IS this for ever ???: I have had B 1... - Pernicious Anaemi...

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IS this for ever ???

squeeler profile image
12 Replies

I have had B 12 injections every three months ,for approx 3 years ,and ,I take a self inflicted Tablet, daily.

In all honesty ...i feel no difference at all, Does this mean I no longer need B 12. G.P said that a blood test was not necessary . Anyone else been in this situation.??

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squeeler profile image
squeeler
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12 Replies
clivealive profile image
clivealiveForum Support

Hi squeeler are you saying that you no longer have any of the symptoms associated with a Vitamin B12 deficiency and none appear to return in the run up to your next scheduled injection?

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

A lot will depend on what caused the original deficiency. Do you know what that was?

If the cause wasn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially.

Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

I guess the only way you will find out whether or not you need the supplements is to stop taking them for several months and see what happens but that may mean you risk "losing" your injections from your surgery once they have been "stopped".

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

squeeler profile image
squeeler in reply toclivealive

I am well ,thank you.

Gambit62 profile image
Gambit62Administrator

squeeler - are you saying that you have never noticed any benefit either from the injections or from the tablets?

Possible that there may be something else going on.

Are your folate levels okay? Have you been tested for thyroid problems.

40% of patients with PA seem to go on to develop hashimotos.

squeeler profile image
squeeler in reply toGambit62

Hello Gambit,,,I HAD been with a very unsatisfactory practise ,who didn't want to ,or,/couldn't be bothered ,I asked on numerous occasions for an under active thyroid check. and various other tests ,none of which were attended to ,so I moved to another practise, and am slowly getting my problems and questions sorted. I do have mega Tinnitus ,that I have had for 6 years, All the things that come into being with this untreatable problem, are causing me lots of stress ,and worst of all ,sleep deprivation,which is by far the worst thing.My head is screaming at this moment .24/7 is hard to live with. I don't honestly know if the B 12 is doing me any good, but how can I tell if I haven't been a blood test. So I don't know if I am low on iron ,or something else. There is nothing more dangerous than a doctor who doesn't care.

Gambit62 profile image
Gambit62Administrator in reply tosqueeler

constant retesting of serum B12 isn't useful after loading doses as the normal range doesn't apply. It could be worth doing as a one-off - just before your next maintenance shot is due - to check that you aren't someone who metabolises B12 quickly so you need more frequent injections (ie if it comes back quite low), but a high result won't rule out an on-going B12 problem.

It might also be worth looking at MMA and homocysteine as these could give indications of what might be happening at the cell level - but these tests are more expensive and need to be done in a context that rules out other things that would elevate them (eg liver and kidney problems in the case of MMA and folate absorption problems in the case of homocysteine).

If you really don't notice anything changing after a B12 shot then its unlikely that B12 is the only problem or the thing that is causing the on-going symptoms. If you do notice an improvement but it doesn't last long that could mean that you need more frequent B12 shots ... and that you are one of the many who doesn't find any oral supplements helpful.

squeeler profile image
squeeler in reply toGambit62

I did have ten blood tests a few months ago and all were good ,I have NOT had a B 12 test since the original one, the G ,P said it wasn't necessary to do any. that was three years ago. I do take a range of herb and vitamin supplements which obviously keep me in good health, I also have a positive mind on illnesses that beset us all, I don't dwell on "What if's "The principle of Body heal thyself used to work on the horses. must apply to humans as well.

squeeler profile image
squeeler in reply toGambit62

Forgot to ask you what is hashimotos ???? Sounds like some sort of Sushi

Gambit62 profile image
Gambit62Administrator in reply tosqueeler

hashis/hashimotos = autoimmune thyrodosis.

It is named after the doctor who first recognised it. He was Japanese. Japan is a country where iodine intake is high. High iodine levels appear to be one of the factors that will activate latent genes involved in autoimmune thyrodosis.

squeeler profile image
squeeler in reply toGambit62

Thank you. funny thing about Iodine and me,,,, I cannot take it orally, used in C.T scans, but I am O.K with the intravenous delivery. Who says that bodies don't have a mind of their own !!!

helvella profile image
helvella in reply tosqueeler

Which leads to the question, just why were you even trying to take it orally?

squeeler profile image
squeeler in reply tohelvella

It is given when having a contrast scan,, the iodine is given in the arm ,and helps to show what they are looking for ,in a stronger definition And a huge drink of iodine is also given ,I suppose to help even more. Orally .it makes my mouth feel as though it has been scraped with razor blades ,tongue and gums as well. So,,, I do not have the oral bit.

Marz profile image
Marz in reply tosqueeler

Doctors seem to know very little about auto-immune thyroiditis - Hashimotos. You will need the anti-bodies TPO & Tg tested to rule it out. Rarely tested in the NHS -possibly the TPO. The other correct tests are TSH - FT4 & FT3 - again not all are done , sadly and so thousands are missed.

Low thyroid affects the uptake of nutrients from food or supplements due to lower acid levels. Testing of VitD - Folate - Ferritin are also useful and if low can affect optimal thyroid function.

Thousands have to have Private Testing done through Thyroid UK in order to have the correct testing done. Home Testing kits and results by e-mail - job done !

thyroiduk.org

Click onto About Testing - in the above link - if appropriate. I am not a medic - but have Hashimotos - B12 issues - Crohns and 72 years of experience and still learning new things daily 😊

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