22M Cystic Fibrosis Blood Works

PaRa

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203
Hi everyone,
Here are my last blood work, done with my CF meds.
Sorry it’s in French but if you could read I would appreciate it !

Basically :
22
M
Caloric maintenance peat style (fruits rice , dairies and beef essentially, some eggs, honey,.. some sprouted and sourdough products.) mod-high prot high carb lowish fat and low pufas since some months ( never feel as bad as when consuming nuts or fatty fish, infernal brain fog, sluggish everything,...)
Was lifting weights 3-4 times a week before the new lockdown (France)

supps are taurine, mgchloride, digestive enzymes, C, some B complex, glycine when on hand and creatine when working out
Lot of salt bc of CF

CF drug is orkambi (Ivacaftor and lumacaftor)

1,70meter, 63ish kg, under 15 BF
I have bad hair like NW2 at least, lipofuscin, bad skin, cold feet’s and hand
Acne and keratosis pilosis
Hyper carotene Mia when consuming 1 carrot or yam or whatever carotens)
Hard to put on muscle mass (insulin resistance ? Hba1c is ******* high but it’s better than 6 months sooner when high starch veggies fish, way more Non sfa)
Lot of bloating when fiber foods
High dose of Bs and thiamine with fruits or sugar and salt makes my veins popping like never

Seems iron overload (low ferritin, high transferrin And low rbc) will try beef liver for copper
More milk instead of beef , coconut and fruits (plus it’s easier to digest for me)

tsh was 1,5 there is 1 month


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Recoen

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How are your temps and pulse?

Is your CF effecting your lungs, pancreas, intestines, liver, and/ or kidneys?

Are you still active even with the lockdowns?

The wiki for Orkambi says it helps the CFTR folding and also helps the Cl channel. Ling, Szent-Gyorgyi, etc discussed the cytoplasm structure being crucial for protein folding and also intra- and extracellular movements. Ling said the cardinal adsorbent for the cellular water polarization is ATP. Do you have an organic acids test by any chance? That will tell you how many organic acids you’re wasting from the Krebs cycle which is an indication of how much ATP you’re making.
 

PaRa

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How are your temps and pulse?

Is your CF effecting your lungs, pancreas, intestines, liver, and/ or kidneys?

Are you still active even with the lockdowns?

The wiki for Orkambi says it helps the CFTR folding and also helps the Cl channel. Ling, Szent-Gyorgyi, etc discussed the cytoplasm structure being crucial for protein folding and also intra- and extracellular movements. Ling said the cardinal adsorbent for the cellular water polarization is ATP. Do you have an organic acids test by any chance? That will tell you how many organic acids you’re wasting from the Krebs cycle which is an indication of how much ATP you’re making.


First Thanks for responding


When waking up I m feeling cold as **** and pulse is low, hands are 95% never warm, no veins popping, they appear if doing some cardio tho
I’m in the 60 at rest (was as low as 50 some months ago), will track it more accurately (and temps)

I’m not really active because of lockdown and work, just 1+ hour of quick walk and some push up... it’s ******* annoying

yeah orkambi help to potentiate CFTR channel that doesn’t work correctly in CF,

Never had organic acid test ....



I find that Meat +warm white rice with lot of salt and a ***t ton of thiamin help to raise the temp but after I crave sparkling water and end up bloating and cold

I love milk but it makes me instantly cold


What about :

High blood potassium
low ferritin
High transferrin
Low igf1 (tho I’m balding Lmao,my igfbp3 may be crashed)
 

Recoen

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592
You’re welcome.
Your urea is high and albumin low. I know you said you’re eating moderate protein. Do you know your GFR? I don’t know French so it’s very likely I missed it in your labs.

Did they run tsh, T3, revT3, and T4? What about prolactin? How is your digestion?

If I remember correctly veins popping is usually indicative of a stress response.

Have you tried warm milk with sugar and some salt?

High blood potassium goes back to what I was saying about the cytoplasm structure. So not making enough ATP according to Ling.

How much red meat do you consume? It sounds like you’re getting a good amount of B1. What about B2? Have you tried topical or a suppository for Bs? What about taking smaller amounts throughout the day?
 

PaRa

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You’re welcome.
Your urea is high and albumin low. I know you said you’re eating moderate protein. Do you know your GFR? I don’t know French so it’s very likely I missed it in your labs.

Did they run tsh, T3, revT3, and T4? What about prolactin? How is your digestion?

If I remember correctly veins popping is usually indicative of a stress response.

Have you tried warm milk with sugar and some salt?

High blood potassium goes back to what I was saying about the cytoplasm structure. So not making enough ATP according to Ling.

How much red meat do you consume? It sounds like you’re getting a good amount of B1. What about B2? Have you tried topical or a suppository for Bs? What about taking smaller amounts throughout the day?

well I have 120-200 g protein/day hence the « moderate/high »
Sources are beef and dairies
Beef consumption goes from 100g to 500g depending on the day

I have to ask my CF doctor for previous blood works as they don’t send them me, what they send always is pulmonary mycology and bacteriology


All I had recently was TSH only, was 1,5 so not that bad but seems to not say much when alone...
Prolactin never tested, but pectorals and nipples are fatty (not gynecomastia, just fat repartition) despite bodyfat under 15% (high pro symptom ?), tho I can come very fast (low pro symptom ?) so don’t know what to think without blood

Digestion always were chaotic, bc of CF, tho not thaaaaaat bad now, but I always bloat, not farting a lot now but odor and poops are nuclear, stay away
Fat (coconut fat is really digest tho), whole grains, legumes, nuts and seafood/fish are really hard to digest, so I avoid them, my every meal supplemental enzymes help somewhat but it’s still chaotic

my veins are popping if I feel good, relaxed and hot....

milk, even hot makes me cold after some minutes, too much liquid I think

I take a good concentrated B complex orally separated in doses from morning to mid afternoon,

one caps is


Thiamine (B1) 50mg 4545%
Riboflavine (B2) 50mg 3571%
Nicotinamide (B3) 50mg 313%
CDP-Choline 50mg -
Acide pantothénique (B5) 50mg 833%
Pyridoxine (B6) 25mg 1786%
Biotine (B8) 500µg 1000%
Myo-Inositol 50mg -
Acide folique (B9) 500µg 250%
PABA 50mg -
Bétaïne TMG 50mg -
Vitamine B12 500µg 20.000%

Riboflavine ( sous forme de Riboflavine 5-phosphate de sodium), Triméthylglycine (TMG) Bétaïne, acide pantothénique (sous forme de D-calcium-de pantothénate), CDP-Choline,Pyridoxine (sous forme de Pyridoxal-5-Phosphate Monohydrate), Thiamine HCl, Nicotinamide, acide para-aminobenzoïque (PABA), Myo-Inositol, D-Biotine, Acide folique (sous forme de sel de glucosamine du (6S)-5-MTHF, Quatrefolic®), vitamine B12(sous forme de Méthylcobalamine, Hydroxocobalamine, Adénosylcobalamine), enveloppe des gélules HPMC.
 

PaRa

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Low hematocrit, could be because of low estrogen ? Estrogen raises iron absorption

tho I have lipofuscin so... iron must be present in the body, so liver ? For copper
 

LLight

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Hi,

I find this study interesting :
Mammalian osmolytes and S-nitrosoglutathione promote Delta F508 cystic fibrosis transmembrane conductance regulator (CFTR) protein maturation and function - PubMed

"In contrast to isoosmotic conditions, hyperosmotic stress led to the proper folding and processing of Delta F508 CFTR. Furthermore, three of the cellular osmolytes, when added individually to cells, proved effective in promoting the proper folding and processing of the Delta F508 CFTR protein in both epithelial and fibroblast cells."
I see you already take taurine and inositol, which are osmolytes. You could also add betaine/TMG.

Water restriction could help you because it increases osmolarity and normally lead to the accumulation of osmolytes in cells.

There is a scientist (Laszlo Boros) who promotes a high fat (ketogenic diet) diet with low water consumption. Not necessarily advising that to you if you prefer high carb but it's just to tell you that it's not totally mad to "go low fluid".

Finally, my hypothesis is that water restriction/dry fasting could help with infection and the efficiency of your immune system.
 

PaRa

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Hi,

I find this study interesting :
Mammalian osmolytes and S-nitrosoglutathione promote Delta F508 cystic fibrosis transmembrane conductance regulator (CFTR) protein maturation and function - PubMed

"In contrast to isoosmotic conditions, hyperosmotic stress led to the proper folding and processing of Delta F508 CFTR. Furthermore, three of the cellular osmolytes, when added individually to cells, proved effective in promoting the proper folding and processing of the Delta F508 CFTR protein in both epithelial and fibroblast cells."
I see you already take taurine and inositol, which are osmolytes. You could also add betaine/TMG.

Water restriction could help you because it increases osmolarity and normally lead to the accumulation of osmolytes in cells.

There is a scientist (Laszlo Boros) who promotes a high fat (ketogenic diet) diet with low water consumption. Not necessarily advising that to you if you prefer high carb but it's just to tell you that it's not totally mad to "go low fluid".

Finally, my hypothesis is that water restriction/dry fasting could help with infection and the efficiency of your immune system.

Will read thanks for joining !!

i tried keto but no way it’s just the hell, digestive wise and electrolytes imbalances, no energy, can’t breath etc
 

LLight

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Will read thanks for joining !!

i tried keto but no way it’s just the hell, digestive wise and electrolytes imbalances, no energy, can’t breath etc

That's fine, a keto diet is not at all required to practice water restriction or dry fasting :)

If you are interested by the idea, have a look at this thread which contains some theories on the mechanisms: Water Structure, Osmolytes And Cancer

You say you have keratosis pilaris which, if I'm not mistaken, is thought to be a symptom of bad retinoids metabolism, while dry fasting could help with that (enzymes dealing with retinoids could be upregulated).

There are some testimonies about improved digestion and energy with dry fasting too. And I think it could also help for your HbA1c (and your CRP).

Of course, if you happen to try that, be cautious (take it slow and progressively) and research if the meds you take cannot be an issue with potential dehydration.
 

PaRa

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That's fine, a keto diet is not at all required to practice water restriction or dry fasting :)

If you are interested by the idea, have a look at this thread which contains some theories on the mechanisms: Water Structure, Osmolytes And Cancer

You say you have keratosis pilaris which, if I'm not mistaken, is thought to be a symptom of bad retinoids metabolism, while dry fasting could help with that (enzymes dealing with retinoids could be upregulated).

There are some testimonies about improved digestion and energy with dry fasting too. And I think it could also help for your HbA1c (and your CRP).

Of course, if you happen to try that, be cautious (take it slow and progressively) and research if the meds you take cannot be an issue with potential dehydration.

general advices from CF medical centers are to drink A LOT like 3L a day to help flush the mucus out so not really water restrictions ahah


I took some temps with a « contact/IR » thermometer before and after the night
On the front head and under arm were ~37C before night and ~36C when waking up, my frozen hands were barely at 28C both before and after lmao

Otherwise, my iron panel + hairloss, always cold and numb hand and feets + fatigue, paleness, heavy legs and water rentention, tinnitus, etc seems to point to iron deficiency or anemia, and CF people are often iron deficient bc of bad absorption and constant inflammation/infection
Doc was prescribing me iron pills when young (when near 10 years old) and I remember my mom telling me « your hands are so hot » when it was snowy, I was without gloves and she was freezing, cut it years ago, doesn’t exactly remember, and now I’m a bit iron phobic bc of ray peat plus I have some lipofuscin on arms so.... a little lost
 
Last edited:

LLight

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Vitamin B1 in other form than the water-soluble one are sometimes considered to be better (for example by the Pope of thiamine research, Dr Lonsdale, the author of the paper above) because cells do not seem to uptake this form well enough.

Interestingly, hyperosmolarity could increase the uptake of the water-soluble form:
Also, osmotic stress could induce the expression of the thiamine transporter 1 by activating the Slc19a2 gene (Thiamine transporter 1 - Wikipedia): Transcriptional regulation of gene expression during osmotic stress responses by the mammalian target of rapamycin

"We validated by RT–qPCR a sample of 14 genes chosen by their robust induction by osmostress in the microarray experiments, and also illustrative of Torin1-sensitive and -insensitive, as well as NFAT5-dependent and -independent genes (Figure 2B).

This analysis confirmed the sensitivity to Torin1 of the NFAT5-dependent genes Ddit4, Ddit4l, Slc1a3 and the NFAT5-independent Amd1, Bpgm and Slc19a2 (Figure 2B)."
 

PaRa

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Hi everyone, back with SOME (what my cystic fibrosis GP prescribed to test) bloodW, I have huge fatigue, memory vanish instantly, bodyhair dont grow, beard neither, lot of acne on face scalp, constant brain fog, slow as ****, mood swing, depressive, doesn't even know what libido means, I feel like ******* cold and hands and feets are dry+ frozen all day long, night sweat sometime, etc

so here we are with what he prescribed me to test :
all are serum, 7.55 am, fasted


testosterone total
8,4 nmol.L-1 (6,1-27,3)
2,4 ng.mL-1 (1,8-7,9)



testosterone free
11,4 pmol.L-1 (28,8 - 139,0)
3,3 pg.mL-1 (8,3 - 40,1)


ACTH- corticotrophine
7,6 pmol.L-1 (1,0-10,7)
34,4pg.mL-1 (4,7-48,8)



cortisol
631 nmol.L-1 (185-624)



so that's what high cortisol low test makes me feel
 

PaRa

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I wish he will want to do a complete panel to see what's going on, but well it's not a preventive system here ,he said me that for example a TSH of 10 isn't hypothyroid, for him you are hypothyroid if your TSH is at 600-700 or even 900 lmao I didn't said anything, just thought in my head (wtf TSH higher than 2 is likely hypo lol)
and he didn't wanted to retest myTSH now "BeCaUSe you Ate OySterS in the last 2 weeks so TSH wOulD be biaised"
TSH was near 1,5/1,6 there is 3 months
if anyone have ideas of some very important parameters to test I could ask him ...
 

LLight

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Iodine + selenium?
 

PaRa

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Iodine + selenium?
i have dried kelp on hand (didn't tried high doses tho) and consume lot of dairies so iodine may not be that low, selenium I don't really know, I consume mainly dairies, fruits and beef that aren't high, plus sockeye salmon, coconut and sourdoughthat are higher but...
I ate lot of oysters recently but didn't notice any improvement...
maybe try to supp selenium, recently saw Taeian clark recommends high dose selenium (like at least 200mg day) for estrogen control in PCOS and Cystic fibrosis so why not !
 
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