Hi, I am a 20 year old female who has recently been diagnosed with pernicious anaemia (around the start of April). I was experiencing extreme tingling in my hands and feet which promoted the doctors to check my B-12 levels.
Since having my initial loading doses, some of my symptoms have improved whilst others have worsened, such as experiencing breathlessness and balance/ dizziness issues. How long has it taken other people to notice (if any) improvements in such symptoms?
I feel rather uneducated about the condition and the GP didn't have much more to tell me other than I will be getting an injection every 3 months for life now. I was wondering if anyone else is on here, similar age to myself as it can feel quite isolating!
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Ellamae2
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Daunting news for someone so young but try not to despair. You gp has acted and your now on treatment which is the good new's.
We are all different when it comes to recovery, many report symptoms being worse before seeing improvement, where as others require more frequent injections. I was prescribed the 3 monthly injections but due to my ongoing symptoms I requested the Dr to prescribe every 2 months.
It's early days in your treatment and the damage has got to repair. Try and eat a healthy nutritious diet.
I hope you feel better soon and do feel free to ask questions as I am sure others will reply and give advice.
depending on how long you were deficient, and thus how much damage happened during that time, there can be a wide variation in how long it takes to see improvements. Unfortunately, the repair of the myelin sheath that protects nerves can bring increased sensation, which sometimes means an increase in painful or uncomfortable sensations as the damage that had already happened is now felt better as nerve function improves.
This period is sometimes called early treatment decline and could take anything from a couple weeks to 6-7 months in the worst cases. Improvements in nutrition and/or supplementation as needed can make a big difference in speed and completeness of healing but nerve repair is very slow no matter what, and some symptoms, if present for a long time, may be stubborn in improving.
It sounds like, although you do report some neuro symptoms ( tingling/ pins and needles), you may have been caught earlier and also have the advantage of youth - usually younger folks, if fairly healthy in other respects, can recover more quickly. You may find you need injections more often than 3 months but I'm sure you will figure out whether thats needed or not given how you respond to the injections.
hi Ella welcome to the PA community. I’m 22 yrs old but my PA was first diagnosed when I was 18 yrs old. When I was first diagnosed I was never given loading doses which made it very difficult to recover out of b12 deficiency and notice improvement of my symptoms which are also neurological and hematological. I only recent had started proper “loading doses” (after evidence of b12 decline on once monthly) and at first I noticed some potential improvement but tbh it’s been about 3 weeks and I don’t feel that much better. I know it is common for symptoms like brain fog, concentration issues and neurological issues to take a little more time to improve. The most important factors to seeing progress in your healing is finding supportive educated doctors who understand PA and will work together with you to make sure you receive good care. Try not to go very long without injections because your levels will drop again. It is important to maintain high levels once you reach them, and ideally reach healthy levels quickly. B12 is so important for good health and optimal functioning. I’d be happy to chat whenever you need, I know it is not easy living with PA as a young person and processing the diagnosis
Thanks for your response (: I started my loading doses 3/4 weeks ago, I’ve seen some improvements but other symptoms have gotten worse currently. Do you ever find it hard explaining to your friends or anyone your symptoms? I find some of my friends don’t really understand all of the symptoms and how it feels
It can be very hard to explain to other's. Nobody seems to understand other than the one's who suffer with it. I found this site helped me because I could talk to others who understood me. If I just wanted to vent off in frustration they understood and didn't judge me. Coming on here has taught me a lot and I have felt as if I am among friends.
This damned illness is hard to explain due to such varied symptoms which change from day to day. 🤗 💐
yeah it’s been hard talking about it with my friends who are all quite healthy and full of energy lol. They were supportive when I first told them about it but I could tell they didn’t completely understand but tbh I’ve found most people don’t fully understand what it is like to have this condition unless they have it themselves. Even my parents and siblings don’t really get it or educate themselves about it other than what I tell them. It’s why I’ve found the pernicious anemia society to be so wonderful because it can feel lonely having PA. I’ve been navigating life with PA for about 4 years but I still have moments where I feel some grief about having to get the shots, or frustrations with my dr or insurance.
I’m not young like you (46) but was diagnosed in November 2022. However, I know how you might be feeling. It was a big shock for me and hard to understand what was happening. I had to do a lot of reading about it too. You will get better with injections and slowly you will also start to accept what you have and manage it. It just takes time. Be kind to yourself and be patient with yourself too. This is a great forum to be a part of.
thanks for replying (: and yes it is hard to understand everything happening, it’s lovely having a forum like this to talk to similar others
Hi, my 20 year old son gets his B12 injections since june last year. He is very sick. First every 72 hours, and now every 48 hours. You always have to start with 72 hours! He is injecting for 11 months now and no improvement so far. Look up on Google; B12 institute Roterdam for everything you need to know. Also in English. Also the other B's are important, they work together. And vitamine D, folic acid etc. Wish you all the best! And remember first the symptoms are getting worse when you start injecting. You can't compare to other people because everybody is different.
Start every 72 hours. That's important.
There is Benzylalcohol in Centrafarm, therefor people are using different brands like Takeda. Also the needles have to be long enough to get into the muscle. And write everyday how you feel in a journal. To see there improvement .
One other physical change I’ve experienced since my pernicious anaemia diagnosis is some premature whitening on my eyebrows. I didn’t take much notice at first but it’s something that’s more visible as more hairs have turned white. It makes it look like there’s a gap in my eyebrows- not the best! I was wondering if anyone else has had this and whether with time and injections the hair reversed colour?
i haven’t personally noticed that, it’s hard to say whether it is b12 related or not. I know of some people with premature greying of the hair who didn’t have anemia but perhaps it is?
I found a case report that mentioned patient got hair colour back after b12 treatment started when I searched online for "white hair B12 deficiency". Also looked at "grey hair B12 deficiency".
Research articles and case reports may have some details that could be upsetting.
I am 35 and was diagnosed when I was about 20. I too noticed that my eyebrows had gaps (hair turned white) now I am 35 and have loads of grey hairs too. There are that many I’ve decided to just let them grow.
As for symptoms, I still suffer from quite a few and only really notice a reduction in my symptoms after about 2 days after my injection and that usually lasts about 3 weeks then they gradually return. I am getting injections every 3 months but think after reading these comments that I might ask my GP about more regular injections.
I certainly sympathise with you for your age, in that you have developed a terrible condition so early in life. Bear in mind, especially if you read some of these posts, that everyone is different, so if someone experiences a certain condition it does'nt mean that you will.
Something else to remember is that you may actually improve with age as your body takes on the condition. I hope so and I hope you are able to live with the condition as best as possible and practicable.
Don't feel isolated, this site will show you that your not alone, and there is always someone out there worse off than you are. Try to fight it with a smile!!
I'm 65 and I remember when I was first told by the doctor, seven years ago, that I had B12 deficiency and that I would need to go and see the nurse to book up my 6 injections.
Firstly, I'd never heard of B12, and secondly, I thought that the 6 injections would sort out all my problems. When I had the 5th one, I asked the nurse whether that was the case, and was surprised to be told that no, they were just the loading injections and then there were maintenance injections every 3 months. For life !
That is when I really started to look up B12. I read Martyn Hooper's book about Pernicious Anaemia and B12 Deficiency, then I joined the pernicious anaemia society (which he started) and the forum here. A whole lot of learning went on !
Later, it was found that my folate and ferritin were low - not below range, but the GP thought low enough to add to symptoms. So that meant a course of supplements for three months and monitoring by blood tests every 6 months, so that the GP could say when to start again if necessary. It took a while to find the right balance. Also vitamin D was low - now on prescrpition.
These are important to have checked - as well as thyroid which can be affected.
We are none of us the same, and so it isn't possible to say for sure what will happen and when to expect it. What I can say is that I'm still improving even now - and that you will find the right way forward for you and your particular set of symptoms. Some call this stage "reversing out" - numbness is replaced by the pain of repairing nerves, which later will settle down.
Strange symptoms can happen (feel free to ask on here - between us, we've had them all !) at this stage - I started to be unable to identify smells correctly. So once truly believed that a local supermarket reeked of raw sewage and could not be persuaded otherwise ! Luckily my brain seems to have retrained now, although now and then I check with others. Some people get premature grey hair, or hair loss. This can grow back again when B12 level increases - I have seen a video where a woman, who had lost quite a bit of hair in the front, saw it grow back in at her old colour (dark) while the back had over time gone grey. Amazing things can occur - so there is certainly hope for your eyebrows !
Good that your GP knew enough to test you for B12. Hope you can get tested now for folate, ferritin, vitamin D and thyroid too, just for peace of mind.
I'm nowhere near your age but there are others here who are. On the pernicious anaemia society website, there is a Lecturer's information sheet: it explains what additional requirements a student with PA/B12 deficiency might have. I was a teacher in a college - and I put it up in the classroom - both so that the students had more understanding of what mght be going on with me, and also in case anyone either had the condition or recognised the symptoms and got checked. This might help you to explain to your friends what is going on with you.
This is not easy to get your head around - that is why GPs don't seem to know much, consultants aren't much better (some considerably worse) and friends/family can seem uncaring. Educate yourself first (slowly !) and then you will be able to help them understand you.
Thanks for your informative response (: In order to test for other items, such as Vitamin D and thyroid are these through blood tests as well?
Ill have a look for the information sheet on the pernicious anaemia society website as well, do you by any chance have a link to this? I am currently at university and although I have received great support, it may be useful to show them as well! I have explained some of my symptoms to friends but as there are so many varying symptoms which have been fluctuating I find it hard to get across to them just how impactful I am finding this condition so far
I definitely agree to check for thyroid conditions, also check for GI issues like coeliac, crohn’s ulcerative colitis, type 1 diabetes since these all are very comorbid with PA (they tend to go together more often than not). I don’t have any other autoimmune conditions so far other than PA but I’m aware that I may develop others at some point in time. Fortunately my doctors have checked for these things and will continue to monitor me as I age so if I do develop other comorbid conditions they catch it early.
Yeah it’s a good idea to! I’ve had stomach problems since last year, colonoscopy and mri scan came back clear. I’ve now awaiting an endoscopy as I’ve been having a lot of burning around my stomach and acid reflux. Gastroenterologist says this may be related to PA but may not be so will have to see
The Pernicious Anemia Society website has lots of useful information, and it easy to learn your way around the site. This link is to a symptoms checklist:
Vitamin D levels can be checked by blood test. Thyroid can also be tested this way. The NHS offers usually two checks: TSH and FT4. For a fuller picture, you may want to have FT3 and thyroid antibodies: anti-TPO, anti-TG. These can be done by a postal blood test with online results. I did this once just to make sure, as I have two sisters with Grave's disease, and a lot of close family with autoimmune conditions.
Wiscguy has left you the link to the Pernicious Anaemia Society website.
It is difficult to explain to friends, family, work colleagues etc what is happening to you, especially when you aren't sure what is going on yourself - or what might come next. Sometimes, I used to avoid people who knew me because of this.
It might help you (and them) to go through the more comprehensive checklists of symptoms published online - PAS has one, Tracey Witty's site has one. The ones given by medical professionals on the whole seem very brief - and this does not help GPs who then may try to find a closer fit to your symptoms : MS, anxiety and depression, CFS, ME, IBS, fibromyalgia, etc.etc. Which in turn doesn't help us get the treatment we need.
I personally cannot see a syndrome as any sort of true diagnosis - "syndrome" being just a name for a group of symptoms.
So much more work is needed on B12 deficiency.
Anything you want to know - just ask here. Always someone around to help.
I was diagnosed in my 40s, and I was actually sick when the nurse told me I had PA. And I did not even know what PA was. My gut knew we were in for a hard time.
Since my diagnosis I have spent three years researching health, nutrition and how to heal.
I took the SAS approach to healing and my healing whilst for a long time was unbearable, my recovery has been transformative.
I have eliminated all my symptoms, except brain fog which can still affect me a little.
can anyone tell me the main reasons why people like ourselves have developed PA? How is it that people at different ages people discover they have PA? What are the risk factors? I’m just curious and I’ve read a lot of different things whilst trying to wrap my head around it all
"How is it that people at different ages people discover they have PA? What are the risk factors?"
First, definition of terms. You will hear people say something like "True PA", vs. "functional B12 deficiency". "True" pernicious anemia is generally considered to be an autoimmune disorder in which the immune system attacks parietal cells in the walls of the stomach. If I understand correctly, parietal cells produce hydrochloric acid, which breaks down foods containing B12, which frees B12 for use by the body. The next step is B12 attaching to a protein called "intrinsic factor" (also produced by parietal cells), which carries B12 to the ileum, the final section of the small intestine, where it is absorbed through the walls of the ileum. When the immune system attacks the parietal cells, the ability to break down food (with stomach acid) is impaired, and freed B12 is no longer carried (by intrinsic factor) to the part of the small intestine that can absorb the B12. Hence, cells do not have B12 available for accurate cell production, and various cells of the body that break down are not adequately replaced by new cells. Of special significance historically was red blood cells. Old, deteriorating red blood cells were not replaced with healthy new red blood cells, resulting in a specific kind of anemia called pernicious anemia. That is what is called "true pernicious anemia". The test for "true pernicious anemia" looks for antibodies that the immune system makes to attack parietal cells, called "parietal cell antibodies". A positive test result (meaning that parietal cell antibodies are present) confirms pernicious anemia. A negative test result means parietal cell antibodies were not detected: about half of negative test results are because parietal cell antibodies are not present; and in the other half, people have pernicious anemia, but for some reason the test doesn't pick up on the antibodies. So a positive parietal cell antibodies test result confirms PA, while a negative test result does not mean that the person doesn't have PA, but rather means the antibodies required for a positive test result were not detected.Failure of B12 to be metabolized by the cells can be due to things other than "true PA": in these cases, you will hear people refer to "functional B12 deficiency". An example is a person having less stomach acid than is required to free B12, with insufficient stomach acid due to reasons other than parietal cells being attacked by the immune system.
Back to your question:
"How is it that people at different ages people discover they have PA? What are the risk factors?"
To quote Bob Dylan, "He not busy being born is busy dying." As we get older and older, more and more body parts and body functions are prone to failure. So one risk factor is age. An older person is more susceptible than that person was as a younger person. Another risk factor is already having an autoimmune disorder: a person with an autoimmune disorder is at greater risk of additional autoimmune disorders.
All of this so far is to ignore diet. The natural source of B12 is animals: meat, dairy products, eggs, etc. Another source is B12 supplements. People who do not consume "sufficient" (whatever that is) B12 are at greater risk of B12 deficiency.
I am not medically trained and welcome correction.
I think many of us today underestimate how much B12 the body needs to function. Stress can deplete our stores so any stress or trauma will ask alot of the nervous system. And it needs B12 to repair/stay healthy.
completely agree with your description of PA from a gastroenterology point of view. It is true, PA is autoimmune either with parietal cell antibodies or intrinsic factor antibodies. There is also the hematological perspective (in concert with the gastro point of view) that additionally often considers PA to arise with megaloblastic anemia (enlarged red blood cells), findings on blood work, symptoms of anemia and potentially neurological/psychiatric symptoms like tingling in the arms and legs, burning pain, fatigue, etc.
Thanks for your comment. I completely spaced out autoimmune attack on intrinsic factor, even though, as I understand things, that's by far the more common test. Just didn't occur to me. I am blaming the effects of B12 deficiency....
Tingling is a neurological symptom. I would expect your GP to put you on the treatment pattern outlined in link below for those with "neurological involvement" .
One thing that I usually urge UK forum members to do is to track down the local B12 deficiency guidelines for their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.
If you can't find your local guidelines online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to your ICB or Health board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some of these local B12 deficiency guidelines are not as helpful as they should be. I hope you are not in the area discussed in blog post below.
CCGs (Clinical Commissioning Boards) were replaced by ICBs in England last year. Some ICBs are using the B12 deficiency guidelines of the previous CCG.
Hi Ellamae2! I was also diagnosed around your age (19/20) and am 30+ now. It can be isolating since no one else around has the condition so there's hardly anyone to chat with about it. I did feel improvements after the jabs, it took I think maybe after a few months? It's great that your GP is supportive
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