Weeping with Relief: I had my first B1... - Pernicious Anaemi...

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Weeping with Relief

Gravata_Bblu profile image
14 Replies

I had my first B12 injection yesterday morning. This morning was the first time in almost 3 years where I managed to get out of bed without chronic pain and numbness. I actually burst into tears with relief.

Sadly, my GP has agreed to let me have only this one single dose of B12 because he still believes that I am making it all up. My B12 level is 178.

BUT... today, will be a good day and wanted to say thank you everyone for all your kind support.

xxG

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Gravata_Bblu profile image
Gravata_Bblu
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14 Replies
Lisahelen profile image
Lisahelen

That is really sad, my level was 179 and my gp agreed to four shots but ive actually managed to get seven in four weeks. Other posters on here will tell you that the guidelines are for at least six as a bare minimum.

Secondchance profile image
Secondchance

My level was about 180 and my GP was not going to treat at all. I persisted, showed the BNF guidelines. BCSH guidelines were not out then, but use those too. They state if you have a symptom response then continue! Go back to GP with someone to back you up. This is your health. Be proactive! It will be hard but worth it. I am not usually very assertive. I was extremely assertive with my GP. I had researched well. It was very clear I knew more about B12 than them. I told them it was my health and I was not taking any risks with it. The risks of not treating are great. The risks of treating are minimal if anything. I have not looked back. Go for it!

leahcim profile image
leahcim

thats epic! im super happy for you, i just got my results back with 166 pmol/l so i think ur similar to me, and my symptoms are endless so im so happy for you!. keep pushing and say how much you improved, even offer to pay for it to show how serious and dedicated you are, as there super cheap i believe? i prey you start getting rej inj and then maybe move onto methyl b12 lozenges or something like that :)

Hypopotamus profile image
Hypopotamus

I was given a single shot as a trial last year, with similar results to you, and then promptly told that it was a placebo effect. No matter what paperwork I handed to the doctor, he wouldn't budge, and offered me anti-depressants instead.

In the end, I recently started self-injecting, and now enjoy the improvement each day.

Gravata_Bblu profile image
Gravata_Bblu in reply toHypopotamus

Thanks you guys!

I have repeatedly given my GP copies of the BCSH guidelines. He's a proper oldschool git and so he has taken personal and professional offense at the fact that I am questioning his expertise and/or offering him information. So it's a bit of a standoff at the moment.

My GP is a bit of a fibber as well. He promised me a course of 5 or 6 shots. When I showed up for the first, I was told only one shot was authorized.

He also told me he had tested my thyroid... turns out he didn't. I had my own test done privately... turns out my thyroid antibodies are sky high.

In my humble opinion, this doctor should not be allowed to practice medicine.

Hypopotamus profile image
Hypopotamus in reply toGravata_Bblu

It borders on criminal doesn't it. It's the attitude that it is a free service, so we don't have the right to expect to be treated properly.

Gravata_Bblu profile image
Gravata_Bblu in reply toHypopotamus

Thanks Hypo!

My other half is ex special forces. He is one of those "alpha males" so he is very assertive. I took him with me the last time I went to the doctor and my partner wasn't taking any prisoners. I think my GP actually wet himself a little bit.

I don't agree with bully tactics, but at least we got him to agree to the shots... although the b*stard obviously changed his mind afterwards.

I will keep fighting, thanks you guys. I am going to see someone privately next week. Failing that, I think I'm going to follow your route and start self treating. It would have been nice to have a diagnosis though.

Sleepybunny profile image
Sleepybunny in reply toGravata_Bblu

I wish I had someone like that to take with me. pleased you have someone supportive.

Marz profile image
Marz in reply toGravata_Bblu

Hi GB - sorry to hear of the shoddy treatment of your B12 deficiency. It seems that both the thyroid and B12 come in for the same lack of knowledge from the medical profession - sadly. So how is your inadequate GP treating your thyroid ? Raised anti-bodies indicates you have Hashimotos - me too ! Low B12 and Hashimotos do go hand in hand. Maybe there are some other tests you need..... Do have your thyroid results ?

When having B12 shots you will also need a GOOD B Complex containing either Methylfolate of folic Acid to keep all the B's in balance . Folic Acid works with the B12 in the body - just holding it a little longer. Am sure you have seen the link below - am posting it just in case :-)

b12deficiency.info/what-is-...

The first line of the above link should be enough to awaken everyone - including your GP. I live in Crete and am able to buy the B12 phials and needles over the counter for around 3 euro for three. I have weekly injections. Perhaps you have a friend who could do them for you - and buy your own on-line. Just a thought.

Also point out to your GP that only 20% of your result is available to be utilised at a cellular level where it is needed. This is due to some being bound and some unbound ! Mentioned on the above website I believe.

Do hope you soon feel better.... keep fighting :-)

Gravata_Bblu profile image
Gravata_Bblu in reply toMarz

Thanks Marz!

I honestly don't know what to believe anymore. My GP basically told me I am a hypochondriac and a malingerer who spends all her time online looking up symptoms on the internet to annoy him with. He has more or less threatened to have me sectioned if I don't stop my "nonsense".

My GP's thyroid knowledge is: Your TSH is normal, so your thyroid is fine. End of. Complete nightmare!

Marz profile image
Marz in reply toGravata_Bblu

I am so sorry you are having a hard time - however you know from reading other posts here that you are indeed in need of B12 treatment.

Also what treatment are you having for your Thyroid Anti-bodies ? May I suggest you have some private tests done through Thyroid UK....

thyroiduk.org.uk/tuk/testin...

There are several different packages.

Also I would contact Martyn Hooper of the PAS - he is the Chairman and the phones are manned to give advice and assistance. If you have been able to look at the website I posted early about B12D - then there is even a letter you can send to your GP. All these little things will give you support and make you feel you are doing something positive.

Check out Gambit - SleepyBunny and Polaris - all are excellent contributors to this forum with so much information.

What sort of Doc are you seeing privately ? There is a list of Docs available from Thyroid UK that are good at looking at the whole body....

Gravata_Bblu profile image
Gravata_Bblu in reply toMarz

I've been on ThyroidUK and I've sent my GP the information - he doesn't want to know. He has said that he'll refer me to an endo, but whether that actually will happen or when is anyone's guess.

I've been in touch with the PAS as well. Unfortunately there is nothing they can do unless I have a proper diagnosis, so I am on my own and in limbo until I have a formal diagnosis.

I'm seeing a general physician. I have asked for one who knows about thyroids and B12, so fingers crossed.

Marz profile image
Marz in reply toGravata_Bblu

....really hope all goes well for you..... :-)

Catherine50 profile image
Catherine50

Glad you are feeling better today. One injection isn't going to be any good for you. I'm very sorry on your GP service. It's terrible what some are like.

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