At last I have found some people who are experiencing some similar symptoms as me. I have not been well for around 30 months with fatigue, more frequent bowel movements (clear discharge in early hours of morning), brain fog, thick phlegm in throat, sromach very noisy, bad wind, muscle loss, hearburn and so on. My doc said no one could have all these symptoms. Colonoscopy, gastroscopy, CT and PET did not reveal anything. Negative for celiacs. Some bloods show something not right
B12 - 164 pg/ml ( now on injections level around 500)
Vitamin D severe deficient at 13, now 50 after daily oral tablets.
Platelets 159 (seems on low side)
Red cell count low 4.07 (4.5-6.5)
Iron 21.8 (11-28)
From memory, folate was a bit low but in range.
Does anyone have any suggestions? I was thinking about stomach acid but surely gastroscopy would have ruled this out and surely it would not have given me so much fatigue?
I appreciate any help.
Thanks
Aaron
Written by
Aarony
To view profiles and participate in discussions please or .
The fatigue you are feeling is likely to be a mixture of the B12 and the vitD deficiency.
I am assuming that you aren't vegan (ie no meat/fish/egg/dairy in diet) which would make it unlikely that the B12 deficiency was dietary ... there are a number of things that can lead to absorption problems - low stomach acidity - with or without the presence of PA is one cause. Other possibilities are surgery affecting the ileum, genetic variations affecting the ileum, h.pylori infection, and a long list of drug interactions.
Its common to have D deficiency with B12 - and its quite common to have D deficiency anyway. Iron level is a bit of a curiosity as that would tend to suggest that there isn't a general absorption problem - unless you are supplementing.
Bit of a curious set of results - did you have a full blood count as well?
The iron was a typo, it should have been 21.8 not 28.1. I agree it is a mystery. The only supplements I am taking is B12 injections and Vit D, as both have come up in range I didn't think that they were the cause of my fatigue. I have had a full blood count done a few times, mean cell volume can be slightly high 101 (80-99), red cell count always a bit low. Platelets always low normal and haemoglobin low end of range. I have been worried about an underlying cancer (small cell lung?) But the length of symptoms and negative imaging makes me think otherwise. I just don't know what to do next?
Macrocytosis is a classic symptom of B12 deficiency - the cells become larger and rounder so they are less efficient at picking up oxygen in the lungs and transferring it to cells where it is needed. The deformed blood cells will only be replaced as old red blood cells die - and the average lifetime of a red blood cell is about 4 months so reversing macrocytosis will take several months so if that has been what has been causing the tiredness then it's going to take a few months - though there are other ways that the body uses B12 that will result in fatigue - such as the effects on the nervous system.
Good that you have got a doctor who seems to be looking into a range of possibilities - always possible that there are several things going on.
Have you looked through the pinned posts and worked through the checklist of symptoms of B12 deficiency.
If you have been on treatment for several months B12 is a strange thing so being in range - meaning there's now lots in your blood - doesn't necessarily mean that the B12 is getting through to the cells where it is needed. What is the exact frequency with which you are receiving shots and where exactly are you blood levels now? Also worth looking at what has happened to your folate levels as the body can get through quite a lot of folate when it's trying to process large amounts of B12, and if it falls then you stop being able to process B12 efficiently.
Best form of folate is from food but lots of us supplement with folic acid.
Thanks for your reply. I have a look around the site and read a post about someone with zolinger Ellison that made me write this post. I have been on B12 and vitimin D for 18 months and respective levels are 60 and 500 now. With the flatulence and Castro issues I was thinking about malabsorption too. The only thing left in my GPs armoury is anti depressants which I have started on, but it just feels like there is something physical causing this. I just can't think of any test left to do. Thyroid was normal.
I will have to dig them out, from memory TSH was about 2.5. I have been tested a few times from two different endos and they documented that the results were normal.
Did you have full tests, including both thyroid antibodies, and did you take the test first thing in the morning?
Over on the thyroid forum they would say that 2.5 may be indicating your thyroid is beginning to struggle a little, but that might be due to an absorption problem. I certainly felt terrible at 2.5. I think you are right about the fat soluble vitamins.
When you say that thyroid function was tested, did you have FT3 and FT4 tests? You really have to raise hell to get them on the NHS, but the Blue Horizon lab offers a range of finger prick tests on a private basis.
I'm concerned this has been overlooked in your case, because you mention yellow colouration around the eyes. I used to have this all over my skin, and even my hair (what was left of it) turned an odd colour. It tends to be particularly noticeable around the eyes. At the time, I'd been languishing on the standard NHS thyroid treatment of levothyroxine (T4) for 20+ years, unaware that I was not converting enough levo to Free T3, the active hormone, or that I had other issues with cellular thyroid metabolism. When FT3 drops too low, the body is also unable to metabolise beta carotene in the diet - though duodenal absorption issues won't help - hence the weird complexion.
Do please get thyroid function tested, then if you need help with interpretation and treatment, post your labs on the Thyroid UK forum. Lots of us are members of both PAS and TUK, so you could try here first if you prefer.
Finally, it's not often understood that declining thyroid function is a risk in both men and women after the mid-forties, though women are more prone. My husband is only a couple of years older than you, and we've recently discovered his thyroid hormone production is poor. His health has been declining for quite a long time.
Hi Hillwoman, I had never heard of a yellow skin connection to thyroid, I was a bit worried about liver issues, but liver function tests were all fine. I had a look at all my thyroid blood results and they in June 16 free T4 was 15 (5.6-22) and TSH was 2.3 with no reference given. When I first got tested in Feb 15 my Free T4 was 18 and TSH 2.9. In Sep I had a free T4 of 12. So all within range. The yellowness has never returned as bad as it did that one day, as I say, it was really bright yellow, it looked almost glowing. On reflection, that was the first sign that something was not right. Hopoe you and yoiu husband keep as well as can be.
There are many papers which point out interaction of thyroid hormones and the liver. In general, low thyroid hormone levels mean that the liver performs less well.
Your TSH result would leave many people with extant hypothyroidism unwell. It's best to get it down to 1 or below.
Do you have the FT3? This is the result which tells us most about thyroid function. If you don't have it, I would really recommend testing as soon as you can. In the meantime, Helvella's link is interesting reading, though your liver functions tests were fine.
I hope you find some answers and feel better soon.
Possibly H.pylori test. D3 needs K2 to remove Calcium from blood to bones and teeth where it belongs.
Thanks Dulaigh, I was tested for H. Pylori in early 2015, nothing evident. A few months ago I looked at starting multivits. One of the things that prompted me was I kept bleeding profusely after blood tests. As my platelets were in normal range I looked at other causes and K2 came up as it helps blood clot. I tried to speak to my GP about this as I began to wonder about me having issues absorbing the fat soluble vitamins A, D, E, K and maybe a connection with B12. My GP made it clear that I won't get any more investigations as he felt everything had been covered. I was a bit disappointed as I paid for a lot of the tests myself from my savings, I am so keen to get a diagnosis. I am sure that one day everything will fall into place and the symptoms will then make sense. I have even been thinking about cancer and paraneoplastic syndromes that can cause malabsorption and other weird things, but that seems a bit rare and the negative PET put a halt on that route. Some days I do wonder if it is psychological but there are some physical signs showing something is out of kilter. I also forgot to say that one of the first things was a marked deterioration in eyesight.
You might try elimination of likely components from your diet in staggered way. GLUTENS, SUGARS, ALCHOHOLS. Eat only wholefoods. I have been trying various B12's, multivits and magnesium. Some improvement after 3 months.
Hi Hulgaigh, I like your thinking and I have tried lots of different diets and cutting things out. A benefit from cutting things out is that I am now teetotal.
Yes, try g free, you could be g sensitive even tho not celiac. It's a real condition.
Little question, your iron is similar to my level my pharmacist said could do with being bit higher, have you had ferritin checked as mine was on the very low end of the range and ive been told it needs to be higher. Might be worth getting it checked xx
For some one on injections 500 isn't that high - so may be that you are being undertreated for the Vit B12 deficieny. Whilst this might be a healthy point for people who aren't receiving shots there are a lot of things that can affect the processing of B12 at the cell level that can be kicked off by injections and a lot of people who are on B12 shots need much higher levels. Mind need to be well over range for me to feel okay now.
Thanks Gambit, I will be seeing the endo again in January, I will make sure that I ask him about this. He did comment that although my Vitamin D is now adequate (59) he though that it was quite low for someone who spends time outdoors and is taking prescription supplements. He didn't suggest increasing the dose though (2 x 800 IU Fultium).
With my gastro issues I am still thinking about a malabsorption problem of some sort but I do recall the gastroenterologist saying iron level was a good indicator of absorption. I know the gastro issues have been there about 2.5 years. I went to my GP 2 years ago and he has ordered lots of tests as you know, it is just frustrating that nothing is revealing, so it must be something unusual. One thing that may or may not be significant is that I had acute appendicitis round about the start of all this. My appendix was removed through a large incision as the surgeon said it was in such a poor state that keyhole was out of the question. I am not sure if a biopsy was ever done on the appendix as I was on holiday when it happened. Surely the event could not have been coincidental. I was feeling ropey for a little while before my appendix saga and definitely was experiencing change in bowel movements for a little while before this. I have only recently had the courage to start posting here as my doctor has said that we have exhausted all lines of investigation. My appointment in Jan with the endo is a follow up. In all the testing one endo found that I had low growth hormone so referred me to a different endo. The new endo retested and said the growth hormone is ok but testosterone a bit low. He has put me on testogel to see how I respond. I still feel terrible after two months of the gel. I think he will recheck my testosterone level in the follow up and see if it has improved. He did say that testosterone would not cause the gastro problems. I did go back to the gastroenterologist he didn't seem interested and said we could redo a colonoscopy but that it would be pointless. All I could say was that I am not going to him to ask for a test I am going to him with my symptoms to get a professional opinion on how we can get to a diagnosis. I was up at 4am again to urinate and once again it was accompanied by bad flatulence and a discharge of clear liquid from the rectum, according to my gastro, this is just one of them things....
Sorry for the diatribe, now I have got started I am on a roll.
'It's one of those things'! I am so tired of hearing that when professionals don't have an answer. If your body starts to suddenly behave in a way that it hasn't before, I think there's a reason. I wonder if it's worth asking to have food allergy testing. I hope you find an answer and I really don't see how antidepressants are supposed to help, unless you find them helpful.
Thank you for responding Withattitude, I am hoping to have an appointment with a dietician who will hopefully look at allergies and intolerances. I had not been to the doctors for about 20 years when all this started happening. I know that it is physical not psychological. From memory, the first thing noticeable was that the skin under my eyes was bright yellow. A stranger pointed this out to me, so it was really evident. I had a look in a mirror and it was so bright, like buttercups. The whites of my eyes were still white, so I felt more relieved. This seemed to disappear of its own accord, but now with hindsight, it was the first physical sign I had (I was feeling tired around this point). As it seemed to fade I ignored it. Another thing I was thinking about around malabsorption has been autonomic neuropathy. I did see a neurologist and it was him that ordered the PET scan. As this was clear he started me on the anti-depressants, he said that it was a type that would slow my gut down. It has had a little impact but I still get the flatulence and clear mucus through the night.
I know I sound like a hypochondriac, and there is an element of anxiety, but this is because I am physically unwell and still trying to get to the bottom of it. I never imagined that people went so long being ill with the doctors just saying that they've tried everything so you need to live with it. To be told that some of the abnormal bloods and my symptoms are just one of these things is unbelievable. The other thing I found strange is being told that I shouldn't look online at things I have no expertise in. I would agree with this if only the experts could do there job and not give up when it gets difficult.
You don't sound like a hypochondriac, you sound like someone with real symptoms who is desperately and intelligently trying to figure them out. Which is also most people on this forum.
You absolutely do not sound like a hypochondriac. If you are then so am I!
I've had more help with my health through seeing a functional medicine practitioner and following a very strict diet.
I really hope you get some decent help. Do take care. My neurologist said to me ' this is not that uncommon', but the best I can offer is pain melds and that you accept this. Well, I think bodies want to be well, so I shall carry on my quest. I wish you the very best.
Aarony,I understand your concerns with your bowls/stomach problems as a young man I suffering with bouts of ulcerative colitis and that eventually stopped several years later,but I then had chronic stomach acid,I had a duodenum ulcer which heald up,and was on omeprazole tablets for several years and I to had an appendix removal which was due to an abscess and same as you major surgery involved which took me 4 months to recover,and then had stomach adhesions' a year later,and more recently I had an internal bleed which was clamped off and was treated for the H pylori bacteria,and omeprazole for the rest of my life,I've not had any blood tests as yet to see why I feel so exhausted,so you've bought some valid and interesting points here,as a child I had my tonsils removed and my adenoids as well,and still suffer with acne at the age of 53 just wondering if you've had any of these are in common with you,thanks
Nice to hear from you CB1963. I am just 3 years younger than you and this spell is the only poor health I have ever had. No tonsils, adenoids, acne or anything. The only thing I can remember from being younger was getting bad heartburn when I was working a night shift. It wasn't bad enough to go to the doctors though. Now the fatigue makes it difficult to get out of bed. Up until my illness I did a fair bit of exercise through cycling. Even though I have tried to keep this up, my muscle loss is quite evident and my legs hurt when cycling up inclines and my shoulders hurt when picking things up. My clothes feel quite loose fitting now, even though my stomach has gained a fair bit of fat.
I was a bit of a fitness fanatic and used to do running every day however I've got peripheral neuropathy which affects my nerve endings pains in my legs and shoulders which makes me feel tired in general I think once your stomach starts playing up it's a life time problem,the medication has caused me to put weight on,alot of people have said taking omeprazole causes long term digestive problems as your body can't absorb certain vitamins so in turn your body isn't running fuel efficiently enough I don't really know much about that and wether your body is not getting enough nutrients and maybe causing your weight loss,so as will all tablets they have side effects and trying to get your problems sorted sounds like your in for the long haul,even a course of steroids maybe on the menu,but I totally sympathize with you and hope you make some head way in the not to distant future.
Hi Arrony. Just had a quick read through your thread and just a quick couple of thoughts.
I agree with Gambit62...your B12 level look quite low considering your are on B12 injections. Did your GP give you six loading doses (1mg Hydroxocobalamin on alternate days) prior to your regular injections. This is usually done to rise B12 levels quickly, the regular injections keep the level maintained. Serum B12 levels need to be 1000 and above for good neurological health and to allow repair to take place. (My levels are always over 2000 and we here of far higher - and high levels will not harm you - contrary to what some GP's mistakenly believe).
And how often do you have your injections?
If you have neurological symptoms, you should be on injections every other day until no further improvement - but just shout if you want more information about that.
And a thought about tests:
Did your GP check your inflammatory markers (C-reactive Protein (CPR) and esenophil sedimentation rate (ESR) - these will not diagnose anything but if they're raised, shows inflammatory response somewhere in the body and warrants further investigation.
Also - does anybody in your family suffer from any autoimmune condition. These tends to run in families. Even if not, it might be worth asking your GP to check your antibodies (ANA etc.) to see if anything autoimmune is going on (gastric symptoms could have autoimmune origin, other than PA).
But perhaps he's already done those tests?
Really thing your GP is a bit naughty, telling you no more tests...and assuming you're depressed because he can't find an answer...he just needs to look harder 😀. (And incidentally, anxiety and depression are recognised symptoms of B12 deficiency - if he wants to go down that route he could try giving you more B12. Like Gambit62, I suspect you may not be getting enough and that more may help).
You sound to me like someone who has definite physical symptoms which may be B12 related...but which should certainly be investigated until a cause is found.
Incidentally, I have symptoms very similar to some you describe (and more besides) and have just been diagnosed with an autoimmune condition). I'm a B12 deficient too, with multiple gastric issues, low ferritin and vitamins etc...
Please don't give up and keep asking questions - you know your body and you know it's not working.
Thank you for responding Foggy. I was initially given the loading doses and now injections every 3 months. I am not sure what tests have been done as initially I just trusted the doctor to do his job. In fact he marked my B12 (164) as normal and it was an endocrinologist that I saw privately that said I needed replenishment of it. ÇRP and ESR were both in normal range. What upset me about the gastroenterologist was the way he made a point of documenting my multitude of symptoms that were most likely related to anxiety. He set the scene for everyone and not given me a fair chance.
Hope you are on the mend, thanks again for contributing.
I am so sorry you are feeling so poorly and not getting the help you need. Many of what you have experienced feels so familiar to most of us. I feel like the others that your b12 of 500 is quite low for someone supplementing with injections. My neurologist wants me to maintain around 1000. When my PA was finally diagnosed after a couple of horrific years it was 85. We struggle to keep it at 1000. Last summer I started exercising after taking a year to heal after diagnosis and some symptoms returned. My b12 levels were 745 so my neuro felt they were ok. I knew they were going down and that was what was causing my return of symptoms. I now supplement additional injections more than my every three weeks if I am exercising. I also take a daily sublingual when I exercise just to give me a little something even though I know it doesn't add a lot.
In regards to the gastro problems, I attempt to be gluten free. It definitely increases my vitamin d count and makes me feel better. I also did not test positive for celiac. However, when I do eat a significant amount of gluten I get that same mucusy bowel problem. I only get it then so I am pretty positive for me it is related to gluten. I am fascinated by the gluten relation to absorption problems. My vitamin d count with supplements would not go into normal range after three years. Three weeks gluten free and I went into normal range. It convinced me!
My husband tells me he knows from my emotions when it is time for my next injection. It definitely does something psychological to you. I am much more irritable and anxious which goes away a day after the injection.
My opinion which has no medical basis is that you aren't at therapeutic levels yet. I think you need to be higher than 500. If I remember correctly from what I read, 500 is the low reference number in Japan so you would be starting injections at that number not stopping them.
I wish you much luck and keep fighting and know that it is a physical illness causing these effects. Let us know how you are!
Thanks for you reply Csnjek, I have just been amazed at how many people have a reduced quality of life with no real diagnosis from doctors. I have had a look at my blood tests and in June 16 free T4 was 15 (5.6-22) and TSH was 2.3 with no reference given. When I first got tested in Feb 15 my Free T4 was 18 and TSH 2.9. In Sep I had a free T4 of 12. So all within range. I was really pleased when my B12 was retested at over 500. I didn't appreciate that this was low for someone on injections. I was off work for quite a bit when I first felt shattered but then realised that this was something long term, so it is a case of keep going on and hoping the illness will just lift.
Your FT4 is only 52% in the range so your thyroid is obviously struggling.
Also there are trillions of receptors in the lining of the gut for T3 - so as your T4 is low then it follows that your FT3 will be too. T3 is the active thyroid hormone needed in every cell of your body and when it is low there is not enough to go around. Rather like spreading a teaspoon of butter on a loaf of bread
I am not a medic - you can click onto my name and read my journey -
Thanks for the responses, they have been really helpful. Is there any reason why T3 isn't measured when they do thyroid tests? I can only find T4 and TSH in my results.
Apologies if someone's already mentioned this (it's a long thread!), but have you had your pancreatic function tested? I saw a gastro who said pancreatic insufficiency is underdiagnosed, and the initial tests are for low vitamin levels and stool samples for digestive analysis. Might not be relevant to you, but worth a thought!
Spacey1, funny you say that. Early on in my illness I had a fecal elastase done to test for pancreatic insufficiency. It should have been over 200, my reading was 160. The gastroenterologist said my level would have no impact but I do take Creon now anyway and have done for over a year with no resolution of my symptoms. I appreciate you responding and maybe I should look again at that area.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Vitamin B 12 low
Hi I'm new to this group low vitamin B9 folate
Hello It has come to my notice that I may be low in vitamin b12.
B12 and teeth/gum issues?
