I had a mineral check via a hair test and a DNA Methylation report via a mouth swab (corrected 16 June as I had them the wrong way round) as suggested by a nutritionist who has been helping me sort my gut and auto-immune issues.
I wasn't expecting much ... but how lovely to be pleasantly surprised for once!
The reports were as if the person writing them had been watching me - they were so uncannily accurate but also revealed one trend in particular that I wanted to share with you guys.
My potassium is VERY LOW despite eating a diet high in potassium, and my calcium was EXCEPTIONALLY HIGH even though I don't have a diet with excessive calcium. To give some context to this, my Calcium to Potassium ratio 17.91 and the "acceptable" range is 1.6 to 3.6.
In a nutshell, and I am still trying to take this in as someone who doesn't even have a basic biology qualification, potassium is needed for my body to absorb calcium properly. Because there is insufficient potassium, the calcium is hanging around in places where it shouldn't, like in my blood vessels rather than going into bones and teeth. So if I increase my potassium, the calcium should then be absorbed into bones and teeth (and hopefully leave no lasting adverse effect 🤞🤞).
Apparently, taking B12 EOD is considered a loading dose which affects potassium, and any more than that is essentially a super loading dose . Clearly, I am in the super dose league.
So I am now on a potassium supplement.
The report also showed, amongst lots of other interesting things which I am still taking in, that my body NEEDS the betaine and pepsin, and B6 which I have been taking.
I know I will sound like an advert but this is based on MY mouth swab and MY hair sample, so take the caution in that context please!
A lot of boat rowing still to be done!
🤗🤗🤗
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Wwwdot
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I will certainly do as I read and digest - my head is reeling and I am trying to reorganise my life so that I have more time to self-treat - I spend too much time caring for other members of my family - but I need to put myself first this time.
I keep dipping in and out of the three reports but so many "big" words and a lot to take in. When I learn things of use to the group I will defo share!
hello dot, I hope you are not too overwhelmed by it all. You sound as though you are working it out okay.
I too am also in the super dose league, so maybe I need potassium and calcium tested. I had private blood tests in March, and it took me quite a while to understand one ratio expressed as a percentage 😵💫.
Thank you Wheat, and yes, I am a bit over-whelmed to be honest. I am not one for blindly "accepting" what I am told, and to date the "why?" part of me has saved my bacon on many occasions!
The reports are complex, but I am working through it with a glass of red wine - even though "alcohol" is listed as an inhibiter to folate absorption - turns out I have genes that inhibit folate absorption so I will need to supplement differently. So I thought "why not have a glass of wine and unwind?" as there is no absorption to stop because my genes got their first!
At least, through my lens, that bit of info appears to be a silver lining - until someone comes along and corrects my tentative, optimistic logic!
oh dot, thank goodness you have a glass of wine to help relax and be blowed, but I like your reasoning! I have a treat of strong filter coffee in the morning and be darned if it apparently depletes B12, after all I m a super doser.
Yes, new information is good but the researching to confirm facts is very time consuming. I cannot speak for others but I ve learnt to check from negative medical outcomes.
I have always questioned the coffee /B12depletion - yes if I get B12 via my stomach but what if my B12 bypasses the stomach via an injection? Does the coffee go chasing the B12 in my blood to deplete it!?
I may have some good news on the caffeine front - it appears to be a positive contributor from first reading … but got my optimism lens in at the moment!🤣
Enjoy! I also have a freshly ground coffee in the morning and sometimes a second too, later in the day. We have to be grateful for small mercies!
The nutritionist I am with suggested it. I was VERY skeptical but after months of getting nowhere, I gave in and agreed.
So glad I did. As I said it’s uncannily accurate in the description of my symptoms yet all I did was send in a swab and a lump of hair! Still got a tuft of hair at my crown as I slipped with the scissors Woddy Woodpecker’s sister!
Oh let’s he we get a breakthrough between us!
PS not implying at all that you have not had break throughs because you have in abundance!
Dear all, Just to clarify my post a minute ago - I am in Australia, and I will ensure that anyone dietician or nutritionist I consult will have the appropriate certification AND registration in Australia (this is following a related post about being 'careful' of nutritionists).
That’s quite a trek! Yes so important that any non-mainstream assistance is well qualified - having said that qualifications alone do not assure common sense as we all know. We certainly need to keep our wits about us and silo thinking and tunnel vision risks a false turn.
What I have learned is that we may need to self treat B12 “for life” but the supplementation we need is dynamic and changes as we recovery. I often recall an Irish lady who was my health visitor after my son was born - I was struggling to find a rhythm and routine as his needs kept changing and she said “Of course they will change and you must mirror his needs, my dear! And her definition of a routine was anything that happened once! I loved her as I felt so empowered after that wisdom. Same applies here - our bodies are changing and we must learn to listen and learn and adapt!
In a way this disease is a blessing as I now know that with the knowledge I am gaining I will enjoy better health overall. I was ignorant before but I still had this disease.
Suspect my mood is lifting as this is an upbeat response!!
Hi imho it is great you feel you have someone who actually listened to you but please, please, be very cautious with potassium supplementation. Potassium directly affects heart function and needs a proper blood test for accuracy.both above and below range needs careful assessment. If there are any renal issues again this needs to be taken into account since kidneys very much linked to potassium (high or low).
HiWwwdot, I have no knowledge regarding hair sampling, mouth swabs relating to electrolytes but do know for sure that the blood ranges for potassium, also calcium,sodium clorides etc have a very definite range that they need to stay within. any deviation either above or below needs adressing. That said the ranges given for you hair etc will have no bearing on your blood levels. A potassium blood level outside of the strict range will give noticable, and often very serious effects, AF, palptations, dizzyness, fainting, nausea and in extremis coma,and many more that would be undeniable, it really isnt something to mess with and is never recommended to supplement with sure knowledge of blood test result. Its very sensitive and slight dehydration or too much peeing can affect it but unless extreme should not skew it out of range. I have no idea what effects you are feeling with your health but if those are how you feel it would be prudent to get those plus renal blood test done before any supplementing imho.
You really need a blood test for calcium to get a true reading. High normal calcium can be caused by HYPERPARATHRIODISM. This disease takes calcium from your bones and it goes into your blood stream.
Thank you both again for your contributions to this post. Just to give some context - I have been using a very qualified nutritionist for about 8 months and I was diagnosed with Pernicious Anaemia in October 2022 - so not quite 2 years ago.
My health at that time was dire and I was experiencing significant B12 deficiency symptoms and IBS gut issues which crept up on me over a period of time. I have always been diet conscious in that I eat a wide range of foods and rarely eat refined and processed foods preferring to cook from scratch.
The nutritionist took a full health history, blood tests etc as well as the input from a B12 deficiency specialist and it is within that context that I self-treat and manage my PA.
Over the last year, I have successfully "rebuilt my gut" to the point where I can at least eat now without pain, bloating or spending ages in the loo. On the back of that I have been able to increase my mental and physical activity to a sensible level in that I have been able to return to work.
The results, whilst I accept are not as specific in some areas as a blood test, do make sense within the context of my B12 self-treatment regime which comprises injecting B12 daily.
I appreciate your cautions because it is very easy to have tunnel vision when outcomes appear to make sense within the personal context of one's experience. I will endeavour to get some blood tests to explore the potassium and calcium further.
Once again, your contribution is very much appreciated.
Well that's all very very interesting! I really want to get a nutritionist to look at my bloodwork or to even run their own blood work. I need to find somebody like that here in the United States. I sure hope this makes you feel better. I'm struggling with something and I'm not real sure what it is. Suddenly my rbcs are down and all my blood work is all over the place. This makes me really want to find one. Thanks for this. Good luck!
Wwwdot, I would steer well clear of any "nutritionist" who claims to be able to check your mineral levels with a mouth swab and "methylation report" from a hair sample. This just isn't how it works and I have studied nutritional intake biomarker testing.
In my opinion you would be better off with a registered dietician who is actually qualified to advise on these sort of things.
You cannot easily test for adequate dietary intake or absorption of Calcium because the body will draw Calcium from bones to ensure Calcium is maintained within tight parameters in the blood. Hair mineral analysis is mostly nonsense and can give misleading results that do not necessarily reflect tissue levels.
The way nutritionists like this make their money is by providing more information (large reports etc) than a real dietitian would provide, identifying "problems" that don't really exist and selling supplements to fix the imagined issues. The reason a dietitian wouldn't provide that kind of information is because the tests you described do not produce reliable information.
A "nutritionist" does not care about this because they are not held to professional standards of conduct and the more "information" they provide you, the happier you will be with the service and since most people are not nutrition professionals, it is unlikely they will pick up on the fact that the tests and the information provided are nonsense.
As I said before, a B12 loading dose will not affect potassium unless you had severe anemia prior to commencing treatment and even then, the effect is transient.
If you have a halfway decent diet and we discussed diet enough that you know what I mean by that, then you probably don't need a potassium supplement - I would advise consulting with a genuine nutrition professional on this such as a registered dietitian - the advice you're receiving is not professional - it is wasting your time and money and could potentially even be a risk to your health.
Thank you for taking the time to reply and as usual with such insight and thought.
I have consulted with two fully qualified dieticians - one NHS and one private. The NHS dietician told me to eat more cheese and the private dietician told me all I needed was more vitamin C (lemon cheesecake diet🤪🤪. I made no progress whatsoever. My GP practice is not interested at all. I have had to wait 21 months for an “urgent” referral to a gastroenterologist as I was barely able to function and eating was becoming increasingly challenging - after all that waiting and urgency I now have a 15 minute phone call next month.
The person who has been supporting my self treatment has this bio :
“PGDip mBANT rCNHC
X is a Registered Nutritional Therapist and Functional Medicine Practitioner (IFM) and specialist in brain health, neurodiversity, neuroinflammation, mood disorders and autoimmune disease.
X qualified with a distinction in Nutritional Therapy from the world-renowned College of Naturopathic Medicine and has undertaken their Functional Medicine training with the industry-leading Institute of Functional Medicine in the USA.
X has undertaken a wide range of advanced training with certification and qualifications including:
* Psychiatry Redefined - Dr James Greenblatt’s Functional and Integrative Medicine for ADHD
* Kharrazhian Institute training in Mood disorders, Neuroinflammation, Childhood developmental disorders & Autoimmunity
* Dr Dale Bredesen’s ReCode Alzheimer’s Protocol for preventing and reversing cognitive decline
* Nutritional Genomics Practitioner with Lifecode Gx
X is regularly updating their training and qualifications - travelling worldwide to keep up-to-date with the latest knowledge in the industry.
X is also a member of the following professional bodies:
* The Royal Society of Medicine
* Institute of Functional Medicine
* British Association of Nutrition and Lifestyle Medicine (BANT)
* Complementary and Natural Healthcare Council”
I know it’s not orthodox but I have been able to improve my health with this person’s input and I have been able to return to work after an absence of 18 months and I can now eat with no ill effects like I had before.
However, I do hear your wise words and I will go and beg my GP to do my bloods as I am due another test since it’s 9 months since my last blood test. If they refuse then I will get a private blood test because I value your opinions and as I said earlier when outcomes are improving, it is easy to become blinkered and let your guard down.
I spoke with my GP yesterday and I think they have had a SIM transplant!
They have agreed to the following blood tests:
Full check of liver function
Complete blood count including liver efficiency
Vitamin D
Iron panel
potassium
calcium
folate
magnesium
They then OFFERED to include a thyroid function test and another IF test (last one was negative 2 years ago, but they said Gastroenterologist I am "seeing" next month may insist on another).
I am now booked in for a blood test on 1 July! Happy days!
Feeling brave I asked that in the context of an auto-immune PA diagnosis, and having had only six loading doses, and finding I need B12 SI every day, would he consider prescribing me 1mg hydroxo every day as it would not be too radical given para 1.5.5 on 2024 NICE guidelines.
Their response was that they have no direct experience of PA (I felt like saying "What about ME???" but I kept quiet), but that if the Gastroenterologist supported it, then they would prescribe it.
Thank you for a great post regarding the potential benefits & role of a nutritionist. I am thinking of seeing one and it is clear that their skills set is supplemental to medicine (I doubt whether GP's would consider these investigations - they certainly have not in my case). Regards Martin
I have been supplementing Vitamin D as I was very low but that supplementation has stopped now. I think a blood test is needed to get a "line in the sand" so to speak!
Thank you for your contribution to this discussion, very much appreciated.
Thank you for sharing. I checked my chart and I had had a MTHFR test years ago. I have ordered a hair test and will evaluate the usefulness to me when the results arrive.
I my reading about the hair test I did find a lot of rhetoric by physicians/applied scientists that evaluated we have always done blood tests therefore they are gooder. I also have come to find that those in the medical field unknowingly use the term gold standard when golden standard for those in the medicial field would be more accurate.
Thank you for the feedback, it will be interesting to see what you learn.
Due to an incident that happened to a family member recently, there is talk of doing a hair sample to determine if certain substances were present in the body 6 months ago. Apparently, the use of hair sampling to establish exposure to substances is well established in some fields such as forensics. Apparently, whilst a hair sample will not necessarily disclose the static "now" position of the blood, it can reflect historic trends.
I certainly think that looking outside the accepted medical field box of tools is necessary, if we are to move forward. The information from a mineral analysis is complementary to existing medical diagnostics.
Great to hear about someone else using a "functional practitioner" to help find a way through to better health. It was a positive game changer for me.I was recommended one and was very sceptical but trusted the recommendation and decided it was worth a go. It took place on zoom so no travel.
Things started to improve almost straight away.
Yes you may have to trial a few things but it all becomes part of your diagnosis. As things improved so the next small change was worked on. You don't have to buy or take the supplements but the tests and results or changes you make, do provide info to take back to your GP and dietician. It was great to have someone fighting alongside me and providing data my own GP wouldnt or couldn't test for.
I say it is definitely worth investigating if you are constantly struggling with gut and digestion as well as PA like I was.
Thank you for much for sharing your experience. It was a game changer for me too although the GPs and NHS medics have kept me at arm's length and not really engaged with any of my progress or even acknowledged it. Having said that, for the first time yesterday, I had a meaningful conversation with my GP.
Your feedback is really valuable as I am struggling at the moment with the desire to get better and back to "normal" although I know the new "normal" will always include self-injecting and also wondering if all this research, adaptation, investigation etc is worth it as it takes so much time and often feels so lonely.
I have come a long way with the guidance and help of my Functional Practitioner but in the early days, I was so bad that the pathway for recovery had to be broken down into very small steps and even had to allow a few steps backward sometimes as even a very small step was too much for my gut to handle.
But there is light at the end of the tunnel, and this is the third "Plan" we are applying and so far it is the first plan that my stomach has been able to handle which is a HUGE win.
I am feeling very tired today and I am sleeping very deeply since starting the third plan but its a good tiredness if that makes sense, I feel as if my body is working hard even when I am sitting or lying still.
I can also hear positive signs too - happy tummy gurgles - how I missed that sound and how I took it for granted and didn't even notice when it went silent! Now I value each little gurgle!
Thank you again for sharing, your contribution is very motivational - and I needed that support!
I am so glad youare making headway. Keep listening to your own body and taking those steps.
I made lots of notes when on the calls to my FP and still refer back to them now and again. I kept food diaries as well linking food to mood. It reminds me how much I progressed in about 18 months and nudges me back or gives me something to try again. I stopped using him ( for cost reasons) when I felt robust enough to keep nudging forward on my own. I now have a much broader diet which has slowly developed as my gut improved and consequently my health improved. He did find out I was selenium deficient which he reckons is grossly underdiagnosed in the UK and his recommended tablets made an instant improvement.
Interestingly I have to steer clear of some of the "healthy" foods my dietician pushed me towards. I will go back if I need to.
I think NHS staff feel honour bound/unable to step outside of their prescribed NICE guidance and protocols and can only treat one symptom at once.
Unfortunately guts don't think like that! And 3 years in I am still waiting to see an NHS gastrenterologist!
Sounds like you are a couple of years ahead of me and it’s so encouraging to read.
Interestingly, my selenium has only just crept into the acceptable range so is defo on the low side. What supplement did you use to correct it or did you do it by food?
Woukd you mind sharing what foods your gut still objects to? I still cannot tolerate bread or pasta but lasagne is ok as it’s such a small percentage. I also find cheddar cheese and Red Leicester difficult.
I am so sorry to hear you are waiting so long to see a Gastro!! I was referred in 2021 then it was upped to “urgent” in Dec 2023 as I was diagnosed with PA and I have my 15 minute telephone appointment next week! I just hope that our self treatment and self awareness skills are appreciated because sometimes it feels like if you are passive and in poor health the NHS loves you more!
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Love your post. 
High serum b12, high MMA and low transcobalamin
High liver levels and low B12
HELP Low B12 low ferretin, low folate and low iron
B12 * Help Please* High then low. I’m puzzled! 
Border High RDW, Low MCV, High TIBC...what could it be?
