Hi all, I was diagnosed with B12 deficiency and pernicious anaemia a few years ago. I would have been diagnosed much sooner had my doctors surgery not incorrectly marked my diagnosing results as 'no action needed'. Anyway...
I have been receiving periodic injections since 2015 which began as 12 weekly. I was not feeling a significant enough improvement to my symptoms and a doctor at my surgery then changed my dose to every 6 weeks. I was also told that a blood test showed I was a bit anaemic. I was given some iron tablets for 3 months and had a follow up blood test. These results came back with no action. I contacted the doctor and said I felt no better. I was then told that my iron levels were the same as before the tablets and that the levels are fine. So why was I told I was anaemic before if my levels were fine then and they are fine now?
I continued to have my 6 weekly injections, still not really feeling the benefits and being told my b12 level was 2000. I have avoided having an injection since October, and I feel no different to how I would had I continued receiving these injections.
I constantly feel like I'm on the edge of getting a cold, my throat always feels slightly puffy, but never sore, I always have a mild headache, I am always utterly exhausted and could fall asleep at my desk at the drop of a hat.
The last few weeks have been almost unbearable. I don't know where to go from here as I don't feel like I am taken seriously by any of the many doctors at my surgery. I am always told my low energy might have something to do with my anxiety which at the moment is the lowest it's ever been, yet I'm still exhausted. I have constant tinnitus.
I have a non toxic multinodular goitre which I have been told does not need following up. My thyroid function has apparently been checked and is normal. My kidney function is apparently normal.
I do not know where to go from here. If anyone has any advice I would be so grateful
Thank you
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LizzieRb12
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Surely if you have been diagnosed with pernicious anaemia you do need B12 injections for the rest of your life. I don't understand why you have avoided them. Also sounds as though you may need a copy of your blood results as I've been told everything fine when actually it wasn't. As I understand it once you are on regular injections your B12 leveks do not need to be checked. But now if you haven't had a B12 injection since October is the time to get your B12 levels checked. Can you change doctor? I do hope you can get the right blood tests soon and get sorted .Get a copy of them. Sounds awful. I wish you well
Hi Nackapan, thank you for replying. I think I will do as you've suggested and request a copy of my blood test results going back 5 years. I have seen multiple doctors at the same surgery so if I can't get the help I believe I need I will have to change surgery.
My main problem is that I don't know which tests I should be asking for and if there may be another condition on top of the b12 and PA.
I would request everything from full blood count to iron screen folate vitamin d and other vits. A thorough thyroid test. If you managed to get a new doctor they would start from scratch to know how to help you. Or speak to the practice manager at your present surgery. Book a double appointment and take someone with you. Only suggestions but difficult to think straight when you so poorly.
Thank you so much for this advice. I think I will need to write a letter to the practice manager as I have been told we are not able to book appointments until 8am the day of the appointment.
I will write with my request for copies of all results from 2015 onwards and request a fresh set of all of these tests and request i am booked in for a double appointment.
I really sympathise with you on the question of getting an appointment we have this 8am system - it’s a nightmare if you don’t naturally wake up early. I’m a late riser and it takes me a while to get my head together. Do you have an online appointment system as well, I find that helped me a bit. I hope you can get sorted soon.
I hope so too. I don’t want to demotivate you but I wrote to mine in desperation and I got very short shrift I’m not even sure she read it. But you may have better luck than I did. But do try and get an appointment too. I wish you well soon.
I have the 8 am appointment system too and rarely get an appointment. I do request a telephone consult. Also ask if ypur sugery does any previous bookable ones. I had to do that usually 3 weeks in advance so at least one in place if you still can't get one on the day
Nackapan is right. Always get your blood test results. My internist told me my last liver scan was fine, not so, I got a call from radiology asking me to come in for a CT scan. I no longer believe this doctor about anything. When I saw mine that was over 1,000. I thought I had too much vitamin B but at least the tests I do, the higher number meant my body wasn't absorbing it. This may not be the case with your test but it might be a good idea to check.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
LizzieRb12. Avoiding having your B12 injections may be counter productive and damaging to your health. B12 levels are always very high when on injections and are no indicator of the efficacy of treatment. Injections should never be stopped because blood levels are high and once injections have started, there is no further necessity to check serum B12 levels (as per BCSH diagnostic and treatment guidelines).
Please to re-start your injection regime at the earliest possible opportunity - when you have PA, B12 injections are for life.
About your continuing symptoms - may be due to low ferritin levels - can you get the results and the reference range from your GP and post them here for further advice? It's a bit puzzling that your GP should treat you formiron deficiency anaemia and the not treat you - when the levels remain at the (presumably) same low. If you are still have iron deficiency anaemia, this may be causing your symptoms. Good idea to see your GP and discuss again.
Also - have you had your folate and vitamin D levels checked? Those with PA often suffer with other deficiencies and these are prime candidates - and deficiencies in either can have similar symptoms to B12 deficney, so worth seeing GP and asking to have those tested.
About the goitre - worth asking about that on the ThyroidUK forum:
About thyroid blood tests - doctors often test just TSH and my understanding is that thwt is insufficient to give a full picture of what's happening with the thyroid. To get a full picture, tests should include TSH, FT3, FT4, and thyroid antibodies TPO and Tg. Doctors often say thyroid tests are normal when they’re not - and if,your thyroid is not functioning at an optimal,level, then that may be causing some of your symptoms. But you'll get better advice on the thyroid forum, somsuggest you post there - especially for information and advice about your goitre.
I think you’re lucky to have a GP who will prescribe B12 injections every six weeks - most won't - and it shows that they do have some understanding of vitamin B12 deficiency 😉😀. So perhaps it's worth persevering with these doctors for a while longer before you consider changing.
Perhaps you could make a list of things you want to discuss - perhaps including tests suggested above and discussion about the lack of treatment for potential pre-existing iron deficiency anaemia. You certainly need more clarity about what’s going on with that.
You could also point out that low energy may be associated with both iron deficiency anaemia and with B12 deficiency...and that you are understandably anxious because of your ongoing symptoms and poor health (i.e. you are most likely anxious because you are ill...rather than ill because you are anxious - there's a real big difference here 😉).
Your GP's should really want to help you get well and giving them a bit of a steer with the ideas and questions to ask, as per above, may help them to help you.
Very best of luck and please do re-commence your B12 injections - you will surely and eventually become very ill if you don't 😐.
👍
P.s. forgot to say...no point in having your serum B12 levels tested - you have PA and should be on injections whatever your serum B12 level (and it may still be raised from your previous injections - but this does not indicate that you are no longer B12 deficient or that you no longer need B12 injections 😉).
Thank you for such a thorough and considerate response. I am not very good at voicing concerns with my doctor... I usually just end up crying, apologising for it because I'm tired and come out of the appointment without being any further forward.
I think in order to get my points voiced, I will write a letter to the GP who knows their stuff of b12 and also the practice manager and request a double appointment to discuss all of my concerns. If I get an appointment following this I can then take a copy of my letter and go through point by point
Thank you so much again. I'll let you know how I all get on if at all!
Good luck. Be brave, be strong. And don't worry if you cry. Just have a list you can follow and go through it point by point.
Also a good idea if you can take someone with you knows you, is aware of your concerns and health issues, and who can support you, if needed (but only if this would help you - some prefer to deal with these things privately 😉).
And just left a p.s. on my previous reply, in case you haven't seen it.
Be good to hear how it goes and do put up a new post if you need any further help. Sometimes it's really tough dealing with these things, especially when feeling so ill 😉😐xx
I recognise you’re frustration as after being diagnosed with B12d (not PA) and being treated for over a year I had some improvements in symptoms but I still felt terribly tired and weepy and frustrated, as despite my best attempts to get my GP to take this seriously, he decided I was ‘just’ menopausal. Eventually my husband looked up my ongoing symptoms and suggested it could be vitamin D deficiency. It turned out I was seriously deficient! The Calcium/ VitD tablets my GP prescribed didn’t have any real effect but I coincidentally got to speak to an endocrinologist who said ‘use the sublingual (under the tongue) spray from Holland and Barratt my wife uses it every day!’ It got my levels up really fast.
You can’t overdose on VitD and the majority of the population in the Western Hemisphere are deficient especially in the winter. We just don’t get enough vitamin D creating sunshine here and there is limited natural vitamin D in our food. I assume I don’t absorb these vitamins well through my guts, so it makes sense to supplement this way. Fingers crossed your GP looks at other potential causes and this can be this easily sorted out for you.
there are a number of issues around diagnosis of thyroid problems - including the over-reliance on TSH without doing a full thyroid panel, and, as with B12, the blind application of what is also quite a significant variation in range.
Serum level of over 2000 doesn't necessarily mean anything - certainly no guarantee that you have sufficient B12 available at cell levels. The more interesting issue is whether you notice any improvement at all in symptoms after a B12 shot, even if it is for a very short time - my symptoms start to return within 24 hours.
Thanks so much for replying. It really does make a difference knowing I'm not alone. I'm going to contact my GP by letter and hope I get a little further forward. I can't say that I have noticed an improvement following injections.
Another strange thing is that about 5-10 minutes after an injection I get intense throbbing in my lower jaw just below my teeth. It feels as if it did when I was younger and used to have my braces tightened. It lasts about 10 minutes and then subsides. J mentioned this to one of the nurses at the surgery and they were baffled and looked at me as if I was mental!
Advice from across the pond. Two things, with pernicious anemia your stomach is lacking acid and will not absorb nutrients well. I take vitamin C, capsules not pills, pills will not absorb. Vitamin C greatly increases your ability to utilize nutrients, especially iron. I took iron for years without result. On the vitamin C, no problems. Second thing, do not accept being told a thyroid with goiter is normal. You may have Hashimoto's thyroiditis, thyroid levels can be unstable. The trouble with the thyroid test is that they usually just do the TSH, which all doctors think is wonderful. It is not sufficient and, in reality, shows how your thyroid was functioning six months ago, not today. So please, keep checking that thyroid.
My doc in USA checks blood levels once a year for everything just to continue with prescription meds per insurance company. I have no thyroid due to radioactive iodine treatment due to hyperthyroidism and was diagnosed with PA after testing anemic 10 yrs ago with antibody test positive. My b12 at time was 159. After treating with b12 injections every 2 weeks for years my b12 labs never get above 450. I guess I don’t understand how ur B12 could be 2000 with PA?
Hope I'm not repeating something someone has already told you but doesn't your surgery do online booking appointments? Mine does and you can get to choose when you want it. It also shows when any appointments are free.
I know we have an 8 o'clock same day appointment system for emergencies, getting to see my named doctor is a 2-3 week wait by the phoning in system but you can drop lucky with a canceled 1 online .
I wish you all the very best, I just want you to have your next B12 injection as there are so many nasty things Pernicious Anemia can do without you noticing until the damage is done.
Hi all, I've managed to nab a doc's appointment this morning. I've written a list and will be taking all your replies on my phone with me to help remind me what I need to fight about.
Hi everyone. I've seen the GP and they've decided that there's nothing physically causing my fatigue and that the cause is depression. I told them I wasn't depressed or anxious and I'm happier than I have ever been, I just can't shake the exhaustion. She said in response that I was quite teary, I said I was teary because I'm so tired. She sat for about 5 minutes not knowing what else the suggest and prescribed me with anti depressants and gave me another blood test form for everything that they've checked before. B12, iron, FBC, terrorism, glucose. All of these have come back normal every time so I think she was just giving me this to try and appease me.
I don't believe I'm depressed.
I requested further screening for my thyroid and was told they would only do that if my Thyroid Function came back abnormal, which it didn't.
I am at a complete loss. I don't know what to do now.
Have you re-started your vitamin B12 injections. This is vital...those with PA MUST have lifelong treatment via B12 injections.
Once you've already had injections (as you have) serum B12 levels are meaningless (all guidelines say no further testing necessary) so if your B12 levels are within range (as they may we’ll be because of your previous jabs) this does not mean the you no longer have B12 deficiency. Also - it doesn't mean that you no longer need injections or that you only need them when your levels drop below the reference range.
You have PA. You need B12 injections to keep symtpoms at bay and stop neurolgical damage occurring. You can get symtpoms of B12 deficiency even if B12 levels appear 'normal'. So...
Your tiredness may be linked to the fact that you are not having B12 injections. And if you have already re-started them, it likely means that you need more frequent injections.
Also - always worth posting updates in a new post - people don't often return to old posts so anything added to older posts is rarely seen by the forum - and the opportunity for getting new comments and support is missed 😉😀.
Please get your B12 injections - can't stress how important this is 😉.
If for some reason your GP is withholding these, contact the Pernicious Anaemia Society and ask them for help.
Hi!! Thanks for replying. I had an injection on Monday and have written down when my next one is. I have never missed one before and will of course carry on
My difficulty is that I feel the same level of tiredness constantly. I have been having injections for 5 years and it was upped to every 6 weeks about a year ago.
I just feel like a 95 year old woman trapped in a 25 year olds body!
I have ordered some multivitamins online which have had some good reviews to see if it may be other vitamin deficiencies at play in addition to the PA.
I think I will also change GP surgery as I have exhausted all options with them and they just don't seem to understand. Thank you for the advice about contacting the PA society, I will certainly do some investigating
LizzieRb12. The NHS 'one-size-fits-all' treatment regime fails to recognise that many people need more frequent injections of B12 for get and keep well...as you know.
Some people here need to inject every day to get and keep well...and injection frequency is a very individual thing.
As a general rule, if your symptoms return before your next injection is due then abate once you have another jab, then this is a sure sign that you need more frequent injections.
Here's a poll previously conducted by the PAS. You. I’ve find it interesting g because it clearly demonstrates individual differences in terms of frequency of injections (though nobody yet knows why this should be so):
Unfortunately, tiredness is a common symptom suffered by many with PA or B12 deficiency from other causes and I think it's worth exploring whether more frequent injections would help you. Unfortunately, many doctors do not understand B12 deficiency so getting more frequent injections from your BP may not be easy (doctors who do understand B12 defi cent have no problem prescribing more frequent injections - but this is rare - unfortunately. Many here turn to self-injection to top up between GP prescribed B12 injections - but what a shame that we have to resort to this to remain symptom free. Members here can advise about that if it's a route that you decide to go down.
And yes...those with PA and B12 deficiency often have absorption issues and hence may tend towards other deficiencies too...which can make you feel very tired and unwell. The main culprits are iron deficiency anaemia (low ferritin would be one marker of this), low folate and low vitamin D. Somworth getting your GP to check these for you. Worth noting that those with PA should have these checked annually.
You shouldn't be feeling like this at 25 years old and Imwoild hope that your GP has done other investigations to make sure that there isn't anything else going on healthwise.
Thyroid function and the presence of your goitre May play a part here. To assess true tyroid status you need to have a full,thyroid panel blood test - TSH, FT3, FT4 and thyroid antibodies TPO and Tg tested - and GP's rarely do this full panel. In view of,your goitre and ongoing health issues, think if it was me I,d ask to be referred to an endocrinologist for further advise and more detailed investigations (it's your right to ask for a referral).
I am a thyroid dunce, so the best to ask about thyroid issues is on the HU thyroid forum, which can be found here:
Whatever's going on, your GP should want to help you...and falling-back on the 'it's anxiety' or 'you must be depressed' old chestnut is not helpful (though both can be symptoms of both B12 deficiency and thyroid issues 😉).
So...changing surgeries may bring benefits though there are no guarantees that a new doctors would be any different...just the hope that this would be so. And some do swop GP's with very good outcomes, so fingers crossed if thwt's the route you decide to go down.
Very best of luck with all of this and pop up a new post if you need and further advice or support.
I would try a nutritionist or homeopathic doctor. Keep going to find an answer . I am with different symptoms but amy sick of being offered antidepressants. I wish you energy and some answers
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