Thinning hair

[Camppy3]

Does anyone have tips for thinning hair, what do you do to help it grow back?

[Ziggydoodah]

When I was first diagnosed I was put on Losartan and high doses of steroids. I could just about deal with everything else thrown at me but my hair thinning really brought me to the point of serious depression. I asked my consultant about it and he just said..Wear a hat!! It got to the point I was photographing my scalp every couple if days just to see how bad it was. One photo showed my hair was thinning it was like a comb over. I spent that day crying my eyes out and saying I was never going out in public. I researched everything. I got collagen powder but had to stop due to the animal protein. I tried peppermint shampoo organic. I tried peppermint and rosemary oils. I tried biotin. I then googled Losartan as I had really bad joint pain. Turns out it was probably the Losartan due to the amount if people experiencing hair loss. I stopped it. With in 2 weeks I had no joint pain. Handfuls of hair stopped coming out. Now I am on haemodialysis. The first thing they discovered was my haemoglobin etc was at the levels where they thought I would need a blood transfusion. Even though I was getting blood test every three weeks, no-one picked up on this. How is my hair now? Back to be8ng thick. If I put it in a ponytail I can feel the thickness. I am very wary of BP medication now. I have been on Irbestartan ..sorry for spelling!! It has been great. No side effects and my blood pressure has never been so good. Look at your medications. Get your blood levels etc and then do research. I understand how worrying it can be and I look back sometimes at those photographs and realise how far I have come. I was in a very dark place at stage 3..mentally and physically. Haemodialysis has not been easy but nothing as bad as those awful days. I really hope you get a solution. Keep me updated xx

[Camppy3 in reply to Ziggydoodah]

I was on Tacrolimus and Cellcept at first after my transplant. Then approx. 3 mo. After started seeing hair in comb and shower. Taking Biotin and trying shampoo and conditioner at Sally's. Stopped falling out and grew back in places. Temples are the slowest to grow back. My hair is still really airy feeling after I wash and dry it. Pull it back in a ponytail because not sure what to do with it. Frustrating.

[Porter20 in reply to Ziggydoodah]

I use Biotin spray as an detangler and leave it in and have read some take it as a vitamin as well.

[Camppy3 in reply to Porter20]

Where do you get the Biotin Spray?

[realpotatoes]

I'm going through a similar thing.

I was on PD and HBPs for 4 years with no issues. I then had a double nephrectomy before my Transplant and my hair started falling about 1-2 months later. I was told that it was caused by poor nutrition (very low albumin levels). I was not taking any meds after the procedure, just going to Hemo.

I received my Transplant and my hair stopped falling. However, it started falling and thinning again two months post transplant. I was upset when I could see my scalp. Working with my team, the culprits were apparently fluconazole (anti-fungal) and Metoprolol (HBP med).

The hair is supposed to grow back several months after the drugs are stopped. I worked with my team and found an HBP replacement that may work for me. They are also testing to taper down and stop my fluconazole. In my case, the risk to stop the anti-fungal is low because I live in a Metro area far away from any Valley Fever area.

I did have some folks in my care-team that downplayed the situation and some that made it a bit difficult to get to the doctors. However, you are your best advocate.

Consider that everyone is different, so talking to your team to help find the culprit and to develop a plan would be advisable.

[Camppy3 in reply to realpotatoes]

Yes, you are right it is hard to get answers. I have a transplant coordinator but sometimes I feel like she thinks I am over reacting. It is hard to even talk to a team. I will have to keep trying.

[LeslieK]

Hey. My hair is also thinning out or falling out when I wash it especially. I’m 3 months post transplant and this started about a month and a half ago. Maybe someone will reply with a real recommendation. I take tacrolimus and obviously will forever so I blame that.

[Camppy3 in reply to LeslieK]

I was told that Tacrolimus will do it.

[LeslieK in reply to Camppy3]

It is the Tacrolimus. That shit has so many side effects.

[BabyTee]

Official answer - ask your dermatologist.

1 g protein / kg body weight post-surgery. If you don't eat enough protein, your hair will fall out and your nails will become thin. Part of my protein was collogen protein smoothies and I took Healtheory Collogen pills. 5/day for the first 6 months. Now at 14 months, I take 1/day. If I wean myself off too fast, my hair starts falling out or stops growing again. It still hasn't fully recovered, and I am now tempted by Vegamour.

My hair loss was the worst when my tacrolimus levels were high enough for me to have blurry vision and hand tremors. They lowered my blood levels earlier because I asked for a reduced schedule, because I type for a living.

Meanwhile, I got a topper which is like a mini wig to put on top of your hair. I bought a few so I could cover my enlarged hair part and I could wear it outside and not worry about the scalp near my hair part burning. It's also cooler than a full wig.

I also was happier when I gently used a Wet brush to brush out my hair before my shower. That way it reduced what fell out in the shower.

Sorry about your hair loss.

[Camppy3 in reply to BabyTee]

Tjanks

[6821green]

Hello, I am 2 years post-transplant. My hair began thinning and falling out 4 months after surgery. I tried Biotin supplements for a while, with no improvement. My transplant team was of no help. (they just suggested I try Rogaine.)

I researched some shampoo /conditioner combos and ordered Routine Wellness products. I use according to directions and only shampoo twice weekly. I avoid blow-drying and any type of curling irons, electric rollers, etc..

Be very careful when combing your wet hair. I also purchased a very wide toothed comb and wet-dry brush. You may find the shampoo items to be a bit pricey, but I am still using the original bottles purchased over a year ago.

I take a Vitamin B complex, Vitamin D3, and Magnesium for supplements. The information from BabyTee is interesting and helpful. I do consume quite a bit of protein. The collogen therapy sounds promising, as well.

My hair has grown thicker with time, but has not reached the sameness prior to surgery. However, it was helpful to surrender my hair loss anxieties and focus on how grateful I was to receive this glorious gift of life. It also helps to think about what my living donor did for me. Losing a bit of hair, although stressful at first, seems such a small thing to me....I am alive. I do not live in fear. I am strong again. I have purpose, motivation, and drive. After suffering with CKD for 19 years, I give thanks for each and every day. Transplant is not a cure. My nephrologist told me early on, that I would just be trading one set of health issues for another. Such a truer statement ever made.

[LeslieK in reply to 6821green]

Great post thank you

[Camppy3 in reply to 6821green]

Thanks

[BabyTee in reply to 6821green]

Great tip about gently brushing your hair. I gently comb my hair with a large-toothed comb in the shower when there is conditioner in it, and then rinse. My theory is I don't actually pull hair out that way. Who knows if it is correct?

[6821green in reply to BabyTee]

That's a great idea! I will add that to my routine. Thank you for sharing. Hope you see improvement soon. My thinning and loss did slow down when my Tacrolimus dosage finally settled.