I've been managing a rollercoaster of symptoms lately and wanted to see if anyone has experienced something similar.
Onset: Since December 2022, I had recurring, short episodes of fatigue. About once every month, I would feel it coming on (almost like a cold, but with no sinus/respiratory symptoms). I'd be moderately fatigued for 24-36 hours and then recover. Symptoms included low energy, mild body aches, lethargy.
Diagnosis: Right before seeing my doctor in November 2023, I had a fatigue episode that lasted for over a week. Despite getting adequate sleep, I would keep waking up feeling like I hadn't rested. I had intermittent hot ears, head fullness, and fatigue.
Labwork: B12: 175 PG/ML (5 months ago in November)
- All other tests were normal (CBC w/ DIFF, TDH, Parathyroid, Sed Rate, CRP, Metablic, Peripheral smear, Cortisol, JO 1, RF, anti SSA, anti SSB, anti SM, anti RNP, SCL 70, centromere, C3, C4, electrophoresis-serum, protein/cr ratio, ANA)
- Anti-parietal: negative
- Intrinsic factor: negative
- Recent cofactor bloodwork after beginning injections:
- Folate: >22.3
- Iron: 132 mcg/dl
- Iron Binding: 384 mcg/dl
- Saturation: 34%
- Ferritin: 56 ng/ml
- Potassium: 3.9 (ref range: 3.5-5.1 mmol/l)
- Magnesium 1.9 (ref range: 1.6-2.6 mg/gl)
Treatment: Started sublinguals in November. They didn't help after 3 months of treatment at 5000mcg with methyl, so I sourced my own injections. I worked up to doing ED or EOD injections with cyano or hydroxy. I am 6 weeks in now with 25 shots total.
- Daily cofactors:
- Thorne Basics 2/day (containing all b vitamins)
- >550mg Magnesium
- >4500mg potassium
Response:
- I had a few weeks of normal energy after initial injections, which really got my hopes up. I'm in worse shape now than I've ever been and often have trouble managing energy outside of the house. I'm nervous to exercise or make any social commitment and feel exhausted despite giving myself 2 weeks of basically sitting on the couch doing nothing. I've been treating this deficiency for 5 months now.
Has anyone experienced anything like this with fatigue as your prominent symptom? Do my "fatigue attacks" symptoms sound familiar? Did you experience a fluctuation and overall worsening of symptoms even after 25 injections? Did it get better?
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chonkytonk
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This is through supplementation alone (Dr. Bergs electrolyte powder, plus some added magnesium and potassium powder spread throughout the day). I'm getting more through my diet which includes bananas, leafy greens, etc.
We so often hear on this forum about patients who experience getting worse before they get better.when they start injecting B12
It has even acquired a name “. Reversing out “ It takes some persistence. to carry on and keep injecting to get through this phase But I think it’s important that you do. We all know that you cannot overdose on Vitamin B12. This is a huge comfort . Do take a modest B9 ( folic acid ) tablet daily — say 400 mcg
But i think taking generous quantities of Potassium in food form is the best way to obtain it , not in other forms of supplementation. Can be hazardous otherwise . Please take heed .of Technoid warning . Also a modest Vitamin D would not go amiss , mr qunless you spend lots of time outdoors .
Does your doctor realise that about 50 % of P.A. patients test negative for the Intrinsic Factor Antibodies? These antibodies some times appear and sometimes they don’t . It’s symptoms that are the most important factor
Thanks for this message. I appreciate the support. The injections are pretty much the only thing I have to rely on in terms of hopefully treating this fatigue. I intend to keep at it!
I’m not familiar with Dr Beegs so I’m hoping it’s not a magnesium like citrate that acts as a laxative as you lose all the good vitamins and minerals you are putting in. Potassium is dangerous to supplement with unless under the dr and only supplement with b’s if you know you are low. Please try keeping a food diary and cut out food groups for a minimum of 8 weeks. For example wheat, barley, rye then if no difference after 8 weeks try a different food group like nightshades. I’m no expert just an idea. Good luck.
I’m still injecting and still in the process of healing, it does take time… much longer than other deficiencies out there, but the thing I found confusing was that my neurological symptoms were improving, but my haematological symptoms such as fatigue wasn’t improving, which made no sense, since haematological symptoms should improve first, but l’ve recently discovered that I have very low ferritin levels aswell which makes sense why my fatigue wasn’t improving, since it’s easy to assume it’s all related to B12 deficiency….
All the symptoms you’d experience from low iron levels you would also experience with low b12, in alot of doctors you need a ferritin level below 10 for it to be recognised and treated…. But there are many sources that state a ferritin level of 70 and lower can cause symptoms, you should definitely continue with your b12 treatment, but it might be worth checking ferritin levels since it would be impossible to tell the difference between symptoms of one or the other… and we can sometimes have multiple deficiencies due to absorption issues.
My latest ferritin was 56 after loading doses, but I'll ask the next specialist for another blood draw on this/options for increasing ferritin as it is on the low end of normal. Thank you!
There’s two different types of iron, heme and non-heme, non-heme is the one that cause gastro problems and you get in most places like your doctors, heme is 10 x more absorbable, there isn’t many supplements out there for heme, but you can get one called 3 arrows simple heme, is a very good product, if you google it you should find it
I have found that consistency is the key. If you are doing EOD cyano, do that. Don't switch to hydroxy or ED etc. etc. or change the dose, as at least in my experience, the body gets used to a certain level of B12 supplementation and any reduction causes B12 symptoms to return.
In my experience, cyano gives a more constant B12 to the body and I feel better on it. Hydroxy did not suit me well, as I felt up and down but seems to work fine for others. I currently do just 50mcg/day cyano injection, roughly equivalent to about 3000-4000mcg/day oral and it is working fine for me, although it did take about 2 months to fully kick-in. Good luck!
Thanks for this advice, I've been experimenting with different forms including Cyano ED, Hydroxy EOD, and the occasional methyl to see what the impacts are. I'm intending to stick with Hydroxy EOD for the foreseeable future.
Are you supplementing with folate? Your folate is quite high for injecting frequently. If you are supplementing and it’s with folic acid and not methyl folate, your body may not be able to convert it to usable folate. I believe that is one of my issues as well.
My multi has 667 mcg DFE of methyl folate. With my levels, I've been hesitant of supplementing even more (5mg daily) as some suggest with frequent injections.
About supplementing with potassium, I get bad leg cramping in the night if I don't take a serious dose of potassium daily. I'm taking about 650 mg of potassium citrate daily in divided doses with food. Eating plenty of bananas didn't touch the problem. The magnesium I take is magnesium glycinate. I take a low dose of120 mg every other day, because my kidneys can have trouble with it. My energy improved when I increased the methyl folate I take to about 1,000 mcg every 4 days, and it's also included in my daily B complex. You may tolerate a higher amount of folate. Another consideration is that I have blood sugar problems, high and low, which can give me fatigue. So I have to be sure and eat regular meals with balanced protein, veg and carbs. Good luck!
as long as you stay under 5g (500ng) per day you are good as this is actually the RDA. But definitely understand and that if you are using a powder, there is a diff between 5g by weight and 5g of actual potassium because the powder isn't just pure potassium; the label will tell you how much potassium you get per g or oz of powder.
Also to the point already made potassium citrate is the right kind. Potassium chloride will result in lesions in the intestine.
I'll post my response to your b12 level separately
Also as I'm told, if supplementing potassium, whenever you have your blood drawn, have them include potassium at least once a year or 6 months to ensure your levels are good.
Well you must supplement if you don't eat meat daily. Meat has to be eaten daily or just use oral supplement along with it. However if you were already supplementing with more than the RDA of b12 daily and you still ended up low; you may have a metabolic issue preventing the b12 absorption which means you will need injections for life.
Either way the neurological damage can be permanent if not treated with b12 so i recommend doing the daily or EOD injections until you feel better.
I would just like to reiterate what others have said, and also mentioning a couple of other things. Firstly, reversing out. Many people feel worse before better when they are at the beginning of their recovery. I would also add that the first year or so of my recovery was like a rollercoaster: full of ups and downs, highs and lows. I know you said you basically gave yourself two weeks of not doing anything, but that may not be enough. I found that when my symptoms started improving, and my energy levels increased a little, I would do more. It is human nature. The whole mindset of 'oooooh, I have a bit more energy so I will do x, y, and z', although tempting, is not conducive to recovery. This became a vicious cycle for me: symptoms easing, more energy, do more, suffer a setback, and so on. I soon learnt not to push myself. It takes time, and patience to recover. It isn't a quick fix, sadly. Listen to your body.......really listen to your body! I am now 7 years into self injecting. I am in a really good place: physically, mentally, and emotionally. The biggest piece of advice I would give anyone who is at the start of their recovery is to be kind to yourself, and your body x
Thank you for this encouragement, the vicious cycle you're describing feels familiar to me in certain ways. I'm trying to see how my energy exertion may be impacting my fatigue levels. I'm curious if you ever felt like your symptoms were more like chronic fatigue syndrome (CFS) given that you're describing post exertional malaise (PEM), which is the hallmark symptom of that disease?
I suppose I'm just concerned with the worsening of fatigue even after 25 injections.
I never considered ME/CFS as a diagnosis for myself. My daughter became unwell at the age of 17. She was diagnosed initially with ME/CFS, and then later she was diagnosed with POTS. She was very, very unwell for many years, in a wheelchair, and housebound. 13 years later she is soooo much better. Anyway, I digress. I know a lot about ME/CFS, and I never considered it as a diagnosis for myself. I knew that my body needed time to recover, and I knew this wasn't going to be a quick fix. I had many ups and downs: some were self inflicted by doing too much too soon, and others were just par for the course, such as getting a virus (which would floor me). My iron levels also went low which didn't help with the fatigue side of the symptoms. It took time, and some fine tuning, but 7 years later I class myself as well, and fairly fit. I still SI every 3 days, as that it what enables me to maintain my health. I had times where I felt that I would never feel well again. I won't pretend it has been smooth sailing, because it hasn't been. But once I really appreciated that my body was healing, and that it needed time, patience, and rest, (as well as the B12 injections lol) to heal, I began to thrive. Someone once said to me 'if you broke your leg you would make sure you rested it to aid recovery, so you need to do the same for your body'. Wise words......
Also, you say you supplement with potassium, is that due to low potassium, and prescribed by the doctor? I only ask as too much potassium can cause muscle fatigue and weakness.
The potassium is something I've seen encouraged across other B12 groups (i.e. cofactors). I add a small scoop to water throughout the day and it provides an additional 20% of the recommended daily value.
Per your other comment on ME/CFS, thank you for taking the time to write all of that out. I really appreciate the encouragement. I've found myself more physically limited than I've ever been in my life and it feels incredibly disheartening.
I have seen potassium recommended, as in increasing dietary intake, but I was always under the impression that supplementing with tablets etc was not a good idea
Yep, I've seen that same information because the tablets can accumulate in your body. This is an electrolyte powder I supplement with sparingly as opposed to a pill.
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Thinking cyano isn't for me
I'm desperately seeking advice...feel like we're going round in circles
Chronic Fatigue Syndrome / ME
