possible auto immune disease? please help.. i need my life back!

doctors began running tests on me about 8 months ago due to devastating pregnancy losses. my first pregnancy was in 2008, i delivered my son at 20 weeks, doctors were unable to stop my labor and my water broke. my son died 22 minutes after he was born. i hemorrhaged and the pathology report showed a severe infection and bleeding around the placenta. since this was my first loss, doctors told me it was probably bad luck and that we could try again within 6 months. 8 months later i got pregnant only to miscarry at 5 weeks. doctors told me it was too early to even begin to know what happened and if i wanted, we could try again. 2 months later i got pregnant. doctors assured my husband and i we would be taken care of. i was seen by a maternal fetal specialist once a week and a high risk ob once every 2 weeks. i had frequent ultrasounds and cervical scans. at 16 weeks, i went into labor just like i did with my son. doctors could not stop my contractions. my daughters brain hemorrhaged and she died before i even got to see her. since my 3rd loss i have had tons of blood tests done.

chromosome analysis on both my husband and myself, both normal. all lupus related test are negative and have been re-tested several times. b12, vitamin d levels all normal. negative for antiphospholoid syndrome. the only thing that stands out on my blood work is a positive ana and a positive ssb. however, it does not show a titer or any other details. i just went to see a new rheumatologist  who did a complete physical exam, the things she said she was concerned about from that was my extreme muscle weakness in my legs and she said she thinks there is something wrong with my SI joints in my back. she did an x ray and said she would know more in a week. also, it appears i have bursitis in my left knee. i do have dry mouth and severe vaginal dryness which suggested sjorgrens to her, esp since i had the positive test. however, sjorgens does not cause the pregnancy issues i had. it can cause a heart block in the fetus though. she re tested my ana and ssb to get a titer and also did something called a double stranded dna test. she said she would call me in a week with results.

does anyone have any ideas? i am getting desperate.. i just want to be able to have a normal life and have a family, i am only 22 and to have my children ripped away from me in such devastating ways is heart breaking, i just want to know why...

[thyroidian]

Hi sorry i didnt get back sooner only i have been poorly.

I would say that when you do get pregnant, make sure they test your LA, and ACA. for antiphospholipid.
Then if it comes back positive then they should treat it with an aspirin a day.
I have heard a lot of women with antiphospolipid being treated with an aspirin a day, and having a full term successful pregnancy.
But i am not a doctor and you would have to take this up with the doctor looking after you in pregnancy, but as soon as you know you are pregnant, get tested straight away then if you test positive treatment can start straight away.

Most of your blood test are testing clotting.

But then i noticed your TSH being 0.31, this is a bit low in my ref ranges.

Have you got a reference range on the blood test, because different labs use different ranges.
But were im from 0.31 seems low to me.
Do you have a thyroid problem?
Have you had a full thyroid profile? like freeT3, FREE,T4, along with TSH.

Have you had any hormonal testing done also?
I am wishing you well for your further tests. and hope they find some answers for you.

bEST WISHES
Nicola.

[MamaAng]

I don't have any answers, just compassion.  I lost my little girl at almost 17 weeks and had another miscarriage at ab 9 weeks (baby never developed past a fetal pole).  I had 3 healthy kids before all of that and I absolutely can't imagine having to go through it without healthy kids to keep me going.  I hope you get the answers you seek.  They did a ton of bloodwork on me when I was admitted with my daughter and nothing came back abnormal, nor did the karyotype on her.  

I am just now trying to figure out my own autoimmune stuff that has come up in the past year.  Nothing has shown + on my bloodwork, no ANA, sed rate is fine, etc. but I have other stuff that has come up.  

I hope you get answers, and most of all a healthy baby in your arms.

[thyroidian]

Have you had an anticardiolipin blood tests done?
Have you been tested for antiphospholipid syndrome.?

You may have tested negative for the antiphospholipid, but the antibodies can wax and wane.
Which means you can be positive on one test and negative at a different time.

Have you had LA bloodtest, which is the Lupus anticoagulant blood test?

Sorry to hear of your losses, but i would push to be tested again for the APS, and also Lupus anticoagulant, and anticardiolipin.

Good luck,

Nicola

[megancannon]

These are some of the blood tests i have had done and results, i am not sure what some of them stand for but maybe you will know.

PT=13.4 (high 11-13) *should i be worried about this since my result was slightly higher than the high??
LAC=NEG
Factor V Leiden=NEG
Prothrombin gene=normal
ACA=NEG
Cf Screen=NEG
TSH=0.31
UCS=NEG

Those results were from 2009. The next set are from 2010.

LAC=NEG
ACA=NEG
Anit-B2-Glycoprotein=NEG
ANA=POSITIVE
SSA=NEG
SSB=POSITIVE

Also had a chromosome analysis on my husband and i and both were normal.

My new Rheumatologist was confused as to why on the ANA and SSB there was no details and it just showed positive so she re-tested last week and i will find out soon, she also did a double stranded dna test.

I saw a different doctor back in March and he tested me for a ton of stuff, did all lupus tests again, the APS, etc also checked my b12 and vitamin d and both were normal.

so far the only abnormal things i have had were the ana and the ssb. i am confused

[want2bik1]

I believe the body can heal itself it you give it what it needs.  I do not know anything about your lifestyle but only you can heal yourself.  I suggest you look at your enviroment and make it as health as you can.  Eating healthy is very important and should consist mainly of raw fruits and vegetables which have the vitamins and minerals your body needs to heal itself.  Google words like Nutritional Healing, Detoxification, heavy metal poisoning, fasting, artifical sweetners, and food additives.  There are many things you can do to heal yourself.  We make ourselves sick with the bad things we put in our body.  Knowledge is the key and I wish you the best.  

[megancannon]

i do not drink, smoke or do drugs, never have. i eat well, stay hydrated and stay active. of course eating healthy and having essential vitamins are important but i have seen tons of doctors and specialist to deal with not only the issues with my health but the complications with all of pregnancies and i just don't think these kind of issues would be caused by things i am putting in my body. pretty much anything can be bad for you if you over-do it anyway.

[luppylupus]

I agree with tyhtroidian when I was in my 20's I also wanted to have a family yet I ended up having 6 misscarriage and one birth who only lived 3 hours all because I had anticardiolipid antibodies. most doctors either don't check for it or don't know what it is please have your doctor check for it once you know if you have it there are medications you can take so you have a healthy child.
Cassie

[megancannon]

My doctors have checked it several times, but only after my pregnancies and it is always negative.

Can it only become positive when i am pregnant? And, if it does is there anything they can do to fix it once i am pregnant already?

i am terrified to get pregnant again. because what if i do and that test is still negative and the same thing happens? i can not take being pregnant for 5 months, having to deliver the baby only to have him/her die. after having that happen twice and one miscarriage, i just can't. i just wish they could figure it out.

i have gained so much weight, i am still not huge, but i am bigger than i ever was and have stretch marks everywhere from my pregnancy and no baby.

[karajo]

We all grieve at the terrible loss of your precious babies.  And know how terifying the thought of getting pregnant again would be for you.

Has anyone mentioned either progesterone supositories or micronized progesterone?  Both are natural progesterone you can get w/ a prescription from a pharmacy or a compounding pharmacy.  

[thyroidian]

Hi sorry i didnt get back sooner only i have been poorly.

I would say that when you do get pregnant, make sure they test your LA, and ACA. for antiphospholipid.
Then if it comes back positive then they should treat it with an aspirin a day.
I have heard a lot of women with antiphospolipid being treated with an aspirin a day, and having a full term successful pregnancy.
But i am not a doctor and you would have to take this up with the doctor looking after you in pregnancy, but as soon as you know you are pregnant, get tested straight away then if you test positive treatment can start straight away.

Most of your blood test are testing clotting.

But then i noticed your TSH being 0.31, this is a bit low in my ref ranges.

Have you got a reference range on the blood test, because different labs use different ranges.
But were im from 0.31 seems low to me.
Do you have a thyroid problem?
Have you had a full thyroid profile? like freeT3, FREE,T4, along with TSH.

Have you had any hormonal testing done also?
I am wishing you well for your further tests. and hope they find some answers for you.

bEST WISHES
Nicola.

[megancannon]

I am not sure what other test I have had done. The first rheumatologist that i saw did like 23 blood test but i did not get a copy. I should give them a call and get one though. However, my new rheumatologist went over it with me and the results and i don't believe she mentioned anything about thyroid test. What is the TSH? If mine is low, what does that mean?

My maternal fetal specialist did tell me about aspirin. They told me with my next pregnancy to start taking a baby aspirin once a day from the day i get a positive hpt, he also mentioned heparin and progesterone injections and also mainly bed rest for my pregnancy. I am not recommended for a cerclage because i am at high risk for infection and my main problem is i start contracting extremely early.

What possible problems could i have with my thyroid that could cause pregnancy complications along with my symptoms (joint, muscle pain, frequent infections, muscle weakness, fatigue etc.)?

thank you for your help!

[megancannon]

i have done some research on the TSH levels and i am kind of confused as i am finding different results.

One website says that the current AACE guidelines recommend a reference range of 0.3-2.5. Which would mean my 0.31 is very close to the bottom of that range. But then it  goes on to say that the levels that fall within that range may not be normal for certain individuals.

Then i found a website that says normal TSH level is 0.4-4.0, underactive is 2.0 or more and thyroid disorder is 0.5 and 3.0

my levels fall into none of those categories.

i am so confused!!!

[thyroidian]

Hi.
In england the normal TSH. range is 0.4-4.0 so you being 0.31 would indicate an overactive thyroid. But this would have to be backed up by a FreeT3 and FreeT4 blood thyroid test also.

If you go by the AACE you are right at the bottom end of it being normal. and further thyroid blood testing should of been recommended.

Have you had a full thyroid profile done?

TSH is a Thyroid Stimulating Hormone blood test, TSH blood tests are really pituarity gland blood tests, and they tell the thyroid how it works.
But if i would of been your doctor, i would have done some thyroid blood tests, to check all round.

If you do some thyroid blood tests, make sure they do the FreeT3, and the FreeT4, along with the TSH.

Hope this has helped you, and if i can help you further justgive me a shout.
Im sending you best wishes
Nicola

[megancannon]

thank you for all of your help. i am going to talk to my rheumatolgist tomorrow and ask her about it and if we can do some more testing.

i think it's better to be safe than sorry, so i'd rather rule something out than just leave it alone without ever looking into it.

[thyroidian]

Good luck, for tomorrow, i hope they find out the problem for you.
Dont give up seeking, and like they say knowledge is power.

I am wishing you well, and if you need me just give me a shout, if i can help you in any way, i will.
Best wishes.
Nicola

[megancannon]

so, my doctor called me yesterday. every single test she did came back normal! my ana which was once positive is now negative. my ssb was at 14 and she said that is not high enough to be considered anything. my sed rate was normal, double stranded dna is normal. she said at this point they can't find any evidence of me having any diseases, autoimmune or other. so we are back to square 1 with trying to find a cause for my pregnancy complications.

i do have an appointment on the 23rd though for my thyroid. i asked my rheumatologist about my TSH test and she said that is a little low so i am going to see my doctor this month so she can do more blood test,

i am just getting desperate for answers!! thank you for all your help!

[thyroidian]

Hi.
I have heard about ANA being positive then negative. That can happen with antibodies, i think its down to how the immune system works.

Have you had a full blood count also? to check for anaemia, and platelet counts, along with white blood cell count?

When you see the rheumy on the 23rd get her to run the full profile for thyroid, this being FreeT3 , FreeT4, TSH, along with thyroid antibodies.
When they are done ask for a copy of the results and please post them to me and i will have a look.
Also ask her to do a full blood count, along with B12, and Vitamin D. if possible.


Im wishing you well, and hope you further testings go good.

Keep me posted
Nicola

[megancannon]

i am not sure if i had a full blood count or not. i know my vitamin d and b12 have been checked and those were normal. i have had so many tests i have seriously forgot lol i need to get copies of everything though.

i am seeing my primary care doctor, my rheumatologist said there was no need for her to do what my pcm came do. which is ok with me cause my rheumatologist is 3 hours away and my pcm is 10 minutes. so hopefully she will just check everything again for me. but i will post results as soon as i find out.

[thyroidian]

Good luck. For further testing.
Keep me posted.
Nicola