What blood tests need to be done on a regular basis for PA? About 6 years ago, my local gastroenterologist office confirmed PA. They were writing the script for twice monthly injections for PA, and also had me on a stomach acid reducer. I stopped taking the stomach acid reducer on my own when I was diagnosed with SIBO at the Cleveland Clinic. I am currently going to two different docs at the Clinic. The first is a Gastroenterologist who wants to put me on nortriptyline, to see if my severe abdominal bloating will lessen. I am also seeing a Functional Medicine doctor who is an MD. She is currently treating me with Xifaxan (whichI finished last week) and then Nystatin, which I am currently on. While taking Nystatin, she recommends also taking Biocidin (a liquid formula to help break up the biofilms of candida and rebalance the gut flora). While taking the Biocidin, she also recommends taking GI Detox to decrease the risk of die off reactions that sometimes occur. (whatever that means).
I am seeing the Cleveland Clinic Functional Medicine Physician Assistant next week for a check in, and I would like to ask her to order any blood tests that may aid in treating me. I will have to know specifically what to ask for. In the last 2 months, I have had some joint pain in shoulders, knees and hips at night. My right hip is bothering me the most. It may have nothing to do with PA, but I obviously have been mismanaged by the first practice that was treating me from way back 6 years ago. PA seems to be a very complicated problem to treat, and treat well. I would like to do everything in my power to feel well. I also think they are going to frown upon me buying my own Methylcobalamin. But I did it anyway and am going to have to level with the PA when I see her next week as to what I am doing. So far I have only been injecting myself 2x a week. I just don't know how much to do and what is too much. So I am struggling with that part-not knowing how much to inject. I do have an ongoing problem with feet burning at night, slight depression (but maybe that has nothing to do with all of this), and have always had trouble with my feet. Sometimes I can have a little trouble with walking, especially when I have been sitting for a while. My sister had MS, and I often wonder if she was misdiagnosed. When I mentioned that thought to her daughter a few years ago, she laughed at me. So I never have brought up the subject after that. She thinks she knows everything, anyway.
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Like you I am in the US. I provided my functional practitioner with the info from NICE regarding neuro involvement from PA/B12d which clearly state that injections of B12 should be every other day until symptoms stop improving.
As far as PA testing goes, once you test positive there is no further testing to be done as once injections commence your blood levels may read "normal" or "high" but the numbers only prove that you are injecting B12 into your system, not that you are cured. Again, NICE guidelines state no further testing is recommended once injections commence.
If you haven't yet seen the links provided in the following post, this may help answer some of your questions regarding safety, etc. of B12:
There are some issues that often occur with PA/B12d such as: Hashimoto's/hypothyroidism (need to test thyroid antibodies and thyroid hormone levels, most functional practitioners are well versed in proper testing and treatment). It is rather common to have more than one autoimmune issue so testing should be based on symptoms and your functional practitioner should be a good source of info. Testing for other deficiencies such as Vitamin D, folate, iron, ferritin, etc. is a good idea. My functional practitioner ran a NutriEval for me, a very useful tool for detecting deficiencies.
I am overall quite impressed with my functional practitioner and much prefer her approach to that of "traditional" allopathic MDs here in the States. Functional practitioners are always looking for a root cause, not trying to just put a bandaid on the symptom(s). However, they do expect us to do our part in eating right, following through on their recommendations, etc. I have had to adopt a strict autoimmune diet in order to dampen my many symptoms from various underlying issues. It isn't always easy but it is definitely worth it.
For what it is worth, if you have other autoimmune issues, low dose naltrexone has really helped to bring down the TPO antibodies I have with the Hashimoto's. Need to see if it is helping with other antibodies as well.
So much to learn! I value any info you are able to provide as you learn more, am sure others will as well.
Thank you. The problem with me is that I have a host of doctors. I have an endocrinologist, a gastroenterologist, an internal med doc, and the functional medicene doc. Does your functional med doc take care of your Hashimotos? Right now my endocrinologist is doing that. I always thought that my weight problem had to do with endocrine problems, but now I don't know. How does PA impact weight? How does SIBO and gastroenterology problems affect it? I am so weary of trying to figure everything out. Right now my functional medicine doc is only treating me for the SIBO.
I don't think there are any direct relationships between B12 and weight though some health clinics do push B12 as a gain to weightloss - may be some studies linking the two but there also seem to be others that go in the opposite direction. If B12 does impact on weight loss its likely to be patients who were deficient having more energy and doing more, and hence losing weight.
Thank you, gambit62. I so appreciate everyone's input. The Functional Medicine doctor thinks that once my SIBO is treated and under control, my reverse T3 numbers will be much better, (I guess that reverse T3 measures how much energy is actually getting to your cells) and my weight will come down some. From what I read, food stays in the digestive tract too long with SIBO. I have the kind where you get constipation, a sluggish digestive tract. People studying this condition think that more calories are extracted, but they are not sure. Some don't even believe that SIBO is a medical condition. The ones that are skeptical are the conventional western medicine ones. It seems that SIBO is just starting to be understood. Makes sense to me, as a large part of our immune system seems to be in the digestive tract. My own internal medicine doc that I have been going to for years, told me that the human immune system in regards to the digestive tract is just starting to be unraveled.
please note T3 is a thyroid hormone - not related directly to PA - though if you are taking replacement hormones gut problems will affect how you absorb those hormones because of the impact of lower stomach acidity on absorption.
Yes, my functional practitioner treats me for the Hashi's. She is the one who found it, as well as the PA/B12d. Unfortunately, none of the specialists I have ever seen were up to snuff on autoimmunity. They were more concerned with the fact that I refused the flu shot rather than my health complaints. Even my neurologist told me he had no idea why I had antibodies to myelin basic protein (he did do a brain MRI to rule out MS) and sent me packing without even attempting to find an answer for the elevated antibodies once MS was ruled out. I have grown rather cynical about allopathic medicine which only wanted to make sure I got my annual flu shot and tried to push antidepressants on me at each visit, blatantly missing some pretty troubling A/I issues.
According to my functional practitioner, all autoimmunity starts in the gut. Though we may have a genetic predisposition, it is only a potential and not the trigger for disease. She is a strong proponent of a healthy lifestyle as the first step. I had a private online consult with an autoimmune specialist who takes the same approach, diet first, with proper antibody monitoring. and LDN (low dose naltrexone). For obvious reasons, B12 is a key factor in regaining health.
As for weight, I can only say that if I stick to a strict AI diet, I do lose weight but that could be partially because it helps to keep the Hashi's in check. If your thyroid function is low, weight loss can be difficult if not impossible. I have SIBO as well, it is improving without medication but I am taking herbals and enzymes.
Sounds like your situation is a bit more complicated and I certainly hope that you find solid answers to your many questions.
Elliemaynot- you sound like you are on a wonderful plan that best addresses your problems. At least you had a doctor who diagnosed your Hashi's and PA. I actually went to my internal medicene doctor about 10 -12 years ago and asked him to test me for hypothyroidism. About 4 years after that, I then told him that I thought I had PA. It was around my son's wedding and I was having some pretty severe problems with my right foot. Sad, to think of all the clueless people who don't dig in and try to find out what is wrong with them. Because our way of practicing medicene in this country is really messed up. I feel that our medical schools need to be overhauled in how they teach regular internal medicene docs and family medicene docs.
Hi EllieMayNot , I'm in the USA too and new to all of this. Can you tell me where to find the info that "clearly states that injections of B12 should be every other day until symptoms stop improving" ? I'm trying to convince my GP that I need more frequent dosages. I had a total relapse in the first month after my 4 weekly "loading doses" of 1000 mg. Believe it or not, I was diagnosed at Mayo by my GI doc and there was no "special" protocol for neuro symptoms. Trying to figure out how to heal and also considering the Functional Medicine route.
It is in the UK's NICE guidelines. Unfortunately, the US doesn't have any guidelines. Not sure how you could access the NICE guidelines as I have to use a VPN in order to do so as NICE only allows access to UK residents based on one's computer IP address so I have to use my VPN to change my computer's location to the UK in order to access their website.
Here is a direct quote from the guidelines:
"The BNF advises that patients presenting with neurological symp-
toms should receive 1000 ug i.m. on alternate days until
there is no further improvement. However, the GWG recom-
mends a pragmatic approach in patients with neurological
symptoms by reviewing the need for continuation of alter-
nate day therapy after 3 weeks of treatment."
If you visit the pernicious-anaemia-society.org website, they have a lot of resources available, even more if you join. They also have resources meant to help educate medical professionals as there seems to be a great lack of understanding of PA/B12d across the board within the medical community.
If you follow the posts on this forum, you will hear from many who inject several times a week over a long period of time. Everyone is quite different in their requirements and many require more than their doctors realize which is why many resort to self injecting. I am quite fortunate in that my practitioner supports my every other day injections. I choose to order my hydroxocobalamin from Germany because it does not have toxic preservatives and is more affordable than getting methylcobalamin from a compounding pharmacy. Even with the high shipping costs, I end up spending about $1 per injection rather than $10 per injection.
I have ordered from Bodfeld a few times (their shipping is high so when I do order, I make sure it is a large enough order to compensate for the shipping rate, I recently stocked up for about a year). I have also ordered from Amazon.de through this seller:
Thank you for all of this, I'm going to order the B12 right now. Do you also buy your syringes from amazon.de? What do you reccomend for that? I'm too much of a whimp to give myself a shot....I miht work up to it some day. Luckily my husband was a medic in the military and is happy to do it for me
Needle size is totally based on where you are going to inject and, if you choose IM, how much of a fat layer you have. I order my syringes from a diabetic supply warehouse in the US, 4mdmedical.com/
I order what my GP prescribed for me which is 18ga/1/2 inch. I am in no way qualified to give advice as to what size needle you might need. If it weren't for the script from my GP, I wouldn't have known what to do. BTW, you do not need a script to order syringes from 4mdmedical, at least for the size that I use. I can use 18ga/1/2" IM and/or SubQ (I have scrawny legs which is where I choose to inject).
The first time I tried to inject I was nervous but at least I had quite a bit of experience injecting various medicines into our dogs.
I purchase syringes at my local pharmacy for 25 cents each. I told the pharmacist what I was using them for and he recommended a 1 inch needle but it is about half the diameter of an 18 gauge. I find I hardly feel it injecting my left thigh. For some odd reason my right is more sensitive. I accidentally purchased a larger diameter once and it was quite a bit more uncomfortable. Both sizes however did the job and delivered the B-12.
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