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Does anyone suffer from anaemia? Why am I finding it impossible to get any effective treatment?...

(15 Posts)
PiperBeeley Sat 01-Oct-16 23:14:34

I've had it for over 10 years... all I ever get are iron pills - they are proven to either do nothing, or raise my iron levels slightly, only for them to instantly crash as soon as I come off them. I went on ferrous sulphate for 2 years, they did nothing but make me feel sick! I'm so tired - on every level... surely there must be something more that can be done? GP said they can put a camera down and see if I have bleeding stomach ulcers... they won't treat me while I'm waiting though... I have people tell me how awful I look and I frequently get fainting spells. Can anyone tell me if I should/can pursue this in a different way? Any advice is much appreciated X

Palomb Sat 01-Oct-16 23:18:48

Watching with interest, my HB is 9 and my ferritin was less than 9 last time I was checked. I can't tolerate ferrous sulphate so they just see, to be happy let let me plod along firing on half my cylinders for ever.

I all ready take 2 spatone a day. There's fuck all else they can do.

APlaceOnTheCouch Sat 01-Oct-16 23:24:38

I was anaemic for over 10 years and received the exact same advice. Iron tablets or invasive treatment (which was how the doctor described the camera option).
They did switch me to ferrous gluconate rather than ferrous sulphate which helped a little.
I also had the blood tests for helicobacter pylori which came back positive so I was given the medication for that.
However it was only after having DS that my iron levels stabilised. No idea why.

APlaceOnTheCouch Sat 01-Oct-16 23:28:40

I forgot - I also had a vaginal scan to rule out fibroids as a cause of the anaemia.

Helpisathand13 Sat 01-Oct-16 23:31:42

I have b12 injections every 3months and booster Vitamin D. Iron tablets never worked because I don't absorb them.

PinkSwimGoggles Sat 01-Oct-16 23:35:27

anaemia is a symptom.
so you need to find and treat the cause of anaemia and treat that.
shit diet?
bleeding (heavy periods?)
malabsorption (gastro problems?)

raspberrysuicide Sat 01-Oct-16 23:41:32

My levels were 5 and I had an iron infusion. I felt great for a few weeks after but then had to take iron tablets again recently.
They think it's to do with my heavy periods but when I had a scan there were no signs of fibroids or cysts so they don't know what's caused it. I've been anaemic for years too.

PiperBeeley Sun 02-Oct-16 00:08:31

How did you manage to get on that treatment Helpisathand13???
No, I don't have heavy periods at all. I have plenty of exercise, fresh air and a healthy diet.
I've been on ferrous sulphate, ferrous furmurate, ferrous gluconate, and various brewers yeast, metatone vitamins etc... nothing.
My last hb check came back 'dangerously low' gp said I obviously have an absorption issue, so it's time for the camera... really don't want to have it done but I'm desperate - I look like a zombie.. I feel like a zombie! I find it infuriating that after 10 years I'm still struggling with this - they're doing head transplants now fgs!... but they can't/won't treat aneamia sad

pilotswife Sun 02-Oct-16 00:16:58

You def need a scope as your GP suggests - this is a simple day procedure @ you will have a very light anaesthetic and remember nothing.
No point not investigating cause of anaemia
An iron infusion is effective in giving you a quick boost - this is done intravenously and takes about 3 hrs in day stay. Side effects are minimal and can make such a difference when iron tablets aren't enough.
Do make sure you are taking your iron supplements correctly - they absorb best in conjunction with Vit C and a few hours before or after you've had dairy. Tea also lessens their potency.

notapizzaeater Sun 02-Oct-16 00:23:29

Have they suggested coeliac ? I'm anemic all the time too and DS is coeliac so the dictors presume I am too. Not had the tests as all main meals here are gluten free.

Helpisathand13 Sun 02-Oct-16 06:28:26

Hi, I was on iron tablets for a long time but my anaemia did not improve. I was then told I had pernicious anaemia. (I am diagnosed with a rare and complex auto immune disease) in some people iron/B vitamins are not absorbed through food or tablet/liquid form and you need an injection. GP surgeries regularly do these for the elderly. Ask you GP is there an alternative to iron tablets or I've heard of B12 injections for iron deficiency? I had a series of 5 injections in 2wk period, it boosts your system then I have an injection every 3months just via the nurse at the GP surgery. I have been having these for about 7years. I know a few people who have them, not through meeting in a medical capacity, just friends, friends of friends. Vitamin D is a liquid that I have only when blood tests show it is low. I hope you get some treatment that works for you flowersx

Helpisathand13 Sun 02-Oct-16 06:38:19

patient.info/health/vitamin-b12-deficiency-and-pernicious-anaemia
This link explains a bit more. Just re read your post and I think sometimes I'd defo opt for the full head transplant! 😉

Kennington Sun 02-Oct-16 07:11:25

I hate the iron tabs too but take a reduced dose and with lots of orange juice and lemon water to help it absorb more efficiently.
I also changed my diet to increase red meat and citrus fruit.
This works. If it is iron deficient anaemia you just have to take the iron somehow. Have you tried taking the iron tabs just before bed?
Don't take them with milk and reduce dairy. Tea and coffee leach iron a little too so need to reduce that.

rubybleu Sun 02-Oct-16 07:55:36

My little sister has persistent iron deficiency anaemia that they've never found a reason for. I was also hospitalised for it in my late teens as my HB was so low it warranted a blood transfusion - lots of tests but no reason. Neither of us has bad periods.

You should at the very least have an endoscopy to rule out coeliac disease and malabsorption. Have you been offered iron injections? My sister is overseas but that's usual treatment for very low iron.

lennonj Mon 03-Oct-16 21:01:29

You should always have investigations to see the anaemia is happening. I am anaemia too as I have mild crohns so don't absorb it well. I don't get on with iron tablets either. I've tried a couple of different ones and feel ok for a couple of days but I feel really sick. I don't take them with dairy and have tried with food but still I feel bad. I asked my GP about iron infusions, she was happy to refer said would ask my consultant who said no, my levels are low but not low enough! I'm happy about this as doesn't take into account the fact that I feel tired all of the time, an d often dizzy, and anaemia is hardly going to improve.
Anaemia does seem like something you're expected to put up with but it just feels like I don't feel as well I could!
I hope you get nearer getting an answer when you you're appointment, the tests aren't pleasant but necessary to find out what's going on. Unfortunately it doesn't mean they'll sort out your anaemia even when you know what it is!!

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