CantThink
Senior Member
- Messages
- 800
- Location
- England, UK
Hi all
I'm really interested to know how UK members got diagnosed with any form of autonomic dysfunction. Did your GP pick up on it and refer you to someone? Were you already seeing a specialist who picked up on it? Did you try to get diagnosed and highlighted symptoms? What type of specialist did you see?
The reason I'm asking is because I have had symptoms of something related to cardiac or autonomic dysfunction for long time.
Previous doctors related it to autoimmune thyroid disease (specifically hyper) as the obvious symptom was tachycardia. I was put on beta blockers. After a long time of getting nowhere with my endocrine issues and some extremely poor treatment coupled with rude/ignorant doctors, I gave up. I stopped taking the beta blockers and didn't pursue further thyroid testing.
During intervening few years, I continued to experience daily tachycardia which worsened with standing, walking, any activity that was strenuous such as washing myself/getting dressed/getting up the stairs/preparing food etc.
I also started to notice that sometimes when I lay down and felt very weak/poisoned my heart rate was the other way - in the 40s or 50s. Weirdly I have had brief periods of this when standing up. In both cases it feels as if my heart resets itself to a faster (over 60) bpm, but sometimes it doesn't seem to work so it keeps going low and then trying to reset to a more normal speed.
I couldn't face the doctors for this - I just felt they wouldn't believe me so I left it.
In October 2013 I got up from my bed to take my dog to the toilet. I was with my family on their river barge so my bed was very low (the bottom of a set of bunks), then I walked down a short piece of corridor and to get out of the boat you have to climb a flight of very deep stairs. I remember climbing the stairs and getting to the top, the next thing I remember is 'coming to' on the floor at the bottom having presumably passed out and I had banged up one side of my body plus my head (on the radiator/wooden boat interior stick out bits). My parents were standing over me.
I had been feeling very unwell before this and was entering a particularly
bad M.E. period of worsening of which I still haven't managed to get out of.
I also had some work done at the dentist and they tilted the chair low so that my head was low and my feet/legs much higher than my head. When they righted the chair, I went to stand up and just managed to stop myself from fainting by sitting plop back down and putting my head forwards towards my knees.
Typically at home my BP is either low normal or low. When I go to the appointments it's always on the high side of normal - I definitely get white coat syndrome. The BP seems high to me but they said it's not - I just think it is high, because mine is normally so much lower.
Fast forward to 2014 and I've been in the process of getting sorted out to
have gynae surgery - with lots of hospital and doctor appointments. At two of these they did the usual checks for weight BP etc and it was noted by the nurses that my HR was very low on one occasion and at the next appointment it was very high. No one did anything to follow it up. I did feel super dodgy with the very high HR.
Wednesday just gone, I had my pre op assessment. The nurse started to check my BP and shoved the oximeter on my finger. The machine went wild (I knew it would be bad as I felt very ill) so she looks at it and my resting HR was 158 (but prior to this I had been sitting in waiting room then gotten up and walked into the room which was probably a 25 feet walk or so. Then I'd sat down for a few minutes).
She asked to do an ECG (which I knew would be fine/just show tachy) and she did this at the end of an hour long appointment so I'd been sitting down then for a while, and she let me lie on the couch for about 5 minutes before doing it... I started to feel a wee bit better and it showed sinus tachycardia 125 BPM.
The nurse was really lovely and couldn't understand why doctors have 'left you like this' - towards the end, when I was on the couch about to have the ECG, I explained about the M.E.&me versus doctors issue and how I don't feel able to seek help due to the NHS approach to it and doctors previous treatment of me. She understood what I meant and said: "well you tell them I have sent you" and she gave me a copy of the ECG to kinda back me up.
End result was hospital decided: I can't have surgery until I see doctor (GP). Annoying thing being that I've waited 11 months for this surgery and seeing a GP is a nightmare as I can never see the same one twice. So I saw one today explained situation and got beta blockers - 40mg propranolol so have cautiously taken half (my choice she told me to take 1 but I was worried about low HR versus the beta blocker!) I do feel better for taking it.
The GP was okay - said I probably need a cardiology workup but heart itself sounds okay rhythm wise, except when she listened it was 136 BPM. She is sending me to get thyroid, electrolytes and C reactive protein blood test done on Monday. I'm exhausted by all these appointments and it's really bad timing as I should be resting for the surgery which is in 12 days time.
My concern is:
A. if the bloods come back normal and GP wants to refer me to a cardiologist... Is there any point - will they be anti M.E. (I never usually mention it unless pressed/asked, but GP referal letters state it) and will they not pick up possible autonomic issues?
B. In light of 'A' am I better off trying to pursue a possible autonomic angle - as in either self refer or try to pursuade GP to... If I could find a specialist in the UK? If 'B' is better should I eliminate cardiac issues first but not hope for any autonomic consideration, and then pursue option 'B'?
I hope I make some sense. I'm sorry this is so long - it has taken me hours to write.
I'm really interested to know how UK members got diagnosed with any form of autonomic dysfunction. Did your GP pick up on it and refer you to someone? Were you already seeing a specialist who picked up on it? Did you try to get diagnosed and highlighted symptoms? What type of specialist did you see?
The reason I'm asking is because I have had symptoms of something related to cardiac or autonomic dysfunction for long time.
Previous doctors related it to autoimmune thyroid disease (specifically hyper) as the obvious symptom was tachycardia. I was put on beta blockers. After a long time of getting nowhere with my endocrine issues and some extremely poor treatment coupled with rude/ignorant doctors, I gave up. I stopped taking the beta blockers and didn't pursue further thyroid testing.
During intervening few years, I continued to experience daily tachycardia which worsened with standing, walking, any activity that was strenuous such as washing myself/getting dressed/getting up the stairs/preparing food etc.
I also started to notice that sometimes when I lay down and felt very weak/poisoned my heart rate was the other way - in the 40s or 50s. Weirdly I have had brief periods of this when standing up. In both cases it feels as if my heart resets itself to a faster (over 60) bpm, but sometimes it doesn't seem to work so it keeps going low and then trying to reset to a more normal speed.
I couldn't face the doctors for this - I just felt they wouldn't believe me so I left it.
In October 2013 I got up from my bed to take my dog to the toilet. I was with my family on their river barge so my bed was very low (the bottom of a set of bunks), then I walked down a short piece of corridor and to get out of the boat you have to climb a flight of very deep stairs. I remember climbing the stairs and getting to the top, the next thing I remember is 'coming to' on the floor at the bottom having presumably passed out and I had banged up one side of my body plus my head (on the radiator/wooden boat interior stick out bits). My parents were standing over me.
I had been feeling very unwell before this and was entering a particularly
bad M.E. period of worsening of which I still haven't managed to get out of.
I also had some work done at the dentist and they tilted the chair low so that my head was low and my feet/legs much higher than my head. When they righted the chair, I went to stand up and just managed to stop myself from fainting by sitting plop back down and putting my head forwards towards my knees.
Typically at home my BP is either low normal or low. When I go to the appointments it's always on the high side of normal - I definitely get white coat syndrome. The BP seems high to me but they said it's not - I just think it is high, because mine is normally so much lower.
Fast forward to 2014 and I've been in the process of getting sorted out to
have gynae surgery - with lots of hospital and doctor appointments. At two of these they did the usual checks for weight BP etc and it was noted by the nurses that my HR was very low on one occasion and at the next appointment it was very high. No one did anything to follow it up. I did feel super dodgy with the very high HR.
Wednesday just gone, I had my pre op assessment. The nurse started to check my BP and shoved the oximeter on my finger. The machine went wild (I knew it would be bad as I felt very ill) so she looks at it and my resting HR was 158 (but prior to this I had been sitting in waiting room then gotten up and walked into the room which was probably a 25 feet walk or so. Then I'd sat down for a few minutes).
She asked to do an ECG (which I knew would be fine/just show tachy) and she did this at the end of an hour long appointment so I'd been sitting down then for a while, and she let me lie on the couch for about 5 minutes before doing it... I started to feel a wee bit better and it showed sinus tachycardia 125 BPM.
The nurse was really lovely and couldn't understand why doctors have 'left you like this' - towards the end, when I was on the couch about to have the ECG, I explained about the M.E.&me versus doctors issue and how I don't feel able to seek help due to the NHS approach to it and doctors previous treatment of me. She understood what I meant and said: "well you tell them I have sent you" and she gave me a copy of the ECG to kinda back me up.
End result was hospital decided: I can't have surgery until I see doctor (GP). Annoying thing being that I've waited 11 months for this surgery and seeing a GP is a nightmare as I can never see the same one twice. So I saw one today explained situation and got beta blockers - 40mg propranolol so have cautiously taken half (my choice she told me to take 1 but I was worried about low HR versus the beta blocker!) I do feel better for taking it.
The GP was okay - said I probably need a cardiology workup but heart itself sounds okay rhythm wise, except when she listened it was 136 BPM. She is sending me to get thyroid, electrolytes and C reactive protein blood test done on Monday. I'm exhausted by all these appointments and it's really bad timing as I should be resting for the surgery which is in 12 days time.
My concern is:
A. if the bloods come back normal and GP wants to refer me to a cardiologist... Is there any point - will they be anti M.E. (I never usually mention it unless pressed/asked, but GP referal letters state it) and will they not pick up possible autonomic issues?
B. In light of 'A' am I better off trying to pursue a possible autonomic angle - as in either self refer or try to pursuade GP to... If I could find a specialist in the UK? If 'B' is better should I eliminate cardiac issues first but not hope for any autonomic consideration, and then pursue option 'B'?
I hope I make some sense. I'm sorry this is so long - it has taken me hours to write.