Upped my dose and

[IdasMum]

Wasn't sure whether to post this here but decided to just incase others have some opinions.

Off to see the Dr in an hour with a long list. It doesn't sit well with me to go with a long list and urgently. Anyway am going.

Am over the non specific virus as far as I am aware. No fevers for over a week and other symptoms have abated. My CRP has come right down to 16.7. Not my best result but much better than 63 at the previous blood test. For that blood test the Dr (not my usual Dr) didn't see anything of note (CRP63!!!!). I've rummaged around more since feeling more well and my Hb is 11.5 which is low for me.

Last week we went out to buy some more chickens. I got really dehydrated and when we got home at lunchtime my BP was low and my pulse was raised (96). Not very comfortable, almost tachycardic. I did some Googling and discovered that dehydration could have reduced my blood volume resulting in the above symptoms.

I drunk plenty of water and after a couple of hours my observations we normal.

Now and again over the last few days I have had a rapid pulse. So I know I need him to check that out.

It's been increasingly difficult for me to hydrate. It's been going on for ages and was exacerbated by the fevers. I am drinking 2 ltrs per day at least of water plus some tea and coffee. The fluids seem to pass straight through and in all honesty this has been going on a long time, a very long time. I've found a prescription I asked for back in 2019 to stop me peeing so much, I was concerned it would be an issue during my interview for citizenship.

I have a history of Nocturnal Enuresis (until I was 12) and remember my parents being exasperated with me with my need for the loo so soon after using the loo.

When I was doing my nurse training, learning about the Urinary system I had one one of those aha moments when discovering the role of Anti Diuretic Hormone (ADH). I have hypothesised that mine doesn't work properly if at all.

Google led me to Diabetes Insipidus and the symptoms fit me like a glove.

I am hoping that he will prescribe me Desmopressin today, I am really not sleeping as I am up 3/4times per night and my mouth is as dry as a dry thing all night. I guess he'll want to investigate but I want some relief in the short term.

I have just upped my steroids to 8mg from 7.5mg as all that walking I was doing has disappeared and become a dream. I haven't taken a proper walk since around mid July.

Hope it's okay to have written this here PMR family.

Wish me luck.

[SheffieldJane]

Poor you IdasMum. However, you do seem very knowledgeable and on the ball. I hate going to the doctor with a long list, I can see them glazing over, so I prioritise now. I just hope I choose the right things. I just want to mention OraCoat XyliMelts for a dry mouth. They really do work. You stick one to your incisor and it really adheres safely. This keeps your mouth hydrated all night. I think PMRPro recommended them and I haven’t looked back. Good luck!

[IdasMum in reply to SheffieldJane]

Sounds fab! Will check them out.

I will need something to save my half hourly trips to the loo in the day too.

[SnazzyD]

Have you never been assessed for Diabetes Insipidus in all this time then?

[IdasMum in reply to SnazzyD]

No never. It's not something I have pushed for and I guess the shaming of being a bed wetter and feeling like a pain in the butt, has stopped me from investigating. It's only in the last few days I can see how bad things have become.

[SheffieldJane in reply to IdasMum]

I feel sad for the misunderstood little girl you were. X

[IdasMum in reply to SheffieldJane]

That's kind thank you. Have ordered some Ora Coat Melts as Dr wants to do investigations before prescribing anything.

[SnazzyD in reply to IdasMum]

I can see that and actually when one is so used to a situation it can take a while for the brain to kick in and think, “whoa there, this is intolerable”. I do understand going through humiliation as a child only to find out in adulthood that there was a good reason. Nice to know but awful at the time.

[piglette in reply to SnazzyD]

I suppose Diabetes Insipidus is pretty rare on the other hand.

[IdasMum]

Thank you. Interesting to hear your experience.

[IdasMum]

Tough appt for me but my Dr was very caring and understanding.

Have to have a blood test, do a 24 hour urine output recording , a urine test and once those results are in will decide on next step.

Oh and for now he suggests I stop my med for hypertension. That might help.

Thanks for all your support, I really appreciate it.

[LIVEORDIEHEREIAM]

IdasMum, a heads up. I use something similar to OraCoat XyliMelts for oral dryness at night. Now and then, the following happens to me.

The active ingredient in OraCoat XyliMelts is xylitol.

Scientific Committee on Food, stating that "ingesting 50 g a day of xylitol can cause diarrhea", tabletop sweeteners containing xylitol are required to display the warning: "Excessive consumption may induce laxative effects".

Xylitol - Wikipediaen.wikipedia.org › wiki › Xylitol

Otherwise, xylitol is good stuff. Some studies say it helps the gut biome.

[IdasMum in reply to LIVEORDIEHEREIAM]

😪 damn. I have issues with Sorbitol. hadn't occurred to me it would be sweet

🤢 Oh well, will try one and see. If not I have a large packet to giveaway.

[SheffieldJane in reply to LIVEORDIEHEREIAM]

I only get the dry mouth symptom when I lie down, so I only use one tablet. I haven’t experienced any ill effects so far.

[IdasMum in reply to SheffieldJane]

Jane, thank you so much for recommending these. First time last night and they worked really well. Such a relief. Am sure the very small amount of xylitol won't be an issue.

Hoping to see some results today.

[SheffieldJane in reply to IdasMum]

I use one or two every night I don’t seem to need them when I am upright. They are actually hailed as good for your teeth and gums unlike a dry mouth which can cause decay.

I hope they can sort out your urinary system related issues. I feel as if my urinary system has been through a few phases during this illness, including retention and frequency. I related it all to medication and calcium. Possibly wrongly.

[IdasMum]

9.5 hours into a 24 hour urine collection and already collected 1700mls. Had to go down to lab to pick up extra containers. Am exhausted 😑

[Constance13 in reply to IdasMum]

Sorry to hear you are going through this - I find getting up twice in the night is annoying enough.

Don't worry - your "walks" are waiting for you!😂

[SheffieldJane]

I hope they get this sorted out soon.