Yesterday I went to St T's. They have taken a load of blood tests. I asked if the antibeta2glycoprotein was negative this time would I lose my APS diagnosis - it seems that that depends on my consultant up here. I think he goes along with one positive test means you have it - I hope - I would hate to be back at square 1 with no anticoagulation.
I was also told to re-introduce vit K in my diet as they are now recommending a small amount of green veg each day - but still advise no cranberry stuff. I had stopped as it was the only way I could keep my INR in range. I was also told ST T's is now advising an INR of 3-4 (my range was 3.5 to 5)
I was told I have some lupus symptoms and that my last tests showed I had positive ANA but negative ENA?????
Sadly I was also asked if stress could be causing me to lose my speech - I thought I had long since proven this is not anxiety.
I feel really low about all this. I see my own consultant again in three weeks time. By then the bloods might be back.
I feel like I am still having to fight my corner. And just when I think I know where I'm at it's all change.
Lynn.x.
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stillwaiting
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I am sorry you are having a tough time, please keep very good detailed diaries of your symptoms.. as to be only going on blood tests is putting some of us at risk. Who originally set your range? Please keep us all in the loop, and remember you are not alone with this sort of carry on. Mary F x
My consultant rheumatologist up here set my range. He started me at 3 and then after a series of possible TIA's he raised it.
I have always tried to be upbeat about all this but since diagnosis I have felt low and now even lower. I have always wondered if I had lupus as I have 75% of the symptoms. So this is being re-tested as well.
Well at least you have good support in some places, just be firm about any symptoms that get worse with lowered INR or anything, plenty with you in the same boat. Mary F x
I have read some of what you have written. You can be happy that you have been at st Thomas as I have understood they know APS there. (I live in Stockholm). You are on warfarin as I understand and that is a relief. As I also can understand the docs want you to keep a relatively high INR which means they thing you have had clots. The most important thing to feel safe is to keep CONCSTANCY in what you eat. I have my own Coagucheck and I take a cheque every morning now as I have started new medicins and that change my INR. I have Lupus Anticoagulant and thus my INR is difficult to keep constant. Eat some broccoly for ex and make a note how much every day. Make notes because our memory is not so good every time. Ask them to cheques your INR at least every week. An INR of 5 seems a bit high but we are all different and INR changes from time to time.
Have you read Kay Thrackray "Sticky blood explained" and after that Kay Thackray: "More sticky blood". If you have not I think you should read them.
Hope you will have a good answer from the doctors!!
Take care , Kerstin
Hi Lynn
Keep plugging away. I was discharged back to GP from St Thomas's despite two previous positive tests and a range of symptoms, 1 proven and 1 unproven DVT. It was also suggested that my symptoms were stress related! I think it depends on who you see so you need to be stronger than I was when you see them next. I was shocked to have my diagnosis revoked after all these years. If the Professor is an option for you I would definitely recommend you see him as he has since reinstated the diagnosis and I am now under the care of local Rheumy and Haematology teams on Warfarin feeling generally better.
Thanks Lissylou - I am not being seen there again - unless the tests they did show anything. But thanks for saying about seeing Professor Hughes
To be honest it was the stress thing that really got to me. I knew I was only going there for a one off consultation just to help the drs up here to help me and they have offered more ideas as to how to look after me. Am pleased they are re-doing the lupus tests.
I think I just feel cross that we are forever having to stand our ground when quite frankly I just feel too weary. To travel 200 miles round trip to be asked if this could be stress - words fail me!!
This is the reason, that I am motivated with two other people well placed to help, to bring a book of case studies together regarding Sero negative Hughes Syndrome, I was so pleased to hear Professor Rahman speak at our last Patient's Day at St Thomas' regarding this subject matter. Try not to take it personally, which I know is difficult, as I write this both my children too ill for school yet again, luckily I have more intelligent local support. Mary F x.
Hope your children feel better quickly. Yes I was thrilled that Prof. Rahman spoke at conference. Thanks Mary - I shall get over myself - lol- makes me more determined than ever though. Hope your book comes together.
I understand that I can not imagine the problems you are dealing with in England. I am so lucky living in Stockholm and with two good doctors and all the antibodies. I can tell you it took 9 years before warfarin and I had to fight a lot. If you have this illness it is very important to be persistant and fight.
I am in United States & they will not treat you for Hughes unless you have 2-3 positive blood test. I had to go to London & saw Prof. Khasmashta.
I had one positive test 17years ago & a strong history of miscarriages, etc... I test negative now. This does nt mean Hughes went away. It means that the blood test is not showing positive because they cannot test for all the proteins involved in the disease.
The reason they do all the blood test is because huges is associated with other diseases.
Be patient & know you are at the right place to get the help you need. Ask looks of questions when you go back.
Still waiting I am sorry how your appointment went, it seems to be following a trend down there. Unless you are half dead with positive results they don't want to know anymore.
I was so lucky to catch Professor Hughes in a corridor when I had an appointment there back in 2004, he agreed a quick chat and diagnosed me. In those day we always got underlings and we waited a year between appointments even to get blood results. And I found out in 2012 I have positive anti Ro back in 2004 but nobody told me or my GP.
The stress theory makes me so mad. My GP once said why on earth would you choose to chase a diagnosis if there was nothing wrong, especially when you have nothing to gain for instance large state benefits.
I saw so many consultants and travelled hundreds of miles, who does that for fun.
When we compare ourselves to a fit well energetic person we know we have something wrong.
I had a permanent headache from junior school to 44, only the prof accepted that was possible. Have fatigue , pain which moves around all the time, weird rashes etc etc how that be caused by stress or nothing even.
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