I have said quite often on here that I had 5 plasma methylmalonic acid tests done. I was wrong. In fact, I had 6.
The first one was requested by my GP in 2016 because she believed that I had functional B12 deficiency- after not responding well to B12 injections.
It was 351 nmol/L (range: 0-280 nmol/L), so her diagnosis was confirmed by the lab. MMA levels are supposed to return to normal about 3 days after loading injections have repleted B12.
The next four were all taken by haematology:
364 nmol/L in early 2017.
Then two in mid 2017: they tested it just prior to my B12 injection and then two days after it: 351 nmol/L and 393 nmol/L.
Later in 2017 at the last appointment: 308 nmol/L.
-It was decided that a raised MMA was my "normal". Soon after this, I started self injecting every other day.
And finally, the missing one - taken by Adult Inherited Metabolic Diseases consultant back in mid-2019, a copy of the result found on the last page of their report: 205 nmol/L !!!
So it has taken me three years instead of three days (and frequent self injections) to get my MMA within range. Why ?
Who knows .
Here are some things I do know about MMA tests:
Can be difficult for GPs to request this test : it is expensive and many local hospitals do not provide it.
If serum B12 level is below range, there is generally no need to test MMA : no secondary marker being required.
MMA is considered the most representative marker of B12 insufficiency- and an early indicator: can be raised before B12 is below range.
Renal problems must be ruled out as a cause of raised MMA.
Small intestine bacterial overgrowth (SIBO) needs to be ruled out as a cause by fasting hydrogen breath test. SIBO will rob you of B12 along with other vitamins- the oil-based ones. It can be difficult to get rid of the bacteria (antibiotics).
MMA test can give a false normal if antibiotics have been taken recently, as they can destroy the flora needed for propionic acid (precursor to MMA).
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Cherylclaire
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Addenbrooke's and I are pretty convinced that I have SIBO among other problems but when I went for an investigation into it they discovered a problem with my liver texture (probably as a result of my liver failure 30 years ago), some minor biliary system anomaly and that my pancreas has atrophied and almost stopped working. Unfortunately these extras rather distracted them and then coronavirus arrived and everything has been put on hold. They want to do more testing before they decide what to do about the SIBO but they know I don't have any immunity so apparently don't want me near health centres for a couple more months.
I'm glad you're getting somewhere, even if it is frustratingly slow progress and is throwing up more questions than answers!
So far I have found them to be very good - very refreshing after other mad experiences.
I'm glad your daughter got good results with them too: well done.
I had a week's worth of Flucloxacillin for a knuckle joint infection recently and it really improved things for me - sorted the knuckle, improved my digestion radically and fixed a dodgy tooth too! It's a bit of pain to take (one hour before food or two hours afterward) but I don't get any major side effects from it.
Thankfully the knuckle is fine now and the tooth is OK but my digestion is already going wrong again.
I had good results with my digestion last year when I had nitrofurantoin but that cripples me with nausea and sleep.
I tolerate Amoxycillin well but the last couple of courses weren't particularly effective and I had to have others to cure the problem.
A course of Trimethoprim devastated my folate a couple of years ago and it took me 9 months to get over that so that's one to be avoided!
Erythromycin makes me desperately sick so that's out of the question!
And so on!
Thank you for your care and support - I promise I will try to be careful when I can get some help. xx
On mine is metronnizadole with Augmentin. Many years ago .Awful. made me more ill than the abscess.
I will remember flucloxacillin . I may have had that. Not on my never again list
I rarely take antibiotics it's usually for teeth!!
Yes my daughter went round in circles in Bristol and Essex. Mainly sent on rheumatology route. I knew something amiss from the age of 9 . All I could do was to keep getting her seen!!
Good care but never got to the root of the problem. For POTs definitely undiagnosed b12 deficiency
I think hospital environments at present safer than supermarkets. They wear proper PPE and patients wear masks and gloves. Also plastic aprons good.
Another daughter is having to go as maternity Carries on.
All going well I'm going to be a granny!! I now know about (entinox) gas and air . Never knew that depletes b12.
I didnt get on with probiotics
My daughter is having good results with a probiotic daily. Akso on a very limited diet.
Well better than it used to be.
Thay was one of my ' firsts'
I had a situation when I felt as though I needed to eat tea early at 1600. So I did. I actually couldnt digest it just sat there
Then another first reflux when all I could do was lie down.
Put down to proper fatigue . Body decides to literally shut down.
So digestion is work for the body which sometimes cant be done.
I wonder if the body working so much harder as just not working as it should causes the horrendous fatigue.
I'm so glad you said that - I get "too tired to eat" and know I must sleep first, no matter how much I need the nutrients.
I knew you can kill lambs by feeding them when they are too cold and I go cold if I get too tired so I sort of deduced it from that and found it worked: you need energy for digestion. You shouldn't work horses after a concentrate meal for the same sort of reasons - because digestion and metabolism take quite a bit of energy, if you divert their energy to exercise they don't digest their food so well, making them more prone to colic.
That's also why proteins have a lower dietary energy rating than simple carbohydrates - because more energy is required to digest them and so the nett energy output is lower.
I have felt the same way about hospitals, especially recently.
I do avoid supermarkets at all costs and disinfect or quarantine any shopping I get.
Woohoo "Grandma"!!! I so hope everything goes OK for you all and you will be able to see your new grandchild somehow, despite the coronavirus and your difficulties.
Hi, liver and pancreas issues seem to go hand in hand with B12/parietal cell damage. I guess you've already been checked for Coeliac but are you gluten free? This might be worth a look
The pancreas link with the other two is interesting - I wasn't aware of it as a common thing but had just observed it seemed to be linked with me.
I have tried going gluten free but only stuck it for a fortnight as it made me bowel incontinent and gave me other side effects that worried me - as I know I'm already auto immune I didn't want my system, which does seem to tolerate gluten OK, suddenly deciding that it didn't recognise it any more so I would have to go gluten free - especially with the incontinence problem!
I've reduced my sugar intake but that doesn't seem to have made any difference other than I can eat more nutritional foods for the same calories so it's better for me.
My pleasure, only sorry that I can't be more help. I couldn't tolerate bought gluten free as reacted to the potato, rice and especially corn, starches so ended up completely grain free. This suits me but I can see it might not be the same for everyone and it isn't an easy option. I use a free amino acid supplement but am absorbing better now I've changed the diet so much, so much that I need to be starting to watch my weight! Cheers x
It's really good to know how different everyone is too - that alone "allows" me to be more accepting of my weird and wonderful health anomalies, but also gives me the encouragement to keep trying different things to improve my outcome.
I agree, these forums are immensely useful - both for much needed support and encouragement, and for shared experience and knowledge. Very cheering to know that we are not weird, and not alone xx
I love this forum too! It feels so good to connect with others who are suffering from the same issue. I look at the posts every morning with my coffee ☕️
My daughter is gluton free . Also csnt tolerate shop bought for the same reasons. Yes hard work making everything from scratch. Also diary fructose free. The only meat she diesnt get ill from so far is chicken. The dark meat she likes but tolerate less . Fats?
She used to love food and eat everything I mean everything apart from cheese.
Big benefits took years to work out and ongoing
Dieticians supportive but not instructive
I find I need carbs and gluton.
Have always has good sigats and bad.
Have not fancied as many bad since ill
Do drink more eater too abs fruit juice as no alcohol yet
It is hard work, I agree, but worth it to find a few insights into what we can do to help ourselves heal. I was ok with chicken for a while, after I stopped being able to digest other meats, but struggle with that too now. I have a little fish when my mast cells are behaving and histamine isn't too high (unlike now!) but it has to be super fresh.
I use a little coconut oil and quite a bit of extra virgin olive oil. I too need some carbs, I eat eggs, and a few nuts. Lots of veg and some fruit. No alcohol, like you, so plenty of water (usually hot) plus ginger or lemon and ginger tea. I chew chunks of fresh ginger and have lemon juice or apple cider vinegar with meals to help digestion. Best wishes
Yes apple cider vinegar good. My daughter has lots of seedss almond milk . Czng tolerate eggs. I can but earlier in the day
Yes sounds similar as she had veg smoothies. A nemw ntroduction as csnt desk with nuch fibre.
I eat alot of veg and fruit
Iv3 never looked so ill on such good food though .
Terrible headache again today?? Day after b12 Injection. I thought this had stopped . Sorg that give nausea and cant move . Doing this in sports as sets tinnitus off. But also need distraction.
Are you food dependant? Meaning little and often?
I find I need tk eat quite alot between 0700- 1700 then nothing as too weary to eat . Tealise it's not just physical activity but trying thud or talking akso.
I use ginger for the nausea and find a little magnesium oil spray on my temples helps with headaches, but I use it regularly so know that I am ok with it.
I do eat more regular meals now, but do need to have enough food with me when out for long days working etc (not at the moment obviously) as I can crash very quickly. I try to eat between about 8am and 6pm latest. I get very tired so useless in the evenings - sleep early and a lot!
I started having hand and arm problems 20 years ago and couldn't write, cook, open anything etc for quite a long time, so am used to pacing a bit but have improved a lot. More recently I have been very lacking in confidence being on my own (unsteady walking, felt like ground was moving, often dizzy and swimmy headed etc) so always with my partner. I remember how brilliant it was the first time I felt well enough to walk about 100 yards and go into a greengrocer's on my own. I suspect that with lockdown I shall struggle again once we are out more. I am still happy to be able to do little things - I did some hoovering yesterday and today am exhausted, so collapsed with a favourite book.
It is great that you have a list, and I know that you will gradually manage to work your way through it and find a way. Some smaller things too, would be a good idea, then you know that you are making progress. I should think grooming cats is quite an achievement! Hard enough to catch them!! Maybe yours are the affectionate sort who like a cuddle.
Magnesium is brilliant. Most people are low in it and you need it for rather a lot to work properly. I couldn't tolerate tablets but use Better You flakes in a foot bath or the oil spray every day. Started off just a little bit every few days and built up, but it has made a big difference. Vit D too, was low and essential for me to get it better.
I'm glad you managed to have your walk, even if you were having to concentrate so hard. It is a very strange feeling, the ground tilting, or coming up to meet you, or bouncing/vibrating. I see things as moving when they are not, which doesn't help. Optician said neurological. Time to collapse now and get my feet in warm magnesium. Have a peaceful evening x
I assume with pancreatic atrophy you have exocrine pancreatic insufficiency? It will have stopped producing the enzymes needed to digest your food. I have this although not the atrophy (yet). You need prescription enzymes to correct this - Creon. You may already know this but there are a significant few of us with these coexisting conditions and it is being recognised more.
None of this happened straight away, Nackapan - went to GP in Jan 2015.
Also, I seem to have had more luck than you with GPs. If I hadn't had such a good and persistent GP, wouldn't have got to see all those consultants.
No real answers, no treatment other than the self injecting and multivitamins, only D3 on prescription. Troughs and peaks - but better than I was.
Yes, still moving forward (except when not) - although it has taken years and lost me my previous job, I'm still employed part-time (and still furloughed currently).
Keep on going. You have determination in bucketloads.
No I realise it didnt happen straight away...alot of years.
Alot of referrals. Alot of illness.
Yes strange not being employed.
The irony is I rarely took a day off when I was employed for 36 years.
Glad you have managed to get back to part time and have been furloughed.
Yes all going well will be lovely to be a granny.
This is my forte/ skill set after all being a Nutsery Nurse. I intended helping alot giving childcare too...
Just so frustrating coukdnt even spend a few hours talking with her without being teally ill in the evening. Face to face in the garden. (couldnt on the phone)
Yes I'm strong willed and still hoping to function .
I think/hope increasing injections I've brought on more symptoms in the worse before better.
I love life and just want to be in it again like all of us.
Hope you continue to make improvements too.
Yes a symptom free few hours or day would be good.
Other than that, no more tests/ consultants/ GP visits/ NHS injections (stopped by practice because I self inject not due to Covid)- except oral medicine consultant in about 4-6 months. He got rid of my angular cheilitis, so have high hopes for solution to daily burning mouth -and maybe he can help me with the four loose teeth I'm determined to keep. Will let you know.
What is going on with you right now, briarhillcat ? Maybe someone here can help.
Funny you say determined to keep your loose teeth. I hope you do.
My last problem tooth I finally saw an 'emergency' dentist for after a month. Ivr been twice. Today it's totally fallen apart. In a way glad I'd resorted to painkillers today as head so sore. At least in my system for tooth.
I was ready to get if out last time. Dentist said worth saving. I dont think possible now because of the delay in treatment .
I know difficult times. Just baf luck.
Hope I will be seen. If taken out another round if antibiotics.
Only just got rid of thrush from last lot
So eat slush until the dentists reopen to save your teeth!!
Well at least all in a row so not difficult to make a plate!
But like you, don't now react well to antibiotics (bad headaches and vertigo), and last one got infected because we are prone to that too. So will try to cling on.
Save what can be saved, Nackapan , because not even sure why this is happening.
My b12 was 208 and my MMA was 460. I am 100% confident that this diagnosed my b12 deficiency. After 7 days of injections (loading doses), my b12 was within normal range and my MMA came down to normal range also. But, I am curious if it will persist. I am having bloodwork done again before my next injection to see....
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