Hi friends, today I’m going to stray from the decor side of my blog and share my DIY journey to health. I’m in a blogging group on Facebook with a bunch of Over Fifty bloggers like myself. It’s a great group of women and we discuss anything and everything related, or unrelated, to blogging.
Recently someone suggested we do a blog hop about our experiences or perspective of being over 50. No topic was off limits and I thought a long time about what to write. And how do I tie this into my Home Decor/DIY theme? My blog is about all things home, and I’m in the home, so today I’m sharing a story just about me. Make sure you check out their 50+ articles at the bottom of this post.
I really don’t mind being in the 50+ category, I have a lot of life experiences that my younger self didn’t have. I might not like the lines that are starting to appear on my face, or the “sun spots” but I’m pretty blessed and content. Last year we had a big 50th celebration so I’ve peppered some pics from that fun party into this post to keep it from feeling too heavy. (I’m sure you’ll excuse some of the lower quality pictures.)
The long journey begins.
Starting several years ago I was making many trips to the doctor for office visits and lab work looking for answers to my aches and pains. It started sometime in 2005 and seemed to build slowly from there.
Over the years the pain and stiffness and other symptoms continued to grow. I was finally sent to Rheumatology where I was given this prescription or that other prescription to try. All the while I felt my doctors didn’t really take me seriously. Unfortunately, that’s a common theme for female patients sometimes.
I suspected Fibromyalgia, I mean I fit most of the criteria for it. But I also fit a lot of the criteria for a lot of other illnesses such as Lupus, Thyroid disease, Lyme, and even MS. Eventually I would tire of the lack of investigation by my doctors, or their disinterest in my long and growing list of symptoms and stop going for several months. Then I’d read something promising from a legitimate source (isn’t everything online legitimate 😉 ) and back I’d go for another round of visits and labs.
More prescriptions and more being told “we all hurt as we get older.” I call b.s. on that statement. Not that we don’t get stiff or achy as we get older, but to this degree, and in my 40’s? No way, not gonna believe it no matter how many times you try to shove it down my throat. And yes, eventually they even offered me anti-depressants. Shocking, I know!!! I wasn’t depressed, my joints hurt and I was exhausted all the time. Were they giving it to me for the “off label” benefits or did they think it was all in my head?
One of my doctors told me that the anti-depressants can raise your serotonin levels. But they’d never checked my serotonin levels, can they even test for serotonin? I guess they do have tests for that but they never did so how did they know mine were low? And if raising serotonin levels would be good for me then why not put the same emphasis and focus on all my lab work that was nearly in the toilet?
“Yes Doctor, I know losing weight will help my joints. But do you seriously think losing the extra 20 pounds is going to miraculously cure my memory issues or foggy thinking?”
Finally, an answer. Or was it?
After yet another visit to my rheumatologist in 2014 he finally replied to my email to tell me I had Fibromyalgia. Really? You’re going going to give me a diagnosis over email?! It hit me hard that day, and I cried a lot. I felt defeated and I had a good pity party, and probably a few glasses of wine. But in my heart I didn’t really believe it.
There is no diagnostic test for fibromyalgia, after all. I call it the bucket diagnosis. “We don’t really know what’s wrong with you so here you go, maybe this diagnosis will appease you while we help other patients who are really ill.” I’m not trying to be cynical, but that’s how it can make you feel.
Ok, now that you know the background I’m finally getting to the really good stuff. I’ll call it the DIY treatment of hope for wellness.
Some light at the end of the tunnel.
Fast forward to last summer when a friend called to share her experience after receiving B-12 injections from her Doctor. She said that after her 3rd shot all her joint pain went away! I was so happy for her and quickly pulled up my labs online and found that they had tested my B12 levels a year earlier. My B12 level was on the very low end (230 when the range is 200-900 [in the US] ). That call gave me hope that I too could feel better one day.
I spent the next month doing hours of research before I visited my new primary care doctor. Mistakenly I started taking high-dose sublingual B12 about a week before I had my blood tests done. By the time she tested my B12 levels again my numbers had risen to 307. But the sublinguals were really giving a falsely elevated picture. I won’t get into it in detail here but there is a better, more reliable, cellular level B12 test called HoloTC that I should have requested.
I went to see her after all my lab results were in so she could do a neurological screening (because one of my symptoms was neuropathy). I came armed with supporting articles and my full symptom list. Sadly she would not even consider therapeutic injections, no matter how much evidence I quoted. I must say that I love my doctor, she is young and smart and caring! But sadly medical doctors do not receive much, if any, nutritional education while in medical school. This is not the case only for U.S. doctors but all over the world.
B12 is crucial to every single cell in our bodies and you can only get it from animal sources. Beef, chicken, fish, eggs, cheese, etc. This puts vegetarians and vegans at a high risk of becoming B12 Deficient. I’m not a vegetarian so there is no obvious reason why my numbers would be so low. The process of absorbing B12 happens in the stomach. If your body doesn’t produce enough of the necessary substance, called Intrinsic Factor, to allow B12 to be absorbed the critical vitamin will leave your body as waste and you will eventually become deficient. Unfortunately that is one test I didn’t know to request.
While I hate the statement “as we age” I find myself saying it more and more, as I age 🙁 But it is true that as we age Intrinsic Factor production decreases. Which is why the elderly are at risk for becoming B12 deficient. And many dementia patients are actually misdiagnosed cases of B12 Deficiency. More on that a little later.
Having studied my blood work over the years and read a ton about lab work, you can’t convince me that being too low or too high in a given range is perfectly ok. Especially if you’re having symptoms related to a particular test. I mean, who are the ranges designed for, and who makes them? We are all unique, what works for you may not work for me, and vice versa.
While doing my research I read about and joined an international support group on Facebook which is administered by some really great individuals. Most of the Admins are fighting their own deficiencies or have a close family member who suffers with it. They have been forum moderators on large websites and while they are not medical professionals they have gleaned valuable knowledge over the years from their own and others’ health journeys.
After reading through the files and posts and asking many of my own questions I decided I would go out on my own and administer my own treatment.* It’s a route that many take, and are successful with.
*I am not giving medical advice. I am simply sharing my story and my experience. If you feel you or someone you love suffers from B12 deficiency please speak with your doctor first.
Taking matters into my own hands.
Once I received my supplies I asked a paramedic friend to guide me through my first injection. It’s necessary to have a medically-trained person with you the first time because on rare occasions a person can experience Anaphylactic shock. After that I was ready to do them on my own.
I didn’t have the same fast reversal of symptoms that my friend experienced. It’s been a slower journey for me, the longer you are ill the longer it can take to recover. But everyone is different and I have been successful and seen a lot of improvement.
I’ve been injecting daily for a year and I take a lot of supplements along with eating good food to support the injections. Some might say that’s too often but it’s perfectly safe. You can’t overdose on B12 because what your body doesn’t use you pee out.
Reviewing my symptom list just now I’m happy to report that I’ve had positive results in all but 2 of the 32 symptoms I was experiencing. Yes, 32 different symptoms!! Some improvement has been better than others but when I look at where I started I can only smile. Thirty (30!) different things that have plagued me over the years are IMPROVED or IMPROVING (insert happy dance emoji here).
I’m not just imagining that things are better. I am actually getting better!! How do I know it’s working? Well, when I get lazy and don’t do my injection for a few days, or slip into an every other day routine, I feel it in a big/bad way.
I’m not just imagining that things are better. I am actually getting better!!
At some point I’ll try reducing my treatment and see how it goes. If it doesn’t go well then I’ll keep doing what I’m doing because it allows me to function like a regular person. I still have some pains and some stiffness that I don’t put into the “as we age” category. Overall I’m light years from where I was a year ago. There’s nothing my doctor could say or do that will make me stop.
I haven’t told my doctor yet, but I plan to very soon because I need to get my labs checked. Like I said I’m taking lots of supplements so it’s wise to keep an eye on your levels so they don’t get too high or too low. I’m shooting for somewhere in the middle.
Oh, I’m sure my doctor will be concerned when I tell her. But I’m hopeful when she hears my experience that she’ll do her own research and self education so she can help other patients like me.
Ok, earlier I said I’d expand on my comment about dementia. But it’s more than just dementia. Many illnesses are actually misdiagnosed cases of B12 Deficiency. An example of some other illnesses are; Autism, Learning Problems, Infertility, Autoimmune Diseases, Heart Disease, Vascular Problems, MS and other neurological diseases.
This post contains some affiliate links for your convenience. You can read my full disclosure here.
Do you or someone you love experiences any of the above illness or symptoms like mine? If so I highly recommend that you purchase and read the book “Could it Be B12?: An epidemic of misdiagnoses“ written by
Another book by Sally Pacholok, that many parents in the support group recommend, is “What’s Wrong with My Child?: From Neurological and Developmental Disabilities to Autism…How to Protect Your Child from B12 Deficiency.” It’s OK not to take a diagnosis your child’s doctor has handed you.
Oh, and one more very important thing to know is that many prescription medications, as well as antacids, can cause you to become B12 Deficient because they block absorption. Metformin for Diabetes is a big culprit.
“Vitamin B12 Deficiency is an epidemic causing more health damage than the polio epidemic and it can now be prevented through simple screening and Treatment” –Sally M Pacholok, R.N., B.S.N
So that’s my story, my DIY Journey to Health. I hope you found my story helpful and encouraging to know that you can have success when you take your health into your own hands.
I’d be happy to know your thoughts so please leave them in the comments below. Again, I’m not giving medical advice but I’m happy to share any information I have if it can help others.
Be sure to check out my other blogging buddies perspectives on being 50+ below.
Pin this to your favorite Board:
Until next time,
Mary-the boondocks blog
Friday 23rd of September 2016
Toni thank y ou for sharing your story with us. I really admire your persistence and taking matters into your own hands. I seem to find that doctors are all too quick to throw some pills at us and be done with it. Good luck to you in the future and I am happy t hat the treatment is working.
Tuesday 27th of September 2016
Thank so much Mary for reading my story. Yes, I agree about throwing pills at us. Too too many people just blindly accept prescription meds as the solution, when in reality it can probably be fixed naturally.
Monday 19th of September 2016
Bless your heart. Thanks so much for your your highs and lows. It is always encouraging to hear others blessings and successes. I am praying for your health to continue to progress. You are so sweet. xoxo
Tuesday 27th of September 2016
Thanks Meegan, you are a sweetheart and thank you for the prayers, that made my day!
It's amazing how many people I've heard from since writing this post who have the same issues. I hope more and more people can benefit from me sharing my experience.
Saturday 17th of September 2016
Toni, I'm glad you are doing better now. Like you, I'm a firm believer that we are our own best advocate when it comes to our health.
Monday 19th of September 2016
Thank you Mrs. A, yes feeling much better but still I have bad days. I guess that will never fully resolve but keeping at it is the best plan for feeling my best. Like I said in the post, I get lazy now and then and recently had some symptoms pop back up so I'm back to faithfully taking my supplements and injections daily.
Jas @All that's Jas
Friday 16th of September 2016
Sometimes taking matter in your own hands is the best solution. Glad it worked out for you. I had no clue it is linked to so many illnesses and has so many benefits. Worth a try, maybe just in a pill form for starters. Thanks for sharing!
Friday 16th of September 2016
Hi Jas, thanks for stopping by. Yes, it's amazing how many things being deficient can affect. But I'd get tested before you starting taking any over the counter supplements of B12 and any strength because it can really give a falsely elevated picture of your true number. I made that same mistake, as have a lot of others.
Thursday 15th of September 2016
Toni....you hit the nail on the head!!! I too have suffered from B12 deficiency and I diagnosed myself as well. I was severely anemic due to low iron and my doc wanted me to do all sorts of upper and lower GI tests. I stumbled across an article about anemia being tied to B12 deficiency and insisted he give be the correct B12 blood test. After tge results, he immediately started me on shots for one year plus iron supplements and after a year I was stable enough for sublingual B12. I have been in the normal range for 2 years. Kudos to you for being proactive and listening to your body.
Friday 16th of September 2016
That's wonderful Denise, I'm so glad you're feeling better! So few Doctors are really aware of the importance and I'm so thankful that you found the article that lead you to the right treatment. I would caution you though that since you were B12 deficient the sublinguals may not be enough for the long term and you might have a dip. Based on everything I've read in the support group and online once you start taking injections or sublinguals your B12 Serum levels are artificially high. You have to go without supplements of any kind for 4 months to get a true reading of the Serum count. The more accurate (costly) test is the HotoTC test that checks the B12 that is available to your cells. I don't recall the ratio but it's something like only 20% of Serum B12 will actually be absorbed into our cells. You might want to talk to your doctor about getting a quarterly or semi-annual injection, just to be on the safe side.