A few months after being diagnosed with CKD, I noticed my hair was falling out (as well as becoming more straight, instead of curly/wavy as it had been). My Neph said it was typical and that hormones in the kidney determine texture (i.e. straight, curly, etc.). I talked to the Neph about taking Biotin, a vitamin that can help stop the hair from falling out. [The doctor said Biotin rarely worked as well as patients hoped.]
Now, 5 months post -transplant, my hair is falling out again. My hair is everywhere! When I shower, it is all twisted in my fingers! It is very annoying
I didn't notice this much hair falling out until I was put on Sensipar/cinacalcet again (took it for years for parathyroid issues while on dialysis, but now post-transplant was prescribed it for high calcium).
Anyone else notice lots of hair loss months after a transplant? I wasn't losing any hair for the first 4 months!!
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TaffyTwoshoes27
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Hi Mhusband27 - Yes!!! I experienced hair loss post transplant…much more early on than I do now. I’m 8 years post tx. I attributed the hair loss to the tacrolimus I was on but it could have been a combination of induction meds and the surgery and/or the tac. Note that major surgery itself can cause hair loss and it typically takes about 3-6 months for this to occur (so I have heard). I found the hair loss improved as my tac dose was lowered and the other post-tx meds were dropped. I too was on sensipar until my parathyroid surgery. I didn’t attribute the sensipar to hair my hair loss though, but I tend to blame tac on everything :-). I took biotin for a bit (I think it did help and was approved by my team) but it upset my stomach, so I stopped. Best of luck to you!
Thanks! They were reducing my Tac from 14 a day (just after transplant) to 4 a day. Last week, it was bumped up to 6 a day (3 twice a day).They are just about to drop all the 6-month meds: like Mepron (YUCK!!) and some others.
I’ve always been suspicious about taking a lot of pills — especially supplements (b/c they are not regulated by FDA). I may try the Biotin.
Have you noticed how many Hair Loss Commercials and Products are on TV these days? New drugs, weaves, etc. Maybe it is age-related as well as transplant?
Oh yes, the yellow paint aka mepron. When my tac dose was decreased I noticed a reduction in hair thinning. I hope you do the same. I was switched to Envarsus after a couple of years…it is a once a day extended release version of tac with supposedly less side effects. It was new when I was switched to it. Although I don’t take it any longer, I know others on this site do.
What was your talc reduced to? Was there fallout on Envarous? What do you take now instead of Envarous? Thanks! I experienced hair loss immediately after starting dialysis, and still on month 3 after transplant, I'm scared I will go bald. 😪
Hi Shamara - Early after surgery my tacrolimus trough level was around 8-9. After about 6 mos, I was kept at a trough level of 4-6 when taking prograf and then kept at the same level when on Envarsus. I had less hair loss on Envarsus. I’m not sure if this was the difference in the med or the fact that I was further out from my surgery date. It has definitely improved. Note that I also took MMF with these meds. I now take sirolimus, belatacept infusion and prednisone, which have their unique set of side effects for me (anemia, low potassium, mouth sores, high cholesterol). I hope your hair loss improves quickly, and I wish you the best.
Yes , lost loads at 6 months … it took 18 months to return as the meds were slowly reduced. Don’t despair.I take Biotin but I think your nephrologist is right it doesn’t have much effect .
Good luck it’s very early days so go with the changes your body is adjusting
I lost hair in CKD, but it stopped. 2.5 weeks ago, I had the 4th Covid shot. Maybe that was it? Anyway, it's coming out worse than the first time and I hope it stops soon!!
I get that Evusheld monoclonal antibody injection this Friday. I hope it doesn't make it worse!!
I did, on Thurs June 14, but not much feedback. I believe the NP offered to change my Cellcept, but she never implied it could be connected to the hair loss and I haven’t seen it mentioned in all the articles I’ve read!
That just started happening to me around a month ago! I didn’t have hair loss before transplant but I did after. I knew it could be a side-effect of the prograf so I started taking biotin months before I even had surgery. But a month ago (4 months post-op) over the course of a week, I was losing probably 4x the amount I used to lose. My doctor doubled my dose of biotin but I don’t know if that did anything. I’m slowly starting to lose less and less now but for a few weeks there I was thinking I was gonna end up bald. I think mine was a delayed reaction from the stress of the transplant. Stress can have crazy effects on the body.
Hair loss happens when follicles died from starvation or cellular death. It can take months until the actual hair strands came out and fell from the head though.
The surgery and heavy meds used during it are major stress factors, plus the high doses of meds (immunosuppressants) in the first year can damage the healthy cells for hair follicles and surrounding tissues responsible for healthy blood supply. That being said, when your body recovered, hair will grow back. Try to be creative with accessories like nice hats or scarf during this temporary period and be patient.
I can't add anything about the meds, because I am less than a month post transplant.
Consider if you are eating enough protein, or if your diet has changed. I was losing my hair at one point (between 200 and 300 strands a day), and my doc asked me what I ate the day before. I don't have an appetite, usually, so it turned out I was only eating about 15 to 30 grams of protein a day. I upped it to 45g/day and my hair stopped falling out. Good luck!
Thanks for the input. My old Neph (before transplant) told me to take L-Carnitine (500 mg) and it would help with muscle retention and protein. I stopped taking it after transplant b/c they require that you ask them about ANY supplements you want to take. Maybe that's the reason (4-5 months post-transplant?). Who knows?
I don’t know if it helped or not when in CKD and on dialysis. I didn’t gain my lost muscle mass back that the CKD took away…ever.The transplant doctors pretty much take a patient off all their vitamin and OTC meds post transplant. I have added one or two (like melatonin) but I ask my Transplant Organizer before I introduce anything new.
I haven’t asked about the L-carnitine yet. I should ask since I have a big bottle left over from dialysis days!
BTW: I am on a pretty high dosage of Xanax (4 mg/day) for anxiety and, especially, sleep. (New doctors I see, like PCPs, maybe a new psychologist or psychiatrist, will ALWAYS try to get me off the Xanax altogether).
The doctors at the hospital stopped that Xanax dosage and gave me only 1.5 a day. I didn’t sleep for five days. Finally, I realized I brought my Xanax & Melatonin with me to the hospital and was able to “sneak” 1 more mg of Xanax on the third or 4th day. Just beware that the doctors at the hospital will remove certain benzoes and other meds post-transplant.
Thanks for those details💖. Yeah, I have had to sneak meds into my purse before going to the hospital too 😁. Oh yes, they are always trying to take things away!
UPDATE:. I went to a new PCP the other day. Too big a practice (lots of overhead). And, of course, I just had my Transplant labs at LabCorp, but this doctor found MORE things he could test for so he ordered his staff to draw 3 more vials of blood (draws are sent to LabCorp too. I rec'd the Transplant Labs on Monday, 6/27, and have STILL not rec'd the lab results from the PCP).The doctor was nice enough, had high marks on Healthgrades.com, but has a huge staff and the office is dysfunctional. I ASKED the doctor about my HAIR LOSS, and told him I read it is probably the result of Tacrolimus. His only advice: 'Yea, it probably is'. No suggestions or input.I hate going to doctors that just try to up their billable time/claim and then the patient can never get an answer to any question!
The Medication List to new PCP was wrong and I couldn't get anyone at the practice to help me fix it on the portal (of course, I didn't have access to erase or add new medications).
It was suggested to me thru portal msg that I talk to the doctor about it at my next office visit, which is 4 months away. I think I'll look for another PCP.
Unfortunately the hair loss resulting from medications or surgery itself will take time to recover. The shampoo and supplement are only psychologically helpful, or helping to keep follicles healthy so new growth comes in the next cycle. Not sure what more the doctor could tell you. It is however extremely important to find and stay with one primary care physician you like though, because other medical comorbidities will not be considered you nephrologist's responsibility, and you do need someone who knows your history well to manage any new issues as they surface. A solid relationship with your healthcare provider will come a long way.
When I was first diagnosed with CKD in 2012, I saw a Nephrologist who is probably the smartest doctor I've ever known. He told me that many nephrologists and MD's generally do not get enough education on kidneys and their function and how much they contribute to many areas of the body. I can detect that this new PCP is in that category. I would just like an internist that is intelligent enough to know something about Nephrology and dialysis and Transplant and take that into consideration when he reviews labs and so forth. This new PCP saw that my alkaline phosphatase was high and now wants me to have a liver test at a hospital. That alkaline phosphatase can be high because of bone loss, vitamin D issues as well as the liver. I'm not saying I don't want to go have a test in my liver but I just had a complete check up to stay on the transplant wait list in September 2021 and I believe the hospital did do a CT scan of my abdomen. I just want a doctor that considers all of my health issues that may be related to the kidney disease, the transplant, years of being on PD and lab numbers that can be the result of those kidney-related issues.
One of the reasons doctors are reducing benzo on patients is that new study revealed that patients taking benzo are at significantly higher risk of developing early dementia. This plus the addictive properties of benzo make it a drug not safe for long term use, for most.
You are correct. I know this, but I have anxiety, PTSD, sleep and panic attack issues. I am not against trying to work to reduce the dosage and eventually get off of it, but the psychiatrist I had (he just retired) been seeing is the kind who pretty much talks to his patients 10 minutes and dispenses meds. Perhaps his replacement will work with me to get off of them.Thanks for the input.
I am sorry you are suffering these symptoms and am glad you have something that helps you for now. Hopefully there will be another strategy just as effective for you soon!
If it is not medication induced hair loss, it could be low protein consumption.
After a lot of searching I finally figured out that typically after major abdominal surgery, it's recommended you eat 1 gram of protein for every kg you weigh (g/kg). For kidney transplant in UK, the NHS recommends 1.2-1.3 G/kg daily. This is to promote the healing of the tissues, and they speculate this may reduce or stop hairloss, but who knows? Vitamin C (like eating oranges, not taking pills, also helps rebuild collogen and tissues.
My hair started falling out at one point prior to dialysis, because I was only eating 30-40 g of protein/day and I had albuminurea (losing 15g/day in urine). That means this 63kg (140 lb) gal I was only using 15 to 20g of protein/day.
My nephrologist was shocked I was eating so little and ordered me to start eating 60g of high quality protein/day, and then my hair stopped falling out after about 3 weeks and my periods started again within a couple of months. The doc said the body uses protein in the order it deems most important, and hair is one of the least important functions protein serves if you are deficient. Good luck!
By the way, he called high-quality proteins (1) meat (incuding chicken and fish), (2) eggs, (3) soy, (4) whey protein powder, and (5) greek yogurt high-quality protein. He said to stay away from creatine powder, because it is hard on the kidneys.
I learned from research on the net and some YouTube videos that this phenomenon is not unusual. Most of what I read or reviewed by Transplant patients (mostly kidney) was that at 5 month post-transplant, patients started noticing an excessive amount of hair loss, and they were all told it is a side effect of the Tacrolimus.I didn’t get any information about why the “5 month marker” caused more noticeability (some patients say they experienced it at 2 months post-transplant).
I read there is some tacrolimus oils that I got the impression could stave off the loss (like you apply it to your scalp) and there are also Biotin and Niacin shampoos and conditioners.
As I was told by my Neph, taking Biotin tablets rarely helped, and the person that created the YouTube video that bought the Biotin shampoo & conditioner never reported back whether it worked or not.
It is very confusing and it is telling (to me) that doctors or NP’s just ignore the inquiry by patients because there is no cure to stop that loss. Some patients reported (in Comments section in YouTube) that 1 year post-transplant they were still experiencing excessive hair loss. One female patient cut her long hair shorter to help alleviate the weight her long hair was putting on the root and had her stylist cut her hair in layers to give it more volume.
My sister bought me some liquid Nioxin shampoo & conditioner that is supposed to help, but I haven’t used it long enough to see any improvement yet.
Sort of makes one wonder whether they would prefer to get a kidney or go bald! I guess I’ll buy a wig if it gets to going bald!
I've read on many blogs that most transplant doctors dismiss this and other issues they don't think are a big deal-to *them. They think having the kidney should be enough and we should be able to go through the side effects/toughen up or something. "Compassionate care" is something I read about, but the actual act is hit or miss. Some patients just get lucky.
Another platform I subscribe to had patients calling a woman, "Selfish" for even asking the question about the hair loss!? I was stunned! I'm glad this platform doesn't seem to gang up on people, that I've seen. I'm saving this post and will add in any new information I find that will help anyone struggling. I hope it stops for you ASAP!
Thanks Shamara. They call the hair loss due to the tacrolimus “Alopecia Totalis” and some of the articles I read indicated that a REDUCTION in the medication Tacrolimus (not really a viable option for transplantees) can stop or slow down the hair loss (which I am suspicious of since my excessive hair loss didn’t start UNTIL my Tacrolimus was reduced at the 5th month post-transplant. Now, I take 7 tablets a day. One article even suggested that stopping the Tacrolimus altogether may help to grow hair back! How do we STOP taking a life-sustaining medication?I don’t understand why the Tacrolimus jumps around so much! I went from 14/day after surgery and my lowest dosage a couple months was only 4 tablets per day. Then, the Tacrolimus lab results fell below 6-8 level my hospital requires.
One article I read indicated that physicians were not sure of what medication was causing the hair loss. They did blind studies and narrowed it down to Tacrolimus.
Cures: they talk about balanced diets; addition of Omega 3 & 6 fatty acids; 400 mg of Pumpkin Seed oil, etc.
Blood thinners (like Coumadin) can cause hair loss.
Drugs used to lower cholesterol have been connected to hair loss as well.
The list of drugs for certain conditions (i.e., depression, ace inhibitors, gout, blah, blah, blah) were listed as culprits of hair loss. I guess “being a human and getting out of bed in the morning” wasn’t listed as a hair loss culprit!
And, to add insult to injury, one article said that doctors get “snippy” when a patient complains about hair loss after receiving an organ as if we should simply feel lucky for getting the transplant!
I’m grateful for the kidney, but something out there — prescription or OTC — shld be able to stop the excessive loss!
Thanks for sharing your experience BabyTee. Did the increased protein fully solve the issue? How long did it take after eating more protein did you see a noticeable difference or full recovery? Cheers! 😊
Shamara,Keep in mind this was before I even started dialysis, so this was NOT medication induced.
It stopped falling out within a week, and within a few months, it seemed to get better. It was definitely noticeable within 6 months, so I would say it started growing within a month. Then my hair thinned again the longer I was on dialysis, because the PD squashed my guts and intestines, and I just couldn't eat enough. Also, PD depletes your body of creatine and albumin.
Now I am working to make sure I get a minimum of 60 grams of protein a day, but really, to get to 1.2 g/kg, I (63 kg) should be eating at least 75 grams/day.
Update - Today my doc said NO MORE THAN 1.5 g of protein per kg of body weight. He said if I go above that every day it will be too much for my new kidney.
At least should be high quality protein. You can try a search for that online, but it is basically animal products or soy products.
Thanks for your advice. My Albumin levels have been within range but on the lower side, and I admit I don’t qualify for the daily amounts of protein you identified. We were told by the Renal Dietician just before being released from the Transplant Hospital to bump up our protein intake to help with healing, but it is strange that I am 5 months post-surgery and NOW my hair is falling out in very noticeable amounts — which did not happen just after surgery. About a month ago I had my 4th Covid booster, but I think the hair loss started about 6 weeks ago.I’ll work on protein! Thanks!
Ask your team about the amounts for you. I am 5'2" tall and have a BMI of 24-26, post-transplant so I can use my weight, but If I were to weigh 300 lbs (136kg), I am guessing the calculation would not be based on that weight.
The doc and renal dietician told me to eat a lot of protein, but when I asked how much, they didn't give me an answer. When I found that info from the NHS, and asked them about the 1.2-1.3 g/kg, and they responded to that more specific question, and provided that upper limit, as well.
If your body isn't healing from surgery, and if you aren't exercising a lot, you might not need that much protein.
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