Injections stopped.

[3rdNettydoon]

I was noticeably improved feeling good, after 21 weeks of EOD SI. Then I had antibiotics for a water infection, Nitrofurantoin.By day 3 of antibiotics I began to feel off. Mouth coated with something, (thrush) eyes not good, headaches, nervous, limping a bit, hot spark-like tingling, tired on waking. Lots of the improved symptoms returned with vengeance. I posted here and found others had reacted similarly and worse to Nitrofurantoin.

Dr didn't acknowledge this could be due to Nitrofurantoin. Asked to do a B12 blood test. I tried explaining that it could result in a very high reading since I was SI EOD, that I was concerned my 8 weekly injection at the surgery might be stopped.

She promised this would not happen so I agreed to have the blood test.

Dr asked me to go back the following Monday, first appointment so she could discuss the tests with me.

That was Monday 31st July. During the appointment she did not look at me.

She was quite stern as she told me about the very dangerous level of B12. That this may mask other illnesses in me. I am aware that other things can happen beside B12d. I am as vigilant as the next person. Since diagnosis of B12d 5 years ago I have asked for bowel tests, clear. Had full examination where my cancer was years ago. Very clean. Had advice on antidepressants. Various visits to ask about different things.

But I was to stop SI or my surgery injection would be stopped. What did I want to do? No discussion.

I said I cannot cope on 8 weekly injection. I need to keep going as per guidelines. It was working out great for me with reduction of symptoms.

All of this took place without a kind look my way. This was very upsetting. I tried to ask about treatment to prevent ITUs. She flicked her hand to stop me. Said let's get this appointment over with.

I persisted to ask if she could at least test the urine sample I had brought to ensure the infection was gone. This she did without looking my way. Even when she told me it was fine.

I asked if someone had told her I was a nervous/difficult patient, or indeed warned her I went on about B12d. She denied this.

I'm pleased to say that I am improving from the antibiotic reaction. Still not 100% but I am getting there.

Previous appointments with this Dr gave me a great respect and belief in her. She was lovely and caring. My trust is badly dented.

What happened?

Something did.

[jade_s]

Oh 3rdNettydoon, I am so so SO sorry 😥💔 I had a similar experience with my very trusted, kind, and helpful GP of 6 years. When I went in asking for further testing for B12 (even though serum levels were high yet both arms were numb), she flipped and started yelling at me 'did I go to medical school for 7 years'.

I really don't know what it is about B12 that makes them flip / freak out that like. I wish I had answers for you. Perhaps it is that we don't "listen" to them , and that hurts their ego's.

In your doc's case, it almost sounds like she was ashamed - if she couldn't even make eye contact. If she is in a group practice, perhaps the practice manager dressed her down and she passed it down to you. It's awful to be treated that like. I'm sorry.

Glad to hear you're getting better x

[Nackapan in reply to jade_s]

Yrs peer pressure with colleagues and disbelief through lack of knowledge b12 needed more frequently than 2- 3 monthly .I agree no eye contact = shame or embarrassed

[3rdNettydoon in reply to jade_s]

ThanksThanks jade. ImnowI'm now inwondering whatwhat illnessesmight thethe B12B12 Injections be hiding

[3rdNettydoon in reply to 3rdNettydoon]

SorryverySorryvery nervous nowaboutnow about this

[jade_s in reply to 3rdNettydoon]

I'm sorry your doctor made you nervous and doubt yourself! They should be there to help us, not send us off on wild goose chases!

A blood test looking at liver, kidney, pancreas, other ezymes, and full blood count should reveal anything out of place.

What about all the people taking b12 tablets - same issue there yet i'm sure the doc would have no problem if you took a 1000mcg supplement every day. There are no warnings on b12 bottles "do not supplement because it can mask cancer".

I would not worry about if i were you. Her job was to scare you silly into stopping injections, don't let her send you back into illness by stopping injections. Xx

[jade_s in reply to 3rdNettydoon]

Hmmm good question! In some people, certain cancers can cause high b12 naturally , but even monthly or 3 monthly injections can keep levels high enough to 'mask' that. Plus aren't we in 2023 and they have other technologies to find and diagnose other diseases 🙄 this is a b.s. cover-your-a** excuse. I will link the paper.

I can't think of anything else high b12 would 'mask'!

[jade_s in reply to jade_s]

academic.oup.com/qjmed/arti...

[3rdNettydoon in reply to jade_s]

Thank you.

[WiscGuy in reply to jade_s]

Besides, high B12 can't mask anything if they never check B12, and most doctors don't, and resist if they are asked, it seems.

[jade_s in reply to WiscGuy]

Exactly 👍

[palmier]

Weird, isn't it. When doctors evaluate patients they treat lack of eye contact as a psychiatric symptom. But when it's the other way round...

[Nackapan]

Pressure from partners in the surgery .That's what happened .

Mine b12 injections have been threatened many many times.

One Gp in my last practice ( closed now)

Carried on prescribing 2 weekly.

She is the only one that would .

If another Gp on duty it would not be issued until 'actioned ' by her

Either lie saying you will stop self injecting or take up the fight.

It's a bad state of affairs .

3 years in as originally IFAb test not done a letter appeared.

With a blood form for b12 levels and ifab .

It was honest saying if levels high .

( they are!)

If ifab negative injections would stop.

So wrong!!

Had to have a a phone consult booked .

Didn't have the blood test .

I'm so sorry this Gp has no gumption to keep to her word.

[Technoid]

What a horrid experience 😔. I recently saw a good interview regarding antibiotics:

m.youtube.com/watch?v=SzqsM...(Not working as expected?)

[Jo55]

perhaps it’s the weather/time of year. I went yesterday to see if I could have ten weekly, I stopped doing my injections when I changed doctors as I didn’t want to mess up with the one I’m now with as he’s good in most areas. Saw a locum who told me I feel awful because my levels are too high to go through hell with withdrawal symptoms for a few weeks till they come back down then I’ll feel as right as rain when they are within range 🤬. My levels are high cause I use nasal drops which were taking the edge off but not now, so I’d just carry on injecting and tell them you’ve changed to nasal drops and see what they say. I have an empty container I can send you if you are in the Uk which if questioned you can show them

[3rdNettydoon in reply to Jo55]

Thank you. I am smiling at this post. Where do you get the nasal drops please? They might help me to pick up more quickly.

[Jo55 in reply to 3rdNettydoon]

Hi. I get my nasal drops from the Netherlands- my daughter brings them when she visits - but you can get Methyl from Your Health Basket but not cheap. They sort of take the edge off but that’s about it. I suspect they raise your levels the same as if you were injecting

[MrsTuft]

Nirtrofuratonin deactives B12. If you read the leaflet it advises caution for those with B12D. GP’s often don’t accept this nor B12D! You’ll have to quietly keep treating yourself self. And ask for a different antibiotics next time. If UTI’s persist you may need local oestrogen.

[3rdNettydoon in reply to MrsTuft]

The leaflet even says that Nitrofurantoin can cause 'altered sense of feeling like pins and needles.' Not many of us B12ders need an increase in this.

[MrsTuft in reply to 3rdNettydoon]

Yes and yet they don’t accept it! I think fear of litigation.

[Gen89]

hi, my doctor won’t give me nitrofurantoin for a uti because I already have neuropathy and it can cause this. Maybe your dr was embarrassed because she knew she shouldn’t really have prescribed it to you. Hope you feel better soon.

[SeaglassMenagerie87]

Nitrofurantoin should never be prescribed to anyone with a b12 deficiency. It even says this on the NHS website.

[Bellabab]

Its clear to me that the NHS central control unit has told GPs to take a strong line against us - why they have done so is beyond me. There is no evidence that I can find which shows any danger to those of us who have B12 absorption problems. Indeed the evidence is quite the opposite. Lets hope the new guidlines will change things.

[KBird01]

I'm so sorry to hear this 3rdNettydoon .

I agree with Bellabab that I think there have possibly recently been directives/advice published from either care trusts or perhaps medical journals about the proliferation of people self treating with B12.

I was fortunate the nurse practitioner at my GP said whilst she accepted my high levels wouldn't cause an 'overdose', I had too much B12 in my system and should stop supplementing. (I daren't even tell her I was SI-ing!)

There are lots more B12 groups now encouraging people to SI, so it seems an automatic adversarial stance has been taken. Probably to do with budgets and their concerns about treating high numbers of people.

Perhaps it's time to take someone else along with you. I ended up taking my husband. He's a builder, I'm an ex-nurse, but at least they were more respectful when he was there! 😡

[MrJustatip]

Hello, 3rdNettydoon. Sorry to hear your story. Doctors are (please excuse the language) Big Pharma's bitches. They only care about your symptoms if they can write you a script for some evil drug with bizarre side effects. Last week I was diagnosed with Pernicious Anemia. The doctor I saw was a highly recommended hematologist and he said he would order an Intrinsic Factor Test but it will only be a waste of time and would be shocked if I was positive because I appeared too healthy". I won't mention all the ridiculous comments and his dismissive attitude (I recently posted my new diagnosis on here), except that he told my wife I was a hypochondriac. Was he shocked that my results came back as positive? We don't know as he sent his Physician Assistant in to deliver the news to me that I had Pernicious Anemia. She was wearing one of those old plague masks while telling me the "good" news while I began crying right in front of her. Good luck to you and research, research, research for your self. MrJustatip