DHEA – To Take It or Not

What is DHEA?

Dehydroepiandrosterone (DHEA) is a drug that those in the Addison’s world talk about.   Some talk is positive, some is negative.
Some have tried it and think it is the best thing since sliced bread, others have tried, and stop quickly because of their perceived side effects.

Technically Dehydroepiandrosterone (DHEA) and DHEA sulfate (DHEAS) are the major circulating adrenal steroids and substrates for peripheral sex hormone biosynthesis.

DHEA is a Hormone precursor that is produced by the adrenal glands. The problem is, as a rule it is not replaced when your adrenal glands fail, especially in men. For 2 years, we didn’t know anything about it. It wasn’t an option talked about by Derek’s Public Hospital Endocrinologist. It was something I started hearing about in the Forums.

After discussing DHEA with a number of men in the forums I talked about it with Derek. He started investigating. He is not one to listen just to those taking it. He wanted to know the scientific information behind it.   He read multiple studies.

After 6 months of investigation we went to our Dr and asked if Derek could trial it. She had heard of it, but never scripted it so sent him to a private Endocrinologist who worked with “those with complex endocrine issues”. We spent an hour with this Dr.

At the end of that time, we walked out with a 3 month trial of DHEA. The catches:

        It is a prescription only medication.
        It is not available through your normal pharmacy.
        It is not subsidised, so you have to pay full price.
      You have to go to a compounding pharmacy.

DHEA and Testosterone

DHEA increases your Testosterone, in both women and men.  There is he risk of too high a rise in Testosterone because Derek has had, but is currently clear of, Prostate Cancer. We are aware that pushing his testosterone up too high may be an issue.

We decided the trial was worth a trial it.

We knew all this going in. We also hoped (but anyone who knows ACC wouldn’t hold their breath) that as this was a hormone produced by the Adrenal Glands, ACC would pay for it.

Step 1 – Get blood tests of important levels as a base point.

Step 2 – Send script to the Compounding Pharmacy. The Endo gave us the name and contact details. We then contacted them to find out what had to happen.

Step 3 – Wait. Because the drug had to be made for us especially, we knew it would take a few weeks. It finally arrived.

Step 4 – Trial Begins. There needed to be some provable results so we got blood testing. We started with levels of cholesterol, testosterone and DHEA.

Derek began the Trial. – 25mg/day

After a week he felt he wasn’t quite as tired as he normally was by the end of the week.  I actually observed one night about 5 days into the trial, that he was still up working on his tablet and watching TV at 9.15pm.

His normal bedtime for the last 3 years has been 7.30-8.00 pm.

Was this wishful thinking, or genuine result? Time would tell.

After a month I had noticed a difference. He seemed happier, more relaxed, less fatigued (we were able to do more things), but the biggest difference was he became more “loving”. He was not back to pre injury, but he would grab me as I walked past and give me a hug. Something he hadn’t done in a long time. Not that he hadn’t wanted to, he just hadn’t had the energy to do it.

After 3 months we had his levels checked again.

Testosterone Range – 9-25 nmol/L
Pre DHEA – 15.3 nmol/L
Post DHEA – 19.7 nmol/L

DHEA Serum Levels Range: 1.4-8.0 umol/L
Pre DHEA – <0.6 umol/L (undetectable)
Post DHEA 2.6 umol/L

LDL/HDL ratio: <4.0
Pre DHEA – 6.1
Post DHEA – 6.0

The Trial Ends

After 3 months it was decided Derek would take a 2 week break while we got another script, and to see if there was any obvious change.

Within 4 days, he was back to going to bed around 8.00pm at the latest. He was struggling to work properly, he was finding it hard to focus on things for too long.

Monday of week two he struggled home from work and collapsed into his chair. He could barely function. Tuesday got worse. Wednesday he was barely working. He took extra cortisol.

Thursday he again took extra cortisol, had a bad headache, and his blood pressure had begun jumping for no obvious reason. His mood was that of a person fatigued to the point of no patience.

Another thing we noticed is that at some in the first day or two of stopping the DHEA he had knocked his head, and had got a small “mark” which bled. Every morning for 2 weeks he would wash his face, and the small mark would bleed. On the Saturday before he started the DHEA again he was walking into the bathroom and walked into the door frame. He cut his forehead just below the previous mark, and right through his eyebrow. It wasn’t a serious cut, but enough that it took a while to stop bleeding.

The telling issue came at midnight Thursday night/Friday morning of week to off DHEA.

I woke to find Derek tossing and turning. I heard the tell tale signs of burping. I lay there, not letting him know I was awake, as he hates disturbing me.

He had developed a headache before going to bed, and by midnight it was a lot worse. He eventually took panadol and got up for a cup of tea. I went to the kitchen to see him, get him back to bed and, after resting for 5 minutes, I took his BP. After being in bed for 6 hours, it had risen to 157/99.

At this point I insisted he took more HC. We had two more days before we were going to have him take the DHEA again.

Should we give up and start it again?  Was this rapid downhill run truly due to the lack of DHEA?

He suffered on Friday, taking double dose HC. He was not ill, but showing signs still, of too low a cortisol level.  Saturday morning, laying late in bed, Derek asked me if he should take the DHEA or wait till the Sunday.  He was getting worse by the day so I told him to take it again.

Back on DHEA

Derek started taking DHEA again on Saturday, Sunday he felt the same (we didn’t expect anything else).  We have settled on 25mg/day.

Monday he worked from home. He felt tired, but not as bad as the previous week.

Tuesday night our youngest (18 yr old) came into the lounge and asked if we were going to bed, what was Dad still doing up.

We suddenly realised it was 9.45, and he was tired, but not struggling to the point of being desperate for bed.

Other things we noticed.

We have noticed some other things significant to Derek.

The most telling was the small mark on his forehead that had continued to bleed each morning on washing his face for the whole 2 weeks he didn’t take DHEA.

By Monday morning, not only did that mark finally stop bleeding when Derek washed his face, but so did the cut he received 2 days previously.

Since his CAPS event, he has suffered from sharp sudden migraine type symptoms when put in a fight or flight situation. Nobody has been able to get to the bottom of this. The only thing we know for certain is that, if it is a visual issue, the pain begins on the right side of his head, if it is auditory, it begins on the left.

What Derek didn’t realise until he stopped taking the DHEA is that he still suffers these incidents, but the sharpness of the migraine has been reduced when on DHEA. It wasn’t until he suffered a fright in the car on the second Saturday and he got the old “sharp” pain in his head did he realise that in the last 3 months, the pain had been more dull than sharp. He also suffered 3 events in one day.

Clearly this is a Plus for Derek.

The second thing he has noticed is his sleep. We have Fitbits. We use them, not only to track walking, but to track his sleep.

When not on DHEA Derek tends to “crash” for long periods of not moving.  When on DHEA his sleep is more of the normal 3 levels of sleep that “normal” people get.

During the 3 months trial period Derek got a cold.  It is not the first cold he has had but this time, it didn’t come to anything. He took an extra couple of days at home, but he didn’t need to take time in bed. He was able to function. This was a big change from previously when he would end up in bed, taking double or tripple dose HC for 2-3 days just to function.

He is going to continue taking this for at least a year to see if there is further improvement. The fatigue is still there, that is a side effect of the exective dysfunction, the effort to eat with his dysphagia, and the adrenal insufficiency, but it has definitely lessened. With some of the other improvements, for Derek at least, DHEA is something that should be replaced.

As a foot note. The Accident Compensation Corporation has agreed to fund the DHEA, our local Chemist is able to source if for us (from the compounding pharmacy so we simply take the Script to them when Derek takes other scripts in, and now the Dr knows what level to prescribe, she will do the pescriptions.

Today, all is good with the world (at least the world of DHEA).

If you are a male with Adrenal Insufficiency, and you haven’t thought about this hormone, it is worth giving it a go. There isn’t a lot of research where men are concerned, but that doesn’t mean it isn’t right for men. Speak to your Dr or Endocrinologist. If they say NO, ask them why, make them justify not giving it, rather than them making you justify why you should have it.

WARNING:  there are two types of DHEA.  Be careful which one you get.

Wild yam and diosgenin promoted as a “natural DHEA.”   In the laboratory DHEA is made from diosgenin, but this chemical reaction is not believed to occur in the human body. So taking wild yam extract will not increase DHEA levels in people. Individuals who are interested in taking DHEA should avoid wild yam products labelled as “natural DHEA.”   Copied from <http://www.nlm.nih.gov/medlineplus/druginfo/natural/970.html>

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7 thoughts on “DHEA – To Take It or Not

  1. I find it so fascinating that y’all have to get it compounded where as Mo mentioned, we can just buy it over the counter in the vitamin aisle. And the “recommended” dose printed on my bottle is 50 mg/day (which is rather huge!). Amazing the differences in health care between countries.

    I’ve been on it for over five years. It seems to improve my energy levels and overall well being. Whenever I go off of it (as I do occasionally run out… poor planning on my part…), I get more frequent headaches/migraines and just do not feel as well.

  2. Really interesting! I’m a doc with SAI and this is the first time I’ve heard a man taking DHEA as normally in Finland it’s never prescribed as testes normally make enough testosterone so it’s not seen necessary… I’ll have check if I can find studies on this! Good to hear it has helped 🙂

    • Welcome to my blog Veera. DHEA is one of those things that seems to work on many different things. As long as Derek is only taking enough to be at the bottom 1/4 of range it wont effect testosterone that much, but it is definitely doing other things in his body, hence it is the largest produced chemical from the adrenal glands.
      However, I would never recommend anyone take it without having levels monitored because not everyone with AI needs it.

  3. Sounds like the DHEA is a good option for Derek. I have taken DHEA for years now and my dose has lowered over time. (I am secondary and also have no ovaries) Currently I take 25 mg three times week. Last time I had my levels checked I was a little high so I cut back a little. I show symptoms pretty quickly if I take too much. Body odor, oily skin and break outs especially on ,my scalp. I honestly can’t tell you that I feel better taking it….I feel no difference really. But if something is low, I want to replace it. I hope Derek continues to benfit from this! (We can buy it here in the US just like a vitamin….would it be illegal to have me send you some?)

    Continued goo luck!
    mo.

    \\

    • Unfortunately yes, as a restricted medication you need a special licence to import it. Thanks Mo.
      The good news is we dont have to pay as the Government Insurance company that covers his Treatment Injury have agreed to pay.

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