my weee test, pots/oi

[heapsreal]

You can have low blood volume and dehydration and hypertensive pots/oi (raises hand).





Well, why the heck not? It might be educational. [/quote

understand as i think i have hypertensive pots. The extra adrenal the body produces to increase bp cause the increase in pulse rate, although in some cases the increase in pulse rate helps compensate for people with low bp.
I wonder if sorting this out will lower adrenaline levels and help improve sleep??

 

[Kati]

9.5 L is a lot of urine indeed. Best of luck with your dr appointment.

 

[heapsreal]

I have a pathology request form for some hormones total and free testosterone, dhea, E2. Going to get him to add morning cortisol. Also getting my usual immune tests and full blood count etc which has sodium/potassium etc on it.

Anyone maybe enlighten me on any other tests i should look into for this issue. Aldosterone?? ANyother types of tests?
I have read that an MRI can also be done to rule out any tumors on pituatory etc and also a water deprivation test for diabetes insipidus??

cheers!!

 

[August59]

cfs/me has a neurological aspect with many having damage to the hypothalamus and pituatory gland that controls many hormones and other bodily functions like sleep. googling their functions u can see how autonomic dysfunctions occurr causing pots/oi, as well as diabetes and decreased insulin sensitivity, diabetes insipidus, digestion and many other functions which i thinks helps explains our wide and varied amount of symptoms.

Amen to that. I've got Metabolic Syndrome in 6 months with absolutely no change in diet or fluid intake. Somewhere between 3 years ago and 6 months ago I went from a very mild fatty infusion in my liver to very severe fatty liver and I eat pretty good and I drink nothing, but water for at least 2 years.

I finally got medicare, so I'm trying to find a good endocrinologist. We only have one in my town of 75,000 people and he is not worth a damn.

We actually have a doctor that just moved into the area that specializes in methylation. He trained with a lady doctor in Texas I believe.

http://neurosensorycenters.com/doctor/CV_Jackson.html

 

[August59]

I have a pathology request form for some hormones total and free testosterone, dhea, E2. Going to get him to add morning cortisol. Also getting my usual immune tests and full blood count etc which has sodium/potassium etc on it.

Anyone maybe enlighten me on any other tests i should look into for this issue. Aldosterone?? ANyother types of tests?
I have read that an MRI can also be done to rule out any tumors on pituatory etc and also a water deprivation test for diabetes insipidus??

cheers!!

When my testosterone dropped about 10 years ago, the first thing they did was an MRI on the pituitary gland

 

[August59]

Test is over 9.5 ltires in 24hours.
I think i see the problem??

If others think they pee alot it might be worth measuring 24hr urine output?? Possibly apart of the neurological aspects of cfs/me with dysfunction to the HPA axis causing this issue??

You could probably get a job at the fire department. That's a lot of piss!!! Your bladder is probably the size of a soccer ball!!

They checked my 24 hour cortisol and all I could muster up was 1.5 L. It had "0" cortisol and they repeated the test and it was still "0".

My 4x/day had my cortisol low in the morning and high for the entire rest of the day. They couldn't tell me why it was high 3/4 of the day and I had "0" free cortisol in a 24 hour test. they took no further action in relationship to this and could not answer it.

 

[August59]

I have a pathology request form for some hormones total and free testosterone, dhea, E2. Going to get him to add morning cortisol. Also getting my usual immune tests and full blood count etc which has sodium/potassium etc on it.

Anyone maybe enlighten me on any other tests i should look into for this issue. Aldosterone?? ANyother types of tests?
I have read that an MRI can also be done to rule out any tumors on pituatory etc and also a water deprivation test for diabetes insipidus??

cheers!!

Here is a test you might want to get and this webpage is from Australia!
http://www.labtestsonline.org.au/understanding/analytes/aldosterone/tab/test

 

[heapsreal]

i got my vasopressin nose spray from an online site yesterday. I wasnt going to try it until i saw my doc but well mm u know me. I gave it a shot and it stemmed the flow for a few hours, so i suppose its diagnostic too. I monitored my bp and HR and not much difference. Its going to take long term use to correct pots/oi stuff but worth seeing if it had an immediate effect on vital signs.

My understanding is that one has to try a few different methods to find what is best, so when i see my doc im going to ask him about desmospressin pills to start with and desmo is better and safer then vasopressin??

I also have noticed that my HR is high shortly after waking up, this is just lounging around doing very little and its hovering between mid 80s and 100, so i think theres pots issues worsening. the symptoms im noticing are headaches and cognitive issues which i think is due to poor cerebral perfusion. After some research im thinking of talking to my doc about clonidine as it can slow HR and lower BP by relaxing blood vessels and improving cerebral circulation plus it seems to have many other positive effects for cfs/me such as pain control, improved sleep, increase in growth hormone etc.

It seems that clonidine does have a rebound effect when one stops it so it needs to be tapered off. doses i have seen used are around .1mg pill, so i hope maybe a 1/4 of a pill will do the job as im abit concerned about possible rebound effects if i did have to stop for some reason but we will see.

Maybe once i have been on desmo for awhile my vital signs will improve etc and there will be know need for something like clonidine. All this i will talk over with my doc in a week.

Has anyone found using desmo has stopped the need for antihypertensive meds in pots/oi??

cheers!!!

 

[Kati]

That's kind of crazy shit, heapsreal. Get your butt to the dr and quick!!!! -says the nurse in me.


ETAardon my language, mods. But it was needed.

 

[heapsreal]

That's kind of crazy shit, heapsreal. Get your butt to the dr and quick!!!! -says the nurse in me.


ETAardon my language, mods. But it was needed.

Not easily done says the paramedic in me. More dangerous seeing any old doc. Id rather see someone who knows my hx and understands cfs/me. Im monitoring my vital signs regularly. I have the earliest appointment I can get. Most of what I have said above are things im going bring up with him. Thanks for your concern but I have a handle on it and a lack of trust for most doctors. I will wait to see my guy.

 

[heapsreal]

If I went to any old doctor with what I have I would 90 percent of the time get a diagnosis of anxiety and a prescription for xanax.
I will wait to see my doc who understands. My vital signs arent healthy but neither are they immediately dangerous. Many of us like to play a role in our own health and not have an understanding of what my doc is doing. I see nothing wrong with playing a part in my own health. Im not saying im a doctor but I also have two and a half decades of actively diagnosing and treating many different patients in emergency situations. Many smart people here thats good to get some advice and think processes through before seeing our docs. If we all just followed the first doctors advice we saw we would be locked up in looney bins.

 

[Sparrowhawk]

heapsreal been thinking about your post two or so above since last night -- takes me time to digest things sometimes, literally and figuratively. I'm constantly impressed with the spirit with which you go at this stuff. Good on ya (did I get that right?)

You have tons of medical experience as you point out above, and as someone was just saying on another thread those of us who have been doing this for a while journal our experience and we're all n=1 experiments on ourselves. It just struck me that I'd be overwhelmed discerning, given the number of inputs you have going right now, what was doing what to me. But then I'm easily overwhelmed these days.

All this to say you're an inspiration, and I hope it works out well for you with this doc appt and the new things you're trying.

Forza!

 

[heapsreal]

heapsreal been thinking about your post two or so above since last night -- takes me time to digest things sometimes, literally and figuratively. I'm constantly impressed with the spirit with which you go at this stuff. Good on ya (did I get that right?)

You have tons of medical experience as you point out above, and as someone was just saying on another thread those of us who have been doing this for a while journal our experience and we're all n=1 experiments on ourselves. It just struck me that I'd be overwhelmed discerning, given the number of inputs you have going right now, what was doing what to me. But then I'm easily overwhelmed these days.

All this to say you're an inspiration, and I hope it works out well for you with this doc appt and the new things you're trying.

Forza!

Thanks.
I think those of us who have worked in the health industry and have good knowledge of anatomy and physiology as well as pharmacology, have a good advantage of understanding this mess we are in, although it still takes time. Maybe we also see it quicker that doctors dont have all the answers and can see that look in their eyes when they are thinking that he or she is a nut job?? Brain power wise im just average but my willingness to get out of this crap hole illness might be abit higher then most.

ALso their are some really bright people on this board, even with cfs they are smarter then the average person. We all learn from each other and take whats relevant. I like to puts things out there so i can get some good feedback but also its out there so other people who are in the same situation can learn from it.

cheers!!

 

[heapsreal]

abnormal vital signs as in bp and hr generally occurr to try and compensate for something going on.

At a guess i think for me its low blood volume due to increased urine output, so fixing this possible vasopressin deficiency is the answer.

I think trying to increase blood volume by drinking more or iv fluids is just chasing my tail although it helps to a certain degree as well as replacing electrolytes that are lost.

I think treating the abnormal vital signs directly with beta blockers or antihypertensives could possible make things worse as its taking the bodies compensatory mechanisms away but in saying this, these treatments do seem to help many although it doesnt always fully makes sense. So its important to work with a doctor, although thats easier said than done.

Theres different mechanisms of orthostatic intolerance and its important to work out which mechanisms are involved in ourselves and its definately not straight forward in pots/oi.

cheers!!!

 

[SOC]

abnormal vital signs as in bp and hr generally occurr to try and compensate for something going on.

At a guess i think for me its low blood volume due to increased urine output, so fixing this possible vasopressin deficiency is the answer.

I've forgotten -- have you already ruled out aldosterone deficiency as a reason for low blood volume?

 

[heapsreal]

I've forgotten -- have you already ruled out aldosterone deficiency as a reason for low blood volume?

Not yet. See my doc In 2 days. I assuming its low adh as the 2 time of used the vasopressin nasal spray have stemmed the flow. I assume even if its not low desmopressin can be used as it used in children for bed wetting without having to have low aldosterone? ?

 

[Ruthie24]

Did I miss the update on your doctor's appt? Any news?

 

[heapsreal]

Adding extra test to my hormone test ie cortisol and aldosterone. Also urine osmolarity. Have a referal for a tilt table test but need to contact them to get cost as its not covered by our health care. So didn't really get any answers yet but wait till I get tests back. I don't see my doc again till end november.

Cant help but think apart of my high bp stuff has to do with sinusitis. When I treat with abx my bp and headaches settle. My hr still varies min 20 bpm from lying to standing. But hr is higher more regularly the last few months in the 90s at rest.

What I have started doing is doing once a day session on my new exercise bike. Just 10min and keeping heart rate less than 120. Hoping staying under 60% of max hr can help me avoid pem and slowly improve stamina as well as these orthostatic symptoms.

 

[Sushi]

heapsreal

Re: tilt table test, it could be expensive so I'd wait to see if other testing shows up anything that you can treat.

Don't forget the possibility that xifaxin could deal with sinus infections. I know that it sounds like a stretch, and I may be atypical, but it is magic for me for both sinus and migraines.

Sushi

 

[Sea]

Adding extra test to my hormone test ie cortisol and aldosterone. Also urine osmolarity. Have a referal for a tilt table test but need to contact them to get cost as its not covered by our health care. So didn't really get any answers yet but wait till I get tests back. I don't see my doc again till end november.

Where have you been referred to Heaps? One daughter had a tilt table test in the Neuroscience department at the Royal Brisbane hospital and another daughter had one in the paediatric cardiac unit of the Mater. Both were covered by Medicare.