Trying for baby with APS: Hey guys... - Sticky Blood-Hugh...

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Trying for baby with APS

JojoWash
JojoWash

Hey guys..

I have had two miscarriages in 2019, one at 11 weeks and another at 7 weeks. After paying for it to be sent away came back baby did not have any chromosomal disorders. No obvious reason for miscarriage, I had they thrombphilia test and it came back positive for anticardiolipin antibodies, I have to re-test in 12 weeks to be sure.

What will they do? Are they likely to put me on aspirin and heparin before conceiving again or wait until I’m pregnant? Doctors are so busy no opportunities to just go in and chat! I will have to either wait for results or get pregnant again before deemed viable to waste doctors time. So I haven’t that option.

I’ve felt ill for many years, complete exhaustion and lack of motivation. Diagnosed many times as maybe depression or lack of iron but it doesn’t go away, I have headaches and my first migraine 3 years ago which now I have regularly, I’ve had a crippling chest pain in back that feels like my chest is being crushed, it’s happened since a young girl and lasts anything from 5-15 minutes, no rhyme or reason for it. Nobody seemed to take any notice but if they saw me in a episode of it they would take notice. It feels like a spasm of my heart. Do you think more is going on due to antiphospholipid syndrome?

25 Replies
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StickyBloodMentor
StickyBloodMentorAdministrator

Hi - So sorry to hear about your losses but its good that they have now diagnosed you and you will get a repeat test. Normally they would start you on aspirin I think if they know you are trying and then add in LMWH at about 6 weeks but again you would have to get that checked out with your clinic or Dr.

As you have already had two miscarriages then I would have thought they would take it seriously.

Do you have a APS specialist if not then I would find one so that you can feel confident in moving forward.

If you have another episode of your chest pain then video it but better still also go to the Hospital and show them too.

Thank you. Do you mean go private to specialist? I’m hoping nhs will refer me but a I seem to do is wait

StickyBloodMentor
StickyBloodMentorAdministrator
in reply to JojoWash

It does not matter if you go private or on the NHS as long as you are seeing an APS specialist. The only reason people are forced into seeing a private specialist is because either there is no NHS APS specialist in their area, their CCG blocks them from being referred out of their area or the wait is simply too long.

Another reason may be that the NHS specialist may not (Im trying to be tactful here) have such an open mind between the diagnostic and the classification criteria of APS (see post under Pinned Posts to the right of this page) which sometimes influences decisions on diagnosis and treatment. Going to a specialist of your choice "normally" ensures that you are seeing someone you have researched and has the same thought process as you do about how to approach things.

I appreciate that waiting is frustrating, however if you are living in an area where you can be referred on the NHS and its to a good Dr and Clinic then stick with it if you can.

I am sorry you have experienced the loss of your babies.

When pregnant the woman’s blood becomes more viscous (thick) so the chest pain could also be a symptom of something else you need to have checked out... if it happens again get yourself seen medically immediately ask them/demand to have an ekg if-not an echocardiogram done. Best wishes.

KellyInTexas
KellyInTexasAdministrator

Hi Jo,

Sorry you are going through a difficult time , but I do feel this will be a direction for getting your health improved for the better.

It will take patience ( quite a lot) and will be a learning curve.

You do seem to the bill for APS.

Since you have symptoms while not pregnant, hopefully you will be anticoagulated for life. ( deemed to have APS and obstetric APS.)

Normal , non obstetric APS is seen and managed initially by a hematologist who will determine the best type of anticoagulation for you . Usually this is warfarin. If it is warfarin, then the intensity needs to be determined. ( the INR needs to be set for you. With no history of an actual DVT/ stroke while this may be a topic of some legitimate concern with your consultant(s) so a plan and alternative options such as aspirin/ clopidogrel might be discussed instead.

It really is patient to patient dependent- family history is ( should be) taken into account, and your history taken into account.

A Rheumatoligist is very important to have on board also.

APS is unusual in that it’s a hybrid auto immune disease according to Dr Graham Hughes, in that falls squarely in rheumatology, hematology, and more often than not, neurology.

Please come back with any more questions you many have.

When you are ready to conceive again, it will be very important to be under the care of an APS specialist Obgyn Consultant.

Happy New Year, and May 2020 bring you the help you need for better health!

KellyInTexas
KellyInTexasAdministrator

Ps... yes, the cardiac symptoms are fairly common. The blood can become a bit too thick. It can become , “ sludgy” . Some will call this micro clotting. It used to be calked cardiac syndrome x. I have had this. I did not know what it was- about a year before my APS diagnosis.

I was sent to a cardiologist and structurally everything was fine. It was a mystery!

Now if my INR goes too low ( my blood becomes too low) it can happen. My cardiologist prescribes sublingual nitroglycerin tablets.

***However, this doesn’t mean you do not have another separate issue. Some APS patients Non infectious ( non bacterial) Liebmans Endocarditis. It can cause pulmonary hypertension, valve issues - vegetation . So it needs to be ruled out among other structures defects, etc. ***

Pulmonary hypertension and valve issues is a rare symptom of APS but I have it.

I wonder if you have very high bloodpressure - if you have - get it down, as that can be a symptom of APS. I had that before I was anticoagulated at a rather high INR and before pulmonary hypertension and my leaking heartvalves started. Stable with Warfarin.

Get a Specialist who is knowledable of autoimmun illnesses and especially APS and who also works with this clientel every day! Could be a Reumatologist or a Hematologist. The Neurologists, we have found here, do not always understand that the main problem for us, is our sticky blood, which has to be thinned.

Hi lovely, I'm so sorry to hear this, it sounds very similar to my situation. I had three miscarriages recurrently in 2016, they tested but didn't find anything, fell pregnant again in 2018, when I was 2 months pregnant I had a stroke due to meningitis and they found I had APS, I had to take aspirin twice a day (higher dose than the usual baby aspirin) and I had to inject fragmin twice a day, it was a long 9 months but completely worth it as I have a healthy 6 month old. I was lucky that my hospital has a specialist obstetric and haematology clinic who I was under throughout my pregnancy. I had a lot more blood tests than usual but I could handle that. I would make sure you get a referral to a haematologist too as well as obstetrics (don't let them palm off with just midwife care). I also had SVT (palpations) before they diagnosed APS which I believe are related. Good luck xx

MaryF
MaryFAdministrator

Hi, sorry to hear about your losses, hopefully now this is the right way forward for you, with your recent testing. Here is the charity website for you to look at!

ghicworld.org/

Lots of good information and more plans coming soon. On our forum we have a list of NHS and private specialists, over on the right hand side under 'pinned posts' and some listed on the charity website. It is vital you have a good guiding Hughes Syndrome/APS specialist who can help you proceed with a pregnancy, also many of us also have a Thyroid issue, so most good specialists will look at your Thyroid function, also B12, D, Ferritin and Folate, beyond the standard testing for Hughes Syndrome/APS etc. This paper is always a good read for those starting on reading the various information out there, currently. the-rheumatologist.org/arti...

Often the trio of disease is Hughes Syndrome/APS, Sjogrens and a Thyroid issue.

Best wishes for the New Year. MaryF

Thank you Mary! B12 deficiency seems to be a family trait both my mum and nan have b12 injections. My Nan has pernicious anaemia which caused a heart attack which ultimately killed her 10 years later as her heart started to fail due to damage from attack.

I can’t seem to get any help. I feel exhausted permanently and have regularly told doctors but they don’t really know what to say, for a while I believed I had the start of dementia as my brain just doesn’t work sometimes! Then it goes away but comes back again.

I also feel almost drunk at times with my balance and I slur my words or completely forget a word. My brain gets stuck

Lure2
Lure2
in reply to JojoWash

Too sticky blood! Get a Specialist!

KellyInTexas
KellyInTexasAdministrator
in reply to JojoWash

Very important and key component in your personal history.

My person experience is only a very experienced APS specialist hematologist and Rheumatoligist will clue into the importance of what you just typed.

This is where it becomes a ,” hybrid “ disease of hematology, neurology, and rheumatology.

I still become off balance when blood becomes too think. Word finding difficulties ( or stuttering.) Its called aphasia by the way.

I know it’s time to get an INR draw right away.

Dr Hughes told me ( and he’s written it before) that one lady does the cross word puzzle in the London times, and times herself.

She can know her INR by the amount of time it takes her to complete the daily crossword puzzle.

The brain is a very delicate end organ and any change to oxygen ( blood supply) is immediately felt. Same with blood supply to tiny vessels supplying nerves to / from spine for balance.

Have you noticed vision is a bit off when balance is wobbly?

Thank you all, it’s really interesting and I feel almost a break through for me. I honestly started to think I had some serious neurological issue, I’ve known something is wrong with me for sometime and thought maybe ME /chronic fatigue syndrome but saw there was no test that could prove it.

Maybe I should pay private but I have no idea who or how!

Lure2
Lure2
in reply to JojoWash

A Specialist of Autoimmun illnesses who works with APS every day. Someone knowledable. Difficult sometimes to find but so very important for your future.

nicolacrafty1 so sorry for your losses too. Nobody really understands the pain of miscarriages until they have experienced it.

Thank you for you advice x

Hi , my daughter going though the same thing . She had a stroke 4 years ago and tested positive . It’s under control now with aspirin . She has had a transplant to . She has had two miscarriages which was awful . She is under Manchester Royal thank god , they all had a meeting with Amy , midwife specialist , prof Bruce and nephrologist and have come up with a plan , they are altering her aspirin to 150mg & high dose vitamin D , she will have a scan every week at Manchester and closely monitored by the 3 depts . Amy does have the other issue of the transplant to deal with as well . Please find a good APS specialist it’s vital , trust me there’s a lot out there that don’t have a clue . We live about an hour away from Manchester but worth the drive for peace of mind . University hospitals are great because they tend to have all the experts under one roof and can see all your notes at any time.

I was diagnosed 5 years ago with APS after numerous strokes , I ended up paying private to see prof Hughes team in London and they made sure I was seen at Manchester for all the different ailments APS throws at you , it’s well worth it .

I’m sure with the right care you will have a beautiful baby xx

Lure2
Lure2
in reply to amy1808

Well said!

I was diagnosed,21 years ago after numerous miscarriage's and have a 21 year old daughter from the success of heparin injections and aspirin so please try not too worry as you will have your baby, it is possible x

Yes yes

Hi. I actually didn't discover I had APS until I lost my first baby at 24 weeks. (Had already had first DVT 2 years before but was thought to be cause by contraception) When I asked them to test me to figure out what happened they found a blood clot in the umbilical cord.

Then a year later when I found out I was pregnant again, they put me in the care of a high risk midwife and I started aspirin and fragmin injections at about 6 weeks and then throughout the rest of my pregnancy. I now have a healthy 5 year old 5.

Keep you head up, and fingers crossed for you. !.

You have had so much great advice given to you here. This wonderful group is like a lifeline to many of us. Never give up!! X

Thank you guys !

Hi Jojo, I’m sorry to hear about your losses - I know how you feel - I have obstetric APS which was diagnosed after 2 miscarriages, I went on to have a 3rd when on treatment for the APS - however that was due to Turner syndrome rather than the APS. I’m now nearly 20 weeks pregnant and prior to pregnancy and during the 1st trimester I was under the care of professor Regan at St Mary’s in London - I was on aspirin outside of pregnancy but when we decided to start trying again she advised I come off of it whilst trying to conceive as it can affect implantation. Once I found out I was pregnant I went straight on to 75mg aspirin and LWMH from date of BFP and I had scans every 2 weeks from 6-12 weeks. I’m still on the heparin and will be until 6 weeks after birth and they have upped my aspirin intake to 150mg daily. (Which my obstetrician advised is more effective to take at night) I was also on cyclogest pessaries and prednisolone until the second trimester (but for other issues including high NK cells which were prescribed privately rather than via St Mary’s) I did a whole host of things to improve my egg quality and get my hormone and vit levels to optimum levels prior to ttc this time too and am on a range of supplements too - can message you with the info if of interest rather than make this message even longer! 😂 wishing you all the best xx

Thank you lovely! I’m on all sorts of supplements at minute x when did heparin start for you? X

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