Jump to content

Was Anyone's Pots / Dysautonomia Caused By Low Cortisol ?


Guest Hugues SC

Recommended Posts

Guest Hugues SC

Hi everyone !

I am new to the forum and as a first topic I was wondering: Has anyone found relieve from Pots / Dysautonomia symptoms by treating a low Cortisol situation ?

Two doctors I saw were convinced I had adrenal insufficiency, but the test results were not convincing, some results were normal and others were low (I have done several)

I felt partially better with adrenal medications, but it wasn't a dramatic improvement like the doctors thought.

Has anyone had a similar experience, or seen Dysautonomia improved dramaticaly when treating adrenal insufficiency ?

thanks :D

Link to comment
Share on other sites

Before POTS hit me 6 years ago, a "natural" MD did all the saliva panels that showed adrenal fatigue, but conventional testing did not show I had low adrenals. I know lately when I do labwork(blood) for my adrenals, my cortisol and ACTH are high-normal, so I don't know what's up.

Link to comment
Share on other sites

Guest Hugues SC

thanks for the replies!

it is similar for me, blood tests show middle-range or high-range cortisol, but saliva testing shows low cortisol. Some doctors say the only way to really know is to try the treatment and see if we feel better, but it is tricky with adrenals since the meds cause suppression, and it is not easy to go off meds once you have been on.

I am trying to rule out everything else before trying Cortef again ...

Link to comment
Share on other sites

I've been on and off Cortef several times in my life. And, with any surgery I have it given IV to support me and keep me from crashing. I can't say that it really made a whole lot of difference when I took it orally. But, I think since they figured out to give it to me during surgery - I've come through them a whole lot better than before with none. (Just hope I don't have to have any more surgeries. ENOUGH ALREADY!)

Issie

Link to comment
Share on other sites

Using cortef was the only thing that got me thru my POTS flare. I believe anyway. I had all the symptoms of Adrenal Fatigue - textbook. Actually more so than POTS originally. I was given the Cortef and immediately felt better. Got an endo visit to make sure that I wasn't Addison's and that Doc said I was totally crazy and was trying to kill my adrenals. He offered to do the adrenal testing but I had to be off cortisone for 2 weeks first - so off I went and I got sick. He said testing was normal but would not share results immediately. He said possibly blood volume issue and he would re-test Aldosterone and Renin. 2nd check of that he claimed I was normal. So I went right back on cortisone. In 4 weeks I felt 80% better but had a relapse coming off of it. I weaned way too quickly. When I went back on it took another month for me to gain my ground back. I am now more POTSY than adrenal fatigue. I have just started midrodine which I don't believe I would have ever tolerated if I hadn't calmed down my system with the cortisone. I am attempting to wean from it now (I've been on 5mg 3x/day since May 18th). I do feel very cautious about it causing suppression. The endo that I saw was crappy to me and thought I was crazy but I believe him when he says this is a serious drug. For me I just found the benefit to be so immediate and helpful to get me through a stage in which I was strong enough to trial other types of POTS treatments. I still don't exactly know what I'm dealing with as far as hyper or hypo or just straight up dysautonomia but i know my body is just not right. Just wanted to share my experience with using Cortef/Hydrocortisone. Sometimes the benefits at some point out weigh the risk??? And at the time that's personally where I was. Take care and good luck. ~ T

Link to comment
Share on other sites

Guest Hugues SC

Hi issie, it's great that Cortef helped you get through surgeries, must be tough to have several :o

thanks for sharing Relax86, seems like for you a lot of it is related to adrenals, I think you're right to say the benefits can outweight the risks. Although it can be a big decision to start on replacement for good. I think Endo always think of huge pharmacological doses of Hydrocortisone and do not consider that people can be borderline adrenal insufficiency or borderline addison's and benefit from a physiological dose. If you tried something and it worked, this is probably a good indicator that you needed it, probably a better indicator than tests ....

I wanted to ask you: when you take HC, do you take Florinef also ? or as your body adjust with cortef alone and manage to make enough aldosterone ?

Taking cortef alone is the only combination that I did not try, I always took florinef along with it, I think maybe I did not need it (florinef) and would feel ok on cortef alone

thks!

Link to comment
Share on other sites

I did not tolerate florinef at all. But I was super flared up when I was prescribed the florinef. I got better with cortef, salt, moving (little by little), water and a little gatorade. I got rid of the gatorade and recently replaced with coconut water. I just started midrodine this past Saturday and I have quite a bit more energy as my BP was only getting so far with what I was doing. The midro gets me to 125/82 and seems to lower my HR and I feel energetic and mentally clear. The down side is headaches, head pressure and when this drug wears off (for me about 6 hours) I crash down off of it which feels pretty bad. But right now the benefit out weighs the downside and I pretty much hold that as my motto. At the same time I am trying to wean from the cortef. I've been doing just a 1/2 pill as my 3rd dose since Saturday. I have ear pain - which has always been my very first clue to my symptoms - which is slowly returning....so I"m staying on this reduced dose for about 2 weeks before I try and reduce again. I feel pretty strong about how the cortef supported my partial recovery thus far. And as it stands for me right now - I wouldn't change a thing. Good luck to you.

Link to comment
Share on other sites

Guest Hugues SC

thanks again! I tried florinef alone lately (without cortef) and it did not feel right for me either. I think there is a point when adrenals can make enough aldosterone but can't make enough of both cortisol and aldosterone.

Hope things keep improving for you !

Link to comment
Share on other sites

My theory is that POTS is not caused by low cortisol levels, but rather low cortisol levels are actually a result of POTS because we burn through our adrenals just by standing. My saliva test showed low cortisol and nearly non-existent progesterone. I guess when you run out of cortisol your adrenal glands steal progesterone to make up for it. So I feel like treating the low cortisol levels would definitely have an effect on overall energy, but it wouldn't solve the route cause. In my mind, it would actually perpetuate the problem, but anyway, that is just my THEORY. When I took desiccated adrenal from Standard Process, as recommended by my ND, I did feel slightly better.

Link to comment
Share on other sites

Here's my experience with POTS and Adrenal issues.

When I first got sick in 2005, I was found to have severe POTS. On a tilt table at Cleveland Clinic, within seven minutes, my bp dropped to 26/14. Yeah, POTS.

But, for years after, I was exhausted to the point of being in a wheelchair at times, and bedridden a lot of the time.

I was given two ACTH stim tests during that time, both of which I passed GREATLY. By greatly, I mean, there is a normal range your cortisol is to reach after being given the ACTH. I exceeded those ranges by over 30 points each time. I was told this was great, that my adrenals were working exceptionally well. I continued to be terribly fatigued, with severe abdominal pain all the time, etc.

After being treated for mast cell disease with some medication I can't remember now what it was called, I went into terrible reaction. I was hospitalized, no one knew what was going on. Finally, I nearly died on my bathroom floor one morning, and was ambulanced to my local ER. Long story short, I went into adrenal crisis, I nearly died, and I was diagnosed with Addison's. This, after two normal ACTH stim tests.

I joined a support group out of the UK. I hate to say it, but the people in the UK know a heck of a lot more about Addison's and adrenal issues than US docs (in my opinion, what I've experienced personally).

This group I belong to is great. I asked them about the passed stim tests, and the head of the group, a guy who is a doctor of biology and an Addisonian himself, replied: When given an ACTH stim test, the idea is to stimulate the adrenal glands. Yes, if there is some life left in your adrenals, they will be stimulated, but if they are slowly burning out, they will overshoot, hence the high cortisol markers.

Just like a lightbulb or a water heater over lights or over heats before it burns out completely, that's what an exceptionally good ACTH stim test level is showing. Your adrenals are burning out. If your saliva tests are showing fatigued adrenals, you have an adrenal problem.

Hydrocortisone is what I take three times daily. I started on prednisone, which did nothing but keep me alive. I felt awful on it. I couldn't tolerate Florineff either. I was switched over to Hydrocortisone, and it took two months for me to find that I actually felt better. I could get out of bed each day, clean house, go to the store, cook..... It was amazing. I was an active person again. Was I completely healthy? Heck, no. I have too many other health issues to think this was my miracle cure. But, I was better, so much better.

Am I saying this is everyone's problem here and that hydrocortisone or some other adrenal treatment is the answer? No. I'm not that narrow minded. But, I do want to caution against taking test results at textbook value, against what you're experiencing.

My group told me, "Be careful because doctors will tell you that now that you're being treated for your Addison's, you'll feel totally fine and be able to live a normal life. That simply isn't true. You will never feel healthy, you will always struggle, but now you have the medication to help you through all that and keep you going." That's the truth. Just because you don't feel totally healthy on steroids does not mean you don't have an adrenal issue. It means you have an adrenal issue, that's why you don't feel well and won't ever feel totally healthy, but the steroids are keeping you going.

People don't show low levels on an ACTH stim test until your adrenals are 90 % gone. By that time, you're lying on your bathroom floor, in crisis, like me.

If you are needing cortisol to make you feel better, you have an adrenal issue. If you need cortisol to get you through surgery, you have an adrenal issue.

Oh, and there are two kinds of Addison's. Primary and Secondary. Primary is an issue with the adrenal glands themselves. This is a more rare form of Addison's. Secondary is a form of adrenal disease that is caused by something other than the adrenal glands themselves, such as chronic steroid use for asthma or lupus, a pituitary tumor, a problem with the connection between the pituitary and the adrenal glands, etc. I have secondary. Thus, my aldosterone level is fine. Those with Primary Addison's have low aldosterone levels. Those with Secondary have normal. Why? Because Primary affects the adrenal gland itself and lowers the aldosterone level. Secondary doesn't.

Also, Primary Addisonians have the golden skin. This is due to ACTH. Their ACTH is actually high, causing them to go bronze. Secondary people have low ACTH, thus, their skin is a normal color.

Truly, I think the saliva tests are more indicative of adrenal issues than our conventional testing, because they can pick up sliding adrenals whereas our stim test only shows, as I said, when the adrenals are gone 90%, and this is a dangerous place to be.

I don't want to alarm anyone here. That is not my purpose. I just want everyone who has a concern or question about adrenal function to be careful, learn about adrenal disease so he or her can be as informed as possible, etc. Why am I so passionate about this? Let me tell you why.

For years, I had docs telling me this wasn't adrenal, even though I showed low ACTH and low cortisol on blood tests, couldn't get out of bed, had severe abdominal pain constantly, etc. I would crash continuously after each surgery, I was a mess. The only reason I even knew about Addison's and its crisis symptoms was because another support group, one for mast cells, talked about crisis symptoms because many of those people are on steroids and are at risk of going into adrenal issues. I ran a copy of the symptoms of Addison's crisis one day, just in case, since I had so many of the symptoms, yet docs were saying no.

Well, low and behold, one day, I go to the bathroom and nearly die from Adrenal crisis. If it hadn't been for that list of symptoms, I would have pooh poohed my symptoms off and told myself it was just POTS, or another anxiety attack. And, there I was, dying, and doing just that. My husband called a rescue squad after I had no blood pressure. I'm blessed to be here.

Please, if you have any questions about all this, PM me. I would love to help someone who is truly having an adrenal issue get better and not have to go through the **** I did.

I can also direct you to the Addison's group I belong to. They're a great bunch and very knowledgeable about this condition.

Oh, and please don't think if you have adrenal issues you are going to go through crisis, like I did. Honestly, crisis is very rare. I've been in crisis, severe crisis, once. I've been in adrenal failure several times. There is a difference. In crisis, you are dying, in failure, you just feel like you are.

Again, I don't want to scare anyone. I'm just telling you, true adrenal issues can be serious, and aside from that, getting that issue under control can make you feel better. Will you ever feel totally well? No. I'm sorry to say, but no.

Oh, and many who have thyroid issues also need the adrenal glands treated, as those go hand in hand. Most docs won't look for this or treat it. That's why many people on thyroid meds, who actually do need them, don't get better. Because if they have an underlying adrenal issue, as well, that's not being treated, the medication for thyroid will actually make the adrenal problem worse, thus, they feel worse, not better. So, what does the doc do, instead of looking at the adrenals? He or she ups the thryoid medication, then scratches his or her head, wondering why the patient still feels lousy.

Sorry to ramble. It's just that adrenal issues are so often ignored or misunderstood, leaving too many people to suffer and, as in my case, at risk for serious episodes.

Again, anyone wishing more information, you can PM me if you want. I get really concerned when people think they may be having adrenal issues, or tests are showing they are, and they're not getting help.

Lindajoy

Link to comment
Share on other sites

Guest Hugues SC

Hi Klgpdx !

I agree that a lot of things will increase the need for cortisol, and that sometimes what might work is treating all the things that increase the demand in cortisol. This theory makes a lot of sense.

Personally, I haven't had much success with this approach, unfortunately ... I tried correcting a lot of issues I have, like the whole digestive aspect, the lifestyle approach like avoiding stress, etc.. , getting rid of chronic infections, balancing thyroid hormones, etc . But I kept getting worse

I think it's always the chicken before the egg thing, and that the goal is to find the one thing that improves our symptoms the most. It might be something different for everyone

Link to comment
Share on other sites

Guest Hugues SC

Lindajoy,

i'm sorry to hear things got really severe for you, and happy things got better !

I have read and heard a lot about how tests can be unreliable for adrenal diagnosis, but your story is the most shocking. I have felt like my problem is low adrenals for a long time. Nothing really showed obvious adrenal insufficiency, but I keep feeling like everything is wrong, and that no matter what I try, it is useless ...At first, the things I tried helped a little bit, but it did not last. Now it seems anything I try throws my body out of control.

And it's funny, I just did two ACTH stim tests, a few months ago, and I was told things are fine with my adrenals. Maybe it was the classic situation: i'm in front of an Endo telling me everything is fine, but there is a severe problem with my adrenals ...

But I am still wondering HOW is it possible for adrenals to have been struggling for years and still manage to raise a decent level in a blood test. :o

I would really like to live my life without having to take HC all the time, and take it for life, but I also can't live a minimal decent life, the way things are actually, so I will probably try it ...

Link to comment
Share on other sites

Hey, Hugues.

Just want to address your question about how the ACTH stim test could show normal when your adrenals may not be. This is how it was explained to me since this was my case and I wondered the very same thing.

According to my Addison's support group leader, who I trust with this stuff implicitly: Until your adrenals are at 90% gone, they still function to try to keep you going. How the ACTH stim test works is that ACTH is given--it's a hormone that is produced in the pituitary which functions to stimulate the adrenals. Thus, when it's given artificially, your adrenals are stimulated. Unless your adrenals are 90% gone, they will stimulate, and they can look normal because they are functioning. Now, just because they are functioning during this test does not mean they are going to work like normal during normal working hours.

It's like that light bulb scenerio I gave you earlier. Light bulbs will burn very brightly right before they burn out. They are slowly losing juice, but you look at them, and you think, "Oh, they're fine, look how bright they are." But, they're really not. They're about to burn out. Same with adrenals. Until they are at 90% gone, they will still try to "burn bright," but they are actually burning out. Eventually, they may just do that.

Does that make sense to you? I hope so.

Also, about taking corticosteroids for the rest of your life. When someone takes them for replacement of adrenals that are failing to work, they usually don't have the terrible side effects as if you are taking them at exceedingly high levels for let's say lupus or arthritis. We're taking the dosage that our bodies would be putting out there naturally, so our side effects are usually minimal, esp. if you're taking HC, as it is the steroid that's closest to our own natural steroid, so our bodies do pretty well accepting it.

Take care.

Lindajoy

Lindajoy

Link to comment
Share on other sites

Hi, Issie,

I think adrenal exhaustion and Addison's, or adrenal failure, are not quite in the same ball park. Adrenal exhaustion can lead to adrenal disease, like Addison's or adrenal failure, but it doesn't have to. And, adrenal fatigue, or exhaustion, usually is not life-threatening like Addison's can be. It definitely is life altering, but not life threatening unless it leads to failure.

Adrenal fatigue is just that: my adrenals are straining because they're overused, they're tired, they're just not acting up to par. Resting, taking supplements, adding salt to your diet to keep your bp up, etc., can all help ease, and even eliminate, exhaustion. With Addison's, there's a serious underlying cause for those adrenals to begin losing power: a problem with the adrenal glands themselves, a pituitary tumor, a physical problem with the lines that connect the pituitary gland and adrenals, etc.

But, if you think your adrenals may be involved in your ill health, even if they find "just" fatigue, it should be treated and taken seriously, since your adrenal glands are your body's little energy providers, and without them, you cannot survive.

Take care.

Lindajoy

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...