Pernicious Anaemia Society
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Undiagnosed Health Problems


I posted this on the diabetes community and someone suggested to post up here. I'm just hoping for some advice on my health problems.

I’m a 26 year old female who has just moved to Leeds for a new job.

I’ve had health problems for about 6-7 years and around three years ago I was sent for a lot of tests, including a gastroscopy and colonoscopy, to identify why I was having problems with vertigo, nausea, constant migraines, and fainting spells. The Doctors decided these problems were due to problems with my ears / balance system (causing vertigo and fainting) and my birth control pill (causing migraines, silent migraines and nausea).

In the past year or two I’ve been having the following problems:

- light-headed and feeling faint

- nausea in the morning

- tired all the time

- low energy

- general weakness

- cold, especially in my hands, arms and legs

- aches, especially in my hands, arms and legs

- I sweat excessively

- my eyes go blurry / I struggle to focus on things

- inability to concentrate

- frequent outbursts of vaginal thrush

These generally have improved when I eat something sugary.

However, over the past few weeks I’ve found these symptoms have been much worse. The increase in the severity of the symptoms started when I started to exercise more (zumba and squash once a week + daily walks) and I tried to lower the amount of chocolate and fizzy drinks in my diet and replaced these with fruit, yoghurt and water. I have since retracted back to the old diet, but the symptoms are still severe, and eating sugary food/drink is no longer helping (it used to work as a quick-fix).

I’ve had to take some time off work and the symptoms are often unbearable.

I’ve had blood tests done for diabetes, anemia and other common causes of these problems and they came back negative.

I saw a new Doctor for the results today – I’ve only been at this practice for around 2 months and I’d never seen her before – and she was very unhelpful. She hadn’t read my file, didn’t know about the blood tests, and didn’t listen to much that I said (she kept interrupting me to talk about other things). She said that I need to learn to live with my symptoms and there are no further tests they can do (she listed four and said that if they were fine, I am fine – they were diabetes, anemia, liver function tests, and another I’ve forgotten).

Important info:

- I eat healthily, with the exception of being in the habit of eating sugary foods to prevent these symptoms. I have requested to see a dietician so they can help me lower my sugar intake.

- I’m happy, not overly anxious or stressed. I’ve just started a new job and finally living with my boyfriend & dog in a lovely new house.

- I'm not overweight. I'm a 24.8 on the BMI scale. However, I have been overweight in the past.

- I do also catch "bugs" etc. easily. If someone has a cold or a flu, I generally get it.

Does anyone have any idea what this could be? Should I consider seeing a private GP – are they generally more helpful? Are there any specific tests I could request?

Thank you for any help, I am desperate to find the cause of these problems.

13 Replies

It is really sad that doctors seem to know so little about B12 - your symptoms certainly do seem to fit - one problem is that they confuse B12 deficiency with anaemia though a lot of people can actually have strong clinical signs of B12 without actually being anaemic - more so these days where people's diet tends to contain a lot of folic acid.

When you say you eat healthily - I presume that includes meat and fish, dairy and eggs - B12 is only found in animal products so a diet that doesn't contain any animal products means that you definitely need to supplement.

You could try printing off a list of B12 symptoms and ticking all the ones that apply to you and going back to the doctor with that - though sounds like you would probably be better of trying to see another GP if one is available.


Aside from diet there, B12 deficiency generally occurs because something happens that upsets the rather delicate mechanism by which B12 is absorbed - this could be an autoimmune response (PA) - and that tends to run in families so if there is a family history of PA you should definitely get that tested out. Drug interactions can cause problems - eg treatments for acid reflux, NSAIDs .... Gastric surgery that has affected the ileum is another possibility and then there are changes in your stomach acid levels as you get older (lowering) but that seems unlikely given your age.

Do you know if there is a family history of PA - anyone else in the family on B12 shots. PA shows a high correlation with blue eyes and premature greying so if there is a family history of premature greying that could be an indicator even though nobody has been formally diagnosed.

Unfortunately the test for B12 isn't particularly reliable and significant numbers of people are deficient but show up in the 'normal range' - some suggest normal range is wrong and the lower point should be nearer 450-500 than the 150 that it tends to be at the moment.

Looking at MMA and homocysteine if results are in the grey area can help to pick up an underlying deficiency as both are waste products that build up if the body is low in B12 and/or B9. Both can have quite serious effects.

Both NICE and BCHS guidelines recommend treating on basis of symptoms rather than relying on just test results because of the risk of permanent nerve damage if treatment is delayed. However, the NICE guidelines are also a bit confusing because they are located and to a large extent focused on anaemia

(refer to the summary at beginning)


Thank you, so much.

I went through the symptoms checklist and many of them match. By healthy eating I mean I think it's healthy, generally I have:

- breakfast: porridge

- lunch: sandwich (usually chicken/tuna/ham with salad) and a snack

- dinner: usually chips with meat (chicken or fish usually) with peas; except sundays I have sunday dinner

- supper: small sandwich, toast, or a muller rice.

But I snack a lot on chocolate/fizzy drinks (tried replacing with fruit/yoghurt as described above) throughout the day. My dinner is generally really small - about half a plateful - because I struggle to stomach a lot of food at once, this is why I usually eat dinner and supper.

I'm not sure about PA and whether or not it runs in the family, but I will try and find out.

Is it possible to have PA if you eat healthy, aren't on acid reflex treatments, haven't had gastric surgery, it doesn't run in the family and you stomach acid levels aren't low? Or if they're all fine - is it definitely not this?

Again thank you for all the help!! :)


Hi estellise ,

There are other reasons to be low on B12 such as bacterial infections (candida, which thrives on sugar) and abnormalities in the gut you may not know you have etc; besides the obvious, see:

Also your symptoms could be thyroid related so having a full thyroid panel done would be good,

I hope this helps,

Kind regards,



Hi Marre,

Thank you. This helps - and I do eat too much sugar so something related to that makes sense. You can probably tell that I don't know much about health related things, however I will ask my doctor about thyroid tests and see if that helps!

Thank you!



Does sound as if you could do with a little bit more variety in terms of veg in the diet.

PA is a possible cause of B12 deficiency. There are lots of other potential causes.

PA in it's pure sense is an autoimmune response and I don't think there is anything that says it has to be genetic in origin.

As Marre says - general problems affecting the gut can also have an impact on B12 deficiency because if you have problems absorbing other things then you are likely to have problems absorbing B12 as well.

Was thyroid the 4th thing that the doctor mentioned that you couldn't remember?

There is a lot of overlap between symptoms of B12 and other illnesses and unfortunately having one doesn't mean you don't have more than one.

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Hey Gambit,

Thanks again!

I don't think it was a thyroid test, although I'm not 100% sure. I'm trying to get another appointment this week so I'll ask for those tests. Just to be sure, I need to ask for:

- thyroid panel

- B12 deficiency

Is there anything else I need testing?

On veg - I eat peas during the week and a variety on Sundays. Should I be eating more variety?

Thank you for all the help. :)


Make sure that you get your folate (B9) checked at same time as B12 - they'll probably do that anyway but ... that's because you need B9 in order to metabolise B12 and if your B9 is low then that can also lead to a B12 deficiency, and really a B9 deficiency probably ought to be dealt with before looking at a B12 deciency.

I would mention that you have an uncle on your mother's side who has been diagnosed as having a B12 deficiency to the GP.

On vegetables I know one recommendation that I saw was that you ought to have at least 2 different colours in a meal ... I do think that you would be advised to try for more variety - though I know you say you are eating quite a bit of fruit which should give you a fair amount of folate but you do need to make sure that you get a variety.

Green leaf veg is good for folate and generally iron (though spinach is not good for iron as it actually contains something that stops you absorbing iron) you also need vitamin c to absorb iron and green leaf veg is good for vitamin c.

Potato generally doesn't count towards 5 a day as it is more of a source of carbohydrate. It may also be worth looking at things like nuts as they tend to be good for particular minerals.

Notice that you have posted some family history. Link between blue hair and early greying is a correlation - ie higher numbers of people with B12 deficiency from PA have blue eyes and/or early greying than you would expect from the normal population, but not necessarily a causal relationship.

I personally don't know if I have PA or if my deficiency was for some other reason (and given that there isn't a good test and the treatment is the same I'm not really going to drive myself mad pursuing an exact reason) but there is a long history of early greying on my father's side - both my brother and I have the same - I definitely have issues absorbing B12 and my brother seems to benefit from supplementing with B12 but didn't get checked out formally - mainly because he had huge problems getting his diabetes diagnosed correctly and putting him through the B12 hoops after that seemed a bridge too far.


Thanks again, will add B9 to that list :)

I have carrots in the fridge so I think I'll try adding those to my meals, see if that helps. I have cauliflower in too so can try that as well.

My dad has general problems with health but he rarely goes to a Doctor, he does however take a collection of vitamin supplements everyday although I'm not sure if B12 is one of them.

I just saw your reply to the other post as well. When I first started getting symptoms I'll admit it seemed classic diabetes, however the test has been negative twice now. Although on the more recent test I didn't fast correctly - I had a fizzy drink when I woke up in the middle of the night. The doctor said that wouldn't affect the result though. I might ask them to re-run the test just to be sure.

Generally the Doctors seem reluctant to do lots of tests. Is this normal?


I suspect the answer is yes to reluctance to run tests - tests can be expensive and they are also time consuming - though that shouldn't necessarily be factors that determine treatment in their entirety.


More info on family...

My uncle Peter (on my mums side) has been diagnosed with B12 deficiency, and my dad hasn't been diagnosed with B12 deficiency but he has blue eyes & started greying at 15.

My sister had similar problems a few years back and it turned out she was borderline diabetic and had a small brain tumor.


There is quite a high overlap between some of the symptoms of diabetes and B12D - type 1 diabetes (and a less common form called MODY that develops later in life - runs in my mothers side of the family) are both auto-immune diseases and unfortunately auto-immune seem to come in groups - I'm lucky not to have any problems aside from the B12. Unfortunately GPs tend to find one solution and not delve into other possibilities but just dismiss the idea that it could be anything other than the first condition.

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I went to the doctors today and they're testing me for more things, B12 included. He said that a B9 deficiency was uncommon and he doesn't want to test that, but he said if B12 comes back positive then they'll test for B9. Not sure if this is the right thing, but glad they're now planning on doing a new series of tests.


Seems all good, hopefully you will end up with the right diagnosis and treatment soon! Marre.


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