I'm 26 years old, used to be healthy and active, now have been living with chronic pain for at least 9 months that has completely zapped my life energy. Muscle stiffness and joint soreness, some bad issues with soreness around a tendon in my left foot and also my right hip, causing a lot of pain, I can hardly walk some days stiffness is so bad in the morning and evening, and after any period of inactivity. Constant tiredness, no appetite, depression, referred to CBT , given anti-anxiety medication, had my thyroid function tested (normal), standard bloods (normal).
When the physical symptoms became hard to bear which was what ultimately led me to really push for answers/treatment, it took a couple of doctors to get anywhere, but the second Dr noticed I had psoriasis (increased risk of arthritis) and referred me for pelvic xrays, fibromyalgia was mentioned but I didn"t have any 'tender points' at the time of her examination. Xrays showed nothing and I tested negative for both the rheumatoid and inflammation factor in my bloods. I was told that this alone couldn't rule out rheumatoid arthritis so she referred me to a rheumatologist.
I waited 2 months and my appointment was cancelled on the day and put forward another 2 months time. I cried as I walked from the hospital back to my car. How was I supposed to carry on like this?? I'm a student veterinary nurse and we wouldn't allow an animal to suffer this way. Aware of the harmful effects of Ibuprofen when taken regularly I didn't want to take it so I asked the GP for codeine and she put me on repeats of codeine phosphate 30mg. It did little to ease my pain but at least lifted my mood enough to feel that life was bearable. I soon began taking too many too often and stopped altogether. Ive since been mostly without pain relief, occasionally on a bad day in work I take Ibuprofen. Worried i'll over exert or put too much pressure on my bad foot.
When I finally got my appointment the rheumatologist was baffled. He pointed out the painful spots on my foot and hip (I nearly hit the roof when he pressed there). He found no joint inflammation. He referred me on for ultrasound scans of my hands and feet to rule out arthritis and a follow-up rhematology appointment in August. He also sent me for a shedload of bloods! 4 tubes ! I actually got a phone call the very next day from my GP about the bloods, informed me that my B12 tested low at 150. I assumed it was because of my vegetarian diet but he said not necessarily, they were going to do a further test for pernicious anemia. I tested positive for the intrinsic factor antibodies and needed B12 injections for life, and also they have given me a gastrology appointment to be scoped???
So that brings me to now and I have finished my 6 loading dose injections today.
When I found out about the PA my feelings were all over the place, but ultimately I couldn't get jabbed with B12 quick enough at the thought that it was going to be a 'cure-all'. I was in quite a bad depression at the time of my diagnosis. I had a couple of really good days following the first injection but I have to say I think it was placebo because I feel no better in terms of joint pain/stiffness. I would say there has been an improvement in my mood and also I am less fatigued. And my resting heart rate has gone down. But the rest is still there. And when i've mentioned it to the nurses when getting my jabs they have both said sort of maybe its something else?? So now I feel like I'm back to square one and I actually haven't found a diagnosis, I am having a terrible day today, worst in a while, and I just feel like I am going to have to live my life like this.
I am due to start at a new job in less than 2 weeks and I just feel like I don't know if I can do it... working with animals my job is very physical.. also I am losing the security, sick pay etc I had with my other job I try to do things as normal as possible and get on with my life but sometimes I don't accept my limitations and it gets me into bad situations like this...
Could pernicious anemia be my diagnosis, will the B12 fix me... that would be really great if it did.
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Checcistar
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Could PA be your diagnosis? Absolutely. Definitely. A positive test for anti-IF antibodies is a pretty good indicator of PA?
Is it responsible for all of your symptoms? Maybe. Autoimmune diseases like PA tend to be present together, so you may have something else. Your doctor should run a load more blood tests looking for likely antibodies.
Will B12 fix the symptoms that are due to PA? Probably not all of them however, you should find that some of them do improve quite a bit. My mood and energy levels are way better than they were last year.
As well as the B12 you'll want to take several other supplements. Folic acid, a multi-B vitamin and a multi-mineral as a start.
You say your thyroid result was normal - what was actually tested and what was the result - with the range ? Were your thyroid anti-bodies tested ? - Anti-TPO and Anti-Tg. Auto-immune thyroiditis is the most common of thyroid conditions so testing will prove it one way or the other. Doctors say normal - when they mean in range. It is where you are in the range that is important.
Often GP's only test the TSH which is a pituitary hormone and it is not the full story of how the thyroid is performing. TSH stimulates the thyroid into producing T4 - which then has to convert into the ACTIVE thyroid hormone T3. Every cell in your body needs T3. Also when Ferritin - B12 - Folate - Iron - VitD - are all low in their ranges the conversion from T4 into T3 is poor.
I am not a medic - just a Hashimotos sufferer with a B12 issue
I've always been self-employed and worked with animals: mostly dairy, beef, sheep and horses.
I'm 43 and only got my diagnosis and treatment last year but have had crippling symptoms that at times (particularly in my early 20s) have made me bed-ridden for weeks at a time.
3 years ago I broke my leg (kicked by a heifer) and didn't believe I could have broken it because it didn't really hurt anymore that the arthritis in my other knee! (So much so that, in conjunction with NHS bungling, I didn't get it plastered and just borrowed crutches and carried on, including showing cattle).
So to you...
Good points:
You already have a diagnosis and you are young so haven't had so long for your nerves to be so badly/permanently damaged.
Because of your animal work you have an understanding of the importance of minerals and vitamins, you are used to handling injections and are mentally strong at coping with new situations.
You work with vets who have some of the best knowledge available and who I turn to for information. You can also readily get needles, syringes, sharps boxes, etc!
B12 is very safe and so you won't harm yourself if you take more than you need, giving you the opportunity to experiment to find what works best for you.
In time - months - nerves do heal and that includes those in your brain. The cofactors you need will also help repare the nerves and balance your feelings.
You have found this site!
I think there is every chance you will have a greatly improved life in all respects if you continually get enough B12 and the supporting cofactors required to metabolise it. Some people have been getting regular injections for many years and two people have told me they have been injecting daily for 38 and 45 years!
Your challenges:
It is very hard to get the support and treatment you need from the NHS, however there is support here and on Facebook and the things you need are easy to get and reasonably cheap.
You will get good days and less good days so will have to manage your work load and factor in rest time but this is much better than the current situation where you don't get the good bits!
There may be other autoimmune problems going on - but lots of B12 and cofactors will give you the best chance of coping with these so it's a good place to start.
You will probably have to take your treatment into your own hands and this may mean self injecting quite frequently. In practice this isn't anywhere near as bad as the thought of it! There are also sublingual tablets, sprays and nasal sprays available which help.
I'm sure you will benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium.
I also need to obtain a wide range of amino acids and have had to increase the amount of meat I eat. I seem to be extreme so hopefully if you are careful you will be able to get enough from seeds and nuts, dairy products and eggs.
For more information you could look up my profile and see my post "My Experiences".
There is light at the end of the tunnel now so go for it: get yourself better with lots of B12, etc!
Let us know how you are getting on and don't be afraid to ask more questions! x
You say "So that brings me to now and I have finished my 6 loading dose injections today.."
It is still very early days in your P.A. treatment and it may be that things will seem to get worse as the damage caused is being healed and as fbirder says you'll need "to take several other supplements. Folic acid, a multi-B vitamin and a multi-mineral as a start." and as you are vegetarian you will not be getting B12 naturally from your food.
An extract from the BCSH Guidelines reads:
Treatment of cobalamin deficiency
"Current clinical practice within the U.K is to treat cobalamin deficiency with
hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn... drugs-used-in-megaloblastic-anaemias.htm). Standard initial therapy for patients without neurological involvement is 1000 ug intramuscularly (i.m.) three times a week for two weeks.
The BNF advises that patients presenting with neurological symptoms
should receive 1000 ug i.m. on alternative days until there is no further improvement.
However, the GWG recommends a pragmatic approach in patients with neurological
symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment."
It might be worthwhile going back to your doctor and ask for further B12 injections until there is no further improvement.
I went for thirteen years from gastric surgery in 1959 to P.A. diagnosis in 1972 and it was many months before I can say I began to get back to "normality" but 44 years on I'm still "clivealive" at 75 next month.
I hope you manage to feel well enough to tackle your new job and wish you well for the future.
Hello Checcistar. I'm so sorry that you're having such a tough time. B12 deficiency / PA is a nasty and tricky thing to deal with.
I'm new here and, like you, I was in a pretty bad state when I arrived.
Fbirder and Marz and Deniseinmilden give good advice: it's important that you get screened for other autoimmune conditions, since these often go hand in hand with PA / B12 deficiency.
I notice you say that you've just finished your loading doses? What regime of injections are you having now? I ask this because it's really important that if you have neurological symptoms, you should be having B12 injections every other day, until no further improvement takes place (as per BNF, NICE and NEQAS guidelines etc. Neurological symptoms may become irreversible if sufficient treatment is not given in the early stages. Your GP may not be aware of this!
I'm sorry but I don't have the brain power to list lots of links to guidelines but if you click on my username it'll take you to posts I have written. The first one, in particular, contains lots of very good information that people here have shared with me. If you trawl through, it will give you a very good basis to start understanding this 'thing' and, more importantly, give you a way to start dealing with some of the issues you will come across.
Here are a few of the pitfalls that you may encounter:
Many GP's / practice nurses are reluctant (and sometimes even hostile) to giving the amount of B12 some people need to be and stay well. B12 is not toxic, and you cannot overdose on it. Many will not be aware of the guidelines for treatment. Which brings me back to information: you may need to print off guidelines and take them to your surgery so that folks can be educated.
GP's tend to go on serum B12 blood levels and may withdraw treatment once these raise. The important thing here is that high serum B12 levels are simply an indication that treatment has taken place. Guidelines state that high levels should not be used as an indicator for treatment unless levels are LOW, in which case you should have more B12. Your GP should treat your SYMPTOMS, not your serum B12 levels. Treatment should NOT be withdrawn if your levels are in 'normal' range, or higher. Again, your GP may not know this.
As your are probably realising by now, the key to achieving good health is getting enough B12.
Many people here have had difficulty getting their medics to supply enough B12 to keep well and have found that the best route to health is to get supplies and self inject, usually as a last resort when all else has failed. It's worth saying that this is not illegal, again, you cannot overdose. In Europe, B12 injections are freely available from the chemist and suffers can inject as often as they need to, to remain well.
Two books that I have found really helpful are : Martyn Hooper's 'What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency and 'Could it Be B12' An Epidemic of Misdiagnosis', by Sally M Pacholok and Jeffrey J Stewart (both available from Amazon).
Two other good websites are b12deficiency.info and b12d.org.
Please remember that there are people here to support you. If you post questions someone will always reply. Help can also be given with interpreting blood results.
A thought: GP's will often tell you that your results are 'normal'. This may not always be the case since levels bumping along the bottom of the 'normal' range are not good enough for people with B12. So...suggest you always get a copy of any results so that you can look at them yourself (and ask here if you need help).
The good things on your side (as Deniseinmilden says), you have had a quick diagnosis, you're young so problems may not be too long standing, and you've arrived here!
At the moment, you're probably feeling really ill and 'low' so it will be quite difficult to take in all the information coming your way. Please take heart, it really does get easier!
Just know that there are people here to help.
I wish you the very best but more importantly, a speedy return to good health.
Please post again so that we can see how you're doing.
P.s It's worth saying that as you have PA, you will not be able to absorb B12 from your diet, and will need injections for life (really not as bad as it sounds).
Hi have they checked your Vit D levels as joint pain is one of the main symptoms (lots of others overlap with B12 too). My B12 is on the low end of normal and I've just had my 5th loading dose and whilst some of the symptoms have eased the joint pain hasn't. My GP agreed to check my vitamin D as a friend had told me about the symptoms being similar and the result came back to say my Vit D was insufficient. I've just started dosing myself up and hoping it does the trick because I can't function properly yet despite the loading doses of B12.
Hi Checcistar,
It sounds like the Rheumatologist did a full autoimmune screen ( ANA, ANCA, Complements, CRP, ESR etc ) if they took 4 vials of blood. Many of these test take a while to come back from the lab as they are specialised.
I had low B12 ( 75 ) and Vit D at the start of my auto immune illness, replacing both made no difference to my symptoms. 4 yrs down the line I have a diagnosis of Spondyloarthropathy ( women present differently than men with more peripheral disease in hips and shoulders ) with features of Behcets Syndrome, a rare type of Vasculitis. Biologic drugs are making a difference to my symptoms.
I think it's very easy to attribute all symptoms to B12 deficiency when there can be something else underlying it. I would check out all the auto immune Rheumatolgical diseases ( Lupus, connective tissue disease, Ankylosing spondylitis, Vasculitis etc ) to see if your symptoms are a good fit and ask your Rheumy if they have specifically ruled them all out. Good luck with finding answers and don't give up, many people with auto immune disease have a secondary B12 deficiency.
It sound like PA may be part of your problem. But as a suffer of fibromyalgia as well I'd push for checks into that as well as there is a an awful lot of overlap. Especially in the joint pain and fatigue. Sadly it is a diagnosis of exclusion at the moment and some doctors refuse to accept it as a condition but if you do get the right doctor and get diagnosed it does mean a lot of help available for both conditions. Good luck
Thanks so much everyone. I have to say that my mood has lifted since I started my injections, and I feel like I am now in the frame of mind where I can fight this whereas before I felt so defeated.
Im going to load up on Vitamin D and B vitamins and watch my diet very carefully, and push for the additional injections as I will now be only getting one every 3 months. I will be taking some of this information you guys have provided me with to my GP. Also doing some gentle yoga stretches to get me moving in the morning.
I will find out exactly what bloods have been ran and get a copy of the results, a few people now including a paediatrician who is a friend of mine have suggested seeing a haemotologist so I will also ask about that.
Thank you so much everyone for your help and advice, it means the world to know that there are people out there who know and understand.
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