Diffuse thinner, still no luck

[davvid_1]

Hi all, looking for some advice again as I'm totally lost. 25 yrs old, hair is still shedding like crazy. seem to be a chronic diffuse thinner, approx 3 years now, lost about 70% of my hair.

things I've tried:

-eating excess calories (3000-4000k a day) I weigh 68kg, 5'10, and find this difficult, I just get fat as I am now.
-things I've tried to test for deficiency (usually each I tried in isolation for 3-4 weeks) have been: D, A, K, B1, B2, B3 ,B6, B7 ,B9, B12, E, betaine HCL (to test for stomach acid), magnesium, selenium, zinc, copper, iodine, t3, t4, t3 & t4, aspirin, cypro, gelatin, taurine. Have also tested multiple types of many of these, often combining.
- at all times, and currently, I make sure to eat 2.5 - 3k calories per day, aspirin 5 times a week, k2 every 3rd day, weekly vitamin D (plus weekly hikes, almost daily morning yoga in the sun), plenty of shrimp, milk, OJ, coffee, coconut oil, gelatine, daily taurine, and liver every two weeks.

Have pretty much been scouring this forum, matching symptoms and experimenting with anything to see if it'll help. my thoughts are that losing this much hair isn't normal, and that I've tried everything except the thing that works, but starting to think I may be in denial.

My temps are normal for this forum, its summer so my extremities feel toasty, at night under the covers they feel too warm, pulse however is around 60, and has been low all my life.

Thyroid seems to help but mildly. reduces the shedding if I take at least 20mcg of t3 per day, to the stage where its not excessive, but have maintained this dose for over a year now, with small amounts of t4 in the evening, but developed very uncomfortable thyroid swelling and pain. reduced the dose, and it seems to calm down. Am I making myself hyper? I was definitely losing more hair when I wasn't aware of possibly being hypo, tested for antibodies and all was normal. thyroid is seemingly not helping the shedding anymore and am scared about raising the dose.

blood tests wise, I've done most that are commonly recommended on this forum, nothing significant pops out, TSH was 1.3 when I first got concerned about shedding, before I found RP. now it fluctuates between 1 and 2. prolactin was low, have worked on increasing my cholesterol with low starch etc. albumin, CRP, testosterone, cortisol etc all normal.

my only leads are:
- my ceruloplasmin was below the normal range, copper mid range
- my transferrin saturation was quite high, but normal feritin
- my red blood cells are messed up because of a genetic, 'asymptomatic' blood disorder, thalassemia minor.
- - very high RBC, very low MCV, high RDW, not sure if somehow not enough oxygen is being transported to my extremities, my scalp is quite elastic
- - my bilirubin is high because of the high red blood cell turnover, apparently leads to gallbladder sludge, so I take taurine to help with bile flow.

any comments and ideas are highly appreciated !

 

[Lamp]

I have thalassemia minor as well and also have diffuse thinning.

 

[tallglass13]

I really think your pulse is still too low. I work as a nurse and I see a lot of athletes, or people that doing low carb, with low temps and low pulse. I pretty much stopped losing my hair, and my temps are ,98.1, but my pulse is always 85. And I feel pretty good and I'm nice and warm. If you're exercising too much I would lower that. A lot of the athletes I tend to, are exercising like crazy and their pulses are in the 60s. But they're all very young, so the signs of aging are not shown as badly. I would up the milk, up the fruit juice, and make a pizza or some bread with some heirloom flour. Some starches are needed. Even Ray Peat said in his interview tonight that he used to make a lot of breads and dough.
Don't be a total lazy ****, but lay off a lot of the workout. I would make a spray of some progesterone and some t3, maybe d3, and play around with other ingredients. Massage your scalp a little bit.

 

[mrchibbs]

I really think your pulse is still too low. I work as a nurse and I see a lot of athletes, or people that doing low carb, with low temps and low pulse. I pretty much stopped losing my hair, and my temps are ,98.1, but my pulse is always 85. And I feel pretty good and I'm nice and warm. If you're exercising too much I would lower that. A lot of the athletes I tend to, are exercising like crazy and their pulses are in the 60s. But they're all very young, so the signs of aging are not shown as badly. I would up the milk, up the fruit juice, and make a pizza or some bread with some heirloom flour. Some starches are needed. Even Ray Peat said in his interview tonight that he used to make a lot of breads and dough.
Don't be a total lazy ****, but lay off a lot of the workout. I would make a spray of some progesterone and some t3, maybe d3, and play around with other ingredients. Massage your scalp a little bit.

Thanks for sharing your observations about athletes! @tallglass13

It's really a preconceived idea that's hard to break for most people.

 

[davvid_1]

I have thalassemia minor as well and also have diffuse thinning.

when did your shedding start? many people on a thalassemia forum complain about hair loss too, im trying hard to find a link between this but am having next to no luck...zero research.

thanks for the comments @tallglass13 . To be honest I am very unfit. I try to do a mild hike once a week in the sun, beyond that i do zero cardio, just afew 15 minute home workouts (some pushups and pullups). I have always found my stamina to be poor, could never run long distance, or keep up with kids at school. Kids thought it was weird considering my lean build, but i remember never being able to consistently run 5km. I dont think that is whats keeping down my pulse.
I saw a link between poor stamina and HBA2 which is apparently raised for me.

t3 tends to raise my pulse throughout the day, and i do notice when its beating faster. Not sure why im getting thyroid swelling now though which is frustrating not tolerating the only thing that ever so mildly helps

ive tried scalp massaging, i understand its to help decalcify etc, but my scalp is very elastic and massaging it just leaves my hands and knuckles full of hair

 

[mrchibbs]

@davvid_1

Massage is not something you do when you're still actively losing hair. It only worsens the process. Focus on simple things like raising vitamin D levels, drinking milk and getting good sleep.

If you're still shedding on a daily basis, something fundamental is not right. Don't do a million isolated supplement and vitamins, focus on the core problems. Avoid oral supplements aside from maybe aspirin.

Do a blood test 25(OH)D3 to evaluate if you are even in the optimal range for vitamin D. You can take supplements and not even be close.

Walks in the sun are great, possibly the best thing you can do. Very relaxing, and being exposed to outdoor light is very therapeutic.

Basically, keep it simple. Good, simple foods you enjoy, limit gastrointestinal distress, take transdermal vitamin D to raise your levels if necessary. Drink good milk as it works with vitamin D to suppress excess PTH and prolactin.

If your scalp feels inflamed (which it likely is if you're constantly losing hair), daily aspirin dissolved in hot water with a little baking soda, taken at a meal, is your best bet.

 

[davvid_1]

thanks @mrchibbs, I've found your comments on this forum very helpful! I share a lot of the same views as you. I have been taking a good Vit D, my last result was 45, however I recently reduced as i heard it interferes with ceruloplasmin production, which im giving a shot at raising. And I try to get some sun every morning and on my hikes.

i do drink +- a litre of good local farm milk, and have no issues with digestion, constipation, bloating etc.. its all just confusing as I do feel im doing the basics consistently well ( > a year of high calorie, high protein, pufa avoidance, daily sun, aspirin, and small amounts of thyroid)

 

[redsun]

when did your shedding start? many people on a thalassemia forum complain about hair loss too, im trying hard to find a link between this but am having next to no luck...zero research.

thanks for the comments @tallglass13 . To be honest I am very unfit. I try to do a mild hike once a week in the sun, beyond that i do zero cardio, just afew 15 minute home workouts (some pushups and pullups). I have always found my stamina to be poor, could never run long distance, or keep up with kids at school. Kids thought it was weird considering my lean build, but i remember never being able to consistently run 5km. I dont think that is whats keeping down my pulse.
I saw a link between poor stamina and HBA2 which is apparently raised for me.

t3 tends to raise my pulse throughout the day, and i do notice when its beating faster. Not sure why im getting thyroid swelling now though which is frustrating not tolerating the only thing that ever so mildly helps

ive tried scalp massaging, i understand its to help decalcify etc, but my scalp is very elastic and massaging it just leaves my hands and knuckles full of hair

I think the link is likely very simple. High oxidative stress (cant protect RBCs), poor oxygenation of hair, high catabolism (cortisol excess due to this stress state causing thinning). I don't know what causes thassalemia but a good B-complex + high dose methylfolate (2-3mg), daily value of vitamin E, zinc + magnesium will help promote antioxidant function, especially through glutathione recycling. GSH recycling enzymes are what protect RBCs from oxidative stress (so they don't break), and the B vitamins are especially vital for this. Extra folate also helps RBC production and is actually a recommended supplement for this disease.

 

[mrchibbs]

thanks @mrchibbs, I've found your comments on this forum very helpful! I share a lot of the same views as you. I have been taking a good Vit D, my last result was 45, however I recently reduced as i heard it interferes with ceruloplasmin production, which im giving a shot at raising. And I try to get some sun every morning and on my hikes.

i do drink +- a litre of good local farm milk, and have no issues with digestion, constipation, bloating etc.. its all just confusing as I do feel im doing the basics consistently well ( > a year of high calorie, high protein, pufa avoidance, daily sun, aspirin, and small amounts of thyroid)

Glad my comments can be helpful! :)

Your case does seem confusing. Sometimes it's a matter of staying consistent for a couple of months.

Have you tried dissolved aspirin with a meal? If so, does it make things better? Sometimes we can have underlying inflammation that goes unoticed. It could be an allergic reaction of some sort. Aspirin takes care of much of these issues and can help stop the cycle.

I would explore avoiding gluten or potential allergens in your environment (mold?), and eating more oysters if you have access to them. A zinc deficiency can be more severe than expected when diffuse thinning is experienced.

 

[Lamp]

when did your shedding start? many people on a thalassemia forum complain about hair loss too, im trying hard to find a link between this but am having next to no luck...zero research.

thanks for the comments @tallglass13 . To be honest I am very unfit. I try to do a mild hike once a week in the sun, beyond that i do zero cardio, just afew 15 minute home workouts (some pushups and pullups). I have always found my stamina to be poor, could never run long distance, or keep up with kids at school. Kids thought it was weird considering my lean build, but i remember never being able to consistently run 5km. I dont think that is whats keeping down my pulse.
I saw a link between poor stamina and HBA2 which is apparently raised for me.

t3 tends to raise my pulse throughout the day, and i do notice when its beating faster. Not sure why im getting thyroid swelling now though which is frustrating not tolerating the only thing that ever so mildly helps

ive tried scalp massaging, i understand its to help decalcify etc, but my scalp is very elastic and massaging it just leaves my hands and knuckles full of hair

Started to notice it and got my first comment about it in my early 20s. If you get any good tips for this disorder, I'd love to know. I haven't been on a thalassemia forum in ages, but I do feel a ton better since incorporating a lot of Peat's principles. What's your ethnicity if you don't mind me asking? I'm also pretty lean/muscular for somebody who stopped working out about 3 years ago.

 

[Lamp]

I think the link is likely very simple. High oxidative stress (cant protect RBCs), poor oxygenation of hair, high catabolism (cortisol excess due to this stress state causing thinning). I don't know what causes thassalemia but a good B-complex + high dose methylfolate (2-3mg), daily value of vitamin E, zinc + magnesium will help promote antioxidant function, especially through glutathione recycling. GSH recycling enzymes are what protect RBCs from oxidative stress (so they don't break), and the B vitamins are especially vital for this. Extra folate also helps RBC production and is actually a recommended supplement for this disease.

A long time ago I had a vitamin test and the doctor said I had high b12? (I'm also thalassemia minor). Any idea if there was any connection to thalassemia there? It may have been because I was eating a ton of eggs back then though.

 

[redsun]

A long time ago I had a vitamin test and the doctor said I had high b12? (I'm also thalassemia minor). Any idea if there was any connection to thalassemia there? It may have been because I was eating a ton of eggs back then though.

If you were taking B12 supplements near the time of the test then it would explain why it showed high. But you are not going to get high B12 from foods. It could be poor utilization of B12 since it depends on other cofactors. Perhaps lack of other B vitamins, especially folate but it could be any of them. It would make more sense if folate was also tested and was shown low.

 

[GreekDemiGod]

If your scalp feels inflamed (which it likely is if you're constantly losing hair), daily aspirin dissolved in hot water with a little baking soda, taken at a meal, is your best bet.

What's the reason for dissolving it VS simply ingest it orally?

 

[davvid_1]

A long time ago I had a vitamin test and the doctor said I had high b12? (I'm also thalassemia minor). Any idea if there was any connection to thalassemia there? It may have been because I was eating a ton of eggs back then though.

i have Mediterranean origin, yourself? I will definitely update you if i find anything (please do the same lol). I did get b12 tested before i'd touched any B supplements, and it was 512 pmol/L, which i read once on this forum was over the range, but have since found it to be considered normal. But that led me to try b1 and b2 as perhaps I wasnt utilising it right - i think charlie mentioned a lot of work from Lonsdale concerning this - but still no difference for me.

thanks @redsun, your comments are always insightful. GSH recycling has given me something else to research. what causes it is the partial lack of ability to synthesize the β-chains of hemoglobin

 

[davvid_1]

for the guys that get this notification. Do you think goitre could arise from letting calories slip while still taking t3? got my TSH checked and its 1.7.

also, perhaps any insight into the shape of shedded hair? at times the hair id shed was inconsistent in thickness, often part of the hair shaft being thicker than than the rest, while also showing kinks and curves. the colour has lightened alot.

and sometimes, randomly, when i apply oil or something, i shed a crap load of extremely thin, small frizzy hair, almost like fluff. youd think its a pets hair or something. this seems to be when my hair shedding is not so bad, could this be what new hairs growing are like? i understand this is alot of speculation, but i dont see it it talked about much. im thinking depending on metabolism/blood flow, the follicle may only sometimes get fed the required nutrients, making it irregular.

 

[Vins7]

Any update?

 

[davvid_1]

Any update?

i found selenium supplementation to reduce shedding drastically. i did haidut's nail test and selenium was below end of range. still thinning and progressing though

 

[Vins7]

i found selenium supplementation to reduce shedding drastically. i did haidut's nail test and selenium was below end of range. still thinning and progressing though

How long have you been supplementing selenium and how long has she stopped shedding? I imagine that slowing down hair loss should sooner or later lead to an improvement in hair density.