Petition: Approve the use of IV saline for treatment in PoTS and M.E for NHS Scotland patients

For what it's worth.

https://www.change.org/p/nhs-approv...ent-in-pots-and-m-e-for-nhs-scotland-patients

 

I would personally strongly advise NHS Scotland against approving this because we have no reliable evidence that it works and we have very good physiological reasons for thinking that drinking salty water will achieve exactly the same effect.

If we approve this we might as well approve homeopathy. I know that may sound harsh to some patients but it is directly equivalent. We have no leg to stand on criticising CBT if we call for this to be approved.

 

I've been taken to hospital at least twice due to hyponatraemia. On one occasion, when I was on an ACE inhibitor, my blood sodium was almost low enough to make me lose consciousness, and I suffered my only ever fracture on another.

When my sodium goes low, my consciousness is impaired, and I therefore can't always think "take sodium".

I have documented it here: http://forums.phoenixrising.me/index.php?threads/warnings-about-taking-some-meds-when-ill.33367/

 

I have no idea if this is a good idea or not, but I am against discriminatory legislation (if it is deemed to be a good idea why limit it to the scottish part of the NHS? what's next? vaccines just for those on streets (as opposed to roads, crescents etc.))

Maybe a police service that only attends incidents at addresses with an even number?

 

Health is a devolved power, so under the control of the Scottish government. Therefore, the Scottish NHS is autonomous.

There is nothing to stop good (or bad) practise being adopted by the NHS in other parts of the UK.

 

Yes - maybe it could be accomplished with salty drinks, but if one doesn't realise that one is going low until it is very low, one can lose the ability to realise what one needs. And I had no idea that I was at risk, the risk being probably due to the ACE inhibitor I had started shortly before.

 

Presumably, the IV bumps up blood volume more and faster than taking fluid orally but the effect on volume could only be relatively transient.

Perhaps it's the consequence of temporarily increased blood volume that doesn't wear off quite so quickly.

 

The effect of exercise on muscle strength is much more complicated. The equivalence of IV and oral saline is much simpler. When you drink saline the water and sodium go into the circulation, just like IV. When IV saline infusions are given they tend to be a litre over about half an hour minimum. Quicker than that can actually be dangerous. You can drink a litre of saline in a minute, especially if you are low on fluid. It will get into your circulation within twenty minutes certainly - we know that because if you drink any large volume of fluid you have to pee within about twenty minutes. In order to get to the bladder the fluid has to have gone through the circulation. So IV is unlikely to expand the blood volume any quicker in reality.

IV saline of course makes sense if you are nil by mouth, or half awake from being ill for whatever reason, or vomiting or anything that makes it difficult to absorb oral fluid. But none of these factors normally apply in ME as far as I can see. Drinking salty water at home would avoid all the hassle of trying to get to a hospital and get assessed and so on.

I think being hyponatremic from medication is a bit different. Hyponatremia is quite a different problem from hpovolemia. It is very often associated with water overload.

We have discussed this before elsewhere. I am always open to new arguments and I agree that a controlled trial would be useful to settle it. One would probably need to do some sort of double sham control - it would be easier with an IV line and a nasogastric tube with the person not knowing which route was used. But nobody has convinced me so far that there is any plausible reason why IV should be necessary. If you went to the kitchen and drank saline I think in nine times out of ten your circulation would be topped up long before you would have got to A/E.

 

Very true and it doesn't even have to be saline. I have an odd problem where I become intensely fatigued and then seem to vasodilate quite dramatically and get extreme thirst. A long drink always revives me. One one occasion on holiday I just couldn't force any water down - it was like trying to drink concrete and I lay in bed for hours feeling like I might die. Suddenly, the thirst kicked in, I drank a litre and a half of water and went back to bed. Fifteen minutes later I was on my feet demanding to know when we were going out for dinner.

The question is, though, why was I unable to drink for several hours even though I knew I desperately needed to?

 

But can they not occur in tandem? When I become hyponatraemic, I am passing a lot of water - definitely not hypovolaemic. The water becomes almost colourless - it is almost pure water. And I am parched with thirst. So I am hyponatraemic and hypovolaemic. Desmopressin fixes it almost instantly. I obviously have to drink some salt water to fix the deficits.

I have become fed up with doctors assuming that I am hypervolaemic, and drinking too much water!

 

In general terms hyponatremia has nothing to do with hypovolemia.

It is very unusual for them to occur together I think. Low sodium usually indicates inappropriate antidiuretic hormone secretion. Desmopressin would be strictly contraindicated there because it would further lower sodium. (Wikipedia says of desmopressin: It should not be used in people with significant kidney problems or low blood sodium.) If someone is passing a lot of urine they are very likely to be hypovolaemic because the kidneys should shut down urine production (unless there is diabetes insipidus where the sodium is high). Even there the person cannot pass a lot of urine for long unless they do drink a lot because otherwise there is no continuing source of fluid.

The one situation where you can get low sodium and low volume is salt-wasting nephropathy I think. That is a pretty obscure condition and is fairly easy to diagnose.

 

I'm afraid I'm not mentally capable of discussing this at present, but when able I have studied numerous scientific papers on the subject, and came to realise just how complex the subject is, and how little knowledge most doctors I have encountered have. I have suffered enormous problems as a result, including untreated polyuria in the hottest of weather, which was ghastly.

I have had desmopressin prescribed for years now. It works well.

ME is a very poorly-understood and variable condition, and I noticed that quite a few people on Phoenix Rising were on desmopressin.

 

Desmopressin will certainly reduce the rate of urine production but it is dangerous in the presence of hyponatremia, as it makes it worse. I agree that salt and water balance is complicated but I think that bit is fairly straightforward.

 

I happened to see this link today (browsing a new website about dysautonomia) so I thought I'd share it on this thread in case it's helpful.

https://www.researchgate.net/public...tion-refractory_postural_tachycardia_syndrome

A couple of extracts:

 

That's true. When one takes desmopressin one should also take salt or sodium bicarbonate, or make sure that one's levels are adequate. I do, and have no problems as a consequence.

 

I don't follow that @MeSci. If the sodium level is low desmopressin is contraindicated. If it is normal there is no need to take any. If desmopressin is going to lower sodium levels then taking sodium will have no effect. With patients with inappropriate ADH secretion pouring sodium chloride into veins has no effect on raising the sodium.

 

Well, doctors have failed to figure out the cause of my polyuria or my low sodium over many years. My blood sodium fell to 114 on one occasion, and I was in a pretty bad state.

Perhaps it's like M.E. - we don't know the cause yet, but at least in this case we have found a solution for the time being.

I used to measure my sodium and/or fluids meticulously, but sadly have in the last couple of years (I've had M.E. for 22 years) lost the ability, at least for now, due to a brain malfunction.

 

If you are bedbound , drinking copious amounts of salty water brings other issues