After I got my blood tests done on Monday I started to take the folic acid tablets I bought, 5mg ones, one per day. My plasma folate level was just in range ( 5ng/mL [4 - 20] - purkiss.com/blood_test_resu... ) but from what I was reading it needs to be at 15 for the B12 to 'work' properly so I thought this would boost it up.
Now a few days later I've developed brown marks on my upper lip and it feels weird. I'm going to stop taking the folic acid, but it could also be the different food I'm eating now I've given up the gluten again, although that's hard as even the bag of mixed seeds I have from the health shop says "packed in a facility along with wheat and gluten products" - so hard to get gluten-free!!
Anyway was wondering whether this was anything recognisable by others so thought I'd post, hope y'all doing as well as can be, just done my 15th daily injection of B12 in a row so getting there I think, at least I can focus for longer than a few seconds now, although if I do anything like go shopping or stress out about anything my B12 runs out very quickly!
Oh I forgot, the other things I've started taking are a tesco 1000mg cod liver oil which says it has vitamin D and a couple of freebies my dad got delivered - a Vitamin B Complex and a Multivitamin, both which say provide 100%RDA but neither says iron. Think I'll stop taking those again too, just in case.
Hi Stevepurkis. Another potential cause for brown spots on the lips...
Angular Cheilitis - can results in dry, cracked inflamed lips, with cracking in the corners. Pot ntislly cuased by B12 deficiency (and other B vitamin deficiencies) and can cause dark brown patches or spots on the lips if it’s been present for a while. This is not 'risky' and is fairly common...if that is the cause.
However, if there is irregular colour pigmentation, the lips become scaly, crusted, or bleed, then this should be looked st by a GP.
Might also be a good idea to take occasional photos so you can see if the size or shape is changing - and if the size increases (or you have any of the changes above), then get you GP to take a look.
About the iron - note that the results you posted don’t mention ferritin or a full iron panel (but perhaps you have these results elsewhere?). If not already done, good idea to ask for them so that you can get a picture of iron status (full iron panel is best for showing true iron status).
Also note your July blood tests show a raised ESR (inflammatory marker). Can be caused by macrocyclic anaemia (which you had then), but there are also other causes. Did your GP mention this? Can also be the result of inflammatory activity in the body (or infection et al) so, if symptoms persist, may be worth repeating this and investigating further, if still raised.
Agree with Hidden about the folic acid...400mcg should be enough for most people...and many manage to get sufficient folate through diet, so don’t need extra supplements.
Supplementing with vitamins can be a bit of a minefield, especially it they’re not needed in the first place (and it’s always difficult to know because getting GP's to test levels is not always easy). B6, in particular, is one to take care with - it’s neurotoxic and over supplementation can result in neurological symptoms/damage if used in excess over a period of time 😖.
If you could get all your vitamin levels tested this would give you an idea what the base-line is, and what (if anything) it would be beneficial to take (bearing in mind that if you are low in anything, supplementation would perhaps be an interim measure until levels are raised sufficiently). If you have an absorption problem, you would have to keep an eye on levels occasionally to make sure that things aren't dropping off again.
Thanks Foggyme - yeah I'm definitely stopping the folic acid, read about the neuro symptoms and definitely feeling crappy today, and was quite paranoid earlier - this is the fourth day of those so no more! Also gonna stop taking the others for the moment just in case. Main thing is I'm getting my B12!
Just got a call from the surgery saying my results were in and I've a Vitamin D deficiency and doctor said to book an appointment which I already have for next Wednesday, going to pop down this afternoon and get a printout of them so I can post here first, rather than go in unprepared. Doc didn't even put me up for any blood tests in the first place, was me that asked for them. She said she'd sent a letter to the haematologist but heard nothing back from that, and the ENT guy she sent me to the other day was a joke, just put his hands on my neck and said all was fine - didn't realise medical training and diagnosis was that easy!
Hi Stevepurkiss. Ah ha...vitamin D deficiency can make you feel quite ill...difficulty thinking clearly, fatigue, bone pain, muscle weakness...to name just some of the symptoms.
Here’s one site where you can get more information:
It also tells how to work out dosage based on current vitamin D levels (some GP's don’t prescribe high enough doses to address the deficiency adequately).
Based on your other proven deficiencies, it might be a good time to discuss the issue of potential absorption problems...and get her to test iron...and any other vitamin levels you can get her to do 😉.
Thanks Foggyme - wow at 14 ng/ml if I calculated correctly and 17.5stone which is 1.6 times the weight they use on the calculations, I need 8,000 IU daily just to feel normal (50 ng/ml), 16,000 IU to get 70 ng/ml.
So I got my results, will do a new post in a bit when had some 'lunch' (it being 3pm already lol!):
B12 just says > 1500pg/mL which is not surprising seen as I'd been injecting daily but now I know the Vitamin D is low that's probs the cause of the exhaustion.
Folate - 16 ng/mL [4.0 - 20.0] - it was 5 last time so maybe the few folic acid tablets I took increased that, I dunno, I only took about three and stopped about four days before the tests, and although they were 5mg I though you peed it out!
Ferritin - 145 ug/L [24.0 - 336.0]
TSH 0.88 mu/L [0.3 - 5.6]
Serum total 25-hydroxy vitamin D - Below range - 35 nmo/L [40.0 - 250.0] Comment: "Advise patient that they treat with over the counter supplements"
I did read this on the FB forum & identified with the symptoms of adrenal fatigue due to stress & stuff! ~ "All doctors only check the storage Vitamin D (25-Hydroxy) but not the active Vitamin D(1,25 Hydroxy) they never check. My storage is low at 21.6 but my active is high at 76.5 due to Vitamin D3. It caused my adrenal fatigue."
Free T4 - 12.0 pmo/L [6.3 - 14.0]
IgA 0.3 u/mL [0.0 - 6.9] - am not eating gluten anyway so presume this was pointless
Doc didn't say anything about immunoglobins being below low reference limit, just about the Vitamin D but I did read this:
"In a Chinese study, researchers looked at vitamin D and autoimmune thyroid disease status in their patients. Their study evaluated 66 patients (34 had Hashimoto’s disease and 32 had Graves’ disease), compared to 52 healthy controls. They measured the serum D3, calcium, parathyroid hormone, Free T3, Free T4, Thyroid Stimulating Hormone (TSH), Thyroid Peroxidase Antibodies (TPOAb), and Thyroglobulin Antibodies (TgAb) in all the patients studied.
They found that the patients with autoimmune thyroid disease had Vitamin D3 levels that were significantly lower than the controls. And, interestingly, almost 82% of the autoimmune thyroid disease patients had low Vitamin D. The study defined low Vitamin D as a level of less than 20 ng/ml. The patients who had especially high TPO antibodies — above 1300 — showed significantly lower Vitamin D3 levels.
The researchers concluded that vitamin D deficiency was associated with higher TPO antibodies in autoimmune thyroid patients. This suggests that vitamin D insufficiency may be linked to or in part caused by autoimmune thyroid disease."
Thanks, did ask for them to test Iron but didn't see a result for that. Had lethargy issues throughout early childhood and beyond including quite a few mental issues so that's why my thinking was wheat/gluten->thyroid->B12, i.e. one caused the other which eventually caused the B12d.
Last Q - any particular 'other vitamins' I should ask to be tested for?
Hi Foggyme thought I'd give a post-Dr appt update! All went pretty much text-book, I said doesn't she see a link between the B12 deficiency and the Vitamin D deficiency and she said no they're different thing you get Vitamin D from the sun & it's been summer (which I went out a fair amount in, enough to have a nice tan!).
Anyway I managed to extract some more tests which are booked in for October 31:
- Iron Studies
- TIBC
- Ferritin
- Magnesium
- Zinc (orange)
She said they wouldn't do magnesium and I asked why she said because other tests weren't sufficient to warrant it so I asked again and she said well she'll put it down and see. I asked for Red Blood Cell Magnesium as I read that:
"“A serum test for magnesium is actually worse than ineffective, because a test result that is within normal limits lends a false sense of security about the status of the mineral in the body. It also explains why doctors don’t recognise magnesium deficiency; they assume serum magnesium levels are an accurate measure of all the magnesium in the body.” Dr. Carolyn Dean from ’The Magnesium Miracle’"
...she said that was "a bit technical" so there's just magnesium written down on the sheet but I'll ask again when I see the nurse to see if she can put "RBC" on it. Worth a try.
She said potassium was fine I said well yes I've been supplementing with bananas, coconut water, sweet potato and avocados (well I had that week, can't afford any more right now!). So no potassium test.
She prescribed me 20,000 UI of Vitamin D twice a week and gave me another sheet for a calcium blood test in 3 months because apparently supplementing the Vit D could cause calcium issues. I got the "Vitamin K2 and the Calcium paradox" so reading up more on that.
Then I waited ages for the prescription at the pharmacy and the woman came out and said well it would be cheaper not on prescription and I said yeah I've been looking on Amazon so would sort it out myself, which I feel better about anyway as want to make sure I'm not getting anything with gluten in too. Also I read to potentially look for "Dry Vitamin D" as it's easier to absorb:
boydsfoolishrose said:
"Try taking what's called Dry Vitamin D. It's easier to absorb"
From the link you gave me and calculating for my weight (17.5 stone) I need 10,000 UI - 16,000 UI per day of Vitamin D - by the looks of what's available there's a couple of 4,000 UI & 5,000 UI on Amazon and higher ones from more expensive suppliers - yourhealthbasket.co.uk/inde... - this supplier is funnily enough only 3 miles away from where I am currently living lol! They do a lot higher but I also read you have to be careful taking over 20,000 UI per day for prolonged periods, but I thought perhaps 3 x 5,000UI per day, morning noon and evening could be a good idea.
Here's hoping the Vit D will keep me going - just did my 20th daily SI of B12 - I'm thinking about dropping to every other day or even potentially less now, at the moment I still "run out" when stressed or do "too much" - didn't finish cooking dinner (veg curry) till 9.30pm last night and was sweating like hell, thinking crazy stuff and laughing at myself cos now I know what it is lol! But yes, I do think I have an absorption issue. Trying to remember my cider vinegar before meals, had it in my warm lemon this morning which made it a bit more palatable!
Thanks again for all your help, getting there!!
Oh, and still no word from the haematologist she said she wrote to - even though the guidelines say this whole thing was supposed to be assisted by one. Don't think she realised how much the daily SI helped, I think she miraculously thinks her 5 jabs would've helped me be as 'well' as I am now, which is much better than a couple of weeks ago but still only lasting half a day really before walking & stuff becomes tough going.
Oh and she said the coeliac thing was ok and I explained I'd now given up gluten again - that's really helped with the mental issues. Told her this was a life-long thing, all the issues I had as a kid, I think one or two of the stories I told her may have got through a bit but as she quite rightly said she's not an expert in this area.
I'm just happy I know a lot more about what I need to 'level' myself out enough to get on with some business so can hopefully move out soon and get back on with my life - just doing a little project at the moment helping Maori women prisoners learn how to weave!! Would love to get to NZ for a few months, fingers crossed. That would be nice.
in reply to
Ah just discovered the Vitamin D FB group which has some good advice re plans so won't be doing the 3 per day but one per 'big' meal with fat. So much still to learn...!
Hi stevepurkis. Pleased you managed to get some extra tests and also some vitamin D. Not heard of dry vitamin D so I'll have to read up on that 😉.
Good to hear that you’re starting to feel a bit better but it does take a while, especially if you’ve been deficient for a while. And having the vitamin D deficiency won't help.
So...just take it steady for a while and give your body time to heal.
NZ activities and a potential trip...something good to aim for...so fingers crossed for that.
Thanks yeah I think I'm overestimating my abilities a bit, kinda guess it's gonna take a while. Glad I'm not having to wait a month for my next jab lol - f that sh.
I'm a little worried SI daily B12 isn't doing much, seems to 'run out' half way through the day but waiting for the imminent arrival of some softgel Vit D gonna take 10000UI of that a day and see how it goes. Brain fog and short-term memory issues creeping back in but I think that's because I'm doing more.
Wasn't sure whether to slow down to every other day or less, or whether to keep daily. Guess need to do more research! Got more blood tests at end of month so hopefully once they're done I can finally work out all the cofactors I need.
Hi stevepurkiss. Many people here report that they have to inject daily (or even twice daily) to stay well...injecting daily wont hurt you...and if you’re running out and then feel better once you’ve had another jab, it’s likely that you need that much B12 at the moment.
People usually only reduce the frequency of injections once they can do so without symptoms coming back.
Perhaps best to pace yourself too...stop 'doing' before you run out (but this is from someone who's not very good at that 😉).
And perhaps reassess once you’ve got some vitamin D on board.
Thank you Hidden . Please note - angular cheilitis can present with brown patches on the lips - the brown patches can be present after any cracking to the corners of the lips, dryness or splitting has resolved.
This forum is not a replacement for medical advice (or diagnosis) and users are advised to take appropriate medical advice - as outlined in my post above.
Note: vitamin K2 should only be taken on medical advice in the presence of cystic fibrosis and disease affecting the pancreas or liver.
Vitamin K2 also increases blood clotting time so should not be used unless prescribed by a medical professional, when taking blood thinners (warfarin etc.), in the presence of blood disorders, with a previous history of deep vein thrombosis, pulmonary emblolism, or stroke etc.
Thanks Hidden & Foggyme - the lips are much better today - I do feel it's cos I was taking way too much folic acid. It might be the seed mix I ate which was the only new thing I introduced this week to my diet but should be ok, shedloads of folic acid is more likely than a few seeds I reckon, we'll see when I eat more seeds - not trying more folic acid lol!
Just updating here for any future searchers - was definitely the folic acid as been eating the seed mix and everything else and the lip issue completely disappeared once I stopped the folic acid!
I've tried taking methylfolate 400mcg, twice now. That stuff does not agree with me at all. Whole body felt really odd for several days each time. Last time I took it, I got a sore spot on the back of my tongue that went away a few days later. Just got my results yesterday and my folic acid levels were perfectly normal. Don't understand how exactly as I very rarely eat foods high in folate, according to my food journal. My body must be a hoarder. haha
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