Triobe - any experiences?: Hi, Just... - Pernicious Anaemi...

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Triobe - any experiences?

jamesstott profile image
10 Replies

Hi,

Just tried to renew my prescription for my B12 injections, and my doctor has given me a prescription for Triobe instead. I am in Norway, I have had no problems before with previous doctors prescribing me injections.

To be fair, I have just changed doctors, and have an appointment to see her on Thursday to find out why - I think she hasnt read through my history properly. She has said these are for depression, and hasnt even mentioned the pernicious anemia in her message.

So, I guess my question is, should I be pushing her to go back on the injections, or are these tablets good enough? Has anyone any experiences with these?

James

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helvella profile image
helvella

I didn't know what was in them so looked them up:

What TrioBe contains

- The active substances are 0.5 mg vitamin B12 , 0.8 mg folic acid, and 3 mg vitamin B6.

- The other ingredients are calcium hydrogen phosphate dihydrate, microcrystalline cellulose, sodium starch glycollate, magnesium stearate, colloidal anhydrous silica.

docetp.mpa.se/LMF/TrioBe%20...

Sleepybunny profile image
Sleepybunny

In the UK there are B12 guidelines eg

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate Deficiency" should be on page 3 of listed guidelines.

Flowchart below from BSH Cobalamin and Folate guidelines

stichtingb12tekort.nl/weten...

There is also the BNF(British National formulary) which gives info to UK doctors on what they can prescribe. Info for PA and B12 deficiency is in Chapter 9 section 1.2

evidence.nhs.uk/formulary/b...

UK guidelines state that PA requires lifelong treatment and the BNF makes it clear that it should be injections.

Are there similar guidelines in Norway? If national b12 deficiency guidelines do not exist in Norway perhaps GP would be interested in UK guidelines?

It's possible that the PAS (Pernicious Anaemia Society) which has members from around the world might be able to tell you.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Martyn Hooper , the chair of the PAS has published a book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" I gave a copy to my GP.

"I think she hasnt read through my history properly. "

Have you considered writing a letter to GP?

This link about writing to GPs is to a UK B12 website . Perhaps the ideas could be adapted to someone in Norway.

b12deficiency.info/b12-writ...

Even in UK , there is a possibility that injections may at some point be replaced with oral tablets. There are some people on the forum who have found that oral tablets seem to have little or no effect on them.

Blog post from Martyn Hooper's blog about oral B12 treatment.

martynhooper.com/2016/08/02...

jamesstott profile image
jamesstott in reply toSleepybunny

Thanks for all the information, this will help me get together some info.

I will first see my doctor on Thursday as the response I got with my request does seem like she just hasnt ready my history very well. I will however do some research before my appointment so I am armed with facts.

I have sent an email to PAS to see if they know the guidelines for Norway. If not, I will do some research myself.

wedgewood profile image
wedgewood

If you have been diagnosed with Pernicious Anaemia, you need injections of B12 , Triobe is an oral B vitamin complex which PA patients will not be able to absorb . .

jamesstott profile image
jamesstott in reply towedgewood

Thanks for the reply. I thought that was the case, but good to have it confirmed by someone else.

wedgewood profile image
wedgewood in reply tojamesstott

I should have said that you will not be able toabsorb the vitamin B12. orally. The other B Vitamins can be absorbed orally .

Jo55 profile image
Jo55

I could be wrong but I'm sure I have read that B6 can be toxic if too much is taken because it is the only b vitamin that is not water soluble. Not sure what the amount is though

helvella profile image
helvella in reply toJo55

Just because something is water soluble (and B6 is classed as being so), doesn't mean it cannot be taken in excess. Let us just be sensible about this - we know that excess of, for example sodium chloride, even more so potassium chloride, and even water itself all have damaging effects. Why shouldn't it be so about B vitamins?

I think the issue is that fat-soluble vitamins are difficult to get rid of if we end up with an excess. Not that it is impossible have a damaging excess of a water soluble vitamin.

Wiki says:

Side effects

Adverse effects have been documented from vitamin B6 supplements, but never from food sources. Toxicologic animal studies identify specific destruction of the dorsal root ganglia[30] which is documented in human cases of overdose of pyridoxine.[31] Although it is a water-soluble vitamin and is excreted in the urine, doses of pyridoxine in excess of the RDI over long periods of time result in painful and ultimately irreversible neurological problems.

The primary symptoms are pain and numbness of the extremities. In severe cases, motor neuropathy may occur with "slowing of motor conduction velocities, prolonged F wave latencies, and prolonged sensory latencies in both lower extremities", causing difficulty in walking.[32] Sensory neuropathy typically develops at doses of pyridoxine in excess of 1,000 mg per day, but adverse effects can occur with much less, so doses over 200 mg are not considered safe.[33] Symptoms among women taking lower doses have been reported.[34] Two reported cases of neuropathy with pyridoxine treatment of 24 and 40 mg/day may have been coincidental.[33]

jamesstott profile image
jamesstott

A little update. I managed to get a message to my doctor, and she contacted me back saying that after she had found my old patient records, she was in agreement that I should have the injections and renewed my prescription.

Thanks for all the information you guys have given me. Was good to get a refresher as it's been a while since I last read up on it all.

Sleepybunny profile image
Sleepybunny

Thank goodness she found your records. Probably still worth tracking down Norwegian b12 guidelines in case of future problems.

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