Haematology done with me: what next? Confused.

[Cherylclaire]

Haematology appointment on Wednesday was, as expected, final one.

She said my MMA is still moderately raised (393nmol/L) - but B12 (?), folate (?) , FBCs (?) active B12 (>128pmol/L) and homocysteine (7.2umol/L) levels are normal. MMA did not alter when checked just before B12 injection and 2 days after.

Said I don't have Functional B12 deficiency (previous diagnosis) and now believes that MMA problem is due to Small Intestine Bacterial Overgrowth (SIBO), so is sending me for a breath test ( October date ). Haven't yet had results back from Genetics lab or MRI brain scan from Neurology: she has told me that the genetics results will be a "waste of time" (single metabolic pathway?) because my homocysteine level is normal. She is sending me back to the Neurologist... not sure why because he had the EMG nerve tests done and they were fine....so I think because she wants to write something in letter to GP . Blood tests while I was there: FBC, B12, MMA again- said she will send the results when they come through.

Meanwhile, none of my symptoms has gone or changed, and B12 has already been reduced (halved) to 1 every 2 months yesterday so nurse informed me - and that's before GP gets any letter. Last time I saw GP, she said she would happily give me more than 1 injection a month if the haematologist consented to it. On Wednesday, this haematologist said that she could see no harm in having monthly B12 injections if I felt that they were doing me some good but I'd have to pay for them (?) - yes, this is the same haematologist who said last time that B12 was toxic, that there had been "animal testing" done ! She also suggested Gastro-enterologist, but have seen two already: both highly disinterested and no tests done. Can't keep doing this, waiting months and months for nothing but supercilious dismissal, so said no.

Really confused, also worried: been off work for a year and September looming ( I teach). Made appointment with GP for Tuesday:

what to say? what to ask for? where next? how can I get better without a diagnosis?

Cannot find a way back. First went to GP two and a half years ago. SIBO possible as bacteria rob you of vitamins including B12, but they are supposed to make their own folate, so shouldn't this be high? Has been low enough to be put on 3 month course of tablets as hair falls out and gums bleed. Still do.

[ At my very worst 2 injections after starting 1-injection-every-3-months (in Sept 2016), but never completely better or symptom-free even on 2-a-week (Oct 2016 for 6 months). Can find no other likely match for all my symptoms. ]

[GGourmet]

I really want to give some positive encouragement. I get my SIBO test results on the 31st August.

I understand that B12 is one of the last to be absorbed in the Ileum with Folate earlier. I also believe that although Folate can be produced it may not be absorbed if produced too late in the process. It might not be at high enough levels either. Is this correct anyone?

The breath test is usually just glucose and Lactulose. Glucose is done roughly over 60 mins and you must have a low start reading as it is generally regarded as positive when it increases by 20. This assesses overgrowth in the early small intestine as glucose is usually rapidly absorbed.

Lactulose is not metabolised by the body so lasts longer in the SI surviving into the bowel. This gives a better picture of overgrowth in the later stages of the SI. It's not a perfect test because you cannot be certain at exactly what stage the Lactulose leaves the SI moving into the bowel. At this stage the bacteria in the bowel naturally increase the readings but this is at a point beyond where there is assessment. Knowing the exact time is therefore important but not perfectly known. In some it can be 100 mins and others much longer before the Lactulose enters the bowel. The dietitian will hopefully have the knowledge and expertise to report the findings accurately to to your gastroenterologist.

Word of warning. If you have had a colonoscopy prep, Lactulose may produce similar effects as too might glucose. They certainly did for me.

I hope this helps, if only a little.

[Cherylclaire Forum Support in reply to GGourmet]

Yes, GGourmet , this is a great help. It gives me an idea of what to expect on the day - and after.

Never had any stomach pain or discomfort, which is why I don't have a Gastroenterologist: they are not interested in my condition, whatever it is. All my pain and discomfort is much lower in abdomen, which is why I was sent to bowel people first to rule out bowel cancer (and given all-clear after tests). So assuming if SIBO present, will be from lower end of small intestine.

Can I ask you (feel free to say "no" here) if you have been diagnosed with PA, or B12 deficiency, or functional B12 deficiency ? Or "not there yet" ? What first alerted GP to possibility of SIBO ?

I am not ruling this out as a problem, but still wondering why all symptoms indicate B12 deficiency, but only MMA levels able to back this up. None of the other tests done have: homocysteine, active B12 etc. so Haematologist ruled out previously-diagnosed "functional B12 deficiency" and cast me adrift. Lonely.

Now less lonely, GGourmet, so thanks for that.

[GGourmet in reply to Cherylclaire]

I can confirm that to date all PA tests are negative, although there is always an element of uncertainty with them. I was only confirmed B12 deficient after finally being referred through BUPA to a haematologist in London. I changed GP in the surgery about 4 times in this process, as they kept saying my symptoms were stress and anxiety. My GP never considered SIBO.

What happened was rapidly deteriorating GI problems including diarrhoea- Bristol stool test single movement ranging 3 to 7. Chronic abdominal pain which placed me in A&E once with assumed diverticulitis.

I have long standing IBS but Meberverine Hydrochloride stopped helping as was using this in combination with Kaolin & Morphine.

I stated to my new GP whether he felt this could be linked to my B12 deficiency, mentioned BUPA and away we went. Referred to a Gastroenterologist that I had researched in London. His worked on the basis that my symptoms were either Crohns or SIBO. Because of how serious Crohns is, testing for this was done first. This was the colonoscopy. This was thankfully negative. 4 weeks on, breath testing started. You must have a min 4 weeks after chronic diarrhoea as induced by the prep for colonoscopy, because this strips out any present overgrowth and you need it to recover to see if it's there.

[Cherylclaire Forum Support in reply to GGourmet]

Right. Well, my colonoscopy must have been over a year ago so am fine to go ahead.

Sorry you had to go through so much to get to a SIBO test. It is sometimes hard to keep focussed on the fact that it really IS all of them getting it wrong. You alone know what your life is like. Why would you continue to lie about that for years? To what end?

I told my neurologist that my GP would eventually become correct in her initial diagnosis of depression, since the more consultants you see without any end result, the more depressed you will become. Years pass, job's on the line, relationship likewise, and symptoms can make you unrecognisable even to yourself some days. What's not to be depressed about in that scenario?

However, I remain hopeful about this breath test. If I do have SIBO, then all I have to do is get someone, anyone, to see the clear pathway between that and B12 deficiency and osteoporosis. End in sight ????

[GGourmet in reply to Cherylclaire]

It's great to hear you are getting somewhere.

As you have been referred by your GP, I strongly suggest that you report any and all symptoms during the tests to the dietitian, even those that occur hours after. My diarrhoea took about 4.5 hours to materialise after sugar administering. This is probably after you leave the testing location.

You must do this because a gastroenterologist will be able to understand ongoing symptoms in the context of the test far better than your GP could hope to.

[Cherylclaire Forum Support in reply to GGourmet]

Daily diarrhoea for over 2 years might make this a little difficult to determine ! If it's a lot worse than what I already have, they better hope I'm not still at Guy's when it occurs !

Thanks for all your advice and please let me know how you are progressing.

[GGourmet in reply to Cherylclaire]

You are quite right but then if all other avenues have been ruled out the diarrhoea is being caused by something. Have you ever been tested for C Diff? It is possible to live with it and not get hospitalised.

[Cherylclaire Forum Support in reply to GGourmet]

Not that I know of, although I feel like I must have collected the set by now ! I'm seeing GP on Tuesday and will ask her. She does know there is something wrong with me and is trying to find connections. All the tests and consultants have been NHS provided, for which I'm very relieved.

Will also look it up now to see if it sounds like me. Cheers.

[GGourmet in reply to Cherylclaire]

It is believed that antibiotics were part of the root cause for me, triggering a bacterial imbalance. C Diff is often associated with extended antibiotic use. Metronidazole is often used to clear C Diff coincidentally the same antibiotic that can be used against SIBO but it depends upon what underlying bacteria may be thought to be behind your SIBO.

I appear to have developed SIBO after 2 sessions of metronidazole, even though I was taking on massive quantities of probiotics including live yoghurt with 5 different cultures, unpasteurised sauerkraut, kefir and 7 bacteria capsules.

[Cherylclaire Forum Support]

......Good God y'all ! Well they can't say you're not trying ! That's a cartload of safeguarding! Nothing else you could have done. Guess your immune system is not at it's best. Is that because of your B12 deficiency/ PA ?

This is all a bit chicken-and-egg, rather than elimination; some say PA people predisposed to SIBO because of low acidity creating favourable atmosphere, some say SIBO creates B12 deficiency because bacteria feed off it (and A, D and E) -and some still say SIBO instead of, because they just don't want to say "B12 deficiency" at all !

Further to that mix, treatment for SIBO appears to be......extended antibiotic use !

It would be funny, except it just isn't !