Unsure what to do next

Hi gang!

It's now almost a year since I was diagnosed with low B12 last July. Then I crashed and ended up with SACD symptoms, could hardly stand up, and discovered this forum and ended up self-injecting. Thanks for your assistance on this, I am eternally grateful.

I have another appointment with the doctor tomorrow and could do with some ideas as to direction.

I've no doubt improved a lot since then but I'm still suffering from crippling anxiety, only managing to get out of the house once a week and I'm worried there is no improvement from here. I keep thinking today's going to be the day it all gets better, and I try to do bits but nothing seems to be working. I'm stuck.

I got a load more blood tests done as I wanted to check my levels. The surgery called me to say they wanted to see me about my high cholesterol but one quick google shows B12 issues also cause high cholesterol. For nine months I lived on nothing but salad and steamed veg and my cholesterol hardly moved. I've always been big, in fact I'm two stone lighter now at 45 than I was at 19 when I was 19 stone. Reading up on B12 I see it's involved in converting fat and carbs to useful stuff, plus looking at what gene makeup I have with various MTHFR, COMT, and so on I can see how these factors may have affected me in terms of lethargy and serotonin levels throughout my life. The only time I felt "good" was when I gave up gluten previously, hence why I want to have the biopsy to hopefully confirm or not confirm celiac.

I've recently put on a stone because I'm back on gluten cos I booked in for a biopsy celiac test next month. That's a pain as I've done nothing but run to the toilet for the last couple of weeks, although that seems to have calmed down last couple of days thankfully.

I'm currently injecting 2/3/4 times a day, now splitting my ampoules up so it's not costing a fortune. I'm finding that's just about keeping me going but not getting me far. I've now been stuck here camping out in my father's spare room for two years, was previously practically bedridden for 2 years in my own flat before that and I can't see much of a way out at the moment. My business relied on me being out there networking - I haven't had a 'job' for someone else since 2001 and the last time I had to sit in an office a couple of years back for a contract I had complete paranoia all day and couldn't handle it.

TSH (mu/L) [0.3-5.6]: Jul: 2.79; Sep: 0.88; Jun: 1.88

Haemoglobin Concentration (g/L) [130-170]: Jul:165; Aug: 160; Jan: 164; Mar: 161; Jun 174

White blood count (10*9/L) [4-10]: Jul: 6.8; Aug: 7.6; Jan: 7; Mar: 10.4; Jun: 6.7

MCV (fL) [83-101]: Jul: 101.6; Aug: 103.8; Jan: 100.6; Mar: 100.2; Jun: 101.2

MCH (pg) [27-32]: Jul: 35.3 ; Aug: 36 ; Jan: 34.6 ; Mar: 35.2; Jun: 35.7

MCHC (g/L) [315-345]: Jul: 346; Aug: 346; Jan: 344; Mar: 351; Jun 352

Cholesterol (mmol/L) [5]: Jul: 8.57; Jun: 8.18

I did notice my ESR had gone down a lot: ESR (mm/H] [0-5]: Jul: 15; Jun: 10

All my doc seems concerned about now is my cholesterol level when I believe it's all linked. She doesn't bat an eyelid about my MCV & MCHC whenever I say it's still high

I asked for MMA & Homocysteine before & the lab didn't do it, this time they didn't again and did Active B12 which of course came out high cos I'd just injected. Though now I realise MMA & Homocysteine are pretty useless once been injecting.

So I'm making my notes for tomorrow about the relationship between cholesterol and B12 but really just getting a bit despondent - I'm sure it'll get better in time but I kinda need it to speed up a bit, still having to borrow to exist and can't seem to make the leap and get back in the swing of things, nothing I do seems to be working as good as it needs to.

Soz for the long rant, thanks for the ears

[Hidden]

Oh, forgot to say doc booked me in for an EMG on Monday so they're gonna stick needles in me - not sure what use it's gonna be to be honest but there you go. Only other thing she offered was counselling which I'm yet to take up cos my issues are B12 and lack of it working. Was misdiagnosed depressed back in 1994 at uni, went on prozac for a few months then stopped as knew I wasn't depressed, didn't know about B12 then!

[Annnon58 in reply to Hidden]

Hi Steve ; just wondering what dose of folic acid are you on ? It’s awful when you can’t leave the house but if you could just sit outside for few mins to get some Vitimin D or try and go for a 10 min walk to boost your mood and lower your cholesterol , I know easier said than done with anxiety but I find don’t overthink just do it , hope you do . You’ve done amazing so far. Good luck

[Hidden in reply to Annnon58]

Thanks Annnon58 ! My folic acid has been a bit of a journey... the FB group I was on said 5mg daily for alternate day injections so I did that but in a few days it made me really ill and I had brown blotches on my lips so I stopped it and was on 5mg of methylfolate for a few months, found out I have various MTHFR/MTRR/MTHFD mutations so perhaps that was an issue. Then earlier this year I was upping my frequency of injections and upped my methylfolate to 10mg daily but they were cheaper (well, not cheap but cheaper!) ones than the 5mg Intelligentlabs, they were MD.life ones with mixed reviews.

Then I realised probably lots of my anxiety was coming from too much methylfolate as it was making me very sharp tempered so I tried folinic acid but that didn't seem to work well with me, so I tried folic acid again but again I ended up feeling more ill and with brown blotches on my lips.

So now I only take methylfolate a couple of times a week as I've only got 10mg ones left and when I take them it's like getting high all day so don't want to be on them all the time. I have some Jarrows 400mcg ones which I also use but still feel a big effect even from those.

I didn't have any for a week or so and my bloods came back as >24 which is over range so think I have my folate under control, I think my current issues may be because I've been back on the gluten again for a few weeks and perhaps that's messing with my mind, that's why I'm going for the biopsy to see if I am celiac or not.

[Annnon58 in reply to Hidden]

Sorry Steve but too technical for me , hope you get good advice soon , take care . Good luck with the biopsy . I also hope you get the brown blotches on your lips investigated too.

[Hidden in reply to Annnon58]

Hah yeah trust me it's been a nightmare having to learn so much stuff! I don't have the blotches - they only appear when I take folic acid so I don't take it any more, only methylfolate sometimes. Folic acid is not good for some people who have issues with converting it - many are fine, some like me are not! Wishing you all the best in your recovery too.

[richgel999 in reply to Hidden]

Methylfolate is *strong* stuff. I only take around 75mcg/day - any more than that is too energizing to me and could lead to insomnia. Even 400mcg of methylfolate is a lot.

You should cut the capsule into 1/4ths or even 1/8ths. Or, try liquid B12+methylfolate. You should find a stable daily dose that makes you feel good, and it may very well be only 50-200 mcg/day.

[Hidden in reply to richgel999]

Hah yeah I sure found that out the hard way lol

Thanks for the tips, I'll have to play

[Hidden]

Hi Steve. My sincere condolences. You are not alone in your frustrations about not having your health concerns addressed by your Doctor.

Remember this, and remind yourself, often: Improvement will come only very slowly. Even with optimal treatment, recovery can take a long time. It may take months to get to feeling much better. It may take years.

I have no background in health science, nor in chemistry. It is my understanding that the B12 is water-soluble and will not do you harm. The other (fat-soluble) substances, if overdone, can even produce the same dreadful effects as deficiencies thereof. I hope one or more of the chemistry-knowledgeable members will write on this thread about that.

You need regular rotation among your injection sites. With that many shots per day, your injection sites are bound to get to complaining of it (by giving you pain). I am thinking you might try injecting larger (full 1 cc) doses, less often. I am not saying you are a plant -- I know you are not -- but you would not treat a parched/dehydrated plant by periodic drips of water. That would be inadequate treatment to enable its recovery. You would give it a good drink/flush of water with any remaining excess to its immediate needs (what would not shortly drain away) to be drawn on until time for its next watering, yes?

Yes, the homocysteine and MMA readings are useful in getting diagnosed, but they might also indicate inadequacy of treatment later.

From your lab report, your red blood cells seem to be a little large, just a little. Look at your fingernails. Do you see lunnulae in most of your fingernail beds? Please let us know what you see as to your lunnulae there. I believe it will take about four months with plenty of rest and taking it easy to replace those red cells with a new crop of red cells better able to serve your needs.

I was not able to lose weight until some months after my B12 treatment started. I have lots of permanent neuro complications, including memory issues -- especially as to shorter-term memory. By reference to some charts on the internet, I got generally familiar with glycemic index ratings (high, moderate, low) of the various foods in my diet, and I ate so that on the balance, my meals would have low or low-ish glycemic index. I could eat even high glycemic index stuff if I more than balanced it with low glycemic index stuff to reduce or smooth out the overall glycemic burden of any given meal. Also, I arranged my eating so that the starchier (higher glycemic index) stuff would be consumed earlier in the day, or around mid-day, rather than evening. Adding more (non-sweet type) onions to anything reduces the glycemic index. So does adding dill pickle chips to a sandwich. Unsweetened mustard, same. Going with whole-grain breads and pastas instead of the white flour products makes a little difference. Barley in soup, instead of noodles, makes some difference, too. Anyway, without needing to count any calories or grams, and without needing to remember about anything else I had been eating, there was this fairly effortless diet that gave me weight loss at the rate of five pounds (I believe that would be five-fourteenths stone) a week.

UK members -- is there some disability allowance benefit for which Steve might qualify?

[Hidden in reply to Hidden]

Hi Hidden and thanks for your considered response, yes it is a long journey and understandably hard for us and others around to deal with. I started self-injecting in September of last year and whilst am a lot better I can see there is still a long way to go.

I hadn't heard of the lunulae issue before, no I don't seem to have any at the moment which suggests digestion and immune issues which is very true. I'm currently back on gluten for a few weeks until 23rd July when I have my biopsy for celiac, I will be very glad once that's over to get back on a decent diet, so hopefully that will help. I think gluten has been my main issue with B12 all my life, slowing the system down so it doesn't make use of it properly.

The reason I began splitting up my ampoules recently is because I was injecting 1ml 3 or 4 times a day but realise a lot of that was due to me also taking large amounts of methylfolate. I've calmed down on that a lot, and now I've settled on .5ml twice a day for injecting, that seems to give me the 'juice' I need to keep going. My current circumstances / environment are causing me to stress out too much so hopefully once I get my business back up and running and cash coming through that'll help ease things. I've got a couple of potential projects on the go but as usual I need to get many more balls in the air in order for one or more to land nicely. Trouble is that takes confidence, which I am building day by day, just wish it'd hurry up!

As for benefits - lol yeah, well, because I am physically able to stack shelves there's no way I'd get benefits, I still get a little coming in from hosting fees each month and even that amount stops any benefits sadly. I did get them for a few weeks when I first came back here a couple of years ago but then I got a bit of work and had to come off them. It's truly more hassle than it's worth, and the people treat you like dirt.

My cooking's alright when I'm not on gluten, and I've been cutting out any below-ground stuff as that's harder for the body to process. I'm a lover of salads so that helps!

[Annnon58 in reply to Hidden]

Steve , you could apply for PIP , it isn’t income related . Give CAB a ring for advice , def worth a try . Good luck

[Hidden in reply to Annnon58]

thanks, i'll look into it!

[Annnon58 in reply to Hidden]

Hi Steve , only me again , just a thought , I read somewhere your not suposed to cut out gluten before a biopsy as gives false result ? I may be wrong but you could research this . All the best

[Hidden in reply to Annnon58]

Yeah sorry I type a lot - I'm back on gluten for 6 weeks for the test, getting through 2 loaves of bread a week lol.

[Cherylclaire Forum Support in reply to Hidden]

It may still be useful for you to have your MMA and homocysteine levels checked. MMA and/or homocysteine levels don't always behave as expected and so can be a good indicator of where to look next.

My MMA is consistently raised (of course no-one has any idea what it was like before I became B12 deficient so no "normal" comparison can be made) although not my homocysteine level -which is "normal" (no figures or range). What this means seems to depend on who you talk to:

1: GP said it is rare - her only 2 cases in 20 years (which includes me) have been diagnosed with functional B12 deficiency because of this + very high B12 serum levels after injections started for low B12 levels. Although this diagnosis was confirmed by the laboratory, I have since been "undiagnosed" by haematologists who seem to think B12 is the devil's own brew (toxic, addictive, carcinogenic..) , so may be a tad biased !

2: Inherited Metabolics Diseases consultant said that MMA would need to be very very high to indicate a B12 deficiency problem (???)- this is his experience from his patients.

3: Stichting B12 Tekort (see Pinned Posts top right-hand column) seem to agree with my GP: mildly raised MMA in adults nearly always B12 deficiency indicator.

PS: There was also research that I read on here somewhere (strange but fascinating) where a single subject, known to have B12 deficiency, deliberately deteriorated over years to see where the most reliable and earliest indicators of deficiency could be found- and raised MMA came up favourite there !

I know you have been looking at research yourself and may have seen this. Happy hunting, Steve, and let me know if you find anything useful or get any results.

[Hidden in reply to Cherylclaire]

Thanks Cherylclaire ! I was messaged and enlightened about one of the genes I have which has to do with this too:

"the nucleotide that produces the enzyme that our A66G++ doesn't. This A66G has the important role of recycling B12 and because ours are mutated our B12 is wasted and thus the deficiency. Also at this junction in the methylation cycle homocysteine is recycled to methionine. Because this is not happening in your cells the homocysteine is accumulating and becoming cholesterol in your blood supply."

I've pretty much given up trying to get MMA & Homocysteine tested by the NHS now as that's twice I've asked now and twice the lab haven't done it, so I'll just go by the fact I probably do have high homocysteine and aim to treat it with proper diet & exercise, just been out for an hour walk so a bit achy lol!

Maybe when I get some funds through I'll have them done privately, for the moment as long as I've got my B12 I'm a happy man!

[Cherylclaire Forum Support in reply to Hidden]

Stay happy, Steve, and take good care

[MoKayD]

It may be too late to reply to your post, but I just now read it and I wanted to tell you about my reaction to methyl B12. I tried to take sublingual methyl B12 for a few days and it gave me horrible anxiety. I felt awful. I'll stick with my cyanocobalamin shots.