DHEA supplements: high level, fast heartbeat and want to come off it asap any advice?

[carorueil]

Hi there, I posted about 18 months ago my saga with my endo who refused to recognise that major stress trigger messed up my thyroid levels and of course the TSH issue. Then I increased my ERFA from 75mg to 90mg and in April 2022, I started taking 13mg DHEA every day - this combination definitely helped me cope with the constant stress of legal structural battles with our damaged home. My gp did constant blood tests and in November 2022 told me to reduce DHEA to 5 days a week. This year I'd started trying to get a handle of pain management (another issue) and noticed that my heartbeat was 120bpm on what I considered a 'normal' walk (my fitbit said it was brisk). By then I'd reduced DHEA to 4 days a week based on new thryoid doctor. He got me to do blood tests in March this year not based on what I'd been doing for 11 years: this time he asked me to take DHEA the night before, and ERFA 1.5 hours before the blood test to get a 'baseline'. He'd suggested splitting my ERFA/NDT in two since October 2022. To be honest I'm not too sure I notice any difference splitting ERFA. Recentlu I have noticed the faster heartbeat - and DHEA was over the norm based on March blood tests. I have noticed over the last few weeks that the days when I'm not taking DHEA I feel better.. I've been tracking all my symptoms for thyroid gp since all these switches. So in a nutshell he made me go from 52mg per week DHEA (every second day) to 8mg per day (56mg DHEA per week): I definitely felt worse since being on 56mg DHEA heartbeat now as fast sitting down as it was doing a walk! Was in bed at 20.30 at night wrecked...My gut is telling me to stop asap: this week I have stopped taking DHEA for 3 days (last day was Tuesday), I feel much better without it and have been monitoring heartbeat which is lowering... I've contacted thryoid gp who maintains the fast heartbeat has nothing to do with DHEA where I'm 100% certain it is as when I reduced my NDT/ERFA from 90mg to 75mg my resting heartbeat went down, now on 8mg DHEA it's gone up! What I'm hoping is that anyone who took DHEA could advise on how I should stop it - I had stopped it years ago but then I hadn't had the fast heartbeat so feel I'm in a different situation! Throid gp is suggesting beta-blockers which I definitely don't want to take as I feel this is all due to DHEA... Sorry for the long post! Hope someone can help!

[Jaydee1507 Administrator]

Unfortunately I can't advise about DHEA as I don't have the experience.

I had a quick look through your previous posts and can't find where you have posted your vitamin levels. Low vitamin levels are very common in hypo people due to low stomach acid. Ferritin in particular can cause all manner of heart rate issues if it is low. It would be well worth running bloods for ferritin, folate, B12 & D3 as low levels of these mean our thyroid hormone doesn't work well.

Could you also post your latest thyroid results with ranges please?

[carorueil in reply to Jaydee1507]

Thanks Jaydee1507 I get a full check of vitamins at least twice a year for the last 11 years (especially B12/D3 etc) have never had any problem with ferritine/iron. The last blood test I did was in March for thyroid doctor - so those tests were done after taking 13mg DHEA the night before and 30mg ERFA 1.5 hours before the blood test.. He wanted to get his 'baseline: for more than 11 years I've been doing all blood tests without taking any meds beforehand... DHEA was over the 'norms' which is why he suggested going down to 13mg x 4 days a week (but eventually going onto 8mg x 7 days a week). Prior to this test I'd done all the tests without taking any meds for the previous 12 years: so results for thyroid are not in sync with all the previous results I did so not too sure they are of any comparable use! Results below:

Vit D3: 487 (norm > 30.0) 3/11/21 62.2

Vit B12 1025 pg/ml (norm 189-883) 21/2/22 331 pg/ml

Cortisol 22.20 ug/dl (norm 6.02-18.4) 29/9/22 16.00

DHEA 10.7 ng/ml (norm 0.09-9.5) 30/9/22: 10.7 ng/ml (norm: 0.9-9.5)

For thyroid results there's no point in showing previous results as they were taken without any meds before the blood test so not possible to compare:

FT3 : 5.91 NG/L (NORM: 2.3-4.5)

FT4: 1.29 NG/L (0.93-1.70)

TSH: 0.060 mui/L (norm: 0.27-4.200)

AC ANTI-thyroglobuline: 83.00 ui/ml (norm: <115.00)

AC ATPO 59 UI/ML (NORM: <34)

[Jaydee1507 Administrator in reply to carorueil]

Vit D3: 487 (norm > 30.0) 3/11/21 62.2

I'm confused by how you have written these results, there seem to be 2 numbers either side of the reference range. What is your current level for D3?

Where has the 487 come from and if that is your D3 level you are taking far too much.

Are you saying that for these results you took the NDT 1.5 hours before the test? If that is the case then they will show a false high so you are not necessarily on too much.

I can't see a result for feritin or folate.

[helvella Administrator Thyroid UK]

DHEA is treated as a Controlled Drug in the UK. Almost unavailable, seems subject to special monitoring over and above even that. That makes it a huge burden for a doctor to prescribe even if they want to.

Therefore, DHEA is rarely prescribed. And relatively few have even tried it - though I know a few have posted in the past.

I hope someone does reply with helpful experience. But I wanted to explain why there might be so little.

[carorueil in reply to helvella]

Hi Helvella thanks Helvella for your reply .. Well it's prescribed within the EU - both my French gp prescribes it and my thyroid gp as well as other doctors I've seen over the years.. As with most things a little hormone goes a long way!!

[radd]

carorueil,

I think there’s a high chance your heart issues are related more to the inconstant dosing and huge sudden dosing variations than DHEA itself. 

DHEA is the active form of DHEA-S that we need to keep equilibrium of tissue levels. It has a best ratio with cortisol and both follow a circadian rhythm. Dr Peatfield used to say the ratio was of more importance than the levels because deficiencies were easier to treat.

Did you have an actual DHEA deficiency? What are your cortisol readings? 

We tend to have testosterone prescribed in the UK as DHEA is a controlled class C drug (even through it's really a hormone! 🤷‍♀️)

[carorueil in reply to radd]

Hi radd

Prior to going back on DHEA (I'd taken it years ago when I was prescribed tonnes of hormones - which I weaned myself off as I didn't need them especially prednisolone as no synacthen test was done prior to being prescribed it...) I did 2 cortisol saliva tests prior to going back on DHEA and cortisol levels were really well below norm - wasn't surprising as had major stress trigger in 2021 which totally messed up my thyroid - otherwise I'd have been still just on 75mg ERFA which I'd been on for years with stable results.. Thyroid doctor felt that the yo-yoing of not constant DHEA was the issue: I'd started on 13mg in April 2021, and then based on blood test results gone down to 5 days a week in November and then 4 days a week in March on recommendation of thyroid doctor. Thankfully thyroid doctor listens to what I say and my symptoms which I've been tracking these last few weeks (per Dr Peatfields book) and will continue to track for the foreseeable future. Based on my experience he confirms that my body doesn't respond 'normally' to DHEA: since the fwe weeks I've been tracking things I'd felt better on the days when I wasn't taking DHEA. Unfortunately it seems that there are a lot of doctors who prescribe hormones of all shapes and sizes and who don't really know how to deal with things when a patient doesn't fit the 'norm' - I'm sure my French gp wouldn't know how to deal with me.. Interestingly thyroid doctor said he would never have prescribed DHEA for me, since I've stopped taking it last Tuesday definitely feel better and heartbeat has gone down. If nothing else eliminating it from my medications means that I can 'trial' 75mg ERFA/ndt til June and then compare blood tests with my tracking and find out whether I can stay on 75mg ERFA (which I'd been on for 5 years until 2021) or need to go back on 90mg..I've learned from experience that it's easier to deal with one thing at a time as otherwise you can't know what's causing what problem. So far I feel better than I did last week (when on 56mg per week of DHEA). I was prescribed testosterone in Ireland over 30 years ago for endometrioisis - without being explained the side-effects, thankfully bought Endo UK book but to be honest definitely don't want to go on that and definitely believe in the 'less is more' when it comes to all hormones.. A lot of doctors prescribe all types of hormones and really don't know how to deal with a patient who doesn't fit into what they consider 'normal'.. Thankfully thyroid doctor knows I know my body and have a good 'gut' about it (having being overdosed on levothryoxine and having a seizure triggered by that makes you focus on what you're being prescribed!)

[radd in reply to carorueil]

carorueil,

I'm glad you are feeling better now.

[carorueil in reply to radd]

Thanks Radd, I've finally found a doctor who listens to what I say - having had to do battle with various specialists these last 15 years I do know my body - like most of us on this forum, it's nice when we manage to find doctors who trust us to know that and can deal with it without feeling threatened by us!!