Symptoms returning. What's next?

[KCxo]

I have talked about some of this in previous posts, but I figured I'd make a new one since I've been noticing new symptoms.

Basically, I had a blood test taken in December after feeling tired all the time and my GP said that my B12 and folate were low and that I should get injections. I had my initial loading dose (3x a week for 2 weeks) in the weeks leading up to Christmas and had a blood test taken just over 2 weeks later. I went back to my GP for the results and she said my levels had fallen to 93 which meant more injections.

I had my second loading dose the first 2 weeks in February and am now cut down to 1 injection per week for the next 4 weeks. It's been 6 days since my last injection and my exhaustion has returned, dizziness, weakness in arms, brain fog, tingling in back/tongue/scalp, numbness in left pinky finger and left pinky toe. After doing some more reading online and writing down notes, I noticed that I used to get heart palpitations and my hands and feet would always be cold, but during my loading dose period, they weren't an issue. But now, I'm noticing these symptoms are returning and am wondering if these are linked to B12 deficiency?

My 1st weekly injection is scheduled for tomorrow so hopefully it'll help, but I don't want to feel like this 4/5 days out of the week, stuck in the house with zero energy, waiting for my next appointment to come around. I dread to think what it'll be like after these 4 weeks are up and they cut me down to 1 every 3 months.

Any advice on what to do?

[deniseinmilden]

I found the same thing last year and you can read through my previous posts for more details.

I also got worse every time that I didn't have the jabs when I needed them, despite taking very high levels of additional sublingual B12, and now need to self inject 1.5ml hydroxocobalamin every day (which I have to buy for myself). I take supporting supplements of a good multivitamin and mineral supplement plus extra folate (as folic acid) and potassium.

I suggest you ask for more tests to check other things, including thyroid tests which others here will advise you on.

The BCSH guidelines state you should be treated every other day until all symptoms resolve. I read this as this should be reinstated if your symptoms return, however it's hard to persuade Drs to see it this way.

There are lots of people who self inject at least every day. I have got lots of extra information on this from the Facebook closed group

https/facebook.com/groups/PAB12DS...

I'm sorry that you are experiencing this as I'm sure, like me, you thought all your problems would be over once you had your first loading doses.

I don't know why this happens to some of us but believe it could be because of something called functional B12 deficiency. I haven't found anything that really explains how or why this happens and also would like to know more.

While my Dr initially allowed me daily jabs the surgery suddenly reduced them to one per month without telling me first so I suggest you find a backup solution to keep yourself covered in case. It might not come to it but it's reassuring to know your life is not at their mercy.

Don't worry if you do have to do jabs - they are quite easy and by far the worst bit for everyone is the idea of doing it!

To give it some perspective, I don't get my monthly jab from the surgery because it isn't worth the hassle and I know the nurse jabs are worse than my DIY ones!

Good luck and keep in touch!

[sami0x in reply to deniseinmilden]

Hi, can I ask what level your B12 was?? Mine was 148, I had loading doses which finished a month ago, I then ordered hydroxocobalamin online and self injected twice this week but still feel shattered I don't know if this means I should inject more but I don't want to overdo it

[deniseinmilden in reply to sami0x]

Hi,

Sorry, I missed your post before. I had several tests before I could persuade them to do trial loading doses. My levels were around 150 - 160 though I feel this is largely irrelevant as I had lots of neurological symptoms and according to the BCSH guidelines, this is what they should have gone by and should have treated me lots of years earlier!

You say your folate is low too. You will need to supplement this at a high level - 5 mg / day.

Superbly well done on the SI. You might need to do even more jabs. While the BCSH guidelines state you should be treated every other day until all symptoms resolve, some people, like me, need daily jabs.

Try more meds and see if it helps. At least B12 and B9 are safer than others so you can try high levels without a problem.

Let us know how you get on and come back with more questions as they arise.

Good luck! x

[Sleepybunny]

"dizziness, weakness in arms, brain fog, tingling in back/tongue/scalp, numbness in left pinky finger and left pinky toe. "

"I dread to think what it'll be like after these 4 weeks are up and they cut me down to 1 every 3 months."

pernicious-anaemia-society....

See Symptoms Checklist. I ticked all my symptoms and gave a copy to GP.

b12deficiency.info/signs-an...

If you have B12 deficiency with neurological symptoms, (the symptoms you mentioned are usually considered to be neuro symptoms) then as Denise said the BCSH Cobalamin Guidelines recommend loading doses every 2 days until symptoms stop getting better. In effect this could mean loading doses over a period of weeks even months as long as you continue to improve. The BCSH cobalamin guidelines mention a review after 3 weeks of loading doses in the case of someone with B12 defic with neuro symptoms.

Details of treatment are also in the BNF (British National Formulary) Chapter 9 section 1.2 a copy of which is likely to be on the GPs bookshelf. I believe they may also be in NICE guidelines as well.

Link below has similar info to BNF in Management section.

patient.info/doctor/pernici...

Inadequate or delayed treatment of B12 deficiency could result in permanent neurological damage.

I gave my GP a copy of page 29 from the BCSH Cobalamin Guidelines. it has guidance on treatment and diagnosis for those with and without neuro symptoms. I also gave them a copy of the whole BCSH Cobalamin document

Link below gives step by step guide on what to do about B12 deficiency

b12deficiency.info/what-to-...

Point 6 may be relevant

[KCxo in reply to Sleepybunny]

Thank you, the link was very helpful. I didn't know that so many of the things I experience could (probably are) related to my B12 deficiency.

[Jonan71 in reply to Sleepybunny]

Hi sleepbunny,

I have been diagnosed with B12 and Folate deficiency and had six loading doses. The GP said then one every three months according to the BNF . two weeks after the loading doses my symptoms came back so I asked if I could have more and he said no but he would give it two monthly. He will not test till another month. I don't know what to do? Do I wait with nothing so my bloods are honest or do I self medicate and be a false reading? Oh and today found out my D vit is low too. I don't think I am absorbing vitamins as it sounds like I have low stomach acid. I am wondering what else is low. Not sure I can go another month in pain and no sleep. Can you offer any advice?

[deniseinmilden in reply to Jonan71]

Hi,

Sorry, I missed your post before. I suggest you try going back to your Dr armed with a plan and copies of the information, especially BCSH guidelines, that Sleepybunny has posted. Look through past posts and other replies on here by people such as Gambit, Polaris, Marz, fbirder, clivealive and other regulars.

I suggest you push for treatment ASAP as your body is sustaining damage if it gets too low in vitamins and this can be permanent if allowed to continue for too long. Reality is that the Dr's are unlikely to treat you properly and you may well have to take it into your own hands.

I am self employed so can't afford to be too ill so have done everything I can to get what my body needs. I'm still not very good at balancing everything though!

Good luck!