sujay more thoughts on hypercoagulation and PE

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 12, 2003.

  1. tansy

    tansy New Member

    I'm still on that steep learning curve, trying to make sense of a lot of things then getting things moving here with regard to the medical profession.
    Have been on bromelain for a while so waiting for that to have some real effect.

    Reactions to heat now very dramatic so it was back to asking questions of the board and trying to get thngs clearer in my mind.

    I always knew thing started at 13 that's when my circulation, especially in my arms, became affected, then on and off with all the symptoms I now realise are related to all this.

    Then as you know I had a PE after being on the CP for 6 months, well there were concerns at the time and I think they may be related to what's going on now.

    One was when on the ancrod/arvin through cardiac capheter a lot of blood was passed with my urine they had not expected this. They felt the embolisms had come from my pelvic area because I had not had any leg pain but did, and still do, have pelvic pain and discomfort.

    Secondly they kept me on heart medication for much longer than planned because the heart beat and rythm took so long to settle down after all my treatment and recovery time.

    Well this heat has brought things to a head, exaggerated some things I'm a little concerned about but if connected are going to make the docs sit up and take notice.

    I'm clearly showing all the signs of NMH, POTS and similar. It's been happening on and off since I was 13 too. For over 22 years now, and I know at times before, blood pools in my legs feet and lower legs (go purple to blue) and I think this is happening in pelvic area too. My hearts racing and fluttery and my blood sugar is now dropping so much I not only keep passing out but am shakey for so much of the time.

    My saliva kit has arrived so will be able to get DHEA and cortisol levels checked. Got hold of digital blood pressure reader today to test out any connected changes and record my pulse rate.

    Now for the bit I want to bounce off you. Could this pooling of blood along with hypercoagulation have contributed to my PE whilst on the CP. Now I have slightly raised fibrinogen, even more pooling etc and the haemotologist I saw thought, despite knowing my history, I should take oestrogen. He did no tests and told me it would be perfectly safe! Now with all these things going on would having been given the mini pill (his first thought till I told him I'd been told NEVER to use any form of the pill) or eostrogen put me at risk. I believe so but I need to know where I can get corroborating evidence. If this is the casse I can let him know and perhaps open the door hospital wise to looking into hypercoagulation. One can but try.

    I was told all those years ago that if I had problems that I felt might be heart or thrombosis linked I was to get it looked into immediately but the local hospital don't look into anything if you have ME/CFS. This too could theoretically open doors.

    What do you think?

    Any thoughts would be much appreciated.



    [This Message was Edited on 07/12/2003]
    [This Message was Edited on 07/12/2003]
    [This Message was Edited on 07/12/2003]
  2. tansy

    tansy New Member

    I too feel that for many of us oestrogen is risky.

    Fortunately my GP is very cautious but the haemotologist's attitude over everything was decidedly dodgy as was his advice. He even runs the warfarin clinic so you'd think he'd be more aware of potential dangers. I saw him a few years back too when he also suggested it. His comment then was that there was only a minimal risk and that the odds of another embolism were small. I didn't know about the coagulation then but he won't even take chronic/stealth infections seriously and he's the main doc here for diagnosing ME/CFS. No one treats it.

    GP can't source many of the tests that can be done in local hopsital and this haematologist has to agree to further ones, he's already said no.

    Was your fibrinogen raised? My GP did not know the significance of that but I did a search it seems it can be related to inflammation (!) and raises the risk of heart attack and strokes.

    Love to do the ISAC tests but I'm already broke and there's no point if it's not taken seriously and I can't access the treatment. There are a few holistic doctors but they are expensive and I'll have to pay for all the presciptions privately. Due to low platelets Sujay does not think the heparin a good idea so it's on with the bromelain. Also want to sort out stomach to see if I can then tolerate OLE.

    Wouldn't it be great if everything were more simple and straight forward and we didn't have to deal with so many docs who suffer from the ostrich syndrome.

    Has your latest herx settled down yet? I do hope so and that afterwards more progress is made.


    [This Message was Edited on 07/12/2003]
    [This Message was Edited on 07/12/2003]
  3. sujay

    sujay New Member

    You do have a complicated case, but I'd trust your GP. I think your haematologist is being entirely too cavalier. I'd stick to the bromelain and save my money for the ISAC. Your GP sounds like a sensible woman, and I'll bet she'll come around after reviewing your results with Dr. Berg. I'm short-staffed today, so I've got to run.