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 only suffer from bleeding gums, spontaneous bruising a few times a month and the IBS symptoms I've mentioned. 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 APS and my symptoms will overlap with ITP and Haemochromatosis but I had to start somewhere!
Thanks everyone and any help or advice would be very much appreciated
Andy
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andyb1969
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Hi and welcome, firstly where are you located? There is a list of specialists in the UK who you can be referred to. Specialists who understand the condition: hughes-syndrome.org/self-he... However some people do self refer themselves privately taking all their recent rest results with them, to London Bridge Hospital, to the Lupus Unit. Regarding your gut, it is not uncommon to have a real problem with gluten, you don't have to have fully blown Coeliac DIsease to have this. It is possible to have non Coeliac Gluten Intolerance. A lost of us on here have given it up including myself. bmj.com/content/345/bmj.e7982
It does sound as if you need a lot more help, and if that pain continues you should go back to hospital to check it out.
Also be aware that it is very common to have a Thyroid problem if you have Hughes Syndrome/APS which if left untreated due to unreliable testing could leave you more tired.
Also it is worth looking at the entire charity website, lots of information, and also plenty of books you can buy which are very informative from both a medical and patient perspective: hughes-syndrome.org/
I wish you wellcome and I am sorry for your difficult situation.
MaryF is a wise woman with much knowledge how to proceed.
You also sound wise and I advise you to wait till you have spoken with a Specialist of APS. So few doctors understand APS and it is such a complex illness that can attack every organ in your body. We however feel quite ok when we are well anticoagulated.
I can only wish you good luck and stay on here because we have many members here that may help you.
Good that you live in United Kingdom then it is not too long away from the specialists.
Hi Andy, and good to have you aboard! I agree with Mary and Kerstin, and I think you need to investigate more and find a referral to an APS doc. I am with a haematologist in Edinburgh royal, and she is pretty switched on, and there will be someone closer to you, wherever you are in uk. But it sounds to me that you do need more attention than you are getting at the moment. You are in the right place to receive accurate and quick advice.
I'm in the States, so I'm not knowledgable about health care referrals in the UK. But if this can be arranged in a timely manner, you might seek a totally new perspective from doctors associated with a highly regarded hospital. As I read this it sounds as though both specialists are most interested in deferring blame then in objectively exploring what is going on with your pain. So . . . time for a fresh start -- IF, (and I know this is a huge IF) you can gert a referral quickly. A private consult at London Bridge might be a good start. But again .... as a yank I I have little experience with UK provider procedures.
But from here in the States , were I in your situation (as I once was, though the severity and consequences of my situation was lower then yours by a factor of about 90%) I phoned up my insurance company for advice. I know that here in the States, insurance companies have a bad reputation (undoubtedly deserved) but at times their interest to save money coincides with your interest to be treated effectively and well. The insurance company nurse agreed with my concerns, made a phone call to one of my providers, -- and I got the hip imaging I sought. (Of course, turns out the doctor was right and I did not have hip necrosis.) But still . . . the insurance company and I thought the test could pay for itself if my surgery could be avoided . It couldn't, but when it was time for the surgery my mental attitude was more relaxed. Which is odd, except I was confident that the surgery was needed and was a gateway to a more normal life. And having confidence restored in one's provider is very, very valuable.
In my case, my surgery went well, my new hip is doing great. And given the hard-to-measure, but very clear effect that mental attitude has on recovery, -- I would say that the "unneeded" MRI did pay for itself as,again, my attitude toward my surgery and recovery was clear and positive. The test banished that X Files paranoid conspiracy music from playing in the background of my head.
Good luck, and keep us informed. We're all cheering for you.
Hi Andy. Your symptoms sound so familiar! Try googling 'thrombocytopenia'. Sorry this message is so short. I'm on my phone and can't see too well. Feel free to ask me anything you might want to know.
Hi everyone and thank you for taking the time to reply, apologies if I was rambling but I've so many new things going around in my head!
Hi MaryF, I live in Doncaster so the nearest specialist on the list would be in Sheffield. Do you know if there is a way of being referred to them, should it be done through my GP or my current Haemo Consultant or is there another method? Thanks for the advice, I have started Gluten Free today! I'm back for the Colonoscopy in two weeks time so by the time the results of the biopsies come back hopefully I may have seen a change for the better. Thank you for the links to the information.
Kerstin/Andrew, thanks also for your replies. I agree I need more help so hopefully now you've all helped me in the right direction I'll be able to find it.
Gina, thanks also, I wont have much to do with an insurance company here in the UK. Hopefully in following the advice I've received I will find the help I need.
Hi Gluten intolerance usually does not show up in the Colonoscopy. I also meant to say that I take a decent strong probiotic which helps my gut immensely, but as with all new supplements and drugs always check with your specialist. You can get your GP to refer you, however at times if there is a block with this people go to London Bridge taking all their recent NHS results with them, however I don't see why you can't be referred on the NHS, you may have to push, and they as in GP may be keen to see that list. I sometimes suggest that people email their Specialists and GP using the secretaries emails, but marked for them, including the list o specialists and the charity website to help make things clearer, let us know how it all goes. MaryF
Hi, I am not sure if this will help you with your situation but I wanted to say hang in there. I have had 4 or 5 colonoscopies in the last 3 or 4 years because of a previous colorectal cancer. I take warfarin for my APS everyday. When I have a colonoscopy I have Lovonox injections. The procedures have all been fairly simple even with all my blood thinners. Hang in there it will be OK. I am not sure how it all works in the UK but you have the best APS doctors over there so I hope you can insist on seeing one. If you find a Dr. who knows about APS like Mary F says then I think they will be a compass for you and can provide the direction you need to get all this sorted out instead of feeling like a tennis ball getting bounced back and forth. I wish you the best and I said a prayer for you to get better.
Hi and thanks for your reply. I'll take on board your advice thanks until after my colonoscopy. In my last visit to Gaestro he said I'd been tested for CD which had come back negative however since going GF 24-48 hours ago my symptoms do seem to have eased (although I may me imagining things!) My Haemo wont put me on anti coagulants as my platelet count is low due to my ITP. Fingers crossed I'll see some progress, thanks for taking the time to reply.
Hi everyone and hope you're all keeping well. I'm not sure if updating this thread is how to do things but here goes! I went for my colonoscopy last week after a two week course of Prednisolone took my platelets up to 82 and made it possible, I'm on a reducing dose so no doubt they'll be back to 20 ish in a few weeks but at least they served their purpose for now! At least my wife will be able to relax now as the steriods dont help with the mood swings !! On face value the results were clear, just waiting for the biopsy results which should be back in a few weeks.
I booked in to see my GP the day after as I still have all the symptoms I mentioned before, the good news is he's referred me to the Specialist in Sheffield on the list you provided MaryF so thank you for the advice! My GP was great, he's doing everything I would have expected my Haemotologist and/or Gaestro to do but he's very honest about the limitations of his knowledge. To be honest I was only half way through telling him my concerns about my current Haemo when he offered to refer me elsewhere which led me onto the list! He seems as thirsty for answers as I do!
Thanks again everyone for your help / advice and support
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