How much folate is recommended when injecting B12? The folate tablets I have are 400µg.
Also, can anyone kindly comment on my sudden lip problems? I awoke 4 mornings ago to blistered lips, they were slightly worse the next morning. The blistering seems to have stopped but my lips are now swollen and chapped. The only thing I can think that I changed on Wednesday (ie. the day before) is that I took 2 doses of ibuprofen. I haven’t taken ibuprofen since last summer, but I haven’t previously had a reaction. I should add that the last few weeks I’ve been experiencing the driest mouth ever whilst sleeping. I’ve turned the heating off in my bedroom to see if that’s the culprit. I drink plenty and have always taken excellent care of my lips.
In keeping with many of the users on this forum, I have a thyroid problem.
I take 75µg levothyroxine and 9µg liothyronine, currently working to optimise my treatment and recently increased levo dosage to 75 (4ish weeks). Might this be the culprit?
Thank you ever so much.
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J972
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You are taking the recommended dose of folic acid for women of child bearing age and a maintenence dose for others too.
Go by your blood results.
If deficient only then is a short course of a higher doseof folic acid needed.
Keeping the environment better at night helps dry mouth. Bowl of water near heat before bed
I use a essential oil diffuser.
I use thyme in it or lavender both good for throats.
Another member of thr forum was recommended nipple cream for cracked corners of mouth and lips .
Or use vaseline.
Drink water through the night.
Pillow position.
Mouthwashes.
I have no knowledge of thyroid problems but have had oral thrush twice for the first tine ever and lots of dental issues exasperated since b12 deficient .
Use lozenges fir dry throat, coughing fits when haven't got s cold.
I've also got very dry skin and dry itchy scalp.
Maybe s side effect of needing high doses of b12 ....not sure .
I’m not yet taking the folate, I have folate. I was under the impression that you needed to *increase* your supplementation of folate when self injecting with B12.
Already using good quality lip balm but will consider a humidifier. Really looking to uncover the root cause however, rather than treating symptoms.
It's a myth high supplementation of folate is necessary on b12 injections.
Very interesting, thanks. I’m a long time lurker on this forum - I’m normally bothering the thyroid lot - and I’ve got the impression that supplementation with folate was required when SI’ing. I just didn’t know how much.
My folate is within range but not optimal.
I’m aware that a very low or under range folate level can mask a B12 deficiency.
I have been supplementing with sublingual B12 for years so my levels are always elevated, which is unsurprising. Prior to this I had a couple of serum results in the region of 380, so not below range but not optimal. And I have lots of B12 deficiency symptoms, in particular tingling in extremities and muscle twitching. These symptoms are not resolved by thyroid replacement so I’m considering B12 as the possible cause. I’m familiar with the idea of functional B12 deficiency.
Tingling in extremities is a B12 deficiency symptom. B12 needs folate to get absorbed and if you don't supplement, your folate gets depleted and may not process the B12 properly. It all depends on how often you get injections.
I have never heard of this reaction in relation of thyroxine. But what brand of tablets are you taking now your dose has increased?
If it's Teva brand that might be a problem. 75mcg dose tablets aren't made by many manufacturers. Teva Levo causes problems for quite a few of us. It's the filler mannitol that seems to be the problem. And if you happen to be a person who reacts to the Teva brand, then your symptoms could literally be anything! When it causes issues it really goes all out.
I submitted a yellow card for it because it caused me terrible nosebleeds. No medic believed me. But I had almost Never had a nose bleed and certainly not a bad one, until I'd been on Teva Levo for around a week. And then I had a major one that lasted an hour and frightened me to death (husband has been a lifelong sufferer so he was very calming and helpful) and then a series of others for the following 2 weeks until I put 2 + 2 together and stopped the Teva.
No nose bleeds after that, apart from little ones caused by the damaged blood vessels until they healed. I have never heard of anyone else reporting nosebleeds from Teva Levo, so the fact I've not heard of blistered lips does not rule it out.
If you are indeed on Teva, go and talk to your pharmacist, show him what I have written and ask for your prescription to be made up of a 50mcg + a 25mcg tablet to avoid Teva. They should put that on your records. You might then need to ask the GP for a replacement prescription so that you can stop the Teva. It's a Marmite brand. Some people love it, but others of us hate it.
Thanks for the response fancypants, Teva certainly is problematic for some. However, I’m not on teva, I use a pill cutter to divide Eutirox, (100mcg).
I’m working on the theory that the reaction was caused by ibuprofen, which I was taking on the advice of my dr, despite me reminding her that I’m pretty certain that it caused a small internal bleed last summer, requiring an endoscopy. I should’ve known better! I’m wondering whether my body rejected the ibuprofen, after the reaction I had last year. That could of course be completely fanciful 🤷🏻♀️
I was rushed into hospital with blue & white lights near death, with very low B12. After several days of B12 & folic acid infusions ,the Consultant prescribed intramuscular injections of B12 every 8 weeks and 5mg folic acid daily. After 3 months a GP substituted half a 5mg tablet every other day.
Eventually I needed to be on 1mg B12 EOD and after struggling for many months found I also needed to increase the folic acid up to 5mg a day which after almost 6 months has me back functioning. The more I look into it the more I realise that B12 and folate work hand in hand so increases in B12 likely requires more folate.
I have searched and found no research which suggests I now need to reduce the folic acid. Only suggestion was that the anal wind folic acid gifts us might indicate cancer and with me this went away after a couple of weeks. This was sub standard research with no random blind sample and with only a handful of subjects which is nowhere near enough. Hence I am content to continue with it until I either get problems or some quality research is done. The research was done in the USA and there fundamentalist Christians have fought hard to prevent folate supplementation of cereals etc. so this might be why there is some interest there.
My diet is not high in dark green vegetables etc so I am wary of reducing the folic acid. I have tried baked beans in tomato sauce and thats OK yet I can only eat so much before jet propulsion becomes a problem.
Of course we should not supplement folate before looking into B12 deficiency as this may make the B12 diagnosis uncertain.
Thank you for such a comprehensive and considered response. You have had a frightening experience. Did it take the medics long to work out that you were depleted?
It’s interesting that the Christian fundamentalists are opposed to folic acid supplementation, whatever is the basis for their objection? Is it to do with how it’s linked to preventing birth defects?
The tablets I have are 400mcg so just under half 1mg. I might start taking 2 of those daily while I SI every other day for the next 2 weeks. Does that sound a reasonable starting point?
If it were myslef I'd avoid the ibuprofen for a bit. . . . . . I am allergic to aspirin and had anaphylaxis 3 times due to it when I was a young man. . . . . . I mean outright blown up like a balloon could not even see out for swollen face and eyes . . . . . . I was able to take aspirin up until that point. . . . . The very first symptom is my lower lip stating to puff on the inside . . . . . There were spots all over me. . . . . I have managed to avoid such for many years but do know that if I come in contact I can react slightly. . . . . . B12 defiency is generally an autoimmune problem. . . . . Anaphylaxis is also autoimmune so we are very likely to have more than one problem. . . . . You can take B9 at any point after you have been diagnosed with B12 deficiency . . . . . . Taking it prior to tests muck soem of the results up. . . . . . Once you are tested I would not be looking tested again because to get the right results I feel ye need to stop using all supplements for a few weeks and that'd be no fun at all. . . . . You wont find any info but lack of B6 symptoms are similar to B12 and are often alongside B12 def. . . . . . Some would say a B6 def appeared after starting B12 jabs and I'd agree with that. . . . . . . There may also be absorbsion problems with B6 which again may go hand in hand with B12 problems . . . . . Note I have no real bonifide research on this simply because I havnt found any and I mena any either way but I have met a few people who came to the same conclusion between symptoms and a couple had tests. . . . . . Personally my lips had split quite bad for many years and skin problems and weird small acme that like to bleed after starting the b12. . . . . Shaving was horrible. . . . . While I could not say the B6 stopped everything my lips no longer split if I use it. . . . . Skin is much better although there are times my scalp gets itchy but nothing like previous . . . . . Minimal facial spots but an odd one behind ears but this seems to be the norm if I am to get enough B12. . . . . . . I am still experimenting which I take very slowly. . . . . . . . . . Like B12 there is no real proper advice once ye get your blood iron thingys right. . . . . . Once that is done the vast majority of medics walk away. . . . . . They are bound by limitations of their masters. . . . . Limitations that are generally good, just not for B12 or indeed maybe various B vitamins for our needs. . . . . We tend to jump to conclusions and down rabbit holes so gently does it. . . .. . . .
Adding a little bit. . . . . . . If we take a sherlock holmes look into this we can see that there are B1 B6 B9 and B12 all readily available. . . . . . If they are easily available there must be a demand. . . . No one is going to make and package something that goes out of date quite quickly unless there is a good chance of selling the thing. . . . . . Be cautious though. . . .
Thanks for your lengthy response, it’s appreciated. The aspirin reaction sounds horrible and so weird that it can happen seemingly out of the blue. Lots of food for thought 🙏
Any reaction can and will happen out of the blue. . . . . .So be very careful. . . . . . The next time might not be so good. . . . . . Severe reactions are dangerous in mature people. . . . . I dread such and should carry a pen everywhere . . . . . If your systems decides something is foreign then the war starts. . . . There is no stopping it, no time, no warning signs. . . . . By the time you realise something is very wrong it is very wrong. . . . . . Before I'd be taking similar product to which I consumed before my lips blistered I'd be trying very small quantities of everything I had just previous very cautiously . . . . . . . Most people's allergies arrived rather than being born with such. . . . . You could have been eating nuts or fish, whatever say yesterday just fine but today?????. . . . . . I have a cousin who cant even go near anywhere cooking fish and she was near 70 when it happened first. .. . . She was hospitalised. . . .. . .And I might add that I have heard many people say I am allergic to this or that but they know nothing of an allergic reaction. . . . . If you are allergic to something you will have no trouble knowing something is going on although sometimes figuring out just what is was might be a bigger problem. . . . . Your lips were the alarm to me. . . . Dry air etc is very unliekly to cause such a reaction as blistering/swelling. . . . . . Not all things are testable as such. . . . . . . I cant or should not take dairy but I am not allergic to dairy, I just cant digest it. . . . . . . . And it is all related to wonky guts. . . . .
Just remembered that I had a salmon fillet Wednesday evening, the first time I’d had it in yonks and yonks. Breathing completely unaffected, I should add.
It could be anything but as most reactions happen quickly I'd be cautious of the latest last whatever, the last things you consumed . . . . . . To have lip swelling/blisters is very suspicious but not usually the next morning however as this is a common problem some people will say after a major reaction that a few days/weeks before they had a very mild reaction and didnt recognise it as such simply because they never reacted to anything before. . . . . . . . . . . . No one knows how all this works and testing is all well and good but caution will carry you far. . . . . . Crush a tablet/pill and just wet your finger on your tongue and lift a tiny bit of the dust. . . . .Put it below the tongue of inner bottom lip. . . . . . . At least thats how I try things. . . . . . If you are going to react you'll know within minutes usually by your bottom lip. . . . . . But just try very tiny amounts and usually the body doesnt go mad. . . . . . . . Look up images of anaphylaxis to you see what can happen. . . . . . I have not had a bad reaction since I was young man. . . . . . There was not a single area of my body that I didnt feel like tearing my skin off it was so itchy. . . . . . The very soles of my feet and all the tender bits. . . . . . And ye often cant see as your eyes are so swollen Some people skin is a complete mess for life afterwards. . . . . . .And that's the none big danger parts. . . . . . . The throat and airways can swell to dangeous levels. . . . . I could barely drink for 24 hours. . . . . . Last time it happened big time someone rang for help and the ambulance crew stalled the event I presume with adrenalin. . . . . Two time before I was on my own and too late to do anything by the time anyone could help. . . . . . I got antibiotics to try and stop skin infection
So sorry to read of your dry mouth and sore lips - not a great combo!
I have little to add other than to ask if you are supplementing with Vitamin D? I started to get very dry mouth day and night so I stopped vitamin D and within 3-4 days things are improving for me. Just a thought as many potential causes!
Thank you, it’s horrible! I supplement a few days a week with vitamin D and I’m actually planning on retesting it in the next two weeks (home test). Thanks for suggesting that.
I don't supplement with folate at all or I go above range. Everyone's different. I just take vit D and gentle iron, as everything else is in normal range. Although I do put magnesium flakes in my bath, as it helps my psoriasis.
On a much simpler level, reaction to toothpaste containing sodium laurel sulphate can cause those symptoms- dryness and soreness in the mouth, mouth ulcers, sore and cracked lips. I switched to Sensodyne and have had no further problems. Other SLS free toothpastes are available, just be sure to read the label as formulations can vary even within one brand. Hope you find the cause, whatever it is.
Thanks very much. As a precaution, I used a different mouth rinse last night. At bedtime, I slathered my lips in ever-useful Sudacrem and thankfully they seem to be on the mend. I’m thinking it was the ibuprofen.
Hi, I have B12 deficiency and am hyperthyroid possibly hashimotos as my family have it. I have had a problem quenching my thirst and have a dry mouth at night, for a long time. I also suffer from palpitations if I drink alcohol or try to exercise. Recently I tried electrolytes and I'm definitely a lot better. I read somewhere that people with hashimotos had issues with electrolytes. Might be worth a try.
I am currently hyperthyroid, however my family are all hypothyroid. So that and how my thyroid is currently reacting to antithyroid medication, has my endocrinologist thinking that I am in the beginning stages of hashimotos and I will become hypothyroid.
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