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calling all blood clotting, cytogenetic and hematology experts... advice needed please!!!

(18 Posts)
jules99 Tue 04-Sep-07 19:25:21

i know its a long shot but i have read through the archives and i hope someone may be able to answer my question,

i have just had my 3rd miscarriage and i am trying to find out the reasons why this might have happened,

i have had early blood testing done and there are a few results that are not quite right,

firstly, my mcv and mch levels are high, i dont think this is a problem,

secondly, my thrombin time shows as low, my understanding of this is that it actually means my blood clots too quickly, am i wrong about this?

thirdly, my protein s levels are high, can find lots about psd but not much about high levels,

but all the other stuff, lupus, thrombophilia (ect) seem to be ok,

so any advice?

i am driving myself google crazy here...

3littlefrogs Tue 04-Sep-07 19:40:48

Have you been assessed by a haematologist and/or a rheumatologist? I have read your post very quickly as I am going out in a couple of minutes, but I am wondering about Hughes syndrome, but without having more specific information about your history and what tests you have had done, i can't be sure.

If you want to email me:

3tadpoles at gmail dot com

I will see if i can be a bit more helpful.

jules99 Tue 04-Sep-07 20:37:34

thankyou so much 3littlefrogs,

i have read about hughes syndrome and i have sent them a message asking for more info,

the other things i should mention are that my dad has 'sticky' blood and has had 2 heart attacks, one at 42 and one at 54,

he now has 2 stents (sp?) and takes plavix (sp?) to thin his blood,

also, i suffered the most hideous migranes as a young teenager, from about 12, full flashing lights, loss of all colour vision/sight, some episodes lasting for days, lots of time off school, tablets (ect) and was put on the pill at 15 incase it was hormone related, it was decided that the time i was allergic to cheese so i have not eaten it since and the last migrane i had i was 23, i am 31 now, never been p/g before recently,

that was the thing that i was most shocked about when i first read the hughes website, the mention of migranes shock

the giddiness thing is also interesting as i have problems with stupid stuff like going up and down the stairs, i need to hold the rail and often find myself going step by step and the suddendly doing 2 by 2 steps and then back to step by step hmm

i have a crap memory but i have never thought anymore of it than i have a crap memory grin

the visual disturbances are odd also, i have them but only really occasionaly, it feels like i am going to get a migrane and then it goes away, at times i get scared driving as i feel like i have lost my bearings but then it is all ok again,

on to the corned beef skin hmm lol... i have this in the top of my legs but dont we all grin

so far i am ruling out the heart attacks (but my dads history worries me) and strokes (god forbid)

now another thing... when i had the d and c 2 weeks ago (it was horrid but i am ok) i have since developed a lump in the back of my hand, it has been painful and my fingers have felt tingly on and off for 2 weeks now, so yesterday i went to the doc and she thought i had a bit on the canular that had snapped off in my hand and sent me to the hospital, 5 hours later and many confused docs later, i am told it is a blood clot caused by the canular being put in/taken out, it is 2 cm long, about 5 mm wide and looks like a piece of something solid (hence the left over canular theory) it moves as a whole when you put pressure on one end forwards and backwards, left to right shock

now while i know you must be thinking you have a mad lady on your hands, i know some thing is not right,

the 1st m/c was at 8 week, a mm/c and no h/b present,

the 2nd m/c was lost at 5 weeks, natural, no warning,

but the 3rd one lasted till 11 weeks, i was on 75 ml asprin on the advice of my doc, no pain, no bleed just picked up at a routine scan, i had been scaned since week 4 and all the signs where good, h/b, growth, normal sac, movement in the later weeks, babes was perfect, just looked asleep at my last scan, i was devistated, can not believe this has happened sad

i have had tests for anticardiolipins (not sure if this is the same as hughes) but they are ok/normal,

so sorry for this marathon message but i decided to post it on here in the hope it may help someone else one day, someone who too may be searching for answers and they might just find this thread,

this must be my longest post to date... smile

3littlefrogs Tue 04-Sep-07 20:47:02

It definitely sounds as if you need proper assessment by a haematologist and probably a rheumatologist. Has anyone mentioned folate levels, factor 5 leiden?
Has anyone mentioned sjogrens?

Sorry to mention this on here, but alcohol intake can be a significant factor - not suggesting you are overindulging, but a normal amount for one person may be too much for another.

Will have a think......

HTH and doesn't confuse you too much.

I am so sorry you have miscarried 3 times - you must be heartbroken. I hope your doctors can get to the bottom of this.

Have to go off line for a little while now, but will check back later.

jules99 Tue 04-Sep-07 22:23:45

many thanks 3littlefrogs,

i know i need to talk to a haematologist so they can explain it all to me properly but can you tell me what a rheumatologist would say and why this would help, just wondered smile

folate has been a problem for years, seems to have leveled of now and for the last few blood tests it has been fine

i was having b12 injections in my 20s for suspected pernicious anaemia and they helped to get my levels back to normal, i also had a biospy done to rule out crohn's and celiacs, the raised mcv has always been a problem,

i have always been a drinker, too much by most peoples standards i know, but recent liver function was serum gamma gt level 22 iu/l which i am told is good/normal/healthy

i stopped drinking the minute i got a bfp on all 3 pgs, it was hard for the first one but the next 2 did not really bother me, infact it was good not to drink, i had lemonade or hot chocolate instead smile

i know i need to address this and maybe next time me and dp should think about stopping all together even before we ttc, it is hard though as given our history and the sadness it has brought i dont want my life to be all about just ttc (iyswim)

my sister has been to the doctor recently and she is had loads of blood tests done just incase the problem is hereditary, it will be interesting to compare her results against mine,

as for the other things you mentioned what is factor 5 leiden? (just googled and i think i may have been tested but will ask again) and sjogrens? (more googling and lol at vaginal dryness, soz, should not be lol but i dont think that is a problem blush )

oh the shame...

also me and dp have had blood tests done to check for balanced translocation / balenced translocations (?) i think that is what it is called, i found a great site here that expains it in simple terms,

and also the little one has been sent for testing so i hope we will get some answers as to why it happened this time,

see my thoughts are at the moment that if the little ones tests (and me and dps) prove to be all perfect in a chromosomal sense that at least i will be able to concentate the on other stuff,

blush at the long post x

3littlefrogs Tue 04-Sep-07 22:55:17

A rheumatologist specialising in soft tissue/autoimmune disorders such as Rheumatoid arthritis, sjogren's syndrome, lupus and Hughes syndrome (named after professor Graham Hughes)would be the correct person to give further advice after the haematologist has looked into everything else. The haematologist would normally consider referring you to a rheumatologist once all the haematology possibilities are exhausted.

It is all a bit difficult to sort out on here, but you definitely need to see a haematologist specialising in clotting disorders, with a view to a referral to a rheumatologist as well. It sounds as if you need to be seen at a teaching hospital.

If you want to email me and let me know where you are, i might be able to help further, but i do understand that you might want to keep things anonymous.

It can be difficult when you need to be assessed and managed by more than one specialist - the obstetricians need to be involved too, and they all need to communicate with each other.


sparklygothkat Tue 04-Sep-07 22:59:06

I think that PSD is only a problem if the levels are low. I have PSD, and have had 2 miscarriages, and 3 premature births. Am currently 30 weeks pregnant and have to inject Clexane daily and am on 75mg asprin too.

jules99 Tue 04-Sep-07 23:39:17

thankyou 3lf and sgk,

i know from what i have read that psd can be a problem but i can not understand what having high levels rather than low levels means,

i have drove myself, my dp and my family mad with my endless search and my constant need to know an answer for why this has happened again sad

if the results show babes had a x/y problem then i would know, if the results show that babes was perfect then i would know...

only this time granted, i know i will never get the answers i want for the first 2 but i NEED to know this time, i NEED to say goodbye,

i want to grieve but i cant until i know why...

the worst result in my mind is an inconclusive one sad

i will mail you 3lf,

thankyou for all your help,

it is not that i want to keep this anomyous, of course i dont want everyone to be apart of my sadness but i do think/hope that by posting it might just help the next person that comes along in my position x

jules99 Wed 05-Sep-07 12:41:50

anyone else with ideas/experience in this area?

RubySlippers Wed 05-Sep-07 12:47:45

3LF has really helped me recently - she is a star

i am so sorry to hear about your MCs

i have a history of clotting - am on my 3rd DVT - mine are so far unexplained

that thing about migraines is really interesting - i have them and last Monday after i had been re-admitted to hospital with terrible leg pain, i had the worst migraine i have had in ages ... i also had another this week

i hope you find the answers you are looking for - it is worrying

jules99 Wed 05-Sep-07 13:03:03

yes ruby, 3lf is a star,

you sound like you are having a rough time of things yourself,

3rd dvt shock

it is the not knowing that is the hardest,

i am waiting for a referal to a r/c m/c clinic so hopefully they might be able to help more

i just feel that if i go with some ideas then i might get somewhere, knowledge is power and all that...

take care smile

RubySlippers Wed 05-Sep-07 13:06:57

i am fine - resting and dosed up on lots of blood thinners
keep us posted on how things go

lulumama Wed 05-Sep-07 13:11:44

just wanted to say how sorry i am that you have suffered another miscarriage sad

interestingly, i had low protein s when pregnant,

I am rubyslippers twin, have had 2 supsected DVTs, our mum has had one DVT... we all had full thrombophilia screening, but nothing came up

think it is bloody unlucky

take care xxxxx

jules99 Wed 05-Sep-07 13:46:26

oh i never knew you were a twin lulu,

learn something new everyday on here smile

i am showing high levels of protein s hmm

no idea if this is a problem in p/g,

i have just had my appointment through the post today for LWH at thier r/c m/c clinic on the 1st oct,

hopefully they might have the tests back for me and dp and the little one by then,

i so wanted you as my doula smile i posted about it a few weeks ago on the p/g after m/c thread,

never mind... maybe next time hey x

lulumama Wed 05-Sep-07 14:35:05

i didn;t see that, sweetie

fingers crossed for next time.


jules99 Wed 05-Sep-07 19:00:39

thanks lulumama smile

one day, one day soon, it will happen...

i know giving up is not an option x

julezboo Wed 05-Sep-07 19:59:57

Jules99 - I am sorry to hear about your losses.

I have been diagnosed with Factor 5 Leiden, hetrazygous (sp?) there is two forms of it, if I remember correctly, the hetro form is where the gene is inherited from only one of your parents and the other (forget the name) is from both.

I had a mc at 22 weeks when I was 18 - awful time.

I then went on to have my little boy 9 weeks early when I was 20. Pre-eclampsia, developed into eclampsia, i fitted and went into a coma, resulting me having a mini stroke. The baby also suffer IUGR as a result. (Fully recovered now)

I then went onto to have 4 early mc's with a new partner. I knew it was my fault (figuratively speaking!) Because of th late loss and early birth. I finally had testing done and it showed up I had FVL.

When i got pregnant again i took 75mg of aspirin and fragmin (form of heparin) injections daily from 4 weeks. It worked, although I still had bleeding from 5+4 to 20 weeks, My baby boy arrived safely in Feb this year.

The cornbeef skin you talk about happens to me, I get blue lips, bruise easily and bleed alot when i cut myself, also have very heavy AF's (not sure if that is anything to do with FVL)

I have stiff joints, fingers and toes the gp has put it all down to FVL

But we got there in the end and you will too One thing I was aware of the is the pill is not a good idea. I was given the mini pill but told its totally my decision to take it and I am at higher risks of DVT.


Julie x

jules99 Wed 05-Sep-07 20:55:27


thankyou for your post, it all helps smile

i can not believe you have been through so much sad before they tested you shock

i will ask about f5l at my consultant appoinment next month,

a m/c at 11 weeks was hard enough but one at 22 weeks shock i cant even begin to imagine sad

to hear stories of success makes me want to carry on, hard as it is, i will never give up,

so thankyou x

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