Follow-Up from Naturopathic Doc

[kjl3]

Opinions! So I went to a naturopathic doctor on Thursday after finding that my Cyano injections didn’t seem to be helping my symptoms (despite having them every other day). She recommended the following (i will post pics of products): B-Complex #6 as she feels that I am in need of more B6 also, Ribes Genmotherapy, Trident SAP Omega, Fulvic Trace Minerals and MagMind (Jarrow brand but I’m not sure how I feel about this yet) Does anyone have experience with any of these products? If so, please let me know your thoughts. I have more labs that are being done next week: TSH, FT3, FT4, TPO, Iron Panel, Ferritin, HGBA1C, Homocysteine, MMA, Parietal Cell Abs and Celiac Abs.

Any info would be helpful! Thanks!

[Emmapemma]

Hi kjl3, how long have you had your injections? From what I've understood from everyone here on PAS is that it can take time before you feel better.

I would hold off with any more tablets until you have had the results of all the other tests.

Hope you feel better soon.

[kjl3 in reply to Emmapemma]

Hi! I have been on injections for about 3 months. However, I had only been doing every other day injections for about 2-3 weeks but did not see any difference at all and my blood test b12 levels were barely rising at all even with every other day injections. This led to her thinking that I may not be absorbing/it is not ‘getting into my cells’ appropriately, possibly due to the type of b12. I do not have much b12 left to SI as I was prescribed and directed to only do it once a month but no doctors would listen to me when I told them it was not helping (that is when I took it upon myself to do every other day). I had 1 refill on injections but that’s slowly disappearing.

[fbirder in reply to kjl3]

That's about what I would expect from a naturopath.

The cyanocobalamin is getting injected into your body. It doesn't have to be absorbed. If it was 'not getting into your cells' then it would still be in the blood.

Why your blood levels aren't increasing is a mystery. How reliable is the source of your cyanocobalamin?

It can take a long time for symptoms of a B12 deficiency to abate. What were your symptoms? Have you seen any change since injections started?

[kjl3 in reply to fbirder]

The cyano was prescribed by a Neurologist and gotten from my local pharmacy so I think fairly reliable ?

My main symptoms were brain fog, forgetfulness, fatigue & blurry vision.

I started injections about 3 months ago and saw very little difference. For example, before my injections, my level was about 230 and then 3 weeks after injections (1 day after SI) my level was only at 600.

[Gambit62 Administrator in reply to kjl3]

possible that levels of 600 may indicate that you need B12 more frequently - but with cyano it's probably about par for the course. After your injection it will be off the scale and then it will fall as your kidneys remove it from your blood - on average this takes a month with cyano. However, using serum B12 as a guide post B12 injections isn't possible because the injections change the factors on which normal range was developed ad you may need much higher levels.

The symptoms you have could be due to any one of the things that you are being tested for - thyroid, diabetes, iron. homocysteine and MMA are secondary tests to clarify if there is likely to be a B12 deficiency in the presence of high serum B12 levels, but they can be raised by other things so really ought to be done in context that rules out those problems - eg liver and folate deficiency.

Have you had folate levels tested.

B6 is within the RDA for US but RDA is much lower in UK and Europe. doses of 100mcg a day over an extended period of time are the lower limit of reported cases of peripheral neuropathy - it usually reverses when supplementation stops but there have been some reported cases where it hasn't.

Don't take the biotin until after you have done the thyroid tests as it is known to interfere with the results.

[kjl3 in reply to Gambit62]

So the homocysteine and MMA won’t be reliable? Is that what you are saying? My folate level was tested (at the same time my follow up b12 showed 600, about 3 weeks after starting my weekly injections) and it stated >20.0ng/mL with limits stating >3.0ng/mL.

So you think that the b6 level is fine? I was really concerned about that but she said that it was within normal limits and feels as though I need more b6.

She did not mention the biotin messing up thyroid tests, will keep that in mind. Is 80mcg a lot of Biotin? I will be having my labs done in 2 days. Do you think that 3 days of this will severely skew my results ? What are the harms of too much Biotin? Thanks!

[Gambit62 Administrator in reply to kjl3]

the homocysteine and MMA results will be reliable its just that it is difficult to draw a definitive conclusion from them without having the full context - likely that they will come back in range which is okay - but if they come back high you really need to do a kidney panel before concluding the raised MMA is due to B12, and a folate test before concluding that raised homocysteine is due to B12.

If you aren't comfortable with taking that amount of B6 on a daily level then don't take it. B6 is important to health but, as with most vitamins and minerals, it's better to go for dietary sources unless you know you have an absorption problem that is affecting B6. The FDA would consider the dose okay.

On the celiac test - I hope you were made aware that there is no point in doing the test if you are on a gluten free diet.

[Gambit62 Administrator in reply to Gambit62]

sorry - forgot to mention - there have never been any reported cases of B6 toxicity from dietary intake.

[kjl3 in reply to Gambit62]

Thanks for all your information! I will post back with results for advice

[kjl3 in reply to Gambit62]

How about the Biotin & thyroid test? Will 3 days skew? What are harms of too much Biotin?

[Gambit62 Administrator in reply to kjl3]

to be honest I can't remember the precise time but think its nearer a week.

This is what FDA say about biotin and testing

fda.gov/medicaldevices/safe...

this is what labtestsonline says about biotin

labtestsonline.org/news/fda...

I can't actually find anything that ties it down to a specific time period and it seems very unclear how long it takes for excess biotin to be removed.

[kjl3 in reply to Gambit62]

Great info! Will stop until after I have my labs done, thanks!

[kjl3 in reply to Gambit62]

Yes, she made me aware of that information regarding the celiac test.. i am not and have not been on a gluten free diet.

[Plucky1976 in reply to kjl3]

I wouldn’t worry too much about your level but rather the way frequent injections make you feel. If you feel improvement then stick with it. I didn’t see a huge improvement for a few months and that’s with 3 injections every week. I am also on cyano as I’m in Canada. I’ve been doing them for over a year now and my level sits at 1100. That’s with only 2 days in between. I am currently dropping down to one injection to see how I do. I started feeling great only when I got my vitamin D up and when I was about 8 months into my injections. Good luck and hope you feel better soon.

[fbirder]

The blackcurrant and fish juice capsules look OK. I doubt the former will do much - not many people with a semi-sensible diet have a problem with vitamin C.

Too much B6 can be harmful - it can cause peripheral neuropathy. There is no way that I would take 100 mg unless a real doctor had showed me blood work saying that I had a deficiency. And then I wouldn't take them for long. I wouldn't take them on a non-doctors 'feeling'.

[kjl3 in reply to fbirder]

Where are you seeing vitamin C? I am familiar with overdoing it with the b6, she explained that she will not be keeping me on this for long and wants to see my upcoming lab results and go from there to determine type of b12, absorption, etc. I too am nervous about too much b6. She did not seem concerned with this amount ??? Should I be???

[fbirder in reply to kjl3]

I assumed that was the black currant.