When to the hematologist on Friday. I had to drive 2.5 h to see the nearest hematologist. He said the 3 specialists I went to before were just internists. He told me that the PE I had in my early 20's was provoked and the positive APS tests are coincidental. He did say he was going to repeat the test (I already had 2 positives). He said that none of my symptoms are related. Headaches, migraines, blurry vision, pregnancy complications, enexplained seizures.... He kept shaking his head an looking at me like I was crazy.
Oh and there is no relationship between Raynauds phenomenon and APS.
I recently found out I am pregnant again and my GP had put me on heparin (same dose as my last pregnancy). Hemo said to discontinue the heparin until after birth. My GP seems to trust him.
I hope he is right that he baby will be fine but...I can't help but to think I will probably lose this baby or have another life threatening clot to prove him wrong. When I left I was so upset I was shaking & I cried almost all the way home. I don't know where to go from here. Just wait and see what happens?
Written by
SassyOne
To view profiles and participate in discussions please or .
This guy clearly does noit know even the basics about This illness I would not stoo the heparin until you have had expert advise. You. Could emasil the specialists at st Thomas Hospital and tell them what has happened and ask for advice. You can download some information about Hughes from the internet or take. Some leaflets to your GO point out tje symptoms and the. Links with Raynauds. There is too much at stake here to act on the advice of this. Haemo. Unfortunately we cannot afford to be passive and coopersative. In face of doctors who know less. Than we do. I know. It is hard to stand up to them when they seem to have all the power and we can doubt ourselves but you do have strong evidence of this illness. And you need competent care. Could you take a friend or relative who has good assertive skills with you tio see the Gp. It can really help to have back up when tou feel emotional and vulnerable. There are exceLlent leaflets on the Hughes foundation site which will cover the points you need. It really is important to get the right support for you and your baby. I feel I am sounding rather bossy here but I don't think this is a do what you think best situation. I and others have paid a heavy price for taking bad advice in the past I really hooe this helps. Do keep in touch and let us know how you get on. Thinking of you Ann
Yes some good advice above, I would not stop the injections and the contacting of St Thomas and gathering of information for GP would be good. How frustrating and frightening for you, I am truly sorry, and we are all here for you. Mary F x
oh sassyone i really feel for you.......please please don't stop the heparin was the 1st thing that came to mind when I read your post cause the 1st thing any doc does when you're pregnant with APS is get you straight onto heparin.........you must feel a bit like you've hit a brick wall after that appointment........but don't give up & please don't stop the injections........hope your next appointment is with a doc that knows a lot more about APS than that last one does.....it was my ob/gynae doc that diagnosed my APS!!!! =) jan.xx.
you poor thing how dare he ... omg i would want to sue the man!! he has not got a clue what he is talking about.. looking after yourself and baby is priority following the good advice given above then i would report him & your concerns that he is not up to date with current practices based on research and scientific evidence...
give your gp as much info and the telephone number for ST Thomas's once he is clear about what treatment you should be receiving and the huge risk to you and your baby if not carefully treated and monitored that will get you the medical support you need and a prompt for him to fight your corner and refer you asap to st T's
Good luck and take care are you under the care of a rheumatologist as well as this dinasour heamatologist? kathy xx
ps just read you are from canada so scrap the referral bit sorry
is there anyone on this site live close to you in canada who can recommend a rheumatologist? given your history i think rheumy more imp than heamatologist... be worth seeing if Prof K has a canadian expert as part of his collabarative apsACTION who your gp could contact kathy xxx
Hi Sassy, please trust your gut on this one. I am in the medical field and I can assure you that all Doctors are not created equal and that they allow their egos to cloud their judgement. I'm not a doctor but I worked with them. I too had the same demeaning experience with a specialist and instead of banking on his verdict.... "congratulations, you don't have APS because your titer isn't 40 but please stay on the aspirin"...., I simply dismissed his opinion altogether because although he is a self professed 'expert' in APS a red flag went up for me when he ignored all my classic symptoms( long exhausting list) focusing on the bloodtest alone making it clear he is not familiar enough with sero-negative APS to claim to be an expert. At this point the only person I trust to make a life threatening decision regarding my health....is me and my intuition. Not that I would 'doctor' myself but I go with my gut and if I don't feel right about it I dig deeper, go further. I lost 4 babies at different stages many years ago had several clotting episodes etc. and know the extreme pain and loss. You need better care than what he offers. Please feel you deserve that and all the best to you.
Hon, definitely don't wait n see! Stay on the heparin!
Your gp thought enough to test you, so should have some faith at least in the bloods and your clinical symptoms. Although can have negative bloods and still have what is called sero negative Aps!!! Your symptoms are so similar to many of us on here, The haematologist is, wrong! Wrong! Wrong!!
Go with your gut n keep fighting, ask gp if he would consider contacting St Thomas's with your history and seeing if they'lle help, or at least suggest a specialist that knows what they are talking about!
Professional egoes get In the way with some consultants, I once had a rheumy who diagnosed me with Aps at one appointment, then asked who diagnosed me with Aps at next appointment, you can imagine my response! Needless to say I haven't been back! So lack of knowledge is the same across the world!!
We very lucky to have St Thomas's In the uk!
We have to be our own advocates and put information in front of doctors!!
funny about the dr asking who diagnosed you. I had an eye dr. who would shake my hand and say "nice to meet you" each of the five times I went. Fifth was the last.
All they needed to do was look at their own records. how hard could that be?
Siveinvan is from Canada and, like you, she has been at her wits end trying to find someone who knows what they're talking about. She emailed London Bridge Hospital and Professor Hughes gave her some names of doctors over there. It may be worth your while emailing her to see if she can help.
I am SO GLAD everyone is basically agreeing; I was so shocked to hear about this I almost asked for your number to call you. I absolutely agree, there is NO WAY I would stop the Heparin. I don't know about the APS clinic in Toronto, but when I wrote Dr. Hughes at the London Bridge Hospital, he did write back basically telling me to trust my knowledge and instinct. (In fact, said that lymphocytic colitis was indeed connected to Hughes after the stupes hematologist told me otherwise). I will dig up the address. Do you have enought Heparin to last you and if so, for how long? Please message me if you want to talk in person; I would be happy to chat and I have a free long distance plan. We can figure this out with you!
You are going to be fine, my darling. It's clearer to those of us who are not in the thick of it, and that is exactly why this group is such a godsend; when we can't see, the rest have eyes.
Love Colette (Sive in Vancouver, home of the APS doctors in denial)
Thank you everyone. I realize he is a specialist, but it is my life and baby at risk. I will go back to my GP, but I think my OB will be I the most help I am hoping. I will see her by the 26th at the latest if not sooner. I really had my hopes up that this doctor was going finally help explain & treat all my odd symptoms & take care of me. I felt very let down that he really seemed to think nothing was related to APS and things were a mere coincidence. He wouldn't even consider them as a factor. I really hope he's right but fear he is not.
"DITTO!" You have (correct me if I'm wrong 2 positive blood tests, PE, miscarriages and he thinks you DONT have APS? He thinks these are all coincidental!!!????
Bit of personal info: my Father (who was a doctor) was dissed by a psychiatrist during WW2. This psychiatrist was called in to evaluate my Dad when he kept getting leg ulcers and DVTs (as well as butterfly rashes in sun exposure and what we now call liverdo rashes) when he was out marching, or after he got shots prior to overseas deployment.
This psychiatrist told Mom she should divorce this guy as he was a nut case. I believe this seed of distrust is what eventually lead to their divorce 20 years later. An awful lot of emotional pain by an awful lot of people resulted from this psychiatrist's arrogant and inaccurate diagnosis. My Dad left the Army after WW2, went to college on the GI Bill where he crammed enough hours into semesters so he could get his BS and then his MD on the Bill. He became a GP and chose to return to West Virginia to help the poor and sick back here in my poor home state. I did not see him from age 6 to age 20 when he helped me recover from one of my own mysterious blood diseases. He avoided the sun like it was poison. He stayed out in it once to watch me jet ski in the Gulf and ended up with this horrid rash on his face. A nut job? I don't think so. Lupus or APS? Probably.
That psychiatrist, if he is alive now, doubtless never knew the consequences of his blind arrogance. As an army psychiatrist, telling the Army (and his wife) that Dad was a "nut job" was a convenient diagnosis for him. It was not accurate.
Doctors do abuse their power. Not all of them, and of those who do, not all the time. But it happens.
How old is the heme you just saw? I have some questions for him:
Does he think APS is a "real" disease? And if so, what are his diagnostic criteria, since they obviously differ from established criteria. And if not, is his professional assc of hematologists up there in Canada OK with his decision to pretend a disease he doesn't like, doesn't in fact, exist. Or that criteria established by professional associations are not, in fact, valid.
This sounds pretty egregious to me. I realize you might not want to carry any water here, but I certainly hope that his lapses earn the attention of the (I assume there is one) Canadian Board of Hematology or Rheumatology.)
Find someone else!
And -- if you have the energy (understandable if you don't) Complain!
It is hard but you NEED to stand up for yourself. You can't just sit back and accept that you may lose your baby.
If the GP refuses to prescribe Heparin than at least keep taking aspirin.
If you can possibly afford it then go and see Prof. Munther Khamashta at London Bridge Hospital. Pregnancy in Hughes patients is his speciality and he won't stand for any nonsense from other 'so called' specialists.
Sadly many of us have had to fight for correct diagnosis and treatment. I am so sorry that you have had to join this club but we are all here to support you and share our experiences and successes.
How sad it is that these medics are so willing to risk a babys life - i would rather air on the side of caution and take the stuff than take a chance, these are just feotus' to the medical proffession,and just 'nature' taking its course - how very wrong of them. I would see an obstetrics consltant rather than a heamotologist, and whatever on earth does he think it take for one of his patients to be treated for aps if blood tests arent enough to prove you have it. I was told on a clinical evidence basis that young strokes, and miscarriages are enough even without a positive blood test are enough to diagnose - how thick is he - sorry for ranting it gets me so very angry - this is your childs life - do not trust him x good luck x
Please, please, please do whatever you can to get the right care for yourself and your baby. Put yourself first and be firm and polite to get treated properly....otherwise you are heading for disaster and that is NOT an option.
Big hugs and good luck! Do not take no for an answer, this is your life and you deserve to be treated better than this fob off, which results in no health care. Be strong!
GET ANOTHER DOCTOR! I had FOUR miscarriages! Try to save your Baby! So many Doctor's are Idiots! Sometimes 'they' say I have MS, Depression, Bipolar or IBS and Mirgraines, instead .....when I actually have Hughes/ASPS and have had positive tests for over 16 years with 6 TIA's proven on a brain scan! Doctor's often do not believe in Hughes or have never heard of it! Rhuematologist understand it and a Ob/GYN should at a University Hospital....Go to Big Hospital!
Well, I hope this isn't chiming in too late in the day but i just want to add MY VOICE T all THOSE WHO have SAID TRUST TOUR INSTINCTS ADN INISIT ONA DOCTOR WHO CAN HWLP. I HAD AN UNDIAGNOSEDE aps pregnancy WHICH ENDE IN EMERGENCY C-SECRION oops caps lock sory about that, then multiple TIAs which qwer misdiagnosed as postnatal psychosis abou which I am stuill furious as they rtreatede mwe wiht a drug qhich brings on strokes..then gues whta happened!! DO NOT let idiot arrogance get in the wwya of whta ouy need. You have many people cheering you on here. Be the kind of woman who, when your feet hit the ground in the morning, the devil thinks 'o crap...she's up!'
I am sure the heparin I took while I was pregnant with my 2nd child stopped me from having another miscarriage after having four pregnancies which lead to me miscarrying. I had to go to Liverpool Well Women's Hospital, they were great and they helped me with anything that I wanted to know or was unsure. I even had a weekly scan to see that all was well, which it was even though I had to stop taking the heparin after 8 weeks as I was allergic to it. I came out in huge rashes all over my body, knees, belly and even legs came out in huge rashes. I think even after 8 weeks of taking the heparin this secured the baby's growth and stopped me miscarrying, also I took small dose of asprin as well as heparin. I can't urge you enough NOT to stop taking any of the medication you have been on until you get a second opinion. Listen to your own body and that of your unborn child, don't gamble on your health and your baby. Good luck with everything.
If need be get your GP to contact St. Thomas' for advice -really put your foot down and demand it - it is your baby's (and maybe even your) life on the line here and they should understand that...even say if you came off the heparin you would be out of your mind with worry and your mental health would suffer and you couldn't take that amount of worry for 9 months...get a second opinion etc etc-
I don't test positive - but for both pregancies was treated as if I did (Fragmin and frequent growth scans) ...for second pregnancy OB consultant wanted to reduce no of growth scans (cos of negative tests) - got a haemotologist in to talk to me 'put my mind at rest' - the haemotologist agreed with me and I got the no. of growth scans I wanted.
Even if you didn't have APS - you have had a clot -provoked or not - you obviously have an increased risk of clotting (or say if it was after a flight - every person who went on a plane would get a clot) - so you should be on the heparin...
Good Luck and don't take any nonsense... really difficult when your hormones are flying round etc - and don't worry about crying - have hysterics if need be! What I did for strength to fight - Imagine you had your baby in your arms and someone wanted to hurt it ...you would do anything to stop them - I know I'd kill if necessary - picture that and you can challenge them...and win...
hi all - great support for Sassy - i dont know about the U.K. but here in the states every time i see a new specialist the hospital sends me a form on how i veiwed my appointment and asks all kinds of questions ! if they dont do that there sassy after you get a competant doc -i would write a letter to the people overseeing the place of your appt. and let them know for the sake of others this guy may see in the future. he definatly needs some educating.. good luck with your pregnancy . stay well my friend _________________ jet
Thank you everyone for all of your support. I haven't done much more than read this board for a while. So many of you gave me advice I should have followed. My previous MC will never be recognized because they were early and never confirmed by a dr. The blood clots in my lungs were "provoked" an the APS blood work was coincidental. The possible TIA's would need to be confirmed by MRI. The seizures, spots, blurry vision, migraines are not caused by APS. I'm such a fool for letting this dr give me care.
All 3 of my Dr's overseeing my pregnancy stood together. Both my GP and OB said the Hemo was knowledgeable and trusted his advice. I told them how I felt and what I thought. I said I hope he is right.
Yesterday I had my first ultrasound. It didn't go as expected. They wouldn't give me any information and they moved the monitor so I couldn't see. They got another tech. They wouldn't answer any questions, they just said the Dr will call you in the morning.
I'm sitting here kicking myself for not listening to my instincts & fellow Hughies. Today the Dr said the baby has no heartbeat it stopped growing a little past 7 weeks. Just after I stopped taking heparin. I'm devastated. Tomorrow morning I will have to choose how to deal with it and find out what specialist I should see. I don't want to go back to that Hemo. I'm so angry and broken right now.
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.
sorry 
Just seen Professor Cruz with a result I think ?
Feeling deflated...
Is breathlessness a symptom of APS?
I'm new here - and glad I'm probably not crazy afterall
