably because it’s horrendously dear - and I was having terrible palpitations - so they referred me to an NHS endo. When I finally saw him he rolled his eyes, explained that my Hashimoto’s was probably secondary to my Sjögren’s and that the Sjögren’s has destroyed my thyroid over the years. So he took me off the T3 and raised my dose of Levo right back up to where it had been when I was back on my island home, 125mcg.
Within a week a could walk the dogs again and my hands were no longer seizing up.
He saw me once more and wrote to my GPs saying my Levo dosage had to be enough to keep my TSH at 0.1. Of course they are apt to forget this and tell me I’m suppressed even thought it’s always at higher levels. I won’t self medicate by upping my dose because the palpitations return. But I do point out that if they don’t want my RA symptoms to return or to render me a pestering blob of inactivity then they need to heed the 0.1 guidance. Of course they don’t but at least they have the grace to look a bit startled!
This ramble isn’t relevant to you apart from the bit that says there is a great difference between what GPs and our other doctors say about “in range” and the reality for most of us. The posh endo I saw privately told me that he had come to regret the guidelines he had been responsible for and felt hoisted by his own placard.
I too have cognitive issues over reading stuff these days which I do feel is because my Levo is suboptimal - due presently to interference of Carbamazapine - which I’m on for facial pain.
I asked a gp about this as it’s written on the blurb and she agreed that we should monitor it and go by my symptoms not by my TSH level. She won’t - they never do because they fear tipping patients into Graves. Now I am sure I’m so far off Graves it’s a joke but I feel I will have to keep being my own advocate as so many of us do. I will have to take myself slowly off the Carbamazapine as I always planned because I’m gaining weight and I hopefully won’t need it once my dental work is all done.
We know what we know and we give masses of time to learning via google and forums like this - because something has gotta give hasn’t it?
My lovely ENT guy seems to have discharged me now but he said something about my small vessel disease (damage done by Sjögren’s) as cause for my poor spatial awareness so I’m blaming this. Have you had brain MRI recently?
If you’re housebound with fatigue and lethargy then it is inevitable that your vitamins and minerals will be extra out of whack as well as your physical frame. You will therefore do anything you can to improve things for yourself and this seems the only rational and intelligent to proceed to me. X
I have the same question and tried DHEA supplements..my symptoms literally almost disappear with it ..however it gives me terrible Acne ..so I keep stopping it
Thats interesting, doony. I'm particularly concerned about the possible cardio side effects - rasied BP and heart rate. Do you get any of that? What dose do you take? x
Jumping on here. I've had no side effects from DHEA at all. It affects people differently (and obviously you've had your levels checked and you know they are low).
You need to check with your doctor I have a mild case of Lupus and no organ involvement so I am not really risky I take 25 mg and found it best taken every other day ..it is still a potent supplement.Acne...you need to check with your doctor but I had same blood tests results as you when I first tested it was .4 as well and it was difficult to raise it.
The supplement quality also plays a big role I tried two brands ..one I was comfortable with at 50 mg no acne for first 2 months then I ran out of and changed to what was supposed to be a better brand at 25 mg and it was too potent gave me acne and insomnia, almost within a few days and I could not continue taking it, so now I only take it to put down a flare for a duration of two weeks 25 mg every other day then stop it again. I also hate the facial hair.
I wish there was a doctor where I live that is willing to manage my treatment with DHEA but it is almost impossible.
The issue is doctors are not giving it enough attention or would dismiss it all together..but there must be a connection but as we all know not enough data about Lupus.
I hope this helps ..just find a doctor who believes in DHEA role in Lupus and have him monitor you.
Ask your physician if you can take CoQ10 (ubiquinol). It is necessary for the cells to produce ATP (the energy within the cells). When the cells properly produce energy, the body becomes energized and helps fight off fatigue.
You're welcome! I know several people (myself included) who had positive results with it. And, their doctors had no problem with it. Just be sure to ask your doctor. Prayers! 🙏
Another reply from me! I have been taking CoQ10/ubiquinone for years and it has really helped. I think I would be almost housebound with it, plus a couple of other things I take. As I don't think we can recommend places to buy very economically on the forum, I shan't say where I buy mine; but do feel free to PM me if you would like any further info.
I take DHEA as a supplement - very low amounts...so I started at 25mg and am now on 10mg daily. Have you checked your other hormones too, like testosterone etc.? It did give me an energy kick.
I was willing to try anything (as like you I have adrenal issues too as we've discussed before). And actually, fingers crossed I'm feeling ok at the moment. I'm still on the lupus meds, slowly, slowly lowering the pred dose to see how far I can go (and at some point I will start to mix with hc), and am taking pregnenolone, progestrone (amazing for sleep), LDN, and melatonin (1-5 to 2mg at night).
I can put you in touch with my functional doc if you like because she prescribes bioidentical hormones. She wants me to take small amounts of estrogen and testosterone too. x
Thanks TT, That's useful info. The other hormones tested [FSH, Luteinising, Testosterone, Oestrodiol, Prolactin] are all within normal levels. So I need to try and understand exactly what the implications of low DHEA might be in the absence of other abnormalities. My main caution is re BP and heartrate as both of these are too high for comfort atm. l may PM you as I get more questions if that's OK.x
Yes do. I get palpitations (in general because of the Lupus, not because of the hormones) but my BP is stable. My doc advocates going slow, so take a really low dose and see what happens.
Low DHEA is a symptom of Addisons's (which I'm sure you know).
Incidentally, I'm only just getting to grips with the idea that my hormonal problems were caused by a concussion two years ago. You haven't hit your head in the past few years, have you? x
And do, if you haven't already, look into LDN. I totally get your desire to get moving and out more and I found LDN really helped with energy levels. My level seems to be 4mg.
And recently I added melatonin into the mix (got it privately because the docs refused to prescribe). It works. Sleep so helps with everything. xx
I have personally found DHEA to be helpful for fatigue, muscle pain & muscle weakness. The rheumatology team always think anything I do outside of the NICE guidelines is a waste of time but some things have been really helpful. If you do go down that route, go to a doctor that prescribes ‘bioidentical hormones’, they are associated with having fewer side effects
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