When to test

[EiCa]

Hello,

I saw a new doctor yesterday. I have been self-injecting hydroxy every 2-3 weeks since August 2021. He wants me to get my methymalonic acid and homocysteine checked. If they are normal now, (they were very very high) he says I can reduce to one injection every 2-3 months. I am not sure I agree but my question is…my last injection was just over 2 weeks ago. How long should I wait to get my MMA, homocysteine and also an iron study done. I do have some time to spare to wait. I want the tests to be less influenced by the past 5 months of injections. He dismissed this as not a concern but I know it is!

Thank you for your responses or opinions.

[Nackapan]

I dudnt think it was a concern. Definitely won't affect yiur iron results. .

Not had the other tests but don't think affected . Not read anything on tgst.

Obviously b12 is not needed.

You say yiu know it's a concern.?

I'd be more concerned stopping my b12

Also b12 frequency shoukd be on Symptoms

Those tests are not usually routinely done.

Good to know as long as b12 not refuced as your mma abd homocysteine may be fine on injections as you need the b12 .

I think supplements are stopped to prove a b12 deficiency t the start if serum levels 'normal'??

I imagine you know you were deficient to need all the injections .

Good to know mma abd homocysteine dropped but no reason to reduce b12

Do not understand that doctors reasoning

.

[Gambit62 Administrator]

MMA and Homocysteine are markers for cellular deficiency of B12 so if they are okay that would imply that your cells have enough B12 ... however, they are markers relating to 2 specific processes in large number of processes that need B12 so there are some haematologists who don't think there are people that seem to need more frequent injections despite MMA and homocysteine being okay.You would need to wait at least 3-6 months for the tests unless you are specifically looking at 'functional B12 deficiency.

[EiCa in reply to Gambit62]

Thank you Gambit. I am going to repeat what I think I understood you to say. MMA and homocysteine in normal range is good, but there are other processes requiring B12, so these (normal) test results would not preclude the need for continuing B12 injections. I suspect I may have a functional B12 deficiency, as defined by low B12 and high MMA and homocycteine, but how would I know if that is the only problem?

[Gambit62 Administrator in reply to EiCa]

if your symptoms improve. There isn't a test

[waveylines]

I think doctors have become so governed by blood tests that they find it hard to accept that the management of B12 deficiency or PA is done by symptoms. Id be wary of a GP introducing tests like this to decide on frequency of b12 injections. Am sure its far outside of his expertise.......dabbling in things you know very little about is dangerous. I would take him a copy of the guidelines to remind him treatment should be based on symptoms not blood tests.

[EiCa in reply to waveylines]

Agreed. Nevertheless high MMA and homocysteine are not good. I know I can self-treat for symptoms. I didn’t bother discussing it with him. He was not open to discussion, which was clear.

[nellie237 in reply to EiCa]

I am in the UK, and am very curious which part of the world you are in? It is not something that is readily available here.

I had a coeliac diagnosis last year (so very low in everything) followed by acute kidney injury. My homocysteine levels must have been through the roof. I am also hypothyroid & have had a heart attack. So, risk ++++

I would be very pleased to get homocysteine checked, and know whether my levels are OK........or not. I'm assuming that as you SI that you are not going to change your B12 regimen.........so this week before your next jab seems like good timing to see what your levels are, now that you have been stable on your dose, rather than doing something different. Fingers crossed it gives you peace of mind. 😊

"I suspect I may have a functional B12 deficiency, as defined by low B12 and high MMA and homocycteine, but how would I know if that is the only problem?"

From a NICE Summary on Active B12 Assays:-

Functional tests for biochemical abnormalities associated with vitamin B12 deficiency, for example methylmalonic acid (MMA) or total homocysteine (Hcy) levels:

－ MMA is a substance produced when amino acids are metabolised. It is involved in a

reaction that uses vitamin B12 (cobalamin) as a cofactor and so can be used as an indicator of vitamin B12 levels. High levels of plasma MMA may indicate cobalamin deficiency. However, levels may not accurately indicate a deficiency in people aged over 65 years with kidney disease, small bowel bacterial overgrowth or reduced fluid content of the blood because these conditions can also cause elevated MMA levels (Devalia et al. 2014; Hunt et al. 2014).

－ Total serum Hcy is an indicator of vitamin B12 deficiency because cobalamin is needed for the synthesis of methionine from Hcy, and low levels of vitamin B12 lead to increased total serum Hcy. However, its use as a sole confirmatory test is limited because Hcy levels are also higher in people with folate deficiency, vitamin B6 deficiency, renal failure and hypothyroidism (Devalia et al. 2014).

Both MMA and Hcy are also late indicators of vitamin B12 deficiency (Herrmann and Geisel 2002).

[EiCa in reply to nellie237]

Hi Nellie,I am in the US. These tests are not that common but easy to get if any doctor is smart enough to order them.

I have some pretty intolerable side effects to B12 injections. Some may say they are healing signs, but I would actually like to reduce the frequency of my injections. If these tests are good, I will cut my injections back some as I have to weigh the risk/benefit of supplementing. I would just plan to monitor my blood levels regularly and/or continue tracking symptoms.

I did not know that SIBO could be associated with elevated MMA. Also did not know that folate and B6 deficiency could cause elevated homocysteine. Thank you for bringing this to my attention.

I am anxious to see if my MMA and homocysteine have gone down as they were alarmingly high. I have still not figured out the frequency/dosing of B12 I need as have many health problems that could be causing so many of my conditions.

I hope you get the tests you want. Thank you.

[Sleepybunny]

Hi,

"he says I can reduce to one injection every 2-3 months. I am not sure I agree "

I am not medically trained but my feeling is that when considering reducing injections, the patient and doctor should go by symptoms.

If you reduce frequency and your symptoms return quickly or worsen or new symptoms appear then that would suggest to me that reducing frequency is not a good idea.

Keep a daily symptoms diary which tracks changes in symptoms and when treatment is received. This should help you to work out how often you need jabs. It may be useful evidence to show GP.

To me the ideal treatment pattern is one where your symptoms are kept at bay.

Does your current treatment pattern of every 3-4 weeks keep your B12 deficiency symptoms at bay?

If not, maybe you need the injections more often than every 3 - 4 weeks.

You SI every 3 - 4 weeks and your GP wants you to reduce to every 2 - 3 months.

That's quite a big reduction in one go.

I had to self treat years ago as NHS had refused to treat me and I tried to space out injections very gradually.

I found my symptoms start coming back within a week of an injection which gave me a clue as to how often I needed to self treat.

Within two weeks and sometimes sooner, I get pins and needles in my spine and my mental health takes a nose dive so I have learnt that for me the BNF treatment patterns are not enough....

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

[EiCa in reply to Sleepybunny]

Thanks for your thoughts, Sleepy. I intend to keep up the injections if needed. So far I have only seen improvement in one symptom, but it is a big improvement so I will likely continue. My doctors were all very alarmed at my high MMA and homocysteine (high risk for stroke and heart attack)?so I just want to know that the B12 is helping that and I am not sure how quickly those factors go up and down in response to injections. I will wait a few more weeks at least. (Or until just before I feel I need another injection)

[Lotus69]

Hi EiCa, I’m just wondering if you source your hydroxy in the USA? If so I’d be very grateful if you would share the details please

[scnuke in reply to Lotus69]

Hello Lotus69 - I am in USA. Hydroxo is readily available with Rx at most any retail pharmacy. I use Walgreens and it runs about $20 for the 30 ML multidose vial using the GoodRx discount card. If self injecting using a multidose vial, be sure to follow all safety and sterility precautions and be sure to dispose of it no longer than 30 days after first use. Cyano B12 can be found through some health & beauty spas or vitamin outlets or from Canada. I have not found an OTC supplier of hydroxo.

[Lotus69 in reply to scnuke]

Thanks scnuke, I’m not sure my dr will prescribe but I’ll give it a try!

[EiCa in reply to Lotus69]

apotheke-Marienbrunn.de

I ordered November 27. I still have not received. It’s been just over 2 weeks.

[EiCa in reply to EiCa]

Lotus, These are individual ampoules.

[Lotus69 in reply to EiCa]

Thanks so much, I’ll check it out!