Please Could I Ask For Someone's Help? I Am So Confused!!!

Hello to one and all. This is my first post - (yep! A newby!) - but it may also be my last as I don't even know if I should be on here. I shall set out the 'background' first, and then explain why I'm so confused. I would be extremely grateful if somebody would help me to understand what is wrong - or where I've not fully grasped the information that I had a look at.

I am physically disabled and have a long history of mental health issues; both of these have made my medicine cabinet groan and me rattle with all the various stuff I've been prescribed for this and that. I am virtually bed bound and suffer greatly with pain and some loss of control and feeling from my waist down.

During one of several recent visit from my GP - my physical health is going further downhill and unusually fast. This has caused all sorts of 'new' issues, one of which is extreme tiredness and also the aforementioned nerve problems etc

Being that I only have 5 hours of care out of every 24hrs. The rest of the time I am on my own. This means that my 'diet' is severely restricted to just processed junk. After going through a shower, having breakfast and doing essential food shopping and laundry - consisting of 99% bedding as I rarely wear pj's etc and haven't been able to leave my house in nearly three years, so no daywear is needed - which needs doing everyday due to loss of bladder control etc due to the spinal cord damage. I can't get to the loo without help and so even the largest of adult sized products cannot cope with the length of time I have to stay in them until my Carer arrives etc.

So there's no time for the cooking of hot meals which equates to zero intake of veggies, fruits and stuff. I obviously cannot keep a meal hot or chilled during the time I'm alone so all my diet consists of is pasties, cakes, biscuits, crisps and (ring-pull) cans of rice pudding etc.

Sorry for such a long post but I need you to know the whys and wherefores of the whole picture

Right, so I had blood tests done by the District Nurse who visits me. This came back saying I was "severely anaemic"; here's where I get totally confused:

Going on the info available online, I think I'm right in saying that there are at least two types/causes/reasons for becoming anaemic and they're treated with different 'remedies' (Is that correct?)

One is lack of iron and the other is lack of folic acid(?) - there was something about B12 that the GP said but I can't recall the details. The treatment for each is either a supplement of iron OR a supplement of folic acid and/or the B12(??)

That all makes perfect sense but why has my GP prescribed BOTH??? I don't know if it's even safe to do that as I got the impression that you do need to know what is causing the anaemia and address them differently(?)

Please can somebody explain this for me? It concerns me because I really don't need any more health problems than I'm already being drowned by!!! Can this twin treatment work or am I heading for more problems if I take both? I'm so sick of being disabled, mentally ill - all this doesn't help with that either - and putting up with all the peripheral issues/complications and side effects without this on top!!! I have no faith in the system that has constantly let me down and left me to rot on my own.

Please help me someone! Please!!

27 Replies

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  • I'm so sorry to hear about your health problems.

    When you say you've been prescribed 'both', exactly what has been prescribed? I'm going to guess it's iron sulfate and folic acid. These will fix your anaemia - if it's due to too little iron or folic acid in your diet (and it sounds like that may be the problem - as both are abundant in green leafy vegetables).

    A lack of B12 can also cause a type of anaemia. This is most commonly found in meat and fish (so pasties are good).

    The first thing to do is find out just what type of anaemia you've got and exactly what the docs have tested. Can you ask your GP to send you a full copy of the blood test results - then post them here?

    If you have been given iron sulfate then you'll get much more benefit if you can take them with a drink containing vit. C and/or citric acid. Orange juice is good - a can of zero-sugar fizzy orange should be good enough.

    If you can eat breakfast cereals - with long-life milk maybe - they are packed full of vitamins and minerals nowadays.

    But the important thing is to find out just what the doc is treating and what else they may have tested for.

  • Thank you so very much for responding so quickly. I thought it may be days before I got any replies.

    The information and advice have really helped. I will definitely ask my GP for the full blood test results; I hadn't even thought about doing that so I'm very grateful that you said about it.

    I've never had this before and I am always very reluctant to search for the info etc on the Internet as I've heard that you can really scare yourself thinking that you've got a serious illness, when all you've got is something silly. I've got enough health problems and the last thing I want is to "discover I have both the plague and leprosy when it's really just and I growing toenail!?!? Lol.

    The thing that started me getting worried was when I read the signs and symptoms of relating to this Pernicious Anaemia. So many of them fit! The fog, the inability to recall the names of things, the nerve symptoms etc and others. I had previously thought they were to do with the existing health issues that I've already got. I didn't want to muddy the waters by putting 2 and 2 together and coming up with five!! Hence my plea for help from you good people on here.

    They could still all be related to the existing issues, or even side effects to the meds I have to take every day.... 16 different drugs [some are things I have to take to help with the side effects of taking the meds for the actual conditions etc]

    1) Degenerative Disc Disease (stemming from an accident at work.)

    2) Mood disorder/Psychosis

    3) Depression

    4) Emphysema/COPD)

    5) Polycystic Overy Syndrome

    6) Overactive bladder/Incontinence

    7) Gastroesophageal reflux disease

    Prior to the back/spinal injuries that I sustained during an accident at work when I was 28yrs old, I was perfectly healthy, fit and strong; and hadn't any health problems at all. Then between waking up and going back to bed, my whole life blew apart.

    Hence I'm reluctant to allow any new conditions, disorders, illnesses and such to come aboard and don't want to start taking any more pills especially if they're the "wrong" ones!!!

    That's why I've reached out in the hope to find someone who can help me.

    You've really helped me get my head around this, so you truly have my utmost gratitude and respect. Thank you so very much.

  • With regard to your Gastroesophageal Reflux Disease. Are you on any medication for this - specifically PPIs (Proton Pump Inhibitors - normally stuff ending in -azole)? I ask for two reasons.

    Firstly, these drugs reduce the secretion of acid in the the stomach. This has several effects - one of which is to greatly affect absorption of some things. Two of these things are iron and B12 (aha!).

    Secondly, the cause of Pernicious Anaemia is something called Autoimmune Metaplastic Gastric Atrophy. One effect of AMGA is to reduce secretion of stomach acid, resulting in little, or no, acid being produced. Paradoxically, the symptoms of low stomach acid are very similar to those of high acid - especially GERD. Obviously, taking PPIs in this situation can exacerbate the problem.

    Here's a nice article (with lots of references to real scientific papers - we like those) that explains it.

    It's probably worth discussing this with your GP.

  • We can only help you with the B12/folate/iron if we know what the results were. If it's difficult to go get them, which I understand, ask for some on the phone and write it down (if they will give them) Haemoglobin, MCV, folate, B12, ferritin would already help a lot. The more, the better.

    You say the GP prescribed both. Which ones you mean? Just folate and iron? No B12?

  • Thank you for replying. I will be phoning my GP as soon as the surgery opens later on this morning.

    I will let you know how I get on and, again, you've been very helpful

    Thank you very much b

  • others are helping with your queries about your worries - but can I ask why you are so alone? I don't know how old you are, but wouldn't social services put you in touch with some kind of visiting scheme? a local church? you could certainly do with some backup. sorry if these suggestions are our out of line,

  • Oh that is so kind of you to ask and you are by no means out of line. I'm touched by your concern.

    I am 49yrs old. I have no contact with any of my family at all. Have had such for many years now. I was put into Care at the age of 10yrs following the divorce of my parents. I'm the youngest of three children. Mother kept my brother. Father had custody of my sister. There were no relatives to have me so I was place in local authority care/children's homes until I was 18yrs.

    I'm not very good with the whole "friends" things and am totally lost when it comes to social interactions. Hence I live alone. But it's not something you need be feel concerned about. It really isn't too bad without the human contact stuff and I'm so used to being alone that I very rarely think about it. It's normal (Social services are that bothered. It was hard enough getting the five hours a day funding - I have to pay £155 a week towards it which is every single penny that I get from my work pension and disability benefits I barely make the rent some months but SS are cutting services every where because of the 'austerity measures" etc.

    Thank you for your enquiry though it is sweet of you. xxx

  • Hi dizzy rose and welcome to the forum

    So sorry to hear how you are feeling and all your symptons

    You are not alone and will now have help and advice from some lovely people - as you can see above.

    Have you requested more care or even just slightly longer so you are able to have a cooked neutrious meal?

    What area do you live? Are there any support groups who are able to visit you?

    Take care and post as recommended above your results etc

    X

  • Thank you for your message. It's terribly kind of you. I had to resort to getting the Care Quality Commision and the Local Government Commision to help me get the five hours. I think they were all a bit gob-smacked when I sent them 4 photos a day, every day, for several weeks, showing the multitude of sores and skin damage that was a constant problem; borne from laying in a urine-soaked bed for up to 20 hours of every day!! I threatened to send copies the whole lot of them - 314 pictures, taken over a span two years - to every newspaper, TV station and local officials etc. Suddenly they found the funding!! I must admit, it did make me wish I could've been a fly on the wall when they opened the emails every day to 4 gruesome photos of my bottom!!! Hehehe! I know I shouldn't laugh, and at the time it was far from funny, but time moves on. Thank you, again, for your kindness. xx

  • DizzyRose ...you certainly haven't lost your sense of humour which is amazing. You also have a gift of writing in an amusing way of telling your life story. Since you are on your own so long why don't you write your autobiography, I for one would be interested and who knows....might be a best seller ;)

  • Hi Dizzyrose, welcome to this forum where someone will always be here for you! :-) You can ask questions or just check in to let us know how you are doing.

    I agree with Peggy lally66 that you do have a way with words! I'm impressed with your writing gift. Yes, you could write a best seller!

    Take care and do post your test results as you will get even more good information!

    Take good care. xx

  • Oops, just realized I posted in the wrong place! Apologies.

  • Best to ask for your results and they could post them.. I know mine are online via the surgery too.. It's too vague to help anyone without them... Hopefully the suggestions of getting more help per day will see your conditions improve... If you feel stuck with your GP you can ask to be referred to a consultant that may give you more comprehensive answers, tests and find a path forward for you.. 😊

  • Thank you for your reply. Everyone has been so kind.

  • Try the church Later Day Saints will come visit they have visiting sisters who would help greatly Look up your nearest branch and call

    Who ever gets your shopping for you get fruit already to eat they come in dishes which you could have best and snack on Ask your helpers to put soup made with big chucks of vegetables in a nice wide soup flask for you

    Just a few tips which might be of help to you

    Hope you improve

  • There are actually a large number of different types of anaemia. Anaemia just means a problem with the blood. Usually it is used to refer to a problem with your red blood cells.

    There are a number of things that can go wrong with red blood cells because to work efficiently they need to be the right shape and size. Red blood cells use 'haemoglobin' - iron is important to making haemoglobin - to store oxygen which they will carry from your lungs to the cells that use the oxygen for releasing energy etc etc.

    So, if you don't have enough iron your body can't make enough haemoglobin for your red blood cells to do their job properly. This is an iron based anaemia.

    Blood cells are made in your bone marrow. As well as iron there needs to be enough folate and B12 available to make sure that the cells are formed properly. If there isn't enough folate and/or B12 the cells will be deformed. A normal blood cell is disk shaped with a dimple in it - this gives it the right ratio of surface area to volume for it to absorb oxygen quickly in your lungs and release it quickly when it gets to cells and transport all of the oxygen that is needed. If you are deficient in folate and/or B12 then red cells will be slightly larger and rounder than normal so they aren't as good as carrying oxygen to cells because they don't have the time to pick up all of the oxygen that they can carry when blood goes through your lungs. This is macrocytosis and is a folate/B12 based anaemia.

    Both types of anaemia can occur at the same time and there is not problem with treating both at the same time - in fact it wouldn't really make much sense not to treat both.

    You can also have microcytosis (small blood cells) - which is likely to be a consequence of an iron based anaemia.

    Both folate and B12 are also used in other biological processes that maintain healthy functioning of muscles and nerve cells so being low in folate and B12 can and will affect you in other ways - not just causing an anaemia.

    Unfortunately many GPS don't really understand B12 and folate deficiency and can be confused - thinking that it is all about anaemia and what is going on in your blood and forgetting about all the other processes that being deficient will stop working properly. Anaemia isn't always among the first symptoms that occur though it is a common one. I have never had any obvious signs of anaemia though I can trace back my symptoms of B12 deficiency over 40 decades.

    If you want to see a fuller list of the symptoms of B12 deficiency then you can find it one here

    pernicious-anaemia-society....

    Because folate and B12 are used together by most processes there is a huge overlap in the symptoms.

    There is also a huge overlap with the symptoms of other conditions - such as thyroid, ME, MS, and diabetes, which can make it very difficult to spot a deficiency and to misdiagnose a deficiency.

    Hope this helps clear some of the confusion.

  • Thank you for taking the time to respond with so much information. Everyone has been so generous with both their time and knowledge. It is greatly appreciated.

    Can I just ask; I'm puzzled by your comment:

    "Please refrain from making derogatory comments about other HealthUnlocked groups, members or Admin of those groups."

    I've gone back over everything I've submitted but I cannot find what or where I made the "derogatory comments". I've not set out to do such and I'm very concerned about having been so rude and horrible! Please, please send me the bit where I went wrong. Please!

    I would never be deliberately nasty to anybody and for the life of me I cannot see where I've gone wrong.

    I am so very sorry I never meant anything.

    I feel lousy and I'm so sorry!

    Please ask the person to forgive me I never did it on purpose. I'm so sorry!

    I will delete my registration immediately and will not bother you again I'm so sorry.

  • Hi, don't worry about that line. We've had some problems this week so admin adds that line for new members, it's not directed personally at you.

    I've read you posts, and it could very well be that some of your diagnoses could be related to pernicious anaemia and or folate/iron deficiency. So I am very curious about your blood resultst. Have they never tested you before for this? Do you have copies of earlier blood tests that have been done? Could be worth looking at them to see if they missed it before. But anyway, give the surgery a call when they open and we see what those values are and what should/could be done. Oh, and what did the GP prescribe exactly? Did you get that yet/take it yet ?

  • PHEW!!

    I thought I'd upset somebody. I'm not very good at all the rules and regulations re social interactions and have ruffled feathers by being too open/honest/blunt. I don't mean any harm, but people take offence if they ask you stuff and you answer truthfully!?! The "does my bum look big in this?" or "Do you like my new top/dress/shoes?" I'm not nasty in my replies but they still get miffed at me even when I'm trying to be as diplomatic as possible.

    Sorry......off on a tangent there for a minute. Sorry.

    ><><><><><><><

    I have been trying to contact the GP surgery for well over an hour now, but it's constantly engaged, so no info yet......

    At last! I've got the five things that you need to know etc. I will list them here:

    Haemoglobin = 118

    MVC = 87.7

    Folate = 3.2

    B12 = 436

    Ferritin = 9.2

    I have no idea what any of these mean, or if any are too high or too low. Please can somebody let me know please and explain it all in layman's terms please?

    I don't know why, and I'm not normally a scaredy-cat, but I've started bawling my eyes out and feel really scared! I know it's stupid but I can't seem to stop.

    If you can help me just this little bit more I will promise to then leave you all alone and stop pestering you so incessantly.

    Even if you can't do that, I would just like to thank all of you for the massive amounts of kindness and help and information you've unselfishly given.

    You guys are incredible and from the bottom of my heart,

    THANK YOU

    XXXXXXXXXXX

  • You have a folate deficiency, a iron deficiency and anaemia. It's called Iron Deficiency Anaemia. Without adequate supplies of iron, folate and B12 a person will not be able to build healthy red blood cells. Unhealthy red blood cells means the patient will have low haemoglobin. And a lack of haemoglobin is what is meant by Anaemia. You need healthy red blood cells to carry oxygen around your body, which makes you (very) tired and not able to think clearly and other symptoms. So, the most important thing now is to get enough iron and folate inside so this all gets better. I assume the doctor prescribed both.

    Your B12 seems ok, although a normal level does not rule out a deficiency 100%, it is not so likely.

    Start with the iron and folate asap. That's a start. I am sending you a private message as well, as I would like to help you a bit more.

  • Apologies - the copy and past obviously didn't work - this is what I meant to paste

    pernicious-anaemia-society....

    really must try to check through more thoroughly before hitting submit in future!

    As per PAS-admin - part of the reason for posting was that your non-anaemia symptoms in your post are very reminiscent of B12 deficiency

    It really wasn't a reference to you but obviously I hadn't cleared out a copy from some earlier correspondence.

    You are more than welcome here and I certainly am not aware that you have offended anyone. Please don't delete your account!

  • Hello DizzyRose. Just wanted to say welcome to the site and I'm so sorry that you're having so many health problems.

    I've been thinking about what you've been saying and a few things spring to mind...

    You say that you've been suffering from Mood disorder/Psychosis, Depression, Overactive bladder/Incontinence, and Gastroesophageal reflux disease (amongst other things) and it occurs to me that all of these things can be symptoms of B12 deficiency! I'd be very interested to know how long you have been deficient and it might be that getting on the right regime of B12 treatment would have a beneficial impact. Might not be the case, but it's certainly worth a thought.

    Also - if you have been treatment with PPI's for your gastric reflux disease, these can cause B12 to be depleted.

    I was also interested in your comments that you like to be alone and 'quiet'...this is also a classic symptoms of B12 deficiency. Though not everybody who likes to be alone has it 😀.

    Also - you may be elegible for meals on wheels. If you type in 'meals on wheels' it'll take you to the government website and you can put in your postcode to see if it's available in your area.

    Also (so many also's)...as others have said, please do not even consider leaving the site, now you've found it 😀. It's a wonderful space and people are so very caring, knowledgable and helpful. Since I've been here I've made lots of what I now call 'stranger friends' and hopefully being here will make you feel less alone in the world (in a way that you have control over and doesn't feel intrusive).

    As others have said, nothing you said was at all upsetting (apart from your situation 😀) and, like Gambit62 , I have also made cut and paste mistakes before! (Part of the 'fog', I think - you just don't see things).

    And before I go, please can I say that if you would ever like to be less alone, I would happily do some research to see if there's anything in your area that could help.

    I also love your spirit and determination...I laughed out loud at the thought of all those photos hitting email boxes on a daily basis....how I would have loved to be a fly on the wall for that!

    So, finally, please do post any results you manage to get hold of. There are lots of people here who can help and we'll look forward to hearing from you again.

    Take very good care xx

  • Hi Foggyme. I just wanted to acknowledge your message and thank you for all that it contained. I would respond in full to you, but I feeling so very, very sad right at this moment and cannot muster the mindset that I'd need to do justice to your lovely message. I cannot stop crying even though I've no idea as to why I'm blubbering in the first place!?!

    Please accept my apologies for being so wrapped up in myself that my manners have been pushed aside.

    I promise to reply properly when my face has stopped leaking. XXX

  • Oh dear DizzyRose...its really nice that you want to reply but please can I reassure you that people here have no expectations of others...so there's really no need to feel bad when you don't reply 😀, whatever the reason.

    I'm just so sorry that you feel so desperately sad.

    Is it possible that you're blubbering because you've suddenly found a set of people who understand what you're going through? I know when I joined this site I was overwhelmed with the responses I got...especially after struggling alone for so long.

    Or perhaps you're having a really really bad day and simply feel overwhelmed!

    Whatever reason...being wrapped up in yourself is something that you would have right to be, given everything you deal with on a daily basis. But I don't think you are...by the nature of the fact that you think you are (if you know what I mean).

    I sincerely hope that your face stops leaking soon and I send you a heap of hugs 😀😀😀 xx

  • People do tend to associate crying with being sad but there are other reasons why people cry.

    When you are emotionally connected to the world it can be overwhelming and that is when tears will come - it often isn't anything to do with being hurt or sad, just something that happens when you are emotionally connected. That's one reason why people cry at weddings. I sometimes experience it when I am watching a particularly emotional programme on tv that I am very involved in - or even reading a book. It used to embarrass the hell out of me until I realised that it was just part of being emotionally connected and not a sign that I was soft in the head :)

  • Hope You have found some comfort and help from this lovely and very Caring site! Super people on here who really are very kind and genuine ... !Someone will always answer you so "Take Heart" ... You Are Not Alone Rose .. XXX

  • Hi dizzy rose just wanted to say am sorry to hear of the problems you have had. I see you have plenty of info regarding the b12 etc. I just wanted to ask how your care is provided, is it a company with a number of employees or direct payments where you have one main carer. Have you discussed the issues with meals as it should be possible to help you have a better nutrition level even with five hours a day. A slow cooker for example can be really useful to create nutritional tasty meals with minimum effort and budget conscious. I would be happy to pass on recipes that are easy and quick for carers to follow.

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