do i have grounds for complaint or am i at least justified in being pissed off?

[enormouse]

This may be a bit wordy but bear with me, please.

During my first pregnancy I became severely anaemic and narrowly avoided an iron transfusion. I have been anaemic since my early teens and many many investigations have been done into it. However because of my ethnic background (indian) the drs insisted I be tested for thalassemia. This as unnecessary as a) my family were tested after my DSil became pregnant 3 years ago to rule it out and b) as a teen I lived in Birmingham in an area with a high ethnic population where testing for it is pretty routine and was done as soon as I became anaemic. Incidentally, I was tested for thalassemia beta during the pg and it came back negative.

I'm now 29weeks into my second pregnancy and the Drs/midwives are refusing to prescribe the iron tablets I need because they think I might have thalassemia. (Completely disregarding the fact I have a healthy 2 year old, that I was tested and it came back negative for one variant and my partner is white/Irish). They cannot prescribe iron as it might cause iron overloading if I have thalassemia.
I consented to testing at 12 weeks as the palaver during my first pregnancy was simply not worth it.
The results were lost and repeated. But my iron was ok if at the low end of the range.
The consultant I saw insisted my partner be tested, which he was, unsurprisingly it came back negative.
I had another test done 3 months ago for alpha thalassemia, results still not given despite me calling in frequently to get them.

Meanwhile, the anaemia I know myself to actually have has remained untreated for months. I feel like shit and I am actually hating being pregnant. I can barely get out of bed most days, I have missed time off college and have had to push my deadlines back and stop taking driving lessons. I feel like the worst mum to my toddler.

I am so angry that for the sake of a condition I probably don't have, I am not being treated for the condition I have always had. I feel like I'm not being listened to at all and am purely getting this testing done to tick a box.
I don't know if I have grounds to complain but it feels good to write it down and rant a little. Thanks for getting to the end of this.

[terilou87]

I would complain, you obviously need treatment and are being refused, totally unacceptable also it will already say in your medical records that you tested negative for thalassemia.
Correct me if I'm wrong isn't thalassemia something you are born with and not something you develop? I would also be changing doctors if I were you.

[Bakingtins]

YANBU and I would complain. I am booking in next week and no doubt will have the argument with the MW again because she will want to test me for this. I am white british so v unlikely but more to the point I have already been tested twice in prev pregnancies. They do not seem to apply any common sense at all. If you have been tested once and were fine then you do not need to be tested again.

[Leopoldina]

in most cases they won't care who your partner is as it's entirely possible that the child is not your partner's - that's how it works with anti d / rhesus blood status anyway - they won't make any assumptions as to who the father is.

[enormouse]

Thanks for your replies.

Thalassemia is an inherited condition, so I wouldn't have suddenly acquired it between this pg and my first.

leopoldina they need to rule out DP being a carrier as if we're both carriers, the baby might have the trait. But with thalassemia being mostly confined to the indian/middle eastern/Mediterranean countries it's highly unlikely that white DP would be a carrier (he isn't). As it is, the baby is unlikely to inherit the trait as it takes 2 carrier parents.

Our gp described DP even being tested as a waste of nhs money. Dp had a lot of blood tests done in his teens as he was on roaccutane for a while so if he did have any blood disorders they would have been flagged up years ago.

I have an antenatal appointment this afternoon so if it's not resolved after this I will be making a written complaint.

[EeyoreIsh]

I can see why this is frustrating! Can you not get some iron tablets over the counter whilst you wait for the midwives to sort themselves out?

[enormouse]

In most cases they won't test the father unless the mother is a carrier. When I was tested in first pg I wasn't even a carrier for it. This just seems like a triumph of bureaucracy over common sense. I'd find it funny if it wasn't turning me into a zombie.

[Leopoldina]

yes - and my point is that the hospital are not allowed to assume that your white european DP is the father of the child. THey have to act on the basis that the father of this child might be an indian / middle eastern etc chap, regardless of what you tell them (which is why I'm surprised they did even bother to test him)

[enormouse]

I did eeyore but I need the prescribed ferrous fumarate or sulphate as over the counter ones don't really touch the sides IYKWIM. I've tried most of them at some point (spatone, floradix, iron supplements).

[enormouse]

Sorry leopold I assumed that you meant to find out whether we were both carriers. I didn't realise that the hospital would assume I was lying about the father of my children.
That's a pretty sad state of affairs.

[Leopoldina]

yep. Unless of course I look like a bit of a goer, that's how they explained policy to me on the anti-D injections.

[EeyoreIsh]

You can get ferrous sulphate over the counter. You need to ask the chemist bit it's possible. I've got 200mg after a mc from the chemist.

[Geneticsbunny]

You can buy the ferrous sulphate behind the counter tablets if that is any help? Just ask the pharamacist. I have got them from boots before.

One reason genetic tests are repeated is in case of a sample mix up on the first test. Very rare but it can happen and sounds like it might have severe consequences if they gave you iron and you did have thalisemia. They were probably trying to cover their backs. Doesn't excuse their rudeness and inability to explain what they were doing to you though.

[Geneticsbunny]

The lab recognised figure for non paternity is 10%!

[enormouse]

Ok, thanks I'll do that. I assumed it had to be prescribed because that's how I've always got it. That's a relief. If they drag their heels today I'll just pop into boots and get some.

genetics I would have preferred to know that but I was variously told that it had been sent to the wrong lab (needed to go to Belfast)/ wasn't done at all/ had been contaminated/ consultant hadn't ticked the right box on the form.

Btw I had no idea that non paternity would be so high!

[Geneticsbunny]

enormouse you would be amazed at what crap doctors and nurses send in to labs and expect them to process. It probably was sent to the wrong place because the form didn't have enough information on.

If there has been problems with the sample at least one of the labs it has been through should have recorded it as an incident but it might be worth letting them know that it has affected you personally as this could mean that the incident is recorded as a major issue rather than just a 'lack of information on form' thing. The incident should have an IR1 form if it affects someone outside the recieving lab I.e. you.

Sorry brain is pretty crap at the mo but if you need any other info feel free to pm me.

[Geneticsbunny]

This might not all apply if you are in Ireland though. Not sure?

[Geneticsbunny]

P.s. I don't think it actually is that high. That is just the figure that is used.

[Noteveryday]

You can buy ferrous fumerate otc as well.

Assume you have been checked for all the other usual suspects for causing anaemia?
Just asking because I have chronic anaemia which is worse in pregnancy and never found a cause.

The retesting thing is annoying. I also have a blood clotting disorder. I have been tested and retested for this 7 times ( you only need 2 positives 6 weeks apart for a diagnosis).

Anaemia is bad for you and your baby,I do not understand why they would retest when you already have a clear negative.

[Elastigrrrl]

Enormouse, what an absolute pain. I think you've been treated abysmally. Much as I respect the medical profession (I really do), I've had my confidence shaken over the last year about some practitioners' cognitive skills when it comes to listening to and processing information they didn't come up with themselves!

In my experience, also based on my doctor's advice, it takes a good couple months for iron supplies to build up enough to change the way I actually feel. So I think you're right to go for the higher, easier-absorbable doses. And shame on them for not listening to you when you knew what the score was.

[alteredimages]

hi enormouse! I remember you from another thread and I'm sorry to hear you've been so unwell. I'm afraid I am not sure about complaints procedures etc but I would def think you have good reason to be upset when delays and mistakes in testing are preventing treatment of your anaemia.

Not really relevant, but a few years back I had the opposite: refused to check me for thalassaemia when pg even though father a carrier and chronically anaemic on the grounds I'm blonde. No questions about my ancestry, nothing. Clearly still assuming genotype=phenotype in both cases.

[enormouse]

Hi all
So yet again the blood test went missing so I had to have more bloods taken. Full blood count and another thalassemia screen.
Genetics bunny, it was supposed to go to Belfast city hospital lab as they're the only ones who have the right facilities to test for thalassemia but they had no record of it.
I'm not annoyed with the midwife, she was trying her best and its not really her fault. I've arranged to see my consultant next Wednesday and I'll raise it then. I might pm you before then genetics bunny, if that's ok?

I've been advised to rest as much as I can between now and seeing the consultant. Still nothing prescribed so I'll be buying some tablets as soon as I can.

Hi altered, are you from the January 2014 thread?

[HumptyDumptyBumpty]

Hi enormouse! Sorry to hear you're having a shitty time - we miss you on the Jan 2014 thread.
I would absolutely be kicking up a stink - this is beyond a joke. I'd stay in the consultant's office until you get some guarantees about the way forward (my old supervisor once told me it's much harder to ignore/fob off someone standing in front of you and politely refusing to leave/shut up, and he's right. Just sit there and insist).

I'm sorry this is spoiling your pregnancy, how unfair. Hugs.

[enormouse]

Aaw humpty I'll come back over. it just dropped off my threads I'm on list and moved on so quickly. Plus didn't want to infect everyone with my current doom and gloom attitude. Can you pm or post me the link to the current thread?

The problem is the consultant himself wasn't for doing it, he was pretty happy with what I had told him re my background and previous tests. But his registrar decided to go ahead with it just because of my ethnic background. But it's more than a joke now, so I'm not going to take any crap on Wednesday.

[alteredimages]

Yep, I'm from the jan thread. Come on over! Don't worry about being gloomy, pregnancy isn't really a barrel of laughs so we all have a good moan. I don't post much but knowing its not just me has cheered me up loads!

here is the link to the Jan thread.

[enormouse]

UPDATE -

Finally have gotten the results and am negative for both alpha zero and beta thalassemia.

Moreover, my iron has gone down from almost 20 pre pg to 3.2 (as of last week). I intend to write a letter to my healthcare trust about how badly this has been handled and at the expense of my wellbeing.