Need some help please

[christina1952]

Hi all - been writing on here for several months now about my husband. He was diagnosed as B12 deficient after feeling very unwell, was called in for injections and felt so much better. However, he went to see his doctor last week and she said his blood was now fine and she did not need to see him again. The last jab he had was in June and for the last month he has been rapidly going downhill again. He feels now that she thinks he is wasting her time as she said his symptoms must be due to something else, but she offered no help at all for his depression, anxiety and panic attacks as well as his brain fog. I'm angry, he is ill and others have noticed as well. I've made an appointment for next week to see her but in the meantime I got some Jarrows Methyl B 12 5000 mcgs try and help him feel better. He has only had one for 2 days running and said he felt much better up until around 4 in the afternoon.

Will this dose do him any harm, and can he increase it if necessary. Am asking as I'm scared that he may get too much. I have written a letter and will take to the surgery before I go so I don't forget anything. I have no idea why she has stopped his treatment or what she is thinking. I'm extremely p-----d off that even if she thinks it's something else she offered him no help at all. He is never ill and has hardly ever been to the doctors in his life, so I know that he's feeling like crap but because of her lack of response, she has made him feel he's not worth it. I know he needs help and I'm going to do my best to see he gets it. From all I've learned she is not following any guidelines at all by stopping his treatment altogether. If anyone could let me know if I can increase the Methyl safely can you let me know

Thanks all so much

[fbirder]

Read Martyn Hooper's latest blog post - martynhooper.com/2016/09/23... - it's all about how the PAS can help people who have idiot doctors (really, would they tell a heart patient that they didn't need their pacemaker anymore because their heart seems to be working OK now?).

The supplements won't do any harm, but they won't be as good as the proper treatment - injections.

[ndodge in reply to fbirder]

Hi Christina 1952,

I am so sorry to hear that your husband (and you) are at the mercy of yet another idiot doctor.

Can you change doctors? Sounds as if, besides being useless, she is also doing your husband harm by not giving him any more injections and by making him feel that he's not worth helping.

I am so angry on your behalf!

Testing b12 serum levels after injections is ridiculous. Can you take the guidelines to her to explain how it all works-or is supposed to work!

Lastly, your husband can take as many b12 sublingual as it takes to feel better. You cannot overdose on b12! I'm not a medic, just someone who takes anywhere from two to six lozenges a day of methyl B12 between injections. Each one is a 10,000 mcg dose (that's right, ten thousand) of methyl B12.

Wishing you and your husband the very best luck with it all!

[christina1952 in reply to ndodge]

Hi - thanks so much for your reply. I've been scared about giving him one a day in case I could do him harm. He said he definitely thinks he feels a bit better but seems to wear off during the day. Can I just ask you if he needs to be taking anything else with it as so confused about all the folate issues etc. I would never normally dream of going to the docs on his behalf, but because of the outcome of his last appointment and his symptoms coming back, he has lost hope. I can't believe that after being diagnosed initially and given treatment she is saying it all must be due to something else because his latest blood is fine. When he telling her how low he is feeling and that he has very dark thoughts at times, she sent him away with no help for his depression or anxiety or suggesting what the "something else" might be. He has very rarely ever gone to the GP, has never been ill. The one time he needs help he is not getting it. I know he is not well and I've seen the changes over 3 - 4 years. He has always been so full of fun and upbeat and to see him suffering especially mentally like this is killing me. If I get no luck, I'm going to ask the PAS Society if they will step in. Thank you so much!

[catherinejordan]

Has he thought about the self injecting route? I inject every other say I couldn't function and hold down a full list job otherwise.

It takes a bit of getting used to but I haven't looked back x

[ndodge]

You are so welcome! Glad I was of some help. As I said you can give him as many in a day as helps him. Maybe one in the morning and then one in the afternoon when his energy flags... or 2 in the a.m & 2 in the afternoon. He could just experiment with how much makes him feel best.

If he also took a good multi vitamin with all the B vitamins in it, then it should have folate or folic acid in it. Either one will work, they are essentially the same. Folate is what is found in food and folic acid is a synthetic but is okay to take. That's what is usually in a multi or B Complex. B9 is another name for folate/folic acid.. It is actually important to take all the b complex along with B12. So to keep it simple, a good multi vitamin or a B complex is all that's needed.

There are printouts and info on this site, Pinned posts, that you could take to your doctor. Also fbirder has some very good info that he has organized. If you can't find this information, post again to ask how to access them. I'm in the US and so have never used them.

Joining the PAS is great idea, too!

Keep us posted as to how y'all are doing!

[Sleepybunny]

Think the PAS may be able to help.

pernicious-anaemia-society....

PAS tel no (0)1656 769 717 office open from 8am till 2pm.

fbirder has a very useful summary. Link to summary in third pinned post or on his profile page. I take it with me to appts. it has quotes from b12 docuents that can help when faced with an ignorant GP in my opinion.

Link about writing to GPs. Does not seem to mention BCSH Cobalamin and Folate Guideliens which i would in any letter I wrote.

b12deficiency.info/b12-writ...

[christina1952]

Many thanks!