Doc says no to more B12

[maymay28]

Hello Everyone !!! I'm relatively new here but have posted before. In May I was diagnosed with PA with a b12 level of 153. I was given weekly injection of b12 for about 2 months and then 1 injection every month thereafter. I am in the USA and my PCP did not go by my symptom. I was also supplementing with sublingual b12 during this time and when I tested it showed a b12 level of 1034. Right now I am experiencing jelly legs where I FEEL as if I'm about to collapse when I walk, inner tremors, dizziness, lightheaded when I attempt to do the slightest thing and weakness/fatigued. I'm also having trouble going to sleep and staying asleep. I asked my PCP if he could change my injection to every 3 weeks instead of every 4 weeks and I explained all the symptoms I'm having. He stated that MY b12 levels were well within range and totally dismissed my symptoms. He then stated that he could lose his license if I developed toxicity from too much b12 and he was not going to chance that. I looked at him in amazement. M y serum b12 is 886 and I am fully aware that this not my active b12 level. When I tried to explain this to him, he tuned me out. I now have to load up on a boat load of sublingual B12 SUPPLEMENTS to alleviate these symptoms. My PCP is an IDIOT and I will be looking for a new one. By the way I am also hypothyroid.

[clivealive Forum Support]

Hi maymay28 you need somehow to change your doctor as soon as possible as if you have P.A. it may well be that the sublingual tablets with be of little or no use other than to raise your serum B12 levels without it getting into the cells.

As for "toxicity from too much b12" you cannot "overdose" on B12 as any excess is excreted via your urine, See article below.

stichtingb12tekort.nl/weten...

I can certainly empathise with you as I too had a "one size fits all" doctor a few years back and only by changing was I able to get my cyanocobamalin injections now every three weeks.

I am not a medically trained person but I've had Pernicious Anaemia for more than 46 years.

I wish you well from the U.K.

[maymay28 in reply to clivealive]

thanks for your response clivealive. I agree with you completely and I am looking for a new PCP.

[Sleepybunny]

Hi,

I am not medically trained.

I wondered if your doctor had checked your folate and iron levels recently. Have your potassium levels been checked?

"stated that he could lose his license if I developed toxicity from too much b12"

English language articles from Dutch B12 website

"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years"

stichtingb12tekort.nl/weten...

"Misconceptions about a B12 deficiency"

stichtingb12tekort.nl/weten...

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

USA B12 website

b12awareness.org/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a pediatric version of this book.

[maymay28 in reply to Sleepybunny]

Thank you for the info Sleepybunny. I'm better off changing PCP which is what I'm going to do.

[maymay28]

thank you for responding beginner1. He is definitely an idiot and I will be changing PCP as soon as possible.

[Gambit62 Administrator]

tell your GP to look up the recommended treatment for cyanide poisoning. This is 5000mg of B12 administered intravenously over 15 minutes with a follow up dose if required after 30 minutes. This is the preferred treatment because of the lack of toxicity from B12. The only significant risk is the risk of hypertension (raised blood pressure) as a result of introducing the amount of fluid needed to carry the 5000mg.

So, that is potentially 10000x the amount you are having in a shot.

After a shot your serum B12 levels will be off the scale and then they will gradually fall over time - though how quickly they fall varies significantly from individual to individual.

In a patient who isn't receiving B12 injections a level of 1024 would be cause for investigation as it can be a sign of liver and kidney problems - in a patient who has B12 injections it will be an inevitable consequence of the injection at some point in time after the injection. Because some people respond to high levels of B12 in a way that seems to stop the B12 passing into cells where it is actually needed the symptoms of B12 deficiency with high levels of B12 (functional B12 deficiency) are recognised as a potential symptom of liver and kidney problems that can lead to raised B12 levels. May be your GP is getting confused with this.

Significant numbers of people need much higher B12 levels to feel well after loading doses - research by the PA showed that on average people needed to have levels of 1000 (not sure which unit of measure that was but suspect it was pmol/L). This is an average and reflects a huge variation - from people who need levels well above the normal range - to others who are fine in the normal range. Basically the fact that you have had injections means that the normal range just can't be applied. The PAS is currently doing some research into some interesting studies comparing people who are fine with 3 monthly hydroxocobalamin injections in the UK and those who aren't - still early days on identifying exactly what is going on but it would at least demonstrate to your doctor that people needing higher levels post loading doses is a real thing

pernicious-anaemia-society....

[maymay28 in reply to Gambit62]

thank you Gambit62. I will definitely request that he look up this treatment, but I'm now looking in my online portal for a new doctor. I no longer have any confidence in his ability to care for my health.

[Canarian]

Hi,

I’m PA and hypothyroid too.

And I’ve found the symptoms for both overlap as they’re both autoimmune problems.

Have you tried upping the thyroxine a bit.

If you’re borderline with the dose it may be the reason and not your B12.

[maymay28 in reply to Canarian]

Hello Canarian. I'm going to have my thyroid medication increased next week. I am on NDT, am taking 1and 1/2 grain now and will be upping to 2 grain. I'm hoping that it is the thyroid as my thyroid doctor is very easy to work with.

[Gambit62 Administrator in reply to maymay28]

that seems like a very sensible move - hope you find a good doctor

[Canarian in reply to maymay28]

Hi maymay28,

Just remember it takes a while for thyroid meds to take effect. It’s not instant.

[jlee0614]

I’ve found 2 doctors who seem to understand b12 my neurologist and my dermatologist. If you could get to a neurologist they may take you more seriously because MS and b12 issues have very similar symptoms. I’m not suggesting that you have MS just that a neurologist will probably understand. I have a prescription for a once a week SI shot from my neurologist. Good luck.

[maymay28 in reply to jlee0614]

thanks for your response jlee0614. I will look into the neurologist, hopefully he will help.