Sticky Blood-Hughes Syndrome Support
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Confused after first Haematology Consultant Appointment, please Help


I just wanted to ask if anyone has had the same experience at their first consultant appointment?

Yesterday morning met my haematologist consultant for the first time (Warwick Hospital), and came out after my 20 min consult more confused than when I went in.

So far I have had 2 positive ANA and/or lupus tests (again still confused over whether these are the same tests or different) and have a whole list of other symptoms:

Excrutiating headaches/migraines

Extreme tiredness

Pain in knees and feet

Feet, toes and fingers are always and purple

Mottled skin

Heart palpitations

1 case of lung blood clot

1 miscarriage

Numbness in fingers and loss of use in arm

feelings of being drunk when sober

Slurred speech at time

and the list goes on.........

The consultant I saw yesterday was'nt really interested in any of the other symptoms just seemed very cross that my GP had referred me when I hadnt had multiple miscarriages and only the 1 case of known clot, and then told me she was going to write back to my GP for her to refer me to a rheumatologist - another long wait then . In the next breath was then saying about for her to be able to put my case across for long term warfarin medication she would have to do a MRI on my brain to check for small clots.

So needless to say this has left me very worried and not knowing where to turn next, and without any clue of whether I do or do not have Hughes/Lupus.

If anyone can help I would be extremely grateful or have any ideas of where to go next. for such a long post.


P.S. Merry Christmas to everyone x

10 Replies

Oh Kerry Im so sorry you had such a bad appointment and its such a familiar tale on here. I sometimes want to bang the heads together of these Doctors!!

What you dont say is if she ended up giving you any medications at all? Have you been left with nothing for your symptoms?

Obviously Im not a Doctor but from what you write and your results it would seem that the obvious conclusion would be that you do have Hughes. You should be at least on Aspirin but as you rightly say should you be on warfarin - the notion you need an MRI to see if you have clots seems extreme to me.

Do you think there is any chance you could get a referral to St Thomas? Failing that, could you possibly afford a private consult with say Prof Khamashta at London Bridge who would be able to sort you out and then write to your Doctors locally to get you on a regime there.

So sorry this has not worked out the way you wanted but please keep us informed what you decide. x


Hi Thanks for your reply,

No I haven't had any medication or recommendation of medicine as yet :( the only thing she gave me was a pink slip which the nurse whisked off me as soon as I walked out of the room (have no idea what that was for), a yellow slip to book MRI and sent me off for more blood tests, a lupus anticoagulant, a B2 Glycoprotein 1, FBC, Renal, Liver, and another 2 that I can't remember the names of. She said I had to have another positive ANA as my first 2 positives were only just on the 3 months apart line. The MRI has really frightened me especially as at the minute I seem to be having alot more headaches than I normally do.

She has told me to see my GP next week after she has written back to her to discuss referring me to rheumatologist as they can't do internal referrals, so I coud maybe ask about a referral to St Thomas then, as privately there is now ay we could afford it at the minute.

Kerry x


I think it would be pretty lame if this blood test came back negative and they split hairs on the last one because it was shy of the 3 months!! Some of us have been diagnosed without ANY positive blood tests so the notion that this Doctor is being so pedantic is really pathetic.

To also leave you unmedicated is also in my book appalling, so Im pleased that you have a GP appointment next week. Please arm yourself with as much info from here and the HSF website to take with you to your GP and really press her to get the referral to St T's, especially if the quick route to London Bridge is out of the question for awhile.

The fact that the Hemo had a moan about your GP could be used to your advantage as the GP obviously thinks you should be referred, so gang up on her as much as you can to prove her wrong. I do think your GP should give you some medication while you are waiting for the referral though. (Cant do internal referrals - good heavens what is the NHS coming to).

Finally if it was me....and I am prone to a good complaint letter.... I would write a letter of complaint about that appointment, the fact that you have been given no medication and no internal referral (which I don't believe) will cause even more delay before you are seen by another consultant etc etc and what would they prefer that you cost them a few hundred pounds or tens of thousands if they get lumbered with the cost of your after care if you stroke on them etc....

Sorry this is so long but I get slightly annoyed at these people.......

She sounds just like the one who runs my local Anticoagulation Clinic - thinks she knows it all about Hughes until you talk to her and then its actually quite frightening. I wrote a letter of complaint which was ignored so I wrote another and then another and eventually I got a response. I was then invited to a meeting with the Head of Pathology (her boss), I asked if they knew how many of their patients were in the therapeutic range in the Clinic to which he looked at me as if I was speaking another language. Turned out they had no idea! When I showed them a study of how much it costs to treat patients that stroke because they had not been adequately coagulated he nearly fell off his chair and invited me back to another meeting after he had time to read the info. As a result of my meeting they employed two anticoagulation nurses that would go out to patients houses to check their INR's instead of making them come into hospital - and I got my referral to St Thomas!

1 like

Oh dear,a consultant with only half the knowledge on board if that. You need to go back to your GP, as they are being so helpful with referrals. Show them this:

and also print them out a couple papers off our site: See if you can persuade them to refer you to there, and if they can.. they can then guide the local team and help your GP! It saddens me to hear that somebody was cross that your GP had referred you! Your GP sounds more in the loop to me. Mary F x


Hi Mary F, Thanks for your reply, yes I'm going back to my GP next week as I want to speak to her about the heamatologist not taking down all my symptoms and also I need to speak to her about this letter she will receive with regard to the rehumatologist referral, so I could try and speak to her then.

Kerry x


Yes - and what you are going through, is quite typical of many of us on here, not just in the UK... I know it costs.. I had to save up for London Bridge... I took with my my last blood test results which i got from my GP surgery, did the same with my thyroid tests etc etc. So what I paid for was just the appointment... Many of us have had to do this. To be clear. If you go privately... to bring the NHS into line with your care... it is London Bridge, there are not any private referrals to St Thomas'. Best of luck. And please take the prints outs.. this is how I got places, and you will many on here have followed this idea with the idea of taking the right information along and gently pushing! Mary F x


to add, please do not worry about the MRI, here in France it is one of the first things they did for me, they look for any white matter and lesions which helps them give a more accurate diagnosis.... ie for sneddons etc. It is nothing to worry yourself although your appointment was negative..she is doing something!!! although I was started on aspirin at this time..having never had a clot! just symptoms.....along with the blood tests etc this was when I was diagnosed best of luck! x


Hello Kerry,

I am sorry you are yet another victim of poor communication at the hands of a 'medical professional'.

I would like to tell you that you shouldn't worry about having an MRI as it would appear that it is exactly the right thing to do considering your symptoms.

The MRI is to show up any damage that small clots (TIA's) may have caused in the brain.

If you have a referral to a Rhuematologist they are ussually the specialists who deal with autoimmune illness, so maybe the nuerologist is on the right track.

My symptoms almost mirror yours and were proved by MRI so don't be too daunted as it sounds as though you are, at least, being sent in the right direction.

Take care and let us know how you get on.

x Sue


p.s. I meant Neurologist!


just a word of warning. I had at least two MRIs after I was diagnosed and on aspirin. I was told that they showed a few white spots'but they were nothing to worry about'! It was only when they were repeated when I finally got to St Thomas's that it was confirmed that they did indeed account for my increasing cognitive dysfunction. When I queried the disparity St Thomas's registrar said it was a case of how they were read and that their radiologists were able to'read'the fine detail. By the way, it was the neurologist at my local hospital who referred me to St Thomas's. She was brilliant inasmuch as she admitted she couldn't help me but felt that they could. I now attend the haematology clinic there under prof Beverley hunt and they are great. I was put on anticoagulants immediately and now self test. Unfortunately, those little white spots were brain damage and I can no longer work or use my hands properly, plus other probs, so I urge you to get that referral. Also, the rheumatologist was useless at my local hospital (yours may be better). Best of luck, Stella


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