Sunday, 29 May 2011

Cardiologists, PCOS and Vitamin D Deficiency

Hey everyone,

I wanted to let you know how things are going with my health right now, as there's quite a lot of things happening!!

I've been having increasingly worse issues with my blood pressure and tachycardias/palpitations recently and it had started to get me worried, plus it's limiting my mobility even more, and making me more tired ... so I started looking into it online when I was able to do some reading. My symptoms point to my probably having Postural Orthostatic Tachycardia Syndrome (POTS). Since I wasn't sure if I was just overreacting, I decided to do some tests on myself before talking to my doctor (it's not easy to get hold of her even on the phone). My dad has a small blood pressure machine, so I was able to do a 'Poor Man's Tilt Table Test' on myself.

Often a proper tilt table test will be done on someone where POTS is suspected. The test is generally done in hospitals and involves being strapped into a table and gradually raised, whilst monitoring your blood pressure to see if it changes dramatically when your posture changes. For most people, the body naturally copes with posture changes without it affecting blood pressure. For those with POTS, it doesn't, and the blood pressure rises, along with the heart rate. For people with ME, tilt table tests can be quite dangerous, hence why it's a better idea to do the 'poor man's version', which is basically taking your blood pressure after time spent in different positions (lying, sitting and standing) - There is information on this on Jodi Bassets Hummingbird site. If you go to the Testing for ME page, and click ctrl F to use your browsers search function and search for 'Tilt Table Examination', it describes the poor mans test in detail.

I really wouldn't advise doing this test without a doctor present - it was pretty gruelling to be honest ... but for me it was easier because my access to doctors is so difficult. I think over the last few months I've gotten more and more frustrated with the meagre level of care I've been getting for so many years, and becoming more and more desperately in need of help. It's got to the point where I know if I don't push to get what I need, in whatever way I'm able to, things won't ever change and I have no chance of things ever getting better, and a very high probability that they'll get worse! So I had to ... have to (!) ... do something!

Anyway, the poor mans test showed that something is most certainly not right, and although I'm not a doctor, (I was a nurse before my ME became severe) I am fairly certain that POTS is an issue for me, though whether anything else is going on I have no idea.

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So, last week, I finally managed to get a phonecall from my doctor, ironically for something small I needed a consult for. She 'can't' do home visits, and I can't get to the surgery unless it's so urgent there's no other choice, so for me a phonecall is about as good as it gets. (And yes, I've tried other doctors - she's the best of the ones I've tried. She does at least seem to accept I am genuinely ill ... but there are constraints on her from the surgery to not do home visits unless the patient is terminally ill with cancer, basically.)

I didnt really tell her anything new as such, other than the tilt table results, since i gave her an up to date written list of my symptoms very recently - but she must not have read it well enough, because she seemed totally surprised when I told her about the cardiac symptoms I've been having, and the fact that I have now been having severe gynae issues (bleeding almost constantly) for around 3 years now. I guess she just presumed that had cleared up since I haven't talked to her about it in like 2 years. (Funny that, how when you don't see a patient, you don't know what's going on in their lives. Smilie pulling tongues. Image copyrighted to Camilla Erikson)

Last time we talked about it I had a gynae scan & because of the risk of endometriosis etc (I have Poly Cystic Ovarian Syndrome - PCOS), these are meant to be done at regular intervals, so she insisted on a scan as soon as it could be ordered, & a specialist consult to see if we can get things under control. So, that's appointment number one that I will have to go to in the near future.

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She seemed very worried indeed about the blood pressure/tachycardia issues, and the results of the tilt table test. (I'm still seeing irony here, since I've told her about tachycardias/palpitations on at least 2 occasions before, sigh. It's frustrating to feel like I have to figure out my own health problems because no-one is doing it for me ... but I guess that's life for so many ... too many ... people with Myalgic Encephalomyelitis in the UK right now.)

Picture of hearts by Andrea Smith. View her flickr photostream.
So, she's referred me to a cardiologist - massive surprise as that means she's actually taking me seriously - a novelty in my experience!! She's going to try to get me set up for a constant cardiac monitoring (I presume for 24 hours) at home, too, so that I'll have the information already available when i see said cardiologist, which will mean less possibility of any hospital stay, even as a day patient. I really hope she does get that set up as it'll take a bit of the stress out of this for me.

So - that's appointment number two that I have no choice but to attend in the near future. Honestly, I'm so stressed about having to go out ... and the possibility of not being able to do everything in just one visit, too! I know how much my recent dental visit took out of me ... I'm still not back to where I was before it, now, months later!! I'm so scared of what result these visits could have on my overall health and disability - but they're unavoidable because logically thinking, the results of ignoring these problems could be just the same, or worse, for my health. These new appointments will inevitably not be as well-organised as my dentist appointment was, either, probably meaning much waiting in hospital waiting rooms, sitting up (horrible in and of itself), and of course there'll be all the stress of trying to introduce a new doctor to the medical mammoth that is ME. And even more worrying is the inevitable crash afterwards, and even the possibility of a full on relapse from so much activity and stress at a time when I can already barely even make it to the bathroom 2-3 times a day!

Of course there are also worries about the results of the tests, but I've been living with bad health for so long, that somehow doesn't seem quite so scary. Funny, I'm more worried about my ME getting worse than I am of a potentially serious cardiac disorder, for instance. Says a lot about what ME has been like for me, really, doesn't it! Smilie Sighing. Image copyrighted to Camilla Erikson

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As the first step in seeing what's going on in my body right now, my Dr sent one of the practice nurses here to take copious amounts of blood from me this week, to send off for various tests. The main thing she was testing for was vitamin D deficiency. (again this was something which I was concerned about, researched, and then talked to her about last week) I've been concerned for a while that I might have a severe vit D deficiency due to being housebound for 8 years, & rarely even seeing the sun. I have a lot of symptoms of it, and it can lead to some quite serious issues, particularly with your bones (Osteomalacia) which could explain some odd symptoms I'm having, and some of my pain and muscle fatigue in general. It seems insane to me that doctors would not routinely think to check for this deficiency in patients they know are bedbound, considering the serious affects of long term deficiency - but there we are!! I would never have thought to look for it unless I'd researched the symptoms I was having and tracked it back to it possibly being osteomalacia. Or then, perhaps it's only ME patients with whom they are so lax? Who knows?!?

The tests came back a few days later, and yup, I'm quite severely vitamin D deficient. (It's worrying but it also gives me some hope for the future (though hope is kind of scary in this instance - there's so much at stake if these things don't make any real difference), that actually this is something treatable which we can hopefully reverse to some extent and so reduce my overall symptoms & severity!! I haven't had something like that to really hope for in a long time.

Sun in a Jar! Vitamin D Capsules - Image by essgee51, view their Flickr profile here!
The doctor wants to refer me to a specialist about the vitamin d deficiency, too, and get a scan done to check my bones ... but she's willing to wait on that until the other 2 more urgent things are done, so I don't have to take on any more all at the same time, thank god!! In the meantime, she's going to prescribe vitamin D - she's trying to figure out how much I'll need. (I was already on basic grocery store supplements so she needs to work out how that changes the amount I will need, shown by my blood results) I might well need it in injection form, but she might also start me on oral treatment to see how I go on that, and if it doesn't work well enough, bump me up onto the injections. I should find out over the next few days how she's gonna go with that.

So, that's where I'm up to right now. Waiting for a stack load of appointments and wondering how the heck I'm going to deal with it all ... not to mention trying to get together a good lot of information for the cardiologist since he may never have dealt with someone with severe ME before! (Or worse, may not 'believe' in ME as a physical illness!!) I want to be prepared but I'm half killing myself trying to read and decide what they need to see, etc. Fun.

Honestly, I feel like over the last year or so of getting more involved in the ME 'world', all I've been learning is how little I really know about ME, (even though I'm aware I know more than a lot of people who have only been given the CFS diagnosis when they really have ME, and have learnt so much just through living it for 15 years!) and how much more the UK health system COULD have been helping me, in very real ways, were they not so focused on treating it as all in my mind, and instead were using international research which proves otherwise. I feel so angry ... and so scared. I feel that had I known what I am starting to know now, 15 years ago, it would never have come to this ... completely bedbound and needing to see a cardiologist! What would have happened if I hadn't done the research and discovered that my symptoms fit with Osteomalacia and asked the dr to test for vitamin d deficiency? (Lynn Gilderdale, for example, suffered many broken bones because of this very issue, including a broken back!!) If I hadn't got so desperate and started reading more, and fighting harder, what would be happening to me now things have got so bad? What has already happened that should not have had to?? How dangerous could that be for me?!!? I feel so alone with it all. I wish I had a doctor to do the research FOR me, because I'm really struggling to find out everything I need to know - because I don't have anyone I can trust to do that for me. I understand now why some people end up suing - something I would never have even considered before, for many different reasons.

A friend, Dominique, is really inspiring me to learn to live better within my 'energy envelope' and not to push myself so hard. She's doing it tough learning to do that, and I find it really inspiring. (I doubt she realises that!) I hope I have the guts to do the same, but I'm finding it honestly a rather terrifying prospect. Kudos to her!

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)



  1. I recognize myself in so many of the topics you share here. (ME, PCOS, heart/puls high wire) But most of all in the negelct part. I had this conversation with my mother this morning actually, how forgotten and left to fight on our own we are.

    I was 13 when I got sick, took 6,5 YRS to get a diagnosis and all the way I've been fighting doctors to take me seriousy. I am now 22 and everything I know about ME comes from me reading online. If someone had given me a diagnosis earlier, I wouldn't have pushed myself into the ground and be alot better now. (Docs said "push through the pain" IDIOT)

    There should be some sort of medical advocate, someone who can inform us as well as keep the docs in place. I'm sick of being put off as the "overreacting little girl in the corner".

    We need help. Hoping someone realizes that soon.


    PS: Sorry about the rant, just hit a nerve:p

  2. I was sobbing by the time I finished you post. No I had no idea. If you only knew how much I related to your post. I am walking in your shoes, if you will, or vice versa. I am terrified to go to the VA because I have been told they only treat the symptoms (don't look for pathology) and my doctor was afraid I might 'inadvertantly' get 'seriously' hurth.

    But my health has taken a major dive since the poisoning and I realized, like you that I have to do something. The what and with whom is the struggle.

    I'm working on going to Canada to see Dr. Hyde but that will take a divine miracle so I'm left with what to do now. I am having serious cardiac issues like you. I think I have pots and oi and something else as I am short of breath a lot. My main problem is that if I go to the VA they will treat me with drugs and I have now proven again that drugs bring back the serious gate problems, the serious neurological problems, etc. so they would in essence be making my situation much worse. So I wait.

    I have, however, been changing everything and anything I can do help my body. I will be writing a post on that soon. And I have been working on my own anger, loss, grief, and frustration as well.

    Susannah. I love you. You are amazing to me. You say I inspire YOU but YOU inspire me. I wish I still lived in the UK because I have no doublt we would be fast friends.

    I think you are on the right track. We can only do what we can do. Nothing more. The sad state of affairs of health care in both of our countries in reference to ME creates huges obstacles for us to work around and overcome. Not to mention, being careful not to get ourselves 'sectioned.' I often wonder, if we had the appropriate care and were treated with respect, what that would do for our health.

    Hang in there my friend. You are never far from my thoughts.


  3. Hia Jenny!
    It really does seem to me like the worst thing about this illness, for the majority of us, is how little support we recieve because of all the political and media related issues surrounding the disease. Just seems so unfair that people who are so sick are treated in that way.

    I can't imagine what it would have been like to get ME at 13!! Gosh, I've barely dealt with it as an adult!!! "Push through the pain"?? Sheesh - I'd love to give that doctor ME for a DAY and see if he continues to give that kind of advice, sigh! It's not right that you've been treated that way. My cousin got ME at around the same age as you, and was treated in much the same way for a long time. She was lucky enough to have a nurse as a mum who was able to fight her corner though, and I know that made a lot of difference for her, because although she had many very bad years, she seems to have been relatively well for a number of years now. Just that one person fighting your corner changes everything, it seems - so yes, a medical advocate could change people's lives in a very real way!!

    Take Care,
    p.s. - Rant away!! ;)

    I'm so sorry you're in such a similar position. I wouldn't wish this on my worst enemy, never mind my friend! You really have been inspirational for me because I see how hard you're fighting to get the help you need, and I think that's exactly what I've needed to do for a while now, I just didn't really know how anymore. It's so hard when you don't have a doctor guiding you at all, isn't it!!

    It hadn't occurred to me, though I knew it somewhere in my head, that Dr Hyde is actually in Canada and so much more difficult again for you to get to! Yikes! I hope and pray that you can get there, and within a reasonable amount of time!!

    I have to admit, I think I've sort of lost the spirit to make changes, recently, because honestly I just haven't known what to do. I've tried so many different things that have made so little difference (or like you, have made things worse) that it seemed safer to just keep going as I was, but that's not working either, so ...!

    Your support has come to mean so much to me. I'm really, really glad that we met! :)


  4. Thanks for your post. I've only just discovered your blog. I have had M.E. for 19 years now, & the cardiac issues have become more severe in the past year. I had a tilt table test done with a cardiologist who is researching M.E. cardiac abnormalities, so it was helpful to see a doctor who takes these problems seriously. I was strapped to the table upright for 5 minutes when I blacked out & my heart stopped. It restarts again once you are horizontal again. I had no idea I would react so strongly to the test. They have found multiple abnormalities with my heart but it all gets thrown on the M.E. bandwagon & there seems to be little that can be done to help the symptoms. Anyway I do hope you get some helpful advice & results from a good cardiologist.