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Immune deficiency?

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Expand view Topic review: Immune deficiency?

Re: Immune deficiency?

Post by tree » Tue Oct 09, 2012 09:12 am

Hi Kamby - Welcome to the forums! Autoimmune issues are really frustrating. Many of us could have them, but they are really tricky to diagnose.
This board is probably the only place where a Mom can have an easy bout of HELLP. We do kind of collect the worst of the worst ;) Swing by and introduce yourself on the Ask The Experienced Board when you get a chance.

Re: Immune deficiency?

Post by Kamby » Tue Oct 09, 2012 04:22 am

I happened upon this site while looking for possible immune system issues/causes that may have lead to my body being highly suceptible to mold exposure & rare manifestations of it, but that is another long mysterious medical battle!

That being said, I have been doing TONS of research on autoimmunity disorders, causes, effects, symptoms, etc. and what I have learned is that there are not usually definitive answers for most of these questions! I do know that autoimmune disorders can react in strange ways! I have low IGG, but high complement numbers and recently had the worst reaction to a skin test the doc had ever seen. What this tells me is just because your immune system may appear "underactive", that does not necessarily correlate to a lack of response from the body. The basic meaning for autoimmune disorder is that the body's own immune system is attacking itself. To me, that sounds exactly the type of thing that would contribute to HELLP/PE, etc. But, again, we have a chicken/egg situation, because autoimmune illnesses can also be triggered by illness/injury so if any of us are suffering new issues after HELLP/PE, it seems possible to me that it could be caused by the episode. After all of my research, I am more certain than ever, that the human body is a complete mystery....even to the so-called experts!

For what it is worth, I am finding that the most reliable sources are doctors that have put their primary focus into one area (ie mold exposure related autoimmune issues). I do not know if there are any doctors that have chosen to focus on potential autoimmunities either causing PE/HELLP or resulting from it....but if so, that is probably the best place to start researching. It took me 2-1/2 years to learn in my Mold battle as I recently was directed to a doctor's website by a friend's sis-in-law who was severly exposed in military housing and sent to this doc. I saw & sort of blew off this site at the onset because his treatment seemed strange & now, after many, many tests/treatment attempts, found this doc to be the person who has the accurate info!!

For the record, I am the mother of 10 year old twin girls & suffered a fairly "easy" bout of HELLP syndrome (after reading some horror stories posted). The severe upper stomach pain started week 35, not diagnosed until week 36 as I was asymptomatic, my BP was normal as I was sent to the hospital for monitoring 2x that week! Finally, the third time I went to hospital they took blood/urine & I delivered 17 hrs later! The rest is a story for another thread!!

Re: Immune deficiency?

Post by caryn » Wed Mar 28, 2012 10:22 am

This disease is characteristic of human pregnancies, and there aren't a lot of tests for factors known to predispose otherwise healthy young women to develop it, partly because a big chunk of the problem comes from your partner's genetic contribution to the pregnancy. Our Experts aren't even universally endorsing testing as necessary - because the thing about this syndrome is that it happens to humans, with awesome regularity, in first pregnancies particularly.

Once it's happened to you, you need additional monitoring in subsequent pregnancies because odds are that you'll have a successful pregnancy, but your tendency towards "breakdown of maternal tolerance" has been unmasked.

That might be genetic, might be environmental, might well be *both* - and it's utterly characteristic of human beings.

So testing will probably just tell any of us, oh look, you're human, making babies with another human. Nothing to see here, in other words. ;) and the docs do not explain this well, in my experience anyway.

Re: Immune deficiency?

Post by alviarin » Mon Mar 26, 2012 08:48 am

Vicky,
Sorry I don't know about antithrombin results, but I've found this a good website for helping to understand laboratory tests:
http://labtestsonline.org/understanding ... n/tab/test

I'm sorry to hear the specialist didn't address all your concerns. It is frustrutating not to have an answer to the question "Why?", but I'm glad your test results came back normal. On a postive note at least you have been able to rule some things out.

Although there are no guarantees, your odds of a sucessful second pregnancy are promising: http://www.preeclampsia.org/forum/viewt ... f=19&t=331

Since you mentioned post-partum thyroid issues, I would definitely get a yearly TSH test to screen for thyroid problems. And if you ever decide to TTC again make sure to get your thyroid checked first.

Re: Immune deficiency?

Post by Vickyjayne » Fri Mar 23, 2012 02:22 am

Well I am none the wiser as to why I developed hellp syndrome and had to have an emergency c section at 37 + 6 where my 5lb 9 son was delivered.
The specialist has basically dismissed me and written with my results but has stopped there in trying to identify why/ what happened to me! Typical NHS- useless!

My results are as follows

Cardiolipin antibodies (IGG) of 2.2 (<5.7)
Cardiolipin antibodies (IGM) of 1.0 (<10)

Both these are normal.
Normal level of functional protein C, APCR, prothrombin gene variant and free protein S. the functional antithrombin 3 level was slightly raised at 133% (normal 75-125)
The specialist has spoken to various haematologists who say this result has no bearing on my hypertension/ pre eclampsia/ hellp syndrome.

Will hellp strike in my next pregnant (I've not been told of the probability % of it occurring again.
How will I be managed next time (not been told)
I feel so let down as again I have been let down and failed by the NHS
They are not willing to alleviate my concerns as to why I could have died or whether I will be properly monitored in my next pregnancy.

I hope others get the answers they want so desperately.

Re: Immune deficiency?

Post by alviarin » Thu Mar 08, 2012 04:29 am

Vickyjayne,
Pre-eclampsia and HELLP syndrome do raise the risk of developing thyroid problems, but there is also something called postpartum thyroiditis where your thyroid gland goes wonky in the postpartum period. It usually resolves in the short term but puts you at greater risk of developing thyroid problems later in life or during subsequent pregnancies.

If I were you at a minimum I would ask for an annual TSH (Thyroid Stimulating Hormone) test to screen for hypothyroidism as recommended by the Endocrine Society for women who experienced postpartum thyroiditis.

And since untreated thyroid disease raises the risk of pre-eclampsia if you decide to TTC again I would make sure to have a full thyroid panel run including anti-thyroid antibodies.

Good luck, let us know what you find out when you get your test results back.

Re: Immune deficiency?

Post by Vickyjayne » Fri Mar 02, 2012 04:51 am

When you say you had ear infections....I had them every month. I would often go swimming and then pick up an ear infection in both ears. My immune system was basically none existent. Ive had that much amoxicillin during my life that it no longer clears up infections. The consultant read my medical history and decided to run these tests as she believed there may be a link. I am frightened for my next pregnancy. If you have read my story...I was ignored and felt like I was moaning! I was told I was having normal pregnancy pains. I just want to get to the bottom off all my immune system problems and if it is linked to my hellp then I will finally have some explanation as I feel very angry, hurt and confused why hellp happened to me.

Re: Immune deficiency?

Post by Vickyjayne » Fri Mar 02, 2012 04:45 am

It's funny you should mention thyroid...when in hospital recovering from hellp I had a few I times where I would be covered in sweat. Like a fever when you have flu. (I had for many years 'night sweats' and this was a symptom investigated when there was a concern about hodgkins lymphoma. I was fine but these fevers were never explained. Anyway I had them again and I told the midwives I must have an infection somewhere. They checked my temperature which was fine and ran a check for infections but everything came back normal apart from my thyroid levels were abnormal. They were checked again by my doctor once I was back at home and they had returned to normal so it was put down to hellp affecting my thyroid. I'm not sure if they are checking my thyroid but they are doing anti coagulation tests, throbophillia, cardiolipin antibodies. I'm not really sure of what else but they took around 10/12 tubes of blood.

Re: Immune deficiency?

Post by alviarin » Wed Feb 29, 2012 12:36 am

Vickyjayne,
Good luck with your test results. I had antibody testing due to a high ANA but everything came back negative.

I'm hoping last year was just an "off" year and I won't catch everything going around this year. Though before I started on thyroid meds I was exhausted all the time. I was just wondering as part of your testing if you have had your thyroid levels checked? Other auto-immune disorders can make you tired too, but thyroid disorders seem to be the most commonly occuring.

Re: Immune deficiency?

Post by Vickyjayne » Mon Feb 27, 2012 04:52 am

I am undergoing similar tests.
To cut a long story short I've had problems with my immune system for years. I was diagnosed with chronic fatigue syndrome when I was 15. Had glandular fever 3 times! First time I was hospitalised for 7 days. Then had constant chest/ ear infections and was always on antibiotics. This led to an episode when I had incredibly swollen lymph nodes In my neck which along with other symptoms led doctors to believe I may have had hodgkins lymphoma. After biopsies I was actually fine! They tested for lupus as for years I had always been so tired and picked up every infection going around. I'm now 31 and after having hellp syndrome I'm being tested for antiphospholipid syndrome. I've read that hellp can occur when an 'underlying autoimmune problem makes antibodies attack the blood (cardiolipin antibodies) making it sticky which can then cause blood clots. They believe this is what could have made my pre eclampsia/ hellp syndrome occur. I'm awaiting test results but they take 3 months.

I personally think its no coincidence that I got hellp of it can be brought on by autoimmune problems. If I test for this I will need warfarin injections to thin my blood out and aspirin during my next pregnancy.

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