My friend and neighbour has crohns, I know little about this only of what she tells me. We have been talking frequently on phone even though she lives two doors away. She has not been well so I popped down last week with a treat, She has lost a lot of weight I hardly recognised her. Rang her christmas day morning she thought she was having heart attack. I said no. No. Got hold of son and daughter (both have cancer) they came over and dealt with her. This morning she phoned and said I need to call 111 can you help. Went to see her, her legs three times bigger since christmas day.She told me that it felt like someone putting needles in her feet (alarm bells rang with me) anyway got through to 111 asked many questions, she forgot about the pins and needles and breathlessness she had been suffering from. She got an appointment to night at 6.30 at local hospital so nurses can see if further action needed.
I told her to write down everything and take it with her.
I just hope and pray more investigations are done!
She puts on a brave face so as not to worry her children.
Thanks nackapan, it was only through this website I knew about this. My friend and partner went to school to gether over 65 years ago, and both are suffering at the moment they are like two peas in a pod. 😜She is aware of b12 deficiency, both her daughter and granddaughter have it. I'm not so sure she knows all the symptoms. One will telephone each other several times a week to see how the other is doing!
I don't like to interfer, but she knows she can phone me any time if she needs help. She is not on any b12 medication which is a concern, at least my partner has at least been given injection.
Your thoughts are probably are the same as mine, but will have to wait and see. Just praying now the hospital will do more to help her.
Thanks for replying I know you are below par yourself and only too willing to help.
One other thing I picked upon was the fact she could only eat banana this morning and her breathlessness subsided. (Could be folic ?)
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Unfortunately she doesn't have internet access. I am sure she is aware of b12 deficiency, the only problem I can see is if her results come back quite low but within the guidelines, but even in that case they SHOULD be willing to treat her. One thing the doctors should do is read the latest edition on the website where it saysA particular drawback of testing B12 levels is that currently widely used tests only measures total of b12 and not active.
There is also reference to levels of 400 can still be borderline.
How many doctors read this and act.
I spoke to her this morning, she is sleeping alot and keeping her leg elevated, but when I speak to her again I will mention to her about getting the actual figures.
My friend phoned yesterday, on fourth lot of antibiotics Even stronger ! Contrary to what A and E said do not use Ice packs. She is sleeping on a mattress on the floor, cant get upstairs. At least the Doctor did take blood tests earlier than her original appointment. She was more concerned about the breathlessness .
Just my opinion going through link you posted on Sally's Book, I think she has Thrombocytopenia. Surely 4 lots of antibiotics would have cleared an infection.
I am no doctor, only to say the information gained on this website and Knowing that Doctors have little knowledge of b12 deficiency.
Perhaps today or tomorrow we will know the results !
What does concern me is if she is b12 deficient, will she get the appropriate treatment, after all we live in gloucestershire, and their treatment is a DISGRACE!
Well my friend has just phoned, her blood tests results are in ! I wont reveal all deficiency as too numerous to mention. But yes she has numerous Anaemias and thrombocytopenia.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
I am really concerned, as she has had 4 x antibiotics which have made her legs worse.She did say this morning that she was not going to take anymore as they were making her legs swell even more. (On reading more info on thrombocytopenia antibiotics can further increase the RISKS!)
I just hope and
🙏 that they now treat her deficiencies in the correct order. (Potassium and salt also very low).
She was told originally not to add salt to her food!
This is what you get when treatment is done by telephone calls and not seeing patients!
Before christmas she wanted to go into hospital
To find out what's was wrong........ she said this morning that it was now her biggest fear as she now realises her immune system is so low she fears she would catch covid.
Her son is at the hospital this afternoon, re:cancer
I am pretty sure now they will get expert help in how to approach her multiple problems (or I'd like to think they would. She did tell me that when she went down to the surgery last friday(blood test etc) that the doctor phoned a specialist whilst she was there for advice on treating her legs. Now they have the blood results surely they must seek specialist advice.
She also said that after seeing the doctor she sat back in the waiting room (nobody else there) waiting for her lift and the receptionist asked if she had seen the doctor, yes she replied.....
The receptionist said then you cant sit there you will have to wait outside.
😱
Is it any wonder that this surgery was voted as one of the worst in the area.
I'm assuming one of her deficiencies if B12 deficiency.
Does she have folate and iron deficiency as well?
Have her Vitamin D levels been checked?
Has she has any B12 injections yet?
Important that if she has B12 deficiency and folate deficiency that both deficiencies are treated. B12 treatment would usually be started first. Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
3) Like you, I think it might be helpful to get in touch with MP.
MP's website should have a contact number for MP's case workers or an online contact form.
4) Perhaps she or her daughter could ring GP and/or practice manager and explain that she is deteriorating and ask for treatment to be started.
Might be worth following phone call with a brief letter to GP and/or practice manager outlining the issue. This is proof that issue has been raised. Keep copies.
5) If problems getting treatment continue, they might want to consider going to Press/other media. This is likely to permanently affect relationship with GP but can be effective.
Newspaper article about patient struggling to get B12 treatment in Scotland
She has gone to her daughters, and she did say to me that her daughter would not hold back and give the surgery hell. I even told her to tell them She was going to get MP involved.
I would of adviced her to take B12 and other vitamins, but I was afraid as she said she was low in potassium and salt. I wouldn't even know what to treat first. She is gaunt, her legs are awful, she cant even move her toes. Another neighbourgh came out as we were struggling to get her in the car and she was concerned.
What I didnt know was the doctors has taken her off Iron supplements months of not a year before after years and years of taking them. I assumed she was still on them. So numerous anaemias could include iron.
She did say that she hadn't had a blood test for 2 or 3 years. Which I could not understand as I would of thought having her condition she would of had bloods taken quite regularly.
My friend back home, just phoned had to have further blood test (just 1 vial) they want to double check results.She showed nurse legs and said she had to see the doctor, she told them she had a telephone call book for thursday. THe nurse said that's no good he cant see them over the phone. The nurse disappeared and seen the head doctor and he change the appointment to a surgery visit.
By this time hopefully that blood test will be back.
She said that her mental health is being affected although now she does feel a little better. She stopped antibiotics last week which was definitely draining her.
I'm sorry that your friend has still not started treatment.
She might want to take photos of any symptoms that are visible so these can be sent to GPs if face to face appointment does not take place.
If she thinks she may need to make a formal complaint in future then worth collecting evidence such as photos, copies of letters to GP, copies of test results/medical records etc.
If she has balance issues, other neurological issues and/or spinal symptoms, it might be worth her pointing out to GPs (in writing and in conversations) that not treating, under treating or delayed treatment for B12 deficiency can increase the chances of developing damage to spinal cord. This might make them see the urgency of the situation.
I am not saying she has SACD, sub acute combined degeneration of the spinal cord, I am not medically trained but I am saying that her doctors should be aware that SACD is a potential consequence of B12 deficiency. Can also be a consequence of folate deficiency although I think this is rarer.
See Point 1 in next link, about writing to GP if under treated for B12 deficiency with neuro symptoms.Point 5 is also useful as mentions neurological damage.
B12 deficiency can have a huge impact on mental health, folate deficiency can as well. Hopefully her mental health will improve once her deficiencies are all treated.
No I dont think she has spoken to anyone.I have read on here before that some people have had test results for b12 so low that the they dont record a level. I am beginning to wonder why they are now retesting only one set of bloods, is it a possibility that this could be b12 and the doctors think there might be a mistake with the results.
As regard her sodium levels being low, as she can only drink water I have told her to put a little pinch of salt in it, in the hope this will raise her levels slowly.
Knowing Nackapan's daughter suffered with low sodium there is an article in the daily mail today stating salt is needed for proper nerve function.
Again all in moderation!
The other thing that was noticeable was her big toe..... fungal infection...... when I goggled this again there was a possibility of b12 def.
I will speak with her before thursday and ask her to get levels.
TO put you in the picture of her awful treatment over the years. She has been hospitalised many times over the years with stomach issues, always put on to drip, has had to have salt and potassium many time (which she hates). Around fifteen years ago started to vomit (I won't say what) just to say she was rushed to hospital flashing lights.She was given 50/50 chance and her family were warned she might not survive. This is when they discovered crohn's. She had emergency surgery and was in hospital for a month.
Since then as you can imagine she would rather have the runs than go through that again.
Possibly due to covid and GPs not seeing people
Her health has deteriorated.
So one thing after another, all these things do not happen for no reason, but failure to investigate has been her biggest hurdle with her gps.
With her permission, maybe her daughter can write a letter on her behalf to GP and copies to practice manager. She may need to give signed written permission for someone to intervene on her behalf.
I will keep you updated if only to enlighten people to the pitfull of not seeking further investigations and to educate yourselves in any particular ailment you suffer!
It is so easy for doctors to prescribe medication (in both our cases repeat prescriptions for imodium which resolves the problem but does not CURE the problem).
Might be worth updating the forum on this story by starting a new thread as it's now 15 days old and responses on older threads don't always get noticed. If you do, include a link to this thread.
JUst spoken to her, she said that the first nurse who took bloods told her everything they were testing. The secondRetest the nurse refused to tell her what they were testing other that they were retesting. ( We are both wondering why ?) Have advised her to get the figures as she wants to compare results to her daughter and granddaughters B12 results. Will see how open they are to revealing the results!
The only reasons I can think of for them to refuse access to records is if GP feels it could cause harm to patient.
If she was able to access internet , she could then register for online access to medical records at her GP surgery.
Search GP surgery website for "Patient Access/Online Access or EMIS access" which should then show how to register for online access.
As she currently has not got access to internet, she could write to, email or phone GP surgery requesting copies of all blood test and give date or at least month when tests were done.
I suggest she puts any request in writing as harder to ignore.
GP surgeries have to respond to these requests within a certain time limit although during pandemic there may be some leeway.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If she gets proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case it is needed in the future.
"the nurse refused to tell her"
There is as far as I know no reason to refuse to tell her what tests have been done.
Is it possible that the nurse didn't know?
Sounds a bit strange to me.
Because these days I do tend to confront things, if that was me I would have contacted the practice manager and asked why nurse refused to tell me. Confronting things can irritate the staff.
At the moment confrontation is the last thing she wants ! She is alot wiser now and just awaiting the appointment tomorrow. She is also more clued upon B12, so who knows she might just give them a little bit grief. (No more than they deserve)✊✊😂
Hopefully she'll see a specialist who knows more about B12 deficiency and other deficiencies commonly found with b12 deficiency.
I sincerely hope your friend is listened to and gets the treatment she needs.
If you want more people to comment about what has happened to your friend, I suggest you start a new thread with an update on her story and include a link to this thread.
There may be others on the forum who could offer support.
She has just returned, deep vein thrombosis. Running down from groin to ankle. Doctor said it was one of the longest she had seen. She was told that recovery would be slow , possibly months and months if she was lucky !
She has to return in a month and frequent blood tests.
I have told her to get results, will just have to wait and see........ she knows my views about B12. I will leave it for a few days, let her come to terms with her condition and hopefully have another conversation .
The older generation are alot less inquisitive of ailments and trust there doctors knows best !
As we all know on here doctors are not clued up on B12, if they were we wouldn't be on this website !
Spoke with her yesterday.... in answer to you question is no! I said to my partner she is beginning to sound like my sister who has dementia.... repeating the phrase "you know and that" time and time again.
I'd like to say that I can't believe that Sallyannl's friend has still not started B12 treatment and treatment for all her anaemias but sadly I don't get shocked any more.
Sadly to say even if you are one digit over the minimum, you are not treated. This is why I got blood test results....now the doctors surgery has a note saying not to ask for print out of blood tests on the entrance door !Seems we are going to be denied more and more,
You are not allowed physio for 3 months, have to pay for your own, buy your own b12 and iron tablets. England are having to pay more and more and parking fees. Scotland and Wales are the opposite (not against Scots or welsh in any means)
Just the difference in borders !
And now they are trying to bring in all 60 to 65 years old to pay for prescriptions from april !
My friend just rang from the hospital, She has had a stroke...... lost use of her right side..... MRI revealed blood clot on the brain. They have stopped the medication she was on and now injecting her. They have warned her she could have another stroke but
🤞 crossed hopefully it will disperse. She is not impressed with her consultant, but she said that the foreign (Indian) understudy was lovely and held her hand.She did say it has been a bit of a shock, but she is determined to try and gain the use of her right arm!
She had a dementia test !!!!!! Which was exhausting passing some questions and failing others.
There is a note to test B12 in someone with suspected dementia.
Sadly I'm guessing that the possibility of dementia symptoms being caused by B12 deficiency will be discounted if serum B12 levels are within normal range.
I think all the B12 books I listed in an earlier post mention B12 deficiency and dementia. I think Sally Pacholok's book "Could it be B12" has a chapter on it.
The first film in this link narrated by Sally Pacholok mentions B12 deficiency and dementia, gives case study of a doctor whose B12 deficiency was not recognised until he had developed dementia and neuro damage.
Yes it is! One of the few criteria's for b12 injections. The rest is tablets. To be quite honest I wish I had'nt seen the B12 pathway in gloucestershire... its absolutely abysmal. Even if you are very low they suggest retesting in three to six months by that time so much damage is done. (What you don t know doesn't hurt).
One thing that I think needs exploring is the flu vaccine.Both my friend and partner had the vaccine with in days of each other. Both went down with chest infections , (I know my partner said to the doctor that he had felt awful since having it in October) both been seriously ill since, and in the same way more than you can imagine. Neither could drink coffee, both lost over a stone in weight, the only difference was I managed to get b12 injection into my partner. (He did have a violent headache possibly tia before B12 injection)
Being me I look up stroke flu vaccine and b12 deficiency,
Interesting results and something you should read. I have come to the conclusion that the flu vaccination have affected them both in a detrimental way. We all discussed this just before Christmas the similarities and what caused it and they are of the same opinion NO more flu jabs. (both are borderline b12 def.)
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Dentist and B12
Help re B12 and folate treatment please...
Vitamin b12 
