Does anyone have any idea as to whether the two above may be linked?
From what I understand, C-reactive protein levels become raised when your body is fighting some kind of infection, or something isn't normal. My levels were raised quite high (in the 40s - normal is below 10, but below 20 is seen as not a cause for concern) when I was first diagnosed with having a b12 deficiency. They went down over the course of about a year after starting my injections, and then after I went to 8-weekly injections they hung around the 19-20 mark. I was having c-reactive protein bloods every 6 months for monitoring.
About 6 months ago I managed to convince my Dr to let me have 4 weekly injections. and i have had these every 4 weeks since then. I just had my c-reactive protein levels checked and they have gone down for the first time to 13.
I am unsure whether this is just a coincidence, but it seems like they could be linked, so would obviously like to point this out, should doctors try to reduce me back to 8weekly (my dr who was open to the research I pointed out has just left the practice and I daren't discuss with another doctor in case they aren't as receptive, not to mention I'd probably have to take all the research back in and explain it again.) However there is likely to come a time when I will need an appointment, so I want to know whether this is something I can use to convince them to keep my monthly injections.
Thanks for reading if you have got this far, and I look forward to hearing whether any of you have experienced something similar.
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Bowtruckle
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I'm new to this and I have no idea but all I can say i that my C-Reactive protin has never ever been high whereas this time on my blood test when my B12 defficiency was discovered I also have slightly raised C-Reactive protein.
I did think this might be the case. I haven't tested positive for intrinsic factor, so not sure if its definitely PA or if there is another reason I can't absorb b12. But this is useful to know...
Hi Bowtruckle. The C Reactive Protein blood test measures the amount of inflammation in your body. Many things can raise your C- Reactive Protein, such as; infection, a trauma to a part of your body, like a sprained ankle. Generally doctors like to see your C-Reactive Protein levels be below 8. Yes, autoimmune diseases do tend to raise the amount of inflammation in your body because your body's antibodies are attacking itself. Pernicious Anemia is an autoimmune disease process. You do not tell us what symptoms you are experiencing that would cause you to want B12 injections? Do you know what caused your B12 level to be low? If you could give us alittle more information it would be easier for us to help you. It could be you have a different autoimmune process causing your inflammation.
I started out a few years back by going to the doctors, because I kept falling asleep at 4pm for about 3 hours or more and was constantly tired, achey and had no motivation etc. After they found my b12 levels to be 178 (range was 220minimum) they tested intrinsic factor (negative) and gave me the loading doses (I also had vit d deficiency and had a high dose tablet twice a week for 6 weeks and my c-reactive protein was at 48, I also had anaemia which corrected after injections). I then had injections every 3 months (my CRP levels reduced to the 20s and bounced around there for a while). After about a year they didn't seem to be helping very much anymore and I wasn't feeling any effect from them. I did a bit of research and that is when i found all the information about other symptoms that I had had for a long time, that I hadn't realised were symptoms - unsteadiness, tinnitus, anxiety, pins and needles in the night, amongst a few other things. I spoke with my doctor and requested because of the tinnitus and pins and needles etc, that I should be on 8-weekly injections, which she put me on. I was on those for about a year (and during that time my CRP levels stayed at about 18-20), and at the beginning of this year, i started doing more exercise and going to the gym. I noticed that my performance was very much based on whether i had recently had an injection. I requested to go to 4-weekly injections. Which she agreed I could after I presented research showing it wasn't dangerous and was perfectly safe. However as she had never prescribed more frequently than 8-weekly she asked me to see a gastroenterologist, which I had an endoscopy last week and I am awaiting results. The gastroenterologist was sceptical that I would need more frequent injections as my b12 levels (which they insist on keep checking) are at 1300-1500.
I have been on monthly injections now for just over 6 months, and just received the results of my last CRP which was down at 13 - the lowest I have ever seen it. I also think the Dr I have been seeing the last few years has left the practice so I want to be one step ahead if the gastro or one of the other GPs tries to reduce the frequency of my injections. I have been feeling a lot better with the monthly injections, and although not 100% and I could probably do with them more frequently for a time, I am happy with the monthly injections for the moment.
I did have an MMA and HCY test just before I moved to 8weekly injections but not entirely sure these were accurate as i didn't stop injections before. I had the blood test on the Thursday then my 12 weekly injection on the Friday, but they lost one of the tests, so I had to go back and have one again on the Monday after the injection. both came back within normal range.
If there is anything you think I may have missed then let me know. I have access to all my medical records and results online.
I think I would tell them what you have just told us regarding your CRP levels- which of course they can check and monitor. It seems fairly clear-cut that the B12 helps more when more frequent in your case, whatever else might be going on.
I know that GPs and consultants do not like being swamped with so much research that they can't possibly scan through to relevant passages and make sense of the thing during the appointment- you are then giving them homework !
The good ones quite like it if you keep GP-friendly records: what happens, how frequently and how bad it is -and a couple of dated photos of visible symptoms helps, especially if your symptoms are up and down and maybe not apparent on the day. These all need to relate clearly to when your injections occur, so that a pattern (if there is one) can emerge.
There is also the fact that in the beginning, B12 injections were administered monthly, then changed to 2-month intervals, then to 3-month intervals - although no-one can say why the changes were made. This has recently been changed in the guidelines to read every 2-3 months.
With the Pernicious Anaemia Society's welcome involvement this time, it appears to be almost an acknowledgement that they had perhaps taken cuts a step too far without clear cause. At least, that's the way I've interpreted this latest U-turn.
Why else ? A water-borne vitamin with no known adverse effects is what we're talking about here. And an NHS history of being safe to administer at monthly intervals.
Thanks for that. Yeah it should be a doddle. Unfortunately not all GPs seem to think like that. At least, the gastro was trying to convince me that my symptoms could be as a result of too much b12, but we'll see what comes out of that. Yes in my case it does seem to be the case, I just wondered whether it was quite common amongst sufferers.
As with all research I have taken in, I have made sure to highlight the relevant/most important bits, so 1. I can find the bits I'm referring to, and 2. its easy for them to see at a glance.
My doctor acknowledged that I knew more about it than she did, and said she would happily refer me to a b12 specialist if I could find one, as she didn't know of any. By backing up what I was saying with medical journals, the bnf and bhj, she couldn't really argue differently.
I guess this is just another quantifiable element to add to the list of 'highly coincidental and therefore possibly linked to my symptoms' list.
Have you ever thought of seeing a rheumatologist? With the continued high amounts of inflammation in your body, perhaps, you have something else going on. Also have you ever thought of self injecting? I have been having weekly injections for 6 weeks now and I am starting to see improvement. I still have the peripheral neuropathy with muscle spasms per electromyography that was done recently. I have seen marked improvement with my tinnitus. So far, I am happy with the improvements I have seen, I also am much less fatigued and my mind is much clearer. Most importantly, my walking has vastly improved, I was using a walker, but I am able to go quite a ways without one now, quite confidently. I am scheduled to have an upper endoscopy this month as Gastroenterologist is quite certain that I have PA. My MMA was elevated significantly, also there is a strong family history of stomach cancer, so I am quite anxious to have that done. My doctor also admits to not knowing much about PA and considers me, " quite well informed", thanks to the Pernicious Anemia Society. You do say you are feeling much better so maybe self injecting would be the way to go. I am hoping you keep feeling well and that you are happy with your quality of life. I am from the USA and I am a retired registered nurse, but these are only my opinions and of course I urge you to follow your doctors instructions. Of course you have found there is never anything wrong with doing self research, but I have found that a doctor/specialist is best in pulling all that information together to get to the real problem. I wish you all the best.
Yes I can remember. My MMA level was .88. I am being realistic about my recovery from B12 deficiency. I know that I will have good periods and bad periods for quite awhile, but to feel as good as I do now; well let's just say that I was sure I would never feel that way again, because it has been years. So I truely feel the Lord has blessed me far more than I ever thought possible. Blessings and good health to you Cherylclaire.
I did see a rheumatologist about 2 years ago, as my joints click, (mostly my hips, knees, elbows) however my thumb and right hand fingers click quite a bit. I was told as it has started in my larger joints that it’s unlikely to be rheumatoid arthritis. However I have mild hyper mobility, and this is what causes the clicking.
I have thought about self injecting, but settled for the time being of using sublinguals (I just forget to take them regularly).
I’m in the UK and with the shitstorm going down with brexit atm, I didn’t want to start self injecting and then have trouble getting hold of the stuff from Europe.
Thankfully my symptoms aren’t so bad that they stop me from doing most things I need to do in day to day life, it’s just the permenant tiredness. My partner is one of these go go go people and it’s hard to keep up at times.
Hopefully your gastro goes well! X
Thank you, Bowtruckle. I understand the chaos in your country as our country is going through something too. We, in the United States, basically have a crook as our country's leader, who thinks he is above the law. I do not think the political stress does our health any good at all. I hope you can get a schedule down for your sublingual so you have more energy and that you have a wonderful holiday season.
Hi CRP measures inflammation. As most chronic disease is known to stem from inflammation a good measure is to put things in place that you can control - diet, gentle exercise, supplements and learn so that you become knowledgeable and can be responsible for your own health. And monitor your CRP levels watching them rise and fall to see what is working for you. There is an advanced test called HSCRP - which is High Sensitive and can indicate more to the doctor re where the inflammation is coming from - so I have heard (I have never had) I believe mainly heart patients have. But as B12 deficiency affects the heart and many pathways in the body - Knock on effect on all systems then you could argue your point that it is necessary that you know what is happening with the health of your heart. Functional doctors - the ones that find the root causes of health issues like to see CRP at below 1. My rheumatologist flipped one year when my CRP was 18. So work towards getting it down as low as possible and that is with nutrition, supplements and lifestyle not anti inflammatory drugs.
So cutting sugar and foods like refined flours/ flour products, cereals etc that digest immediately to sugar and spike blood sugar creating a need for more insulin. Insulin in itself is inflammatory.
Bottled vegetable oils that is all the polyunsaturated oils and margarines are unstable and create an inflammatory cascade inside the body. So stop eating /cooking with and return to natural saturated fats like butter from grass fed herds, animal fat, eggs, coconut oil, avocados.
Don't overdo exercise, but walking briskly when you can and certainly move for more than you sit.
Get a good nights sleep every night and pay attention to circadium rhythms/routines
Your brain cleanses itself during sleep, in a darkened room so I find best to sleep with an eye mask, otherwise melatonin can't be produced which basically is your body's best own anti inflammatory
Consider your microbiome balance and your mitochondria. If you are not knowlegeable about - google Chris kresser microbiome. Dave Asprey mitochondria. look up the website redlight man .co .uk and read the info and blog on there. Read neurologist Dr David Perlmutter books Grain Brain etc. Read cardiologist book Wheat Belly - Inflammation integral to their message.
Homocysteine - normal range is not good enough. Do you know what the level was? You can have a high serum B12 and none getting into cells. Homocysteine is converted back into methionine in the body by methylation function - B12. If your B12 pathway is functioning then homocysteine will be low 6 - 7. should be low. If not it is advised that B12 and other supplements will bring it down. (google, food for the brain website homocysteine so that you are directed to the correct pages and look at their recomendations. Homocysteine is inflammatory - leads to poor heart and brain health.
Read Dr Datis Kharrazian's work - book , why is my brain not working. He is now doing a lot of work re foods that in certain people trigger brain inflammation in certain areas of the brain in different people with different genes. Just google and watch as many you tube video interviews of his that you can
Also ensure that your vit D levels are up at healthy levels of minimum 125mmol/L with health issues better at 150mmol/L. See information on Grassroots Vid Research Council website.
As you will find, there is lots you can do without a doctor (use for requesting blood tests) but you yourself monitor how you are doing by keeping printouts of all tests
Go to the Public Health Collaboration' website. watch the video presentation talks of the British GP's and other health professionals, scientists - especially focus on diet and guidelines and inflammatory diets. They are a collaboration of health professionals who want current govt guidelines overturning. Just held their 2019 conference in London. Watch the videos. Listen also to Irishman Ivor Cummins re diet. British GP and Heart specialist Dr Malcolm Kendricks book of 2007 The Great Cholesterol Con and his later 2017 book Doctoring Data
I saw your comment re lack of energy /tiredness - note everything to do with your mitochondria
There is the mitochondrial summit on at the moment , online interviews, just register your email and daily interviews will be emailed to you. However probably just about finishing. But such summit interviews are usuall replayed possibly this weekend or next - just register and such info will be sent - a lot to learn xx
Wow, just read through this at 9am. I think I’ll have to re-read this in a few hours! 😂
It does make a lot of sense.
I have a fitbit which helps to monitor my sleep and hr etc, I also tend to cook mostly from scratch, and like you say, use things like coconut oil for cooking/baking. I guess there is definitely more I can do, and I am definitely a bit of a sugar addict. 🙈I’ll dig out my homocysteine results in a bit and put them below thanks for all the info!
Mitochondrial summit link. The expert interview talks will be aired for another 4hrs - so 2.30pm ish. If miss them there may be more this afternoon which should air for 24hrs not sure when the summit ends but as I said previously there is usually a replay of all the weeks talks so it is worth registering even if you only get to listen to one
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