Can't believe it!- new gastro finally ordered IF and parietal antibodies without me even mentioning B12 - after countless years of suffering

[Heidiv]

Hi all,

I had given up all hope in the medical community after lifelong mysterious illnesses for which drs. never found a cause (and just gave me antibiotics or other meds that made things worse).

I decided this summer I would be my own dr. and get to the root cause. After reading Sally Pacholok's book found a hematologist and he said I could start B12 shots considering my (neurological) symptoms and quite low B12.

As I'd had already some success before with going wheat free it was already clear to me anyway that I have an absorption problem.

After si for 3-4 months a lot of my symptoms got a lot better, esp. the exhaustion and brain fog which got hugely better, and my muscle weakness in arms and legs and thanks to that the pain in my knees is mucb better too.

Yesterday I met with a new gastroenterologist here in Singapore, didn't expect anything just wanted to give it a shot. She looked at my files (which were more like a book) with all my blood results of the past 6 years (incl. from last year in Singapore) and was shocked. She asked me why any of these drs. had never ordered an IF or parietal antibodies test. I thought she was referring to the quite low B12 in my results from last year, but she said any dr. (based on the results from 6 and 4 years ago) should have ordered them then. I am deficient in almost everything. She's rarely seen such a bad case. I also had 2 endo/gastroscopies and 1 colonoscopy and I was always told all was fine, while I have severe atrophy.

I asked her if this could point in the direction of Pernicious Anaemia and instead of saying "we have to wait for blood results first" she said "yes" quite unequivocally.

It's been a very long and very lonely journey, also I didn't know if I was giving me the correct dosage of B12, so it's reassuring that at least 1 dr. knows about Pernicious Anaemia and recognises the signs and symptoms.

She was particularly shocked about my tests done here a year ago and that my malabsorption wasn't pointed out to me and instead was given a wrong diagnosis of Lupus.

I have been battling all my life, with allergies, always being sick with one virus after another and failure to thrive (dr. just told me I should eat more while I was eating loads but stayed skin and bones and very small).

Then came the mental health problems, and as if that wasn't enough, since then all my physical symptoms became "psychosomatic". All of that was in Belgium.

And when I started B12 shots with Gp he was laughing at me that I didn't need them after a couple because he tested my blood.

So it was quite an emotional day yesterday. Thank God for the few drs. who take their job seriously, care about their patient and have a professional conscience.

[Nackapan]

I'm pleased the doctor you saw explained everything.

I'm always so shocked at most doctors ignorance.

I'm sure you have read how I reliable the tests are for PA. Also there has to be a gap after an injection. I don't know how long that gap is.

Anyhow tih have a clinical diagnosis at last.

One of my grown up children was diagnosed with fibromyalgia ?lupus aent diem the mental health route. Pain clinic the list goes on.

A severe b12 deficiency was found I hospital many years later.......it makes me sick to the stomach they didn't di such a simple blood test years earlier. Dud limbed punctures brain scans and si ir goes on.

It must've been an emotional day.

Always is when if makes sense at last.

[Heidiv in reply to Nackapan]

Hi Nackapan, thank you for your remarks! Yes, I'm not getting my hopes up too much because of possible false negatives (I've been having shots every week now for 4 months) and also the question stays whether she is going to be able to help/guide me. I just wanted to express my pleasant surprise that one dr. was knowledgeable, after all the ignorant drs. I've had to put up with until now. Of course it is extra sad that while it was staring the other drs. in the face, and while my muscles and carrillage kept weakening, they preferred prescribing antidepressants and heavy painkillers like they did with your daughter (I also got a diagnosis of fibromyalgia which IMO is no diagnosisi at all and was sent to a paindoctor). Thankfully my stomach couldn't "stomach" nor the Lyrica or Tramadol he wanted me to take or I might have ended up with an addiction on top of all my other problems.

But submitting someone to tests like lumbar puncture, brain scans, etc... while she has severe B12 deficiency is quite unbelievable.

[Nackapan in reply to Heidiv]

Yes in hindsight . Presented like a stroke.

Also made her more ill.

Then discharged at midnight with no warning. Me 200 miles away reassured they we were keeping her in so I could get there again in the morning. I'd been half living in a cheap hotel opposite the hospital! All very stressful. So many similar events happened over years. So many have similar stories of undiagnosed PA or b12 deficiency which left gives you other medical problems. B12 deficiency was at the route . As so much going on with very different presentation didn't recognise it was then happening to me !! Just thought it fatigue from stress and the menopause. Mind more age related . Not a very big gap between finding out for both

The rest if the family have all had b12 tested now of course.

I hope you get on okay. I think I've read that if you have the Ifa test to near b12 injection it can skew the result. Ask.

Take care.

[Heidiv in reply to Nackapan]

Hi, Yeah I had also so much going on just before it slowly started to dawn on me that I had had bad absorption problems for at least 6 years. 2 moves, one to Abu Dhabi, then last year to Singapore. It took the deficiencies to a whole new level. Presented itself as joint/muscle/connective tissue pain and muscle weakness (just to lift my hands above my shoulders was too much). So ended up at 3 different rheumatologist who didn't know what to do with me. Told me every time I had an autoimmune issue going on but couldn't find out which one 😱 To make matters worse, my sister got diagnosed at the same time with rheumatoid arthritis so I was almost convinced I had it too but tests showed i don't have it.

After going wheat free in Abu Dhabi a spectacular improvement. This was the first sign that there were some absorption issues going on. Still no dr. I told about all this didn't think of it even with bloodresults that showed too low values for so many things (zinc, vitamins - esp. B12-, minerals,...).

After moving to Singapore where the climate put a terrible strain on my body, I also got food poisoning 5 months in, and since then got one problem after the other. Swelling behind my left knee (I'd never had any problems like this before), drs. telling me to rest for months which led to muscle wasting. Still went to my yearly ski reunion and managed to do some skiing. Then came back to Singapore and within 24h my right knee started aching the same way the left did. Drs. here just told me it was old age (I'm 49) and didn't find it peculiar that both mg knees were suddenly in such bad shape within a matter of 6 weeks.

Since then I refused their advice and have tried to stay as active as possible, doing walks and biking. Last summer i started si and 4 months later I walked on the Great Wall of China. As long as I pace myself it's fine. But hoping to get some big improvements further down the line because my knees are aching quite a bit with monsoon season now in Singapore. We will have to move after only 2 years and don't know where to yet (very stressful which is really bad for my health), all of this because of this deficiency having dragged on for my whole life. Although I'm not the only one whose health is affected by this tropical very humid climate.

Stay strong too! Good that you've found the deficiency also to be in other relatives. Hopefully much more timely with less damage to repair.

[Cherylclaire Forum Support]

Yes. The good ones just seem to know.

I met an ENT consultant who told me that it was obvious that I had a B12 deficiency and that I was doing the right thing by self-injecting every other day but that I would need to be persistent because it would take a very long time to put it right.

No tests. He looked at me. He looked at my own records. He looked at my own photos. He praised my GP and had read her detailed notes, they were in the drawer next to him and he could quote from them without looking. He was kind.

I think he and my GP kept me trying. Plus all the lovely people here who gave me sound advice and morale-boosting kindness . I'm getting there -despite a tsunami of professional opposition to my regime .

Don't give up. Don't get disheartened. Misdiagnosis, negligence and ridicule have lost you time - don't lose any more of it. I've also met some awful gastroenterologists -but this one can help you. Wishing you all the best. We're here if you need us.

[Heidiv in reply to Cherylclaire]

Thank you so much for your reply! Yes, I forgot to mention that this group also helped me a lot, with advice and in not feeling alone. Great that you have found an ENT and Gp who know their stuff. The gastro also confirmed that I am doing the right thing by si (well I knew that, as I went from being incapacitated to going to Beijing on my own, and walk on the Great Wall within 3 months). But she thinks 1/week is way too much. I was already trying to go to 1/every fortnight on my own because I don't feel well anymore with 1/week. But I think she wants me to do even less (1/month or so). We'll see how goes. I'm too scared to lose hard fought progress and won't go suddenly to 1/month (maybe later) as my body still has so much damage to repair. She said she starts by injecting her patients 1/every fortnight for a while depending on how low the B12 is, then 1/month and then 1/every 3 months. We'll see if she will stay behind me and my decisions, I don't want to fight another dr.

[Cherylclaire Forum Support in reply to Heidiv]

Am currently trying to go from 1 every other day to 2 per week - because of anxiety from consultants (and practice) - who would like me to get back onto a regime that they are used to seeing. I have said that I would only be prepared to do this with close supervision from someone I trust - but I've not heard anything back and obviously not going to push it. So I know how you are feeling.

So far I have managed to last 3 days, but am keeping an eye out because deterioration is slow and accumulative - just like improvements !

[Heidiv in reply to Cherylclaire]

I'm on my 9th day now (for the second time). I am taking it slowly. I am not willing to take the risk of going suddenly on 1/every fortnight or 1/month (which I suspect is what she will want me to do).

As you say supervision "from someone you can trust". I'm not there yet with her after all the bad experiences I've had (dr. checking my B12 while injecting and then telling I had to stop as I had enough B12 to last for several years).

Until now, every dr. who told me to stop/ inject less frequently was wrong, with quite horrible consequences for me (having to build up the level again).

At least I have an understanding haematologist in Europe who told me definitely not to stop (but injecting 1/every fortnight is ok to him). I trust him more.

[Heidiv in reply to Heidiv]

Good luck with your injections! Yes, we have to be watchful, and we're the only ones who can monitor our bodies

[Cherylclaire Forum Support in reply to Heidiv]

Only one reason why I'm trying to make to gaps wider, really:

I started getting a heartbeat that would suddenly become very strong, pounding so much that I could feel it from groin to neck- thumping really hard. Not painful and not on exertion- exactly the opposite .

This was something that I'd experience previously over a long period but was very occasional before, and often would wake me suddenly in the night, as if someone had dropped a heavy book on the floor right next to me. Because it was occasional, and because I had seen "irregular heartbeat/ palpitations" on B12 deficiency symptom lists, I wasn't worried - so ironic that GP put it down to anxiety. [- In my sleep ?]

Since about April/May, this happens most days, quite often several times a day, quite often at night too. I happened to mention it to a Metabolics consultant, as a symptom, and her response was: "If you have been self-injecting every other day for such a long time, why would any one of your symptoms suddenly become more regular ? Go to your GP. This could be something else."

It made sense to me, so I did. I had a 24hr heart monitor fitted at the local hospital a month ago- and still GP practice has not received results. I've asked three times now, and so will take this as a good sign, in that you'd expect if there was something dangerous on the tape, they would have been a bit quicker in responding.

If it is anxiety, I'm unaware of it and certainly can't change what happens in my sleep. It has not got any better or worse, as far as I can tell, since April, but it seemed a good point to check what reducing injections might do for me - good or bad.

I'm not caving in under the weight of professional opposition, not when it appears to be so poorly informed and no research evidence in support of claims made . Indications are that I stopped getting worse when injections were more frequent, improved (albeit slowly) when more frequent still.

At least this is what I saw happening -and GP is in agreement. You are right Heidiv - we really are the only ones who can monitor what happens - and decide what to do about it . It shouldn't be like this but it is.