Adrenal /HPA puzzle- completely lost

[DB32]

My adrenal problems started 9 years ago when I self diagnosed adrenal fatigue and then decided to trial prednisone 5mg.

I felt myself becoming more unwell as the day went on and woke up the next morning shaking, heart palps and low sugar.

After just one day my whole system was thrown off and I soon realised what true low cortisol symptoms were.

I didn't touch any more prednisone and
I was hoping my body would adjust back to my pre prednisone state but it never did.

Some weeks later I ended up in hospital with low cortisol symptoms and ended up discovering I had some sort of adrenal crisis and I also failed a synacthen test.

Was on pred for about 8 weeks with zero quality of life so I weened off under supervision of endo and managed to get me serum cortisol into the high normal end of the am range.

I've managed to get back to about 60% over the last 8 years or so and got to the point where I could work out and function normally and even took on a high powered job,got married and had a child all whilst working late and working out 5-6 times a week.


Ever since the original crash and hospitalisation I have become super sensitive to almost every supplement and every time I try a supplement or to improve my health it's like my adrenals/HPA just cut off instantly and over 48 hours I spiral down down into a low cortisol mess which takes months to claw back.

Supplements that crash my adrenals instantly :
Zinc -
Mag-
D3-
Adaptogens-
Ssris-
BCAA-
Testosterone -(trailed test 100mg of propionate for 1.5 weeks(3 shots of 50mg), I used because I wanted to be able to abort if symptoms got worse) the reason I did this was because my doctor refused to put me on TRT a few years ago after low test bloods and my HPA didn't like the increase in test.

Supplements that work:
Vit b5
Vit b6
Vit c- if I take too much it lowers cort and if I'm having a relapse this can push it down further(I only take it because I heard the adrenals need it to produce proper amounts of cort)
B12(in moderate doses)

I've recently posted on the bloodwork forum about low test and decided to trial D3 this week As I am desperate to raise free T.

Friday I took one dose of vit D -1250iu and within 12 -24 hours my old symptoms returned and I have basically been in bed all weekend from a complete crash(pathetic I know , I wish I was exaggerating but it's true )

I was hoping to get a trial for TRT but given that my HpA is so pathetic I worry that test will just dump my HPA into an even worse state.

I've been reading about HPA dysregulation vs adrenal fatigue and it certainly makes more sense to me, unfortunately I am pretty cluelesss as to how to repair the HPA or if I am doomed to spend my life in a low energy and fatigued state with poor functioning hormones and no energy to work out.

I'm really frustrated and feel I'm damned if I do and damned if I don't.I don't know what information to trust as it was things like salivary cortisol that convinced me I was unwell in the first place and was desperate enough to try a steroid because I just wanted to be rid of my awful symptoms. I hate feeling like I'm spinning my wheels.

If there is anybody that can help please get in touch as I am struggling to keep going and really need to make the right steps forward in a more productive manor under the guidance of a specialist in this area and support from a community who understands this.

I have limited funds but I will invest in a specialist but am very wary due to bad advice in the past.

Thanks

 

[CoastWatcher]

You clearly need to be working with a capable physician. Where has self-diagnosis brought you? You determined that you had "adrenal fatigue," and that initiated the problems you are still dealing with after you put yourself on prednisone. You self-prescribed propionate and encountered more troubles. There are certainly doctors who can help you, and we can offer referrals. However, they engage in a fee-for-service practice model. It might not be as expensive as you fear - are you open to such a referral, or are you committed to working with an insurance network?

 

[ratbag]

I have similar issues and have HPTA dysfunction from a head injury when younger. However anyone can have HPTA dysfunction without head injuries. My adrenals were also like yours very low and I hooked up with an MD who was an HRT specialist and he saw my saliva labs from ZRT and put me on HC 45mg daily and after 8 months reduced it to 30mg daily and that was the key to get other stuff working because there were a lot of meds I couldn't take because of low cortisol. In fact cortisol levels must be ok in order for your body to deal with other things effectively. Once my cortisol was ok, he started me on florinef and then he started me on thyroid meds and that was a big improvement. From there it was TRT, HCG and DHEA and now I'm nearly normal except for an iron problem I have. So yeah you obviously need to get a MD who knows how to treat cortisol insufficiency effectively... very few MD's know how to do this. If your in the USA I'd suggest you contact Defy our sponsor as they know how to deal with cortisol issues.

 

[DB32]

Thanks for your replies.

Coast watcher- I fully take responsibility for my irresponsible actions and am ready to work with a specialist who truly knows what they are doing, it's just too much guess work and a maze of contradictory research.

Ratbag - how long has it taken you to get tuned up? Are you able to workout ? Do you ever need to up your doses of cortisol when doing anything intensively physical?

I would be grateful of any introduction you could make.

I'm based in the UK so would be open to working with someone overseas (US or Europe ) providing the patient care is quite hands on.

 

[ratbag]

Look at one of my recent posts there is an MD in Belgium I mentioned who is one of the best for all hormones... Also Coastwatcher has mentioned before that there is a good TRT MD in Dorset UK but not sure about his cortisol / adrenal skills.

It took me a few years to get sorted out but they knew less back then (10 years ago) Cortisol can require additional dosing when you are sick because the normal rhythm for cortisol increases when you are sick.. so on those days you increase it. Other than that you leave it.

 

[CoastWatcher]

Look at one of my recent posts there is an MD in Belgium I mentioned who is one of the best for all hormones... Also Coastwatcher has mentioned before that there is a good TRT MD in Dorset UK but not sure about his cortisol / adrenal skills.

It took me a few years to get sorted out but they knew less back then (10 years ago) Cortisol can require additional dosing when you are sick because the normal rhythm for cortisol increases when you are sick.. so on those days you increase it. Other than that you leave it.

https://themenshealthclinic.co.uk

Here is a link to the clinic in Dorset that Ratbag refers to in his post. Can they help you with your, complex, issues? I hope so, but have no idea. I do know that the medical director is a friend of Nelson's, and is passionate about men's health. If you are anywhere near Dorset, I would contact them and make inquiries. It's my understanding that Dr. Stevens will respond to an initial email from a potential patient.

 

[DB32]

Thanks will make some enquiries this week.

I'm confused about what is happening to me today , I feel like I knocked my HPA out of its normal groove with the D3 which would technically mean the hypothalamus isn't telling the adrenals to make cortisol properly .

But I've had lower back pain all day (I get this when my adrenal function is off) which suggests that the body is telling the adrenal glands to produce more cort(feels like they are being blasted by something internally)

They kinda feel numb and ever so slightly colder than normal..

Is there another possibility that my ACTH is on overdrive and the D3 has somehow knocked over /sue presses something that has inhibited the adrenal hormones from being made efficiently?

What does this mean ?

 

[ratbag]

With low cortisol it's a common symptom to have a sore lower back and sore knees. I had this too. Low cortisol compromises everything. No point trying to understand why... rather get on it by contacting one of those MD's. TRT and Thyroid do not work properly (amongst many others) with low cortisol. You will have lots of weird stuff happening symptom wise until you get that sorted out.

 

[DB32]

Did you also get fast heart rate? The worse my adrenals get the faster my heart beats when exerting myself.


I am going to book a consultation this week and go from there, even if it's just to get some tests done that will shine a light on what is really going on

 

[DB32]

TRT doc booked next week Friday , fingers crossed will be successful.

Need some advice on who to see regarding adrenals, any shouts for doctors who have successfully brought up cortisol without using HC or glandulars?

I am also keen to read up on adrenals and TRT in my spare time, any recommendations for articles books ect

A lot of people on the forums tend to go the HC route but having previously tried that with zero quality of life it's not an option to me so I need to figure out how to bring up my levels (cort and test)without my HPA getting knocked out.

 

[ratbag]

Did you also get fast heart rate?

Yes I had a heartbeat of 100 or over sometimes. It would pound away. Once my MD started me on HC it went down to 80 and stayed there. It was a huge difference. I do not know of any other methods to treat low cortiosl other than HC or glandulars. If your low in cortisol then you shouldn't have problems with taking it. You can go to Discount Labs and get a diurnal saliva test. This is what all the best HRT MD's use to determine if you have adrenal problems.

 

[DB32]

Thanks ratbag, it's a route that brings back some rather traumatic memories

When I was put on steroids(prednisone) after my hospital incident I literally couldn't maintain stable levels and had to completely quit my whole life and spent most of my day in bed then needed to take more just to walk to the shops and back.

I was prescribed 5mg,then 7.5,10, then 15 then 20 and still had low cortisol symptoms which I presume was from not being able to maintain a steady level from the peaks and troughs.Based on this my doctor didn't want to put me on HC as he thought it would be even harder to maintain blood levels.

I did tonnes of research at the time and remember there being a study by professor hindmarsh who created an injectable pump like delivery for a child who had issues metabolising oral cortisol and regained quality of life after using the injectable method.

After getting nowhere with oral medication and nobody taking me seriously I decided to quit the prednisone because I was getting awful side effects and basically hated my life so much that even the thought of not existing was better than being in such a low state of health.

I found it worrying at the lack of information out there on this subject and the only response I got from people at the time was really negative suggesting there was something wrong with me for not getting better or responding to the seemingly correct doses.

I'm guessing if I mess around with things like pregnenolone or progesterone it will likely shut off my HPA and have a similar "crash" effect on me and so feel a bit stuck between a rock and a hard place.

Think I will take my chances and just focus on getting my test levels sorted and hope that hcg allows my body to backill its own pathways and maintain a low but not fatal level of cortisol.

Yes my cortisol is shitty now and will no doubt become even worse on testosterone but that's nothing compared to the level of hell of being on corticosteroids.

Unless there is any medical advancement or sufficient anecdotal experience I am not prepared to take any risks as i now have financial commitments which mean that I need sufficient income and cannot afford the luxury of gambling what I already have with what may be and ending up with even less.

 

[ratbag]

I too was in a similar position. Very weak and could hardly get out of bed. Is your aldosterone ok? I'm on Florinef too and it's been a big help to my functioning cortisol

 

[DB32]

This was years ago and have been off medication for over 7 years and have managed to get my body to produce its own cortisol.

When I was on cort meds I was basically disabled and feeble and no matter what they tried they couldn't do anything.

They didn't even test my aldosterone just my cortisol.

All I know is on pred my body couldn't handle any stress at all and there was no chance of working out.

Now even with poor adrenal function naturally I can still drag my ass through a hard leg session and not feel too bad.

I feel like there isn't any room for error with the HPA like there maybe is with test or other hormones and to be honest it has been the cause of a lot of my depression as an adult feeling like I'm stuck in this half way state between very unwell and normal..

Woke up this morning with strange sensation in lower back, low blood sugar and a general sort of body tremor ,fatigued and foggy... when I'm most symptomatic of low cortisol I literally feel like I have no purpose and hate myself for being unable to resolve the situation.

It's also frustrating not being able to accurately reverse engineer when something goes wrong (this latest crash was from taking vitamin D for one day!!! Which should not have happened)

I don't know if my feedback loop is so sensitive or if the D3 has pushed down my cort by effecting the production pathways.

I genuinely do not have the money to do a full investigation and am reluctant to spend all that money only to be met with guess work and theory, nobody seems to know why things lower cortisol(test for example..so many posts on this yet nobody actually can explain why)

If it were as simple as taking hormones I would be on everything out there but it's not.

 

[ratbag]

If your MD didn't test your aldosterone but yet knew you were short of cortisol then he was an idiot. You appear to be very sensitive to almost anything. Money aside you need an HRT MD specialist who knows what to do. I can tell you that your most likely to have very low IGF-1 if you have any HPTA axis problems. I was low in everything. I also did a Spectracell Micronutrient analysis because I have a thyroid receptor problem and I'm trying to find a way to figure it out. The Analysis showed I was deficient in Biotin, Manganese and B12 (despite recent hospital labs showing I was near top of range for B12) So I started supping those and I do feel better because of it.

I would say Defy is your best bet. They are really good at HRT and their rates are very good. They don't gouge you like some TRT doctors do. There were a lot of hormones I couldn't take until my aldosterone and cortisol were sorted out. In fact there were basic meds that I couldn't tolerate until that was done. It was way over the expertise of my principal Care physician ( an Endo) and quite often he'd state it's all in my head and I should just suck it up and get on with it. I was also told that he knew there was nothing wrong with me. I really wanted to knock him out after such comments. Needless to say I've never seen him since.

 

[DB32]

He said because I was secondary (apparently) I didn't need aldosterone tested(despite me telling him my blood pressure kept dropping upon standing)

What tests are there to assess the pituitary function?


first things first is get on TRT I think and then see where that leaves the cortisol.

I've always had sensitivities but I used to be able to handle quite a lot of things before my adrenals crashed, they are so sensitive to everything now it's really annoying (especially the pounding heart thing)

Too much vitamins do weird to things my body and I can feel my body reacting to them almost instantly.Given that I've been off of pred for years and only got back to 60%(with several ups and downs ) it's clear I'm never going to get any better so maybe your right it may be worth working with Defy to see what they can come up with regarding cortisol or at least giving it a shot.

There is also an anti aging place in london that reviews all hormones (thyroid, GH, progesterone ect) so I might get some bloods done there to see what I am low on.

Do you know where I can start re vitamin /Mineral deficiency blood tests?

I'm also going to start the Low FODMAP diet from tomorrow to see if I can reduce inflammation in my gut and lose a few lbs.

Don't even get me started on doctors and their pathetic "it's all in your head" diagnosis....

Yea doc..it is all in my head to throw my whole life, physique ,close relationships and career down the drain to stay in bed and watch tv all day..sure! Makes you question how /why they ever became a certified practitioner in the first place.

 

[ratbag]

I used Spectracell labs for a micronutrient analysis and learned from them I was deficient and low on some. Following their advise I started supping those items and started feeling better. Ironically the same hospital labs 2 months earlier showed I was mid range or higher. After it was all over I was glad I had used Spectracell labs.