I suffer from terrible headaches ( they started Monday) and I cant sleep ot function because of it. My head seems so heavy as if its full of lead, also my head hurts when I move my eyes.
3 years ago I was diagnosed with PA , received injections every 3months for a while, then I convinced my Gp I need them monthly, and now I have a new GP ( my old one left the practice) and after testing my b12 levels which were 1200 , he said he will only give me injections every 6months!!
As my storage if b12 is lowering I have a range of symptoms coming back, like anxiety, difficulty falling asleep and waking up knackered..and now this headache which won't go away!
Thank you for reading...
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Gumball77
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If you can’t get your doctor to reinstate the frequency of your injections , and you would consider self-injecting, please read my post of yesterday and 16 postings ago,under the heading” B12 and Crohns “ posted by Jamlady . There I write how to obtain all you need for self injection . Best wishes
Help for U.K. Pernicious Anaemia patients and others wanting to self-inject
B12 ( Hydroxocobalamin) ampoules can be obtained from some German online pharmacies . These pharmacies are strictly controlled by the German Health authorities.No prescription needed in Germany . Many members of this forum use these pharmacies , and they are very reliable .
Search for Rotexmedica vitaminB12 depot . Don’t forget “depot” because otherwise you could accidentally order B12 Cynocobalamin which Rotexmedica also produce. Cynocobalamin would work for you , but the NHS uses Hydroxocobalamin. Cyno is cheaper . These ampoules are 1mg x 1ml
bodfeld-apotheke.de. ( In German, but can be obtained in English from a drop-down list in the top right hand corner of the site )
versandapo.de ( In German only ,so you might need a translation app , or use Google Chrome )
These pharmacies use a courier to deliver , taking about 4-5 days . At the moment it costs €9,89 , no matter how many you order ( I order 100 at a time , and they have a use-by date of 2 1/2 years hence ) You can pay with PayPal , a card or Amazonpay .
I have registered with the above pharmacies . It makes it so much easier when you re-order .
amazon.de ( German Amazon, available in English ) The disadvantage here is that the several pharmacies who sell b12 ampoules through amazon.de , do not all deliver to the U.K. You need to trawl through till you find one that does . Some times the first one to appear will send to UK .
Needles, syringes , swabs and sharps disposal boxes can be obtained from medisave.co.uk . Always buy 100 of every item ( no, not the disposal boxes!)
I buy long withdrawing needles 21G x1 1/2 inches, because the extraction process blunts the needle on the glass ampoule .( ouch!)
I use a 25 G x 1 inch injecting needle .
Open the ampoule using the swab to avoid nasty cuts .The weakest place on the ampoule is marked with a spot on the neck.
If you have trouble with this, a device ,an ampoule opener , about £3.00, obtainable from amazon.co.uk
I use a 2 ml syringe although the ampoule is 1ml , to make sure I get every last precious drop of B12 , I pull out the plunger , and inject the air SLOWLY into the ampoule . Then when the plunger is pulled out for the second time, every last drop of B12 is in the syringe . Then put on the injection needle , and expel the air until a tiny droplet of B12 appears on the end of the needle . Now you are ready to inject into the middle outside third of your thigh ( vastus lateralis muscle ) , which is where the muscle is nearest the surface . If you are needle phobic there is help in the shape of a device called an auto-injector . Available from a Danish company unionmedico.com costing about £100.00. I don’t use one, but I’ve heard good reports .
You can find videos demonstrating Intra -muscular injections . You can also inject sub-cutaneously , but I know nothing about this method .
If you are injecting B12 for the first time, you should have someone nearby, in case of anaphylactic shock . This is a very rare reaction , but I feel obliged to tell you . Do not worry about overdosing on B12– it’s water-soluble . It is not possible . That’s a proven fact
I have been self-injecting for 4years now , and I don’t turn a hair . But I cannot tell you how nervous I was the first time . I was shaking like a leaf .🌿. But it has changed my life. Best of luck 🍀, and very best wishes .
P.S. I hope that I’ve not omitted something important .
Mouth ulcers can be a B12 deficiency symptom; can be due to other causes as well.
Have you seen your dentist recently?
They might be a useful ally if they see your mouth sores and you mention that your B12 injections have been restricted to 2 a year. They might even write to your GP if they can see evidence of B12 deficiency in your mouth.
Might be worth mentioning that your B12 jabs have been restricted to other health professionals you see eg optometrist (eye tests), audiologist (hearing ), podiatrist (footcare)...podiatrists are trained to look out for neuropathy in feet eg tingling, pins and needles, numbness etc.
Have you spoken to PAS directly? You mentioned you were a member in a previous thread.
PAS can sometimes intervene on behalf of their members. I am sure Martyn Hooper, the chair of PAS would be interested in hearing from someone whose injections have been reduced to 2 a year.
Blog post about how PAS supported someone who was on one injection a year.
2)They give you time to think about what to say to GP
3) If GP gets a letter before next appointment it gives them time to think and to do their own research.
4) In UK, letters to GP are supposed to be filed with patient's medical records so hopefully less likely to be ignored than info passed on verbally or on photocopies.
If you send a letter I suggest including a request to place a copy with medical notes.
Always keep a copy of any letters sent.
5) Letters create a paper trail which can be useful if there is a need for a formal complaint in the future.
6) Letters could contain symptoms list, diagnoses, test results, personal and family medical history, extracts from B12 documents/articles, requests for referrals.
Is your GP aware of the potentially severe consequences of under treatment of B12 deficiency?
Might be worth drawing their attention to the risk of SACD, sub acute combined degeneration of the spinal cord , in people with untreated or under treated B12 deficiency.
Some parts of UK are using local area guidelines on B12 deficiency treatment/diagnosis that are years out of date. I suggest you track down a copy of the local NHS guidelines for your part of UK and compare them with national guidelines/documents eg BSH, BNF, NICE CKS.
I am not aware of any local UK B12 deficiency guidelines that suggest restricting a patient with confirmed PA to 2 injections a year.
If I was in a similar situation I would ask GP practice for a copy of the guidelines on treating B12 deficiency they are using although this could irritate them.
I believe you can submit a Freedom of Information request to GP surgery/practice manager asking for a copy of the guidelines although they may well be irritated by a FOI request.
Have you noticed any deterioration in other symptoms since your jabs were reduced or new symptoms appearing especially changes in neuro symptoms?
Are you keeping a symptoms diary with a daily record of your symptoms and dates when you receive treatment. This could be useful evidence of further deterioration.
Referrals
If you are developing new neuro symptoms or those you have are deteriorating I suggest asking for a referral to
1) a neurologist
2) a haematologist
Seeing a specialist is no guarantee of seeing someone who understands PA and B12 deficiency and its neuro effects.
Probably good idea to put request in writing and make sure you let any specialist know you are only getting two jabs a year.
Stubborn GPs
Sometimes it is hard to keep challenging a stubborn GP and some on forum resort to self treatment.
Have you got someone who will come with you to GP appointments? Even better if they have read about PA and B12 deficiency and can back you up.
I am sure PAS could suggest useful info to pass to your GP so please think about ringing them and leaving a message on their answerphone. PAS office is open most Saturday mornings and some other mornings.
Sounds as if your GP is unaware of guidelines! Only 30 % if a standard 1000 mcg injection is retained, giving you less than 2 mcg a day on average over 180 days. That is less than the daily recommended intake of 2.4 mcg. People with PA need even more than that. They lose more b12 because reabsorption from bile also depends on IF (intrinsic factor).
The way I see it your GP has no right to reduce it to six monthly. It's normal that serum values get high from injections. The recommendations even say that there's no point in testing serum b12 after injections have started!
I don't understand why GPs should want to make their patients suffer by refusing proper treatment when b12 is both cheap and safe.
Perhaps you could ask him what guidelines he's following.
It's vital to keep up with your injections, I've been having various conversations with wedgewood just over the last couple of hours, and you can end up with numerous other symptoms, we are a 'forgotten' community especially as far as I'm concerned by the doctors, I honestly don't understand why you are being cut down to a six monthly cycle, it makes no sense, you could end up with more problems, readings from previous blood tests can be within range once you have been on a course of injections so these can soon start to drop eventually, don't be fobbed off, its becoming a roulette wheel, and its your health! Ask more pressing questions, or speak to the practice manager, this does not sound right, good luck.
I also suffer with debilitating headaches. Had 2 migraine sort tbus week as I think they are as so noise and light sensitive before and woke in severe pain 0430.
Sounds absolutely ridiculous what the Gp has done.
Are tours mogtsins that gi on fod days or the chronic tension sort?
If monthly worked at keeping your symptoms at bay get back to that as soon as possible
I find any 'relapse ' takes weeks to get a big more symptom free.
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