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Hi!  I had my ferritin tested for the first time recently and although I fell in the "normal" range, I was at the VERY low end of normal and not anywhere close to optimal.  i've been struggling for years with shortness of breath, fatigue, irritability, and lightheadedness, so this discovery makes perfect sense to me. 

 

My doctor suggested I take iron supplements - Slow Fe.  I've started the pills, one 45mg at night with dinner. Although it makes me feel really off in the middle of the night, I'm willing to deal with it in the hopes it'll clear up my issues.  

 

Just curious if anyone has had luck with the supplements. Any thoughts on low ferritin levels. If it helps, I'm Celiac, gluten free since March of this year. Slowly trying to treat all the vitamin deficiencies and hopefully get everything that was effected by my disease back to normal. 

 

Would love any feedback from anyone who has fixed their iron deficiency or is currently struggling as well.  Hopefully I've posted in the right forum! 

 

-Ami 

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Hi Ami,

When I was diagnosed with celiac disease about four years ago, the main symptom was exhaustion and after going through many tests, it turned out that I had extremely low ferritin levels. I almost had zero left in my system.

After being gluten free and taking an iron supplement, I was back to a low normal in about six months.

For me, the celiac disease caused the malabsorption of iron and that is why I became extremely anemic.

Good luck to you!!

Kevin.

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I did take Ferritin. My levels had been low( even though I was supplementing) before going gluten free.  I believe that the gluten free diet and digestive enzymes were a key for me to get them.  When the ferritin level came up, I could breath better.  A pressure I felt in my head went away. 

Dee

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Hi Ami,

I'm in the low ferritin club too. Mine was a lowly 2 at diagnosis and was only up to 9 at about 7 months post diagnosis. It was still that low even after taking 50 mg of iron bisglycinate daily(I think that's the same type of iron that is in Slow FE), but my CBC numbers are much better now. I was still have a lot of low iron symptoms and talked to my GI doc about it. He told me that a person will still likely have symptoms until their ferritin level reaches 50 - even though my labs normal referrence range starts at 10.

If you are on the low side of the range, that could explain why you are still having symptoms for sure. My doc also said it woulld probably take another year for me to get my ferritin number where it should be, so it seems like this isn't a deficiency that corrects itself very fast. More time and patience I guess :-)

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Thanks all! I guess it sounds like I just need to have some patience and faith that going gluten-free and taking supplements will help.  I'm not dangerously low, I don't think (Ferritin = 19) but the lightheaded symptoms scare me. I was reading about getting iron intravenously, but it sounds like I'm not at that point yet.  Husband and I are talking having babies, but I also don't want to hurt the baby in any way with low vitamin levels.  I'm only on day 3 of taking the supplements, and Rome wasn't built in three days....;)

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Iron intake is actually a triplicate kind of deal that involves the intestine that not just absorbs iron, but also stores it for up to three days in case it is needed, and the thyroid sending out something that tells the liver to produce something that allows iron to be absorbed. (Sorry. I don't remember the names of exactly what the thyroid and the liver produce in their roles.) 

So rather than just being a malabsorption issue from damage to the intestines themselves, it could also be an indication of thyroid disease or the liver not functioning ideally.

The liver is pretty heavily reliant on vitamins to do its job but I'm guessing that when they checked you for the iron deficiency, they checked the other vitamins and minerals as well.  But you can look up what foods to eat or avoid to keep the liver function up while you're getting your iron deficiency fixed.

Thyroid disease is common with Celiac so if you haven't had your hormone levels checked, I'd add it to the list of things to do in the future.

The three day storage thing is interesting because we likely do have days where we're not eating foods high in iron, but as long as we do so on a semi-regular basis, the body will work with us.

But I'm not mentioning the liver and thyroid to scare you. I just think this stuff about how the body works (or doesn't) is incredibly interesting.
 

Else, I'd just research side effects so that you can recognize symptoms if they happen. Iron absorbs better on an empty stomach but upsets the stomach so you're supposed to take it with just a little bit of food. Taking any supplement in the morning helps to avoid the sleep disturbances. And having too much iron is also bad so don't forget to follow up in six months to get tested again.

Lamb counts as red meat if you start looking for alternatives to beef to get more iron in your diet.

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Thanks all! I guess it sounds like I just need to have some patience and faith that going gluten-free and taking supplements will help.  I'm not dangerously low, I don't think (Ferritin = 19) but the lightheaded symptoms scare me. I was reading about getting iron intravenously, but it sounds like I'm not at that point yet.  Husband and I are talking having babies, but I also don't want to hurt the baby in any way with low vitamin levels.  I'm only on day 3 of taking the supplements, and Rome wasn't built in three days.... ;)

 

19 - that's high! :D - seriously, mine was down to 10. Even before I knew I had celiac disease I had better luck with GNC's Women's Iron Complete thank the SlowFE. The SlowFE gave me abdominal cramps, even though it's supposed to be gentler. The GNC stuff was way better. I tried about 4 brands before I settled on this one.

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Mine was at 3 in September - I took fairly strong supplements for six months and it's now remaining normal by itself which I am very pleased about! It's made such a difference to how I feel.

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That is good to hear, Katie.  Your levels were so low it was worrisome to me.

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Awww, Laura! :) Yes they're back to where they should be (and my boyfriend and family wish I'd slow down a bit now. Hehe). 

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Hi Ami,

I was low in ferritin for many years (4 was my lowest.) I took iron supplements (various types at various dosages) for years which slowly but successfully raised my ferritin levels, only to have the ferritin drop again when I cut back on the supplements. I cut back because I thought the iron was causing my chronic constipation, a known side effect of iron supplements. Now that I've been diagnosed with celiac (diagnosed Oct, 2013) it's entirely possible that the constipation is caused by that, who really knows. Anyway, my doctor told me enough of the supplements and arranged for me to have iron infusions. I was pretty nervous about these - I had read about nasty side effects. But I went ahead with it and was glad I did. The worst part was the technician finding a vein (mine are hard to find). I had no side effects. The infusions (I had 3) we're painless, and a subsequent blood test showed my ferritin level to be 600. (Yes, 600!!) I freaked out a little bit about that, but she said not to worry- the level will be high until it levels off. My last blood test, 3 months ago and 4 months after the infusions, was 180. I had a lot of energy and wasn't dragging at 2 pm everyday. At some point I'll get my ferritin tested again, but for now I feel good. Best of luck to you!

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Interesting. My ferritin level is 37. I've been complaining of exhaustion, hair loss and a few other things. All my labs including thyroid were normal so that was the end of that, but I know normal isn't necessarily optimal. First time they have ever checked my ferritin. Wondering now if supplementing a bit might be helpful for me.

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49 minutes ago, Stacy0w said:

Interesting. My ferritin level is 37. I've been complaining of exhaustion, hair loss and a few other things. All my labs including thyroid were normal so that was the end of that, but I know normal isn't necessarily optimal. First time they have ever checked my ferritin. Wondering now if supplementing a bit might be helpful for me.

A ferritin levels of 37 is still within range (see link).  Mine is around 55 (post menopausal)  but was at a 2 when I was diagnosed affecting my hemoglobin levels so that I was severely anemic.  At a ferritin level 55, my hemoglobin level is normal for me.  

https://www.mayoclinic.org/tests-procedures/ferritin-test/about/pac-20384928

When you went in to see your doctor, how was your DGP level?  Have you ruled out other autoimmune disorders that could be brewing?  Did the doctor even run a thyroid antibodies panel?  

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7 hours ago, cyclinglady said:

A ferritin levels of 37 is still within range (see link).  Mine is around 55 (post menopausal)  but was at a 2 when I was diagnosed affecting my hemoglobin levels so that I was severely anemic.  At a ferritin level 55, my hemoglobin level is normal for me.  

https://www.mayoclinic.org/tests-procedures/ferritin-test/about/pac-20384928

When you went in to see your doctor, how was your DGP level?  Have you ruled out other autoimmune disorders that could be brewing?  Did the doctor even run a thyroid antibodies panel?  

On the lab report it says if symptoms such as restless leg are present at a level below 50 supplements may help. I do get restless leg as well as several other things so I'm wondering if that is part of my problem. My gliadin iga ab is 21. One point from being negative. SO close. Last time it was 41 and two yrs prior it was over 100 so still improving but not quite there. My vit D is 45. B12 167. Thyroid despite asking for the full panel plus antibodies like I always do it appears they only ran the TSH (1.913) and T3 antibody which was negative.

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Well, it might be worth experimenting with an iron supplement if you have restless leg syndrome.  Keep in mind that too much iron is just as bad as too little.  

You might have recalled my history from last year (glutening, tooth infection, flu, and very elevated antibodies).  I developed chronic hives daily and some GERD along the way.  My antibodies (DGP IgA) were off the charts.  So were my thyroid antibodies (diagnosed 20 years ago).  Months and months later, I went on the Fasano diet.  No luck.  My DGP IgA was still highly elevated.  Finally agreed to a repeat endoscopy.  My small intestine was completely healed.   My GI went in pretty deep.  His strong scope could visually see my healthy villi (got a photo).  What the endoscopy caught was a gastric polyp.  Biopsies revealed Chronic Autoimmune Gastritis.  

I am sharing this because I thought (and my GI most likely) that I was somehow getting exposed to gluten.  It was driving me crazy.  Not all symptoms are due to celiac disease.  You might have another another illness brewing.

I can not do much about my AI Gastritis.  It ebbs and flows. I do keep a strict diet (modified AIP diet) and only dine out at dedicated gluten-free restaurants.  I do not consume any supplements though B-12 may be in my future as I might not be able to absorb it well eventually due to the Gastritis.  

I do think that autoimmune disorders are linked.  They seem appear in clusters.  When I went Gluten Free after my celiac disease diagnosis, my thyroid enlargement and nodules actually disappeared (too bad the organ was destroyed and will not recover).  

I hope you figure it out.  I just take one day at a time.  

 

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4 hours ago, Carterglid said:

I just got blood work done for the first time in 4 years. (I know. Bad me) My ferritin levels were high at 321. Two months ago, my acohol consumption was high for the most part. The past 2 months its been once or twice a week. Just trying to figure out if the increase is due to that or would it have gone down by now if that was the reason. trying to isolate the reason why its high. Thanks!

You should talk to your doctor about your high ferritin level which can be due to many things:

https://www.mayoclinic.org/tests-procedures/ferritin-test/about/pac-20384928

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On 10/23/2018 at 7:19 PM, Stacy0w said:

On the lab report it says if symptoms such as restless leg are present at a level below 50 supplements may help. I do get restless leg as well as several other things so I'm wondering if that is part of my problem. My gliadin iga ab is 21. One point from being negative. SO close. Last time it was 41 and two yrs prior it was over 100 so still improving but not quite there. My vit D is 45. B12 167. Thyroid despite asking for the full panel plus antibodies like I always do it appears they only ran the TSH (1.913) and T3 antibody which was negative.

http://www.progressivehealth.com/rls-b12.htm,

i am not familiar with this website, but it would be a starting place for you.  your Vit B12 level is abysmal.

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On 10/23/2018 at 6:19 PM, Stacy0w said:

On the lab report it says if symptoms such as restless leg are present at a level below 50 supplements may help

Stacy0w,

If you are having trouble with RLS try some Tyrosine.

Here is a good web page on all the research about restless leg syndrome.

http://www.rlcure.com/naturaldopamine.html

the information about tyrosine is  a the bottom of the page.

I hope this is helpful but it is not medical advice.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

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Just saw these comments. Started B12 and iron. Nothing crazy. I will look in to tyrosine. Thanks for trying to help me.

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Hi,

I am 19, a male, 6'2, with ferritin down at 21. I eat meat but my ferritin has been this low for around a year now (shown in old blood test). I was diagnosed with celiac in April, and have been fully gluten free for a solid 6 months. I've been on iron supplements for almost two months now. First let me say this has helped my extreme fatigue so so much! I also take a liquid multi vitamin, B 12, folate, and zinc. 

 

I have been experiencing hair loss in this past year, I think supplementing with iron has been helping stop the excessive shedding but I can't tell. My Dermatologist told me I most likely have chronic TE due to the stress on my body, but could be genetics. Was wondering if anybody else experienced hair loss as a symptom of celiac or low ferritin?

 

I'm a college student at Berkeley by the way, go Bears!

 

Thank you guys very much.

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ChargersFan,

Ferritin levels are not typically low in men.

Have you thought about having your doctor's check your Stomach Acid levels.

see this research about this topic entitled "Is achlorhydria a cause of iron deficiency anemia?"

https://www.ncbi.nlm.nih.gov/pubmed/25994564

Also see this thread where the IDA and Low Stomach Acid connection is discussed in more detail.

https://www.celiac.com/forums/topic/119240-diagnosed-with-ttg-iga-level-of-128-three-days-ago-trying-to-conceive-or-should-i-hold-off/

Try taking some Magnesium Glycinate 2/day with meals to see if your energy levels don't continue to improve.  We can't make energy without it.  As chlorophyll is to the plant Magnesium is too an animal.

Also see this Prousky research he studied this topic/connection of stress triggering low stomach acid. . . .which can lead to low Iron in time.

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

one of his case studies involved a student who had more severe digestion problems when stressed with finals.

quoting

"I do not think it was the holiday foods since in previous years I never experienced such problems. Needless to say, . . .. I returned to my supplement regimen and normal eating habits, and my abdominal pain, diarrhea, and blood in the stools went away. This time, however, my bloating did not remain in control as much as it had before. This might have been due to the tremendous stress of finals, which continued for one month."

school can be stressful, . .. too stressful at times.

Your Celiac symptom's might be worse from the stress of being a student.

https://www.celiac.com/articles.html/celiac-disease-gluten-intolerance-research/stress-common-before-celiac-diagnosis-r2930/

A quick and dirty way to test your stomach acid levels is with a baking soda test?

see this article about 5 easy way to test your stomach acid levels.

https://drjockers.com/5-ways-test-stomach-acid-levels/

I hope this is helpful but not medical advice.

“Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7

Posterboy by the Grace of God,

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15 hours ago, ChargersFan said:

Hi,

I am 19, a male, 6'2, with ferritin down at 21. I eat meat but my ferritin has been this low for around a year now (shown in old blood test). I was diagnosed with celiac in April, and have been fully gluten free for a solid 6 months. I've been on iron supplements for almost two months now. First let me say this has helped my extreme fatigue so so much! I also take a liquid multi vitamin, B 12, folate, and zinc. 

 

I have been experiencing hair loss in this past year, I think supplementing with iron has been helping stop the excessive shedding but I can't tell. My Dermatologist told me I most likely have chronic TE due to the stress on my body, but could be genetics. Was wondering if anybody else experienced hair loss as a symptom of celiac or low ferritin?

 

I'm a college student at Berkeley by the way, go Bears!

 

Thank you guys very much.

There you have it.  UC Berkeley.  

My own kid is experiencing hair loss (lots of shedding) and it does cycle.  She is applying to universities right now (Berkley is one of them).   She is under so much stress (high achiever) so we are not sure if this is due to autoimmune or just normal stress.  

Get your ferritin rechecked and get a CBC.    My anemia improved within a few months of going gluten free and I did take an iron supplement for a short time then I started absorbing iron from my food.  (You can take too much ferritin.) You might have your GI recheck your antibodies (DGP or TTG) to see if they are trending downward. It can help determine if you are getting gluten into your diet.  You are still in the healing stage.  Give it more time and rest during the winter break.

This is about celiac disease follow-up testing:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

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I too have experienced low ferritin for the last 5 years. When I was diagnosed with celiac disease my ferritin level was 17 but a few years earlier it hit a low of 10. Doctors shrugged it off even after retesting 2 times with the same results. The Doc would ask me "are you experiencing any bleeding anywhere?" I switched Doctors and now I am on a GFD. After four months on the diet I was able to get my ferritin to 47. I do not take any supplements. I realize I am in the normal range but for male's I think I need it higher. Have faith - GFD really works. I hope to see an increase in my next blood test in a few months. I agree with cyclinglady - give it time.

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ChargersFan,

This is in response to your PM message.

I dont' think my PM account is working right now.

No matter.  I wouldn't say anything to you I couldn't/wouldn't say in the forum.

I don't know specifically about your hair loss. ... though low iron can be a common issue in hair loss.

Think "chunks of hair" though and not thinning hair.

I do know they are getting close to cracking the "male pattern" baldness.

Alopecia have miracously regrew hair with drugs not approved yet for hair loss.

see this article on it entitled "Experimental drug reverses hair loss and skin damage linked to fatty diet, shows new study in mice"

https://www.sciencedaily.com/releases/2018/07/180730090152.htm

and this latest discovery of a new ezcema drug that regrew hair.

https://newatlas.com/hair-growth-balding-eczema-drug-alopecia/56742/

as for the Iron take you a B-complex 2/day or with each  meal for a couple months or an entire semester to see if doesn't slow down the hair thinning.

Biotin is known to help hair and the B-complex's work synergistically to help your stress levels.

If you have a stress problem you have B-Vitamin problem.

See this study about low vitamin status in celiac's entitled "Evidence of poor vitamin status in celiac patients on a gluten‐free diet for 10 years"

https://onlinelibrary.wiley.com/doi/full/10.1046/j.1365-2036.2002.01283.x?inf_contact_key=ea0f2a766da007cd64921c490e0f3144800b47a6bffe30d3db72e448ff52727e&

they noted in their conclusion quoting

"Conclusions : Half of the adult celiac patients carefully treated with a gluten‐free diet for several years showed signs of a poor vitamin status. This may have clinical implications considering the linkage between vitamin deficiency, elevated total plasma homocysteine levels and cardiovascular disease. The results may suggest that, when following up adults with celiac disease, the vitamin status should be reviewed."

and taking a B-complex will help your  nutrition status that could alone help stop the thinning . .. but not bring the lost hair back. .. .unless some of these new break through's become readily available soon!

Sorry I couldn't be of more help.

Take the B-complex until you begin too burp out loud even when drinking water and not just with soda's(though sodas will make this effect more pronounced).  It is a sign you have gotten enough of your B-complex to begin helping your fight off your student stress which is little too high right now.

Once you begin burping instead of being bloated your Iron levels should improve because your stomach acid is strong enough again too now again naturally able absorb your Iron from your food again!

I hope this is helpful but it is not medical advice.

As always "Consider what I say; and the Lord give thee understanding in all things."

2 Timothy 2:7

Good luck on your continued journey.  I was you once.  I remember how school wore me out!  But the good new is with some B-Vitamins you can help manage that stress you are now under!

B-Vitamins are water soluble and only stay in the body a maximum of approx. 12 hours so frequency is more important than amount.

Go back and read the Prousky research I quoted he talked about the role stress plays in developing low or NO stomach acid.   I quoted the full citation so you can read it in detail and not the summary form.

Provided here again for your convenience so you won't have to scroll back up in the thread again.

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

Again I hope this is helpful. . ... but it is not medical advice.

Posterboy by the Grace of God,

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On 12/3/2018 at 4:19 PM, Posterboy said:

ChargersFan,

This is in response to your PM message.

I dont' think my PM account is working right now.

No matter.  I wouldn't say anything to you I couldn't/wouldn't say in the forum.

I don't know specifically about your hair loss. ... though low iron can be a common issue in hair loss.

Think "chunks of hair" though and not thinning hair.

I do know they are getting close to cracking the "male pattern" baldness.

Alopecia have miracously regrew hair with drugs not approved yet for hair loss.

see this article on it entitled "Experimental drug reverses hair loss and skin damage linked to fatty diet, shows new study in mice"

https://www.sciencedaily.com/releases/2018/07/180730090152.htm

and this latest discovery of a new ezcema drug that regrew hair.

https://newatlas.com/hair-growth-balding-eczema-drug-alopecia/56742/

as for the Iron take you a B-complex 2/day or with each  meal for a couple months or an entire semester to see if doesn't slow down the hair thinning.

Biotin is known to help hair and the B-complex's work synergistically to help your stress levels.

If you have a stress problem you have B-Vitamin problem.

See this study about low vitamin status in celiac's entitled "Evidence of poor vitamin status in celiac patients on a gluten‐free diet for 10 years"

https://onlinelibrary.wiley.com/doi/full/10.1046/j.1365-2036.2002.01283.x?inf_contact_key=ea0f2a766da007cd64921c490e0f3144800b47a6bffe30d3db72e448ff52727e&

they noted in their conclusion quoting

"Conclusions : Half of the adult celiac patients carefully treated with a gluten‐free diet for several years showed signs of a poor vitamin status. This may have clinical implications considering the linkage between vitamin deficiency, elevated total plasma homocysteine levels and cardiovascular disease. The results may suggest that, when following up adults with celiac disease, the vitamin status should be reviewed."

and taking a B-complex will help your  nutrition status that could alone help stop the thinning . .. but not bring the lost hair back. .. .unless some of these new break through's become readily available soon!

Sorry I couldn't be of more help.

Take the B-complex until you begin too burp out loud even when drinking water and not just with soda's(though sodas will make this effect more pronounced).  It is a sign you have gotten enough of your B-complex to begin helping your fight off your student stress which is little too high right now.

Once you begin burping instead of being bloated your Iron levels should improve because your stomach acid is strong enough again too now again naturally able absorb your Iron from your food again!

I hope this is helpful but it is not medical advice.

As always "Consider what I say; and the Lord give thee understanding in all things."

2 Timothy 2:7

Good luck on your continued journey.  I was you once.  I remember how school wore me out!  But the good new is with some B-Vitamins you can help manage that stress you are now under!

B-Vitamins are water soluble and only stay in the body a maximum of approx. 12 hours so frequency is more important than amount.

Go back and read the Prousky research I quoted he talked about the role stress plays in developing low or NO stomach acid.   I quoted the full citation so you can read it in detail and not the summary form.

Provided here again for your convenience so you won't have to scroll back up in the thread again.

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

Again I hope this is helpful. . ... but it is not medical advice.

Posterboy by the Grace of God,

Posterboy,

 

Thank you dearly for you invested response. I am very grateful to have found your support.

 

I will take a look at these articles now; love the feeling of being in a new direction towards feeling better!

 

And thank you for all the hope regarding hair loss.

 

My best to you,

H

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