GP Ignoring Me

[RabbitMum_1965]

I'm female mid 50s. I found out I had wildly fluctuating BP over 24 hours, a brain aneurysm, autoimmune thyroid disease, low Vit D (less than 20, UK measurements), raised parathyroid levels - all last year.

I lost my 1st baby at week 17 due to placental abruption, 'severe' pre-eclampsia 2nd pregnancy - baby delivered week 34 (emergency c-section), put on aspirin for 3rd pregnancy as the dr said I had 'sticky blood'. 2nd child (3rd pregnancy) also delivered by c-section, week 36, due to placental insufficiency. Both babies were less than 4 pounds in weight.

I have a livedo reticularis rash on my legs and with the pregnancy history (mid to late 1990s), I think the conditions that were detected last year, may be due to APS.

When the obstetrician said 'sticky blood', I didn't pay much heed. I didn't know what it meant but agreed to go on aspirin as both I and my daughter (2nd pregnancy) very nearly didn't make it.

My headaches have been worse recently, (after 2 head injuries) and I find that it's only aspirin that helps.

How do i get a formal diagnosis of APS? My GP isn't interested. I've awful neck pain also for which I've been given co-codamol today. The only other med I take is Vit D and Ramapril for hbp (started 3 days ago).

I also have bilateral basal ganglia calcification, which one of my friends said can be caused by slow flowing blood.

Could it be APS? Am I too old to be tested?

I hope someone can advise.

[MaryF Administrator]

Hi and welcome, you need to tell us roughly where you live, so we can recommend specialists near you, take a look at our charity website which has a lot of information. ghicworld.org/ It is in your GP's interest as well as your's to have the right specialist to guide things, some of us save up and go to The London Lupus Centre, which did help get my NHS care back on track. Your GP clearly does not understand the disease, you could perhaps send them a link to the charity website, if you can email their secretary, marked for their attention. MaryF

[RabbitMum_1965 in reply to MaryF]

Hi MaryF, thanks for your reply. I'm based in Scotland UK.

I think it's APS so to prevent clots, I should be on apirin but that won't be good if the aneurysm ruptures. My GP has been a GP for 40 years - she said she's never heard of it. So I wrote her a letter with my past and present history. I should have included the link within the letter, in retrospect. I'll call her tomorrow.

[HollyHeski Administrator in reply to RabbitMum_1965]

Hi, further to what Mary has advised, I would really like to stress that with your history and your aneurysm specialist advise is really needed. Aspirin is an antiplatlet, anticoageration may be better? If your GP hasn't heard of Hughes/APS, then referring you to someone that does specialize is common sense?

Your never too old to be tested, we are all so individual what works for one doesn't work for another, decisions need to be made with someone who can look at your whole picture.

If your GP wont refer you do you have a consultant keeping an eye on the aneurysm? They will know all about APS and would also need to know your taking the aspirin.

You deserve the best treatment and understanding.

[MaryF Administrator in reply to HollyHeski]

Agreed, and have sent the list of specialists in Scotland by private message, this needs a team approach. MaryF

[veganworld]

Hi

Some very good advice from Mary and Holly and can't add much else other than it is worth getting yourself to a specialist even if its a bit of a fight. You are not too old. I really hope you get this sorted. I had to insist and got myself to London and changed my life. I also had doctors who didn't know what it was but it was always the older doctors. I also read a book that the London clinic told me about called sticky blood explained by Kaye Thackray available on Amazon. I know its hard when you keep getting fobbed off but do push on. This is a lovely group/forum and you will always get support here even if it's just to vent your frustration keep posting and asking questions.

Kaz x

[RabbitMum_1965]

Thanks for the advice everyone. Yes I'll need to fight. I left a message for my neurosurgeon and hope he's more open to discussing this. Hope everyone is well during these difficult times.