GP reluctant to refer.: Hi everybody I... - Hughes Syndrome -...

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GP reluctant to refer.

Newcastlelad
Newcastlelad

Hi everybody I was hoping I could get some other APS sufferers views on this.

After much research I convinced my GP to run the APS antibody tests. I came back positive for Lupus anticoagulant. He told me if I test positive in 12 weeks he would gladly refer from to a rheumatologist. Last week my second blood test after 12 weeks came back positive again but my usual GP who agreed to refer has moved on. I saw another GP today who I had seen before I had the blood tests where she told me I did not have APS. I was very reluctant to see this GP again but I thought now I had the positive blood tests she would believe me.

I started the appointment by telling her about the progress me and my usual GP had made and I had both blood tests test positive and could she please refer me to a rheumatologist. I was shocked at her reply she said she was not sure about referring me on as I have not got typical symptoms of APS. I have tons of APS symptoms. I told her I get a lot of superficial vein clots but only clot I thought was a DVT seemed to go away on its own in a couple of weeks after really intense pain. She in the end agreed to refer me but said it was probably a waste of time and the doctor will say I have nothing wrong with me. I was quite upset by this appointment.

So the questions I have about this situation are

I thought 2 positive blood tests 12 weeks apart was enough for a diagnosis and referral is this not the case?

Will a GP not refer you for APS until you have a bad DVT or stroke?

Has anyone ever had a DVT which disappeared on its own?

Thanks so much for reading and any information.

24 Replies
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MaryF
MaryFAdministrator

HI, Any decent GP should be referring you, I hope you can persist with this, if you can try not to get cross even though it is annoying, in the meantime write down your symptoms and medical history in bullet points, you can write to the GP, copying in the list of recommended specialists either over on the right hand side of the forum under 'pinned posts' or off this charity website: ghic.world/

If you have another appointment with the GP, or even a different one at the practice, take your most trusted friend, relative, neighbour or colleague with you to help you. I have done this for people in my community at times and it does help. Your other option is to refer yourself privately to one in your area, but this should not be necessary, however many of us have had to do it to get our NHS care back on track.

Don't give up, a lot of us have had to be firm and keep chipping away at the system. MaryF

KellyInTexas
KellyInTexasAdministrator in reply to MaryF

That’s really nice you’ve offered to go with members of your community to their appointments. That must have helped them tremendously. I really like that!

MaryF
MaryFAdministrator in reply to KellyInTexas

Not many, but for one or two that were literally at the end of the road. MaryF

rankin1st
rankin1st in reply to MaryF

Mary how do you get a private referral?

MaryF
MaryFAdministrator in reply to rankin1st

Hi which area do you live in? Some self refer to The London Lupus Unit, or perhaps a consultant in their own area who does private as well as NHS work. MaryF

rankin1st
rankin1st in reply to MaryF

Leicester, we gave her Dr goodings details and said ask GP to refer you there because of your concerns. GP said not necessary

MaryF
MaryFAdministrator in reply to rankin1st

Maybe refer yourself to The London Lupus Centre as a one off. MaryF

lupus-support1
lupus-support1Administrator

A shocking story!

This GP should be working with patients in the morgue!

Insist on seeing another GP. If necessary, contact the Practice Manager and make a complaint.

This doctor seems to think she is a god & can read the mind of a specialist she doesn't know! It's ignorant, arrogant and abusive to upset a patient. Don't be surprised if she suggests "Its all in the mind!"

Keep a diary.

Write down your clinical history, illnesses, not matter how trivial, from childhood.

Sorry for being terse but I feel awful with cellulitis!

Wishing us both better!

With good wishes,

Ros

She already has said its all in the mind!!!!! I suffer from OCD and I think I get discriminated against because of this. I was under a neurogenetics team for years because they thought this was the problem and she said to me if there is anything wrong with you they would have found it by now.

KellyInTexas
KellyInTexasAdministrator in reply to Newcastlelad

Please consider finding this and printing if off:

Clinical Case Studies

excerpts of a Blog on the Hughes Syndrome

( In commemoration of the 30th Anniversary of Hughes Syndrome)

Republished from a blog by Graham Hughes

The London Lupus Center

In particular, Newcastlad , I have in mind for you clinical case studies - Vol.IV

“It’s All in the Mind”

In concluding his blog about Mrs. LL, Professor Hughes wraps up this case study with his humble, “Hallmark Hughesionian wisdom,”:

“What is this patient teaching us?”

Lesson #6. Need a psychiatrist? Not on your Nellie! How tragic it is that in the 21st century, and 30 years after the discovery of Hughes Syndrome, so many patients have to go through this ordeal?

Who can say it better than Professor Hughes himself?

Thanks for the information. This is not the first time I have been accused of something being down to a mental problem. I had a undiagnosed b12 deficiency which gave me a really bad peripheral neuropathy and made my mental health go crazy. They said it was all down to my OCD going out of control until after they belatedly found my b12 was 93. Thanks again for the information.

KellyInTexas
KellyInTexasAdministrator in reply to lupus-support1

Hang in there Ros... really sending you the warmest of well wishes and thoughts right now as your body battles this infection. March first tomorrow- spring is very near!

HollyHeski
HollyHeskiAdministrator

Firstly you are right to fight!!

Secondly - please ask your GP If you have a clot will he be responsible - yes!!

I'm being over facetious!

Just request a copy of the referral letter before you take issue?

I had a similar issue with my GP recently, nothing to do with my APS, another issue, but he was treating me as a hyperchondriac!!

I caught him referring me with his diagnoses in writing, I had the amo to deal with him and put in a complaint, once I proved him wrong with a proper diagnosed from a specialist.

Theory here is follow what you believe....

You are right here xx

KellyInTexas
KellyInTexasAdministrator in reply to HollyHeski

🔥😡

Hi 😊

I'd honestly get in touch with the consultant I told you about and ask how to be referred into there - the 2 blood tests should be enough to diagnose APS and with that diagnosis you need to see someone specialised in those illnesses the consultant I told you about is an APS specialist and is named in this site and I think you maybe able to self refer into them but don't quote me on that, good luck with getting the help you need, hope you get sorted soon

Hi Bev after you gave me the information about the specialist I phoned her secretary after the follow up blood was positive and asked if she would be willing to see me. She was so helpful and said it would be fine. I told this to my GP and she said it is difficult to refer to an individual doctor but she is referring me to the same hospital so im hoping I see the specialist you mentioned.

There are so many doctors out there who will not commit to a descion about any autoimmune disorder. Keep on fighting do not give up on this, it's taken over 20 years for me to get a diagnoses after being told it's all in my mind, my age, having babies, that I have had this problem but it's gone now. I have had so many questions like are you depressed, do you Google your symptoms and also that Professor Hughes told everyone that they have APS, I was under his care for several years until he retired from the NHS. It all made me stronger and more determined to find out. Good luck, Carole

I have a little update about my situation if anyone can help me out. As I mentioned above my GP reluctantly agreed to refer me to the specialist bevjane74 so kindly told me about in my area. I have waited 6 weeks and nothing has came not even the erefferal letter you usually get not long after the GP appointment so I called the surgery.

The receptionist had a look through my records and told me the GP had phoned the APS specialist I asked about but it did not look like there was any referral coming. I can imagine from experience she would have not tried too hard to get the appointment on my behalf having mentioned in my earlier post the way she told me she thought it would be a waste of time. I'm super angry and upset about this as I'm literally failing apart I'm convinced the APS and it being undiagnosed for so long has caused me to get Avascular necrosis of my knees and hips. I can barely walk and I'm in so much pain. I have read this complication can happen in people with APS has anyone ever experienced this?

I'm going back to my GP this week to ask her in person what happened but I'm convinced she wont believe me. I'm at a total loss where to go from here anyone got any advice?

The only reason I can think the APS special did not agree to take me on is I have not got a history of lots of DVT'S. I have lots of superficial vein clots all the time but nobody has ever thought to ultrasound these. Is it possible to have APS localised to the superficial veins? I have had one incident where I thought I had a DVT but it cleared up in a week or so on its own. Thanks for your time and any help you can give.

If I were you i would first of all change my GP. I do not know how long time it will take to change a GP in England but in Sweden it will not take a long time and then if you explain your whole situation you have gone through and also talk to the Specialists office you were remitted to.

See your present GP and ask for info about the referral. Hope it is a knowledable Specialist (knowledable on autoimmun illnesses) she was asked to refer you to but only made a phonecall. How dare she be reluctant to a referral and I wonder if that Specialist is really knowledable of APS.....?!

Good Luck!

Newcastlelad
Newcastlelad in reply to Lure2

Thanks for the reply. Yes I'm definitely changing my GP!

Lure2
Lure2 in reply to Newcastlelad

If you only knew how many of us, that has been looking a long long time, to find a Doctor who is really knowledable of APS ........ It is a real fight to get to find that Specialist!

They must first of all understand that this is a clotting disease and that we must be properly and stable anticoagulated not to live in danger and just waiting for a PE, DVT, stroke or microembolie to happen. That said she or he must give you adequate treatment and take all necessary bloodtests (even sometimes for other autoimmun illnesses as they often go hand in hand like cousins). It is difficult to diagnose and treat APS.

It is an adventage if we try to learn and read as much as possible about APS. Then we also know if we are talking to a Specialist who knows autoimmun illnesses in practise also.

Once again: Glood Luck from me!

KellyInTexas
KellyInTexasAdministrator

Yes, I do get Clots of both the superficial veins and deep veins.

Superficial clots is also called , “ thrombophlebitis “ although my vascular surgeon tells me this is a very outdated term. It is seen in my scans.

You may need to go the the AandE for a scan .

Try a google search of AVN and APS. A lot will come up.

Also on ghic.world/ Dr Hughes talks about bones in his “ organ by organ” section.

Also in one of Dr Hughes monthly blogs- he dedicates it to AVN. It is titled , “Dem Bones “.

I am not sure which month it is but I believe it is in year 2018.

Thanks for the links Kelly. The only guess I have about not being referred is they are waiting for me to get full blown DVT's Not just superficial.

KellyInTexas
KellyInTexasAdministrator

You should be under a Rheumatoligist’s care. Other panels could be run . Sjögren’s, ANA, CRP, RO, Lupus early indicators ( I won’t go into all of these here) , thyroid, etc.

I’m sure you GP might have run some but only a Specialist would rum / interpret with the expertise required.

I would consider changing doctors ( I know it works differently in the U.K.) , go privately, ( it does cost money- why do that- or put a complaint in with the local regulatory commission. Is it PALS?

I can’t help you further, being American im limited from here on out. A British Admin will need to take it from here.

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