wobbles do you have lupus?

[Carolina]

Hi wobbles! i was reading one of the posts there about chemical pregnancies and i noticed you mentioned lupus? I was wondering if you were ever diagnosed as having it or not? I have arthritsi and have been under investigation for possible lupus for about a year now. My ana anti nuclear antibody test always comes back positive i get ill often kidney infections, flus, tonisiltis every couple of months always tried and run down.
I think i had a miscarroage last year at 6 weeks, (i never did a test) but was 2 weeks late heavy bleeding svere pain and what looked like a cashew nut in the toilet bowl (sorry tmi) i was quite distressed at the time and spoke to a nurse. My doctor has refered mt to see a gyno aswell because she thinks i might have endometriosis.

This is only my second month ttc and i am going to the doctors tomorrow to talk to them about it. Ive read on the internet that people with auto immune disease tend to have more miscarriages especially early on due to their imune systems being overactive attackin good cells aswell as bad ie. the baby.

Do you think this could have been the case with you?Did the doctor give you any meds when ttc?

Sorry about the rant! People in my family have had still births too so ive been always worried that I would have problems.

 

[Wobbles]

I had blood tests done for MC investigation when they took my bloods I had a low hCG level which was another chemical pregnancy so you may as well say I was borderline pregnant! My results came back as borderline positive for lupus.

I was given fragmin to inject at home.

They explained to me that some woman will only show for lupus whist pregnant and may get a negative result if the hCG level result was a not pregnant. Things moved on from there and they retested when I had no hCG present which was negative so the fragmin stopped. I was to have this repeated on any further pregnancies and have been tested twice through this pregnancy both thankfully being negative again so didn't really experience much about lupus. Easily treated though if your tested for it.

Taking lupus out of it I do think I have immune issues but they were never caught wit the bog standard NHS tests I think they coudl have done so much more for me and certain tests are not available without spending thousandsssss! One test I wanted would have taken us back at least a grand!

Are the investigating you then or just speaking to your GP?

 

[Wobbles]

Forgot to say I was on baby aspirin too inc. this preganncy up until I got a negative on the second test. This is ablood thinner but should only be taken if you have spoke to your GP or consultant.

 

[Carolina]

im sseing a rheumatolgist due to the arthritis who is a specialist of lupus n other utoimmune problems. My ana test is always positive but was sligtly less the last time. I asked about it today an she said its low which is good. I mentioned still births in the family and she said that soetimes people with a high ana test are more likely to have still births. She said i wouldnt be considered high risk because although its positive its within the lower limits. She said when people do have a high ana test they are recommended to take aspirin to prevent clotting/thin the blood so that makes sense (why you were put on it). Im getting bloods done on day 21 of my cycle to check my immunity to rubella (she thinks it should be ok) and to check hormone levels to see if im ovulating.

As for the consultant i see shes not too worried i had loads of tetsts done like anti-dna, rhuematoid factoe etc. and they were all negative (except for the ana) but it could be positive due to the arthritis. Shes seeing me every 6 months because she does think 'something is going on". Im not seeing her again until march but the GP today did say to mention to her if i was pregnant/ttc when i next see her becasue they would be more up to date any problems which could occur.

The GP did ease my worries a bit by saying as I havnt had any problems yet and becasue they worry more if i had still births rather than family.

If/when i do get a bfp i will get them to retest the lupus tests to see if anything shows up then!

 

[Wobbles]

I must admit I never really looked into it much. One of the members here (RachieH) explained alot of it to me. I just stuck with my baby aspirin and carried on TTC On this pregnancy I was in middle of moving and took baby aspirin off my own back when I moved here they were lovely and seen to me quite quickly and got a consultant before i even registered with the GP! He was pleased I'd started it and told me to stay on it. I was tested twice for lupus in the first and second tri i think and until the second test came through i was told to stay on it then if negative off!

I think most times going on what you have told me you may not run into any problems - fingers crossed you don't. Sounds like they are taking care of you which is a good thing the way they work sometimes for some girls (NHS) is appauling!

If/when i do get a bfp

You will - positive thinking

 

[Carolina]

Thanks wobbles! I was born with these illnesses which is quite rare so i think thats one reason why they take notice because im 'interesting' to them. Over the years though ive had to be very stern to get some doctors to take me seriously. I know my body and I can tell with somethings wrong! Sometimes I have to bully them into giving me a urine test when i just know i have a kidney infection and then they do it and im always right Although thats usually when you get a locum doctor! There are two really good doctors in my surgery and a couple of dodgy ones so i just avoid them! The nhs is a nigthmare soemtimes!

When you have your baby (exciting!!) you should get the gp or a specialist to monitor you and redo those tests because my specialist told me the results fluctuate as it is flare up disease!

 

[Wobbles]

LMAO @ you have to tell them! Awful isn't it! Even our ectopic I had to take a clearblue in with me ffs! They made me feel so loopy it was untrue!

I think the best one so far is showing my MW where the HB was and it *was* there!

Im off consultant care now but any concerns I go back - been back once since I was put back onto MW care only. I will defo mention it though thanks for that

 

[Carolina]

no problem! i imagine if we had private healthcare we would know exactly what was wrong i cant believe you has to bring the test in with you what idiots!!

 

[Wobbles]

Should have billed them for it shouldn't I lol Muppets!

 

[Carolina]

i was considering going back to university to do a degree in medicine because some of those doctors are such idiots and i like the whole detective side of it....think it was just pms though and a half hour of madness think im having a career quarter life crisis

 

[Wobbles]