B12 / folate

[ktan49]

Hi all

Apologies for the long post but here it goes

Symptoms began roughly 13 months ago, initially some visual changes with short term memory but nothing extreme...over the next month or 2 I started having internal tremor like my body is vibrating, concentration issues, can't find words etc. IBS symptoms, sweating , bone and muscle pain, eye floaters, feel drunk 24/7 . Weakness , I feel like in dying ... No exaggeration.. I'm 30 years old and had no health issues before all this. My skin has a pale / yellow tint and I look like crap! Can hardly stay awake through the day and even after 8 hours sleep .. find myself falling asleep sitting up or even reading my phone. In very irritable and feel like I'm living in someone else's body with no mental clarity / thought process. . Shortness of breath and painful chest pains all over . Heart palpitations but hospital ruled out any heart issues. My recent b12 result was 326ng/L and folate was 5ng/L ... Vitamin D is also at 40. Any ideas as people think I'm fine and even gp tried to fob me off with anti depressants!! I have bought some 5mg folic acid to try and raise my level same with vitamin D

[Nackapan]

Hello. I'm 12 months in

What b13 regime are you on?.

What was your initial b12 before treatment. ? I felt better when I got my vit d up from 21 to 73 took 9 months in total as got stuck at 52??

Has the doctor prescribed the 5mg folic acid ? I took 400mcg and my folate rose very quickly.

We all are offered antidepressants! If needed fine but otherwise so dismissive of what's actually going on.

Is your iron leveks okay and ferritin leveks? Have magnesium and pottassium levrks been checked. ?

[ktan49 in reply to Nackapan]

Potassium and magnesium levels are fine, ferritin is on the high side at 422. I haven't started treatment yet as I don't know what exactly is wrong with me and neither does my GP 😭 I've been told that low folate can cause b12 issues so maybe that's my problem... I've had a dodgy gut for couple years so maybe I have some kind of malabsorption going on... Only specialist I've seen is gastroenterologist and hepatologist as they thought it was liver related but a biopsy showed only fatty liver... Despite pale / undigested food in stools! Also have red palms which have developed over the last year. Horrible fuzzy head feeling too

[Nackapan in reply to ktan49]

The trouble is so many symptoms overlap don't they.

My main problem was balance. Migrains. Virtigo. Fatigue. Heaviness on top of head. Cranial nerve pain. Numbness over face. Blocked nose feeling. Tinnitis. Light and noise sensitivity. Legs like lead.

I've had a brain scsn

Normal for age.

Low vit b12 only thing found. 106. only thing that has helped so far is b13 injections.

There is a thing called functional b12 defiency.

So blood readings are within normal range but not getting to cell level. (I think that right. )

Discuss that with your doctor . Try some b12 ??

Sorry you feeling so awful.

[ktan49 in reply to Nackapan]

Thank you for your replies, much appreciated. I'm going to try some b12 injections from Germany I think

[Nackapan in reply to ktan49]

It's safer for your first injection to be done at the doctors. Ask if they will give you a trial.

List your symptoms ect

I only say this as a doctor always has to be in the building when b12 injections are done by the nurse or health worker. It's possible for some to have anaphylactic shock.

Have you tried sublinguals or tablets?

[ktan49 in reply to Nackapan]

I'm thinking if its due to something like Crohn's or colitis then tablets wouldn't get absorbed in the gut? Not sure about sublinguals

[Nackapan in reply to ktan49]

If you've had your bloods done for b12 ect . You could try as otherwise you won't know if they make a difference or not or indeed get absorbed. Do you eat liver with vitamin C or other good food sources. . ?

[Sita505USA in reply to ktan49]

I had a pharmacist teach me how to do my first injection and have done it on my own at home since then. There are UTube videos that are very helpful. The folks here are more knowledgeable than any doctor I have spoken to, so stay close and ask questions. I hope you feel better soon!

[Woolyhead in reply to Nackapan]

Around the same time, earlier this year I was Diagnosed with Giant Cell Arteritis, Polymyalgia Rheumatica and Folate Deficiency. To sort out which symptom belonged to which illness was a nightmare, especially with a doctor who didn't appear to have a clue about any of them. I learned more from HealthUnlocked than my doctor. The doctor was blaming everything on the PMR until I asked for a blood test for anaemia which showed folate deficiency. Four months later I'm more or less back to my old self. Anaemia in general is awful It's not just feeling tired as most members of the public think, including myself before I was struck down with folate deficiency, It was so bad I thought I was going to die. Incidentally, the same Doctor had my daughter on antidepressants for three year, which weren't working. In the end the nurse practitioner worked out it was B12 deficiency.

[ktan49 in reply to Woolyhead]

Thank you for your reply... May I ask what symptoms you experienced with folate deficiency and what was your level? Thank you

[Woolyhead in reply to ktan49]

Sorry I can't remember the level off hand. I was very ill at the time. I was asleep most of the time extreme fatigue, getting dressed was exhausting. I wouldn't drive because I had a feeling of unreality. Couldn't go shopping I was frightened of fainting in the shop because of dizzy spells. I used to wake up shivering despite sweating. Absolutely dreadful. I'd end up crying with despair.

[ktan49 in reply to Woolyhead]

I'm so sorry you went through that. I also stopped going shipping etc as the dizzy spells scared the life out of me.. haven't had any dizzy spells for a while but I now permanently feel drunk / off balance. . Did you feel like you was almost living life through someone else's eyes ? Weird to explain but just feel separated from reality ..

[Woolyhead in reply to ktan49]

At the time I’d been just diagnosed with Polymyalgia Rheumatica, PMR. it was difficult to separate the PMR symptoms from anything else. My doctor put everything down to the PMR but reading about that, although people were suffering fatigue, mine seemed to be much deeper. I could barely wake up, anything I did manage to do would leave me exhausted, I couldn’t go out, couldn’t speak to anyone, crying, a sense of unreality. Not like me at all. I really thought at the time I was dying, as did my family but didn’t say so. I managed to drag myself to the doctor’s to ask for a blood test for anaemia. I came back folate deficiency. Three months of folic acid seemed to bring me back to reality. Five months later, I’m still not 100%, but I have started driving again, though not far, can go into small shops on my own but larger shops not confident in and always go with someone else. I’m still taking folic acid but seem to have lost confidence in myself. I think a lot of how I feel now could be in my mind all i can say I’m not the person I was before.

[Dg54vuf in reply to ktan49]

Hi ktan49, when I was first diagnosed my b12 level was 84, my doctor said she didn’t know how I was functioning. That was years ago but I still remember, apart from all the other symptoms, that feeling of not really being there, so I sympathise with you and hope you get it sorted soon.

[ling in reply to Woolyhead]

Thank you very much for sharing re symptoms of folate deficiency.

Could you share more regarding your anemia symptoms?

Thank you

[Nackapan]

That's meant to read b12!!

I'm sorry you feel so ill

I'm in the dark as so light sensitive still.

Have you seen any specialists or had any scans?

[EllieMayNot]

I have PA but my blood tests always showed "normal" B12 levels which kept me from getting properly diagnosed for far too long. Have they tested your methylmalonic acid and homocysteine levels? How about antibodies for parietal cells and intrinsic factor? While none of these tests is perfect, they are what eventually proved my PA and got me on the injections I so very badly needed. Without these tests, I'd still be on the fast track to greater neurological damage. Even if your tests come back as "normal", like Nackapan said, you can request a trial of injections to see if they work. If not, your plan to self inject might be a good choice. You seem to have very many neuro symptoms and you are still so young, you have a lot of living to do!

My 40 year old niece was getting terribly ill with very many neuro symptoms and absolute exhaustion. She started B12 injections and after just two weeks said she feels like a whole new person! No wonder so many other countries sell it over the counter, it simply works!

[JojoElizabeth in reply to EllieMayNot]

Hello, Ellie can I ask if you ever suffered with hand and shoulder pain? I have low folate and have extremely sore shoulders and hands

[EllieMayNot in reply to JojoElizabeth]

I do but I have pretty bad arthritis so I am pretty sure that the arthritis is the cause of my pain. Hope you find the right answers to your health issues.

[Wwerty]

Omg you have just described my life😢 I’m going through the exact same thing, the drunk ness is horrible, I’ve recently been diagnosed with hypothyroidism and dr keeps saying it’s all to do with that, I’ve been practically housebound for 3 months and this weekend has been the worst, I’ve had to just lay down as every time I try doing anything I just feel faint, I was going to order private blood test to check active b12, sorry you are going through this and I hope you feel better soon 😢

[Ryaan]

I would get a copy of the latest blood results from your doctor and post it on here to see what range each vitamin etc should be in.

Even though your B12 is within range you can still have symptoms but I would do the above first and you’ll get better advice on here.

From personal experience if you don’t have any other health issues Low B12, Folate, Ferritin and Vitamin D can mess you up pretty bad and make you feel like that.

I would post the results on here.

(Your doctor has to provide you a copy of blood results if you ask).

That is the first step and best advice.

[JojoElizabeth]

Hi Ktan I have low folic acid and I’ve been experiencing shoulder pain and hand pain. Just wondering if you’ve experienced this?

[ktan49 in reply to JojoElizabeth]

Hiya, I certainly do but not sure if it's linked to my gallbladder or not.. do you suffer any other symptoms with low folate? I feel like I'm on deaths door in someone else's body...

[JojoElizabeth in reply to ktan49]

I suffer from pins and needles, painful hands and shoulders- extremely tired all the time and also eye floaters and forgetfulness. I’m going back the doctors tomorrow about the shoulder pain and hand pain as I’m worried it’s something more sinister like rheumatoid arthritis 🙁