New Here. Seeking Advice or Insight.

[meghoboken]

Hi. I'm Meg. Recently had blood tests done and was told that I was "borderline" deficient in B12.

Results were:

Homocysteine 9.9 (range <10.4)

serum B12 282 (200-1100)

methylmalonic acid 319 (range 87-318)

Was told to take 500 mcg B12 daily. That was all. No mention of injections.

I have been treated for autoimmune thyroid disease for a while now. Thought my lingering fatigue, depression, achy muscles, tingly hands etc. were a periodic manifestation of residual thyroid symptoms, but since my thyroid was being treated and my levels were consistently normal, I resigned to thinking there's not much else I can do. Perhaps it was thyroid hormone levels fluctuating throughout the day and I would just have to endure it. Also, I noticed I was looking pale most mornings and decided to take iron supplements. They seem to work okay and my iron levels on blood tests started looking better (though never flagged as low).

I should say, I'm in the US and have a fairly open-minded endocrinologist in New York City, but I am thinking he has missed this for several years and only when this blip occurred recently, he decided to tell me to take a vitamin. This site and a good book taught me that not all B12 supplements are alike and I've now decided to take the sub-lingual methylcobalamin form of the vitamin at not 500 but 5000 mcgs.

Amazingly, I began feeling better after a few weeks. Still not sure if what I have is PA (though I have one autoimmune issue already and am told they are likely to go hand in hand).

Any advice or insight would be much appreciated.

Meg

[Gambit62 Administrator]

there are a number of ways that hypothyroidism can lead to B12 deficiency and also to problems with other vitamins and minerals. PA is one possibility - particularly if your hypothyroidism is auto-immune - but slow gut transit and the higher risk of bacterial overgrowth and infection as a result is another.

This is an article on thyrogastric syndrome that you might want to share with your GP

ncbi.nlm.nih.gov/pmc/articl...

Its more likely to be the higher dose than the move to methyl that is making you feel better. There's no real evidence that methyl is any better - just a lot of hype - and some people really don't get on well with it.

Oral rather than injection does seem to be increasingly used in the US with many insurance companies not supporting injection as a maintenance routine. There are a number of studies - including one relatively large one in Canada, showing that it can work well as a maintenance regime for large numbers of people - I think the figure was 60% but it may have been higher - but it doesn't work for everyone. If it works for you then it would probably be easier to stick with it.

[clivealive Forum Support]

Hi meghoboken

Cany you get your Folate level checked?

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

.

[Astridnova]

My mother has brain injury from pernicious anaemia and she had higher levels than you. My father had peripheral neuritis with low B12 and my partner also has pernicious anaemia. My blood levels were higher than yours but I'm not taking chances with my genetic history. I started out injecting all of them, but found out about the 5000iu sublingual losenges too. We all exist in much better condition with levels over 1400 these days. Everyone except my father has hypothyroid issues as well.

[Tricia2747]

Hi Meg,it would seem that b12. Levals vary from country to country, in fact in England, they vary enormously, from Scotland Ireland and wales, even different county's in England vary.I was diag last November 2017, my leval 169, but told borderline, probably suffered for years with b12 symptoms, but put it down to age (70) arthritis,and cancer (all clear in jan) so didn't give it a thought, but last March I started getting tingling in my feet and fingers,and very lethargic, followed by tendonitis in my shoulder,and a sore tongue, Dr didn't do a blood test till sept, but only started me on a of 6 course of injections in November, how different I felt,more energy,pain in shoulder gone, but neuropathy symptoms still there, I have a top up injection every 8 weeks, and take folic acid tabs as leval was 3, I also take 5000mcg sublingual tabs,when I feel the need

.I'm glad you have raised your tabs from 500 to ,5000, as Clive who is our guru,on this site will tell you, that you can't take to much b,12, your body gets rid of it.I don't know if my very long reply helps, this site certainly helped me,as I knew nothing about PA, a very helpful site, with lots of info.

best wishes Tricia.😀

[Gambit62 Administrator in reply to Tricia2747]

Tricia, there are two different sets of units used to measure B12 - pmol/L and ng/L ... they will give different ranges so it is important to make sure that you are comparing results using the same units.

[Tricia2747 in reply to Gambit62]

Looking back at my copy of results,the very first one, my serum b12 reads 169ng\L, that's it, no pmo/L result on, after my loading doses ending Dec my go tested y folate which read 3.01 ug/L and of course my B12 leval had shot up to, 2000ng/L

Can you tell me how quickly B12 leaves your body,as I was booked in for a top up, 3 months later, but by 6 weeks felt rubbish again, so I had another shot at 8 weeks,before my next 8 week shot,which is next week, they are doing another blood test before b12 top up, to check if I really do need more B12 inj In the near future, I'm worried now that if my levals have gone up above 169,the ruling for this area will they stop inj's, I feel really good following top up inj, and have started taking 5000ug boost spray, I'm not taking my spray at the moment as don't want my b12 looking good by the time they test me next week, so back to my question how quickly does b12 leave your body,?? oh! my main symptoms are neuropathy, feet and fingers,tiredness,and joint pains.still ongoing.

Thank you you reply appreciated Tricia.

[Gambit62 Administrator in reply to Tricia2747]

I can't tell you how quickly your body will remove the B12 as it varies a lot from person to person but on average hydroxocobalamin is retain 2x as long as cyanocobalamin and on average cyanocobalamin is retained for 1 month.

However, that may or may not be the reason why you are feeling rubbish at 6 weeks as B12 isn't about the amount in your blood it is about the amount in your cells and there is a chance that you may have a reaction to high serum B12 which makes the process that allows B12 to get from your blood to your cells a lot less efficient. Many people need much higher serum B12 levels after loading shots and the normal range really doesn't apply so can't be used as a guide to treatment - that needs to be based on symptoms.

[TrishEtc]

Hi Meg, I’m new here too. My B12 levels registered slightly higher than yours at 350, but then I had been taking sublingual methylcobalamin at 5000 mcg for several weeks before I was tested. My doctor told me that Japan guidelines recommend treatment for those who test under 500. She advised oral pills, but obviously that approach wasn’t doing enough, so I decided to pay for weekly shots out of pocket ($30) to jump start the process.

The first injection let me feel almost normal for two days, then I crashed. My second lasted three days so I think I’m on the right track--and I still take supplements daily. I get my third shot tomorrow.

My symptoms include extreme fatigue, tingling in my fingers and a swollen tongue.

If I were you, I’d look into the shots. Naturopaths in the US offer them as do some independent testing labs. I don’t know if I’m allowed to mention names, but a national chain with the initials ALTN offers the injections at some locations. I’m finding the shots are well worth the investment. (FYI: I also have a history of autoimmune disease. In my case it was Graves disease, in addition to an MTHFR polymorphism so folic acid is a no-no—I try to get natural folate—had surgery and antibiotics in the last year and am an athlete, all of which seem to be culprits in B12 depletion.)

Good luck. Sometimes you just have to take matters into your own hands.