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Pernicious Anaemia Society

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buggybootkins profile image
β€’18 Replies

Hello

I have just found this site and don't know if it will help me but I am getting kinda desperate

About 18 months ago I got some small itchy spots on my ankles like flea bites though I have no pets, it got progressivly itchy and I was scratching and making it bleed, the doctor gave me some steroid cream and I used that for about 6 months with no relief it just got worse, I stopped the cream and still it got worse then I went on holiday and got some mosqito bites on my legs, they got infected and now I have ulcers on that leg my problem is the amount of pain I am in... I normally have a very high pain threshold but this is some thing else, I am going well over the limits of codein, paracetamol and neproxen but to no avail, this pain is relentless, Keep telling my doctor there is something else going on, he is sending me for blood tests for B12 and I think it could be that it's my nerves as my diet is not good and hasn't been for years plus I am an alcoholic which is probably why I keep being ignored, any advice would be welcome as it all feels hopeless now, I can barely walk have lost my business.

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buggybootkins
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blondie2505 profile image
blondie2505

It could be a factor as alcohol abuse can give you a deficiency but that is as far a my knowledge goes the admin will be better at helping you.

Kellybee profile image
Kellybee

I think alcohol can reduce B12 levels Hun .. hope you get sorted fast it sounds like a horrible time you are having ... good luck

Foggyme profile image
FoggymeAdministrator

Hello Buggybootkins. The first thing I'd like to say is that I'm so sorry that you're having such a bad time at the moment and that things seem to have gone so wrong for you.

The second thing is that your post is going to be quite difficult to respond to fully since the expertise and knowledge of people on this site is largely to do with PA and / or Vitamin B12 deficiency - so perhaps the best place to start is with the B12 deficiency. Because of your problems with alcohol I'm going to have to touch on that as well (since it is bound to be part of your health issues) but please understand that this is not something that I know a great deal about...but I'll try...

Excessive consumption of alcohol can cause (amongst other things) vitamin B12 and folate deficiency so it is possible that you are deficient in both. So your GP should check your folate level as well as your vitamin B12 level. Folate and vitamin B12 work together so if your folate levels are low, your body will not be able to utilize vitamin B12 properly. Folate levels should be in the top third of the reference range - your GP may not know this - so if any lower than that, your GP should prescribe folate supplements for you. However, it's important that your GP does not give you folate before treating for low B12 (if you have it) since this can cause neurological damage and also mask a potential B12 deficiency.

As a rule of thumb, levels of B12 that are lower than 500 can give neurological symptoms and should be treated (but it's more complicated than that - can come back to it when you know your levels, if necessary).

Alcoholism can also cause other vitamin and mineral deficiencies which impact on the way your body functions, namely - vitamin A, calcium, magnesium, zinc, and iron. So it would be a good idea for your GP to do a full vitamin screen, plus a full iron panel (if you have low ferritin, this can cause iron deficiency anaemia - this often goes had in hand with B12 deficiency - and this can make you feel very ill indeed).

Your GP should also do a full blood count (FBC) since this will give a fuller picture of any anaemia that may be present - in particular, something called macrocytic anaemia (large red blood cells) which usually accompanies folate and B12 deficiencies and which can also be an indicator of pernicious anaemia. I mention this since, as you rightly recognise, GP's often fail to look for other things that should be investigated and ruled out - especially if excessive alchohol consumption is present. And I firmly believe that problems with alchohol shouldn't be a reason to exclude anybody from access to proper and appropriate medical care and attention.

Really not sure about the problems with the ulcers on you legs - but vitamin K deficiency can cause problems with excessive bleeding and alcoholic abuse can cause damage to blood vessels, reduce the body's ability to fight infection, and cause swelling of the ankles - all of which may be complicating factors. Also - have you been tested to see if you are a diabetic (reduced liver function can cause problems regulating blood sugar so again, this could be a complicating factor).

I assume that your GP is keeping a check on your liver function with regular LFT blood tests - especially if you suffer from yellowing of the skin or eyes?

It's only possible to respond to you in very general terms since the information you give is very general. A good place to for you to start investigating B12 deficiency is by reading the PAS pinned posts to the right of this page when you log on. In particular, read the symptom checklist as this might enable you to identify if some of the symptoms you have could be linked to B12 deficiency. Highlight any relevant to you and take the list along to discuss with your GP - as a starting point. It's also important to note that if you have any symptom that is listed as a neurological symptom, then you will need a more intensive regime of B12 injections. Most GP's have not heard of this and often undertreat at this stage so if you think this applies to you, then post again and we can advise further on this to help you get the right treatment.

It's also a good idea to read all the posts and highlight anything that is relevant to your particular case - again to discuss with your GP - and also so that you can begin to try and sort out which health issues may be linked to folate, B12 deficiency and potentially to pernicious anaemia. (It's worth noting that if anybody in your family has an autoimmune condition, then it's likely that you could have one too - and PA is an autoimmune condition.

Unfortunately, GP's are often very ill-informed about B12 deficiency so you might find that even if you are deficient, your GP will say that you do not need treatment. I can never understand this and it happens all too often to many people here. If this does happen to you we can offer more advice on how to deal with it. When your blood test results are back, get copies of everything (this is your right) and post the results here, together with the reference ranges so that people can help you with interpretation (GP's often say things are 'normal' when they are not, so this is quite important).

Alcohol is obviously going to be a complicating factor in your health problems so the best way to try and sort out what's actually happening in your body is perhaps to do some internet research of the way alcohol can effect the way the body functions - at least then you'd be able to understand some of your symptoms and decide what, if any, action you want to take (not our business here to tell you what you should do - just rather to point in directions that can offer more information and support πŸ˜€).

There are also alcohol support forums in the health unlocked communities if you search the health unlocked community - they will be much better informed than we are and may be a good place to look for additional support.

Also, if you log on to NHS Choices and search under alcoholism, there's a link that will enable you to find support services in your area if this is a route that you would like to follow.

And finally for now Buggybootkins...joining here on the first day of a new year is something really positive and hopefully. The folks here are very knowledgable and are always able to offer help and pearls of wisdom when needed so please do pop in and ask more questions whenever you need to. We won't always know the answers to your particular set of issues - but we might be able to at least point you in the right direction πŸ˜€.

And we can certainly help with anything B12 deficiency / PA and assorted (very various) related issues.

A happy new year to you Buggybootkins and I sincerely hope that this is the year that will start you firmly on the route to better health. Take very good care xx

P.s. Think I should have said - my mum was a life long alcoholic and looking back I now firmly believe that many of her health issues - which were written off as due to alchohol abuse - were in fact due to an undiagnosed and untreated B12 deficiency. So do please follow this up and keep asking for help here if your GP stonewalls you πŸ‘πŸ‘

buggybootkins profile image
buggybootkins

Thank you all I'm a bit emotional had to have a lil cry there I didn't really expect anyone to comment let alone such kind and very informative comments, now I feel I can go forward and ask for the right tests thank you for that Foggyme :) .... you all gave me some hope that I'm not completely alone and this year will be the year I give up alchohol as soon as I can get the pain under control, don't think my heart can do this pain and the DTs......bless you and have a happy new year to you all xxx

jade_s profile image
jade_sβ€’ in reply tobuggybootkins

I don't particularly have a problem with alcohol but at one point was starting to go down that path. After getting all my hormones (thyroid, cortisol) and vitamins sorted out, the cravings totally disappeared. I hope you can find similar success. I have a relative that's an alcoholic and it's a difficult disease to beat, so you have my sympathies.

As for the bites - is it possible that you have bedbugs? They're really easy to pick up at hotels and so on. My sister ended up with a really bad infestation at one point and she also had tiny flea-like bite marks that she couldn't figure out what they were from. In the end - after quite a few months - I think she determined it was bedbugs due to a gift, I think it was a wool rug or something.

Wishing you success and all the best in the new year!

buggybootkins profile image
buggybootkinsβ€’ in reply tojade_s

Thank you Jade... it's not bed bugs though as I sleep naked and the only places I got bites were below my knees and my arms up in the mountains in spain.... mosqitoes also like the alcohol in my blood it probably killed them which made me feel a little better... :)

have the best new year also xx

Hidihi profile image
Hidihiβ€’ in reply tobuggybootkins

Hi Buggybootkins . High dose Vitamin C & zinc 15 mgs i three times a day with the Vitamin C will help with the ulcers. You can safely take high dose Vit C to bowel tolerance i.e. until you feel it makes you go to the toilet. There is a particular type of dressing that hastens ulcer healing 3 fold, but right now, I can't get access to that info. When I do I'll post on here.

buggybootkins profile image
buggybootkins

pas pinned post.... I have every one to some degree except the swollen tongue....

Gambit62 profile image
Gambit62Administratorβ€’ in reply tobuggybootkins

suggest that you print out the list and share it with your GP.

I would also recommend that you talk with your GP/pharmacist about your use of painkillers - paracetamol as can impact on liver function as well as the alcohol and liver function can impact on B12 absorption as well as a lot of other things. Looks like naproxen could also impair liver function as well from looking through the side effects.

Hope that you manage to get things sorted soon.

Foggyme profile image
FoggymeAdministratorβ€’ in reply tobuggybootkins

Hi Buggybootkins. I'm really not surprised about that. Potential vitamin B12 and folat deficiency is a good place to start (with some of the things I've also suggested - but there may be more that I'm not aware of.

So..be prepared that you might have a fight on your hands with your GP...if you read some of the posts here you'll see that that's not unusual where treatment for vitamin B12 deficiency is concerned, so any reluctance may well be to lack of knowledge on your GP's part, and not just to your problems with alcohol. So don't give up at the first hurdle - something that would be very easy to do especially as I expect you're feeling very ill and alone.

It is possible to give up,alcohol without having to suffer from DT's if you have the right support and medications in place and perhaps this is something your GP can help with - for instance with a referral to an alchohol abuse support team. Please don't try and go 'cold-turkey' 'cause I understand that this can be quit dangerous - not to say very unpleasant (to put it mildly).

You'll see from the responses on your thread that you're certainly not alone now...people here are thinking of you and there will always be folks around to pop in and offer help and support.

So first...get those blood tests done, post the results here...and off we go...

The very best of everything to you Buggybootkins and pop in here whenever you feel like you need help...or just a few friendly words. Take care xx

wedgewood profile image
wedgewoodβ€’ in reply toFoggyme

Foggyme , you're marvellous !

Foggyme profile image
FoggymeAdministratorβ€’ in reply towedgewood

Good grief Wedgewood...what an extrodinary thought..thank you πŸ˜€.

I'm always left thinking that I wish there was more I could do...most times words don't seem quite enough!

And likewise, I'm constantly amazed at the marvellous contributions everybody here makes...it's truly heartwarming to see how much is willingly given to try and help people who often face overwhelming odds when trying to get a diagnosis and treatment.

So, I say, cheers and thanks to all...and a happy healthful new year.

wedgewood profile image
wedgewoodβ€’ in reply toFoggyme

Your reply was so helpful and sympathetic so I had to say something ! We at the PAS are so fortunate to have this forum ! I don't know where I would be without it

You help us in such a huge measure. I always read foggyme's comments . Your expertise and sympathy is great . Thank you !

Foggyme profile image
FoggymeAdministratorβ€’ in reply towedgewood

πŸ‘πŸ‘

Lisahelen profile image
Lisahelen

Hi, lots going on healthwise for you. Try to get the health professionals onboard, helping you beat the alcohol and your increasing need for painkillers. Ulcers need to be cleaned and dressed to help healing. Steroid creams can make the skin overthin so should be used sparingly.

The itchy spots which appear to have been the start of this could be a reaction to something which you would never consider- washing powders, creams, lotions or even a foodstuff. gluten can affect the skin by giving itchy areas. Ive recently been diagnosed coeliac and have learnt that many suffer skin conditions from gluten although I dont suffer myself, so it might pay you to get your gp to do a coeliac screen at the same time as any other bloods.

The more help you can get, be that support groups or medical professionals the better it will hopefully be for you.

Binky68 profile image
Binky68

Hi buggy, my husband got a rash in his ankles, then his wrists , desperately itchy , it was an auto immune condition called lichen planus, he had steroids but they didn't work very well. 2 years on and It is just starting to clear . You should get a diagnosis from s dermatologist , not just coverall treatment.

Re alcohol, I agree with you. My father was an alcoholic and died at 69, his nerves were definitely affected in the end.

You do need expert help though . Best wishes . Keep at it . Use alcohol as a minimum medicine rather than a drink. X

Binky68 profile image
Binky68

Meant to say... my father was also given a medication that made alcohol taste awful . His caters then 'medicated' him with vodka. I once bought him a bottle and he drunk the whole large bottle of vodka, neat, in the car with my children in the back within seconds of me giving it to him. Bizarrely , he hardly drank at all in his last year, he just 'went off it' . You need support to get alcohol out of your life, don't do it alone , get expert medical support, it will make it less hard.

Cb1963 profile image
Cb1963

hey there my long suffering friend,quite alot to take on,but please try and take on what information I can pass onto to you willingly,so I'll work my way backwards on your symptoms,the booze is and will be doing untold damage to you outside and inside,and firstly you need to solve the demons that are causing you to drink? This will be a start to become more focused on your life,and then the choices you make are not just random and more informed which then hopefully you'll understand how drink can affect us,I was a raging alcoholic who had demons that nearly ruined my whole life,I drank and drank to bury my head in the sand cause of ptsd,so then the health problems arise,skin problems,nerve damage,detox councillor's,numerous stays in hospital's,so I'm not proud of my drinking,but I'm 5 years sober,I've gone and said my apologies to folk I might of upset in the past,don't worry about that at the moment,all that will fall into place eventually,I'm not saying this will be easy but go to your GP book a double appointment get the right medication for when you set a day to stop drinking,that's a must as you could end up having a seizure,as to stop drinking suddenly can cause serious problems,sounds like you need some help,and people on this forum have either had something similar or know someone who has had other health issues that resonate with them,I'm taking you seriously and I truly hope you get some help,yes people might sneer at us,but NOBODY is perfect,so it's YOU who needs the help and if my advice hurts a little,please,please remember it's not me having a go at you,but trying to give you advice,and support,keep on the forum and hopefully you'll have some positive news over the next few weeks.

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