What do I do??!!

Be warned this is a long post/question !!

I am having a load of medical issues over the past 4-5 years and recently I have been diagnosed with PA. This all came to a head in May this year. But let me start at the beginning.... (I asked and received all my medical notes from the last 6 years from my GP and I have been through them with a fine tooth comb.. Although not medically qualified, I know a little of quite a lot!!)

In June 2011 I had some blood tests done, and although I didnt have a B12 Serum test, 2 indicators that say I may have an issue with B12... Nothing was done.

Slowly but surely, my symptoms began to mount up particularly memory, co-ordination, concentration, easily distracted, speech, lethargy mood swings bad skin, nails (ridges, breaking weak) and hair (breaking and falling out). Then in November 2013 I had an event that was symptomatic of a TIA slurred speech, when swallowing it almost felt like the side on my throat collapsing, unable to formulate words, incoherent, massively bad headache, though no physical evidence was found via MRI or CT scan. My Husband was beside himself as was I as my Father had a catastrophic Stroke in 2006 and I nursed him till he died of cancer 14 months later. I saw a Stroke Consultant who said it was improbable I had a stroke but as a prophylactic measure he prescribed daily low dose aspirin.

Roll forward to May 2014 and symptoms still mounting up or increasing with ferocity, my Husband was concerned especially memory mental foggyness concentration lethargy and odd numbness at the back of my arms. I lost my job due to my really bad memory. I called and saw my GP the same day, I sat in his office and said basically I was leaving until he helped me. I had a blood test that revealed a B12 count of 126 and hypothyroid was at 5.9 as opposed to the count in 2011 of 2.1. Without explanation of what it meant, other than it was PA, I was booked in for B12 injections loading course, with the nurse the day after and as I failed one question on a memory test I was referred to the Memory clinic in the department of Elderly Care (My Hubby thought this was quite funny, being as I am 41!) As always I looked to the net to read up on PA. I wanted facts so I stuck to medical and science entries not FB groups etc, and what I found was all relevant, even down to the "Stroke" symptoms.

BUT I still attended the Memory Clinic.. The Consultant started by saying he looked at my MRI results and said I DID indeed have a stroke!! I was completely flabbergasted!! I was not prepared for this at all. I was just there to do a memory test. I tried to counter him by saying medical evidence show this could be down to PA and he said no, and I shouldn't be reading from Google searches. I am not one to be pushed over and replied saying it was a article I had read and showed him the print out. He didnt even look.

I was referred back to my Stroke Consultant who was surprised to see me but concurred that I may be quite right. I left happy with that appointment.

I was also referred to a cardiologist for 24 monitoring, which resulted in nothing significant found and now I am due to have a camera down my throat so they can check my heart!

All this and my symptoms are getting worse again and if I was honest they didn't truly disappear after the loading doses.

Which brings me to yesterday when I called the GP to ask for a B12 injection to help. I know Im not due one until September but I cant wait that long considering the degradation of my symptoms. I intended to to recite the NICE guidelines at him which indicates that if one is still symptomatic, one should have a top up. I have also learnt that after the loading dose a blood test should have been done to indicate current levels...I got a call back from t he practice nurse who said no. I have to see my GP for it to be prescribed and that too much B12 would cause bleeding to the back of my eye!!!!!!!

OMG is this true??? I cannot find any evidence to back this up!? Do I need to do anything to increase my chances or securing an additional dose. I am more than happy to self medicate, do I / can I get a private prescription??

I still feel like I am in no-mans land with this all!!!

10 Replies

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  • Hi Morgan

    Welcome here, I am sorry to read your story and hope you will get the treatment you may need soon.

    I am no medic, but your Nurse's comment ( too much B12 would cause bleeding to the back of my eye) seems hard to accept and it may be helpful if you ask her to give you evidence of research/ anything that substantiates her comment. As far as I know there is currently no known harm from to much B12, naturally it does depend in what circumstances and people with heart conditions should be monitored (particularly initially with starting B12 treatment as a drop in pottasium can occur, platelet count can rise etc.

    Perhaps this may help you see:

    emedicine.medscape.com/arti...

    "Contraindications & Cautions

    Contraindications

    Hypersensitivity to product; sensitivity to cobalt

    Cautions

    Intensive treatment of B12-deficient megaloblastic anemia may cause hypokalemia and sudden death

    Nasal disease; defer use until symptoms resolve

    Use with caution in patients with Leber optic nerve atrophy

    Injection is incompatible with some common drugs (eg, warfarin and several phenothiazines) but is compatible with vitamins B and C

    Vitamin B12 deficiency for >3 months results in irreversible degenerative CNS lesions

    Thrombocytosis may occur with treatment of severe vitamin B12 megaloblastic anemia

    Oral and intranasal route are not indicated for the treatment of pernicious anemia until symptoms resolve"

    reference.medscape.com/drug...

    "pharmacist.

    SIDE EFFECTS:

    Pain/redness at the injection site, mild diarrhea, itching, or a feeling of swelling all over the body may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.

    Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

    This medication may cause low potassium levels in the blood (hypokalemia). Tell your doctor immediately if any of these unlikely but serious side effects occur: muscle cramps, weakness, irregular heartbeat.

    People who have a rare blood disorder (polycythemia vera) may infrequently have symptoms related to this disorder while taking cyanocobalamin. Seek immediate medical attention if any of these rare but very serious symptoms occur: chest pain (especially with shortness of breath), weakness on one side of the body, sudden vision changes, slurred speech.

    Get medical help right away if you have any very serious side effects, including: swelling ankles/feet, trouble breathing, unusual tiredness.

    A very serious allergic reaction to this drug is rare. However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

    This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist"

    and:

    pernicious-anaemia-society....

    I would have thought a camera down your throat would be to check your gastric tract, but again I am no medic. I've had TIA type episode years ago, slurred speech, electric shocks down to little fingers and mouth, it was dealt with iron and folic acid tabs, I do have a (flow) murmur, so being anaemic (what ever the reason) can put to much pressure on your heart say, which explains in my mind why you should be monitored I think.

    I hope this helps you a bit further, this link may help you further should you wish to go private, see:

    pernicious-anaemia-society....

    Kind regards,

    Marre.

  • It is quite frightening how little a lot of medical practitioners seem to be when it comes to B12.

    The dutch equivalent of the PAS has an article - someone posted it some point this year - on someone who tried to sue his GP in Netherlands because he thought that treatment with B12 had made him ill. They ruled that the GP concerned was not culpable because it is not possible to overdose on B12 which rather implies that it isn't going to cause any bleeding at the back of your eye.

    You could try to get a private prescription for B12 but it could be quite expensive. Other options are ordering B12 phials on-line, eg from Germany or trying a different form of B12 - eg sub-lingual tabs, patches or nasal sprays, which aren't covered by the prescription only rules in the UK. For me using a nasal spray (hydroxocobalamin) has been an utter godsend.

    You could also try regular day-trips to the continent - you can get shots at a pharmacy without prescription in most of the continent.

  • I would also focus on finding out more about your thyroid.

    thyroiduk.org.uk/tuk/about_...

    The above link will give you some idea of the myriad of signs and symptoms connected to a mal-functioning thyroid. Maybe you have Hashimotos - the auto-immune version of thyroid illness. If that should be the case then low minerals and vitamins can go hand in hand....Low Iron - folate - Ferritin - B12 - and VitD. All need to be high in their ranges and Ferritin around 70/80/90....

    Thyroid testing should involve - TSH - FT4 -FT3 and Anti-TPO - Anti-Tg. Just testing the TSH is NOT sufficient and does not tell the full story.

    I have Hashimotos and have weekly B12 injections due to Crohns as well . I live in Crete so things are a little easier buying over the counter and self treating.

    Another thing to remember is that only 20% of the B12 in your blood test is available to be utilised at a cellular level - where it is needed....

    b12deficiency.info/signs-an...

    The above link will tell you that in Japan the level for B12 starts at 500-1300 and neurological damage can happen below 350/400.

    youtube.com/watch?feature=p...

    Professor Smith begins to talk around 4 minutes into the video....

    Apologies if you are aware of all these things and I am merely repeating information you already know. I have only learnt from others that know more than me and have found the links useful to have as a point of reference.

    Hope you soon feel better....

  • Bloody idiots. They all need retraining.

  • GP's are a law unto themselves.

    To have a GP who will think outside of the box, to be broad minded enough, to consider, maybe, this is something he doesn't know, and will endeavor, to find out about.

    They have completed their medical training, so for a patient to put forward something, he may have read, to his GP, it would only fall on deaf ears, and bruise their delicate ego's.

  • I would say: some GP's, not all, are a law unto themselves.I have only met, a mere handful.

  • Thanks for all you help comments and info. I did call my GP for a B12 "top up" and was told I had to have a blood test first. This is tomorrow, results in 1 week, B12 due in 3 weeks!!

    I did very briefly join the FB page, but I found it a bit like a bunch of people asking things like (I kid you not) "I banged my toe on the coffee table and the bruising looks a bit darker than I would normally bruise it must be lack of B12 so I must need another jab!" I mean, I know it accounts for quite a bit of sign and symptoms... but really?? Its like a bunch of drug addicts discussing ways to get more hits!! lol

    I also finally contacted my mums sister in law who is a professor in cardiothorasics as I wanted advice for my TOE Test (trans-oesophageal echocardiogram) and she said there is evidence that PA sufferers may.. sometimes suffer from heart damage. That would explain the reason for the test. But to be honest, the amount they have spent on the tests, investigations and consultants time (all 3 of them so far) and the GP's attitude to the injections seems cavernous!!

  • Ye its weird how much money is pent not to just try more frequent (cheap) B12 injections. Still it is good to have lots of investigations just to make sure no other big issues are playing a part. Hope all goes well for you! Marre.

  • UPDATE.... Now officially lost.. Directions to normality would be appreciated!!!

    Well... I should be more careful for what I wish for!!

    After a lot of too-ing and fro-ing with the medics at my surgery, my GP said based on my "ongoing" symptoms I could have a B12 injection early on the understanding I would have a blood test first! I conceded and low and behold my results came in and it was to within normal levels (I am now self medicating with B12 Patches and they are easy to get hold of, cheap and extremely effective!) HOWEVER in my GP words he said "yep your B12 is much better and within normal range, BUT your thyroid is packing up"! I then said would this explain why my symptoms are not improving and he said most definitely. So.... He wants to see me asap, but as I am away on holiday, I wont be seeing him until the 8th September to "discuss" what the plan is from here. Now I am officially lost!!

  • Its only good you have had further tests and some other problem (Thyroid) has been found, it can only mean that with the right treatment you will eventually be on the road of recovery! Marre.

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