Finally prescribed some DHEA supplements, but I am nervous about potential side effects!

[Sparkle44]

I have had a long batle with extreme fatigue for the last 2 years, along with a range of other symptoms which have been progressively been getting worse! After 2 years of repeated bloods, ultrasounds, CT scans and MRI's the trail led to an issue with my hormones. The majority of hormonal blood tests were and are below the normal range. When my prolactin became elevated they did a Pituitary MRI and found a 3mm Lesion / Part Cystic Adenoma.

My DHEA has been consistenly low:

-DHEAS:

0.9 umol/L (1.6 - 7.8) 27/12/2017

0.6 umol/L (1.6-7.8) 15/03/2018

0.7 umol/L (0.9-11.6) 02/05/2018

0.6 umol/L (0.9-11.6) 18/07/2018

-Serum Testosterone:

0.28 nmol/L (0.29 - 1.67) 03/01/2018 <0.5

0.3 nmol/L 07/02/2018

<0.5nmol/L (0.0-1.8) 18/07/2018

-Free Androgen Index:

0.6 (1.0 - 6.0) 03/01/2018

0.6 (1.0 - 6.0) 03/01/2018 0.5 07/02/2018

.

-Prolactin:

532 (102-496mlU/L) 02/05/2018

465 (102-496mlU/L) 18/07/2018

-

Cannulated Prolactin Test:

602miu/L (baseline), 543miu/L (30mins), 626miu/L (60mins)

UPDATE: The good news is that after sending an email to my Endocrinology Consultant yesterday who told me that this was not an Endocrine problem...???? They have now agreed to prescribe me an initial 3 months of DHEA - Prasterone 25mg (1 per day).

Whilst I am relieved that I am finally getting some treatment I cant help being a little nervous about the side effects I have read!! I certainly dont want to put any more weight on; I dont want acne as I already suffer with my skin; and I dont want to develop cancer!!

I just felt that anything has got to be better than how I am feeling now so I have taken 1 tablet this afternoon.

If there are any safer DHEA meds to take please let me know as I am aware that they are not regulated in the UK. Mine were prescribed and came with a leaflet warning me that they are not a licensed medication in the UK.

Has anyone got any positive stories about taking DHEA???

[trelemorele]

To be honest, with all hormones results low like yours, and being fobbed off with "not our problem" or " nothing wrong with you" I'll be looking for another team of endocrinologist.

Yours not fit for purpose.

From what I gathered you have below range at least 4 hormones - all.shouk be addressed and treated.

Letting you go with measly 25 mg dhea you can purchase without prescription anyway it's not going to solve your health problem.

By the way - I wouldn't stress out about dhea. I've taken it, loads of people with within range levels supplement too. 25mg is starting dose.

I personally prefer supplementing with pure testosterone instead.

By the way my dhea and testosterone levels are on the lower side but within the ranges.

[Sparkle44 in reply to trelemorele]

Hi I am under my second Endo now from 2 different hospitals. It is frustrating!

I will ask about pure testosterone but I am slightly worried about developing male characteristics. I will see how I go on this for a couple of weeks. I have many more blood results below the normal range its hard work. Your advice is appreciated.

[trelemorele in reply to Sparkle44]

2nd lot of Endos is not real achievement.

I'm on my 4th endo and probably 10th GP...?!🤔 And yet to find a GP who's educated and knowledgeable to standard.

You're not going to develop male characteristics if your testosterone is within female ranges. But yours is even below that.

You need to discuss each and every hormone below or low or too high separately with your endo and start treatment for all. I.e. testosterone, estrogen, progesterone, dhea, cortisol etc whatever is missing.

If they refuse or fob you off you need to move on to someone who's knowledgeable and willing to help you - another endo. You may have to travel further afield.

From personal experience - the bigger the city the better team and choice of consultants. And good endocrinologist are notoriously hard to find.

[Sparkle44 in reply to trelemorele]

This is valuable advice, thank you! The consultant is only treating my low DHEA despite all these other results either below the normal range, above the range or very borderline!!

Androstenedione Level - 1.8 (1.4-14.3) 18/07/2018

eGFR (Low) -

64 (70-130mL/min) 02/05/2018

64 (70-130mL/min) 18/07/2018

64 (70-130mL/min) 02/08/2018

Osmolality (Low) -

283 (285-295mOsmol) 18/07/2018

Creatinine (High)-

83 (45-84umol/L) 18/07/2018

84 (44-80umol/L) 02/08/2018

Creatinine (Urine) -

31.60 (2.47-19.2mmol/L) 21/06/2018

Ferritin (Low) - 24 (22-275ug/L) 18/07/2018

Serum Folate (Low) - 3.6 (3.1-20.5ug/L) 18/07/2018

Inorganic Phosphate (Low) - 0.71 (0.81-1.45mmol/L) 02/08/2018

ESR (High) 11mm/h (1-12mm/h) 02/08/2018

Active B12 (High) >128 (25-108pmol/L) 18/07/2018

[trelemorele in reply to Sparkle44]

You have a lot going on there health wise.

You've got thyroid and pituitary problems there, and all deficiencies and out of whack bloods possibly stemming from that pituitary adenoma with thyroid chiming in. See if it's possible for you to zero in on endocrinologist/oncologist or endo specializing in pituitary problems, to get you sorted with that. Have a good Google to see if you can find one in bigger city. You have clearly inflammation going on in there - high esr - pituitary input?

Couple of the deficiencies you can tackle yourself i.e. iron and folate, however I'd ask for two more referrals gyne and endo/oncologist/pituitary wizz referrals ASAP with fast tracking. Replacing only with dhea or testosterone without tackling root cause it's only going to mask real problem.

Your prolactin is high - again pituitary input....!?

You may possibly need that pituitary tumour lasered off and all will sort itself out then. You definitely need more clued up endo. Leaving you with those blood results unresolved and feeding you dhea instead it's not medically and morally justified.

If you don't get answers, resolutions to your health problems change doctors as often as needed till you find one clued up. Don't settle without proper medical resolutions.

[Sparkle44 in reply to trelemorele]

Thank you so much for your feedback!

Just curious, what should my thyroid results be as the Endo hasn’t even mentioned them as a problem?

I have a gynecology appointment next month & neurology in October. No one seems concerned about my thyroid.

I agree that the response to all my low blood results is poor and I am scared about cancer being undiscovered in my body! The CA125 is very normal!

Wendy

[trelemorele in reply to Sparkle44]

I don't see your thyroid results...

The one you posted 9 month ago seems average but there was only TSH and t4.

You need to repeat them or if you have recent one show us the new one with reference ranges.

I've mentioned thyroid as you talked about it in one if your previous posts.

Your thyroid may be affected by pituitary too

[Sparkle44 in reply to trelemorele]

Hiya, here are my recent Thyroid blood results. Please let me know your thoughts. I have a right benign module on my Thyroid!!

-TSH: - 2.73 (0.27-4.20mlU/L) Previously- 1.85 on the 02-05-2018

-T3 Free Tri-iodothyronine level: - 4.1 (3.1-6.8pmol/L) Previously - 4.5 on the 02-05-2018

-T4 14.8pmol/L (12.0-22.0) 02/08/2018

-Free Thyroxine Level: - 16.2 (10.0-23.0pmol/L) Previously- 16.9 on the 02-05-2018

-Androstenedione: - 1.8 (1.4-14.3nmol/L)

-ACTH Level - 11 (no normal range given?) Previously - 6 on the 02-05-2018

Oestradiol - 105 (no normal range given?) Previously - 584 on the 02-05-2018

-Cortisol at 5:30pm - 102 (no normal range given?) Previously - 114 on the 02-05-2018

-HbA1C - 5.4 (4.0-5.9) on 02-05-2018

[trelemorele in reply to Sparkle44]

Quick rundown on what I spotted out of order

T3, t4 low should be higher but doctors won't consider as inadequate

Estrogen looks too low either ovarian failure (if you young) or menopausal but it to read properly day of the cycle needed

Cortisol should have ranges given but it looks low as well as acth which drives cortisol production

How old are you?

I tell you what, best if you get your endo to run tests for all possible hormones on the same day and take note of your cycle.

What should happen next he/she should lie all tests in front and analyse each and every one and connect the dots.

I.e.. estrogen low, why, is progesterone low? Testosterone is low, age - patient menopausal - prescribe HRT

I.e. prolactin high, why, adenoma, cortisol low,why, acth low, why, adenoma? Etc...

Low testosterone, low estrogen, low thyroid, cortisol - all major players when it comes to fatigue. Your all bloods are very low, well some are higher.

I'm.Not a doctor but I've had my fair share of various hormonal problems and I know all hormones work together as well as they're antagonize each other. So there has to be balance and harmony for good health

Your doctors did not analyse your blood tests at all and didn't come to a conclusion of treatment.

I don't know why, is it because that doctor is lazy, stupid, poorly educated or all three....

You need a good endo to look at it and start treatment

[Sparkle44 in reply to trelemorele]

Hi I am 45 and I have regular periods on average 29 day cycle. Lasts 5 days and is like clockwork to the day of my period app. They checked if I’m pre-menopausal and apparently not. I started periods late at 16. Might be a factor? I do have 5 fibroids. 3 of which are 4.5cms. I also had a cyst that was bleeding on my left ovary. Due to on going lower back ache I am having another scan to check my ovaries!

[trelemorele in reply to Sparkle44]

Hey sparkle

Oh dear....

Back pain = low estrogen or low cortisol or fibroids or spine degeneration.. possibilities are endless however you have some of those.

You're still young yet at the age of starting menopause.

There's lots going on. You should educate yourself so you don't have to rely only on doctors opinions.

I was told I'm.not menopausal yet I had all symptoms of peri menopause, as soon as I.went on HRT all disappeared. I've had debilitating back pain due to low estrogen and progesterone but they didn't test that only fsh to diagnose me with "not menopausal".

Some fibroids if not growing or causing bleeding or pain are left alone otherwise they should remove them. I don't know your situation. But the problem is doctors you see seem to leave you to plod on instead of relief your problems via medications or removal. This is quite common in the UK due to - insert appropriate.

Anyway you have lots of quite obvious imbalances and some various growth I.e adenoma, fibroids etc. Fibroids are hormonal by the way often seen during prior to menopaue .

Try to sort it out. You need to get yourself more involved from medical knowledge point of view and start pestering doctors for solutions

[Sparkle44 in reply to trelemorele]

Thanks! Will do! I’m constantly researching & trying to find answers and it’s because of the knowledge I go armed with that I have got this far, otherwise I would have been discharged - that’s what Kings attempted to do!

I will persevere! I recognize as there is a lot going on it’s not going to be a quick process. In terms of peri menopause I would have experienced irregular / changes to my periods as a first sign which is not the case so I am defo not worrying about that at this stage. Although, I’m sure it’s waiting in the wings

[Angel_of_the_North in reply to Sparkle44]

I couldn't take testosterone as I gave me real 'roid rage. That's why I take DHEA. It keeps my testosterone near the top of the range for a woman and doesn't make me smash things every time I get cross or frustrated. Note that although supplement companies sell DHEA and will sell to UK, it is actually illegal without a precription. See gov.uk/government/publicati... You'll find it under Prasterone

[lady_eve in reply to Angel_of_the_North]

Good evening, Angel.

I think I may have asked you this before, but if you could possibly let me know a bit more about the pharmacy that supplies your DHEA, your experience with them and the preparation you're taking, I'd be grateful. A PM, of course, please. I really feel that I'm chasing my tail on this at the moment and the stress is doing me no good at all. Thank you.

[Angel_of_the_North]

I've been prescribed DHEA for about 10 years. Can't think of any side effects - mine is a bioidentical though. Just 12.5mcg a day in a divided dose. 25mcg is high for a woman. DHEA is a controlled drug in the UK - you aren't allowed to import it or buy it without a prescription. If I don't call and get my prescription within 28 days of issue, it is cancelled because of this and I have to get a new one.

[Sparkle44 in reply to Angel_of_the_North]

Thanks for your reply. Do you think I should ask for a lower dose of DHEA?

[Angel_of_the_North in reply to Sparkle44]

I don't know, but I'd ask why that amount and why no other hormones (if there is pituitary problem, I would expect you to need most hormones) as DHEA is one of the least prescribed hormones in the UK as it is unlicensed so the prescribing doctor has to take responsibility. I found that a very small increase or decrease in dose makes a big difference. I can feel the difference between 10mcg and 12.5mcg a day.

[Howard39]

Hi

I have taken dhea for a nil reading of dhea. It felt a little red bullish for me and my specialist prefers pregnenelone ( 50 mg would be the equivalent)

I’d say the dose you were given was about right.

However I now take adrenavive - completely natural and I feel so much better on it.

Good luck

( see drsarahmyhill.co.uk and search under adrenal gland the gear box)

[Angel_of_the_North in reply to Howard39]

I take Adrenavive as well as DHEA (and other hormones). No way are they interchangeable for me.

[Howard39 in reply to Angel_of_the_North]

Well pregnenelone is far better than dhea. ( see the link)

I can only say that as my dhea was nil I tried a few options but with sufficient adrenavive you should not need dhea.

I monitor my temps daily and I instantly could see and feel the difference once I’d swapped onto adrenavive and I changed to ndt shortly after.

I am lucky tho as my specialist is a top endo and has been for 38 years albeit private.

[Sparkle44 in reply to Howard39]

Hi Howard any chance of inboxing me your Endo’s details if they are based in London? I do feel like I might have been fobbed off & still have many results out of the normal range which haven’t even been discussed or raised by consultant! First morning after taking DHEA was the worst fatigue I have ever felt. Yesterday I had a left temple headache & pressure for most of the day ( I never get headaches). This morning I woke up feeling nauseous but I am watching out for any symptoms/changes!

[Howard39 in reply to Sparkle44]

She is full at the moment - sorry I think she’s 8000 patients.

She did take on some correspondence only patients ( for adrenals in March and several friends were helped)

I doubt she’s in a position to take on any more.

It’s a shame as you can speak to her over the phone and request tests yourself.

[Sparkle44 in reply to Howard39]

No worries! She sounds good and I’m high demand!

[Angel_of_the_North in reply to Howard39]

My specialist is also a top women's private endo, so I'm lucky in that. Fewer steps from DHEA to testosterone (can't take testosterone directly without turning into The Hulk on bad day) and It avoids the progesterone steal, Cortisol doesn't convert to testosterone so no way could Adrenavive replace DHEA.

[Howard39 in reply to Angel_of_the_North]

Adrenavive helps low cortisol and low dhea.

The ingredients have been made available to a few specialists.

I know personally that it does as I produce 0 dhea. I’d have flat lined when I came off pregnenelone.( pregnenelone was preferred to dhea as it is more physiological because it is upstream of all adrenal hormones including progesterone and cortisol.

Cholesterol is the raw material from which steroids are made in the body. The next biochemical step is pregnenelone as this is the mother and grandmother of all steroid hormones. By starting off with pregnenelone it means that all hormones can be naturally synthasised in the correct physiological balance.

Hence the body can do it’s iwn natural balancing act)

[Angel_of_the_North in reply to Howard39]

I take DHEA for low testosterone. I think that what is supposed to happen is that if you up your cortisol, things start going down the DHEA-testosterone pathway instead of the progesterone-cortisol pathway, but that just doesn't happen for me, and it all assumes that your brain is capable of the balancing act, which, with my sub-optimal pituitary, it just doesn't seem to be. that's why I need to start at least one step down the required path.

[Sparkle44 in reply to Angel_of_the_North]

That makes sense! Listen to your body and go with what feels right for you! Hope you manage to get the right balance to bring you to full health soon!

[Sparkle44]

Thanks Howard I will take a look!

Have also been reading about K-7 and would love to lose some weight alongside getting better. Does all DHEA help you to lose weight??

[Angel_of_the_North in reply to Sparkle44]

I gained a little weight with DHEA.

[Sparkle44 in reply to Angel_of_the_North]

Weight will not be good for me

[Howard39 in reply to Sparkle44]

I stayed the same but for me the meds felt artificial. Pregnenelone was fine a tad weaker I’d say for me but adrenavive was just right.

I’d definitely not go back to dhea.

[Sparkle44 in reply to Howard39]

I will enquire about adrenavive. Thanks!

[hairyfairy]

I once saw a documentary about a woman who was apparently healthy, but died suddenly in her sleep. It turned out she had been taking large doses of DHEA, & it interfered with her heart rythm. This is why I`d be wary of using it.

[Sparkle44 in reply to hairyfairy]

Wow! Noted!!!

[Angel_of_the_North in reply to hairyfairy]

Was it prescribed and did she need it?

[hairyfairy]

No.