Update, Please sir, can I some more?

Had a bit of bad week, doctors on Tuesday armed with my printed off papers, ready to plead my case. Talk about brick wall, just scanned over my ammo as though it wasn't relevant at all! Quick update of my case: diagnosed before Xmas, loading doses granted, but still suffering brain fog and pins and needles. Macrocytic aneamia, low ferritin, low folate and of course low B12. Told him that I was sick of feeling like an old lady, mentally and physically! My B12 results were brought up on screen, not one, in the last six tests were above 270! Presuming I've had one maybe two tests a year it's been low for a while. Last test: 152ng/L (170-730). I mentioned that my lips sore again, angular cheilitis, had cropped up again, had it on and off for ten years! (Corner of mouth cracked, fungal, mostly due to vitamin/iron deficiency). Only got diagnosed when I mentioned to the dentist years ago that I must have an allergic reaction to the toothpaste (whitening) that I was using. No, she tells me, your probably anaemic or have vit def. Anyway he decides on Tuesday that he will take bloods, check for vit.D deficiency and Thyroid (mother, auntie and gran have under active). Thyroid, thankfully okay, but Vit D 12nmol/L (50-250). I have done a little research, and low vit D also can cause 'the fog' which I didn't realise! Still reading? Thanks!

Anyway, the out come is that he has referred me to a gastrologist, to find out what the absorption problem could be. Does anyone have any thoughts on sunbeds? I know that it is UVB light that is needed, rather than UVA, summer seems a long way away! Annoyed that he ignored my evidence of more often vit b12 for neurological symptoms, but Also my folate so low I questioned the dose I was taking, that I bought myself! 1.7ug/L (3-23) 'oh yes, 400 is right for a maintaining dose' well I take more than that!

Just before I end my 'essay' the other night I was that tired, when I felt a spider crawl across my forehead, when in bed, I just snuggled down, covering my mouth and ears,of course! At one time- jump up, light on, bed pulled out, glass in one hand and magazine in the other, too tired now! Lol!

Thanks for reading.

20 Replies

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  • Only us owls up now. I'm sure you will get some good advice tomorrow.

  • Yes had a lovely, lazy lie in yesterday, and today. Husband can't believe how much I sleep!

  • Lets hope there's a Dickens of a "Twist" to this story :)

    Seriously though, apart from sunshine (what's that?) the other natural source of Vitamin D is from the same animal foods from which we get Vitamin B12 so it's likely that if our diet is lacking in them we could well be deficient in both.

    It's good that you have your eye on your Folate level as this is essential to process the B12.

    I wish you well

  • "Thyroid, thankfully okay,"

    I have read that some people can experience symptoms of thyroid disease with levels that are within normal range. Might be worth posting actual results on the Thyroid Uk forum on HU.

    Which thyroid tests did you have?

    There are various possible thyroid tests but think in UK its sometimes only TSH that is done which does not always give a complete picture.

    Link below to Thyroid tests.

    thyroiduk.org.uk/tuk/testin...

  • Yes, sorry but it's true. You now have to read both sites and these conditions are often intertwined. You get great advice on here so follow.

    Doctors!! I dispair what is the matter with them, a disgrace so often we hear these stories on here.

    Good luck to you and keep your spirits up.

  • Thanks, think I had the bog standard, probably the cheapest test, even though I requested the full test! I have my results so I will post them.

  • You need treating for vitamin D deficiency and further treatment for B12 deficiency. As you had neurological symptoms they should continue treating until they improve. What's your gp going to do about it? Insist you get proper treatment. Print of the b12 guidelines and highlight the relevant sections and put in front of gp! Or ask to speak to the practice manager so they can explain why the gp is not following the treatment guidelines. I'd suggest you research and seek help from the B12 support groups.

  • Took a print out of the guidelines, he glanced over them! As I looked at my results on line the message was:prescription to pick up. So I presume it will be the vitamin D.

  • As others have said diagnosing a thyroid problem from just the TSH test is almost impossible. The Tests you need are :- TSH - FT4 - FT3 and Thyroid Anti-bodies TPO and Tg. Due to costs Labs are reluctant to do the FULL profile when the TSH is in range.

    You could have a Finger Prick Testing Kit sent to your home from Blue Horizon - details below ....

    thyroiduk.org.uk/tuk/testin...

    Many people use this facility and with great success.

    B12 Deficiency along with other vitamin and mineral deficiencies go hand in hand with low thyroid as the ability to absorb well is affected and the stomach acid is reduced.

    You are legally entitled to have copies of all test results - which is a good habit to get into. You can then check to see if they have missed anything over the years ( it often happens believe me ! ) and also helps when you are posting. Do not accept normal :-) - you need the actual figures and their ranges. They say normal when they mean in range - it is where you are in the range that is so important when it comes to thyroid etc......

  • Thanks, yes I have the figures, I'm so annoyed though, my B12 levels have been so low on previous results. I now can look on line and I snap shot them as the results disappear after so long. Looks like I had the bog standard test. Do you know whether the gastro doctor will be of any use to me?

  • Am not sure he would become involved in the Thyroid. As I see it - one of the problems with medicine today - is the fact that they stay in their little boxes and only deal with their speciality :-)

    You can obtain private testing in the home - from Blue Horizon - Thyroid Profile 11 is the most popular one on the TUK forum ....

    thyroiduk.org.uk/tuk/testin...

    Happy to help :-)

  • Thanks, I've just posted my results on the thyroid forum, hopefully someone will respond. May end up going down the private route, even though we shouldn't have to!

  • potential absorption problems can be caused by PA, low stomach acidity (reasons could include PA), Coeliac's and Crohn's, h pylori infection (which is treatable, so doesn't mean injections for life).

    With the symptoms you have your GP should not be leaving starting treatment until after you have a diagnosis of the absorption problem.

    You will also need the folate deficiency and the vit D treated - folate should be started 24-48 hours after B12 starts.

    Sun bed may or may not help with the Vit D though normal treatment is high dose orally.

  • Thanks for responding, I've had a coeliac test, negative, IF the same. I think he is trying to find the problem rather than treating my symptoms as there are now! So frustrating when your aching all over and can't even think straight.

  • even more so when you know that the IFA test gives false negatives about 50% of the time - so coming back negative doesn't rule out PA as the absorption problem

  • Yes, I have thought about that, I had a big dose of vitamin D last year so I was surprised to see it so low again. As it seems to be an absorption problem will this next batch make a difference? Have toyed with the idea of rubbing it on my skin if it comes in capsules again, could that work? Clutching at straws again?

  • doubt skin is going to be a particularly efficient way of getting B12 into you - though some people do seem to find skin patches useful.

    Personally I tend to use nasal sprays a lot - but do also self-inject ... in between amounts that I get from GP - think I'm overdue a shot - because I just seem to be at the ridiculously high end of needing to top-up.

  • I meant the vitamin D...lol

  • doubt skin is going to be much use for that either :)

    hope you do get to the bottom of absorption problems -

  • Besides the mthfr, etc (Yasko) genes about which there is a lot debate, other proven genetic errors include tcn2 (transcobalamin does not provide transport into cell), tcn1, mmache, fut2, cblb, and others. These prevent absorption, block co factors, etc. Good luck if your doctor won't treat without discovering a cause. Some of these require really sophisticated analysis by research scientists in the genetics field.

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