Do haematologists know much about APS? Am poss being referred to one pre cholecystectomy. Tested pos for APS Abs, but test needs repeating.

[Spicer21]

Hi,

I am on a NHS waiting list for gallbladder surgery as I have a large gallstone that's causing me pain. (I am in the UK.) At a recent consultation at my local hospital I advised my surgeon's colleague that I have recently tested positive for Beta-2 glycoprotein 1 antibodies, both IgG, IgM and am waiting the 6 to 12 weeks to get them retested as is required to determine whether or not I have Hughes. (I paid for the s and will pay for the retesting privately too.) The surgeon's colleague had never heard of APS/Hughes or these blood tests, but put it on my file for the people who do the pre op assessment to see; he said that they might decide to ask a haematologist about my situation. As I know that it's normally a rheumatologist or immunologist that would diagnose Hughes, would a haematologist be likely to be knowledgeable about the condition? I'm told the waiting list is about 6 weeks for my op and I therefore expect that I won't have had a chance to retest for the antibodies before my pre op and operation itself is likely to take place. Thanks in advance.

Fielder

[Manofmendip]

Hi

I was diagnosed by a Neurologist, which is unusual. He referred me to a haematologist who, in turn, referred me to Prof Hughes in London.

I think, as you have found with your surgeon, it is pot luck whether a medical professional is up to speed with their knowledge as to whether they know about and/or are experienced in APS/Hughes.

What medication are you on for APS/Hughes or are they waiting until you test positive after the 12 week retest?

Dave

[Spicer21 in reply to Manofmendip]

Hi Manofmedip,

Thanks very much for your reply.

Here's hoping that the haemotologist that I might get referred to is at least willing to look up APS, even if they haven't heard of it before.

I'm not on any meds for APS. I got the first round of blood tests done myself - paid privately to get them done. I'm going to pay for the tests to be repeated and then if they prove positive again, I think I'm going to ask my GP to refer me to one of the Profs at London Bridge I think, although there's someone I might ask to see who's in Surrey (an immunologist who did his training with Prof Hughes).

The reason I suspected APS was that I suffered abdominal pain (which was probably a gallstone attack, but might have been 'stomach angina' that I've read can be caused by APS) and then I got horrendous leg pain that made me bedridden for circa a month plus livedo reticularis appeared on my knee. I also have lupus-like symptoms, but the private blood tests that I had done for that were all negative.

Fielder

[Manofmendip in reply to Spicer21]

You can self refer to London Bridge, as it's a private hospital, so no need for your GP to refer you. Just phone up and make an appointment and take your blood test results and a full list of symptoms when you go.

Dave

[Spicer21 in reply to Manofmendip]

Thanks so much for telling me that, Dave (The less I see of my GP the better...I'll spare you the details!)

[Manofmendip in reply to Spicer21]

You will need an understanding GP on board if you are confirmed with APS/Hughes and need regular meds and INR tests if you are put on Warfarin.

[Spicer21 in reply to Manofmendip]

A good point you make, Dave. Hopefully, I'll be treated better once I've got a diagnosis. If not, I'll change surgeries, although I hear from neighbours that the other practices in my area are just as bad. I'm hoping to move house in the not too distant future; I'll need to change GPs then and will do my research before signing up.

[Manofmendip in reply to Spicer21]

Where are you from? I'm south of Bath and my surgery is very good.

[Spicer21 in reply to Manofmendip]

I'm in Berkshire. Sounds like I should be looking to move to your neck of the woods. I'm actually looking for the right house for my needs and that could be anywhere in the country, so Bath is a actually possibility.

[Manofmendip in reply to Spicer21]

I live in Midsomer Norton, ten miles south of Bath, and my surgery is Somerton House Surgery.

In Bath, we have the Royal National Hospital for Rheumatic Diseases (The Mineral Water Hospital). I am seen there every six months, in theory, and they support me and my GP in keeping me on Fragmin, when the CCG kicks off about the cost and wants me back on Warfarin.

[Spicer21 in reply to Manofmendip]

That's what you want, isn't it? - A GP that knows your case and fights your corner. Will put an alert on Rightmove for Midsomer Norton and the surrounding area

[Manofmendip in reply to Spicer21]

That's good. Check out the surgery's website, as you need to be living in their catchment area. somertonhousesurgery.co.uk Don't get the town, which is Midsomer Norton, mixed up with the town of Somerton, which is miles away further south in Somerset.

[Spicer21 in reply to Manofmendip]

Thanks, Dave. Will definitely let you know if we're going to be neighbours

[Manofmendip in reply to Spicer21]

Great

[Manofmendip in reply to Spicer21]

I've just sent you a PM

[misswoosie in reply to Spicer21]

Rightmove should put a link to GP surgeries and hospitals alongside the school ratings. We'd all be clammering to live in about 5 areas in the country.

[Spicer21 in reply to misswoosie]

Good idea, but imagine the house prices - would be like trying to afford a house in London.

[misswoosie in reply to Manofmendip]

Hi, interesting as the Spire and Nuffield hospitals up here both require a GP referral. Must be another example of the North South divide! How much is a consultation? I think they wanted about £400 for a Derm consult ( for my son) at the Nuffield.

[Spicer21 in reply to misswoosie]

Don't know as yet - but will post up with cost if/when I go to London Bridge.

[Lure2]

Hi,

Some members have negative antibodies but have APS all the same. Antibodies go up and down but I have always had all three positive.

Before you do that operation be sure to come in contact with a Doctor who really understands what APS is about - too thick blood. This is important!

Livedo reticularis is said to be a sign of APS. Perhaps you could ask your GP, or some other Doctor, if you could try baby-Aspirin (75 - 100 mg) as this is the first step forward to feel a little better. I am now on Warfarin.

I have both a Rheumatologist and a Hematologist as Specialists of this illness here in Stockholm. See to it that you do not go around with too high bloodpressure which also could be a symptom of APS.

Read also "Sticky Blood Explained" and also (if you have got the time) "More Sticky Blood" by Kay Thackray. They are good books about symptoms and treatment of APS and how it is to live with the disease.

Best wishes from Kerstin in Stockholm

[Spicer21 in reply to Lure2]

Thanks so much, Kerstin. I shall take all of your advice on board and read the books you suggest. I have a home blood pressure monitor which is accurate so I'll check on that tonight.

[Ozchick]

Agree with Kerstin- the books are worthwhile and I found 'sticky blood explained' the more useful of the two. I see Haematologist twice a year and Rheumy about 3-4 times a year for check ups.

[Spicer21 in reply to Ozchick]

Thanks, Ozchick. I will definitely read that book.

[baba]

You need to get your blood clotting issues sorted before any surgery. Good luck.

[Spicer21 in reply to baba]

Thanks, baba. I won't sign on the dotted line until I see at least a haematolgist.

[Holley]

I was diagnosed by my hematologist. He's managed my APS ever since. As mentioned earlier, get your anticoagulation underway prior to surgery. Those of us that take certain anticoagulants have various protocols in place to prepare for surgery. For example, I take a drug called Coumadin (warfarin). Before surgery, I go off 5 days prior and bridge with Lovenox injections. You'll definitely want your surgeon to speak with your hematologist beforehand. I had my gall bladder out a few years ago. I'm in the states so unfortunately, I'm not very helpful at connecting you with specialists.

[Spicer21 in reply to Holley]

Thanks Holley, I'm still in the process of being diagnosed with APS - showed positive for Beta-2 glycoprotein 1 antibodies (both IgG and IgM) and I now need to wait 9 weeks for the tests to be repeated. (I got the blood tests done privately without my GP being involved as he wasn't taking me all that seriously re my symptoms.) So, I'm not under the care of a haematologist as yet, but the surgeon I saw re my gallbladder op said that they may consult a haematologist re my situation at my pre-operative assessment. At the moment my surgery is being scheduled for circa the time I should be repeating the blood tests - and I'm reluctant delay because I'm living with gallbladder pain on a daily basis. I guess I can only see what they the haemotologist advises me to do...At least now I am reassured that they should know about APS. (My impression before had been that rheumatologists and immunologists were the main specialists for APS, whereas now I know different.) Many thanks again for your reply.

[MaryF Administrator]

It would certainly be useful for a Haematologist who understands this condition to be involved in any decisions around your surgery, some of us have one, or a Rheumatologist or in my case I am lucky to have both. MaryF

[Spicer21 in reply to MaryF]

Thanks, MaryF. I keep getting livedo reticularis on my right knee so I'm going to insist that I see a haemotologist pre op, even though I'm not officially diagnosed - as something is definitely going on with my circulation.