Hey everyone. This is my first time posting and am really hoping for some advice, as I'm new to all of this.
I'm 25 and have had hypothyroidism since I was a child. I've had bouts of b12 deficiency over the years and pernicious anemia runs in my family over four generations, all women. For the last six months I've gotten increasingly more tired, until the level of exhaustion and dizziness got so bad that I collapsed while working a waitressing job. Since then the symptoms have only gotten worse - extreme tiredness that sleep doesn't alleviate, dizziness, shortness of breath, my breathing seems to have taken on this rhythm of shallow and loud sighs, nausea, my hair is falling out in clumps, I have pins and needs in my hands and feet, regular headaches, pains in my eyes and heart palpations. When I collapsed I went to hospital and they took my blood count and was sent home to wait for results to go to my gp. The hospital misplaced the results so it took two weeks to reach my gp and the exhaustion got worse and worse. I was still holding down the waitressing job, but had stopped cycling to work. By the end of each shift the tiredness left me feeling as if I needed to throw up and I would cry with the pain in my eyes from trying to keep them open. When the bloods finally came back, the doctor said my b12 levels were extremely low and started me on a loading dose of one injection per day, followed by one injection a week for six weeks and then one a month for six months. It was about three weeks ago when I started my loading dose. After about six injections, I started to feel a little better. However then I had a late night shift in work, couldn't afford a taxi home, so had to cycle. This was a big mistake, as I felt so much worse and the tiredness and breathing returned to the same level as before I started the injections. But it was as if my body hit its threshold and couldn't take anymore, so I called in sick to work and went back to doctor. The doctor put me on one month sick leave. The GP said my haemoglobin hadn't been taken in the original count and so took bloods for that. I had a holiday booked, and despite not being able to keep my eyes open, he said I should go and rest there. The haemeglobin results came back normal and he said my b12 was now also fine. I had explained to him pernicious anemia runs in my family but he said my blood count was fine and I could travel. I travelled to France to visit my cousin and after travelling last Thursday, have been in bed unable to move with the exhaustion ever since . If I try to keep my eyes open for more than about an hour a day, the tiredness gets so much I start to cry and the nausea and dizziness gets too intense. I'm still breathing in these short sighs, my hair is still falling out, I have the pins and needles and dizziness. On top of all this my mood is quite low from the consistent exhaustion that sleep just doesn't seem to help.
I'm travelling home to Ireland early as I feel too unwell and I'm going back to my gp. I'm pretty sure it is prenicious anemia as I've the same symptoms my mam and aunt had when they were diagnosed. But even if it is not that, and is b12 deficiency instead, I can't keep going with this level of exhaustion and don't know whaf to do. I'm supposed to be starting a masters in a couple of weeks time, but at the moment, I can barely walk. Any advice on what to do at all, would be so so appreciated. I feel so frustrated and sad and just so so tired. Is it possible to feel much worse before I feel better? Could the injections not be working?
I'm sorry for the very long post! Thanks for any help in advance
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Trudie1
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It can take a lot more than just six injections before some people notice any substantial improvement. As long as you’re given injections at a suitable frequency you should start noticing things get better.
There’s no point in testing for B12 levels once injections have started. And you definitely don’t want to allow your doc to use it to determine treatment.
There’s little difference in the symptoms of Pernicious Anaemia and other causes of a B12 deficiency. The treatment is the same (as long as the deficiency isn’t caused by your diet) no matter the cause - lifelong injections.
If you are still in France go to the pharmacy and ask for a B12 shot - they are not prescription only in France. You could also ask if you can buy some to bring back home with you for personal use.
Serum B12 doesn't really mean a lot post loading shots unless it comes back low - all it tells you is what is happening in your blood which is totally skewed from having the injections - it doesn't give a guide to what is happening at the cell level. Significant numbers of patients need to keep their B12 levels well over the top of the normal range - and for some of us well over the top of the measurable range.
If you had an improvement and it is now gone then that implies that you may be one of those that needs to keep B12 levels astronomic post loading shots. However, this is a phenomenon that most GPs seem totally unaware of.
Thank you so much for your response. So it could be that I need more loading shots before they're spaced out for maintenance? Is it possible for them to check what's happening at a cellular level? And could i still have pernicious anemia if my hemaglobin results came back normal?
I unfortunately can't inject myself so it wouldn't be much use buying them here, as I've to go to the district nurse to get them administrated.
Sorry for all the questions, I really do appreciate your advice. I'm at my wits end with this!
I am really sorry to hear of your distress . You have been deficient in B12 for so long that you just need a lot more injections .Pernicious Anaemia runs in your family , so it can be assumed that you have it too . It so often occurs with Thyroid problems too . Both conditions are auto-immune and seldom come singly . P.A. is not understood at all well in the medical profession unfortunately . That’s why the PAS. was formed. You just need many more injections . I’ve been through this myself , and just met a brick wall from my GP . So I eventually and reluctantly had to self-inject to get my health back. So be mentally prepared for that. You must also make sure to get enough folate / folic acid as it works together with B12 .
Once injections have started, retesting for B12 levels is useless. The readings will be high , whether or not the B12 is getting into your cells or not .
So try to get more loading doses from your GP Come back here if you can’t . You have friends on this forum . Very best wishes
it may be that you permanently need injections much ore frequently than the NHS standard (which doesn't seem to be based on any scientific background anyway - other countries using hydroxocobalamin suggest monthly as the frequency for maintenance shots.
You can self inject subcutaneously with an insulin needle and it really isn't that difficult. Not really clear why the NHS goes for just intramuscular.
Definitely try and get to a pharmacist in France before you go back as they can give you a shot at the pharmacy.
Yes, I inject subcutaneously in my tummy, not difficult, no pain either if you do it slowly and warm up the ampoule to body temperature. No more hassle to beg for more then GP wants to give you. I have made a note on my Medical App on my phone that I do so.
Some people use high strength sublingual (under tongue) B12 lozenges and some use B12 patches. Personally I found the best response from injections; patches and sublinguals had little effect.
Hi hun go to a and e u be dealt with faster it's a vile place to be bee there my b12 low and hobaglobin very low had the same as u in the end went t a and e were I had a 4 day stay so they cus the symptoms I was having and I got the same as u say ue mum and aunt have hope u feel better soon xx
Thank you Megan. I've already been to A&E. They took bloods and sent me home, the blood results then went missing for a few weeks and when they finally sent them, turns out they hadn't even checked my haemoglobin. So I'm reluctant to go back there, when I know it's that I need more injections, I don't think they'll help me.
I was very low in b12 and was started on injections without any testing as to why it was low. I have always been on 3 injections every week since last January. I have tried to go down to 2 but after a couple of weeks I have symptoms start to return. I also have just learned that after having an infection from some sort of bite and being on antibiotics I need to increase my injections. I’m guessing that I will most likely be on 3 per week for good. Some people have been injecting daily for years. Good luck and hope you are feeling better soon!
Hi Trudie, sorry to hear you have been suffering so much. I was diagnosed with PA a couple of years ago thanks to a very vigilant GP. Like you I was worried as my loading doses seemed to be having no effect and symptoms such as muscle twitches weakness mental fogginess and extreme tiredness were not abating. It was only after about 3 months of daily injections that I turned a corner. Now on monthly maintenance doses and that seems to work well. But it's a very complex condition individual to everyone. I know that things like physical exertion, stress, a few drinks...all deplete me very quickly. Be patient. Ask for advice here. This forum gave me lots of reassurance and sound advice which helped get me through some tough times. Hope you turn a corner soon.
With PA in the family, have you been tested for PA?
In UK, Intrinsic Factor Antibody test is used. Still possible to have PA even if IFA test result is negative/normal range.
Coeliac disease
NICE guidelines Coeliac Disease (2015 version), a UK document, recommends that people with unexplained B12, folate or ferritin deficiencies should be tested for Coeliac disease.
If you suspect PA, may be worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries. They can offer support and info about PA. In some cases they can intervene on behalf of PAS members.
Best piece of advice I ever got was to always get copies of all blood test results. In past I was told everything was normal and when I got copies I found abnormal and borderline results. Some people on forum get complete set of medical records. Can be very interesting to see what GPs have written in past.
It's vital that you get the right level of B12 treatment as under treatment can lead to further deterioration including spinal problems. In UK, people with B12 deficiency with neurological symptoms are supposed to have more intensive treatment. I assume the same is true in Ireland.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Trudie....my heart goes out to you....I actually had a similar response to injections....initially did great and then a cascade of symptoms including dizziness, low mood, terrible anxiety, heart racing, chest heaviness. I researched and believe i may have become stuck in what is known as the Methyl trap.....I was on Methylcobalamin, both injections and between them on sublinguals. And when you are making new blood cells your potassium levels can be used up very quickly which can be addresses by drinking coconut water, eating bananas, using lo salt and eating potassium rich foods like prunes, potatoes, raisins. It is VERY VERY important to keep you potassium levels up and when I did my symptoms greatly improved. I also took non flush Vitamin B 3 (niacin 100mgs as needed every hour) to bring down the racing heart and anxiety and it worked, which is a protocol of Dr Ben Lynch. Get a pal to go out and get you lots of coconut water and the Vit B 3 and see how you do on it. Google Dr Ben Lynch's info on Methyl/Folate trap. I have now totally pulled back on injections and sublinguals and am taking a small dose of B12 in Hydroxycobalamin form and have added a small amount of Folate in tablet form. I plan to increase very slowly to see how i go. I am also sending away a lab test today to see if I have an MTHFR mutation which might help me better tackle my deficiency by identifying if i have the gene. Hugs. J.
I'm so sorry to read how ill you're feeling. I felt exactly the same when I was diagnosed with PA. I found folic acid cured the breathing problems. I was in India when I was diagnosed. As I was in the South and many people are vegan they had a much better understanding of how B12 deficiency affects people than we do in the UK. I was on loading doses followed by bi weekly injections. I moved back to the UK last year and am self injecting rather than constant battle with my GP. I really feel for you and hope you feel better soon.
Thank you so much to everyone for your words and advice. It's made me feel so much less alone with this. I had an injection in France and going to my doctor tomorrow to try organise getting loading injections more regularly.
My preference when I had queries about treatment was to write a brief, polite letter to GP which contained supportive evidence eg symptoms, relevant family history, extracts from relevant B12 documents.
In UK, letters to GP are (as far as I know) supposed to be filed with a patient's medical notes and are therefore a record of issues raised. I don't know if the same is true in Ireland. In my opinion, letters are much harder to ignore things said in a face to face or telephone appointment which may be forgotten or not recorded.
Might be worth following up your appt with a letter. I sometimes sent letters to GP before an appt. to give them time to think about what I wanted to discuss.
Words of warning...sometimes being a more assertive patient can affect GP/patient relationship. Personally, I gave up worrying about this when I realised if I didn't get treatment I was heading for dementia type symptoms and possibly permanent neuro damage.
Might be worth trying to speak to PAS (Pernicious Anaemia Society) before your appt. Best to phone. You would need to be a PAS member, costs about £20 for a year. They can give support to people seeking PA diagnosis and pass on info about PA. They have some members outside UK. Don't know if they have many Irish members.
I came back early from France as I was so unwell and saw the doc today. My GP is currently off sick and so I had to see a locum doctor. He told me that after taking the blood tests last week, my b12 levels are at 2000 and said I no longer need anymore b12; although my own doctor had prescribed a further four weekly ones and 6 monthly. I told him that maybe the b12 levels were high in the bloods because I'm getting the injections, but this may not mean they're reaching a cellular level. I also still have the symptoms - exhuastion, pins and needles, dizziness, hair loss. and so requested more regular injections. Instead of doing that, he's stopped my injections altogeher. He said that unless I had really advanced PA, I wouldn't have pins and needles. He said he thinks my symptoms are all psychosymatic and I've just "latched on" on to this idea that it's the b12. He then offered me a sedative. A SEDATIVE. I can hardly stay awake, I do NOT need help sleeping.
I sat in front of him crying and he agreed to refer me to a haemotologist but he said from the blood results, there's nothing wrong with me. He even said that my b12 wasnt that low in the first place, although my own GP had said it was very low. it was 146 when they took bloods a few weeks ago, before the injections started.
Despite the history of PA in my family and my own hypothyroidism, he said my blood results show no indication that I have PA. He may he right on this, but I am certain I'm still experiencing b12 deficiency due to having the symptoms and due to the fact that when I was getting more regular injections, I was feeling better.
I feel so upset and angry. I now have to wait to see the haemetologist but have no idea what to do until then. I'm still out of work and don't feel fit to go back to it and I'm supposed to be starting classes at uni next week, but I can barely function with the tiredness. What do I do now?
I had 12-16 injections (1 per week) before I noticed improvements and carried on 1 injection per week and symptoms started to disappear.
Also make sure your Folate and Ferritin is ok.
You may benefit from taking Folic Acid if you’re not low 400ug 1 daily as you’re injecting B12. If you’re low you might need higher dosage of 5mg Folic Acid.
Low Folate or Ferritin causes fatigue.
Also good to get Vitamin D levels checked and blood test
As you must already be aware Thyroid can cause extreme fatigue also.
They ARE working. It's not a miracle cure. The body needs time to repair and recover, sometimes many months. You just persevere and gradually you get better.
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