I was diagnosed with pernicious anaemia after asking to be tested. It turned out my Vitamin B12 level was 117 pmol/l. I was given cyancobalamine injections every 3 months. No loading doses. Later SI weekly with methylcobalamine I order from Germany.
Lately, I have the feeling the injections don't seem to be helping me. The last few months I'm out of breath, during a walk my pulse can reach 130 bpm. My question is, should I have been taking vitamin B9 (folate) supplements as well as B12 injections? I also have Hashimoto's thyroiditisand vitiligo
I live in Switzerland, but I struggle to find a doctor or specialist who has studied pernicious anaemia. How many times I have been told my B12 levels are too high and I have to stop the injections! I have learnt so much from Martin Hooper's books. They helped me to help myself.
I hope to hear from someone. Thanks
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Increased heart rate is a symptom of B12 deficiency. Of course it could be that you are climbing too steep mountains and over exerted yourself. Lucky you living in Switzerland!!
From what you say I think you need more frequent injections. It won't harm you.
I dont think its to do with steep mountains charks. They are only about 600-700 m above sea level. But I will try with more frequent injections, thanks for suggestion.
My iron levels were 5.0 umol/l, reference 4.1-28.7. I thought was very low. Transferrin saturation is 8%, normal value 16-45%. I was told my iron levels are ok. Decided to supplement with iron 25mg anyway, to see if this helps.
good that you finally were able to get once weekly SI but seems like may you still have symptoms of deficiency. If you’re like me perhaps you need it even more often than once a week. I didn’t start to notice improvement til I self injected every other day (to make up for the fact that I also never had loading doses and to finally raise my b12 more). Lately I haven’t been able to get back to EOD but I’ve been on 2-3 per week injections. I never could get out of a state of b12 deficiency on monthly or once weekly I was perpetually still low (evidence from blood work the hematologist insisted on doing & symptoms even though I understand the protocol in the uk is to not retest levels after supplementation). Unfortunately docs don’t understand why anyone could need more frequently than once a week and they hesitate to provide more b12 than that. But there’s clearly so much we still don’t understand about dosing and why some need more frequent injections than others
My PA was diagnosed too late. I have peripheral nerve damage and gastric atrophy. My doctor told me having more injections wont help! I will take your advice and self inject twice a week to start with. See if there's any improvement. Thanks for your advice Purplegirl2.
I have the same; peripheral nerve damage and atrophic gastritis also and suffer from arrhythmias. I'm on a waitlist here in the US to get arrhythmias checked but can't be seen until December. I have however been taking a supplement called Hawthorne and it seems to be helping. Once I stopped taking it my arrhythmias came back full force. I had intense dizziness, lightheadedness and felt like I just wasn't getting oxygen to were it needed to go. I'm back to taking the Hawthrone daily as I have no other course of action with there being no doctor to go see and all. What is actually happening or going wrong when I have the arrhythmias is beyond me.
The only time my pulse has been consistently too high was related to my thyroid. I have Graves’ disease (overactive thyroid).
It may be worth having your thyroid levels tested in case you’re over-medicating. Also, I’ve no idea but I wonder if you could now have Graves as well as Hashimotos? From memory I have antibodies pointing to both illnesses and the Dr said that although I started with Graves it’s likely I’ll end up with an underactive thyroid.
Hello JanD236, I had my thyroid levels tested in April, only FT4 seems to be lower at 16.13 pmol/l. Specialist told me this needs to be near the high end 23pmol/l. Received results through post but will ask at my next appointment.
I have Hashimotos and like many frequent this Forum to learn more as well as being on Thyroid UK. I inject B12 weekly due to being without a terminal ileum ....
Your FT4 level seems reasonable but as it's a storage hormone you also need the FT3 result - which is the active hormone - needed in every cell of your body. Testing T4 and T3 together will indicate hos well you are converting.
It is often suggested taking a good B Complex keeps B vitamins in balance when supplementing B12. B12 works with B9 in an important way in creating new blood cells.
So low T3 as well as low folate can be involved with increased pulse. Also low iron .... 🌻
I’m not at all clued up like the experts on this forum but should u not be taking adeno to convert the methyl injections? Maybe someone on here knows more. I also order from Germany. But I am injecting Pascoe Hydroxo.
Are u taking folic acid with the injections? I also have PA and live in the Netherlands.
All forms of B12 are broken down to cobalamin, then converted to the active forms (methyl, adenosyl). The methyl and adenosyl components of methylcobalamin and adenosylcobalamin (if those forms are taken) are not used in this rebuild. So taking adenosyl b12 won't make any difference to the conversion of other B12 forms.
I’m not sure. The Hydroxo works for me. I just wondered if u also needed to take adeno alongside your methyl injections. But the more experienced members on here know more. I also take folic acid but am still figuring out the right dose for me.
If you take adenosylcobalamin along with the methylcobalamin, the adenosyl part of adenosylcobalamin ( the "ligand") would not be used in the conversion of that methylcobalamin to adenosylcobalamin.
"Numerous studies and reviews of B12 metabolism have shown that CNCbl, MeCbl, OHCbl, and AdCbl are reduced to the core cobalamin molecule inside the cytosol. It is important to note that the ligands specific to the ingested B12 form—methyl and adenosyl—are removed during that process and not used inside cells during the conversion of cobalamin to the 2 active forms of B12"
Rapid pulse could be completely unrelated to your pernicious anaemia. You could have iron deficiency anaemia as Nackspan said or any number of other issues. I would suggest a visit to your GP to be on the safe side
I also suffer from arrhythmias. no answers as to why, but am noticing they are way worse when I have any sort of sugar substitute; even stevia seems to kick them off.
I also have a rapid pulse with walking. My resting pulse is in the 50s or 60s, sitting my pulse is in the 70s or 80s and standing it is in the 90s or 100. If I walk around or cook or do any activities upright, my pulse goes into the 130s 140s. I believe I developed autonomic dysfunction after damage from my B12 deficiency, and it got a lot worse after I had Covid last fall. Although, in retrospect, I had some mild symptoms before all of this. The name for my condition is POTS, postural orthostatic tachycardia syndrome. It’s also related to ME/CFS. This kind of autonomic dysfunction can also lead to auto immune diseases such as Hashimoto’s and vitiligo. Perhaps you have some of this going on. Here is a link to a description of POTS from dysautonaumia International. They have lots of good resources on their webpage and on their YouTube channel. dysautonomiainternational.o.... I must warn you that this is a group of diseases that is even more poorly understood than B12 deficiency, so you, you will be lucky to find a Doctor Who knows anything. Although for people who work in the field, there seems to be a recognition of this and they have shared a lot of information online. The YouTube algorithm has brought me lots of fantastic information. I’m happy to provide more links if you’re interested.
if you do think you have it too, I would recommend listening to this cardiologist from London. He’s got a website and lots of good interviews on YouTube, but I thought this was the best from the patient perspective.
I have watched all of this . Thankyou for sharing . I’ve had Covid, have PA and also had cardiac surgery ( Ross Konno procedure ) for congenital heart disease. So been in the wars a bit! Understatement of the century ha ha . My autonomic nervous system is defo up the creek ! I’d been looking into it and this Dr Boon Lim has said everything . Will be looking him up. Ive been trying to slowly implement things and just love his take on it all inc the gratitude , breathing . All of it . Great stuff
yes, he’s so comprehensive. I was reluctant to believe that breath work could make much of a difference, but it really calms my system down and increases my HRV dramatically.
I had the SAME problem and used to be fairly athletic. Just keep doing the frequent injections. Your body takes a long time to recover. It took about 1.5 years of daily injections to get past this.
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