31 weeks, antibody test positive but not rhesus disease - anyone had this?

(15 Posts)
WoolyMammoth55 Sat 14-Nov-20 16:05:35

Hi all, this is pretty niche I guess but I'm struggling to find advice and would really appreciate any thoughts!

A couple of weeks ago my MW did a blood test - said it was for "iron levels and to check for antibodies". I am Rhesus negative BUT had a blood test already which has confirmed baby is ALSO Rhesus negative, so I understood there to be no risk in this pregnancy, no need for Anti-D etc. I did mention this but she just said "this is for different antibodies" so I went with it.

She then called me to say that iron levels were fine but the antibody test was positive - there is a risk to baby of having rhesus disease, aka haemolytic disease of the newborn. She told me I'd be hearing from the consultant and there'd be more frequent monitoring to ensure the antibodies weren't harming baby. However, she is now on leave and I've just had a letter from the consultants saying I'll be seen on December 8th - which feels like a long time to wait for "frequent monitoring", especially with no information!

I'm massively confused since EVERYTHING I can find online says this can only happen with Rhesus negative mums and Rhesus positive babies (e.g. here www.nhs.uk/conditions/rhesus-disease/) which I've been told isn't my situation.

I don't have contact info for the consultant's secretary, so I've called maternity triage - they were patient & sympathetic but just said that they don't know anything and to trust the consultant's judgement... I'm just really aware that antibodies attacking the baby in utero can be really serious and it feels worrying not to understand what's going on and to have so long to wait to find out.

A potential complicating factor is that I have Hashimoto's so I'm not sure if it's my thyroid antibodies that have been detected, or if these could be hurting the baby... None of the MWs I've spoken to understand this at all, they are just happy that my thyroxine dose is keeping TSH levels in line, but no one can tell me if my antibodies are being monitored or if they could endanger the baby.

So feeling lost and scared, basically! Any advice gratefully received <3

OP’s posts: |
MimiDaisy11 Sat 14-Nov-20 16:17:24

I read up on rhesus disease too as I'm A- blood group and I too thought it was only an issue if the baby was rhesus positive. It specifically states that on the NHS website. It's not good that they didn't fully explain things to you. Sorry, no advice as haven't been through it.

WoolyMammoth55 Sat 14-Nov-20 16:33:13

Thanks for the reply @MimiDaisy11 - yes exactly. I'm totally confused and also really scared that it's something rare/potentially serious which has been missed by the consultant team. sad

I think realistically I'll probably try to reach the consultant's secretary via the hospital switchboard on Monday morning to see if they can give me a phone appointment to explain. It's going to be a loooong wait until then! Gah.

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Rhubarbe Sat 14-Nov-20 17:22:45

There are lots of other bits of blood cells which are like the Rhesus system that our bodies can develop antibodies to if we do not carry them but are exposed (things like c, e, Kell, etc).
Usually these antibodies are less of a problem for babies than rhesus antibodies would be. They will monitor your bloods every 2-4 weeks, I would have thought, to see if the amount of antibody is rising.
When your baby is born they will take cord blood to see the strength of any reaction and also baby will probably need monitoring for jaundice for at least 24 hours

WoolyMammoth55 Sat 14-Nov-20 17:27:29

Thank you @Rhubarbe, that's really interesting and helpful <3

Great news that these tend to be less serious for bub - I've been crying with worry (oh these hormones!!!)

That's great to know that I should be asking for another blood test to monitor - it's been 2 weeks since the first bloods were taken so perhaps I'll call my GP on Monday too to see if they can arrange another antibody test.

Again, thank you for replying Xx

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Milkshake54 Sat 14-Nov-20 17:52:38

Is this your first baby? Have you had a loss before?

Antibodies can pass when blood is mixed, so if you’ve been pregnant before and had bleeding or given birth, this could cause blood of the baby to mix with your blood an be present.

Although I’m not overly knowledgable around this, just what I’ve picked up being rhesus negative too and was interested because I have had a loss before.

WoolyMammoth55 Sat 14-Nov-20 18:31:51

Hi @Milkshake54 - this is my third pregnancy, second baby (fingers crossed...) First pregnancy ended at 7 weeks.

With both previous pregnancies I had anti-D, and actually my DS turned out also to be Rh neg on testing cord blood on delivery. So from what I can tell my risk of having Rhesus antibodies is pretty low.

I'm guessing it's likely to be Kell antibodies or one of the others @Rhubarbe has mentioned - that seems more likely.

I think what I need to ask for is more blood testing to monitor the antibody levels for any increase that could be dangerous for bub. SO grateful for the replies <3

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TenThousandSpoons0 Sun 15-Nov-20 02:17:39

Just wanted to say - what @Rhubarbe said, there are lots of other antibodies, when we talk about rhesus disease that refers to rhesus D antigen, there are loads of others in that group and also other groups of blood antigens. They’re just less common than RhD (which is confusing Enough as it is!). They vary hugely in whether they can cause trouble - kell is one of them, you can also have C, c, e, Fya, etc etc. generally antibody levels are checked every month or so, and if your antibody levels were super high then they likely would have scheduled you into an earlier clinic (though of course it’s worth checking with midwife). If levels are above a certain cutoff, often you’ll get scans to monitor the baby, usually every 2 weeks, and treatment is available if it’s affecting the baby at all. So - scary but totally manageable and the consultant will talk you through what needs to be done. You may also be able to get a blood test to check baby’s blood type in more detail - depends on exactly what antibody you have. All the best

WoolyMammoth55 Sun 15-Nov-20 13:55:04

Thanks @TenThousandSpoons0, that is super helpful! I feel more able to ask for further info and tests going forward now, as opposed to just completely lost and confused!

I think I will ask for a bit more info and pro-active tests/management, just want to be the best advocate for bub that I can be and make sure I'm doing everything I can from my side to try to ensure a good outcome.

Many thanks Xx

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Honeydukesmum Sun 15-Nov-20 18:41:06

Also discuss regular cross matching as blood with antibodies may need to be sourced for you / baby in case of needing transfusion at any point xx

GentlyGentlyOhDear Sun 15-Nov-20 18:45:05

I had anti c (cant remember if big C or little c now!) in my second pregnancy and had fortnightly blood tests. Nothing came of it. I have since had a third child and nothing at all cropped up in my bloods which surprised me as I thought they would stay in the blood in future pregnancies!

Dannii1996 Sun 15-Nov-20 20:14:09

How did you find out baby’s blood your currently carrying may I ask? I’m rhesus d negative and have had to go for anti D at 28 weeks each time- always been told there’s no way of knowing baby’s blood group until there born xx

GentlyGentlyOhDear Sun 15-Nov-20 20:18:53

My hospital trust takes a blood sample at 16 weeks and can detect fetal rhesus status and then you get anti-D only if baby is positive. This is relatively new as my first 2 pregnancies I had anti-D as they didnt check for baby's blood.

WoolyMammoth55 Sun 15-Nov-20 20:45:22

Hi @Dannii1996, yes it's like @GentlyGentlyOhDear says - in 2017 with my first they gave me anti-D and tested cord blood for his Rhesus type, but this time around it has been a blood test from me using the same type of tech as the Harmony test - more info here:

@GentlyGentlyOhDear and @Honeydukesmum, thank you both for replying! Gently it's great that your c/C antibodies weren't a big deal, very reassuring smile Also useful that you had fortnightly monitoring, I think that's what I'll ask for as only 8 weeks or so to go now (fingers crossed!)
Also great to know to ask about the transfusion prep Honey, that's really helpful.

Thanks again all X

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rosiegal Sun 15-Nov-20 21:57:36

During pregnancy with my son in 2014 I was found to have anti m antibodies, this was discovered when I had my first scam and they did bloods. I had to have bloods taken every month to check the levels but they were never of any concern thankfully. My son was delivered naturally and I believe bloods were taken again then but again there were no issues. I’m currently 11wks+5 with my second so I haven’t had my bloods done yet but I’ve been wondering if I still have the antibodies

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