Is this an adrenal problem?

[Galixie]

I'm hoping those who are more familiar with the topic can help me figure out if I'm dealing with some type of adrenal issue (bonus points if you can also tell me what type, lol).

I have been trying to manage presumed hypovolemia (presumed because actual testing isn't available for confirmation) since 2016. I used florinef for about 3 years before coming off of it. (It helped but the side effects got too bad.) I have had low DHEA and testosterone since at least 2013. My other hormones are in range. My 8:15 AM cortisol was 11 (reference range 6 - 30).

I had a major uptick in fatigue starting about a year and a half ago. Almost a year ago my blood counts went off (elevated RBC and WBC). Primary polycythemia was ruled out. My EPO level is normal, which it shouldn't be if it's secondary polycythemia. It might be relative polycythemia, but because of the lack of available testing, I don't know for sure.

I don't think polycythemia is common with adrenal problems, but since it might be relative polycythemia caused by low blood volume, and low blood volume is also associated with adrenal insufficiency, I am wondering if there might be a connection between all these odd puzzle pieces.

Am I just barking up the wrong tree entirely?

 

[heapsreal]

With low dhea and cortisol it's not usually an adrenal issues but a hypothalamus/hpa signalling issue. Signals from the brain to the adrenals are low for some reason but common in cfs.

I find taking dhea at 25mg/day and pregnenolone at 50mg/day helped improve my low cortisol but I needed to start on these hormones at very low doses and build them up. Too much and I got overstimulated. But when they are at a good level I felt better, not cured.

I now also use testosterone, it has helped my general recovery and mood alot. But I did have to get on top of chronic viral and bacterial infections first.

Just a thought, if you are on testosterone replacement it can increase red blood cell counts but maybe only just above the reference range and said to not be dangerous ie erythrocytosis, similar to people who live in high altitude get, but smart to confirm with a Dr it's an issue.
If on trt you may need to lower your dose or stay at the same dose per week but increase your injection frequency eg if on 100mg once per week, try 50mg twice a week or 35mg 3 times a week. Reducing the fluctuations can help. Otherwise some people donate blood every few months.

 

[Galixie]

With low dhea and cortisol it's not usually an adrenal issues but a hypothalamus/hpa signalling issue. Signals from the brain to the adrenals are low for some reason but common in cfs.

I find taking dhea at 25mg/day and pregnenolone at 50mg/day helped improve my low cortisol but I needed to start on these hormones at very low doses and build them up. Too much and I got overstimulated. But when they are at a good level I felt better, not cured.

I now also use testosterone, it has helped my general recovery and mood alot. But I did have to get on top of chronic viral and bacterial infections first.

Just a thought, if you are on testosterone replacement it can increase red blood cell counts but maybe only just above the reference range and said to not be dangerous ie erythrocytosis, similar to people who live in high altitude get, but smart to confirm with a Dr it's an issue.
If on trt you may need to lower your dose or stay at the same dose per week but increase your injection frequency eg if on 100mg once per week, try 50mg twice a week or 35mg 3 times a week. Reducing the fluctuations can help. Otherwise some people donate blood every few months.

I have not tried to replace testosterone. I did try low dose DHEA (which is actually difficult to find anywhere as the majority of what's available it much higher dose). I stopped taking that when it was suggested that it might be the cause of the polycythemia, but the polycythemia persisted even after I stopped taking it and my level is back to low again.

What kind of doctor would be able to diagnose the signaling problem with the hypothalamus? I really need to find a doctor able to get on top of this, because it's clearly been basically ignored for years.

 

[sunshine44]

I am going through something so similar. I am bedridden and not taken seriously though. But most people around me ( my volunteer nurse etc) say I clearly have an undiagnosed adrenal issue. I’ve been told it could be my hypothalamus origination by a supposedly really good dr…. Yet his solution… was very limited.

I also believe I’m hypovaelic as well. I didn’t realize that could be fully connected to adrenals. No one has ever tested me on it though.

I could go on and on. No, I don’t think you are barking up the wrong tree. I think this was going on in me for at least a decade before I collapsed.

 

[almost]

Hey @Galixie, I can't chime in on your question, but wanted to say I love your avatar. Often, I actually say something very similar when asked how I'm doing or how the med visits go.

 

[Galixie]

I am going through something so similar. I am bedridden and not taken seriously though. But most people around me ( my volunteer nurse etc) say I clearly have an undiagnosed adrenal issue. I’ve been told it could be my hypothalamus origination by a supposedly really good dr…. Yet his solution… was very limited.

I also believe I’m hypovaelic as well. I didn’t realize that could be fully connected to adrenals. No one has ever tested me on it though.

I could go on and on. No, I don’t think you are barking up the wrong tree. I think this was going on in me for at least a decade before I collapsed.

I don't recall what I had originally searched, but there is definitely an established link between hypovolemia and adrenal insufficiency. This article dates back to 1970:
https://academic.oup.com/jcem/article-abstract/30/2/252/2716021

And here is one from 2020:
https://link.springer.com/article/10.1007/s12020-020-02458-3

Unfortunately, testing for low blood volume is not available (at all) in my region, and yet I keep encountering doctors that want absolute proof despite the fact that no testing is available. It's crazy.

I've definitely reached the point where I need medical intervention. Now the question is what type of doctor and what type of testing needs to be done. Does hypothalamus fall into endocrinology?

 

[sunshine44]

I don't recall what I had originally searched, but there is definitely an established link between hypovolemia and adrenal insufficiency. This article dates back to 1970:
https://academic.oup.com/jcem/article-abstract/30/2/252/2716021

And here is one from 2020:
https://link.springer.com/article/10.1007/s12020-020-02458-3

Unfortunately, testing for low blood volume is not available (at all) in my region, and yet I keep encountering doctors that want absolute proof despite the fact that no testing is available. It's crazy.

I've definitely reached the point where I need medical intervention. Now the question is what type of doctor and what type of testing needs to be done. Does hypothalamus fall into endocrinology?

Absolute same. I’m quite a severe case. I can’t believe I can’t find one person that will test my adrenals in seven years of being bedridden (during hospitalizations) although they dyd give me two pm cortisol tests bc I demanded 🙄 which told like 1% of my picture. But I also can’t find anyone that tests for low blood volume either. It’s like a bad dream.

I’m currently trying to work with a long distance dr. And we are doing to Dutch test for initial finds, then will move to other bloodwork if needed. But, she’s limited, long distance and there are no scans ultrasounds I can do with her. I’m trying to get into Mayo but insurance not accepted there for 6 years now.

Anyways, I’ve yet to find a hypothalamic specialist. I would guess it would be under endocrinology. The Dr I had that told me it was my hypothalamus, not adrenals, was long distance CIRS specialist, took no bloodwork for adrenals or hypothalamus and really presented very few ideas of how to correct it.

So, I really know so little about what I have. Multiple drs and 3 hospitals in my area said they don’t even know how to do adrenal testing 😅🤣 because my husband and I have begged for testing during hospitalizations. It’s honestly like the twilight zone! This shouldn’t be so hard to find out.

Let me know if you find the correct specialist and I will let you know here if I ever do.

 

[Galixie]

Let me know if you find the correct specialist and I will let you know here if I ever do.

Ok, I will.

 

[godlovesatrier]

You could try life extension reishi, or ginseng. Ginseng will normalise cortisol and increase t more potently in my opinion. Reishi isn't as strong but it will also do the same thing. My t has still been low on reishi though 7.3 when severely stressed, when not stressed it's 11. Ginseng is super stimulating but it could fix you up. I'd take siberian ginseng, I think solgar is 1 cap 3x a day, or 2x if it gives you insomnia. Take it for 5 weeks, with 2 weeks off in between cycles. It will take about a week to normalise cortisol and insulin sensitivity, so you might feel off for a few days.

Ginseng eventually made my mood swings so severe I had to stop it. I do not suffer from mood swings normally but a lot of different meds and supps give me that problem. Good luck.

 

[Hope_eternal]

@Galixie Have you been seen by an endocrinologist? Functional doctors can do testing for adrenals but the test aren’t recognized by mainstream medical, My gynecologist tested my hormone levels at one time.

 

[heapsreal]

What kind of doctor would be able to diagnose the signaling problem with the hypothalamus? I really need to find a doctor able to get on top of this, because it's clearly been basically ignored for years.

A neurologist or endocrinologist but your GP should be able to run all your hormone labs and the signalling hormones like luetinizing hormone and follicle stimulating for sex hormones as well as ACTH/adrenal corticotrophic hormone for adrenals.

 

[Galixie]

Have you been seen by an endocrinologist? Functional doctors can do testing for adrenals but the test aren’t recognized by mainstream medical, My gynecologist tested my hormone levels at one time.

A neurologist or endocrinologist but your GP should be able to run all your hormone labs and the signalling hormones like luetinizing hormone and follicle stimulating for sex hormones as well as ACTH/adrenal corticotrophic hormone for adrenals.

I haven't been to an endocrinologist in years. I'd have to find a new one. The ND who ran the am cortisol did run other hormone tests also. The only levels out of range were DHEA and testosterone. I believe the only one I'm missing is the ACTH test. She might order that one next. My follow up with her is on Tuesday. I'll be curious to find out what she thinks of my results.

The other factor, that I forgot to mention earlier, that makes me think there could be a potential link to something adrenal is that tumors can sometimes cause polycythemia. They usually raise EPO, but not always. So far I've not had any imaging done to rule out any tumors. The primary care doctor I saw in February was more interested in checking my lungs (which a chest x-ray showed were fine), and I don't have any other workups scheduled.

Technically, my cortisol wasn't low. The low end of the range was 6 and my level was 11. Probably not great for that early in the morning, but also not low enough that I'd expect a endocrinologist to do any further testing. I'm just not really sure how to effectively advocate for myself at this moment. I don't even know what to ask for.

 

[godlovesatrier]

I've also had low cortisol but the drs blamed it on my supplements, I often thing we should lie and not tell them what we are taking, that way they might actually look deeper. Truth be told the hospitals don't have the blood tests to look properly, so it's all a waste of time - depending on where you live that is!

 

[kangaSue]

A possible differential diagnosis could be renal Nutcracker Syndrome if you have other symptoms to match it. Not that there is any set sympton mix for it (they can be far more extensive than the medical literature suggests) but it can be a cause of blood pooling in the lower extremities, elevated RBC and WBC blood counts, reduced morning cortisol levels, and adrenal dysregulation due to increased venous pressures into the left adrenal gland.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5742442/
https://www.jvsvenous.org/article/S2213-333X(22)00355-9/fulltext
https://pubmed.ncbi.nlm.nih.gov/22573421/

 

[Galixie]

I had my follow up appointment. I didn't get to ask very many questions, so I'm still a bit puzzled. Here is what I was told about my results:

• I'm not perimenopausal yet (despite my age).
• DHEA can start going low as early as your 40's and that's "normal".
• But low isn't good, so it should be treated by taking a DHEA supplement (and by eating more protein and getting more exercise to help increase the low testosterone levels).

She doesn't think there is any signaling problem. She thinks it's all a normal ageing process. If it's so normal, why have I felt like I'm dying?

It feels like I'm in a no-win situation. If I take DHEA and the polycythemia shows up in my lab results again, I'll be told it's because I'm taking a hormone, and that I should stop taking any hormones. If I don't take it, I'll, presumably, continue to spiral downward.

Does what I've been told sound right? Is low DHEA and testosterone just a normal part of ageing? If so, how do people function?

 

[Judee]

About the hypovolemia, have you ever had IV saline?

Since you have no one who will test you for the actual blood volume maybe temporarily "pumping up" the volume with the IV saline would give you some indication if that's what is happening in your case. ??
Of course, it's only a temporary fix but still maybe as a "poor man's" diagnostic...???

There's also a cardiologist in the UK who does videos on POTs. Perhaps some of his videos would give you more ideas on which way to go.

??

 

[Galixie]

About the hypovolemia, have you ever had IV saline?

Since you have no one who will test you for the actual blood volume maybe temporarily "pumping up" the volume with the IV saline would give you some indication if that's what is happening in your case. ??
Of course, it's only a temporary fix but still maybe as a "poor man's" diagnostic...???

There's also a cardiologist in the UK who does videos on POTs. Perhaps some of his videos would give you more ideas on which way to go.

??

Yes, I've had hydration IV's before. I was on florinef for about three years, but came off of it because of side effects. After that I switched to hydration IVs. At first they also contained vitamins, but I really didn't seem to get any benefit from the vitamins, so eventually I just did lactated ringers (saline). I could, generally, go about a month between IVs before the dizzy spells would come back. But I have been off of those too since last July. I'm on the fence about restarting them, as they aren't covered by insurance and get kind of expensive.

Basically, I know I have hypovolemia and past doctors were on board with that diagnosis. But I have completely different doctors now, and none of the new ones want to consider it, so they act as if it isn't an ongoing problem. The ND I saw today is the only one willing to offer hydration IVs, but even she isn't especially convinced it's a problem for me.

 

[godlovesatrier]

so hydration IV worked once a month? It's a shame they are so expensive. But I might invest in a myers cocktail and see if that helps me out. I'd be ok with once a month to be honest to deal with some of these pots issues.