MF and low sleep SO2

[Mal42]

Hello, I have had PV now MF for a number of years. I am on the research study and now have a Withings watch to measure some bodily functions. I do find that the measure for steps is way out so maybe I shouldn’t trust it too much.

My sleep oxygen is always below average and sometimes low. I do have anaemia, I do get tired I now realise that the low sleep oxygen could be adding to this. I am inclined to call my specialist, I thought I would see what you think, does anyone else experience this? I do deep breathing before sleep and when I wake up. The frequent waking could be due to bladder issues but I now see could be to do with low SO2.

Thank you

Mal

[hunter5582]

Low O2 while sleeping is something that should be investigated. It can be a significant health issue. Suggest you contact your care team about doing a formal sleep study. That will give you the best data.

[Chicagopv]

I’ve taken iron with rux bec I’ve had anemia with it. I don’t know anything about the sleep problem.

[MCW22]

I'm exactly the same. Post PV MF. My watch also regularly says low Spo2. Usually 89 to 95. I mentioned it at one of my appointments but they didn't seem concerned. Daytime seems normal. I don't trust these watches much. The first one I got was faulty and didn't work the way the tutorial said. I was sent a replacement which works better, however it regularly gives readings that I know are wrong. Cycling constantly pops up. I haven't been on a bike in 25 years. I thought I finally got rid of of it but after an update it's back again. I also changed the weight from stones to Kg but again after the update I found it had reverted back to stones again. I don't have much faith in it at all and have lost interest.

[gset]

Hi Mal

I too have noticed the same issues with my Withings watch having post ET MF and wake up frequently to go to the bathroom or so I thought. My lower nights 88-91% blood oxygen have also correlated with headaches overnight so I told my MPN team and they referred me to the sleep team for a check. I would definitely mention it to your team. Best wishes.

[JP1952]

I am also having issues with my withings watch.The step count is always about 2000 less than my Garmin watch (I've been wearing one on each wrist as an experiment). My night time SO2 always low. It doesn't track my swimming at all, but did say I had been cycling three times when I had actually done aqua aerobic classes. I haven't even set it for cycling because like you I haven't been on a bike for years.

Perhaps we should give some feedback to Sanius.

[Pippapot]

I agree low O2 levels should be investigated, however I wouldn't rely on the accuracy of these Withings watches. As others have mentioned, my watch is also consistently wrong, recording activities I haven't done, steps that are way lower than they should be and recording me asleep when I'm not!A few months ago the MPN app stopped working, despite me reloading it several times. I have contacted Sanius many times, always say they'll get back to me then don't.

[Mal42]

Thank you for your replies. Hmm, these watches not measuring correctly and varying from measurements on other gadgets, how accurate is this research going to be? Trying to contact anyone about anything is time intensive. I do wonder about sanius who I believe are conducting the research. It would be nice to have a contact person who knows what’s going on.

Anyway my so2 the last couple of nights has been up a bit and my day O2 seems ok for now. I can see how low SO2 can account for muzziness and tiredness. Strange how it’s not taken into account, especially as so many of us are anaemic.

Have a good weekend

Mal