One fed up person

[herbierownay00]

Hi had b12 deficiency for years now I’m so fed up I’m all done in have ran out of answers for so many symptoms can do this anymore 😴😴😴

[pvanderaa]

Don’t give up. Let us know some background. Are you on injections? Self injecting?

Do you take Folic acid and a daily multivitamin to support the B12 injections?

Have you tried going gluten and dairy free in your diet?

[herbierownay00 in reply to pvanderaa]

I’m just fed up of all the symptoms I sometimes think to myself I’m imagining them all so I can’t tell anyone anymore gps don’t even care pain clinic are slightly more understanding I have permanent nerve damage as I didn’t get diagnosed early enough also other health problems under active thyroid and now prolapsed discs in lower spine and partially broken one in spinal canal just feeling sorry for myself atm worse people than me just want it to end 😴

[herbierownay00 in reply to pvanderaa]

No haven’t tried gluten and dairy free but will try I will try anything atm as beginning to feel I can’t cope only I can end all the pain 😔😔😔

[The_will_of_Jill in reply to herbierownay00]

please don’t give up herbierownay00 I understand how you feel.

[Nackapan]

Yes give some more info.

The down times are very hard to deal with especially this time of year.

I thought I'd be getting some of my life back by now. Better than last Chrismas though🎄

[herbierownay00 in reply to Nackapan]

Have so many health issues atm I’m just a bit overwhelmed with it all and need it to stop 😴

[herbierownay00 in reply to herbierownay00]

Feeling sorry for myself that’s all there are a lot worse people than me so many health issues 😴

[Nackapan in reply to herbierownay00]

Yes but that doesn't help. Its normal to feel overwhelmed. Do you have PA?

Hooe toh have someone you csn talk toyr feelings through with TC

[herbierownay00 in reply to Nackapan]

Bit confused about the letters in your message or am I just being thick and stupid as well 😴

[waveylines in reply to herbierownay00]

Am so sorry to hear you had a late diagnosis re your b12 level. How often are you getting b12 injections now? I appreciate you have nerve damage but overtime it can improve with treatment. Pain is a horrible thing to have to live with & understandably you sound like you feel really depressed. There are some really knowledgeable people on this site who can help so can you tell us a bit more sbout what is going on?

[herbierownay00 in reply to waveylines]

Hi sorry I feel like I’m just moaning and I know this site is not for that . I have had b12 deficiency for about 17 years monthly injections but I feel that’s not enough but I feel like the gp doesn’t really think the symptoms are real and just dismissed but my other health issues don’t help at all spinal problems and under active thyroid I’m so confused about what illness is causing what symptoms x

[CapeMayniac in reply to herbierownay00]

For perspective, my primary doc agreed to once a week injections with a b-12 solution she had delivered to my home. I asked the help of a doctor in my family, ordered syringes online and taught myself to do my own injections- every 36 hours! If you're like me, monthly injections will do nothing. Be your own advocate and insist on being heard. My primary doc now knows I am injecting myself and has agreed to give me refills as needed and asked me not to tell her that I am not following her instructions so she won't be to blame. I feel about 80% better than before. Dont give up, your life can be much, much better!

[Nackapan in reply to herbierownay00]

Correction

Have you someone you can talk your feelings through with?

I do many typos due to head sizzling and hurting and vision up and down.TC short for Take care

[herbierownay00 in reply to Nackapan]

Sorry I have same problems too now I understand . I have lost all my family due to death do not really have been through a very tough few years had to go of sick due to my health and I ended up losing everything ended up in a homeless hostel and numerous things happened to me shall we say I was just a normal working single parent and lost it all 😴

[herbierownay00 in reply to herbierownay00]

Sorry that isn’t really relevant to this site 😞

[Nackapan in reply to herbierownay00]

Try and think the only way is up now. Ic toh dong think monthly Injections ard enough write down all the symptoms and gi back tk go and ask for a trial of more frequent injections to see if it helps any of the symptoms.

Have you got PA?

Tey and stag positive snc fight your corner.

Things can change.

[Ryaan in reply to Nackapan]

Nackapan, I also get confused with the spelling in your messages.

Is it the auto correct on your device.

Edit: Sorry, I just seen you’ve already answered that.

[Nackapan in reply to Ryaan]

The autocorrect also doesn't help. I'm also in the semi dark with the light on the phone dimmed with the anti blue filter. I'm sure most can be deciphered. New phone so will try and turn autocorrect off. Anyway I do mh best.

[Nackapan in reply to Nackapan]

My best 😂

[Ryaan in reply to Nackapan]

Do you have light sensitivity due to B12.

[Nackapan in reply to Ryaan]

Oh yes

[Nackapan in reply to Ryaan]

And noise sensitivity and ....

[Ryaan in reply to Nackapan]

I had both light and noise sensitivity.....more than 3 years on of 1 injection of Hydroxo every 2 weeks it’s gone, I’m left with tinnitus which usually gets worse before my next injection is due.

I’ve always taken daily Folic Acid due to B12 injections so it’s either the B12 or Folic acid or both in combo which got rid of light and noise sensitivity.

Now my 3 kids don’t like bright light and noise.

Hope all your symptoms improve with time.

👍

[Nackapan in reply to Ryaan]

Thank you. Gives me some hope.

I'm on 2 weekly injections of hydroxocobalamin.

The noise sensitivity was alot better but has returned . Noisy paper ar christmas !! Have changed all the lights in the house to halogen or old fashioned ones . Very low wattage in the corners of rooms. Sometimes cant even tolerate those.

Headaches have in the main replaced some sort of migraine they could lat for days

Natural light I'm okay with.

Do get alot of head/scalp pain and sizzling in head when using my eyes. Tinnitus must be getting a bot better as I sometimes realise its quiet

Landline a no jo as sets it off as well as headaches.

Am 14 months in. Did try 3 weekly injections but got ill so back to 2 weekly. I'm not well on thise but eas on weekly for months with no gain.

Vitamins ate important. I alternate with a basic multivitamin from Boots or Tesci or similar. Gentle Solgar iron I tolerate and spa tone. I raised my ferritin levels and am far less shaky and weak. I take ferrous fumerate every other day at present .(never needed an iron supplement before even with pregnancies) so not absorbing that either. The other ones are Lamberts as the multivitamin has a higher b12 dose(I hope I absorb some of it ) I have to watch folate as when I took the recommended 400mcg it went above the normal range very quickly. Obviously something I can absorb from food and tablets. Gp says doest matter If high I also raised vit d . I'm convinced that helped the headaches(rarely suffered before) Was alai told ibuprofen can make tinnitus worse or even caused it as well as impeding iron as can give tiny bleeds. Very difficult when had to use painkillers and still do for head pain but no where near as many now. Vitamin d . I take 25ug as a maintenance dose from H and B. I toon vitamin k recommended on here to take with it . For some reason I got all shaky and hot and felt awful. Might have been a coincidence but put me off that.

Omega 3 i take on days i have less in my diet . Not keen on fatty fish. Do eat walnuts though.i also take vitamin c. I do alternate. I personally do think you need a different mix at different ages. I also think it's important with the timing. Ie vitamin d with a meal or fatty food. Iron with vit c. I found if I drank too much tea I wasn't absorbing g iron. Took me months to raise levels. Si take it away from caffeine and drink more water.

Never taken si many as eat a really good diet. Little did I know it wasn't being absorbed!! and stress 'eats b12 .

Long way to go yet . Am shocked at how long it is taking. I'm not a tenth of 'my normal' functioning g self yet.

Si your 3 children got used to the low lighting ect.

At least you will spot if any of them get low b12. I missed o e of mine . I thought it a problem of vegans and vegetarians and the elderly only. Learnt the hard way. I'm on amossion now ti spread the word.

Take care.

[wedgewood]

You may have Pernicious Anaemia, and need more injections . It’s often difficult to get a diagnosis as the test for P.A. is very unreliable . Self injecting B12 is quite usual by members on this forum , because the medical profession has poor knowledge of PA , and many people need more injections to keep well than they are given by their GPs . I

, for example, need 1 injection every week . . Some people need more often .You cannot overdose on B12 , so no worries on that score. If you feel you would like to try self injecting , just tell us and you will be given all the information. You find out how often you need to inject by having enough to keep symptoms at bay ..if you have been under treated you may have some symptoms that are irreversible . It is not expensive to self-inject . If bought in bulk( 100 of everything) ,an injection need cost no more than £1.20 Best wishes .

[herbierownay00 in reply to wedgewood]

I have been through many different regimes of injections I have had PA for 17 years now diagnosed to late already have nerve damage but have other health issues as well

[jarlethblue]

please don't give up.....it took a long time to get this ill and it can take a long time to get on the road to recovery. It took me a year of injecting twice a day to get back to my new normal. I will never have the energy I had before but i am back working 3 days a week and can partake in family life which I couldn't before. And you can feel worse before you feel better when the B12 starts being replenished. please stick with it. My husband was recently critically ill in hospital, where he spent 40 nights, and I coped which was noting short of a mirace. big warm healing hugs. x. J

[waveylines]

I have an underactive thyroid as well. And the B12 is very important for uptake and conversion of the thyroid hormones. So it is relevant. I agree its hard having more than one condition to try and work out what is what. I find changing one thing at a time is the only way to do this. Post your thyroid results on thyroid uk on healthunlock. Commonly people are underprescribed thyroid treatment as doctors often go by the TSH which they think so long as its in range you are well treated.....completey wrong of them!

I do feel for you hierbeirownynay as you have been through such a lot. Please dont give up and fight back. You deserve better! I appreciate you have tried but there are some really clever knowledgable people on here who can really help you to unpick your health problems and find ways forward. Keep posting....... Big hugs xx

[HelloSun]

It wouldnt hurt to get tested for celiacs disease. I went for years and years without the “normal” symptoms, then, bam! outta the blue- celiacs.

[Sleepybunny]

Hi,

I'm sorry to read that you are feeling so fed up.

Do you mind me asking what country you are in?

Patterns of treatment for b12 deficiency vary from country to country even the type of b12 used can vary. UK tends to use hydroxycobalamin and I think US tends to use cyanocobalamin.

If you have PA or suspect you have PA you could join PAS (Pernicious Anaemia Society).

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS office may be closed for part of holiday period but you should be able to leave a message on answerphone.

PAS support groups in UK

pernicious-anaemia-society....

Other B12 websites

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

There is Facebook group for people with b12 deficiency listed in this next link

b12deficiency.info/very-use...

Samaritans provide a listening service.

samaritans.org/

I am not medically trained.