Hi everyone, so its my DD that has this disease. undiagnosed for at least 2 years, changed medical facility and got diagnosis within 3 visits, so symptoms noticable since she was 13. She has her first injection coming up on Monday 27th. has anyone experienced this at such a young age & any advice for her and me. thanks in advance
First post: Hi everyone, so its my DD... - Pernicious Anaemi...
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Kapitigirl
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Hi Kapitigirl anyone at any age can become Vitamin B12 deficient and it would be good to try and identify why a 13 year old has it.
Is she vegan or vegetarian, has she had any sort of surgery involving the use of nitrous oxide as an anaesthetic including dentistry? Does she have tummy troubles and take antacids? Is she on any other medication?
Do you know if the is a direct bloodline history of Pernicious Anaemia in her family
It is also important to know what her Folate level is as this is essential to process the B12 she is having injected.
We are born with several years worth of B12 which is stored in the liver so you will need to think back to her younger years to see if anything happened, an illness perhaps, that might might have affected her ability to absorb B12 naturally from her food.
I am not a medically qualified person but there are others on here who will be able to give you good advice.
thank you that us very helpful. Not a vegan or vegetarian. She does and has done from an early age suffered with Cyclical vomiting syndrome ( attacks of intense nausea, vomiting, and sometimes abdominal pain, headaches, or migraines) which happens in swarms and she can vomit up to 6 times in an hour, even in her sleep. But this seems to be an historic problem as she does not suffer with them often now.
She also started the pill at 14 to try and manage the pain and migraines caused by her periods, missing college for a couple of days each time. She is on the list to see a gynaecologist, again something the local GP refused to refer her to.
I shall ask about the Folate levels on Monday, thanks for that, as I was not at the initial discussion with the diagnosis as she now goes to a Youth Support branch I only know what she has remembered from the consultation and what she wanted to tell and what I have read on the internet until finding this forum.
I have also asked my GP for a blood test to check me for it, as seem to have similar symptoms.
As I said I'm not medically qualified but certainly a lot of vomiting would historically have affected the levels of acid in the stomach and certain contraceptive pills are also known to affect absorption of B12
I was 17 when I had two thirds of my stomach removed due to a perforated ulcer and I was diagnosed 13 years later with P.A. 45 years ago, but I'm still "clivealive" at 75.
I do hope you manage to get things sorted out and wish you both well
Hi,
Are you in UK? Has she got a definite diagnosis of PA(Pernicious Anaemia)?
Link below about causes of b12 deficiency. it's possible to have more than one cause of B12 defiicency at the same time.
b12deficiency.info/what-are...
The PAS (Pernicious Anaemia Society) has members from around the world, ranging in ages from toddlers to those who are 80 plus.
pernicious-anaemia-society....
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717
There are several PAS local support groups. Most in UK and two in USA.
pernicious-anaemia-society....
I'm too exhausted to write much but have written some very detailed replies in last few days so if you search for them , may be useful info.
B12 info/PA info
1) Pinned posts on this forum
2) B12 Deficiency Info website
Person who runs website can be contacted by e-mail.
3) B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.
Martyn is the chair of the PAS. He has written other books about PA and B12 deficiency. i also found "Living with Pernicious Anaemia and Vitamin B12 Deficiency" useful. was like reading about myself, think has case studies about young people.
"Could It Be B12? - An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart. very comprehensive book about b12 deficiency, lots of case studies.
There is a paediatric version of above book "Could It Be B12? Pediatric Edition: What Every Parent Needs to Know"
4) Martyn Hooper's blog about PA and B12 deficiency issues
There are stories on blog about young people with PA.
5) BSH Cobalamin and Folate Guidelines
UK B12 document gives guidance to UK doctors on diagnosis and treatment of b12 deficiency and PA. I'd recommend reading whole document if you are UK based.
b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.
6) BNF (british national formulary) Chapter 9 section 1.2
evidence.nhs.uk/formulary/b...
7) BMJ b12 article
Most Important thing I learned
it was to always get copies of all my blood tests, in relation to b12 i look at b12, folate , ferritin and full blood count (FBC). I learnt to do thsi after being told everything was fine/okay and then finding abnormal results on copies.
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
I am not a medic just a perosn who has struggled to get a diagnosis.
Hi kapitigirl - or rather kia ora?
From your name and the photo on your home page, I assume you are a New Zealander and/or living in New Zealand?
I am a Kiwi living in Wellington, with PA diagnosed just over a year ago and I have found this a wonderful forum for learning about PA, and getting support etc.
In NZ, we also seem to have many doctors who have little knowledge or understanding of B12 deficiency, PA and related matters, so I am pleased that your daughter has got a proper diagnosis now. I am lucky in having found a doctor in Wellington who is familiar with PA, having family members with it. I do my own injections, including deciding the frequency of these, with the doctor's agreement.
Since being diagnosed with PA in Jan 2016 and finding very little information on treatment in NZ, I have been researching what protocols, practices etc exist here in NZ re treatment of PA and other forms of B12 deficiency, with a view to putting together a summary for other people in NZ. I am a retiree whose work experience included research and analysis so I might as well use my skills and share my research! There are a number of other Kiwis here on this forum.
So, if you are in NZ, I would be very interested to hear what your daughter and you have been told by your doctors - eg loading doses, frequency of injections, tests used to check for PA.
The medical protocols, restrictions etc relating to treatment of B12 deficiencies are slightly different in New Zealand to those in the UK or the USA etc.
Just a bit of summary of what I have found so far:
- These does not seem to be any 'set in stone' NZ medical protocols, guidelines etc on treatment of PA and B12 deficiencies. Treatment - eg frequency of injections - can vary from doctor to doctor. (Still researching these aspects.)
- Hydroxocobalamin is essentially the main form of B12 available in NZ in injection form and the only type subsidized by Pharmac. (Neo-B12). Cynocobalamin used to be used here, but is rarely available these days. Methylcobalamin does not appear to have been used in NZ. (All three types are available in tablet, capsule forms and one or two sprays for general sale.)
- Hydrocobalamin (and cynocobalamin) in injection form are classified as 'general sales' drugs and therefore available over the counter - but many doctors and pharmacists don't seem to know this!
- Those pharmacies that I have approached to buy Neo-B12 ampoules have quoted a wide range of prices from $12 to $25 for the same box of three ampoules. They are also available online from two NZ-based online pharmacies.
- It is legal in NZ to buy needles and syringes to do your own B12 injections - again a lot of medics do not know this. Few pharmacies etc sell these; those that are in the Needle Exchange programme only have a very limited range of needles most of which are not suitable; but a full range of syringes and needles are available quite cheaply from a couple of online medical supply companies here in NZ.
- In NZ, you are fully entitled to copies of your medical records, test results etc. Many medical centres, doctors' surgeries etc now fully computerised and participate in computerised information sharing systems with their patients. Well worth signing up for this.
Enough for one reply. I look forward to hearing from you and am happy to share more detailed information with you if it is of use.
Please note that I am not a medic, just someone who has PA and is working to help myself deal with my condition.
thank you both for the replies, yes we are in New Zealand for Deuto we are in Waikanae but the diagnosis was gained from Kapiti Youth Support Dr's not our family Dr. as I said they were being useless. I shall look at all the links Sleepybunny and see if I can source any of the books. Will up date as to what happens on Monday when we both go and see the Dr.
I will have everything crossed for tomorrow's visit to the GP and hope the injection goes well. Make sure they warm the ampoule if it has come out of a fridge as it is best at body temperature. Rubbing in your hand warms it, but avoid light as the B12 is light sensitive and deteriorates.
I find the top of arm injections sting for an instant like flu shots; but I now self inject into my thigh muscles and I now rarely feel it at all. It is over and done with from start to finish in about two minutes and I don't have to travel to Doctor's and pay $20 - $25.
The links for reading provided by Sleepybunny are must reads.
Re the books by Martyn Hooper and Sally Pacholok, I recently checked with Wellington Library for these and they do not have them, but both Sally Pacholok's books are available for interloan from Auckland Library, plus Martyn's latest book. Interloans cost about $14 per item. Ouch. All are for sale through Amazon etc.for about NZ$27 - 40 each from memory, but I have not found any NZ stockist.
Good luck - and let us know asap.
I am actually looking at selling up (Island Bay) and moving up your way, Waikanae or possibly, Otaki or Levin. Need to capitalise my property and free up cash for living.
Reading over what I have written, I realised that I had not mentioned that Neo-B12 hydroxocobalamin ampoules are available by prescription subsidized via the Pharmac system. (They only cost the system $2.81 per three ampoules - not exactly expensive.)
The standard 3 month prescription is for 6 ampoules, but doctors are able to prescribe more. My original doctor did two weeks of injections every second day and them monthly for six months.
I then found out another doctor at the practice was 'up with the play' on PA (as mentioned in my first reply) and I still get 6 ampoules every three months on prescription and buy additional ones myself. ($12 for the box of three from the pharmacy at Countdown in Newtown!)
After experimentation, I am currently injecting weekly or about 10 days. Monthly did not work for me.
so tomorrow need to ask about folate and ferritin (?) levels and how often they need to be checked? anything else?
In terms of your daughter's blood tests which led to the diagnosis, I suggest you also ask what tests confirmed the diagnosis. EG Full blood count tests, Intrinsic Factor antibodies tests. It would be great if you could get copies of all of her test results, but I understand the situation with the Kapiti Youth Support. You daughter may need to give her consent to the results being provided.
Re blood tests for yourself, hopefully the doctor will order a Full Blood Count, Iron Studies (iron and ferriton), VitB12/folate as a start/minimum.
Ideally the following tests will also be done at the same time (in my case these were done after the results of the tests mentioned above had been received):
Intrinsic Factor Antibodies, Parietal Cell Antibodies
Celiac test; liver function tests; HbacA (for diabetes); thyroid function tests.
Best wishes for today.
Hi good luck with appt,
Perhaps ask about full blood count results (may be called complete blood count (CBC)).
Some people experience a drop in potassium levels when they start treatment, is doctor going to monitor potassium levels?
Perhaps there could be a New Zealand PAS group?
pernicious-anaemia-society....
I think PAS (pernicious anaemia society) can give support to those starting a new group.
A NZ group would be great and that is why I am documenting what the situation is here in NZ with a view to starting a NZ PAS group aligned to the PAS if people here are interested. Or as a minimum having a detailed post on the NZ situation that can be referenced/pinned on this HU site.
sorry its late, work and life gets in the way. Right so her B12 levels were low but not so slow that she will need more injections straight away, next one is in 3-4 weeks time. All other results apart for the IF one, so she does have the antibodies.
KYS Dr is contacting a paediatrician to see if there should be anything else that we should be doing for Dr.
Apparently she may get Child Disability Allowance but who knows, something we may have to look into and I will let you know.
Must say it did seem that I taught the Dr a few things from reading your comments and asking questions and elaborating on other issues. So greatly appreciate.
Hi Kapitigirl
I am pleased that the KYS doctor is following up with a paediatrician, and I really hope they have some knowledge of B12 deficiency etc.
From your latest reply, do I take it that you were told (but did not see the results of your daughter’s blood tests) that she tested positive for Intrinsic Factor antibodies, but as her B12 levels were only slightly low, they gave her one injection yesterday with another one possibly in 3 to 4 weeks time?
Are they going to redo the B12 test before this second injection? If her B12 level is better, will they still give her the injection?
If an IF antibodies test is positive, this means the person definitely has PA – and should receive B12 injections for life regardless of the level of the B12 blood test results.
Does your daughter have symptoms in addition to the cyclical vomiting syndrome and bad periods? Neurological and other symptoms (pins and needles, numbness, lack of concentration, depression etc) as a result of PA (or other forms of B12 deficiency or other auto-immune conditions) can appear long before there is any anaemia, and B12 levels can also be normal or low normal even where Pernicious Anaemia is confirmed.
It concerns me that the doctor may think that one or two injections weeks or months apart will resolve the issue based solely on raising your daughter’s B12 level. I would hate to see someone so young left with the other PA related symptoms for life due to doctor ignorance and focus on just raising the B12 levels.
As it may take some time to get hold of Sally Pachalok’s book on PA in children, I remembered that there was an excellent article on B12 deficiency in children by the Stichting Tetork Institute in the Netherlands. This is a medical research institute dedicated to improving the diagnosis and treatment of B12 and folate deficiencies. One of the pinned posts on the home page of this forum is to their articles in English.
Here is a direct link with the article re children which you may find useful as it focuses on possible symptoms, treatment, B12 levels at various ages etc.
stichtingb12tekort.nl/our-e...
BUT what about you? Are you going to be tested?
On rereading the article re children, I am kicking myself that I did not remember this before your visit to the doctor. It is short, concise and I can see some bits that seem directly relevant to your daughter - eg vomiting etc. It would be an excellent piece to give to your doctor.
Thank you, no Dr did tell us she will be on it for life, hence her giving the details for Child Disability allowance. Also says she will need to ask for full blood counts at least once a year and keep thyroid in check. As it will be her we go back to she will no doubt arrange for that. We have a script for 3 injections, which they can hold for her, chemists are only allowed to hand out 3 at a time apparently.
She has the memory loss, vision problems, headaches but no numbness or tingly.
That article is very interesting as I had problems in all my pregnancies, had pleurisy and bells palsy with Kat whilst pregnant and then she had to be blue coded 3 times over the space of a week for weight loss at a couple of weeks old, trying to breast feed and failed but she just didn't let us know, until one day when we couldn't wake her. Hospital insisted that I must maintain breast feeding at all cost and not go to bottle. After the 3rd blue code and still weight loss despite me basically breast feeding non stop my GP came round and sent my husband off to buy formula and bottles, and she never lost weight again.
Also makes me think if should get the youngest tested as well as had problems during pregnancy with him and he nearly died. umbilical cord was not functioning properly and surgeon said it had practically given up and LO would not of made another day. So the comment on that article states lack of B12 from mother during pregnancy. Would rather nip it in the bud for youngest as soon as possible. Unfortunately he cannot go to KYS for another 2 years.
Right, I thought you were seeing your family GP, but I now realise you saw the KYS Doctor. I am really pleased that she seems to be on to it and open to learning, but I am still cynical that one injection a month for example will do much. It may raise your daughter’s B12 blood levels, but the loading doses where injections are given a day or so apart for a couple of weeks are what starts to help the other symptoms. The injections then need to be as frequent as is required to continue to relieve or get rid of these other symptoms. Every one is different as to frequency needs.
Here is the result of a poll the Pernicious Anaemia Society did asking people how often they needed injections.
I am pleased you found the Stichting Tekort Institute article of use. You must be feeling overwhelmed with the amount of information you have been hit with in just a few days!
When you have time/energy, I highly recommend you work your way slowly through the other ST articles, particularly the ones on either side of the children’s one on the first page plus the ones on misconceptions about B12 deficiency and safety over 50 years.
Because the Institute is a medical research facility, I have found that medics I have spoken to have been more open to this research and their findings, than advocacy and patient peer support groups such as PAS and Health Unlimited. Any which way to educate them!
I am also so sorry to hear the difficult times you had with your little ones and so pleased that you all came through. I actually lost two in the first trimester as I could not implant properly and did not attempt again. A long time ago but the diagnosis of PA a year ago at 68 meant that a lot of health problems over the years fell into place like jigsaw parts. I have wondered but will never now whether my inability to implant was related.
I want all of you to be tested! In this regard, I have a few things I want to say/suggest that are very specific to your situation and location and perhaps inappropriate for this open forum. Health Unlocked also has the ability to send direct private messages through its system so I will send you a direct message in the next day or so.
Oops - forgot the poll link. The poll is actually the first one in the Polls drop down box in the Home bar at the top of the page. Here is a link.
You might also be interested in some of the others, particularly the one on Endometriosis in view of your daughter's period problems.
Cheers for now
GP is refusing to issue blood test request without me seeing him so have to pay $56 to see him to get the paperwork. They said I could go have the tests done but then I would need a DR to read the tests. Sure you guys could help me out on that one??
Hi again. I have not yet sent you a direct message but hope to do so later today.
Yes, people here can help out reading the test results but you first need to get the tests done and then get the test results.
As you and I are here in New Zealand, our medical system re getting tests and the results are probably slightly different to those in the UK, USA, Australia etc.
My understanding is that here in NZ, the doctor can require a visit before issuing a test request to discuss the need for test(s) and which tests will be done. (On the other hand the doctor can also issue a request for the tests without a visit. The forms for the tests can also be sent by the doctor directly to the laboratory by email etc)
As you are in Waikanae, the tests will presumably be done by Wellington SCL which does all public health system medical laboratory tests in the Capital and Coast District Health Board (DHB) area. SCL have a collection centre in Waikanae.
Under NZ law, you are entitled to get copies of your medical records, including lab test results. There are two ways for you to get your actual test results.
(1) From the doctor/medical centre.
(1a) They may give you the results over the phone or require you to visit the doctor or nurse to discuss the results, and to get printed copies of your results.
(1b) Your doctor/medical centre may also have a computerised system such as Manage My Health which seems to be the most common one in the Wellington area at least. If they have, you need to be signed up for this through your medical centre to receive your records and lab results via this method.
BUT the doctor must sign off the results received from SCL before they will appear on these computerised records, so the doctor can withhold the release of lab results this way until the doctor has discussed the results with you.
Way No 2!
(2) From SCL directly.
Although SCL prefer that patients get their results from their doctor, they can also send the results to you directly via email and their computer system.
You must sign a form requesting this at the time you go in for your tests. You are then given a card with a code.
The results will then be sent to your doctor first to give them time to assess, contact you etc, and about a week later SCL will send you an email that the results are available. It is quite a complex system where you then use your code to get the computer based results - but it bypasses your GP!
Here is the link to SCL's website page re this system.
It sounds to me that your GP is being really obstructive considering your daughter's diagnosis etc. Nose out of joint/guilt that someone else (KYS doctor) found the problem he had missed for years?
Direct message will cover further suggestions re GP.
Thought I would document the procedure in NZ here rather than by DM for anyone else who is interested - for example, in how it compares with UK etc.
Keep your chin up. Where there is a will, there is a way!
now path lab are saying it is not something I can request myself and would need the Dr to refer me. so angry right now
Did not see this until after sending my reply above. I was actually just looking up the SCL section on self requested tests and costs
apath.co.nz/patient-self-re...
Seem to be able to get CBC (complete blood count tests) but not B12, folate, Intrinsic Factor Abs etc.
It does not surprise me.
Just 6 - 7 years ago, Aotea Pathology (SCL's predecessor) sent out a message to all medical centres etc in their area in NZ saying that doctors were requesting too many B12 tests!
They based this on results from some obscure research study in Ireland that suggested this. Found the message on Google, so must re-find it and screenshot it for my research information.
Need to go out for a few hours. Will DM you later.
Deuto - could you please give me the details of the Dr you say has some knowledge.
Is there a support/advice group on FB for NZ sufferers does anyone know??
Not that I know of. That is why I am starting to get information together about PA and B12 Deficiency diagnosis and treatment together - with a view to setting up an advice/support group.
Hopefully if there is one, someone will let us both know.
Last night turned to custard, so did not get to send you a DM. About to start drafting it - been trying to find out whether there are any GPs up your way that might be familiar with PA. Will pass on what I have found out by DM as not prepared to give names etc on this open forum.
I'll start one and see what happens, thanks you have been brilliant.
Good on you! I might even join Facebook now.
Have drafted direct message to you but am having difficulty sending it as it does not allow me to fill in the Recipient box. Your name comes up but then it won't accept it in the box. Grrr.
Too much private detail to post here.
Will keep trying, re-read the help etc.
Hi,
I know in past Martyn hooper. chair of PAS has been contacted by medics not in UK. Just wondered if your doctors would find it worthwhile to speak to him.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717
There is also a section for health professionals on PAS website. think most info is based on UK but may be something helpful for your doctors.
pernicious-anaemia-society....
Good suggestion, but just as in the UK, in NZ we have good doctors open-minded to learning, and others who are not. Medical training here is up with the rest of the world but has little focus on nutrition, role of vitamins etc on health etc.
So in terms of PA and other forms of B12 deficiency, in my humble opinion, doctors here are on a par with the situation in the UK (I lived in the UK for seven years so am familiar with the NHS system; also seven years in the USA).
My doctor(s) is pretty good. We have shared information etc easily about PA testing, treatment protocols, how to get B12 supplies in NZ, and sources of info such as the PAS and Stichting Tekort Institute.
In this case, it is a matter of finding a good doctor for Kapitigirl and her younger child/children close to where they live.
One thing about NZ is that we have a much smaller population than the UK (c 4 million) in a similar size country. Information about the good ones and bad ones (of doctors etc) is easier to find out and pass on - think village gossip network rather than big city!
I have sent some suggestions etc to Kapitigirl via DM - BUT doctor's names, reputations etc is not something to put on open forums such as this. We have privacy as well as defamation laws here too!
I have found out that a FB friend was also diagnosed 2 years ago, lives in Upper Hutt and she has found it difficult to get her Dr to prescribe her enough B12 injections to make a difference so she is ordering it herself from US and self injecting. Will have to go back through her messages to see what else she has said as forgotten at the moment.
GRRRRR!
Your FB friend does not need to order B12 from the US.
As I said in my first reply to you, Neo-B12 (Hydroxocobalamin) injection ampoules are legally available over the counter here in New Zealand. These are the same ones that are prescribed by doctors.
I buy the box of three ampoules from the pharmacy in the Countdown at John St Newtown for $12.
Not all pharmacies carry it or will sell it BUT it is legally classed as for General Sales. Prices can vary up to $25 (Unichem). You can also buy it online here in NZ for about $17.50 for the box of three.
I bought - legally - 100 syringes, 100 draw-up needles and 100 injection needles from Capes Medical Supplies in Tauranga for less than $40 including courier delivery. Pharmacies don't usually stock needles etc. but available from a number of online medical suppliers.
I have researched all the legalities, have checked with the appropriate authorities etc, and have the references and links to the legal documents.
Interested in what else she has said re her treatment etc.
Did you get my DM?
EDIT/PS - I remembered that in one of your replies, you said that you were told that chemists could only give out three ampoules at a time.
Sorry, this is BS because the B12 injection ampoules are not a restricted drug and are classified as 'for general sales' here in New Zealand.
They come in a box with three ampoules, but my first prescriptions were for 10 ampoules per prescription and had no problems being given them all at once. I have also bought two boxes at a time with no problems.
Because of the age/nature/problems of some of the young people who attend the special youth health services, they may have a policy of drip feeding prescriptions for these reasons. Not suggesting your daughter falls into these categories!
Just checked. No Pharmacy in the Upper Hutt or Lower Hutt Countdowns yet - they are slowly introducing them around the country.
Countdown Petone does have a pharmacy. Prices should be the same as Newtown.
For non-NZ readers, Countdown is one of two major supermarket chains in New Zealand. It is affiliated to or part of the Woolworths supermarket chain in Australia.
So I am on a mission to get PA well known in New Zealand, hopefully with the help from others living in NZ, Dueto your on my list and others please get in touch via PM.
Well DD has still not been offered any further injections until a month is up but has been given script for Thiamine as that was also low. SO I decided to read the leaflet that comes in the Neo-B12 packet. In the dosage and administration section it states:
Initially 250-1000 micrograms intramuscularly on alternate days for one to two weeks, then 250 micrograms weekly until the blood count is normal.
Maintenance: 1000 micrograms every two to three months.
So I have emailed this information to her Dr and am awaiting her response. This information needs to be made aware to all Dr's. as my daughter is suffering daily and god knows what damage it is doing to her body.
Hi,
Above I mentioned Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency".
He has also written two others about PA and B12 deficiency, one of them "Living with Pernicious Anaemia and Vitamin B12 Deficiency" contains several case studies including at least 2 concerning young people.
PA stories about young people. I found these upsetting to read but thought your doctor might be interested.
martynhooper.com/2016/08/19...
martynhooper.com/2015/02/10...
PAS members contact PAS from around the world so possibly worth joining?
pernicious-anaemia-society....
link below mentions australia
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