I want to put out a working hypothesis for input, critique and comment. I was diagnosed with B12D/PA just before Christmas 2021. I am certain that I have had B12D for a very long time. I am now 73, I SI EOD and have done for 8 months and yet latterly I have felt increasingly exhausted. I've also started deep relaxation and meditation to slow down an over- energised nervous system compensating for almost non-existent healthy energy. My hypothesis now is that, after years of trying to live life and as my B12 levels declined, I was living off adrenal energy increasingly. I regard that as borrowed energy and now I have a substantial energy debt, hence my increasing exhaustion. As my nervous energy decreases through relaxation and mefitation and adrenal-driven energy decreases through a slowing down of my nervous system I'm now feeling the full effects of long-term B12D and it's effect on my body.
If this is only partly true I'm left with questions: can my long-term overworked adrenals recover and establish a balance with energy that comes from healthier blood and nervous system?
Or is this hypothesis totally wide of the mark and my reasoning skewed?
All comments gratefully received.
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Orchard33
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Hi Orchard33, alternative thought: if you have one autoimmune disease, you're more like to have another. Pernicious anemia and Addison's disease can frequently be seen together (also with Hypothyroidism). Each time I treated one of my issues, it uncovered another one. I now have B12 deficiency, adrenal insufficiency, and hypothyroidism. Anyway that's just anecdotal.
Some common things to check include:
For cortisol/adrenals you can do a saliva test. Best to join and ask on the thyroidUK group which test is best, because for the life of me I can't remember, and there is one lab that should be avoided. healthunlocked.com/thyroiduk Yes it is possible to recover "tired adrenals" but it depends on if it's high or low. And if you're not actually Addison's or Cushing's, but levels are somewhat off, then yes, I believe it's possible to recover. But there's usually another underlying reason, including any of the below:
Thyroid status, test TSH, FT4, FT3
High/low iron is something else to check with a full iron panel: serum iron, % saturation, TIBC, and ferritin.
Vit D level.
How is folate? Have you tested levels - make sure it is not too low. And some people need to take high doses even if labs are fine (sometimes testing RBC folate can help in those cases).
Other things to consider: Heat damage to B12, especially if ordered during the summer? A change of B12 brand to one that doesn't work as well? Low stomach acid causing malabsorption of important vitamins/minerals?
I'm sure there are other things to consider, these are just the most common ones that are top of mind at the moment. Others will comment too I hope.
One other thing to consider, after ruling out all the above. I don't like saying it because it's depressing, but it's true - you may need to be patient. In cases of long term deficiency, it can take a long time to recover. My neuropathy, balance, and vision issues recovered quite nicely within a few years, but the brain fog and energy levels took a lot longer - 4+ years, and I'm still not 100% after 7 years.... BUT if you're still getting worse, then please do keep investigating!
I am not medically trained, just a fellow sufferer.
And I'm sorry you're feeling so poorly. Sending virtual hugs 🤗🤗🤗
Many thanks for your response. There is so much in what you say so I will consider all the points you outline and decide on next steps.Vitamin supplementation is in hand but I will re test in due course. Addison's is something I will have to return to the doc to explore. A daunting prospect, both Addison's and the doc.!
I'm reassured by your comments on the time it can take. It is a long haul and, I think, will never be over, just better. I'm gradually reconciling myself to that. The psychological journey is as taxing as the physical journey.
This feels like one of those threshold moments when this forum is a life-line.
Oh yes, the psychological and physical are so intertwined. We should just coin a new term psychophysical that would include the brain fog, inability to focus, brain atrophy (physical shrinkage of the brain) caused by untreated severe B12def. If those weren't bad enough then throw in the mental exhaustion of having to hmmm, I was going to say "self-advocate" but I think "battle" with the health care industry (no matter the country) is more descriptive. We need to add this to our causes of fatigue list!!! 🙃
Most people seem to use Regenerus or Genova Diagnostics. I've just used Regenerus, it was easy to do. Just make sure you read the notes beforehand carefully and send back earlier in the week - and don't do the test in hot weather as the saliva needs to be frozen!
I was livid. My husband...not sure I told him😁I even sent an email explaining that their test is viewed as useless on TUKHU with its 130 000 plus members...they replied they had no plans to change it.
Bso 12 plays a role in the processes in your cells that release energy. It also plays a part in the process that resets neuro-transmitters.
Not really sure what you mean by 'health energy' but it is possible that your symptoms are just symptoms of B12 deficiency - which is quite likely at 73 because stomach acidity tends to drop anyway with age.
hello, I ve been wondering myself if my adrenal glands were affected as I am exhausted but find it hard to rest.
jade_s reply is very helpful. A reminder that I must make myself contact the surgery for blood tests. As you say the prospect is daunting hence my procrastination!
The saliva test is one easy way to start, without having to go through a doctor.
Often if you have Addison's you will have a host of other symptoms beyond exhaustion, see here nhs.uk/conditions/addisons-... i had everything but the weight loss and fever.
If you go via the doctor, the blood test should early morning and fasting, no later than 9am. Serum cortisol, sodium, and potassium to start with.
OMG Orchard33, you're giving us a homework assignment!!! 😆
That's an interesting hypothesis worth investigating. Like a kid in the class with the mean homework assigning teacher I'll accept the assignment just to get a good grade. Or perhaps you would accept a shiny red apple instead? 🍎😊
Agree with jade_,s also. I struggle with low energy and fatigue. It's due to various things I know and likely a combination of each...
These are things that those with autoimmune PA/AMAG may experience that affect energy/fatigue.
1. Chronic inflammation
2. Iron Deficiency with or without anemia, due to low/no stomach acid.
3. Hypothyroidism (Hashimoto's) ~40% of those with PA will have this.
4. Leaky Gut your immune system constantly ramped up fighting microscopic food particles entering you bloodstream directly.
5. SIBO due to low/no stomach acid
6. Malabsorption if nutrients, not just B12 and iron.
7. What you said Orchard33 Adrenals worth investigating.
I did not include B12 def as I assume we are all diagnosed with PA and supplementing sufficiently. Although there is a functional B12 condition.
When you look at symptoms for each of these individually... One of the main ones is fatigue.
I happen to have/had all of the above excepting functional B12 issues. So it's a battle.
Definitely an A grade for your reply. And thanks for taking the time to share. It underlines again how conditions are interlinked, have similar symptoms and are just very complex in themselves and even more so in combination. I will pursue the thyroid and Addison's leads and see where they take me.
Thyroid should also be tested around 9am even though doctors may say say it's not important. Have a look on the thyroid forum , lots of posts & good advice re thyroid and adrenals. healthunlocked.com/thyroiduk
One more thing i just remembered 😂 High blood sugar and (pre) diabetes can also make you feel awful. I would ask for an HbA1c test, it measures a sort of average long term blood sugar level. Best to also get RBC markers like MCV, MCH, MCHC, RDW, and iron measured because any distortion there can distort Hba1c.
I guess it would depend on the issue, some things gradually worsen especially chronic issues, other more acute problems can go more quickly.
Also worth posting actual results here. What is considered the 'normal range' by the lab may not actually be optimal for an individual. For example my Vit D level of 21 was considered 'normal' (range >20) but i felt a lot better when it was around 50.
I will do so. I've become very aware during my crash course in B12D /PA that test results are sometimes dubious to say the least. I've had to learn to trust my symptoms rather than tests. But I guess they give medics a scientifically based set of facts that they feel they can rely on. Still no consideration for the individual, though. And who knows who created the normative framework in the first place. If it's anything like the treatment protocol.....!
It's important to look for trends in your test results. For example if you've been diagnosed with PA then you should start asking for iron full panel, serum Gastrin vitD etc. these are not normally in a blood panel. With PA serum Gastrin is indicative of PH levels in your stomach or amount of acid. High serum Gastrin equals low stomach acid. I watched my Gastrin slowly increase over time and now it's over 1000 and my stomach PH is 6 meaning mostly no stomach acid. Same with serum ferritin, keep an eye on trends as they are very telling. If ferritin drops below 100 then be concerned. See my post on IDWA. I have my blood tested a minimum of every three months.
I was/am a adrenaline junky. I theorize that it is how my body adjusted to a lifetime of B12 deficiency the result of an inborn error of processing B12.
When 20 years of age I used to be a connector, one of those crazy people who walked steel beams 80' in the air. I know someone who could no longer take the stress of being a connector and is now a medic on an ambulance squad in one of the roughest cities in Massachusetts.
As a self treat one of the hardest things to adjust to is not operating on adrenaline. It has been my go to my whole life. Go to exhaustion then recover. Would still be doing it if my body could stand it. This is better for now.
Brilliant Wizard6787I, too, have been adrenaline junkie and still am. Not on steel beams 80' in the air but equivalent of that emotionally. It began very young and became hard wired. A serious illness at 20 left me with a life-long deficiency B12 deficiency which morphed into PA with PPIs in my late 60s. I have said that where my health is now is chickens coming home to roost. Breaking the adrenalin dependence is the hardest work of all, body and mind. Adrenalin is my go-to pattern and the motivation to break that dependence at so late a life stage is what keeps moving me forward now that I can self-treat and begin to take back control.
So, thanks so much for sharing. I'll remember your beam when I feel an adrenalin moment coming on.
I'm 43 and feel exactly the same. I have to decided if I'm having a wash or doing the dishes I'm that tired.I changed my b12 to the one that starts with a H, cannot remember what it's called so I hope it's not that causing me to feel tired.
I do however feel my adrenal glands are shot due to the life I have had.
I'm having my bloods checked this week to make sure all is fine. Not sure what they are testing but I did ask for ferritin so maybe they will do a full blood count.
I have autism and bipolar so I get so nervous at the doctors as in the past they have put my symptoms down to depression fatigue only.
I know the difference as depression is the desire not to do anything, but this is I want to do things but my body is screaming at me to rest as its just so hard to move about.
Healthy diet, rest and little to no stress I'm sure will help adrenal. I'm also seeing a homeopath next month.
Hi Orchard 33 .. I completely get your theory … and there are lots avenues to explore which others have advised on
I SI EOD and supplement but was still struggling and realised there was a limiting factor. After testing through a functional practitioner I was very low on selenium. I did additional selenium supplement for a couple of months and it definitely was a step up in energy levels.
I stopped supplementing thinking I had topped up but realised quite quickly it was a mistake. I assume that it is one of the nutrients that I can no longer absorb as well and will be supplementing for life.
It’s something you could try for yourself ..the selenium is vital for the mitochondria to function, and they are the cell power source.
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