I had eclampsia last year and since then I have had anaemia twice, my thyroid has been hypo to the point of needing medication adjusted 3 times (despite being quite controlled before pregnancy) and I've just been diagnosed with pernicious anaemia. It was suggested the pernicious anaemia may be attibuted in part to anti-convulsants (I was given mag-sulphate so not sure this counts?). Just wondering if this is the norm after pregnancy, coincidence, or quite usual after pre-eclampsia?
Wondering if anyone has had longer te... - Action on Pre-ecl...
Action on Pre-eclampsia
It has been 20 months since I had my son 5 weeks early due to pre eclampsia. After I had him I was left with chronic chest pains, swollen legs and high blood pressure. I am on long-term treatment for high blood pressure, this is in the form of a daily tablet and six-monthly check-ups via my GP. At my first check-up they identified thyroid issues, however at my last one they said it had stabilised. I'm unsure if it's because I have lost 2 stone inbetween. My chest pains and swollen legs continued after six months and I was eventually admitted to hospital and diagnosed with multiple blood clots in both lungs. A respiratory specialist put me on a series of injections and tests, I now take warfarin and although my lungs are clearer, I still have chest pains and a swollen right leg. The specialist diagnosed me with a blood disorder called lupus anticoagulant, and said he couldn't rule out me having this as an underlying condition prior to the pre eclampsia. For me, it's hard to know whether the health problems I suffer from now are linked to pre eclampsia or not, as there is no certainty either way. What I do know is that being overwight is a contributing factor, so I'm trying to lose another 3 stone to take me into a 'normal' BMI. I'm hoping this will mean that I will eventually be able to come off the blood pressure tablets, but I have accepted I will definitely remain on warfarin long term.
Hi sorry to hear about your problems, I had Pre-eclampisia during my pregnancy, luckly I developed a DVT stupid thing to say but if I hadn't my son wouldn't have survived he was born five weeks after I was admitted.weighing 867 gms now 31 with a son of his own. the reason I am replying to you is that I really think Suise that you may have Hughes syndrome, not sure if you have heard of it, but its on the Healthunlocked web site, maybe worth you taking a look
Thanks Karen, I've had a quick look and see lots of similarities. Will do some more reading and possibly go back to my GP for further details. Thanks for taking the time to reply to my message, I really appreciate it!
Glad it may have been of some help.please let us know how you get on
Ps the treatment can be Warfarin the INR for most people with Hughes syndrome should have an INR of about 3.5
For people with no blood clotting problem and not on Warfarin has been explain to me like this their blood without medication is like full fat milk, People with say heart attack should have semi skimmed and people with Hughes syndrome need skimmed milk. Hope that makes sence.
When you ask your Dr copy out some on the information from the Hughes foundation web site to take with you as you would be surprised that not all Drs are aware of it
Good Luck Karen xx
Thanks Karen and Susie hope you get some answers Karen x
I lost my baby at 24 weeks due to severe pre-eclampsia on 31st May 2012.
I am now on a really low dose of lisinopril tablets for blood pressure.
I am using the self service machine in my doctors to monitor my blood pressure and I am due to go and see the nurse for a blood pressure check tomorrow.
I am finding that within minutes my blood pressure can fluctuate from prehypertensive to low.
Has anyone else experienced this?
I'm really sorry for your loss Kathryn, what a really tough time it must be.
Not exactly like that but mine went from very high last year (with the eclampsia) to normal, and now to too low. One of my friends had pre-e too and her blood pressure is still on the high side 8 months on but is slowly coming down. L
I had residual high blood pressure that gradually got better and was back to normal about 8 months later. Interestingly though my mother also had pre-eclampsia with me and she developped high blood pressure again at the age of 55 and was told that it is very normal for people who have had pre-eclampsia to suffer from high blood pressure in later life - obviously a fair percentage of the population do too!! so you could never say it was definately due to the pre-eclampsia but she is slim and healthy and there is no family blood pressure issues. All the best.
I have suffered long term memory problems since the birth of my first child. At one point my memory had a span of 3 months. Prior to the pre-eclampsia it was perfectly normal. I have had trouble with my kidney since unexplained and have been put on blood pressure tablets to help it. I had PE with my daughter in 2008 much worse than the first time. Since then have gone on to have multiple blood clots on both lungs with no obvious cause. I am no on warfarin for life, however the warfarin has made a dramatic improvement to my memory. I have been tested for Hughes and it is not that although I fit a lot of the symptoms. Lupus also runs in my family. But also have been tested and it is negative. Prior to PE I was fit and healthy. but it is difficult to say of these things are a result of it or would have happenend anyway.
I had pre-eclampsia with my second child more than 20 years ago, at 28 weeks, and my baby girl died (first pregnancy was fine - my son is now 30). I had slight problems with my kidneys afterwards, but that cleared up. However, my blood pressure has NEVER got back to normal - and it was fine before I had pre-eclampsia. I have had every test going, some done at the excellent Freeman Hospital in Newcastle by a Cardiac Specialist, but they are still unable to find a reason for my high blood pressure. Eventually they put it down to work-related stress, but 18 months after giving up my high-powered job to become a very relaxed home-based online tutor, it's still high. As far as I can see, it seems to have been caused by the pre-eclampsia and for some reason it's never got better. However, the good news is that the Cardiac Specialist gave me a prescription for medication which I would apparently probably not have got if my GP had been prescribing, and it works well without side effects.
I would just like to mention that the test for Hughes syndrome ( Antiphospholipid syndrome) is not always positive, the test is not 100% in diagnosis and some people are treated with Warfarin with just the symptoms, which usually improve with an INR being 3.5 or over
i had my second case of pre eclampsia with my 3rd pregnancy. i had it with my first came on very suddenly at 32 weeks. this time i knew by how i was feeling very early on at 17 weeks, noone would listen until i was admitted at 33 weeks i begged them to deliver my daughter as i knew something was wrong with me. at 35 weeks lebitalol was having the oposite effect they wanted and both my dystolic and systolic bp were raising very quickly causing my to have what felt like someone sitting on my chest. they delivered my healthy daughter but i had no urine output i was pumped full of diffrent drugs to kick start my liver and kidneys again and luckly after 6 hours function started to return. i have noticed over the last month or so that my body isnt workign as it should, i either dont go to loo for days or need to all the time. also i have pains in my right lower rib all the time like its cracked, i still have bought of blured vision very reguly and im dropping things alot. im tired all the time doc said it was down to having a baby but she sleeps 8-8 and has done since 8 weeks. i also forget what im doing and saying half way through a sentance and sometime find it hard to find the words for things as everyday as a plate or door. i have headaches on a daily basis.
also the back (behind left knee)feels tight and uncomftable all the time.
i shall be going to docs but i dont think he will beleive me
HI Sarah 84
I know this is a long shot as this was posted 3 years ago but I was hoping to find out if you ever found what the problem was and how it played out for you. I'm currently having much of the same symptoms as you after having preeclampsia. Pain under and in my bottom rib, blurred vision, dizziness, memory problems, coordination problems. I'm getting nowhere with the doctors.
Wow, there are some really worrying stories here. I had pre-eclampsia last year - was admitted at 33 weeks and delivered at 34+2. I had an appointment with a specialist at St Thomas's in London through APEC's expert referrel scheme who was really helpful. She said that having had pre-eclampsia my chance of having some kind of cardiovascular disease later in life has doubled. She also tested my blood for the lupus test, which having read all the above, I guess can be an indication of Hughes Syndrome. She said that the the lupus anticoagulant test can determine if there are any underlying factors ("sticky blood") that can increase the risk of getting PET again or whether it was, for me, just first pregnancy bad luck. Now knowing that I have a higher risk of cardiovascular disease, and with a family history of strokes I do worry about what the future may hold. But I know that I can, to a certain extent, help to prolong high BP etc by trying to be as healthy as possible.
It took doctors 2 weeks after I delivered to find the right combination of medication to get my blood pressure under control. But I was off all medication 6 months later. One thing I noticed was that I had really sore knees for about 10 months afterwards. I wondered if it was to do with all the swelling that I'd had. I bought myself a home BP monitor which I use occassionally, just for peace of mind.
Sarahd84, I hope you get some help from your GP.
I had my little girl three years ago and I haven't been the same since. Although I (fortunately) had had nothing majorly serious, it does seem as though my immune system is completely shot at. I still have dizzy spells, blurred vision, aching muscles etc but the most damaging thing is chest infections - the last bout of chronic chest infection lasted over 8 months! I struggled to breath, I was like a an 80 year old attempting to walk the dog. I cannot help but think it is all related as I was never ill previous to the pre-eclampsia.
Hi. I had preeclampsia and now at 14 months since I gave birth by cs I m still swelling and this can happen severel times a day like swelling going back to normal and after a time swelling again. I developed preeclampsia at 26 weeks of gestation so really early and two weeks later my daughter was born .now Im really struggling to loose weight. I wonder if anyone knows something.
I am 55 and had pre eclampsia with both my boys over 20 years ago. My bp went back to normal. Fast forward to last year and I found out I have cardiac disease in one of my arteries and also have peripheral artery disease all over my vascular system.
I have no obvious or novel risk factors. There is a thought that my p/e and bp over the years since has damaged my arteries and allowed build up of stuff in them. Whether I was susceptible to the p/e due to higher bp or the other way round I do now have damaged arteries.
Although it’s only a thought- I do think it’s worthwhile checking up on your bp as the years go by and if you see it rising go to your GP.
Best of wishes to all the mums with new babies out there.
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