Constant thoughts about death after diagnosis or starting treatment?

I'm not even sure it this belongs here but I have to say I've NEVER been so down in my life thinking about dying almost constantly. This all started once I got diagnosed with this a couple months ago... just looking for some support. I highly doubt b12 shots can be causing depression. I think it started when the dr told me what was wrong and I first thought "well what's the point in eating healthy if I dont have enough stomach acid to break it down and get what I need" then there's "why am I eating healthy/ trying to get back into shape if I'm going to die anyway."

I've honestly, seriously never thought this way in my life. Sure weeks where I've been depressed as all hell not even eating because a boyfriend dumped me or my pets/family members died. But this is really hard. I get so sad. It's awful. And terrified of the thought of dying. Even typing this I'm crying. I had a pretty good day today but this evening it snuck up on me.

Anyone have this awful issue after getting diagnosed or anything? Any advice/ suggestions would be great.

48 Replies

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  • I can empathise with you, it has been a huge shock to the system for me too. Then to find i was coeliac on top and having to eat what i would consider not as healthily as i had been, has been a personal trial. The bread can be yuk, and i used to quite like cereal, not the ones i have to have now though, more yuk! The one i have just tried is more like the leftovers on the bottom of a bird cage! I spend twice as long at the supermarkets hunting out products which i can have, and mourning the loss of all the ones i cant.

    I try to take each day as it comes with a what will be, will be mentality. It has its bad days for me too, no doubt all of us at some point wonder what we did to deserve this, but we do just have to wade through the bad thoughts and look for the good(lovely cliche!).

    You have had quite a few unpleasant things happen in a short space of time and it has no doubt piled up inside, do you have any distraction techniques? Hobbies etc, mines gardening, poor plants get pruned within an inch of their lives sometimes. I have a good friend as a sounding/ moan board who knows me well enough to accept when i am at times, quite vitriolic towards him and the rest of the world.

    When i felt anxious and depressed on diagnosis i went to the forums for them but it just made me more angry, with them more than myself, so i came out of them. I now try to accept who i am with conditions which to some degree i can control and just take the good and bad as part of life.

    We are always here for each other wether that be to moan, commiserate or congratulate and i think that is nice because it means none of us is isolated with any of this if we dont want to be.

  • I have everything I could need. A great paying job which next month actually, I get a 6 dollar an hr raise. I can get time off whenever I want. Only work 3 to 4 days a week (health reasons) a perfect long term boyfriend and our house we live in, my mom and aunt who are my best friends, a few close friends. But I just think about dying now. It really sucks. I am going to go back to the gym though. Maybe the constant shots just keep reminding me without them I'd slowly get closer to my body shutting down and dying. Also makes me worry what if something happens and we don't have medical supplies anymore and I can't get b12 and iron and all my stuff keeping me functioning. It's kind of like anything I do is worthless.

    But there's also the normal me and happy me saying "no one deserves to suffer, every life is precious whether it's a shot or long life everything deserves to be happy" which is why I'm vegan and blah blah lol maybe if I got a puppy like I've been wanting for years it would help me get through this and distract me haha!

    I've just found treatment whether it's a massage, physical therapy, doctor visits just constantly remind me. So I avoided them for a few years and finally got so sick I felt like and looked like I was about to keel over. And then my wonderful new naturopath diagnosed me and started treatment right then. I see him twice a month for IV treatments.

    I've kind of always had a miserable painful life since I was about 14 everything went down hill health wise and it's all I know now at 23 feeling like I'm 80 years old. Always grumpy and in pain and exhausted.

    Thank you for your kind words.

  • Maybe you need to just accept this is how its got to be, the same way a type one diabetic has to. The world is full of people who take drugs daily to keep them going, which is why we are all living longer and with a (for the most part) better quality of life.

  • That's true. Thank you.

  • Lisahelen, I have solved the disgusting cereal question with an equal mix of LSA, Chia seed and psyllium husks. Mix 1 tablespoon of this mix with 1 tablespoon of mixed nuts and seeds (safflower, brazil, almond, sesame etc). Serve with fresh berries or seasonal fruit. You can use almond or soy milk or just use water if you prefer. I keep ready made containers in the fridge which makes breakfast a breeze.

    I just thought you might find this idea handy. I was desperate after giving up oats.

  • I'm mainly writing this so that clivealive can respond. He's had PA for about twice as long as you've been alive.

    I was horribly down when I first got diagnosed. Little did I know that it was the start of a series of problems that were all going to crop up in the following 12 months (Neuroendocrine Tumours, Diabetes, Raynaud's, idiopathic neuropathy). But I determined a working regimen for my B12 supplements, read a lot about NETs and found I was less likely to die than people without NETs (they're pretty innocuous and the extra medical checks catch other things), I started drinking lime juice with meals to aid digestion, I changed my diet, I cut down on alcohol and, once my energy levels returned sufficiently, I started exercise (swimming).

    Slowly I feel that my old body and brain are returning.

    I'm 60 next year and had spent quite some time thinking "I doubt I'll even get that far". Now I'm contemplating reviving my plans to pop over to the USA and visit Yellowstone park for the August eclipse. Although that may be a bit too much too soon.

    B12 deficiency can play havoc with your emotions. It may take time, but now you've started a sensible course of treatment, you should start seeing fewer of the black days.

  • Yellowstone is fabulous, we had snow in July there, and Steamboat Geyser went off for the first time in 100 years. (and you would get an eclipse) Hope you make it.

  • TBH it's looking less and less likely. My two pals that I would be travelling with are going to be terribly busy next year trying to sell their business. And one of them is looking at the possibility of needing a pacemaker.

    Maybe the following year. There won't be an eclipse, but I've already seen a total solar eclipse - one of the magic moments in my life.

  • How about a separate post about your solar eclipse, where etc. I know it is off topic but interesting.

  • A bit too off-topic I think. Plenty of info here - greatamericaneclipse.com/wy...

    Some pics from the 2006 eclipse here - imageevent.com/frankhollis/...

  • Yes off top topic but good to see something other than B12. Great photos thanks.

  • Thanks for your inspiring story, fbirder.

    I do hope you get to Yellowstone one of these years! :-)

  • You can find out how to look after your tummy and as long as you get enough B12 you will live to a great age ! HONESTLY ! There is no need to be depressed about it . That's easy to say I know . I have been depressed about it too but that was mainly because of the medical profession's attitude to

    PA -You have huge support here and it was right for you to tell us about your depression . Having PA makes us think more about our diet which is a good thing . Do keep in touch .You have many sympathetic ears here . You have my very very best wishes .

    .

  • Thank you so much. I used to live stream video games and I have met dozens of new fans/friends I talk to quite often on social media. I think I've gotten more depressed not streaming. My growing little community makes me happy and I can make them happy being the goofy person I am having fun playing video games and talking to my audience. I should start that again even once a week minumum.

  • Now, Ladycool (no you can't call yourself Lady awkward, it will never do!!) I think you could do with a good dose of a Vitamin B Complex.

    I self inject and take quite a few Functional GP prescribed supplements. You'd think that all would be well but recently I hit a really flat spot and my dear husband actually got up and handed me 2 Mega B Complex capsules as well as a glass of water.

    I think until you get the balance right you will still be having unexpected symptoms. I feel you might be suffering one such spot so can you check on here for all the supplements you need? Try to up your other B's immediately (B6 continues to help me ) and make sure you do eat a banana a day for potassium.

    Chin up - this will take a bit of time to fix - just like you took some time to become so sick, so too, you will take some time to recover. But when you do, look out world!!

    Soon, you will be unrecognisable from your old self. My friends can't believe the difference B12 has made to me and you, too, will wow yours.

    Hang in there and please get some extra vitamins into your system.

    Good luck!

  • I have super b complex by Rainbow Light but I was scared it's too much b6 or something. I take prenatals every day, my naturopath said it's great I'm taking them because of the extra iron, folate and other stuff we need as non healthy people and NO I'm not pregnant and dont want to be haha. Maybe I should take the super b on top of the prenatal? Just scared I'll get a vitamin toxicity. I take 5mg folic acid a day too and for years added glucosamine and MSM, vitamin D which I haven't taken in a few days actually and that could be causing me to be sad, I ordered one with 5000 mg in it. And taking a big iron pill full of good stuff like prune extract and vit c. Maybe I do just need a balance. And maybe the super b won't be dangerous since there's so much in there and my stomach doesn't absorb much of anything that some of the Bs will get through to my system and not all 3000 percent of them

  • Hi again, Ladycool. I am not a medically trained person but I think you could consider a B Complex of some sort. Most of us do. When first seeing the Functional GP (blend of GP and Naturopath) I sheepishly admitted to taking 400 mg of B6 (to stay sane!!) well before any sort of diagnosis. And I took this level for over 10 years. The FGP said he was not bothered by that level and had used high doses of B6 effectively. I don't suggest you go overboard but I do think your symptoms sound like B deficiency. Maybe you could ask your naturopath? Also, Gambit has some ideas to follow up, too.

    Take care.

  • Okay. The super b has only 75mg b6. And 5mg of b1, b2 and niacin. 100mg b5. Spirulina. Choline. Biotin. Inositol. Etc.

  • Yes depression is caused by B12 deficiency. I found it was the worst, nastiest of my symptoms worse than loss of balance etc.. It disappeared when I had 7 or 8 injections, one of the first symptoms to go.

  • I've had about 12. Twice a week so far. Maybe I need more of other vitamins like Beth said

  • People respond differently and take longer for some symptoms to improve depends where the B12 decides to go. Then one day - hey I haven't cried for the last 3 days. It will come - keep coming back here for comfort and advice.

  • Yeah just my problem is I've gotten this way right after diagnosis and starting treatment. I only think about dying and get all panicked and terrified. I'm not moping around being sad for no reason and stuff. I've lost interest in a lot of things too.

    I've always struggled with depression. Having a bad day here and there especially around my period which should start in a few days.. but never as often as the last couple months.

    Thanks for listening ❤

  • a) you may find this post useful

    healthunlocked.com/couchtob...

    b) are you being given just methyl cobalamin? people respond differently to different cobalamins - whilst methyl is often pushed because it is closer to one of the two forms used at the cell level it doesn't work well for everyone - it does nothing at all for my neuropsychiatric symptoms. You may want to try either moving to one of the unmethylated forms or try using some adenosylcobalamin (generally that is going to mean sublinguals) as well as the methyl.

    There have been a number of other posts over the past year or so from people who found that they developed depression whilst they were being treated with methylcobalamin.

  • Thank you. I inject cyano.

  • may be worth looking at other forms of B12

    do you know what your folate levels were like?

  • I might look into it. They were right in the middle and I'm taking a 5mg supplement of them several times a week.

  • if you are taking that amount of B9 supplement the levels shouldn't be a problem.

    Are you using a methylated folate? some people have reported that causing them problems.

  • amazon.com/gp/aw/d/B00CC4CZ...

    I'm taking this. They didn't label gelatin on the site and ingredients and mine has it in there. Made me mad

  • folic acid so not methylated.

  • Okay so that's good then right

  • Wow Ladyawkward I can so empathise with you but if you want to bore yourself to sleep (I nearly said death - Ooops sorry! :D ) click on my name above and read "My P.A. Story" in my profile.

    The bottom line is there is life after P.A. and I'm still "clivealive" at 75

    I and all on here wish you well for the future.

  • Thank you. I know I will survive but I'm just terrified of dying. I never have been until I got diagnosed

  • Wow. I read all of it. That's interesting about the bronchitis. I got pneumonia when I was a couple weeks old and several more times before I was 2 and every year after until around 13 I had bronchitis and if untreated (my mother never let it happen as she knew exactly when I had bronchitis because she was an expert at it with me over the years) it would turn to pneumonia. I stopped getting it until 2 years ago I got bronchitis again. Haven't had it this year. I grew up wth migraines too. Sensitivity to taste (I could never take medicine or eat food I didn't like) and sensitivity to sound and light. Still to this day have it. It's probably all connected. Got diagnosed with chronic migraines this year and positive antiparietal antibody which is why I made it to this site

  • I'm not a medical expert but it sounds as if you always needed extra B12 from your symptoms and sensitivities. I bet if you keep on with the injections, you'll start to feel better and better! Best Wishes and of course, you'll keep us posted?

  • Yes I will and thank you :) my b12 has always been in the 1000s when checked. But that was from supplements. Turns out I wasted my time and money on them since I didn't absorb really any of it

  • I'm glad you are getting injections now! Hope you feel better very soon.

  • We can always depend on you for comic relief, clivealive!

    BTW, how are you feeling with the extra injections? Much better, I hope!

    Sorry ladyawkward, if I hijacked your post a little! :-)

  • I have my last, final and ultimate four weekly injection after 44 years on Monday morning at 10.10am

    It's every three weeks after that and I'm already "feeling better" at just the very thought of it. Time will tell....

    Thanks ndodge

  • How wonderful for you, Clive! Just three more weeks.... :-)

  • Hi Ladyawkward

    I have had B12d for a year (severe neurological symptoms, very frightening) now mostly under control. Oct last year seriously ill, almost died. I also have Addison's disease (a life threatening illness) and have had them most horrible time, after ten months I am finally getting back to normal, however have chronic fatigue still. I don't have stomach issues, but have recently changed to an almost fully organic diet, juicing and making smoothies and lists of fruit and veg. I feel SO much better. Also cut out gluten. Going for as much raw as possible. Learning lots of new recipes!

    I have had appalling treatment from the health service here (in Scotland, plus I am a nurse). I have been severely depressed at times and have lost my job due to health issues. I have been in a very dark place on several occasions and, if it wasn't for my kids, I reckon I wouldn't be here. I even made plans on how to do it.

    I would say I am only coming out of it now and can see a future. I have just turned 50 and didn't think I would see my birthday. You will get there, remember, we are all here for you. Good luck x

  • I'm so glad you're better. I'm almost all gluten free aside for some junk food treats and special occasions I'll eat a vegan burger:) I'm vegan and eat almost all organic and gmo free. Mostly produce and make home made stuff now :) helps a ton but still have stomach issues. I don't make enough hydrocloric acid and can't digest my food well and of course, absorb b12. So the acid thing needs to be figured out but my stomach is so damn sensitive :( seeing a gastroenterologist soon

  • Hi Ladyawkward

    Hope your feeling better soon, take care

  • Hello!

    How are you?

    I haven't had a chance to reply sooner and now don't have time to read all the replies you received so forgive me repeating things that may have been said....

    Well done for recognising that your body isn't working properly and for doing something about it! Don't worry: get the right treatment and you will be OK again - focus on getting yourself well. It's positive that you can see it and want to!

    I know exactly what you mean and have had the same problems. I've been self injecting every day for a year now and feel much better.

    I have also found that low folate makes you feel grim, as does low potassium.

    I seem to need ridiculous amounts of B12 and supporting cofactors to be well and if I start to feel to emotional or black then it's a sign I need more potassium, which I get from my diet and from adding in LoSalt, available from some independent stores.

    Different people need different things so it's a case of trial and error. You can get extra folate as folic acid, methylfolate or folinic acid tablets.

    I know it's horrid/hideous but don't worry: you WILL improve! :-) x

  • Thank you so much. I'm doing every other/2 days I think taking the super b complex is helping and I just got my 5000vit d in the mail today. I feel physically awful but the thoughts are less maybe it's the b complex

  • Thank you for your reply. The B vitamins could well be helping. I take a broad spectrum multivitamin and mineral supplement because I seem to need the extra minerals too. Without lots of everything I don't metabolise the B12 and so don't get any benefits from it.

    The guys on the Facebook PA/B12 deficiency support group suggest taking 5 mg of folate per day for very frequent injections and I take 6 x 800 mcg methylfolate tablets and the rest is from my multivitamin and mineral supplement.

    Are you in the USA? If so you can get NoSalt instead of LoSalt which is possibly better if you get enough sodium from other sources. Be careful with potassium - just try a little extra and see how you go - as it is possible to have too much but it is worth trying as not enough is just as bad and can make you feel terrible!

    Good luck! x

  • Please look into having hair mineral analysis testing to rule out other deficiencies. Magnesium can cause what you are experiencing. Depressed and suicidal my whole life and now not. blood tests don't show up long term deficiency, just research hair testing labs well there are some shockers out there. I used luceblaboratories.com the tests were clear and came with recommendations on how to resolve issues. Try doing some magnesium salt foot soaks or soak in a bath of epsom salts for a few weeks and see if you feel any better.

  • I don't think I'm deficient. I get 2 grams pumped into my veins a month of magnesium!

  • It is worth checking. I have Myers cocktails twice a week which have magnesium in the IV and I take 200mg 4 times a day orally, if I am off it for even a few days symptoms come back. Magnesium is very underrated.

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