Hi all! I've recently been diagnosed with APS aswell as ITP as a result of annual monitoring of my Haemochromatosis which I was diagnosed with around 10 years ago. My iron count is steady between 150 and 200 so is ok (ish!) I began around March last year with symptoms very similar to IBS so was referred to Gaestro for tests, that was last July and the symptoms have become much worse and much more painful since then. I've been admitted twice for a colonoscopy and biopsies but both times the Gaestro consultant has refused to carry it out as my platelets were at 34 and 27. On the second occasion he wanted to give me a platelet infusion, they waited until a few hours before they were due to do it before being told by Haemo not to! They did put me on a weeks course of prednisolone (60mg a day) which raised my platelets to 120, however the gaestro chap told me to stop taking them and go cold turkey, I've since learnt I should have come off them gradually. Within 48 hours of stopping taking them I developed a deep sharp pain around my spleen which I still have today and that was last October around 3 months ago. I've spoken to both Haemo and Gaestro, each one says its a problem related to the other one and I cant get either to take responsibility for helping me out! In desperation I did go back to my GP who referred me for an ultrasound of my abdomen, spleen was the right size however they say they couldnt see my pancreas due to wind in my bowel in this same place as the pain! I cant see how this 'wind' can be causing me so much pain for so long, I'm taking large quantities of pain killers which are barely covering the pain and adding to the worry.
I've finally got a date for a colonoscopy and a course of 2 weeks prednisolone to take beforehand so my platelets should be high enough to go ahead but they finish the day of the procedure, I've questioned it and been told by Haemo they'll look into and get back to me...... Gaestro chap says the APS is nothing to worry about with the procedure but I'm feeling less and less inclined to trust him as each day goes by, his response when I asked him about it was that bleeding in my bowels was his concern, not clotting.
After the APS and ITP diagnosis late last year I have not been given any type of medication to take by Haemo, just an appointment for 12 months time, should I be worried that I'm only having bloods taken at such long intervals or is that the norm with platelet levels so low?
My 'gut' (sorry) feeling is that the results of the colonoscopy will show nothing the Gaestro chap acknowledges as a problem he can help with and he'll send me back packing to Haemo who seem to know little about the Haemochromatosis, APS and ITP other than the very basics.
Should I have such long gaps between Haemo appointments and does it seem right that I have no regular medication? I do suffer from bleeding gums, spontaneous bruising a few times a month and the IBS symptoms I've mentioned, I've also lost my appetite (but no weight loss!) and headaches more frequently than I ever have. Should I let the Gaestro chap go poking around when I dont trust him (does what he's saying seem right and am I just being paranoid?) I appreciate this forum is for ITP and my symptoms will overlap with APS and Haemochromatosis but I had to start somewhere!
Thanks everyone and any help or advice would be very much appreciated