B12 deficiency with constant stomach and back pain? Is it IBS?

[kiisa]

Hi there everyone, I'm new here. I'm a 22 year old female.

So I have been struggling with stomach problems for over a year now.

My symptoms (which may be graphic):

On and off diarrhoea

Occasional constipation

Mucus in stool

Bright red blood sometimes when wiping bottom (specks of it on toilet paper)

Constant stomach pain in lower right stomach region

Fatigue

Lower back pain which shoots down into buttocks

Pain in groin and right leg

Shortness of breath sometimes and a "weak" feeling in arms

Intense stomach cramps which are relieved sometimes by pooing

An urgent need to go to the toilet when needing a poo

Diarrhoea sometimes only 10-20 minutes after eating

So about a month ago I went to my GP about this, as I'm tired of it and I can't continue to shrug it off like it's nothing. I said to them I think I might have IBS, the first GP I saw just gave me a weeks sick note and said "I think you'll be ok after a week of rest". Nope, diarrhoea episodes were still persisting, stomach pains, cramps etc.

So I went back and saw a different GP and she examined my stomach (Murphy's Sign) and said she thinks it could be my gallbladder, so she referred me for an ultrasound. She also sent me to do blood, urine and stool tests.

The blood tests came back that I had an extremely low B12 level (86pg/mL) reference range: 180-1000pg/mL. So I was called into the GP about this and initially was told I would have to have B12 tablets to replace this. Then the next day I was called and made to make 6 appointments for my B12 injections (which I wasn't told about...). So fast forward a bit, I've had 5 B12 injections so far and I asked one of the GPs I saw if they would retest my B12 when I have finished this 6 dose course. He said no, the NHS don't typically retest or look for low B12 levels. I should also mention that my low B12 is not dietary related because I eat plenty of meat, eggs and have milk etc.

This leads me to believe that I may have a problem absorbing it in my digestive tract. The GP said I wouldn't be given anymore injections after these are done and I won't be retested... Is this common? I feel like because of the nature of my problem they should retest me. My liver function test also came back slightly abnormal, which they have planned to retest in 3 months.

About 2 weeks ago my stomach pain started to become intense and constant in my lower right and sometimes upper right abdomen, so I went back to the GP and he called for my ultrasound to be pushed to an urgent appointment due to suspected gallstones. I had the ultrasound on Friday and she said my pancreas, liver, kidneys, spleen and gallbladder all looked okay, no inflammation and no gallstones. She said where I explain the pain is in my bowels and stomach region.

I also started getting really bad back pain and pain all down my right leg. I have been taking 30mg cocodamol which do not help the pain and Buscopan to help with the spasms, which don't really do anything either. I'm making another appointment with the GP tomorrow hopefully so we can discuss my ultrasound results.

One night before my stomach pains started becoming intense I nearly fainted at work. I had to go outside and sit on the wall, as I became extremely nauseous and everything was spinning, I thought I was going to pass out. (I have had these episodes in the past) I felt like I was going to die. I went to vomit and nothing came up. I went back into the office and everyone said I looked extremely pale and they told me to go home.

The next day after this happened I was at the doctors for one of my B12 injections and the nurse checked my blood pressure, she said it was on the lower side. This is uncommon for me because my blood pressure is usually pre-high.

My fiance and I went for a meal after my ultrasound scan. 2 minutes after eating I suffered an extreme pain in my stomach everywhere. I've never felt anything like it in my entire life. I struggled all the way back to the train station, nearly in tears from the pain. I couldn't think of anything else. I felt like there was a 1000 knives inside of me. It hurt this way for around 2 hours, I had to go straight to bed when we got home. I didn't have any diarrhoea, I was just in absolute agony. I didn't eat a lot either...

I should also mention my stool result came back negative for H. pylori, so I'm almost certain that I don't have a stomach ulcer. I do not take anti-inflammatory medication usually. I don't take any medication on a regular basis apart from my contraceptive pill, Lucette and I am generally very healthy.

I am yet to be referred to a gastroenterologist, they really don't seem to care honestly...

Does this seem like typical IBS?... Is it really that hard to diagnose IBS? Could I be looking at something else entirely different?

[FRreedman]

Did they check your stool sample for Calprotectin levels, as this is a pretty good indicator of IBS and/or IBD? In any case I would want my GP to refer me for further tests to find out the cause of my pains and other problems.

You may have to remind your GP that pain/blood/diarrhoea are only indicators that something is not right, and they are acting as alarm bells, which once you have noted the problem should be turned off. (Which you would do with actual alarm bells)

[kiisa in reply to FRreedman]

Hello there, thanks for your reply.

No, as far as I'm aware they didn't check Calprotectin levels.

I had a full blood count done because the GP forgot to write on my record what she wanted to be tested... so the nurse who took my bloods didn't know what to write on the blood card. Typical huh?

I have been to the GP so many times this month and seen many different ones, they all really don't seem too bothered about my issues. I came out of one appointment about to burst into tears because the GP I saw kept going on his phone and not listening.

[kiisa in reply to kiisa]

I misread what you wrote, sorry! They only checked stool for H.pylori.

[FRreedman in reply to kiisa]

Wow!! I think a letter to the practice manager is in order. Patients are asked to switch their phones off when in consultation, and so should doctors. They should have the decency to listen and appear to listen to patients.

[kiisa in reply to FRreedman]

I sent a complaint in and was told I would receive a response within 10 working days. It's been over 2 weeks and I'm still waiting. It's really not looking good for them....

[FRreedman in reply to kiisa]

Maybe another ketter requesting the information, before requesting the assistance of the CCG and Healthwatch (A patient forum, assisting with complaints about the NHS and it's officers)

[kiisa in reply to FRreedman]

Yes, I will do that actually, good idea. Didn't know about CCG and Healthwatch, so thank you!

[Artemisraluca in reply to kiisa]

Can you switch GPs or go private to test your calprotectin? I think it is very important, as you also have bleeding. I really hope it is just Ibs and a little fissure from the diarhea, not something worse.

A colonoscopy should be done, too, imo.

[kiisa in reply to Artemisraluca]

I have an appointment today I will ask if they can do that for me. If not I think I’m going to have to look at changing my GP for sure. Had too many problems with this one for sure.

[Artemisraluca in reply to kiisa]

I hope they will test your calprotectin and refer you to a gastroenterologist for a colonoscopy and other stuff.

They seem pretty careless, changing them is normal if they won't help you today.

[Miti333 in reply to Artemisraluca]

Hi Raluca. Sorry for the question but are you from Romania?

[IBSNetwork Partner IBS Network]

Hi, We are the national charity supporting people living with IBS. theibsnetwork.org

We suggest going back to your GP.

[Hollings]

Hi I'm so sorry your feeling this way but it takes me right back I started with Ibs in my early twenties. We had to call the doctor out in the middle of the night she thought it might be an appendicitis which obviously it wasn't. I had to have a barium enema at the hospital which is something I hope I never have to experience again! These days I think it's just a blood test. I suggest you start a diary and see what your triggers are also you could try cutting out certain foods wheat, lactose eat a low fat diet. Drink green tea with lemon once a day it's not too bad! Also see if the doctors will give you some antispasmodic tablets or you could try Buscapone tablets from the chemist. Also paracetamol but not Nurofen it's bad for ibs. A hot water bottle and lying down also helps and relaxation techniques. I hope that you will find these suggestions helpful.It also sounds like your having mild panic attacks which is not unusual in our situation relaxation should help also breathing slowly helps.

[kiisa in reply to Hollings]

Hi, thanks for your reply. I have been taking paracetamol and buscopan. I have even been taking strong cocodamol, as I’m in that much pain. The pain never really goes away. Thanks for your suggestions, I’ve already tried cutting out dairy and it didn’t help. Do you ever get back pain with your IBS?

[Hollings in reply to kiisa]

I used to get back pain with gallstones but I had them removed now the pain from them was excruciating I was on tramadol and paracetamol together , it was worse than giving birth. If it is gallstones cocodamol will make the pain worse because I was prescribed it by the doctor but the hospital told me it made the pain worse. It really is a lot of trying different things to find what suits you. Buscopon didn't work for me I take dicycloverine 20 mg but its from the doctors. I get a lot of trapped wind which is very painful.

[Daisy2191]

I feel we have very similar symptoms. I'm 28 this month and only got referred to a gastroenterologist this year after over 10 years of symptoms. And for now all I have been told to do is follow low fodmap. Which I pretty much did anyway before seeing them. You need to push them and badger them at the gp to be referred. Also see if you can see the same one by booking in advance.

[kiisa in reply to Daisy2191]

I’m being persistent. I have a GP calling me today as I wasn’t able to make an appointment (typical). The things we have to do for them to listen to us...

[Daisy2191 in reply to kiisa]

I wish I had done more when I was younger and been confident enough to. Maybe I wouldn't be suffering so much now

[kiisa in reply to Daisy2191]

I’m sorry to hear that. I know how you must’ve felt though, truly. It’s an awful situation... and it affects everything. Social life, work life, love life.

[BabsyWabsy]

Sometimes you need to be a pushy patient. If you can access the practice website, there may be a GP whose 'special interest' is gut problems. You can also request a referral to a gastroenterologist for a second opinion. My own GP admitted he knew nothing about gut problems, so was happy to refer me. I know it feels wrong if you have always been deferential to your medical care givers, but sometimes they lack knowledge and can be patronising and complacent. It might help to take someone with you to your appointments.

[kiisa in reply to BabsyWabsy]

I’m honestly surprised they haven’t referred me yet, even the nurse who gives me my B12 injections asked if they had. I don’t even know anymore, I’m really tired of it all. I’m being pushy but they just don’t listen or I can never get through and make an appointment.

[BabsyWabsy in reply to kiisa]

They don't make it easy do they? You can ask for a second opinion and /or a referral. I think in the rush to get you in and out again, they don't always think about referrals. Sometimes you just have to stand your ground. If you think they are not taking you seriously, you could speak or write to the practice manager.

[kiisa in reply to BabsyWabsy]

I will. I’m already waiting a reply from the practice manager about one of the locum GPs we have at our surgery. I was also going to put another complaint in as they lost my stool sample and I was waiting over 2 weeks to hear back. I called the receptionist and she lied saying it had come back negative, when in reality, it hadn’t even been received!!! I’m saddened by all the pressure and strain on the NHS, but they don’t make it easy for themselves sometimes.

[BabsyWabsy in reply to kiisa]

That's not good. Any option to change to a different practice? Some receptionists need to learn customer service skills. That's an appalling way to treat a patient.

[kiisa in reply to BabsyWabsy]

I could change practice, although I’m not sure if it’d be any better. All GP surgeries seem to be the same... and yep, I was livid.

[Linley]

Agree with FReedman your GP needs to listen to what you are saying and get you a Gastro appointment, a colonoscopy needs to be preformed to see if anything is going on in the bowel. If that proves clear you look elsewhere until you find the cause of this discomfort.

Have you ever had any probs with your periods?

[kiisa in reply to Linley]

I agree with you. I’m going to ask to be referred as I haven’t yet for some reason... it’s like they know my body better than I do. I’ve never really had problems with my periods, but I sometimes get pain during sex and I recently have a reduced sex drive which may just be my B12 and pain.

[Linley in reply to kiisa]

Okay-so when you go back to your GP tell him about the pain during sex as you body is telling you something may be wrong-could be just an infection but needs sorting.

Good luck and let us know how you get on

[kiisa in reply to Linley]

I will tell them but, I’m 100% sure I don’t have an infection. They did urine tests and I don’t get any other symptoms regarding that apart from during sex. I also do regular sexual health checks and only ever had 1 partner. I’ve had a yeast infection twice in my life and I know how that feels so definitely not that either, haha. I’ve always sorta had the pain during sex, I thought it was vaginismus. it’s not a recent thing, just been ashamed and embarrassed to bring that up... especially to a male GP.

[Linley in reply to kiisa]

Sorry to say most Gynae's are men!!!

That said the one I saw for my period probs was great-he after all is the expert and you can always ask for a chaperone

[8goat]

Hi there kiisa. I'm so sorry to hear about the dreadful time you're having. A lot of those symptoms sound like IBS to me (no expert, but a sufferer). You really must get to a gastroenterologist. I would suggest that a colonoscopy may be in order as well. In my experience it's a really easy procedure and makes you feel better when you find there's nothing dire going on in there. In Victoria, Australia where I am there's a real campaign going for people to have their stools checked (with a kit) for traces of blood, and if there is blood they are sent off for a colonoscopy. Sounds like your blood is nice and bright, which is a good sign, but try to have the scope anyway to rule various problems out.

Don't let those medicos give you short shrift. It's their duty to care for you! All the best, and hope you get some relief somehow.

[kiisa in reply to 8goat]

Hi there, thank you. I will demand to be referred to a gastroenterologist. I’m surprised they did not check my stool for blood either, but as far as I’m aware they’re very reluctant to do that here, especially with younger people. I think my blood may be a tear, but the pain in my stomach and back I have doesn’t seem normal, especially because it worsened all of a sudden for no reason. Thank you so much, me too.

[Edith0]

Hi kiisa, sorry to hear you are having such an ordeal with your health and your GP. Understand as I had similar problems with mine who just kept telling me to eat grapes!

The back pain may be related to the b12 deficiency, a friend of mine has also just been diagnosed with this and had back pain and pins and needles going from her lower back and down her legs, it was her diabetic consultant who picked this up and not her GP who ignored her symptoms. Like you she has to have a course of injections and then b12 tablets for the rest of her life. The consultant said her symptoms were typical of b12 deficiency. He also said it was likely to take 12 months for her to begin to feel better. He also thinks it’s about how her system absorbs this vitamin and the deficiency is likely linked to years of diabetic medication use. So it may be that the pains you are getting are for two different reasons. Have you considered contacting PALS, the patient advise and liaison service. They can support you with your complaints about the GP practice. You can find your nearest PALS through the NHS website. Can I also suggest you ask for a referral to a dietician who can really help with IBS and probably the b12 deficiency.

I hope things begin to improve soon all the very best wishes.

[kiisa in reply to Edith0]

Thank you very much for such an informative reply, I appreciate it. Wow that’s terrible, grapes? ...I could probably do a better job than most GPs. That’s also really interesting, I didn’t think B12 deficiency could cause those types of symptoms! I know there’s a definite underlying cause to my deficiency though, as they said my intrinsic factor was fine (so no pernicious anaemia). I’m willing to bet 100% it’s a malabsorption problem. I sent the practice manager a complaint and I am still waiting on the reply from her about it all. I will let you know what the GP suggests today.

[Kimmiejo]

You have the same symptoms as me. The red blood when you wipe is hemroids, the almost fainting from cramps sweating and dizziness is from vasovagles the muscles cramp up in the abdomen causes what you described and wanting to throw up etc. all is caused from IBS I also have low B12 levels makes for a nervous stomach. I have Gerd as well gastro esophageal reflux disease where the stomach doesn’t close and let’s the acid back in to the esophagus so yes I would say IBS. I am thinking the doctors want to rule everything out before saying IBS as you are young. I have food allergies and intolerances which cause mine

[Kimmiejo in reply to Kimmiejo]

Also IBS causes your body to not digest things as well you flush out nutrients with out absorption so your immune system is weaker

[weegmack]

Hey there. I don’t really have much to add here. But I wanted to say to you that I’m just so sorry you’re going through all this, it’s just a nightmare 😞. You sound like a very strong person, so definitely demand to see a gastro. Your GPs sound like a bunch of wasters to me! How they’re behaving is nothing to do with the pressures on the NHS and everything to do with the practice manager. It’s like any other business - the attitude of staff generally reflects the attitude of the boss. The fact that you’ve had no answer to your complaint confirms that to me.

Please let us know how you get on and I’m sending you big hugs xxx

[kiisa in reply to weegmack]

Hello, thanks for your lovely reply. Sorry I've only just seen it! Yes they're huge time wasters... all I can do is persist and cope with my symptoms About the complaint, apparently she is on holiday and that's why I haven't had a reply from her yet (the practice manager), but she said she has enquired with the locum GP I complained about and I have been "ensured that it is being investigated thoroughly".

My next call is definitely demanding a specialist, it's been going on for too long now, especially the pain, some days I feel about 70... not good for someone as young as I am xxx

[kiisa]

Hi everyone. Just a quick update from me.

I went back to the doctors and they said they wanted to test me for coeliac disease. So I had those blood tests done, it came back negative. Pain still persists, also having yellow loose stools (fat malabsorption maybe?) Also extreme cramping now when I am on the toilet trying to have a bowel movement. The doctor I saw said if this test came back negative, they would refer me to see a specialist...

So called the doctor again today as I am in agony, I've been back to work last night and I've woken up feeling like I've been beaten up. Taken 2 x 30mg cocodamol hoping the pain subsides. Have another appointment tomorrow morning and the person I spoke to on the phone for my triage consultation said he wants me to take yet another urine sample in with me... (this is the 3rd time they will be checking it now, why why why????).

Fingers crossed tomorrow I don't get fobbed off and actually get referred to a specialist.