Do doctors believe us?

[shaunbaxter82]

I’m a male 64, Diagnosed at 60 with PA. Earning a good living as a HGV tramper(sleeping in your truck) Could not understand why I was so shattered, I was used to working 15 hours a day, poor diet, poor sleep pattern etc. When I was diagnosed it was a relief. But I couldn’t carry on driving 44 ton vehicles, although there’s no law says I can’t. But my concentration levels are greatly reduced, the nerves under my feet are painful and all the other complications that only other sufferers recognise. So why am I made to feel like a hypochondriac, why did I have to fight to receive my injections every two months instead of three. Even that is too long. Doctors advice, exercise more etc etc. But how can you exercise more if you’re feeling shattered most of the time. And during covid, the letter from the NHS telling us that we don’t need any injections as we’ve enough in our system to last 12 months. Try explaining that to all of us hypochondriacs. I’m going to start self injecting, have no faith in the system.

[Michael-MGP]

Hello Shaun,I had a similar experience.

But I had a lot of Cognitive problems - I left lights on, forgot where I was, didn't know where I was. It was really scary.

I think like you, I have been left with Nerve Damage - mainly the soles of my feet. It feels like I walk on glass.

I went to my GP in April and told him I thought I had B12-D.

He tested my blood and it was low.

He left me until 23/12/2019 untilk he tested me for PA. By this time, I was totally wiped out - no strength, etc.

I get injections eery 3-months, but start to feel tired 4-weeks before I'm due.

How did you get them to change the frequency from 3-m to 2-m?

[Nackapan in reply to Michael-MGP]

Write to your G.pIts in the bnf guidelines 2-3 months

So shoukdnt be a problem.

Doctors are not uo to date with the change until yiu mention it snd they read it.

Otherwise Gp's csn prescribe b12 at a frequency they think in the best interest to each patient.

Keep it shirt

Just say your symptoms return at so many weeks abd yih need them more frequently

I understand your frustration with the system I've trusted fir years

I've also been told to walk 2 miles a day. Ect .

I woukd live to . I actually said I'm not lazy. Why lije you say shoukd we constantly try snd justify things. Itsca fatigue no one seems to get unless they have the misfortune if experiencing it.

The sort that stops yiu digesting at times. With nobrhyne or reason.

I also once did 12 hour night shifts . Si do know what 'normal ' shattered ' is like.

I do both sc and go to the surgery.

[Hidden]

I was a hypochondriac, non compliant with anti depressants, told it was all in my head, they even convinced my partner. It took a lot of investigations on my part to find out what was wrong and going private.Got MRI scans done which showed the damage done to my body. You are not alone!

I too lost my livelihood due to sub standard treatment (these were the actual words from a G.P.)

My advice is to be self reliant and treat yourself like most of us do on this website. It's cheap and once you get use to self injecting you won't look back.

[Nackapan in reply to Hidden]

I was told to make adjustments to my life. By one Gp.Also he thought my very low b12 ' a red herring'??

Too ill at the time to question.

When I had to see that Gp again I dud ask.

He had no idea why he said it.

I have him details...nothing. A passing comment hit me so hard and he had no idea why he said it??

Also tried to be taken down the mental health route on several occasions.

Even started to question it ad I refused antidepressants yet again.

The fact is it showed great mental strength dealing with all the symptoms and uncertainty .

Never acknowledged.

I remember the sheer fear of thinking hes saying I woulnt improve.

Convincing your partner horrible. Good you got the tests done so you know .

[wedgewood]

In case you need this information ——

German online pharmacies that will ship to U.K.

Brexit has caused problems for German online pharmacies who were supplying Vitamin B-12 ampoules to U.K. They now have to register with U.K. customs and collect any VAT for them and also have extra paper work,because we are no longer in the single European market. So many of those pharmacies have given up shipping to U.K. . Some , thank goodness, still do .

bodfeld-apotheke.de. A large and reliable pharmacy But they will now only accept payment from U.K. by Bank Transfer . Simple if you have mobile or online Banking .They supply all the information that you need to make a transfer . Otherwise a trip to your bank , for which the charge is £25.00 !

Courier €9.89

You might be able to pay using your Amazon account . Worth a try !

apotheke-marienbrunn.de delivery -€12.95

The drop-down list of countries on this site calls the U.K

“ Vereinigtes Königreich Grossbrittaniens und Nord Irland “ United Kingdom of Great Britain and Northern Ireland “ (In case you don’t recognise it !)

The Rotexmedica packet is displayed blank . You don’t see the usual red and white packet for some reason Maybe because Rotexmedica has been bought by a French company, Panpharma , and they expect the carton to be changed( I don’t really know) But not to worry - they send the right stuff in the usual packet .

shop.apotal.de Courier €19.95

apohealth.de Click on American flag for English

pharma24.de Courier 14.90 This pharmacy sent me 100 ampoules with a use -by date of only 12 months , where other are 2 years and more . I complained , but was told that 6 months is an acceptable use-by date, and they had sent me 12 months . So ,if you use this pharmacy , don’t order more than you would use in 1year .

Curavendi.de Courier - €19.34

Amazon.de ( German Amazon ) Obtainable in English Often have Hevert B-12 depot ampoules which are 1mg x2ml ampoules ,if they don’t have Rotexmedica 1mg x 1ml . So same strength , but double the amount of liquid .

“Depot” indicates Hydroxocobalamin, which is what the NHS uses . Amazon delivery charges are reasonable.

——————————————————————————

Search for Rotexmedica B12 depot . ( Hydroxocobalamin) These ampoules are 1mgx1ml

Ref. number to get straight to packs of 10+ -03862297

For packs of 100 ampoules (10 x 10) 03862305

This is correct for June 2021 . Can be out of stock sometimes , but back in a day or two .

If a site is only in German , use a translation app , or Google Chrome .

Bear in mind that some sites refer to the U.K. as

Vereinigtes Königreich Grossbritannien und Nord Ireland ( United Kingdom of Great Britain and Northern Ireland) on the drop-down country identification list

Also plain” Grossbritannien “ . The sites named above do all ship to U.K.

[Hidden in reply to wedgewood]

Thank you soooo much for the information. I'm in US. I pray I can order from at least one of these .

[wedgewood in reply to Hidden]

You might find this information better for you as you are in the USA

Supplies for injecting B12 in USA .( Canadian online pharmacies )

biosenseclinic.com Has Cynocobalamin in single use ampoules ( safest method) and multi-use vials .Also have needles

canadadrugsuperstore.com has same as above.

bulksyringes.com has needles and syringes

allegromedical.com ditto. ditto

shopmedvet.com ditto. ditto

——————————————————————————

Methylcobalamin can be obtained from a USA source in Boca Raton

vitaminquick.com

vitaminb12online.com

Supply all the cobalamins from Australia

—————————————————————————

B12 can be administered by either an Intra-Muscular or a sub-cutaneous injection .

For an I.M. Injection a 25G x 1 inch needle can be used .

For a sub-cutaneous injection a 30G x 1/2 inch needle

A long coarse needle , say 21G x 11/2 inches long, can be used to withdraw the B12 from the ampoule. This is needed because the needle is made blunt by touching the ampoule . This would make the injection painful .

[Hidden in reply to wedgewood]

Wedgewood you just don't know how I APPRECIATE YOU! THANK YOU for taking time to share that information with me. Have a wonderful day and GOD bless you! 🙂

[HappyHealthyGirl in reply to Hidden]

Hi Hidden ,

You might find this article useful when talking to US doctors:

stichtingb12tekort.nl/engli...

Re' Holland has "No maximum dose:

The Dutch National Health Council therefore decided not to determine a safe upper intake level for vitamin B12. In their report from 2003 “Voedingsnormen: vitamine B6, foliumzuur en vitamine B12” the council joined expert commissions from the American Institute of Medicine and the Scientific Committee for Human Food from the European Union, who had already reported 3 years earlier that toxicity from high dose vitamin B12 poses no real danger. 1"

1. Voedingsnormen: vitamine B6, foliumzuur en vitamine B12. (Nutritional standards: vitamin B6, folic acid, vitamin B12) Gezondheidsraad.Publicatienr. 2003/04, Gezondheidsraad, (Dutch National Health Counsel) Den Haag 2003:130-31

[Hidden in reply to HappyHealthyGirl]

Thank you. This is helpful.. I will certainly pass this along to my doctor. By the way love your name "HappyHealthyGirl" Thanks again.

[HappyHealthyGirl in reply to wedgewood]

Hi wedgewood ,

Thank you for posting the info' on current German online pharmacies.

What's the German for methylcobalamin??

[wedgewood in reply to HappyHealthyGirl]

The German for Methyl is ——— METHYL !

[HappyHealthyGirl in reply to wedgewood]

Thanks wedgewood !! 😀

I thought it might be! and tried it, but it doesn't appear in any of the titles or Descriptions, & none of the boxes that come up in the searches show it printed on the outside.... 😵

[wedgewood in reply to HappyHealthyGirl]

You cannot get Methylcobalamin ampoules from the usual German online pharmacies . You can get it direct from a small manufacturing pharmacy in Munich . Arnika

Methylcobalamin ampoules are obtainable from Arnika manufacturing pharmacy in Munich Germany . To obtain information , go on their website

arnika-apo.de

and find the online form to fill out , and they will get back to you and give you all the information that you need . Otherwise you can email them

[e-mail]

or phone them on

[phone]

[HappyHealthyGirl in reply to wedgewood]

Thanks wedgewood ,

Sorry for my tardy reply - I did type one at the time but my computer decided to reboot for an update & it was lost - sorry. 😖

I did try Arnika just prior to Brexit, but got a standard reply to contact them again when things had settled down.

I hadn't realised that they were the only EU suppliers of methyl-cobalamin - thanks for the info'.

[Kazania]

You are not alone. I like many others self-inject; after talking and writing to the GP to no avail. You’re NOT a hypochondriac, this seems to be a common belief in general practice, but it just indicates a large gap in medical knowledge. At least my current GP acknowledges that “I know more than she does” about my PA and Thyroid !!! Utterly scary, how did it get like this! Do the self-injecting and keep yourself well. Take care.

[akanari]

This is a common experience! Go ahead and take control of your own health. I am lucky enough to have responded to sublinguals (Jarrow 1000 + 400 Folate) when my injections were spaced out and my symptoms returned. Otherwise I would also have begun self-injections. Those who have the energy to educate the medical establishment are my heroes but we can't afford to wait for their success!

[bal456]

I felt as if I was a hypochondriac by the way my GP treated me. Now that they have acknowledged I have PA and subsequent neurological symptoms they are being more attentive. I am being referred to see so many specialists now it is exhausting. I too feel as if I have permanent nerve damage but it is early days so that may change. I suggest you see a neurologist and get a firm diagnosis of neuropathy which should make it easier to get more regular injections. It seems clear to me that this deadly disease is being under diagnosed and under treated far too regularly. On the plus side my hair is growing back and the scar on my finger no longer hurts since I lost sensation in them!