mrs angry

[dan2366]

hi all I need help, had a stroke last year recovered well and luckly I am back at work, I have had trouble with symptom of aps for avery long time but was diagnosed very quickly once they were pointed in the right direction, I have been to see a heamotologist twice and the second time was a waste of the £1.50 it cost us to park, I also have polycythemia, so I guess I was a stroke waiting to happen I am on warfarin theraputic range 2-3 which will not be increased unless I have another clt of some kind, she just was not interested has not asked what syptoms I have and how long I have had them she has now discharged me from the clinic I feel so bad some days its a struggle to get out of bed and sometimes I spend allday in my bed I was so angry and upset I thought I was finally going to not feel so fatigued and painfull because I was going to get some treatment, but how wrong I was because I smoke and as yet have not been able to give up her answer was stop smoking and you will feel better I am sure well i had migraines from puberty and did not smoke then,sorry for the rant but my circumstances are such my husband is disabled and we have our limitations even before my stroke as you can imagin we are now sruggling in lotts of ways I have had to cut my hours by one third just to be able to keep working. I feel totaly let downI am not silly I know I should not smoke but its very difficult to give especialy if you dont feel at all well and are beeing treated for depression for most of the last 30 years I have had a terrible night not slept much as too angry/disappointed/upset so that will all catch up with me shortly but I will try to keep plugging on any advice will be gratefully recieved

[MaryF Administrator]

Hi there, where are you located and do you have a specialist who understands Hughes Syndrome/APS looking after you? We also advice our members on here to get their vitamin D, B12 and Iron tested alongside their Thyroid, as any of these being out, can make you worse. Smoking wise, if you are going to give up, (as of course it can make your blood thicker), please get the support of your GP, so you are not doing it alone, there will be a smoking cessation service in your area. MaryF

[dan2366 in reply to MaryF]

i am in the UK in the midlands and no I dont have a specialist was refered to that heamotologist by my stroke team I have had those other bloods tested as regular check after stroke they have found I am low in folic acid I have a script for that everything else fine thanks for the advice

[MaryF Administrator in reply to dan2366]

Ok here is the list of specialists, scroll through the Midlands all of it, East and West until you find one. Go to your GP, take your most trusted advocate, ie friend, relative, colleague neighbour to back you up and insist on a referral, as it will not only help you but your GP also, to be guided by the correct advice.

assets.healthunlocked.com/c...

These are always as a pinned post on the right hand side of the forum. MaryF

[Manofmendip]

Hi and welcome.

My colleague, Mary, has given you some good advice, which I endorse.

Dave

[Ageingfemale]

Hiya. It is so frustrating to believe you are finally finding out what is wrong only to be dashed again. I think everyone on here will confirm that has happened. I was lucky in that my stroke consultant sent me to the haematologist at my local hospital and she immediately wrote to Guys hospital in London and I go there every couple of months. I live in Warwickshire but it's so well worth the hassle to go to London. My husband is also disabled/bed bound with MS and although we have Carers in four times a day the ultimate responsibility is mine and the rest of the time I do everything. I'm afraid to say that I also smoke (do try e cig too but when stressed/depressed/sitting quietly, nothing beats a cigarette. ) my stroke consultant once told me I had 5 major risk factors of having a full blown stroke... and that did not include smoking! So I could go through the agonies of stopping only to still have a stroke anyway. I KNOW it's no help and I should give up but it seems to be the only thing I have control of in my life. So be it. Now you are on this site vent your anger/frustration on here we all understand.

[WendyWoo50 in reply to Ageingfemale]

My heart goes out to u. U really do need help and support. It's hard enough to cope with this when u have good gp and specialist.

Ur inr needs to be 4+ as most of us feel really bad until we are.

This is a clotting disorder and not a bleeding disorder so it baffles me why some haematologist are so scared of listening to what Prof Hughes recommends.

I had a real fight yo get my inr raised. My friends on hear will tell u. In the end I prepared a package of info on Hughes and on myself that I posted to : my gp, haematologist, INR tester, specialist locally and Prof D'Cruz my specialist in Guys. That did the trick - finally they sat up and listened and raised my inr.

I am happy to send the package of info via email to anyone who thinks it may help. Just private message me your email address.

Nothing on earth that u do or don't do will help you even a tiny bit with an inr of 2-3. (Respectfully in my opinion 🙄)

But Mary's advice to get the various blood tests done is important.

Good luck keep us informed - ur never alone, u have us now and we understand

Love Wendy 💋

[Ray46 in reply to WendyWoo50]

I suspect the haematologist is following the british haematology guidelines, I have a similar history to the poster and I am on exactly the same treatment for that reason. To go beyond that you will need to get hold of an APS specialist who is prepared to go outside the guidelines.

I would be very cautious about assuming that symptoms are APS and that more warfarin is the best treatment - I felt I was on the way to full recovery 10 months after stroke, but got much worse after that (possibly coincidentally that was when I was started on warfarin). All of my symptoms _could_ have been APS, _some_ of my symptoms have since been diagnosed and treated/resolved, _none_ of those were actually down to APS.

Very few people are in range 100% of the time so it is straightforward to determine if higher INR will help (which is a good indication that it is APS) - simply chart your symptoms against your INR. This is what I did, I was approx 70-80% in 2-3 range, over 20% in 3-4, no improvement in symptoms with 3-4 inr, if anything worse.

Getting everything else tested including vitamin levels and thyroid is vital.

[Lure2 in reply to Ray46]

I wonder how many antibodies for Hughes Syndrome you were tested for and if they were positive. Or what symptoms did you have?

Are you also Primary APS (no other autoimmun illnesses) ? If we have other illnesses like Lupus or Sjögrens or Thyroidea they have to be treated also of course.

You say that you you did not find any improvement when you started Warfarin. I wonder how often you tested your INR in the vein and how often it was kept between an INR between 3.0 - 4.0.

I believe prof Hughes is right when he says that very many symptoms disappear when we are properly anticoagulated with Warfarin (or LMW Heparin) and that it needs to be a high INR at 3.5 or 4.0 or even higher for some of us. That is if we have been diagnosed with Hughes Syndrome of course.

I can tell you that when I selftest I am almost always 100 % in range with my INR as I selftest every second day and if I am not I eat more green vegs (a bit too high) or take a Fragminshot (under an INR of 3.0 or a little more). That is how a Hughes Syndrome-treatment should be I believe.

Kerstin

[Lure2 in reply to Lure2]

Hi Ray again,

I now read that you may have hypothyroidosis and then Warfarin will not help of course.

That is why it is so important that everyone with Hughes Syndrome go to a Doctor, specialized in autoimmin illnesses to determine what symptoms and illnesses they have before they start the treatment. The Doctor can take bloodtests and then distinguish between the different illnesses and tell what treatment that is appropriate to each of them.

It is much easier when you are Primary APS like I am with no other autoimmun illnesses positive. Then you have primary to thin your blood.

Kerstin

[Ozchick]

i don't smoke but my husband told me it's easy to quit-he must have quit about 20 times before quitting for good with the help of nicotine patches. (now non smoker for about 16years) If you have a supportive GP make a date when YOU are ready you will have a better chance of success. When you are overwhelmed with other problems it's too hard to add another stressor in your life, like quitting, Best of luck!

[Wittycjt]

So, she dischgd you because you didn't quit. Did she offer any help to assist you with quitting. She sounds like she is frustrated with you. Hmm...

[dan2366 in reply to Wittycjt]

No nothing at all I am not sure it was because I had not given up she just seamed as she could not be bothered she has not even asked what issues i have

[Hughes-Comrade]

As Mary suggests about running other tests in an effort to keep an eye on things pay particular attention to your ferritin level. Here in the USA an acceptable normal range is 50-200. If your having to do phlebotomies often to keep your HCT down, your ferritan could very well drop. This is a constant battle with my wife. Hers is often around 8-11. She has polycythemia, but not Hughes.

~ Blue Skies ~

[Hughes-Comrade]

Regarding smoking and a desire to quit, my brother was recently told he has copd. That scared him quite a bit and then he went on you tube and looked at some videos. His doctor prescribed some pills for him and he has successfully quit smoking. I think he's on his third month without smoking.

[WendyWoo50]

I gave up smoking for years about 10 but sadly started again when we lost my baby granddaughter. I just needed something. During that 10 years I felt no different at all.

When I had the brain clot June 2015 I gave up instantly. Again I felt no benifit. Now I have two a day. I choose when I have them and enjoy them.

I know this is not the advice I should be giving but sometimes, when u feel u have nothing - a little of what u fancy does u good. So try to cut down. Use an ecig maybe all day and enjoy a few in the evening.

[dan2366]

Thank you all so much for your comments they were a help i was angry with myself for letting the heamotologist get me down so badly because I had been quiet possitive since my stroke as I think that helps and she depressed me and made me very sad I am going to speak to my GP and ask for a referal to an APS specialist, My GP is very good and does listen to me. I will keep you all up to date if there is any more news, not angry any more 💉😴

[Lure2 in reply to dan2366]

That sounds good to my ears! I can understand how difficult it can be to stop smoking. Two friends, even very ill, can not stop but they should of course.

Perhaps you could talk to your brother and ask him how he did. Do you have someone in your family who is a smoker as I guess it can be much more difficult then also.

I started smoking when I was 17 and smoked 10 cigarettes a day. Stopped when I was 26 years and married as we wanted to get children. For me it was not diffucult but I think that for some of us it is much more difficult to stop drinking and smoking etc as that has to do with if you get addicted easily or not. We are born with that I have learnt.

I think Mary gave you a very good advice also.

Stay with us here as we are here for you!

Best wishes from Kerstin in Stockholm