How Metformin Works in the Mitochondria Studied.

[lansbergen]

Thanks. I copied that info and printed it for myself. Anti-oxidants in my case do help me a little bit..eg high dose C. So maybe you've just explained to me why. (Vit E thou I havent noticed that helping me). I havent tried the other things you mentioned

Maybe you need to increase your fat intake. When I asked the animal food producer they could and would increase Vit E they came back to me to tell me if they did they had to increase the fat. I was not happy with that but tried it anyway. To my suprise the animals did not get too thick.

 

[taniaaust1]

Telling whether Dysautomnia vs Low blood volume is causing POTS is hard work and the cause of a lot of debate, most doctors assume it's always one of the other.

Also Aldosterone (anti-urination hormone) is made either from Cortisol or the same precusrors (two methods). Hence low Cortisol can equal low Aldosterone = cause of POTS = cause of further problems.

Which cortisol test (time of day) was not low, and was it high or normal? Has any proper investigation been done into why you are producing so little Cortisol? Has Aldosterone been checked?

The aggression that comes with Hypoclyemia is caused by Adrenalin and/or Cortisol production when the body tries to correct the problem not by the hypo itself. If you are producing far too little Cortisol and Aldosterone, your body may be producing masses of Adrenaline to compensate (mine does) thus causing your rages.

The insulin spikes with sugar are caused in the bowels not the blood stream, if you dissolve it under your tongue, you avoid that problem. Following the teaspoon of sugar with something solid (cereal with bran for example) will help take pressure off your adrenals. The repeat as necessary also matters here, just keep on the sweet stuff until blood sugar settles, then follow up with the stodgy stuff. If you feel like hell with all carbohydrates that could be your SOD function.

Give me as much data as you can about your BP etc etc... and let's see if we can't sort this out.

I had 24hr cortisol testing done by urine (one collects it over 24hrs and then its tested), 3 times now.
1st time result was 46 (normal range is 50-350) . I had it retested one mth later cause doctor told me it was low cause I wasnt exercising.. so I exercised for the few days before the next test. .. I was in agony.. and had it retested
2nd time result was 51 (normal 50-350).. so yeah it was JUST then in normal range.. it hardly increased at all.
A third time.. in another year... I had it done it was out of range again (I didnt exercise or cause myself bad pain that time).

Interestingly.. my blood cortisol tests (which the doctors would only take in the morning).. is mid normal range. So this must mean that my cortisol must very severely ditch at other times other then the morning to get the out of range 24hr results.

No investigation was done on why I have abnormal 24hr urine cortisol.
...............

My Aldosterone level I dont know how that is. What kind of test is that tested by?
.........

, your body may be producing masses of Adrenaline to compensate (mine does)

Yeah.. I have out of range high noradrenaline levels. They actually threw out 3 of my adrenaline or noradrenaline tests as the lab didnt believe the results and said it must be a test error (2 different labs done this!). Yeah right.. 3 times straight at 2 different labs .. there is a test error. I dont believe it. I think my results were just so wacked out they couldnt believe they were true. At least the fourth test I did get results back showing it was above normal range.

Thanks I've never thought before how it all could be triggering off my adrenaline and hence huge mood swing with a diet breach. It would make sense that someone with crazily high unbelievable adrenaline levels at times would have a major mood swing during a huge spike.

...........

The insulin spikes with sugar are caused in the bowels not the blood stream, if you dissolve it under your tongue, you avoid that problem. Following the teaspoon of sugar with something solid (cereal with bran for example),

I can get a bad reaction to it in only 15-20mins..so it wouldnt be in my bowels by then. I very clearly reacted to chickpeas.. I had a bowl of them after I didnt realise they were high in carb. I ended up smashing my boyfriends car window about 20 mins after I ate them, my reaction to those was crazy.. I went off for no reason at all except for the carbs. (Unless Im allergic to them?? Im going for allergy testing next week). But I also get sick that fast after other diet breaches eg if I have 3 pieces of KFC chicken.. Im not well, I assume due to the carbs in the batter.

Give me as much data as you can about your BP etc etc... and let's see if we can't sort this out.

My BP all my life was very low eg I'd fall down if I stood too fast. 80/60 when I first got ME and before or lower. It was very low for the first few years of the ME at least.. (I then had a ME/CFS remission.. somewhere after this remission when I got ME back.. it all changed.. and somewhere among this I also developed POTS)..

I went to having high BP for 18mths.. well my dystolic was high every time the dr tested it eg 95-98. This continued for a few years and the dr considered hypertension drugs but I guess didnt cause my systolic was fine.

After that.. things changed again. Now my BP was highly unstable. It is very low at night down to around 62 dystolic (62/86).. it thou can thou go as low as 40 suddenly when stand (but only for a moment, its hard to catch it doing this) .. or it can jump up to 138 when standing (this is my lower reading!! dystolic). 180 systolic/138 dystolic. is my highest readings Ive seen.. I dont take it often so it could be going higher. I ended up being sent to a special eye doctor as I had on scan showed up bulging eye discs.. I think it was probably due to high BP at the time.

I can get the high orthostatic BP issues with or without the POTS at the same time. I also get narrowing of the pulse pressure at times ..Ive seen that several times down as close as 7. (I have all 5 autonomic issues Dr David Bell talks about in ME/CFS people so when I stand.. one never knows what my body will do).

 

[taniaaust1]

Maybe you need to increase your fat intake. When I asked the animal food producer they could and would increase Vit E they came back to me to tell me if they did they had to increase the fat. I was not happy with that but tried it anyway. To my suprise the animals did not get too thick.

Would that be a good idea if one has bad high cholestrol? (which isnt being controlled as I reacted badly to statins). Im kind of a heart attack waiting to happen here (one side of my family all have had heart attacks from the age of 30 on).

 

[lansbergen]

Would that be a good idea if one has bad high cholestrol? (which isnt being controlled as I reacted badly to statins). Im kind of a heart attack waiting to happen here (one side of my family all have had heart attacks from the age of 30 on).

Sorry, I do not have enough knowledge of that.

 

[Leopardtail]

I had 24hr cortisol testing done by urine (one collects it over 24hrs and then its tested), 3 times now.
1st time result was 46 (normal range is 50-350) . I had it retested one mth later cause doctor told me it was low cause I wasnt exercising.. so I exercised for the few days before the next test. .. I was in agony.. and had it retested

Not with results that low (exercise issue), you need a better doctor.

2nd time result was 51 (normal 50-350).. so yeah it was JUST then in normal range.. it hardly increased at all.
A third time.. in another year... I had it done it was out of range again (I didnt exercise or cause myself bad pain that time).

Interestingly.. my blood cortisol tests (which the doctors would only take in the morning).. is mid normal range. So this must mean that my cortisol must very severely ditch at other times other then the morning to get the out of range 24hr results.

No investigation was done on why I have abnormal 24hr urine cortisol.

Inconsitency is a known issue with ME, our adrenal glands get their own personal PEM. You will never get your doctor to admit it though.

...............

My Aldosterone level I dont know how that is. What kind of test is that tested by?
.........
Yeah.. I have out of range high noradrenaline levels. They actually threw out 3 of my adrenaline or noradrenaline tests as the lab didnt believe the results and said it must be a test error (2 different labs done this!). Yeah right.. 3 times straight at 2 different labs .. there is a test error. I dont believe it. I think my results were just so wacked out they couldnt believe they were true. At least the fourth test I did get results back showing it was above normal range.

Thanks I've never thought before how it all could be triggering off my adrenaline and hence huge mood swing with a diet breach. It would make sense that someone with crazily high unbelievable adrenaline levels at times would have a major mood swing during a huge spike.

...........

I can get a bad reaction to it in only 15-20mins..so it wouldnt be in my bowels by then. I very clearly reacted to chickpeas.. I had a bowl of them after I didnt realise they were high in carb. I ended up smashing my boyfriends car window about 20 mins after I ate them, my reaction to those was crazy.. I went off for no reason at all except for the carbs. (Unless Im allergic to them?? Im going for allergy testing next week). But I also get sick that fast after other diet breaches eg if I have 3 pieces of KFC chicken.. Im not well, I assume due to the carbs in the batter.



My BP all my life was very low eg I'd fall down if I stood too fast. 80/60 when I first got ME and before or lower. It was very low for the first few years of the ME at least.. (I then had a ME/CFS remission.. somewhere after this remission when I got ME back.. it all changed.. and somewhere among this I also developed POTS)..

I went to having high BP for 18mths.. well my dystolic was high every time the dr tested it eg 95-98. This continued for a few years and the dr considered hypertension drugs but I guess didnt cause my systolic was fine.

After that.. things changed again. Now my BP was highly unstable. It is very low at night down to around 62 dystolic (62/86).. it thou can thou go as low as 40 suddenly when stand (but only for a moment, its hard to catch it doing this) .. or it can jump up to 138 when standing (this is my lower reading!! dystolic). 180 systolic/138 dystolic. is my highest readings Ive seen.. I dont take it often so it could be going higher. I ended up being sent to a special eye doctor as I had on scan showed up bulging eye discs.. I think it was probably due to high BP at the time.

I can get the high orthostatic BP issues with or without the POTS at the same time. I also get narrowing of the pulse pressure at times ..Ive seen that several times down as close as 7. (I have all 5 autonomic issues Dr David Bell talks about in ME/CFS people so when I stand.. one never knows what my body will do).

I am suspicious of how accurate urine tests are in the context of ME due to the very high urination most of us suffer.

The issue you need to deal with is what is causing the excessive adrenalin. How you been referred to a professional endocrinologist who understands this stuff half well? ME hormones are beyond most specialist endocrinologists and beyond almost all GPs.

There are several things that could cause high Adrenalin, it has many uses, but they include: very low blood pressure, immune response, severe hypoglycaemia, groundless over production due to a fundamental issue with your HPA axis.

Given your OI and POTS, you need first to get Aldosterone and Vasopressin checked (not the electrolytes, they only work if a single hormone is too low). A water deprivation test could well show false positive results in ME due to the same issue as Cortisol (though it's better than nothing). On the other hand if your electrolytes do show a clear discrepancy between Sodium and Potassium levels, that would indicate something.

Aldosterone is a hormone that stops you urinating, if you have too little of it, you end up with low blood volume, OI, and possibly low Sodium high Potassium. If your adrenal glands are messed up it could be as badly affected as your Cortisol. It (in my view) has to be done as a blood test to be accurate.

You should also check the new Julia Newton thread on OI/POTS, she has been researching the area?

Sugar can get beyond your stomach and into blood in seconds. The Insulin response to sugar begins almost as soon as the sugar gets into your blood stream but continue longer (hence the low blood sugar).

If the urine stuff comes up negative, you should be looking into either: Insulin levels, or imunolical referral.

Hope that helps.

 

[heapsreal]

@taniaaust1 metformin and other measures to try and improve insulin sensitivity can help improve cholesterol levels.
Have a google of bromocriptine diabetes circadian rythym. short note on this is that they are say circadian rythym can cause reduction in insulin sensitivity and bromocriptine which increases dopamine can help with ones sleep wake cycle etc and improve blood sugar control. its worth a look??

 

[cigana]

Sadly neither methyl-b12 or other methylating supps seem to help alleviate the symptoms. It's my first day off metformin, and I can't remember the last time I felt so weak!

Anyone got any other immunomodulator suggestions?

Nexavir normalises all of my raised cytokines.

 

[Leopardtail]

@taniaaust1 metformin and other measures to try and improve insulin sensitivity can help improve cholesterol levels.
Have a google of bromocriptine diabetes circadian rythym. short note on this is that they are say circadian rythym can cause reduction in insulin sensitivity and bromocriptine which increases dopamine can help with ones sleep wake cycle etc and improve blood sugar control. its worth a look??

Tania has very high Adrenalin heaps,
Increasing Dopamine in that situation would be unsafe without doing blood tests first.

 

[heapsreal]

Tania has very high Adrenalin heaps,
Increasing Dopamine in that situation would be unsafe without doing blood tests first.

U wont get a blood test for those in Australia that would be accurate or not send u broke. It's hard to say how one would react. It could be similar to how some find hydrocortisone reduces their adrenaline. Maybe bromocriptine could do the same. It's something she would discuss with her doctor that managers her diabetes. No harm in asking, he can say no.

The dose of bromocriptine is started quite low when used for diabetes.

 

[Leopardtail]

Adrenaline is made from Dopamine heaps..
They also have similar effects on various bodily functions..
Getting any test with ME is hard here, but serum Dopamine is a more standard test.

 

[heapsreal]

Adrenaline is made from Dopamine heaps..
They also have similar effects on various bodily functions..
Getting any test with ME is hard here, but serum Dopamine is a more standard test.

I know where your coming from but dopamine can have a calming effect too or a calming alert effect. its one of those things u have to try to know. The doses of bromocriptine used for diabetes is a fast release .6mg vs 5-10mg and up for other disorders. The fast quick release is to help reset the circadian rythym which they are finding reduced insulin sensitivity.

Sometimes increased adrenaline can be to compensate for low cortisol or low dopamine or crappy blood glucose control.

The relatively small quantity of unconjugated dopamine in the bloodstream may be produced by the sympathetic nervous system, the digestive system, or possibly other organs. It may act on dopamine receptors in peripheral tissues, or be metabolized, or be converted to norepinephrine by the enzyme dopamine beta hydroxylase, which is released into the bloodstream by theadrenal medulla.[10] Some dopamine receptors are located in the walls of arteries, where they act as a vasodilator and an inhibitor of norepinephrine release.[11] These responses might be activated by dopamine released from the carotid body under conditions of low oxygen, but whether arterial dopamine receptors perform other biologically useful functions is not known.

the above is out of wiki. i guess its showing there is a relationship with adrenaline but it isnt a clean exchange. I deally one would get tested but if one cant then the only way to know is a trial. Testing adrenaline or dopamine is hard to get an accurate measure as they have short half life. Depending on the risk, the doc may monitor heart rate and blood pressure when the first dose is taken.

I just dont know if i would give up on something like this without discussing it with your doc and trialling. It could be something very helpful, so i wouldnt turn my back on it just because adrenaline is made from dopamine, theres just so much on an individual basis that we dont know. it may not only improve insulin sensitivity but also calm adrenaline down. The high adrenaline might be occurring to try and get glucose into the cells, one of the functions of adrenaline is to raise blood glucose. So correcting the insulin resistance may fix the high adrenaline. I say may as nothing is black and white.

 

[heapsreal]

The important thing with this is to work with your doctor, especially with other ongoing health issues.