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

(35 Posts)
enormouse Thu 07-Nov-13 11:31:47

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

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.

enormouse Thu 14-Nov-13 16:48:33

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.

enormouse Thu 14-Nov-13 16:50:01

Thanks to everyone for the advice and being so helpful at such a stressful time. smile

ProfPlumSpeaking Thu 14-Nov-13 16:54:53

3.2!!!!! Can you even stand up? Isn't that unsustainably remarkably low? Would you even be conscious? If you meant 13.2 then that is fine in pg I think.

ProfPlumSpeaking Thu 14-Nov-13 16:55:47

BTW If your healthcare trust is a foundation trust, then try writing to one of the lay governors. It does sound like they have messed you about horribly. I hope you feel better soon.

Bakingtins Thu 14-Nov-13 17:10:03

3.2?? I think below 7 is the cut off for a transfusion!

As expected I'm being tested for thalassemia again, despite being negative in two previous pregnancies and being totally the wrong ethnic group blah, blah. But will they test if I'm still immune to whooping cough (which I had as a child) so I can decide whether to be vaccinated? They will not. No common sense applied whatsoever.

OP I hope you start to feel better very soon.

enormouse Thu 14-Nov-13 17:17:22

Doublechecked and yes it is 3.2. I am surprised I'm still standing to be honest. I've had to take a break from studying and my DP has taken on most (if not all) of the housework, cooking and care of our DS. I feel like a zombie.

It went down to 6 or 7 in my last pg but came back up again in time for my due date. I had no idea it had gone down this much but at least now it can be managed. My gp has written a prescription for me and DP will pick it up this evening.

Thank you, I feel better knowing that it's resolved.

Bakingtins Thu 14-Nov-13 17:55:23

That's awful. You will have compensated to some extent since the drop has been gradual, but I bet you feel pretty ropey. I felt terrible when my Hb was 6 after a PPH and in fact had 2 units of blood. I would talk to them about whether you in fact need a transfusion (if that's something you'd consider accepting) because it is going to take ages to get you back up to anything like normal. Also, are they looking into why you have got so low (apart from their incompetence and not dealing with it for ages) because that is way beyond being "a bit low on iron in pregnancy" ?
I felt like a million dollars after being given 2 units!

ProfPlumSpeaking Mon 18-Nov-13 09:09:02

OP You need this looking into further. But first you need some strength. i am amazed you are not in hospital having a transfusion with a Hb level of 3.2. I understand that is dangerously low. If you have chest pain, be sure to present to A and E .

Noteveryday Mon 18-Nov-13 23:11:02

I couldn't lift my arms and legs at a level of 4 and had to have transfusion. Are you sure that's not your ferritin level? It really sounds worrying.

ProfPlumSpeaking Tue 19-Nov-13 08:08:33

I agree noteveryday - I couldn't even sit up in bed at about 4.5. Literally.

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