Pernicious Anaemia Society
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Feeling hopeless

Feeling so helpless and depressed. My injection isn't due until the 23rd January but now, in spite of using Viepatches B12+10 i am quite breathless and no inclination to do anything. Today I wearing 2 patches each containing 1000mcg of methylcobalimin. I keep telling the doctors and medicine reviews man that by the end of 4 weeks the breathlessness is getting bad and I have very little energy. They don't want to listen. 😢 I have got an appointment with a locum doctor tomorrow, one I haven't seen before and honestly I am dreading it in case he is as unsympathetic as the rest. I worry about what he will say if I tell him about the Vie patches. Altogether it's just rubbish at the moment. How many mcg's of b12 is ok to take in daily? I need help so much.

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Have been reading your post/thread of a month ago when you seemed so pleased with your patches. It is not possible to overdose on B12 as it is water soluble - so you could safely increase your dose.

I am wondering if there is something else going on in your body. Have you had your VitD and Ferritin tested ? Often low Iron can cause breathlessness - in addition to Low B12 of course. VitD needs to be around 100 and of course many people do not have enough sun during the winter months in the Northern Hemisphere and can cause low mood.

Another thought is Low Thyroid - which so often accompanies Low B12 - Folate - Ferritin and VitD. Often GP's only test the TSH which tells us very little - so much more needed for the full story - FT4 - FT3 and Thyroid Anti-bodies TPO & Tg.

Signs and Symptoms of Low B12 are very similar to Low Thyroid .... happy to help.

thyroiduk.org

thyroiduk.org/tuk/about_the...

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Thankyou for your helpful reply Mars. I have been on vitD for a few years now but don't know about Ferritin and not sure when thyroid was last checked. I will ask about that tomorrow. Hopefully get some sense. Will let you know how it goes ☺

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How much VitD are you taking ?

You are legally entitled to have copies of all test results so you can monitor your own progress and check if anything has been missed ! It would be good to know what tests were done for thyroid.

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Taking 1000 iu daily. Will definitely ask tomorrow. What really can confuse things as well is that I have a bad time with SAD syndrome and sit with special lamp every day. The weather here has been very dark these past days. Throw agoraphobia in to the mix as well which bad weather makes worse and it's a notch pitch of confusion. O dear...I do sound like a hypochondriac I'm afraid. 😣

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I am wondering if you need a higher dose of Vit D3 - of course it would be good to know your level so have it re-tested if possible along with calcium. There are co-factors to take with VitD - Magnesium and VitK 2- MK7.

SAD and agraphobia can be linked to low thyroid too. I have been on the Thyroid UK Forum here on HU with well over 70,000 members for over six yesrs - many struggling and Docs do not always know ....

thyroiduk.org

In the above link you will find the signs and symptoms of low thyroid. Thyroid UK features on the NHS Choices website as being a source of information so cannot be ignored by your GP ☺

Hopefully Spring is around the corner for you and everyone feels better when the sap begins to rise 😊 I retired to Crete in 2004 so am blessed with sun most days.

If you click onto my name in blue you can have a quick read of my profile - only takes a minute or two. It has been a long journey to wellness .....

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Don't mention the patches. Ask for more frequent injections. If they say they cannot then tell them that you are thinking of self-injecting. Tell them that hydroxocobalamin doesn't need a prescription in Germany and that Germans are trusted to treat themselves.

It may be that your doctor will decide that injecting you once a month would be preferable to allowing you to DIY.

No amount of B12 has been shown to be harmful.

People with cyanide poisoning are given 5,000,000 mcg intravenously - twice.

People with MS have been treated with tablets of 60,000 mcg a day for six months.

stichtingb12tekort.nl/weten...

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Thankyou girder. That is a very helpful reply too. The UK is very poor about this. Will let you know how it goes

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Hi Margaret-S

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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Thankyou clivealive. I will ask about folic acid tomorrow and see if doctor will be open to listening. You have lived with this horrible illness for so long and you have a wealth of information which is very helpful to those of us who are relatively new to it. Appreciate it.

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Hi Margaret-S as fbirder says don't tell your GP about your patches (pity we can't take him with us) but if you do have someone to take GP's won't be so dismissive of you with a witness present.

Don't worry about overdosing as the others have said - you can't.

PS Self injecting is really easy, kind people on here (thank you wedgewood ) can tell you what supplies you need and where to get them.

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Hi,

I use sublingual (under the tongue) b12 lozenges to top up sometimes. I have used 1000, 2500 and 5000mcg sublingual lozenges.

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Thankyou Sleepybunny. (Love the name 😊) I might have to think about them. Will see how the locum doctor handles the situation tomorrow. Will let you know

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Hi Margaret-S, I'd say as much as you need. It's water soluble. So, whatever your body doesn't need it eliminates it.

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Hi everyone. Got on so well today. Got injection. Getting it monthly from now on. Will give you all the full story tomorrow. Thankyou all for your advice and encouragement😘. Sorry for rush. Take care

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Hi,

Pleased to hear you are going to have monthly injections and nice to know there are some enlightened GPs in UK.

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Looking forward to hearing more 😊

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