Hi all, this is my first post on the forum, although I've been reading on and off for a while. I live in the UK, and probably like most on here feel I've been completely let down by the health care system I once thought was so good.
I became unwell earlier this year, with what was later to be diagnosed as CFS or ME. The illness have has hit me pretty badly and I have been unable to work at all, thou my GP seems keen to try and get me back to work. (He is a bit old school, has suggested I was imagining some of my symptoms and was suprised that the anti-depressants he gave me did nothing for any of my symptoms)
Anyway on to the POTS bit, my most disabling feature I would say is my inability to stay standing upright at all for more than perhaps 30 seconds without starting to experience discomfort. I can stand for longer maybe 10-15 minutes still, but the longer I do it, the more light headed i become and the worse I feel. I have tried at length to explain this to my GP, but either he doesn't care or just doesn't know. He just says it is fatigue. I'm 100% sure it isn't fatigue as I don't feel tired standing up, just very horribly ill. Thing is I can walk for perhaps up to a mile, well at least a 15min walk, provided I keep moving. The symptoms are so much worse if I stop walking, and then I have a huge huge urgency to sit down. So its not really fatigue that is limiting me, its some sort of orthostatic intolerance. Problem is no-one is willing to test me out for this. All my GP did for me was take my blood pressure after I had been standing for perhaps around 2 mins and declared it hadnt changed, so kind of decided at that point i was imagining things. I was probably moving around too in his office, so it wasn't taken with me totally stationary.
About 3 months ago, I ordered Sarah Myhill's mitochondrial tests, which indeed did show I wasnt in a great way. I scored 35% I think, and again my GP dismissed these tests, saying you will find vitamin deficiencies in anyone. Unfortunately Dr Myhill is inundated with patients so couldnt see me, so I havent been able to undertake any of her protocol as my GP wouldnt support any of her recommendations, and I've no-one to help show me how to do the injections she recommends.
Here are my results from the Mitochondrial tests:
ATP levels 1.85 (normal range 1.6-2.9nmol/10^6) comment: low normal
Ratio ATP/ATP Magnesium 0.52 (normal range > 0.65) comment: deficient
Ox Phosphorylation 62% (normal range > 60%) comment: on slow side due to blockages
Vitamin B3 16.5 (normal range 14-30ug/ml) comment: borderline deficiency
Co-enzyme Q10 1.60 (normal range 0.55-2.00 umol/L) comment: normal
Translocator Protein Out 37.6 (normal range >35%) comment: borderline
Translocator Protein In 20.5 (normal range 55-75%) comment: moderately blocked
Mitocondrial Function Score 0.38 (normal range 1.00-3.00) comment: very poor
Cell Free DNA 12.9 (normal range up to 9.5ug/L) comment: some increase in cell degredation
SODase 38 (normal range >40%) comment: poor
Glutathione Peroxidase 67 (normal range 67-90 U/hHb) comment: borderline selinium status
Glutathione 1.48 (normal range 1.7-2.6 mmol/L) comment: very poor
So from those results I am borderline or poor in pretty much everthing except co-enzyme q10, which i had been supplementing before the tests anyway), and looks like I have some toxicity issues too.
As regards my main question is to wonder if anyone thinks I have POTS?
Like i said, my my problems are standing up, and especially standing still for even short periods, and infact showers make this much much worse. So I have cut them out a lot. Secondly I get pretty quick respite from the majority of my symptoms by lying down. I have only had Post exercise malaise just twice since Ive been unwell, but I think this is largely because I cant remain upright for long enough to do activities to tire me out.
The majority of the day once I get up, I spend slumped on the sofa or in bed. I do have some cognitiive problems, but only minor and I feel id almost be able to return to work if someone could help sort my OI issues out.
What is so annoying was prior to suddenly becoming ill, I was very fit and active and had even won national titles in athletics a few years ago. In fact the day before I became ill I had run 8 miles, so lack of fitness wasn't an issue to me (although perhaps overtraining could have contributed to all this) Although because of my OI, I've been reduced to probably 1% of what I could do before.
I was thinking of buying a blood pressure heart rate monitor to perhaps try and do a poor mans tilt test. I also borrowed a friends HR monitor a while ago, and my resting HR before i was ill was around 40-44, occasionally below 40, and now its had quite a jump to around 58-60. I really do feel my fitness has actually counted against me getting some proper help, as I look healthy, my HR seems low even now its jumped up a lot, and in the docs my blood pressure is low normal too at around 115/65. I had an ECG too which came back normal, but I was lying down for that.
Apologies for a lengthy post but any thoughts?
I became unwell earlier this year, with what was later to be diagnosed as CFS or ME. The illness have has hit me pretty badly and I have been unable to work at all, thou my GP seems keen to try and get me back to work. (He is a bit old school, has suggested I was imagining some of my symptoms and was suprised that the anti-depressants he gave me did nothing for any of my symptoms)
Anyway on to the POTS bit, my most disabling feature I would say is my inability to stay standing upright at all for more than perhaps 30 seconds without starting to experience discomfort. I can stand for longer maybe 10-15 minutes still, but the longer I do it, the more light headed i become and the worse I feel. I have tried at length to explain this to my GP, but either he doesn't care or just doesn't know. He just says it is fatigue. I'm 100% sure it isn't fatigue as I don't feel tired standing up, just very horribly ill. Thing is I can walk for perhaps up to a mile, well at least a 15min walk, provided I keep moving. The symptoms are so much worse if I stop walking, and then I have a huge huge urgency to sit down. So its not really fatigue that is limiting me, its some sort of orthostatic intolerance. Problem is no-one is willing to test me out for this. All my GP did for me was take my blood pressure after I had been standing for perhaps around 2 mins and declared it hadnt changed, so kind of decided at that point i was imagining things. I was probably moving around too in his office, so it wasn't taken with me totally stationary.
About 3 months ago, I ordered Sarah Myhill's mitochondrial tests, which indeed did show I wasnt in a great way. I scored 35% I think, and again my GP dismissed these tests, saying you will find vitamin deficiencies in anyone. Unfortunately Dr Myhill is inundated with patients so couldnt see me, so I havent been able to undertake any of her protocol as my GP wouldnt support any of her recommendations, and I've no-one to help show me how to do the injections she recommends.
Here are my results from the Mitochondrial tests:
ATP levels 1.85 (normal range 1.6-2.9nmol/10^6) comment: low normal
Ratio ATP/ATP Magnesium 0.52 (normal range > 0.65) comment: deficient
Ox Phosphorylation 62% (normal range > 60%) comment: on slow side due to blockages
Vitamin B3 16.5 (normal range 14-30ug/ml) comment: borderline deficiency
Co-enzyme Q10 1.60 (normal range 0.55-2.00 umol/L) comment: normal
Translocator Protein Out 37.6 (normal range >35%) comment: borderline
Translocator Protein In 20.5 (normal range 55-75%) comment: moderately blocked
Mitocondrial Function Score 0.38 (normal range 1.00-3.00) comment: very poor
Cell Free DNA 12.9 (normal range up to 9.5ug/L) comment: some increase in cell degredation
SODase 38 (normal range >40%) comment: poor
Glutathione Peroxidase 67 (normal range 67-90 U/hHb) comment: borderline selinium status
Glutathione 1.48 (normal range 1.7-2.6 mmol/L) comment: very poor
So from those results I am borderline or poor in pretty much everthing except co-enzyme q10, which i had been supplementing before the tests anyway), and looks like I have some toxicity issues too.
As regards my main question is to wonder if anyone thinks I have POTS?
Like i said, my my problems are standing up, and especially standing still for even short periods, and infact showers make this much much worse. So I have cut them out a lot. Secondly I get pretty quick respite from the majority of my symptoms by lying down. I have only had Post exercise malaise just twice since Ive been unwell, but I think this is largely because I cant remain upright for long enough to do activities to tire me out.
The majority of the day once I get up, I spend slumped on the sofa or in bed. I do have some cognitiive problems, but only minor and I feel id almost be able to return to work if someone could help sort my OI issues out.
What is so annoying was prior to suddenly becoming ill, I was very fit and active and had even won national titles in athletics a few years ago. In fact the day before I became ill I had run 8 miles, so lack of fitness wasn't an issue to me (although perhaps overtraining could have contributed to all this) Although because of my OI, I've been reduced to probably 1% of what I could do before.
I was thinking of buying a blood pressure heart rate monitor to perhaps try and do a poor mans tilt test. I also borrowed a friends HR monitor a while ago, and my resting HR before i was ill was around 40-44, occasionally below 40, and now its had quite a jump to around 58-60. I really do feel my fitness has actually counted against me getting some proper help, as I look healthy, my HR seems low even now its jumped up a lot, and in the docs my blood pressure is low normal too at around 115/65. I had an ECG too which came back normal, but I was lying down for that.
Apologies for a lengthy post but any thoughts?