Mystery Illness: You guys will... - Pernicious Anaemi...

Pernicious Anaemia Society

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Mystery Illness

Technoid profile image
30 Replies

You guys will definitely enjoy this one. I can't say anything else yet until you watch it to avoid spoilers.

m.youtube.com/watch?v=kXvgY...

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Technoid profile image
Technoid
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30 Replies
jade_s profile image
jade_s

Wow! Definitely had me on the edge of my seat and guessing 😂 I will also wait to comment LOL. In the meantime I need to rewatch the beginning now that I know the answer.

jade_s profile image
jade_s in reply to jade_s

The one they mention about the 21-year old towards the end is also very interesting!

Parlay profile image
Parlay

thank you for posting this. It’s really interesting and she’s very passionate so great to listen too, a good point without trying to “be a spoiler” is how many people avoid food groups as this particular food group can cause more issues in people whose autoimmune system is already ramped up too much and attacking its own body so avoid this food group?

Orchard33 profile image
Orchard33

Perhaps the first blood test for any malady should be a full panel of vitamin tests. How much did all those tests cost to try and fail to diagnose? How much does a full vitamin test cost? Why are vitamins not viewed as a first port of call, especially with all our modern dietary issues?

Technoid profile image
Technoid in reply to Orchard33

They went to town on testing so many things before asking her a simple question that could have indicated the issue. I think it shows how far back in most doctors mind's is nutrition as a cause of ill health.

MoKayD profile image
MoKayD in reply to Technoid

You're right about talking with patients before ordering tests. My previous GP always spent at least 20 minutes talking with me before starting an examination. He would ask me what I'd been doing and if there were any new changes to my life. I would go on to tell him about my boring life and nine times out of ten he would say, Oh, that's probably what caused this . . . . . I wish he hadn't retired, I miss him.

LynetteinUSA profile image
LynetteinUSA in reply to Orchard33

Exactly! I had to ask for nutrient testing, and that's how my deficiencies in zinc and copper were found!!

MrsTuft profile image
MrsTuft

I’ve been diagnosed with scurvy twice - and I eat loads of fruit and veg. Doctors have no clue what to do. Neither did my nutritionist. It gives me bruises, bleeding gums and fatigue. I take massive amounts of vitamin c now and I still bruise like a peach. 🤷‍♀️. My only theory is its malabsorption from my coeliac disease despite strict adherence to the GF diet.

Technoid profile image
Technoid in reply to MrsTuft

Massive amounts of Vitamin C from supplements can act as an oxidant rather than anti-oxidant but go by your blood tests for sure. I hadnt come across coeliac disease affecting Vitamin C absorption before, but I came across the paper below with just such a case where they used intravenous Vitamin C to resolve. Maybe if your vitamin C levels are still very low that could be something to look at?

ncbi.nlm.nih.gov/pmc/articl...

MrsTuft profile image
MrsTuft in reply to Technoid

This is fab thanks. I’ve never read that vitamin c is taken up in the terminal ileum similar to B12! But this article as expected says it can happen as a result of non adherence with the GF diet. I’ve been strictly GF since age 12 - I’m now 47! Bloods confirm both no gluten is in my system and scurvy. Nobody can explain it. I take pure absorbic acid powder twice a day which helps. I will try a venous infusion now based on this. Thank you! And of course I eat loads of fruit and veg. It’s so weird.

Technoid profile image
Technoid in reply to MrsTuft

yes, I don't understand. In the case from the research paper, a stricter adherence to gluten-free eventually resolved the absorption issue. Maybe something else is happening but its above my paygrade.

Be cautious if you have a risk for kidney stones.

MrsTuft profile image
MrsTuft in reply to Technoid

It seems to be above the pay grade of everyone I’ve ever asked! Thank you.

jade_s profile image
jade_s in reply to MrsTuft

In Germany I found this vit C but it is IV only. Cannot do IM or SC, possibly because it needs to get dorectly into the bloodstream . versandapo.de/pascorbin-inj...

Perhaps those health spas that do IVs will have something like this. If you have a Get A Drip in your area they do Vit C IVs

getadrip.com/iv-vitamin-dri...

MrsTuft profile image
MrsTuft in reply to jade_s

Thabk you yes I think I’ll try a drip at Westfield next month. It’s so annoying. Only I could have scurvy when I eat such a good diet. Something is clearly amiss!

jade_s profile image
jade_s in reply to MrsTuft

Yes very bizarre!! Could it be some vit C metabolism problem? I know nothing about it. I just did a super quick search online and found these regarding genetic issues

academic.oup.com/clinchem/a...

mdpi.com/2072-6643/12/7/1963

But they don't really mention treatment.

There may be more if you search google scholar

scholar.google.com/scholar?...

Thrones12 profile image
Thrones12

That was interesting thank you. I’ve just recently found out that this could be causing some of my problems too,I’m trying some vit c supplements but I’m feeling a bit hesistant about it because I have recurring kidney stones, have 4 just now in left kidney and I also have high ferritin it’s so hard trying to do this on your own when you feel as rough as I do just now. I’m thinking it’d prob be a good idea to have my vit c levels tested so I’ll arrange that asap. Thank you this and thank you to Denise for making me question my vitc symptoms too. X

Technoid profile image
Technoid in reply to Thrones12

Yes, high supplemental vitamin C doses are a risk for kidney stones. In theory best to get from diet but in the case of absorption issues this complicates matters :(

helvella profile image
helvella

Oedema – didn’t say whether it was pitting or non-pitting!

Non-pitting oedema is a hallmark of hypothyroidism. Very few other causes.

All the symptoms in the link list can be associated with hypothyroidism.

✔︎ Fatigue

✔︎ Bruising

✔︎ Petechiae

✔︎ Joint Pain

✔︎ Muscle Pain

✔︎ Anaemia

The paper list included von Willebrand’s syndrome – and acquired von Willebrand’s can be caused by hypothyroidism. (And could be the cause of the petechiae.)

Maybe I missed it, but I would certainly have done TSH, FT4 and FT3 tests very early. A lot less expensive than CT, MRI, etc.! With non-pitting oedema it would almost have been the confirmation. With pitting oedema, it would be another exclusion, and it can be difficult to be certain if someone has a degree of non-pitting in the context of pitting oedema.

(Yes. We thyroid people see thyroid disorder everywhere we look. But, given the prevalence at possibly up to 20%, a lot of it is real and not imagined.)

I surely can't be the only one who finds it unsettling that a doctor can produce such an enthusiastic video about how poor their diagnostic path had been! Cost must have been thousands (pounds or dollars). And the time must have seemed an eternity to the patient. In the end, one single and inexpensive blood test did the job. Therefore, put that test early on in any and every case in which scurvy has not been ruled out. Along with thyroid function tests!

If anyone is taking vitamin C supplements, already or as a consequence of this video, be aware that it can interfere with the results of urine dipstick tests:

pubmed.ncbi.nlm.nih.gov/277...

Technoid profile image
Technoid in reply to helvella

Right! it seems like they did the most expensive things first? And only after exhausting these did they ask a simple diet question which would have cost nothing and IMMEDIATELY indicated a likely problem.

helvella profile image
helvella

For anyone taking oral B12, vitamin C affects oral B12. Do not take them close together.

(I don't think this applies to ordinary dietary intake but I'd have to check what level actually matters.)

No - I can never find the evidence for this! But I know I have read it several times over the years.

Technoid profile image
Technoid in reply to helvella

I think its been shown in vitro with large Vitamin C doses but not sure if confirmed in human studies. Good idea to space large Vitamin C doses 4 hours away from any oral B12 out of an abundance of caution. Another reason I dislike high dose Vit C.

Technoid profile image
Technoid in reply to Technoid

m.youtube.com/watch?v=knDB7...

Technoid profile image
Technoid in reply to Technoid

MrsTuft please see the warning ^ about IV Vitamin C.

jade_s profile image
jade_s in reply to Technoid

Yes mainly in vitro studies.

This admittedly old paper from 1980 suggests that vit C malabsorption with b12 was a measurement artifact

academic.oup.com/ajcn/artic...

This newer paper suggests b12 is degraded by ascorbic acid at ph < 8 when it's in the same solution . You have to jump to the very end to read the conclusion.

link.springer.com/article/1...

This paper from 1999 did a population study and found Vit C levels were positively correlated with vit B12 levels. Perhaps someone that supplements one vitamin also supplements others

jamanetwork.com/journals/ja...

A paper from 2017 ashpublications.org/blood/a... cites only 1 from 1978 that says ... something. I'm too tired right now & couldn't figure out what the heck they're trying to say sciencedirect.com/science/a...

So overall conclusion - a multivit with both is probably a bad idea. As for taking supps... no clue. I'm sure there are nore papers but that's it for today.

Disclaimer, i only scanned the text briefly :)

As a side note, this paper is certainly interesting. Low vit C is implicated in megaloblastic anemia!?!?

sciencedirect.com/science/a...

WiscGuy profile image
WiscGuy

The resident who made the video linked in the original post made another video on B12 deficiency. As we all know from the article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency", many patients with B12 with neurological symptoms do NOT have enlarged red blood cells. This resident seems unaware of that.

m.youtube.com/watch?v=RNI9O...

Technoid profile image
Technoid in reply to WiscGuy

indeed. I recently read:

"Neurological complications are present in about 75-90% of people with frank deficiency. These complications appear to be inversely related to the occurrence of the haematological symptoms (Healton et al 1991, Savage et al 1994)"

eatforhealth.gov.au/nutrien...

WiscGuy profile image
WiscGuy in reply to Technoid

It's interesting to see that the articles cited for the information you quoted were from 1991 and 1994. So it's not like this is cutting edge information in 2023.

A question I had for a while, that was recently answered in this forum, is addressed here too:

"Vitamin B12 from the bile duct can also combine with IF, forming an enterohepatic cycle. " So B12 from the liver joins with intrinsic factor in the duodenum, and, presumably, if no, or insufficient, intrinsic factor is present, B12 from the liver cannot be absorbed via the digestive tract.

Technoid profile image
Technoid in reply to WiscGuy

A diet of "bread, french fries and cheerios without the milk".

That surely couldnt cause any issues 🤪

and she says he "couldnt" change his diet even after this happened? Yikes. He was very lucky to have made a full recovery from neurological symptoms. If he continues this diet he's going to have more fun (and I dont mean fun) with the damage thats he's going to be doing to his microbiome, even if he manages to avoid frank vitamin and mineral deficiencies through supplements. I would be ..... mildly concerned.

WiscGuy profile image
WiscGuy in reply to Technoid

If I recall correctly, the resident in the video said the narrow range of foods was related to intolerance to food textures. Even if my memory is failing me, my hypothesis is that the patient has a neurodevelopmental disorder that explains the behavior. Perhaps a therapist trained to work with people in this population might have some success in aiding the patient to adapt a healthier diet. But again, this is all conjecture on my part.

Technoid profile image
Technoid

A deep-dive on Vitamin C. A particularly interesting point he makes near the end which I wasn't aware of was that iron overload can cause a Vitamin C deficiency!

m.youtube.com/watch?v=CAN-U...

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