Hi.. Everyone : Hi.. I've been anemic... - Pernicious Anaemi...

Pernicious Anaemia Society

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Hi.. Everyone

madee profile image
13 Replies

Hi.. I've been anemic since ages.. I tried to take my tablets but they weren't suitable (gave me strong cramps and pain) and then I thought if I eat well I will recover so let's forget the tablets for a while...and I focused on my diet didn't work... Well past few months I was knackered exhausted all the time...

I did do the blood test in December 2016 and I called my surgery to ask if everything was okay they said yeah results were okay...

despite my health going downhills...

Today I was at surgery and told them that every two months I am losing my voice I am exhausted... And you guys said that everything was okay so I don't get it what is wrong...(I thought my thyroid problem doing this) The doc say "oh everything was normal just your iron level are dangerously low like" 6" I was shocked couldn't even speak too tired for arguments too.. 4 months to tell me this... Well Came home with an iron syrup..I would like to know what to do? Is it normal that they just gave a syrup..? Is their nothing that we need to do? (p's: my sis is anemic too and she live in France and after this results they hospitalised her) so I am lost in UK I don't understand what they are doing and what is the procedure :(

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madee
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13 Replies
ellj profile image
ellj

Have you been given a date to get another blood test to check that the syrup is doing it,s job ?

Did you ask for printout of your test results from last time to see what else was tested and what your results were ? If not I would do that Tues, when surgery opens again...You can just ask reception or practice manager and are entitled to have this information.

Any idea why you are Anaemic ?

There are others much more knowledgeable than me who will rep!Y soon I,m sure .

Take care

Ell

madee profile image
madee in reply toellj

Thank you so much for your reply ellj.. I had iron deficiency since I was 15y and they never told me the cause.. The tablets I used to take in France were okay.. Since I moved in UK the iron tablet they gave I couldn't handle them...

I was thinking the same thing I will book for another blood test after I've finished that syrup... It just so scary that some stuff we read on Internet if your iron is as low as "6" you can have a heart attack...and other stuff I don't know if it's true

And yes I got my blood test printed..

JGBH profile image
JGBH

Hi Madee,

Sorry you're feeling so ill. Your sister is lucky to live in France as in France health is important and patients' health is not neglected neither are patients fobbed off: it's called care and respect. The whole NHS scene is becoming rather scary. What next?

madee profile image
madee in reply toJGBH

Hi jgbh,

Yes..the way we are being treated in surgerys it's getting so inhuman.. I had a great relationship with my family doc In France and he was concerned about us... My mother in law told me nhs was okay too before just gone downhill past few years.... seriously I rather pay some sum..charge us but improve your services!!

They should change something.. we shouldn't be compromising on peoples healths.

Peoples around us tell us some horrible stories..day by day it's getting worse.. Plus it's like they don't want to hear what we have to say.. Like they just "shushhed" us.. "Like die you are getting free care why are you complaining? "

How to be optimistic about it..

Gambit62 profile image
Gambit62Administrator

Hi madee - hope the responses from ellj and JGBH have helped a bit.

Just wanted to let you know that the anaemia in the title of this forum is a bit of a misnomer - strictly speaking PA is one cause of problems absorbing B12 leading to a deficiency - one common symptom of which is a particular type of anaemia - macrocytosis - which is different from iron based anaemia.

If your iron deficiency isn't caused by lack in your diet or a bleed then it must be an absorption problem - have you been tested for any absorption problems - which could include PA, coeliacs and crohn's?

May also be worth asking about folate, B12 and vit D if not already done.

madee profile image
madee in reply toGambit62

Hi Gambit

I never had the absorption test...and yes I do have vitamin d deficiency plus I take thyroxine for my hypothyroidism..

Thank you so much for this information really appreciate it..atleast I can ask some questions next time when I see my gp....:)

(ps:I am sorry for my poor English being a French born)

JGBH profile image
JGBH

Hi Madee,

Indeed it feels like a conspiracy.... They must think we're stupid! What an utter lack of respect. Yet they find the money to pay hefty salaries to the GPs who in turn ignore the patients's symptoms and tell us "All is normal"... or "there's nothing wrong that antidepressants would not cure!"... Wait till Brexit is over... It is a bit like a scenario from George Orwell's book Nineteen eighty-four.... so very very worrying.

If only we were getting CARE... it's free nothing and we have contributed to that fund. They are playing with people's life. However if they or their family became ill no cash would be spared. Trust me...

madee profile image
madee in reply toJGBH

Too right.. I have no idea what to do so when I get too frustrated.. I just keep emailing them with my concerns.. And it's like talking to a brick wall :/

JGBH profile image
JGBH

Madee,

When did you move to the UK? If you're French then maybe you could go and visit your sister and go and see a decent doctor while you're over there and bring sufficient medicine back with you or your sister could possibly post it to you if and when you need more. Just an idea.

A friend of mine went to France at the beginning of the month for a series of investigations as she has been so very ill and unable to walk/drive since last October and yet she did not get anywhere here, even when she saw a private consultant! All keen to take our money but still unable to deliver the goods.

Perhaps you will get answers from some members of the forum about the best form of iron to take to ensure better absorption. Never heard of iron supplement in syrup form... what is it called?

Surely, if you are so anaemic then GP should refer you to an haematologist and also a gastroenterologist for a gastroscopy/endoscopy to check whether you have gastritis and absorption problems, and B2 deficiency and or PA (pernicious anaemia which as Gambit pointed out is not an anaemia but an autoimmune disease). It is important to discover the cause of anaemia before treating it. Do you have recent blood tests results? Number of red blood cells and their size. If larger than normal then might be macrocytosis (pointing to PA). If size smaller than normal might be microcytosis.... a sign of an iron deficiency but apparently not anaemia.... a bit confusing I must say.

There are many people on this site who know a great deal and who will be able to bring you support and advice.

With best wishes.

madee profile image
madee in reply toJGBH

Jgbh,

Thank you so much.. It's so kind of you to take your time to explain me this.. Now I will understand my blood report better..

And yes got my blood test report printed today just sending it to my family doctor in France.. The syrup name is "sytron"..

So sorry to hear about your friend.. Hope she gets the best treatment in France..it's saddened me to see ppls already going through an illness & have to have the the added stress of finding the right peoples to treat them..:(

(ps: apologies for my poor English being a French..)

JGBH profile image
JGBH in reply tomadee

madee,

You're welcome, no problem. However there are many members of the forum who know a great deal more than me.

If you could put your blood tests results on this site I feel sure some other members would be able to tell you much more in order to help. But it's a good idea to send them to your family doctor in France. At least you will get an appropriate treatment.

Are you a member of the pernicious anaemia association (PAS)? Are you able to send and receive private emails? If you want to do that all you need to do is click on my name and then you can send me a message. On pourra parler en Francais. D'accord?

Your English is fine, do not worry about that.

I have just checked the iron supplement sytron. You can google it as I am sure you know. It will help you understand what it is.

Take good care.

ellj profile image
ellj

Hello again, since you already have Hypothyroidism then you are more likely to have other auto immune issues.... Possibly Pernicious Anaemia.

So you need more testing as others have said, b12 folate, ferritin etc.

Again others can advise better than me.

May I say your English is fine, no reason to apologize for it whatsoever.

Wishing you a speedy return to better health but you may well need to revisit your doctor back home in France.

I actually went to the USA and Germany many years ago to solve health issues which our NHS were not interested in and gave me antidepressants over and over.

Ell

I had a hb count of 6 and was sent straight to hospital for a blood transfusion as they said it was dangerously low. I was then sent for an endoscopy and colonoscopy to try and find out why I was so low. I had to have another blood transfusion before starting on ferrous sulfate tablets which I took for 6 mths as even though my hb count went up to normal quite quickly, they wanted my ferritin levels ( where iron is stored) to be up to 100. They never really worked out why, though I gather that this happens quite often. If you feel like I felt, i feel for you. I have never felt so bad, unable to climb stairs without lying down to recover. If you are in England ask to have access to your records online, which you are entitled to, and make sure you are tested regularly and check it on your records, but really it sounds dreadful that you have not been treated more urgently.

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