That there are serious issues surrounding the way in which Pernicious Anaemia is both diagnosed and treated are a given, something that is confirmed by the results of the online survey which is still being completed by new members.
Some of the telephone calls are very sad, and it often involves the person on the other end of the telephone feeling angry and resentful about the way in which they have been treated during the run up to the diagnosis. By far the most common cause of complaint surround the issue of frequency of injections. And there is a worrying trend that seems to be appearing when the GP stops treatment because the patient’s B12 levels are so high.
To amass even more evidence of poor treatment I will be recording the nature of the telephone enquiries and calls that we receive at the office. All telephone calls are recorded by hand, but the content is not available to anyone. So here you will be able to witness for yourself the nature of the calls we receive. All times are a.m. – I get too tired to take calls in the afternoon. I’ll start with yesterdays calls:
Wednesday, 23 Feb. 2011
10:30 am. Telephone enquiry from Bill from Australia. Bill wanted to know if the numbness in his feet might be to do with the Pernicious Anaemia that he had been diagnosed with. Bill was seeing a Neurologist on Thursday. I advised Bill to go to the website and to the Download section where he could download the leaflet on Sub-Acute Combined Degeneration of the Cord Secondary to Pernnicious Anaemia. Bill apologised profusely for taking up my time.
11:40 am. Vanessa from North Wales called. She was on three weekly injections of Hydroxocobalamin but her doctor has now reviewed her medication and has now told her that she must manage on a three monthly regime. Vanessa was very upset and frightened as she feels her condition deteriorates rapidly after three weeks. I advised Vanessa to contact her doctor again and request a gradual change in her treatment. Vanessa had been offered anti-depressants by her GP. Vanessa then asked for the telephone number of anyone who would treat her in the private sector. This I gave her.
Thursday 24th Feb, 2011
09:00 57yr old Femal ‘R’ phoned. Her Grandmother had PA and was wheelchair bound. She has all of the symptoms of PA but her B12 levels remain at 180 mcg/ml. The threshold used by her laboratory is 160 mcg/ml. Her doctor is monitoring her levels but she cannot concentrate, is unsteady on her feet and has no energy whatsoever. She was advised that, if she started taking sub-lingual Methylcobalamin lozenges that she had heard about, then her B12 levels would rise and she would probably never get diagnosed. She will think over the option of consulting a priavate doctor. R is a musician.
09:52 52yr old Female ‘L’ phoned. I have spoken to her before. L had received the results of her blood test that showed her B12 levels were 2,000. She was worried that this would damage her liver. She wanted to know if she should stop her injections. She was worried that, her nurse had told her her levels and then injected her with even more. I told her that as far as I knew there was no risk of overdosing on B12 and that she should discuss her worries with her doctor. L wanted to know more about the Infusions and if it was true that Lady Thatcher used to get injections regularly. I told L that the society didn’t recommend infusions but we had a policy of informing our members of this alternative treatement. After ten minutes on the phone L thanked me, apologised for taking up my time, and the conversation ended.
Friday 25th February:
12:40. F is a 42 yr old Male who has all the symptoms of Pernicious Anaemia/B12 Deficiency. F has not been able to work for ten years due to his health. F is under the care of a Psychiatrist. After a long battle his GP has finally diagnosed B12 Deficiency but will not investigate the cause of the deficiency. F has been prescribed injections of B12 but is unwilling to participate in the treatment regime because he wants a definitive diagnosis. F asked for advice. I told him that I couldn’t give advice but told him that failing to treat the deficiency could result in permanent and irreversible nerve damage. F was thinking of pursuing a negligence claim and again asked my advice. I told him that I was not a lawyer and that he should seek legal advice.
Monday 28th February:
10:12. A is a 69 yr old Female: A telephoned to discuss her husbands predicament. His doctor refuses to prescribe a more frequent injection than the one he receives every three months. She has turned to the private sector and has sourced Methylcobalamin which she has been administering. Her husband has shown slight improvement but she has now exhausted her supply of Methylcobalamin. She asked for an alternative source as her original supplier was quite expensive. I was unable to provide any alternative and I cautioned her against buying from the internet and that if she was going to buy any it should be from a registered doctor.
Wednesday 2nd March:
09:25 D is a 43 yr old Female. D wanted to know why her father started to deteriorate one month after his injection. I told her that this was quite common. D wanted to know why her father’s GP “who is usually so kind and caring” would not allow her father more frequent injections. I explained about the BNF guidelines and that some doctors were not prepared to deviate from them. D was informed of the other alternative and supplementary sources of B12 that many of our members use.
Thursday 3rd March:
07:02 I received an email from a member who had joined yesterday but couldn’t access the website. Jon, the webmaster, sent me an email stating that he had authorised her membership. H is a 51 yr old Female who is extremely concerned about her 83 yr old father. I telephoned her at 08:25. H was in a highly charged emotional state. She thanked me profusely for telephoning her. She wanted to put me on speakerphone so that her husband could make notes – I agreed to this. H’s father has all the symptoms of PA – tiredness, tinnitus, numb feet, balance problems, shortage of breath (sighing all the time and taking deep breaths). His mother (H’s grandmother) also had PA. H’s father has been diagnosed as having “non iron deficient anaemia” and he has been prescribed folic acid. H’s father is deteriorating rapidly, to the extent that when a neighbour visited him a few days ago she telephoned the ambulance and he was admitted to hospital where all the tests carried out were inconclusieve. “I know he has PA but nobody is listening to me” she said. She asked where she could get help and I told her that, although the society doesn’t recommend the use of infusions, but we do have a policy that means we make our members aware of the alternative treatment, she might consider contacting a doctor with this in mind. I gave her the telephone number of one such doctor who is just an hour away from her. H is convinced her father is dying from PA and nobody is prepared to just try some B12. This was quite a harrowing call from a very frustrated lady.
09:47 C is a 46yr old female. C has most of the symptoms of PA. Extreme tiredness, numbness, memory loss, struggling with words. C’s grandmother had PA. Although she has all the symptoms and is convinced she has PA her serum B12 levels remain just above normal levels. She told me she had had three blood tests in the last six months but her GP rules out B12 Deficiency because her levels are above normal. I suggested that she might try supplements of B12. “Oh I already take those” she said. “I’ve been taking them for two years”. I advised that this is probably why her B12 levels are above the normal level. The only alternative would be to stop taking the supplements, but that might lead to irreversible nerve damage. A real dilemma. I suggested she told her GP that she was taking supplements.
11:10 S is a 69 yr old female who has telephoned before. S’s daughter is a doctor who injects herself every two weeks as she has B12 deficiency but has not been diagnosed with PA although she has all the symptoms. S has been on monthly injections for six months as a trial. On Wednesday she had seen her hospital consultant and she presented him with a letter from her daughter stating that S was doing well on the monthly injections and asked for them to be continued. The consultant seemed annoyed by the letter and told S that there was no need for her to be on monthly injections and that she would go back to the three-monthly regime “just like the rest of my patients”. I could do nothing but sympathise.
09:25 MP is a 72 yr old female. MP’s sister has PA and when MP was in hospital for a hip operation she was identified as being B12 Deficient and then diagnosed as having PA. She had been told by a friend that she should be taking Folic Acid. I advised her to ask her Dr. to check her folate levels were fine.
10:05 KT is a 50 yr old who lives alone on a remote island. She has all the symptoms of PA and her B12 levels were low. However she was not treated after her last blood test and only after she had requested a copy of the results did she identify her low B12 levels. She went to her GP and asked if he had missed something. He admitted that she was low and she has been prescribed cyanocobalmin tablets. KT reacts adversely to salt and sugar. She has purchased some Methylcobalamin but has not yet injected because she is fearful that she might have a reaction as there is chloride in the injection. As she is alone and vulnerable she is hesitant about treating herself. She keeps lots of Cyanocobalamin injections for her farm animals but has not used this on herself. I sent her our information pack and reassured her that she could telephone us at any time.
11:15 SP is a 66 yr old female who is struggling on her two monthly treatment regime. She asked for the telephone number of a Dr. who carries out infusions. SP was told of the society’s policy towards infusions and was then given the number of a Dr.
11:35 MH is a 50 yr old male who wanted to know if the lump he has developed in his throat could be attributable to PA. I advised that only his Dr. could be of help but I know that Dr. C associates problems with swallowing with B12 Deficiency.
09:45 JH is a 59 yr old female. JH wanted to know if there was anything that we had published that she could take along to her GP to try and convince her to allow her more frequent injections. She was advised that all we had was the leaflet given out to new members. This was sent to her.
11:00 DW is a fifty two year old Male who has been told he has severe Vitamin B12 Deficiency but whose GP doesn’t think it worth trying to find out why he is deficient as the treatment will be the same – replacement B12 therapy. DW wanted to know if it was his right to receive a full diagnosis. DW was told that this was quite common and the issue of him having a right to a diagnosis should be taken to the local health board.
09.20 MD is a forty yr old female who has just been diagnosed as having Pernicious Anaemia. She had a copy of her blood tests and wanted my opinion on them. I requested that she post these on the forum where the moderators were in a better position than me to advise her.
10:00 LW is a fifty year old female who has been diagnosed as having ME. I had previously spoken to her mother in relation to her daughter who is 16 and shows all the signs of being B12 Deficient. These are always the difficult cases and are always first referred to us by grandparents. LW’s daughter is constantly tired, unable to concentrate and is becoming increasingly insular. Her schoolwork is suffering and now is only taking two GCSEs insteaed of the eight that she originally began. Her condition is deteriorating but just before Christmas her B12 level was 260 where the lower threshold for deficiency was 200. I ran through a list of our symptoms from our symptoms list and the mother commented that, not only did they nearly all apply to her daughter, but applied to her as well. She was also worried that her son, who is 14, is also starting to display the same symptoms and that she will be getting his blood tested as soon as she can. LW wanted to know the telephone number of a private doctor and this she was given.1/3/11
09:45 DE is an eighty one year old male who has been having replacement B12 Therapy for over thirty years. I fully expected him to tell me that his GP had now told him that he no longer needed the injections but DE simply asked for the telephone number of someone who would give him more frequent injections as he felt that he had suffered from under treatment for years and year. He was given an alternative telephone number.
14/3/11 No Calls
15/3/11 No Calles
16/3/11 No Calls
10:45 JL is a middle aged female who has a family history of PA. She is one of four children and the only one born without neural tube defects. Two of her brothers died very soon after being born and one other brother lived until he was seven. Her paternal Grandfather and maternal Grandmother all had Pernicious Anaemia. She is extremely worried about her daughter who is displaying all the signs of PA – extreme tiredness, numbness in her feet and hands, extreme mood swings etc. Her daughter who is 27 has had her blood tested but there is no macrocytosis and the doctor had to be harrassed into testing B12. Her B12 levels have dropped from 280 to 240 in six months and she will not be tested again for another twelve months. JL asked what she could do. I suggested that she ask her GP to refer her to a private Haematologist or Neurologist but warned her that there was no guarantee that either of them would solve the problem.
15/3/11 09:00 – a ring back request. DD is worried that her husband has been told he is deficient in Folic Acid. She wanted to know what that meant. I suggested she post on the forum.
18/3/11 Things are turning hectic here as we start to distribute information about the events coming up.
28/3/11 09:15 VC is a 47 year old lady phoned. She has suffered a stroke, and she has survived a brain haemorrage. She has been diagnosed as having Pernicious Anaemia since 1999 and has managed well on a three-weekly injection although she feels the need for another injection after two weeks. Her doctor has told her that she no longer needs any B12 Injections and they have been stopped. She wanted to know the contact details of a doctor in the private sector and was given this.
10:10 JG is a 67 yr old male who has just been diagnosed. His GP gave him this society’s contact details. He just wanted an explanation of what PA was. He was told and an information leaflet as well as an application form to join the society was sent to him.
10:45 JC is a 47 yr old nurse. Her B12 levels are 130mcg/ml yet she will not get treated until her levels fall below 100mcg/ml because “that is the policy in this area”. JC is a nurse in another area where patients are treated when their levels fall below 180. She has accessed the medical records of patients to confirm this. She wanted the telephone number of a private doctor which was given.
11:25 AC is another 47 yr old nurse who has all the symptoms of PA, and her paternal Grandfather had PA. Her serum B12 is 230 which rose to 243 at the last test. She cannot think properly, is making mistakes in work, believes she shouldn’t be working, has nerve damage and balance problems and has severe fog days. She is not being treated and wanted the name of a private doctor which she was given.
I’d forgotten I had this thread. Or rather I yhave been so busy with the symposium.
It’s not even nine o’ clock and I’ve had two phone calls – both about the frequency of injections and both from members in their seventies – one man and one female. Both had the same problem “I’ve been on monthly injections for forty years and now I have been told I can only have an injection every three months. My doctor was so angry”. Why? Because my latest blood test showed my levels were high.