Sticky Blood-Hughes Syndrome Support
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Dont know what action to take next. Advice please

Many of you on here will have read about the failed attempt to anticoagulate me with warfarin, I had a bad reaction to it & had to be hospitalised. I had a similar reaction to heparin so I am now back on clopidogrel & aspirin.

I was being seen at Guys Hospital by Dr D'Cruz but when I returned for my follow up appointment I was seen by a junior Dr who was treating me as if I was a new patient.

Due to my appointment being repeatedly cancelled it had been re-booked for the wrong consultant.......I was not pleased after a 4hr journey with an elderly hospital transport driver who had difficulty finding the hospital.

I was supposed to be seeing Dr D'Cruz to discuss scans & tests previously carried out. I had waited a year to be seen by him & came away very disappointed. I decided to find a consultant nearer home in Bath I thought it to be a good move because one of the admins on here attends the same hospital for his Aps.

I have various complicated health issues & had attended the hospital in the past under a different consultant the one the admin is seeing. This consultant failed to point out my constant positive APs results.

Why would a consultant do such a thing when I were clearly positive is beyond me. it was I that spotted the positive results & pointed them out to the specialist nurse who agreed I should see Professor Hughes she told me she used to work with him.

I went to see Professor Hughes at London Bridge but this action wouldn't have been needed had I have known of the results of my bloods taken at Bath. At the time I had no knowledge of Aps until coming on healthunlocked.

I now have a new consultant a colleague of my previous consultant who I saw Just after the New Year. On advice of other's I had a few bullet points to discuss & I took a couple of letters with me from Dr D'Cruz & Professor Hughes for the consultant to read, he was running hour & a half late.

I wasn't examined, there wasn't even an examination couch ! I tried desperately to explain what happened whilst being on anticoagulants & went on to explained I had another TIA & had suffered serious chest pain. I also told him since that episode I am now getting pain in my chest when I lay on my left side which is worrying me.

He didn't listen to my heart he just kept referring to my Fibromyalgia & proceeded to refer me to a FM coping clinic he finished off by saying I will review you in a years time ! I tried to protest but that was the end of the consultation.

When I arrived home I were angry I had just been given another year's sentence of further misery. I searched the net for the Consultants email address albeit his university address of which I were not aware of at the time.

I sent a him an email saying I felt intimidated during consultation due to his clinic running late. I went on to ask why he had focused on my FM when it is not a life threatening condition but Aps is.........surprise wakey wakey Mr Consultant. I didn't stop there I went on to ask why he hadn't addressed my chest pain & was he aware it could be a side effect of this life threatening condition ?

I reminded him my care & well being would only be as good as the consultant treating me............I had nothing to loose, I received a response. He has made me an urgent referral to a cardiologist & rightly so. His consultation letter arrived yesterday his review date is still for a years time ! Since when have follow up appointments been yearly ?

Advice Pleeeeease.

16 Replies
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Great you are being referred by him, did you give him a list of consultants that specialise with this condition? It is under pinned posts on right hand side of forum, this would be the best thing. If you do see somebody who is not up to speed with this, then do write your history out in bullet points and attach all results and letters from the right people and send and email in advance.

Also with you Fibro, did you ever do the private tests? As the ones on the NHS are just not detailed enough? I can tell you now if your thyroid is not properly medicated then all other symptoms including allergy will be worse. I should know as this applies to myself.

Mary F

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I do not understand that you still have problems with anticoagulation and Specialists?

What have they said about your heart murmurs? Did you have an Ecocardiography 3 years ago and what did that show?

How do you react on Warfarin and Heparin when you are allergic to them? To both of them?

Has it not been possible to find a Specialist of autoimmun illnesses who is willing to take on your case?

Best wishes from Kerstin in Stockholm

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Hi Kerstin,

If I am honest I dont understand either why I am finding it so difficult I am giving up hope of finding a good consultant.

I have had a heart murmur for a few years now but nothing has been said about it I shall have to wait & see what the cardiologist has to say.

I reacted to both the warfarin & heparin so anticoagulation had to be stopped because I had chest pain & was swollen with fluid on in chest cavity.

I am really giving up it is making me depressed to have to battle so hard.

Jill x

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You must not give up!

You must have a Specialist of course. He will send you to an Ecocardiography at once and find out why you can not tolerated anticoagulations. I have never heard someone not tolerating both Heparin and Warfarin.

Are you waiting for a Cardiologist? Who remitted you and why? Did you react negative to both LMW Heparin and Warfarin with chest issues?

Kerstin

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Yes, I am sure an ecocardiograph will be requested.

I reacted to both the warfarin & heparin as I stated in my post.

Jill

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I read a bit from the answer from APsnotFab 5 months ago to you about different drugs on different time etc and together with Thyroid-drugs etc erc.

I wonder what happened if you did those changes APsnotFab talked of to tolererat the mixture with Warfarin? She is a very wise lady and knows a lot of our illness.

Obviously it did not work as you had to try LMW Heparin. How did you react on the Heparin?

Kerstin

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Hi Kerstin,

I think you have confused me with someone else that APsnotfab contacted it was not me.

Lynn & Mary have such good knowledge of APs they are like walking encyclopaedias where the thyroid and APs is concerned.

I simply can not tolerate heparin or Warfarin it makes me ill. The Heparin also made me ill in exactly the same way as the Warfarin.

I shall have to stay on the Clopidogrel and Aspirin until something new is available.

Jill x

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What a nightmare, commiserations x

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This nightmare is turning into a horror story its really getting me down. Bless you for your message.

1 like
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I understand perfectly x

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No, I have not confused you with someone else!

Kerstin

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Hi Kerstin,

I have not had a message from Lynn about when and what time to take my drugs ! Not recently or 5 months ago.

Are you referring to when I was in hospital ? Apsnotfab and I spoke about LMWH because my medication was stopped whilst I was in hospital and I was in need of bridging.

We are getting off the subject of my post which is about my new consultant not my medication.

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I thought the most important thing for you was to get a Specialist and stay safe with him and be medicated for your APS.

My intention was to help you.

If you can not tolerate Warfarin and LMW Heparin what have all the Doctors said about Rivaroxaban as HollyHesky suggested some time ago? You have also seen prof Hughes!

It should perhaps be better than nothing (you have today no anticoagulation) but that is a question for a Specialist who knows APS.

It does not matter too much if we get off the subject as long as it is about APS and we can learn something.

I suggest you follow the good advice from Mary on this post 2 days ago.

Kerstin in Stockholm

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Good morning Kerstin,

That is exactly what I thought I had done but it seems I have made another mistake and chosen the wrong consultant.

I know you are trying to give me good advice but if the people treating me will not listen then what am I supposed to do ?

I can not demand Rivaroxaban my consultants have never offered to prescribe it so at present I am on the aspirin and Clopidogrel. If something abnormal shows when I see the cardiologist them maybe a trial of Rivaroxaban might be suggested.

indeed I did go and see Professor Hughes and have a firm diagnosis he was a great help to me and a lovely man.

Mary has misunderstood my post. I am not looking to be referred to a specialist ( I have been referred ) it is the new specialist that is the problem. This is why I am asking for advice because I do not know what to do next.

Of course the Clopidogrel and Aspirin are better than nothing but they are not keeping me symptom free.

My Hypoparathyroid and Hypoparathyroidism are both treated in Oxford by my endocriologist so is not of concern.

Like yourself I have also had TIA's, one affected my left eye. When it happened it was like a black curtain being pulled across the eye so that I was unable to see.

I do hope your cataract surgery resolves your sight problem.

Jill x

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But what does your Specialist (Consultant?) say about the problem that you are not anticoagulated?

If the Consultant (Specialist)) is the problem you should you look for another perhaps. Mary thought that perhaps.

My micro-clots causing those eye-symptoms have never returned after I am properly and stable anticoagulated with Warfarin and INR in range all the time.

My operation of the right eye (that eye I had problems with) is a usual age-related Catharactoperation as far as I know. I have only 60 or 70 % vision on that eye.

I thought you had Thyroidea-issues not Parathyroidea-problems. I was operated for Hyperparathyroidea in 2006. Are you on any drugs for the parathyreodosis?

You write very well and remember things very well. That is a good sign.

Kerstin

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I have a rare genetic type of Hypoparathyroidism my son also has it. Our parathyroid glands are not functioning it is a problem we were born with. We both have to be medicated.

I was Hyperthyroid but now I am Hypothyroid so I have Graves disease.

My memory is very poor & I often have to correct what I have written because of error it is all part of these conditions we are burdened with.

I must go & sort myself out I am going to my sons for Sunday lunch.

Nice talking to you

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