I'm new here so please forgive me if this has been posted already. Currently on the long and horrible journey of diagnosis which to date has involved multiple GPs, ENTs, Neurologist and Naturopath. I have a B12 reading of 170 pmol/L and had to beg the GP for B12 injections. I've had 3 over a course of 3 months and she's now making me wait 2 months for the next blood test before I can have anymore. I am virtually unable to function, suffer from extreme fatigue, nausea, continual headaches, facial numbness, sharp muscle pain, tinnitus, blurred vision, memory loss, run into things all the time, and have painful periods which are getting worse... I'm only 33. Over the years I've been (mis) diagnosed with PCOS, depression and hashimotos and have now been told to get a brain MRI. I am desperate to find a Dr or specialist who truly understands and is willing to listen and treat a B12 deficiency.... the more I read about it and its symptoms the more convinced I am that it is what I've got. I live in Sydney Australia. Would appreciate any suggestions or help.
Does anyone know a good GP or Heamato... - Pernicious Anaemi...
Does anyone know a good GP or Heamatologist in Sydney AU
Thanks, I'll give that a go.
I am in Sydney Australia. My experience is similar to yours. I am afraid I don't know of a GP or haematologist who understands B12 deficiency very well. I will send by private message details of a medical practitioner in Sydney who I think has a reasonably good understanding.
Did you get any improvement from your B12 shots?
Has your folate been tested? Folate deficiency can cause symptoms similar to B12 deficiency. Even if you are not deficient in folate it is generally considered safe to take 200 - 400 micrograms of folic acid per day, or a B complex containing a similar amount of folic acid. If your folate is very low you may need higher doses of folic acid, but then your folate should be tested often and your folic acid dose titrated carefully.
Hydroxocobalamin for injection is available in Australia without prescription, although I now get it in bulk (100 ampoules/pack) from one of the German pharmacies. I buy syringes, needles, sharps box etc from medshop.com.au/. I either inject myself or ask one of my daughters (both nurses) to inject it. I have also had GPs at a local bulk billing practice inject me without problems.
The only sure way of proving whether or not your problems are due to B12 deficiency is to have 1000 microgram B12 injections every 2nd day for 2 weeks or until your symptoms stop improving. Then your jab frequency can then be reduced to the minimum required to keep your symptoms under control. Once you have started on injections, B12 tests are almost useless and shouldn't be done. Your total serum B12 should be high.
Thanks Martin_12, I felt really good for the first couple of days after each shot. The problem is since I finished my last one in August, the symptoms have now got worse. It's the neurological pain and symptoms that scare me. I have a phobia of needles which I've had to work hard to overcome in the bid to get to the bottom of all this; I don't know how I'd come at injecting myself but I guess I'll get over that too!
I've just had more blood taken for B12 and folate so will see what that comes back with. If you could send details of where you get your injections from I'd appreciate it.
TYVVM.
If B12 shots reduced your symptoms substantially for a few days that is strong evidence B12 is what you need.
Are you asking for where I buy B12 ampoules? I initially bought B12 for injection from Chemist Warehouse, or my local pharmacy. All pharmacies should keep it. Buying B12 from the German pharmacies takes a few weeks. I can give you details of those pharmacies if you want to go that route. In the short term you are probably better off buying it form a local pharmacy.
When I was having a local GP inject it I just took an ampoule to him and asked him to inject it. He never argued.
Thanks Martin, that helps. I'll go down the route of purchasing local and see if it works. Will reach out to you for the German supplier if it looks to be long term.
Here is the product information sheet from one of the Aus B12 manufacturers:
ebs.tga.gov.au/ebs/picmi/pi...
It confirms 1,000 micrograms on alternate days for two weeks for neurological symptoms. In the UK the recommended treatment is a jab on alternate days until symptoms stop improving. That is what I did. Many people on this forum find that one jab every 2 months is not enough for maintenance. I am having 2 jabs per week.
Thank you.
Hi
In Brisbane so cant help with Sydney however I do use the information on this site to discuss with my GP. There are not as clear guidelines that I have found in Oz.
Did the neurologist not request brain and cervical spine MRI? Are you having a follow up with neurologist? Did the neurologist request any further investigations?
Are you in a position to see a neurologist privately? Have you seen the same GP for a long time? Sometimes getting a fresh pair of eyes helps
Do you have any nurse friends or considering self injection?
B12 is pharmacy med $8-15 for 3 vials dependent on pharmacy, the needles, swabs, syringes easily obtained online from the likes of Independence, Medshop, Medisupplies and numerous others.
Hope you find GP/Neurologist who helps 😀
I was referred to a Neurolgist by my ENT who can't get to the bottom of why I keep losing my voice every 2-3 weeks which has been happening for the last 6 months. The brain MRI is a result of the numb face, nerve pain and tinnitus. I will be seeing the Neurologist again once I have the scan.
I've been to 3 different GPs in the last year 
our old family dr retired which was unfortunate. Each of them tell you a different thing, from prescriptions for anti depressants (worst thing I ever took) to chronic fatigue to just not believing you. It was a holistic naturopath that picked up B12 deficiency - GPs never thought to even test it.
I dont have any nurse friends... I'll try the GP but I honestly have my doubts that she'll come to the party till I can prove my body doesn't absorb the stuff properly.
It's all a bit of a nightmare, do you take anything for reflux? Only asking as I used to loose my voice and was told reflux, the meds for reflux can cause issues with stomachs ability to absorb B12.
I have follow up with Neuro next week following MRI's, took 10 months of back and forths to GP and referrals to hospital gen medicine/neurology/gastro and still on the tredmill so understand.
With alternate day injections for neuropathy I have made it to twice weekly but this has taken 3 months and still dont know the reason for issue with B12 as not intrinsic factor (according to blood test)
ENT tried me on reflux meds for 2 months - lost my voice 3 times while on them so they figured that wasn't the cause. Did reflux meds fix your voice problem?
B12 deficiency can cause voice problems.
pubmed.ncbi.nlm.nih.gov/217...
The fact that each B12 shot improved your symptoms briefly should be enough evidence for the GP to at least give you a 2 week trial of B12 jabs every 2nd day. You will probably be a new person after 2 weeks. If I were in your shoes I would be looking for another GP.
This is becoming more and more enlightening. The symptoms all stack up - will be very interested to see the latest blood results when they come back. I'll be moving on, yet again, if she won't give it or I'll suck it up and learn to self administer.
It is very well known that the standard total serum B12 test is not very good at diagnosing B12 deficiency in people with neurological symptoms. Eg:
pubmed.ncbi.nlm.nih.gov/208...
pubmed.ncbi.nlm.nih.gov/154...
If your blood results show a "normal" B12 level that does not mean that you are will not benefit from jabs. As Solomon says in the 2nd article, the response to B12 jabs is the best method for diagnosing B12 deficiency.
Well my active B12 test has come back as 120, which I'm told is very high. So looks like I dont fit in here as having a B12 deficiency and the long and complicated journey continues. 😢 Folate was 9 which is also high.
Mines 128 and folate is 10.84 and still I have host of symptoms . My experience has been it's just the symptoms and and response to treatment. The levels can misleading.I read a huff post article that's on medium as well about a runner who maintains her serum levels at 2k.
Wish you sound health.
If your symptoms are consistent with B12 deficiency and are relieved temporarily by infrequent B12 injections, you really should persist with at least getting a proper trial of loading doses. Your B12 could be high because of your previous jabs, even though the last one was 2 months ago.
stichtingb12tekort.nl/engli...
This is not a trivial issue. If your symptoms are due to B12 deficiency and you delay too long before getting proper treatment, you could suffer permanent neurological injuries.
High dose B12 treatment has no known adverse effects, but the consequences of inadequately treated PA can be devastating.
stichtingb12tekort.nl/engli...
It would be worth having an intrinsic factor antibody (IFA) test before you have any further B12 shots. A positive IFA test proves PA. However, even if you truly have PA, there is a 50% chance that your IFA test will be negative.
I get it, but the worst part of all this is I now cannot convince this GP to give me anything more than once a month B12 shots. I tried watching a video on how to SI and nearly passed out. I don't mind someone else giving it to me... if I only could find someone to do it.
It's so frustrating given I have all the symptoms, previous B12 injections helped and you can't overdose. I just don't get the logic of GPs to hold back from trying to help.
A positive intrinsic factor antibody test should convince any GP that you need proper treatment. Other tests that might help you are homocysteine and methylmalonic acid (MMA). Homocysteine (HCY) tests are funded by medicare, but MMA is not. MMA tests cost about $200 and might take a few weeks. HCY is increased by B12 and/or folate deficiency; MMA is increased by B12 deficiency. Both might be normal due to your previous B12 shots. The haematologist I mentioned in my PM might instruct your GP to give you B12 shots. You will need a referral from your GP.
Thanks Martin, really appreciate all your help. Found another GP today that has happily agreed to give me B12 shots every week for the next 4 and then once every two after that. I have an appointment with the Neurologist and will go from there.
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