I saw my Lovely consultant on Wednesday. I have now tested positive on 2 occasions for anticardiolipin antibodies. He is referring me to Professor Hunt as he feels I need to see a specialist in APS. This is great progress as I originally asked if it was possible to be seronegative APS. He also said i was negative for my ena and ana and dna tests for Lupus.
He has prescribed me some iron supplements as i am also anaemic at a level of 6 I am not sure what that means exactly.
Please can you lovely people help me with questions to ask at my specialist appointment as I want to get as much out of it as possible.
Has any one had an appointment at Guys and ST Thomas' What can I expect at the appointment?
Should I ask about my daughters as they both have mottled skin?
Should I mention the nightly pins and needles?
There are so many other things whizzing around my head at the moment. He advised against aspirin for now, but it makes me feel so much better.
Thanks in advance
Merry Christmas all xxxx
Written by
pinkyandperky
To view profiles and participate in discussions please or .
Well done on getting a decent and timely referral, Prof Hunt is excellent! Take along any results you have, and letters, and perhaps write out your medical history in bullet points, mentioning any significant relatives, past or present with autoimmune disease, It is important to get your Ferritin and Folate to a decent level, when they re test you it may show improvement. Make sure also that you have proper testing for Vitamin D, B12, Folate, and the ongoing Ferritin plus your Thyroid. Also mention any current symptoms. I would mention that you feel better on the Aspirin, it will help with the evaluation of your current situation. Do let us know how it goes. MaryF
Yes you can ask your GP to do this, it is the best route, some of us do more advanced testing on here as a last resort, if we suspect our Thyroid is struggling, as the NHS nearly always only do the TSH, however for some this does show up with the GP testing, so a good starting point. Also the Thyroid does struggle a bit if your iron is low. Best of luck, do let us know how London goes. MaryF
If you've been referred to Prof Hunt you may or may not see her, you may see one of her team but they discuss all cases amongst themselves in their weekly meetings. I've been under Prof Hunt for a few years but have never actually met her although she did phone me at home earlier this year and was all over my case and it was a lengthy in depth conversation. Ask about everything that bothers you there is no point leaving anything out , no point coming out of the appointment and wishing you had mentioned something that you didn't. Write yourself a list to prompt your questions. I think St. Thomas's are great, very friendly, try to keep on time but understanding off the distances we travel. You'll have all the usual weight, BP, blood tests and a consult. No drama.
Well done on getting your results (not sure if I should congratulate? I felt a huge relief after getting my 2 positive results after over 4 years of trying to get a diagnosis)
I went back to Guys in the summer, it is a wonderful hospital, lovely staff, I did feel that I had enough time to talk about everything, I went with a list of symptoms, a brief history list (so that I did not forget anything important) and a list of questions.
The Doctor I saw was very kind, but as I had not had a clot (only recurrent miscarriages) he would not prescribe anything for my symptoms of joint pain (really bad hip pain) and awful fatigue, I also had balance issues, brain fog etc.
Interestingly, he said that they do not feel that the asprin I was on would be doing anything, they would not prescribe asprin now.
I had some benefit from asprin, helping with ocular migraines.
I continued with my 75mg of asprin daily and went to see Dr Kaul at London Bridge Hospital Privately. He was wonderful, I will always be so very grateful to him, he prescribed Hydroxychloroquine and Clopidogrel, I have had such an improvement, My hip pain is practically non existent and I am no longer asleep at 7.30 pm
I have been back to Guys for a follow up (now discharged re APS) they feel that the improvement is due to a placebo effect, there is no research to say that these medicines help with APS- that was what I was told.
I can not fault the service at Guys, just disappointed that they would not prescribe anything to try and help with my symptoms, going private was worth every penny.
Thank you for the information, I have suffered with hip pain for over 10 years and other joint pain and migraine and fatigue and lots of other symptoms. I hope they can help me.
No not at the moment in September had an appointment and I asked if I could take aspirin and the doctor said yes but last week my consultant said I don't need anticoagulants as my blood clot was pregnancy provoked. He said the risk of a bleed was too high. However aspirin really reduces the pain and pins and needles. It also helps with the general all over congested feeling. I can feel the difference since stopping already.
Thats exactly how i felt on asprin, better but still room for improvement, I stayed on asprin over 4 years until my symptoms gradually got worse, face tingling, balance issues like I had drunk a couple of glasses of wine, the hip pain was the worst, really deep hip joint pain, the fatigue was getting worse too. I also have patches on my brain scan ? What.
Dr Kaul advised me about the risks of taking medication, I was happy to take that risk, I feel so much better now, I would not want to stop them.
As others have said write everything down so you don’t forget anything and a list of questions to ask and a history.
I have seen a a few docs at St Thomas over the years and all have been very good.
As a by the by and completely off topic as I’m sure I’ve said before my 2 youngest kits are called Pinky and Perky, must be a Devon thing, Plymouth is my home town, can remember them building Derriford and the A38 which I still describe it as the new road!
It seems that some of the Doctors you have talked to do not understand APS.
If Aspirin helps with the balance- issues and headache, I can not understand how a Doctor could say you should stop 75 mg of Baby-Aspirin (that is enough!). Take it with food.
When is the meeting at Guys and St Thomas? If it is far away in time, I would recommend you to talk to your GP to be allowed to take a Baby-Aspirin for your pins and needles and headache and balance-issues. Before taking an anticoagulation-drug for APS we usually start with Aspirin 75 mg, as it may help for the primary issues we have.
If you take Aspirin you should tell the Specialist that you have pins and needles and migraine and balance-issues and also tell him that the Aspirin helps. That is important!
Write down anything that comes to mind regardless if you don’t think it’s important. Take a pad with you to put your replies on because it’s so easy to forget what’s been said. Good luck
I have at times recorded bits of consultations you would need the docs permission sometimes they say yes sometimes no, always worth an ask, I love my smart phone.
I always take my son with me and it's obvious afterwards he remembers things that went over my head and vice versa so it helps to have someone with you that you can discuss it all with afterwards. He also asks questions that I may not have thought of.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Manchester Specialist - Dr Thachil (haematology) at Manchester Royal Infirmary
Confused!
3 Miscarriages, was feeling Lost, But had Fantastic Experience at the Liverpool Womens Hospital :)
A Request From My GP For London Admin, Please, Regarding Specific Levels : Vitamins / Thyroid
How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!
