New here would like advice

[Lee67]

Hi, last few years been suffering with gastro problems. Loads of tests, nothng. Symptoms, ulcers on tongue. Previously suffered occasional tongue swelling. Forget things often. Really struggle some days with concentration feel like I can't cope. Just been diagnosed with Mortons toe. Blood in 2014: MCV 97.9 and MCHC 318. Recent B12 normal, Vitamin D low, Folate high. Would appreciate thoughts. Sister currently under going test for Chron's and related diseases.

[humanbean]

When my levels of B12 drop I get loads of mouth ulcers. Unfortunately, when I start to raise my B12 the mouth ulcers actually get a lot worse for a while. I have to be really saturated in B12 for there to be a drastic improvement.

Your symptoms could be related to B12 and/or other nutrients. But have you also considered your thyroid may be under-performing? You should join/follow and post asking for advice on the Thyroid UK community :

healthunlocked.com/thyroiduk

[Lee67 in reply to humanbean]

Thanks, thyroid was tested a couple of years ago, was all fine, but am back to doctors in a week, I'll mention it then, hopefully get another test. Thanks for the link, so much to consider!

[humanbean in reply to Lee67]

It's possible your thyroid really is okay. But many people on the Thyroid UK forum like to confirm their results for themselves.

Just as an example :

If your TSH is 6 or 7 or 8 or 9 with a reference range of (0.5 - 5), most doctors will say that is normal. But it isn't. In many countries that would get automatic treatment for hypothyroidism.

Did you know you are entitled to get copies of your test results for the cost of the paper and the ink? You would need to ask at reception and take proof of identity with you.

Even better would be if you could register to see your test results online, but few surgeries offer this service. Eventually they will all have to though.

[Lee67 in reply to humanbean]

Yeah I got a print out in 2014. TSH was 1.9 (0.3 - 5.5) T4 10.4 (9 - 25)

I guess may have changed now I suppose.

[humanbean in reply to Lee67]

Your Free T4 suggested you either had a problem or were rapidly heading for one at the time of the test. It would have been helpful if you had got Free T3 measured, but the NHS hardly ever does this.

It is actually levels of Free T3 which correlate best with symptoms.

Doctors use TSH as a guide to suggest how well someone's thyroid is working. But it isn't very accurate. My TSH never quite reached 6, despite my Free T3 and Free T4 being right at the bottom of the range. I have seen someone posting with Free T4 and Free T3 levels similar to mine but with a TSH which was in the high 20s.

A low TSH with low Free T4 and Free T3 is indicative of either a pituitary problem (secondary hypothyroidism) or a hypothalamus problem(tertiary hypothyroidism), but doctors expect TSH to be rock bottom before they will think of either of those problems.

[Lee67 in reply to humanbean]

Many thanks, hadn't considered it could be a thyroid problem. With the NHS heading the way it is am guessing I'll really be needing to work on my doctor to get the tests done. I'll add it to my list of requests!.

[Lee67]

Thank you for advice will post them when i've picked them up. Was originally told that information on the phone. Then received a text following that phone call saying "no action needed"! partly why I'm going back.

[Gambit62 Administrator]

It would be useful to know exactly what your B12 levels were - the cut of points for the test are such (because people vary a lot with B12) that just using cut offs will result in picking up 5-10% of people who aren't actually deficient but missing 25%+ of those who are.

Crohn's causes absorption problems and can be the cause of a B12 deficiency. Your MCV in 2014 was creeping up to wards the top of the scale which could be indicative of a developing macrocytosis (larger and round red blood cells).

Morton's toe is unlikely to be related to B12 - if it is a definitive diagnosis rather than done just on the basis of the fact that you have been having pain in your feet.

suggest you put together a list of symptoms that coincide with symptoms of B12 deficiency and continue to follow up on a diagnosis of your gastro problems. If your sister gets a diagnosis of Crohn's then you should follow up on that. Coeliac's is another possibility. PA - in the sense of AMAG - is another possibility. Lower stomach acidity is another possibility - PA can cause this but there are other possible reasons.

[Lee67 in reply to Gambit62]

Thanks for your reply, finally got results out of doctor

My Vit D was 17 and was told it should be 50.

My B12 was 295 range between 180-1100

The doctor put me on high suppliament of Vitamin D weekly for 8 weeks. Said B 12 was fine.

She got me to also do a memory test. Which she said was ok.

I gave her full list of symptoms and she requested I try a new stool test. My sister tests are still inconclusive.

My symptoms are an inability to cope. Unable to concentrate, memory loss generally walking around fuzzy. Have odd day where I feel I did ok but feel wiped out the next. Am tired, lethargic and virtually flipping out at the smallest expectation of me. Doc suggested anti depressants and counselling! On and off mild numbness in outer fingers of left hand. Capillaries in joints of fingers seem to break when pulling heavy door handles or if I need to grip hard. Was told I have thick blood by fertility doctor who put me on aspirin, and said I needed to mention to my own Doc. But they said I didn't need It.

Am also now quite possibly hitting menopause.

Am due back next week for stool results

Sent from my iPad

[Gambit62 Administrator in reply to Lee67]

Your b12 may or may not be a problem - its in the grey range.

I'd suggest sorting out the vitamin D deficiency first and see what that does - though I have to admit I don't know how long it takes to correct and for people to feel better.

High folate can mask macrocytosis if your GP is using that as a way of evaluating a potential B12 deficiency. There are some test that look at what is going on at the cell level with B12 - MMA and homocysteine which would be raised if cells don't have enough B12 to recycle them into useful building blocks but it may be quite difficult to get your GP to do them. Suggest that you give the vitD a week or two at least to see if it resolves things ... or some things ... and if it's not resolving things then start to look at B12 - plenty of advice in the pinned posts and materials that you can pass to your GP if necessary.

You have my sympathy on the menopause

[Lee67]

Results of stool came back showing traces of IBD. Symptoms of which are exact to what I am experiencing fatigue foggy and unable to cope. Going back tomorrow hopefully for another chat with doctor.