Vasopressin/ADH ... My Story

[xks201]

So as you all know I have been posting in my signature that I have been cured. I attribute all of this to hormone therapy. Hypothyroid, hypocortisol, Vasopressin deficiency, low aldosterone, low testosterone. And probably dhea deficiency during athletic stress.

I have enjoyed weight lifting and tend to push myself in the gym quite a bit. Perhaps the reason it took me a long time to cure myself (other than the fact that 19/20 doctors I dealt with were totally clueless including endocrinologists), is that ADH is such a tricky hormone to test and regulate.

First of all I would say of 20 endocrinologists maybe one skillfully knows how to test for diabetes insipidus. The crazy thing is that I had a private test done for ADH levels and mine came back 3.5 in a 0-4.0 reference range. Yet I am still pissing all day. I used to drink gallons of water (literally) everyday for a period of months and my thirst mechanism finally gave out. But I continued peeing 2x the volume I took in.

Another member here suggested I measure my urine volume. So I did that and every time my output was twice my input through the course of a day. It doesn't take an Einstein to realize that day after day this is going to produce chronic dehydration.

There are several forms of DI, yet apparently my body is capable of making ADH, yet apparently I respond to vasopressin therapy.

It is tricky because I also have an aldosterone level of 0. So if I take too much vasopressin I am at even greater risk than most for depleting sodium. So I really have to watch my fluid intake after taking half a pill of vasopressin in the AM and before bed.

Drug toxicity and dizziness have been some of the most salient problems of mine next to my frequent urination. I will take a drug in a quarter of an amount most people will take and will get all of the side effects. lol I attribute this to hypovolemia causing my liver not to function properly.

I cannot emphasize how important it is to measure your urine volume, because if you are constantly pissing out more than you are taking in you are doing to be chronically fatigued.

Most endos would see an ADH reading of mine and dismiss me. Though it could have been a mixed up test I suppose. A more accurate way to measure for DI is probably comparing the solutes (electrolytes) in the blood to that in the urine at the same time. (thanks to CBS for sharing this)

Vasopressin is tricky though because you can also drink too much water and end up just as fatigued on it.

This could also explain my high histamine/low histidine levels as histamine triggers ADH release.

 

[xks201]

I have also listed in my signature the most helpful treatments for me personally.

 

[Googsta]

Just to update others as you have removed your signature - you say have been cured since May, this year i.e one month ago.

I do not consider someone who continually needs medications as 'cured'.
The correct term for that would be successful treatment, which is great.

I just began walking a kilometer this week, last week I was using a walker, the week before I was in a wheelchair.
I am not cured.
This was not due to any magical supplement or any ordinary one either.
This is typical of the relapsing/remitting nature of my illness which I have had for 11 years.
How many times have I thought I was cured!

Please, perhaps replace the definition 'cured' with 'vast improvement' or other such description.

 

[Sushi]

So as you all know I have been posting in my signature that I have been cured....

Cured??? Still taking treatment???

Doesn't compute. I agree with Goosta.

 

[August59]

Did you ever take aldosterone? I think you said your level was "0". I had read where some people that had low aldosterone levels did not respond to Florinef, so they ended up having to order transdermal natural aldosterone from a compounding pharmacy in Canada

Just as a kind of off topic question - Do you have any hearing problems? The reason I asked was that there was a ENT doctor somewhere had some patients that was losing their hearing (sensinueral?) unilaterally and also found out that there aldosterone was very low. Transdermal aldosterone restored either partial or all of their hearing loss level of restoration seemed to coincide with how long they had been hearing impaired. They were trialed with Florinef without any effect on their hearing. I believe there was a statement made about the transdermal aldosterone helping with Vertigo and Ménière’s disease. It appears that aldosterone has far reaching effects on fluid and electrolyte levels even up into the inner ear.

Congratulations on the 395 lb Bench Press as I tried very hard about 15 years ago to break the 300 lb barrier, but 290 was as close as I ever got. I bet I couldn't break the 150 lb mark now. Glad to here about your recovery and certainly understand the doctor frustration. Endo's don't care about anything but diabetes, thyroid and testosterone. Order the labs, write the script and take your money.

 

[xks201]

August59, I was stuck at like a 175 lb bench press until I got on hormones. And I read of a doctor doing that but I was unaware of the transdermal application. I know it can improve hearing. I did get tinnitus often - buzzing in my ears. That seems to have gone away.

 

[TheMoonIsBlue]

What happened to Soil Based Organisms, and Mutaflor? A few weeks ago you were saying that CFS is caused by lactic acid poisoning and the cure was Mutaflor. In fact, that was your signature! I cant follow your posts as they are continually changing about what cured you, was it Mutaflor that cured you? Or hormones? Are you cured because I just saw a post about your problems with POTS, or OI, I cant remember.

Am I curious, are you here to gather research for some sort of college thesis or something else? This is not an accusation, I honestly am baffled by a lot of your posts because you said you were cured a month ago but attributed it to something totally different than what you are now saying.

You seemed to be saying just a few weeks ago we were all sick because of our GUTS and gut problems?

I am curious as why your signatures also contains so many bold statements like "this is the problem, this is the solution". Period. Someone could put in their signature that "CFS can not be cured by hormone therapy, because if hormone therapy cures you, you had a hormonal problem to begin with and not CFS"


I hope no one thinks this is rude? Not my intention.

I really would like a clarification about your previous statement about Mutaflor..... and lactic acid poisoning being the root of CFS. You no longer even mention lactic acid in your signature. Did you change your mind?

 

[SOC]

I, like TheMoonIsBlue, am confused. I went back in the threads to see if I was remembering poorly. What I saw was a flood of posts and polls over 2 months giving a continually changing story.

Near the end of April, your theory was that CFS is histidine depletion.

In May, CFS was bacterial infection, and later it was lactic acidosis from probiotics. By the end of May you were cured and hawking an e-book about how to cure CFS.

Then in June, some symptoms start showing up, as well as ongoing medications to control them, which suggests that you are not, in fact, cured.

Then on Jun 11, you're cured again and you "attribute all of this to hormone therapy."

This story is, at the very least, extremely confusing. You've warned us and you've lectured us, but throughout there's been a lack of consistency about what exactly your message is. I, for one, would greatly appreciate a clarification of your message.

The History
April 22
Thread title: My Theory - Histidine Depletion

May 2
Thread title: CFS is a Bacterial Infection

May 21
Thread title: Lactic Acidosis from Probiotics
From thread content:

YOU HAVE BEEN WARNED. It is the cause of my CFS

May 23
Thread title: Prove my cfs theory – Drink Milk
From thread content:

Drink 4 glasses of milk with some carbs and post in this thread what happened. If your fatigue got exponentially worse, thank me for solving your problem.

May 27
Thread title: Cured Myself After 4 Years of CFS

June 5
Thread title: Itching and High Appetite Symptoms
From thread content:

I know I am posting a lot here of questions/polls similar to this but I am honestly just trying to wrap my head around several possibilities here with regards to CFS.

June 6
Thread title: [Re: POTS] Has Anyone Cured Themselves of This?
From thread content:

Mine is particularly bad unless I take low dose klonopin and one pill of florinef.

June 11
Thread title: Vasopressin/ADH ... My Story
From thread contents:

So as you all know I have been posting in my signature that I have been cured. I attribute all of this to hormone therapy. Hypothyroid, hypocortisol, Vasopressin deficiency, low aldosterone, low testosterone. And probably dhea deficiency during athletic stress.

 

[TheMoonIsBlue]

Great summary SOC ....I am not the only one confused by these very conflicting statements.

Hopefully xks will bring some clarification to this situation.

 

[SOC]

Why do you say so? I'm trying to clear up what appear to be some logical inconsistencies.

 

[xks201]

If you have a gut infection, clear it up, otherwise boost your hormones. Bottom half of the reference range is usually a bad place to be when it comes to hormones.

I DID BOTH. Everything I said to do I have done. I now have lactic acid utilizing bacteria in me. I have done a lot. And I have posted all of it on here.

 

[SOC]

If you have a gut infection, clear it up, otherwise boost your hormones. Bottom half of the reference range is usually a bad place to be when it comes to hormones.

I DID BOTH. Everything I said to do I have done. I now have lactic acid utilizing bacteria in me. I have done a lot. And I have posted all of it on here.

Thanks, that adds some clarity to the situation. Sadly, there's no cure here. Nor is there a definitive answer to what causes CFS or ME or ME/CFS.

Many people have taken hormones and worked on their gut problems and still have ME/CFS.

As you pursue your investigations into causes of and treatments for ME/CFS, I suggest that you also consider the many infections that show up in PWME (EBV, HSV, HHV-6, Parvovirus B19, Coxsackie viruses, Chlamydia, and others I've forgotten at the moment). Along with that you might want to look into the immune dysfunctions that have been discovered in PWME.

BTW, I'm not following any kind of methylation protocol.

 

[xks201]

Sorry guys today was a bad day. My doctor basically refused to renew some hormones due to him being out of state and me being unable to travel 500 miles at the drop of a hat and on top of that I had hundreds of dollars on a scratch off card that I could not read when I scratched off the ticket so I had to travel 25 miles across town to get a copy of the receipt and the list goes on. I apologize if I am being rude to anyone...very frustrating when you run out of thyroid and cortisol. On top of that my body isn't converting the T4 to T3. Changes the signature...lol.

One thing is for sure I do not handle stress well when I don't have thyroid meds...

 

[SOC]

Sorry guys today was a bad day. My doctor basically refused to renew some hormones due to him being out of state and me being unable to travel 500 miles at the drop of a hat and on top of that I had hundreds of dollars on a scratch off card that I could not read when I scratched off the ticket so I had to travel 25 miles across town to get a copy of the receipt and the list goes on. I apologize if I am being rude to anyone...very frustrating when you run out of thyroid and cortisol. On top of that my body isn't converting the T4 to T3. Changes the signature...lol.

One thing is for sure I do not handle stress well when I don't have thyroid meds...

Yes, keeping up with a serious illness can be quite a job in itself. Doctors, by law, cannot prescribe for you if you don't see them regularly (at least once a year). I imagine your doctor is trying to stay within the law and also watch out for your health by not prescribing hormones without having the appropriate tests done. Good doctors don't dole out potentially risky meds without seeing and testing the patient.

You need to consider that in addition to your not being able to travel 500 miles at the drop of a hat, your doctor can't fit you in for an appointment at the drop of a hat, either. If your doctor is an ME/CFS specialist, you likely need to make appointments months in advance.

One of those things you have to learn as an adult is to plan ahead for things. I still have to remind my 20yo that she needs to arrange doctor appointments before she runs out of meds. If your meds are that critical to your well-being, you might want to consider scheduling your following appointment while you're in the office the next time you see the doctor.