Still feeling shattered

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Having recently been diagnosed with PA, I have had my first 6boosters recently and need to have a jab monthly. What concerns me most is that I still feel totally fatigued. Is this normal? It's almost a month now since my 6 boosters and can't wait to get my monthly 'fix' next week as I feel like I have done an royal marine assault course. 

Whilst the medical world had played this condition down as being very common, I was not prepared just what a dramatic effect this ailment would cause as I am now deeply concerned for my job because of the symptoms.

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  • Posted

    Hi Ian  p/a is a condition where the body does not have the ability to make enough normal red blood cell caused by the deficiency of b12 normal red blood cells produce the oxygen that the body needs to function hence the fatigue .. it took me three years suffering from i was diagnosed with C.O.P.D because of my shortness of breath .. i went to Greece to visit a friend and collapsed and rushed to hospital to have 5 units of blood and intrinsic factor and cobalamin .. before halejuha i was told i had very serious p/a .. on coming home i changed medical practice .. but as you say the medical world dont seem interested as i was told in Greece the british dont have the knowledge ... in Greece  you can get a b12 injection when you want  or else 2mls every six weeks in uk the normal is 1  injections of iml  every three months .. if you are getting a jab once a month then you are one of the lucky ones .. i get i jab every 8 weeks .. i get a supply of cobalamin from Greece  and inject myself .. i am 70yrs old and since i started managing myself then i  feel a lot better but also have bad days   too much b12 cant harm you .. i know a lot of people who are b12 deficient and not one of their management plans are consistent .. i am going to retire to Greece this year where there management of b12 deficiency and p/a are second to none ..so i wish you luck my friend and hopefully you can recover enough that it doesnt affect your work   ... take care chris
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    • Posted

      Thanks for your reply Chris. Firstly, what on earth is COPD? I am new to all this so please forgive my ignorance! 

      From the limited literature I have read on this subject it certainly seems that people struggle battling with their GPs re dosage. I have been pleasantly surprised how robust my GP has been to get me sorted. I was also surprised that he has placed me on monthly injections. Trouble is, I am only 3 weeks since my boosters and already feel the original symptoms are beginning to return (fatigue, breathlessness, strange metallic taste, stomach pains) so it seems I really do need my monthly shot early! This bloody disease has knocked me for 6! I am a fit 52 year old and up until a couple of months ago, I still played rugby.... It seems I will now have to hang up my boots as I can barely walk 400 metres without breaking into a sweat and panting like I've just run a marathon! It seems my whole lifestyle is looking set to dramatically change and more worryingly, my job prospects to.... Very worrying times! 

      Looks like I may follow you out to Greece Chris!!

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    • Posted

      Hi I am like you and am desperate to have more b12 I have 3 monthly injections but it is a nightmare if feel so tired that the only way I can explain it is that my life batteries are running out ,I too fear for my job and feel this half life is not worth living at times can you tell me where I can get it in Greece I am prepared to visit I order to set up a regular supply thanks that how desperate I am 

       

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    • Posted

      Blimey June, your expression "life batteries running out"... Thats it!!! You've hit the nail right on the head June!! That's exactly how I feel particularly the last few days. 

      I am already on maximum dosage so I doubt I will get any more B12!

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    • Posted

      Hi Ian   firstly c.o.p.d is Conic Obstructive  Pulminary Order unable to breath ordinary.  usually down to smoking  or other lifestyle . which because i couldnt breath properly  when i went for my b12 injection  .. some clever spark got  me to blow in a tube and told me i had this condition c.o.p d and was treated for that for roughly three years , i went through three years of hell from someone who had good health all my life to this ... my breathing got worse and worse i had terrible fatigue dizzy turns and blackout , dry , burning tongue , tinnitis  sore joints  , severe pins and needles  and lost my libido  plus severe reflux ,, everthing was put down to c.o.p.d  ....my wife had c.o.p.d  which developed into emphyzema then lung cancer and death  in her illness all she had was terrible breathing  i knew she never got the things i had wrong with me as i was her carer 24/7 for 6 yrs ...that was seven years ago .. i have a new friend now who by chance has b12 deficiency and p/a and lives in Greece ... she told me the first time we met i didnt have c.o.p.d  i had what she had p/a .. i was pretty ill last year and decided a spell in greece would be good for me .i was there roughly a week and collapsed as i could hardly breath and rushed to hospital i was in a induced  comma for two days  .. my haemoglobin level s were at 4.7 usually fatal to a feeble person  i was given 5 pints of blood and intrinsic and cobalamin {b12} my friend was told i was lucky to be alive .. on my swift recovery i was told i did not have c.o.pd but p/a and had been diagnosed wrongly for three years ..it was fully explained to me fully in greece  what lay ahead ... because of the drugs i had been given for c.o.pd for so long  they had taken there toll .. since coming back from Greece i changed my practice  for obvious reasons  and my new practice tell me now some of my files are missing as i have taken a claim out against old practice ..so Ian my friend and i have read up a helluva lot of stuff on p/a   a lot of people talk about this buzz they get with there injections it doesnt happen that way only people with normal b12 would feel a buzz as they dont need it  .. cobalamin defficiency  stops the red blood cells from making enough oxygen  for the bodys need  hence all the  problems you have ... cobalamin can only be absorbed  directly into the stomache  ..a lot of doctors in this country just shrug p/a off as they dont understand it , the doctor i am attending has not got a clue i have to fill him in ..in Greece they dont have our perscription system  you can go into pharmacy and order any drug over the counter and the drugs are cheap .. then go to a clinic and get nurse to give you injection usually about 6 euro,s  you cant overdose on cobalamin ,, but if you dont have good doctor you can slip down to the danger zone as i did .. i am dong not too bad now for a man of seventy .. ive two yorkies who get me out the house  all day and my breathing is ok ..so i think the better the doctor you have then the better your condition will be managed .. if your doctor is not taking at least one blood sample a month then change him/her  as its crucial they keep an eye on blood levels   hope this explains a bit to you   take care chris          ps   the best site i found for information on p/a was the N.H.S and just keep following the links or the Mayo Clinic
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    • Posted

      Hi Ian, It sounds like you may not be very good at metabolizing the cyanocobalamin in the B12 shots, so you are not getting maximum benefit. 30% of individuals can't convert CN-Cbl to the active forms of B12, adenosyl and methylcoblamin. This is due to a genetic mutation that they have. The second problem that you have is due to the way the B12 is injected. You flood the body with high dose B12, which is way too high for the body to take up all at once and so basiclaly you urinate 90% out the first day, and so you rapidly drop off your levels. It is like an old battery. You can get a bit of charge in it, but it quickly runs out and you are flat again. i used to have this problem too. Could run around madly just after the injection, but quickly the energy seems to run out and then you are like a car on one cylinder. That was before I found these b12oils. They are magic!!. They have a prep with both active forms of B12 in them, adenosyl and methyl, so you don't have to worry about your genetics. The next thing is that you rub a bit on your skin every day, and so keep your battery fully charged. Finally, because the B12 is around all the time, you can gradually replace your stocks in the liver and most importantly in the brain. It has changed my life forever. No more ups and downs and I feel fully charged and actually doing better than most people my age. What a buzz!!
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    • Posted

      Well done Madge C  for such a load of big fancy words .. you seem to have cured all  p/a sufferers  just like that with this so called oil ..lets just call b12 cobalamin  without the fancy names  for the moment  ... this fancy oil how does it reach the stomach where it has to mix with intrinsic factor  to make proper red blood cells .. maybe this oil is called heiniken  it reaches the parts other lagers dont ... dont you think the medical profession would  perscribe this wonder drug instead of us queuing up for injections ... loved the urinating bit and the buzz  factor ... dont raise peoples hope  Madge   if you are floating around having these buzzes then you certainly dont have pernicous  anemia
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    • Posted

      Hi Chris, you sound very skeptical, which is fine. A couple of less fancy things that you might be interested in. If you have PA, you have it for the rest of your life, so it is worthwhile trying to understand a little bit more about vitamin B12 and how it is processed within the cell and what it is used for. First, whilst B12 (of whatever type) is normally taken up from the intestine after it is bound to IF (as you rightly point out), it is then bound to a receptor on the gut wall. It then is processed within the cell, removed from IF and is bound to TCII. The TCII is produced in the gut epithelial cells and in other parts of the body. What you need to realize is that it is only when B12 (of whatever type) is bound to TCII that it is taken up by any or all of the cells in the body. Thus, technically you don't need to have it bound to IF, but to TCII. If you put the B12 into the oils and rub them onto the skin the B12 can bind to any TCII that does not have B12 on it. Now this TCII (free) is called apotranscobalamin, when B12 is bound to it is called holotranscobalamin. If you are not getting B12 from the intestine because you have PA, then there is a lot of free (apotranscobalamin) transcobalamin circulating and is available for binding to B12. This is why injected forms of B12 work, thus injected B12 does not bind to IF either. So if you can get your B12 onto the free B12 binding protein (apotranscobalamin) and make holotranscobalamin and make sure that there is always B12 bound to transcobalamin it will in fact stop you having the symptoms of B12 deficiency associated with PA, and then indeed you will be able to have a normal energetic life. Entirely your choice however. You can find out more about holotranscobalamin on PubMed. Last time I looked there were about 150 references, but that was about a year ago, so I am sure that there are more now. Cheers.
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    • Posted

      Thanks very much for your response Madge...Sounds interesting but I must confess, I did struggle to get my head around your email... I would give anything a go if there was a chance of restoring my health to my pre-diagnosis days - don't knock it till you try it as they sometimes say! 
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    • Posted

      Hi Madge of course i am sceptical .. why dont you say things in laymans terms instead of confusing people with words they dont understand  a lot of the people on this forum are young and confused ..you seem to have found a magic oil , rub it in.. and hey bingo we are all having a buzz .... before the dicovery of cobalamin  p/a was a fatal ailment thats what pernicious means .. you say b12 is associated with p/a .. i am sorry to tell you b12 deficiency IS Pernicious anemia .. simply you are unable to absorb b12 into your stomach .thus you dont make proper red blood cells which make haemoglobin which carry oxygen to the lungs.. if your doctor does not manage you properly then the haemoglobin levels will fall till you are seriously ill ..there are not two people on this forum   with same dosage of b12 injections .. does that not tell you something  .. like a lot of uk doctors havent a clue  i am afraid my friend if i had not gone to Greece then i would have died   and also most of the words you use are greek words why ... because Greeks had the answer to haemotology  centuries ago ..so please dont tell these young people a little rub of your magic oil will cure them .. p/a is a serious illness and if not looked after can lead to problems with the gastric system and other serious issues  so maybe i am sceptical ... the buzz you talk about  doesnt happen to deficiency sufferers  it helps them bring haemoglobin levels up .. the buzz you talk about happens to normal people because it gives them extra b12 in there system ,, that is why it is a banned substance in sport ,,,.. if this oil was the miracle you about  why are the rest of us not recieving it ?????
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    • Posted

      Hi Chis, you sound very frustated with it all. So was i when i started, I had so much to learn and as you say so much sounded like jargon and was hard to deal with. Let me just say, my grandmother died of PA. She was 65 when first diagnosed and she died at 70. This was before anyone knew about what caused it and how to treat it. In those days you had to have a transfusion of blood. This was just before AIDS was prevalent in blood, so she was lucky she didn't get it. Before she died she went through lots of mental problems. We thought it was the drugs, but she wasn't on any, it was the PA. So it was very serious. Whilst you may think that B12 deficiency and PA are the same thing, they are not. There are many people who are deficient in B12 who don't have PA. If you have inflammatory bowel disease (IBD) with conditions such as Crohn disease, you also become B12 deficient. if you take anti-acids or you are on gastric reflux medications you also become B12 deficient. This is not to mention all the people who are vegans or vegetarians or who have genetic mutations in methylation enzymes. Actually B12 deficiency due to PA is the least common form of B12 deficiency. FYI, you don't absorb B12 in your stomach, you absorb it via IF in the small intestine. Please, for your own health's sake find out more about the truth of your condition. You can be skeptical if you want, your decision, but I can tell you that the oils work. I can also tell you that if you keep taking the shots you will end up like my mum, in the nut house. Entirely your choice. I have made mine. Let's see how we go. Good luck. Oh and by the way, there are over 200 people who are using the oils. Many of whom had PA, or autism spectrum disorder or chronic fatigue syndrome. These people were not being fixed by standard B12 shots or tablets, but they have done very well on the oils. 
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    • Posted

      Hi Chris. I'm sorry you've had such a bad experience. Technically speaking, B12 deficiency and PA are different conditions.

      I'm B12 deficient, but I don't have PA. The cause of mine might be age-related or genetic, as there is no other immediate explanation. My specialist says some folk just ARE deficient - "it don't mean a thing". But you still feel rotten!

      My partner is B12 deficient too, but he doesn't have PA either. His is a side-effect of taking Metformin for other problems, and was only discovered because I read about Metformin on this site while researching for myself.

      I guess the oils work the way hormone and nicotine patches do - leaching a tiny dose in through the skin all the time. They are not currently available on the NHS probably because they are new, maybe not been through the red tape of UK testing yet, or cost too much. This is true of many, many treatments and drugs - it doesn't mean they won't help.

      Excess B12 can't do you much harm but, over time, too little definitely will. Smoothing out the dips - perhaps with oils or lots of small jabs - makes sense.

      Best of luck with your treatment and case.

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    • Posted

      Hi Chris can you tell me which part of Greece  I could get the b12 , I am thinking of having a

      holidau purely to get some ,do u think the chemist would send a regular order over , I have a nurse friend who would inject me and teach me how to do this 

      thanks for this life line 

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    • Posted

      Hi Ian it's been awhile I know, since last speaking have had a free and frank discussion with my GP ,fat lot of good it did me ,I am going to see a hemotolgist soon privately ,but even better I went to Spain popped into a chemist and was able to purchase 10 lots of the red stuff and needles for under 10 uros so after I have seen the specialist and had my next GP jab I am getting my nurse friend to top me up at 6 weeks ,more often if I feel I need it ,

      i can't tell u how I felt when I bought it I just burst into tears as now I feel in control and so relived I know where I can get it from !

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    • Posted

      Hi Madge. I've just read your post in the PA summary section. I'd really be interested to know more about the b12 oils - is it effective & where can it be obtained etc. etc. I'm self- treating 'low normal' b12 levels. My HB is low 11 ish , Ferritin is also low, but Doc dismissed it, doesn't think PA is a possibility???.
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    • Posted

      Hi Caitlin, This web-site doesn't allow posting of web-links, probably for security reasons. I'll put the links in your letter box (inmail). The oils have the two active forms of B12 adenosyl and methyl B12. They give a very even form of delivery of B12 without massive ups and downs. The Ado/Me B12 mix means the the oils work in nearly all people, which is not the case for cyano and hydroxycobalamin (which are inactive forms of vitamin B12 that have to be converted to active forms). FYI cyanoB12 has limited utility if you smoke, or have hypothyroidism or are vitamin B2 deficient, which is almost never tested for. Hydroxycobalamin is only marginally better. The oils really do work and I use them every day. I don't get the big ups and downs from injections..I think it is so hard for people to deal with PA and other causes of B12 deficiency, and I am just trying to do my little bit to help, even if it is just one person... 
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    • Posted

      Hi Madge. thank u for info. ur knowledge re b12 is phenomenal. interesting, i have both hypothyroidism & severe Angular Stomatitis (b2 deficiency). taking up to 600 mgs a day of b2 with minimum effect. can u say what the difference might be between taking b12 spray sublingually & the b12 oils. i've been doing the former, but don't feel any better. look forward to getting the b12 info per e-mail.

      thank u, thank u, thank u.

      Caitlin.

      btw, do u know if the b12 oil is available in the UK?

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    • Posted

      Hi Caitlin, my pleasure on the information. Well you are cetainly pushing your luck with both hypothyroidism and Angulat Stomatitis. That will certainly have an effect on your energy levels and also on your B12 levels. My understanding is that you will have to get your T3/T4 levels right to process the B2. Do you know if you are absorbing it (you should see bright yellow urine if you are, particularly with such a high dose). Also are you taking iodine (you probably have checked all of this out). As a rough guess, and from experience I would say that the oils are about 20-50 times better than sub-linguals. I know some people who have used up to 12 doses of sub-linguals (don't ask me how they had the time), and they are doing much better on the oils. On some of the chat sites they are saying that the oils are as good as injection (but then again I never had to inject). As far as I know they ship the oils all over the world, but no they don't have a distributor in the UK (as far as I know).

      You need FAD from B2 to fire up your energy systems (apart from many, many reactions),, so I wish you luck in getting that right.

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    • Posted

      Hi MadgeC, I to am very intersested in the oils and would really appreciate if u could inbox me with details of where i can purchase. 

      I am a desperate mother to a 21 yr old , who has had had no life for the past year and a half. She has been going to GP for approx 3 years complaining of fatigue, lethargy which has got worse over time. Numerous blood results indicated periods of Neutropenia but they said they would just continue to monitor. Approx 6 months ago they finally checked her b12 levels as her world had fallen apart. Constantly crying, headaches, stomach pains, confusion, poor memory, sleeping for up to 48 hours straight. But still feeling tired. Shouting, snapping at people for no reason then break diwn in tears and feeling guilty. The crunch came for me when she stated that she no longer wanted to be alive feeling like this and could not go on. Also Handed her notice in at work out of the blue, fortunately has a sympathetic boss refused to let her go.

      Her b12 levels were 120. The Gp started her on sublingual Cyanocobalamin, 1000mcg every day for a week then 3 times per week. She has been on them for approx 6 months and has seen no real progress and unfortunately they have caused severe acne all over her body face and arms( beautiful clear skin prior) mood, mental clarity has not improved. Therefore been back to See another GP this week who has started her on Hydroxocabalamin injections starting again on loading dose.

      The only tests she has had are GPC antibodies which was negative, therefore they have said NOT PA , just staright forward b12 deficiency and currently waiting for Coeliac test. Not diet related as food chart has been completed. All other blood work with normal limits. We are at the end if our tether, i informed her of these oils last night and she would really  like to try them. Her words, nothing ventured, nothing gained!!!

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    • Posted

      hi MadgeC. thank u once more for that valuable info.. the oils sound just the ticket for effective home treatment of low b12. i have recently started the injections from my Environmental Medical Practitioner, 0.5 mls alt. days subcut. so we'll see how that goes. re T3/4 Doc refuses to do them as my TSH is within the normal range with 100 micros of Thyroxine ???? yes, i seem to be absorbing the B2 but effects seem to last just about 4-6 hrs before the AS symptoms reappear. although my Doc is about my age, her knowledge seems minimal & from the dark ages. sadly her attitude is likewise. ......que sera sera??? thank u again for valuable info. /response. much appreciated. Caitlin
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    • Posted

      hi Lettie. i'm so sorry to hear what u & ur daughter have been experiencing. my sympathies are with u both. in case MadgeC does not get back to u soon, the following is the address info she passed onto me. unfortunately, the system won't allow the full 'cut & paste' address to be forwarded on here so i'll put it in words to u. it's the usual 3 w's followed by B12oils dot com. hope it allows this through. i do hope ur daughter gets some help soon. i'd suggest she/u insist that she gets referred on to a hospital specialist as the neutropenia should be properly investigated. best wishes. Caitlin.
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    • Posted

      Caitlin39841, thankyou so much for the info. I am going to order some , we feel we have nothing to lose in the long run. Regarding her Neutropenia the GP dose not appear to bothered as it is not consistently low. But during my research it does appears connected with b12 deficiency. I will be requesting further tests when we go back in two weeks. Think a little rant to GP is on the cards. Im just finding this all a little overwhelming and confusing. But we will get to the bottom of all this eventually. I may be overplaying things but i feel there is definately something else going on but not getting the right tests/ answers. Maybe over sensitive as husband has Non Hogkins lymphoma too , so maybe i am being over sensitive to to it all. Once again many thanks, appreciate it. 

      Kind regards Lettie 

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    • Posted

      hi Lettie. hope the olis do the trick as quickly & as effectively as possible. do let us know how it goes if u get a free mo. take good care

      Caitlin.

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    • Posted

      Hello MadgeC,

      Thanks for knowledgeable insight on B12 deficiency and its treatment using oils. I googled B12 oil but no luck. Can I get some key words to use in my search or can you share the oil info through some other way? I will really appreciate it.

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    • Posted

      hi nawaid38998.

      the moderator doesn't allow commercial web addresses to be passed on here , so this is the website in words : its: b twelve (twelve in figures) dot com - hope that will get u there.

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    • Posted

      Thanks to you and MadgeC, I checked the link and it will be a new experience using b12 oils. I am hypothyroid with IBS issues that caused me b12 deficient. I take Methylcobalamin injection when needed and i think it makes my iron levels go down so a little bit of struggle. I think these oils would be worth a try.

      Now, about the usage, where in the body are more free b12 thirsty cells? and how much can be applied daily? Has anyone checked b12 levels before and after few applications?

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    • Posted

      hi nawaid 38998.

      hope madgeC or the b12 oil ppl will advise u which are the most appropriate oils to use as u have low thyroid levels as well. fraid i can't advise where's best to appy them, but i'm sure there will be instructions with the supply. hope it goes well for u. it would be good to hear how u respond to them.

      best of luck Caitlin

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    • Posted

      Hi Nawaid,

      That is interesting about the methylB12 and it lowering your iron levels. I would assume that you are incorporating the iron into haemoglobin, which would mean that the serum iron would drop. That is a good sign. If you are still having thyroid issues, I would try taking extra riboflavin, vitamin B2. Let us know how you go. Interesting. Seasons greetings to all.

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    • Posted

      Hi Madge

      Very quick note ... could you tell me where I could buy b12 oils please. I am desperate to try something as struggling terribly in between injections and have tried supplements and patches without success .

      Many many thanks

      Jan

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    • Posted

      Hi madge. Have just come across your post. Can you please email the website for the oil?

      Many thanks

      Carolyn

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