Hi, I was diagnosed with megaloblastic anaemia yesterday. My gp, sent over a prescription for Cyanocobalamin 1mg/1ml solution for injection ampoules. My pharmacy and other pharmacies don't stock it. I left a note for my doctor with the receptionist to ask for possibly a different brand or type. I'm new at this and I will call gp on Monday.
I have Type 1 diabetes and hypothyroidism. Last week I realised how much I was relying on my cousin with help. As a single working mom with three children, I just assumed the fatigue was because of life. Last week, I went to my gp and nearly cried because of the exhaustion. He sent me for blood test and I was diagnosed with megaloblastic anaemia yesterday. My b12 and iron are low. I was advised to buy vitamin D supplements.
If I can't get the injection the gp wrote, is there a different brand I could ask for? I live in London, UK.
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I use the pictured vitamin D drops from Amazon, I take 4 drops a day. Been listening to podcasts and I’ve tested privately and that’s about right for me. Monitor My Health is an NHS lab that tests privately.
Are you on the thyroid Uk forum on here, loads of advice there.
My ferritin was very low (I have fibroids) and I found that the best for me was Three Arrows Heme iron (all the iron supplements upset my stomach) I tried eating liver but couldn’t eat enough to get my iron up. Three Arrows works fast and I had to drop down to alternate days between bleeds to not overdo it. With iron supplements you have to be careful what you eat before/after eg tea/coffee even herbal tea stop them working for 2 hours or so. Heme iron isn’t affected by this.
The doctor over the phone did say I need to pick up the medication from the pharmacy, then make an appointment with a practice nurse, who would inject me.
She said, make an appointment for Monday, Wednesday and Friday. Until the six doses are finished. You can start it tomorrow if you can get it. So I went to different pharmacies who couldn't help. I called the first one and visited two others. I wish I had the energy to go to more, but I couldn't.
I'm definitely gonna do my best to get an appointment for Monday.
I am surprised the pharmacy did not point out that Cyano is not the normal script in the UK and I would imagine none stock Cyano. . . . . They even more than the GP should be aware of such and the second they see Cyanocobalamin they should make you and the GP aware of a potential mistake. ... . .
Thank you very much for the fast and informative response. I deeply appreciate all feedback. I'm fairly new to this gp practice and I don't know the doctor who prescribed it for me. I think it was the first time I spoke to her. She spoke politely and she sounded young over the phone. I don't believe she ment harm, maybe she was ignorant or overworked. People make mistakes.
I will try to get an appointment on Monday (hopefully I would get an appointment) and ask for the Hydroxocobalamin prescription instead. If I don't get an appointment then, I will try to contact the practice manager.
In my old gp, when NICE guidelines changed for prescribing glucose test strip for type 2 diabetic, they gave me a hard time until I spoke to the practice manager who sorted it for me. At that time I was using lots of them as I was pregnant needed more of them and they were restricting them. I remember, buying few boxes then. Hopefully, I wouldn't need to buy at least the first round of b12 injection.
Here is a screenshot of nhs app that shows the prescription
This will be a mistake. It's easily done if the gp is not familiar with prescribing b12. I worked with an amazing gp who was incredibly experienced and knowledgeable on almost everything, but didn't know cyanocobalamin and hydroxocoblamin were not the same thing. I didn't know either at the time (prediagnosis), it was my community pharmacy colleague who educated us on that occasion.As has already been suggested, just request an alternative prescription.
Your B12 is ridiculously low so no wonder you feel so awful and exhausted. 🤗🤗🤗🤗🤗 Megablastic anaemia means your blood cells are poorly formed due to deficiency of B12 (I am not a medic so this is my lay and simple way to understand MY condition which I had also).
Big hugs and believe me you are on the right path to recovery. Hang in there as you sound to have a GP who is open- minded.
Take a look at the symptoms of B12 deficiency and see if you have neurological symptoms. With that low a level of B12 and your total exhaustion would be surprised if there were not other symptoms that you didn’t register.
Be prepared that as your loading doses begin it is highly probable that you will begin to feel worse so be prepared and arrange help with the family. Pre-prepared meals, shopping delivered, washing fewer clothes etc to carve out some rest time. Your body needs rest BUT I know and understand that’s easier said than done - but it’s a must.
Secondly, your GP should prescribe a very high dose vitamin D capsule and also a high dose folic acid if needs be. You should not have to pay and potassium and an iron panel needs checking too because when you start getting enough B12 your body will try to make lots of quality blood cells. If it can do so, in about three months your megablastic blood cells should be more normal.
If you don’t keep an eye on cofactors your B12 can’t work it’s like buying lots of flour (B12) to make cakes but not matching that with the required quantities of butter, eggs or sugar. So you have lots of flour that you can do nothing with!
You don’t say if you are a vegetarian or vegan but as you appear to have other autoimmune conditions it’s possible that your B12 deficiency is autoimmune in which case you may need B12 injections for life.
Please join the PA society because it will be the best money you ever spent, you get access to knowledgeable and kind advisors by phone as well as an invaluable resource of wonderful folk on this forum. (And the thyroid forum).
Agree with others Hydroxocobalamin is the NHS injectable B12 of choice. I strongly advise you learn to self inject sun-cutaneously to manage your symptoms most effectively. The NHS generally gives the minimum treatment which is 6 loading doses followed by 1 every 12 weeks. Given you incredibly low B12 levels it is likely will need every other day for a while to enable your body to heal WHILE not resting - busy mums can’t rest so your recovery will take longer and you may need to increase the B12 intake. But don’t worry lots of advice on here as you can’t overdose on B12.
Love the cake analogy😋, I can understand that. I’ve learnt a lot on here over the last 6mths and still am. The cofactors are important, I take 5mg of folic acid as I self inject (SI) every other day (EOD) plus I take B6 (another cof)in a vitamin B multi vitamin. They have certainly helped me as I only started them recently. Just to encourage you on the potential of getting worse once you start the loading dose, Wwwdot is correct as it’s a possibility but during mine I started to feel improvement after the 4th injection. All the best for your recovery.
Hi All,Thank you for the support and advice. My iron was low and the doctor did prescribe it for me. With the vitamin D, the doctor sent me a message yesterday (before i went in search for the b12 injection) that I will try to follow.
"Your blood tests show your vitamin D level is slightly reduced. This does not require a prescription but I recommend that you start over-the-counter vitamin D tablets at a daily dose of 25mcg (also labelled as 1000iu). You can buy these from your local pharmacy."
I used to take the high dose folic acid before and during pregnancy. I will see if the pharmacy would let me buy that dose.
With the possibility of feeling worse before I feel better. How long does that last on average? Easter holiday is coming up and I have booked annual leave, I was planning on spending it with the children. I hope not to need to extend the leave as I have already taken sick leave just before the annual leave started. This week I used up some time in lieu I had.
Wait to supplement folic acid/folate until you are on the b12 shots. Also, I just want to note that some feel adverse effects of such a high level of folic acid noted above.
Also, do not become alarmed if the feeling worse before better includes new symptoms of b12 deficiency during loading doses or beyond.
Thank you for the advice. I used to take the high dose folic acid before and during pregnancy because that is what my doctor gave me when I told them I was ready to try for a baby. It didn't make me feel ill then, in fact it made me feel great and it had a wonderful side effect on my hair.
I will wait and take only what the doctor gives first to establish if I experience any side effect, it would be easier to tell what the cause is.
Sorry to hear of your troubles. Debilitating fatigue is so difficult to deal with. When mine was so bad I just felt worthless. Don't despair, it will get better.
I am in the USA and cyanocobalamin is the most commonly prescribed form of injectable B12 by far. And there is also a worldwide shortage of hydroxocobabamin and the NHS may have limited suppliers they can order from. I currently inject twice a day and use both forms, cyano in the mornings and hydroxo in the evenings. This helps stretch my hydroxo supply that I get from Germany while waiting for it to become more available again. Cyano is certainly better than nothing and many people, even in the UK use it with good results.
I also use the K2+D3 shown by Regenallotment, considered more effective and safer than D3 alone if used for extended periods. Good luck. the road to recovery can be long and frustrating, but you can get there.
Getting injections every other day would be wise until the symptoms go away. It is safer to have the first shot in a doctors office. There is a rare chance of having an allergic reaction.
As you’re still feeling under the weather perhaps consider continuing your sick leave rather than using your annual leave and time in lieu. You shouldn’t have to use annual leave when you’re sick. I’m sure your GP would be happy to extend your sick leave under the circumstances. I hope you feel better soon
I'm still waiting for a reply from the gp. I sent my request through the Dr IQ app. I got a message this morning saying my request has been passed to a clinician for a review, please allow 48hr for the process to be completed.
The receptionist can't make appointments with doctors (only with pharmacist and nurses), so most of us use the app.
Hi, I got my first injection yesterday. The doctor called me in the morning and she sent over a new prescription. I got an appointment with the nurse for 5pm. Where she saw that it said one injection every three months. I told her the doctor over the phone said I would get 6 injection first, every other day.
The nurse said that is not what the prescription says. She said she will chase it up for me. She sent an email to the prescribing doctor while I was there. She gave me the first injection and then said she will call me today or tomorrow for an update. She said she can't give me what I wasn't prescribed. But she will chase it up for me, as getting clarification and advocacy is something she can do.
Another thing that raised my eyebrows, the doctor wrote I got b12 deficiency because of bariatric surgery. The only surgery I ever had was c-section.
This afternoon, the nurse called and informed me that my prescription was changed to every other day for two weeks. She also asked why I received 5 instead 6 and now an extra one has been sent to my pharmacy.
The one injection, every three months might start after being reviewed by the doctor, after 6 weeks. Depending on the outcome of the consultation that day.
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