Tamoxifen and Hair loss?

lisey · September 2017

(UPDATE for those who dont' want to read all 4 pages. After countless tries to figure out what was going on, I settled on this. I got dermatitis from a bad massage therapy session on my scalp AND my hair is thinning due to tamoxifen. I started using the irestore laser helmet and both issues disappeared (my hair looked great after 6 months of use). I returned the irestore helmet to test to see if the problems returned, and after 1 month, they came back and hair was falling out again. I am buying the irestore helmet again and this time never returning it. It worked for me with my hair loss / scalp itching!)

I know there is a dead thread from 2010 regarding this, but I'm wondering if there has been any further infomation on this?

I'm 42, I've been taking Tamoxifen for over a year now and so far, no side effects really, just the occassional hot flash. Suddenly about 3 weeks ago, my scalp just started itching. The itchiness lead me to notice I've been scratching it and suddenly my hair has changed texture and has gotten noticably thinner. Now let me say I had BRAVE hair. Tons and Tons of red curls that was coarse and heavy. I loved my hair... If I tried to use a ponytail it was a very thick one.

Suddenly my hair is limp and if I try to put it in a ponytail, I would say the radius is about half what it used to be. And my damn head is still itchy.

I went to a salon yesterday. 1) I do NOT have any flakes. 2) I do not have any redness, or irritation on my scalp per my stylist. 3) she detected nothing at all to warrant all this itching.

I want my freaking hair back. I can lose the boobs - no problem... but the hair? I need it back. I think I'd do better if this was chemo because at least you know the cause and that it will end. Why is my hair falling out? ugh.

Steps I'm taking: 1) I've been taking 10,000 mcg Biotin since I noticed for about 3 weeks. 2) I just bought Nioxin level 4 for thinning hair. 3) I just ordered Rogaine for Women 5%. 4) I have a call in to my doctor to get some blood work and see if there's a blood issue. (low iron, low thyriod etc.)... I've never had issues before with my hair.

If the Tamoxifen suddenly after 1 year is making my hair fall out and change... I may stop taking it if I can't find a solution. The itching is driving me crazy.

Lastly, the only other thing I changed up the last month was I had a massage therapist work on me and she'd massage my scalp with some lotion of hers... Maybe it changed due to that? Anybody had something like that?

I need to solve this mystery and I figured I'd keep y'all posted on my results and what I discover. My hair is a huge part of my identity so I've been depressed in a way I've never experienced before. Yikes.

lisey · September 2017

I'm documenting my journey on this scalp itching / hair loss train.. You aren't supposed to take Benadryl if you take Tamoxifen, but the itching got too much this am. I took 2 benadryl pills and also a shower using the new Nioxin 4 scalp treatment I bought. My head is no longer itching! This is a baby step, but shows something was going on. I'll report back as I learn more. (waiting on my Rogaine to show up as well).

If it is the Tamoxifen, it's odd it would start a year after I began taking it.

Lula73 · September 2017

I had hair loss and severe itching/burning/stinging on my back, shoulders and décolletage areas. Sometimes on my neck into the hairline too. It felt like I had a wicked yeast infection in those areas-an itch you can't get away from or satisfy. As Benadryl interferes with tamoxifen, it was relieved with Zyrtec, Claritin, or Allegra (whichever was on sale) and any breakthrough itching was treated with benzocaine 20% cream (in the US, lanacane cream used to be the go to for this, however, now the only product in the US that has that active ingredient in that quantity is vagisil cream and it works just as well).Every morning when I'd wash my hair I'd fill the drain cover up with lost hair. Had to stop tamoxifen at 2.5 months in due to blood clots in the lungs and a DVT. Hair loss is all but non-existent now.

lisey · September 2017

Hi Lula, I'll definitely go buy some Zyrtec and see if that helps. I'm really reluctant to stop taking Tamoxifen, but if the itching doesn't stop I'll have to. My doctor emailed me this:

"I am so sorry this is happening. I have ordered those blood tests plus a couple of others. Yes, this can also be a side effect of tamoxifen...."

So I'll go get the blood tests and return and report.

gb2115 · September 2017

I had been thinking of posting a similar post, Lisey. I am 6 or so months into taking Tamoxifen, and noticed hair loss the last month or so. I thought it was in my head (no pun intended), until my husband brought up how he has to clean our vacuum brushes weekly now to remove the hair. :-(

I have a lot of hair (very thin and fine hair), so I can't tell by looking in the mirror (yet anyway), but when I run my hand through my hair quite a bit comes off on my hand. I don't have any itching along with it.

I might ask the oncologist about it when I see her next, but not sure there's a whole lot she can do. I'd rather not get cancer than have my hair, so c'est la vie.

lisey · September 2017

So my oncologist wants me to take a 2 week break from Tamoxifen to see if the itching stops. It's a scary thought to stop for 2 weeks, but I'll try it. The even scarier thought is what to do if it does stop - which could mean it was the tamoxifen, what then? Not really feeling good about removing my ovaries and going to an AI - those probably cause hair loss and itching as well... Ugh.. choices choices. The rogaine should come today and I'm anxious to try it.

Lula73 · September 2017

if it is the tamoxifen causing the itch, you have a few options: 1) try a different brand of tamoxifen. Different manufacturers use different fillers and it could be a filler that's causing the itch. By the same token it could be the tamoxifen active ingredient or even the result of the lack of estrogen to the cells that is causing the itch. That brings us to options 2) discontinue tamoxifen and do nothing or 3) discontinue tamoxifen and either have ovaries removed or go on ovary suppression meds so you can start an AI. AIs work differently than tamoxifen so you may not have the itching and/or hair loss. Or option 4) restart tamoxifen and take a daily Zyrtec, Allegra, Claritin or Xyxal to combat the itch (if that does the trick for the itch) and hope the hair loss slows/stops

Mandycat · September 2017

I had hair loss when I went through menopause. I had the itching and noticed that clumps roots and all came out. It leveled off after a few weeks but did not grow back. Discussed with oncologist after finding out I was supposed to take AI. Decrease in estrogen causes hair loss, weight gain, etc. whether from natural menopause or other means. All the anticancer medications can cause it. Biotin has helped me to regain hair. I have several areas of new growth but am not taking AI. I couldn't tolerate the depression and mood swings and difficulty thinking.

lisey · September 2017

Thanks you guys, I'm open to all my options. I tried claritin yesterday and it wasn't nearly as effective as those two benadrylls I took previously. I'm planning on trying Zyrtec next. I'll try the two week off Tamoxifen to see if the itching subsides. If it does, my plan is to go back on Tamoxifen at either a lower dose (10mg) or switch. I'm an ultra rapid metabolizer of the pathway Tamoxifen uses, so I may be having too much of a Endoxifen build up. My onc has labs she wants me to take to find out if this is : 1) Endoxifen excess, 2) iron levels, 3) thyroid levels 4) other blood work...

My scalp looks normal, but the itching is horrible. I found online other women who said suddenly they had scalp itching on Tamoxifen. it's so weird to just appear after a year of no side effects at all.

lisey · September 2017

A small update: I couldn't take NOT taking Tamoxifen... It was troubling me to give that up too much, so I'm back on it. The rogaine came, it's easy to put on, but when you have a lot of hair (I still have a lot, just not nearly as much as before). you have to just pick places to apply it on the scalp. I'm now on Zyrtec (thank you Lula for that advice) it seems to be working well. Not much itching. I love the Nioxin shampoo and conditioner, it seems to have helped stop the shedding. I'm waiting for the blood tests to come back and I'll return and report.

BarredOwl · September 2017

Hi Lisey:

I am sorry you are dealing with this. You probably have already looked at it, but just to confirm, did you check that there has been no substitution in the brand/generic source of your drug in recent month(s)?

BarredOwl

lisey · September 2017

Hi BarredOwl, Kaiser forces me to use their pharmacy and Mayne Pharma has been what I've been on since I started a year ago. However I do remember reading that Mayne was involved in a purchase, or it was purchased (can't recall) last spring. It could very well be a different set of inactive ingredients, but neither the bottle or pill itself has changed appearance. I'm willing to investigate that road further if I need to.. just hoping to solve it with the bandaid method first - since I doubt Kaiser would pay for a different brand and I'm trying to stay within my budget. If I can get a different brand of Tamoxifen cheaply, I'm willing to test that out as well.

I'm really posting all this for anyone who comes along with the same issue I have. There seems to be only one post other than this one discussing Rogaine, Tamoxifen and Hair loss. I'm hoping my journey may provide useful clues to others.

ksusan · September 2017

BENADRYL HAS A MAJOR INTERACTION WITH TAMOXIFEN! Don't take them together.

https://www.drugs.com/interactions-check.php?drug_list=2145-0,896-1617

Interactions between your selected drugs

Major

diphenhydramine tamoxifen

Applies to: Benadryl (diphenhydramine), tamoxifen

When used regularly or continuously for extended periods, diphenhydrAMINE may reduce the effectiveness of tamoxifen in the treatment of breast cancer. Talk to your doctor if you have any questions or concerns. Your doctor may be able to prescribe alternatives that do not interact. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

ksusan · September 2017

GENERALLY AVOID: Chronic coadministration of potent or moderate CYP450 2D6 inhibitors including certain antidepressants may reduce the effectiveness of tamoxifen. The proposed mechanism is inhibition of tamoxifen bioactivation via CYP450 2D6 to endoxifen (4-hydroxy-N-desmethyltamoxifen), the active metabolite that may be responsible for much of tamoxifen's antiestrogenic activity. This is consistent with studies that reported poorer clinical outcome (e.g., increased breast cancer recurrence; shorter relapse-free periods; lower rates of event-free survival) and decreased incidence/severity of hot flashes in patients treated with tamoxifen who have genetic polymorphisms of CYP450 2D6 resulting in reduced or absent enzyme activity. A similar relationship has been observed between endoxifen exposure and alterations in CYP450 2D6 metabolic status, whether due to CYP450 2D6 genetic variants or use of CYP450 2D6 inhibitors such as quinidine or SSRI antidepressants. In a study of 12 patients receiving tamoxifen adjuvant therapy, mean plasma concentrations of endoxifen decreased by more than 50% after four weeks of paroxetine 10 mg/day for hot flashes, and the effect was evident primarily in patients who carried the wild-type genotype for CYP450 2D6 (i.e., extensive metabolizers). In vitro, quinidine reduced the conversion to endoxifen by 79%. Potential clinical implications of this interaction were reported in a retrospective analysis of nearly 1,300 female breast cancer patients who were newly prescribed tamoxifen between 2003 and 2005 and were monitored for at least two years (mean 2.7 years). Women who used a moderate to potent CYP450 2D6 inhibitor (n=353) during tamoxifen therapy had a two-year breast cancer recurrence rate of 13.9%, compared to 7.5% for those not taking any CYP450 2D6 inhibitors (n=945). The average duration of concomitant tamoxifen and CYP450 2D6 inhibitor use was 340 days. In a subset analysis of patients taking tamoxifen with SSRI antidepressants, a breast cancer recurrence rate of 16% was reported for 213 women who used fluoxetine, paroxetine, or sertraline--SSRIs that are considered moderate to potent inhibitors of CYP450 2D6. This rate was 2.2 times higher than that for women taking tamoxifen without CYP450 2D6 inhibitors. In contrast, the breast cancer recurrence rate was 8.8% for 137 women using citalopram, escitalopram, or fluvoxamine, which was not statistically different than controls. An earlier, smaller study conducted by a group of Danish researchers also reported no reduction of tamoxifen effectiveness in association with citalopram or escitalopram use for up to five years. It is important to note that not all studies have found an association between CYP450 2D6 activity and tamoxifen clinical effects. In fact, a couple of studies even reported decreased risk of recurrence in patients treated with tamoxifen who have a common genetic variant of CYP450 2D6. Investigators suggest that the discrepancies may be due to differences in study designs, including sample size, different genetic models for the assessment of phenotypes, and stratification effects.

MANAGEMENT: Based on available data, patients treated with tamoxifen should avoid the chronic use of potent CYP450 2D6 inhibitors such as fluoxetine, paroxetine, and quinidine whenever possible, and preferably also moderate inhibitors such as bupropion, duloxetine, and sertraline. If an antidepressant is required during treatment with tamoxifen, agents such as desvenlafaxine, fluvoxamine, milnacipran, levomilnacipran, mirtazapine, and venlafaxine may be considered, since they have mild to no effects on CYP450 2D6. Alternatively, aromatase inhibitors such as anastrozole, exemestane, and letrozole may be appropriate substitutes for tamoxifen in certain patients. Alternatively, aromatase inhibitors such as anastrozole, exemestane, and letrozole may be appropriate substitutes for tamoxifen in certain patients.

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lisey · September 2017

Yes KSusan, I'm well aware that they use the same pathway. However, Tamoxifen has a cumulative effect and 1 or 2 days on Benadryll does not counteract Tamoxifen. The point was that Benadryl helped the itching, so I know it wasn't in my head, whereas Claritin did not help me. Lula already suggested Zyrtec. I bought 30 quantity 24hour dosages and so far, the 1st pill is still holding strong. (no itching over 18 hours later!) This is great news for me because if I'm not itcihng my scalp, I'm not remembering how much thinner it is! If Zyrtec holds up like this, I think I'm going to be fine until I see actual bald spots. Then I'll review my options. I'm taking these B vitamin water packets which I love, but given the dosing of them (46,000 X times the daily recommended dosage of B12, I'm curious to see how my blood levels come back. (they are called ZipFizz Energy mix from Costco. holy cow, they are awesome... but 41,000% is a little alarming of a number on the packet.

ndgrrl · September 2017

kissy, when I took B12 my head itched like crazy until I stopped.

lisey · September 2017

I got my blood work back. I"m posting the results.

Two points of concern: My iron levels are normal, however my Ferritin levels are very low. I've read they should be over 50 to be normal and if you have thinning hair they should be even higher. AND my binding capacity is high, 51% is considered high and only 4% of the population has numbers that high.

So I have normal iron, low ferritin and high percentage binding capacity.

Need to figure out how to address this issue. It could be the reason my hair is falling out and have nothing to do with Tamoxifen.

Serum ferritin and vitamin d in female hair loss: do they play a role?

Abstract

AIM:

Evaluation of serum ferritin and vitamin D levels in females with chronic telogen effluvium (TE) or female pattern hair loss (FPHL), in order to validate their role in these common hair loss diseases.

METHODS:

Eighty females (18 to 45 years old) with hair loss, in the form of TE or FPHL, and 40 age-matched females with no hair loss were included in the study. Diagnosis was based upon clinical examination as well as trichogram and dermoscopy. Serum ferritin and vitamin D2 levels were determined for each participant.

RESULTS:

Serum ferritin levels in the TE (14.7 ± 22.1 μg/l) and FPHL (23.9 ± 38.5 μg/l) candidates were significantly lower than in controls (43.5 ± 20.4 μg/l). Serum vitamin D2 levels in females with TE (28.8 ± 10.5 nmol/l) and FPHL (29.1 ± 8.5 nmol/l) were significantly lower than in controls (118.2 ± 68.1 nmol/l; p < 0.001). These levels decreased with increased disease severity. Serum ferritin cut-off values for TE and FPHL were 27.5 and 29.4 μg/l, respectively, and those for vitamin D were 40.9 and 67.9 nmol/l.

CONCLUSION:

Low serum ferritin and vitamin D2 are associated with hair loss in females with TE and FPHL. Screening to establish these levels in cases of hair loss and supplementing with them when they are deficient may be beneficial in the treatment of disease.

Iron	174 ug/dL	Range: 30 - 150 ug/dL ;
total iron binding capacity	342 ug/dL	Range: 222 - 409 ug/dL;
Iron/total iron binding capacity	51 %	Range: 16 - 50 %;

VITAMIN D, 25-HYDROXY

44 ng/mL

Range: 20 - 96 ng/mL;

Ferritin	18 ng/mL	Range: 13 - 150 ng/mL

TSH	1.510 uIU/mL	Range: 0.320 - 5.500 uIU/mL

Vitamin B12	1152 pg/mL	Range: >=350 pg/mL

Free T4	1.10 ng/dL	Range: 0.70 - 1.80 ng/dL

lisey · October 2017

Ok, update for anyone interested. My oncologist called. I need to take an iron supplement 325mgs a day. Apparently the ferritin levels show Iron that actually is helping you and even though I have high iron levels floating around in my body, they aren't helping me. The high 51% binding capacity is a BAD thing. They say if I take supplements for iron, my ferritin will increase and that percentage will go down. So I'm on Iron and L-lysine daily.

Interestingly, low iron levels, especially ferritin have a major role in hair thinning.

My scalp is still itching, but I'm taking zyrtec 24 hrs, and it helps alleviate it. I'm sure the itching is due to the tamoxifen, but I refuse to stop taking it just for itching - especially if I can band aid over it with the zyrtec.

I'm seeing the dermatologist tomorrow to see if they can troubleshoot the itching or have any other ideas.

I LOVE the nioxin shampoo treatment - that stuff is really clean feeling. I tried Rogaine for a week, but given I don't have any 'bald' patches, it was hard to find the same ares of my scalp to put it on nightly. I think I have too much hair for the rogaine to hit my skin... so I've set it aside for a rainey day.

I'll get my blood retested in 3 months and return and report if anything has changed.

ksusan · October 2017

Lisey, I'm glad you know about the interaction affects. I don't assume that people do. My MO is very clear that I am not to use any Benadryl. Different oncologists make different recommendations.

lisey · October 2017

HI Susan, yep. That's why I wrote initially: "You aren't supposed to take Benadryl if you take Tamoxifen, but the itching got too much this am."... I think for 1 day emergencies, Benadryll isn't a huge issue, but longterm, most definitely. I appreciate the link you posted, I used it to make sure Zyrtec and Tamox have no issues. It's a great link.

ksusan · October 2017

Thanks, Lisey.

lisey · October 2017

Hi All, I wanted to update further, as I hope this will be helpful for anyone who stumbles across this thread with the same issues. Went to the Dermatologist yesterday. She wants me to DOUBLE my iron dose, so 2 pills a day. She said the low Ferritin is really concerning to her. Also, she said I have patches of dermatitis on my scalp and that could very well be why it's so itchy. She gave me a spray to use twice a day (prescription Clobetasol .05%) and it's actually really helped as well.

I'm hoping that if I can increase my iron levels AND get rid of the dermatitis, my hair will grow back.

I do think some thinning happens with Tamoxifen, BUT after all this deducing - my itching and hairloss may not be Tamoxifen's fault at all. That's a good thing to me!

Artista928 · October 2017

On Tamox with 0 se's, including no hair loss.

dpianko · October 2017

This exact thing happened to me 14 months after I started on Tamoxifen. My hair regrew fully after chemo. I had no Tamoxifen side effects - zero. I was “in the clear". Out of the blue, without warning, my scalp started itching...and within days my hair started falling out in ropes every day in the shower. It's a VERY long story, but I tried clobetosol....I saw THE top hair loss dermatologist (Dr Jeff Donovan in Vancouver)...had a scalp biopsy. No one could figure out the root cause. However, I stopped the Tamoxifen and 4 months later the massive loss stopped. I went from losing 500/day to 50/day - almost normal for me, but not totally back to normal. Hair typically takes 3-4 months to respond to any treatment or removal of treatment just due to the way hair cycles work. In total, I've lost 50-60% of my hair density (diffuse thinning) over the course of 2 years. This saga went on for a long time until I stopped the Tamoxifen and eventually started on Rogaine. I've never had thin hair my entire life - even after chemo. I had full, thick dense curly hair until this happened.

dpianko · October 2017

Continuation....I didn't put 2 and 2 together until recently. I saw an endocrinologist (Dr Geoffrey Redmond, NYC)recently who noticed my estrogen levels were very low, even after no Tamoxifen for 1 year. The punchline? It's the low estrogen (likely from chemo/ ovarian failure) causing the hair loss - the Tamoxifen exacerbated the situation. My hair has never grown back since this episode except that Rogaine has helped a bit to slow the loss and keep the bit of regrowth I do hsve from falling out. They say I need estrogen supplements to fix it...which of course, I can't take. So I'm out of luck. I'm just thankful it slowed down when I stopped Tamoxifen and thAt the Rogaine has helped a little. I'll never take Tamoxifen again...ever.

My endo says he sees hair loss from Tamox all the time - says it's underreported. Dermatologists will tell you it's not common, and mostly happens with aromatase inhibitors. But my endo disagrees. And so do I.

He also says that just stopping the offending agent (eg Tamox) won’t make your hair always grow back on its own - there is often damage to the folllicles. He says it needs treatment (eg estrogen, anti androgens like Spironolactone or Finasteride, Rogaine) to begin regrowth.

Note: ust for some perspective, I'm 42, and I get my period like clockwork every single month (ever since going off the Tamoxifen). I have no hot flashes...nothing. I had ZERO clue I had very low estrogen. I figured my body had completely rebounded after the chemo and I was tolerating Tamox very well.

dpianko · October 2017

and the last thing I’ll say. I don’t think Tamoxifen side effects have to show up immediate like an “allergic reaction”. The effects of a hormonal imbalance or deficiency can build over time, and I think that’s what happened with me and Tamoxifen. I’ve had every blood test, I’ve taken the clobetosol, the iron supplements, the lysine, the Viviscal. I’ve seen the best doctors. Trust me, it’s not your low ferratin. It’s hormonal.

lisey · October 2017

Dplanko, I really appreciate your time in writing about your experience. If the loss continues and I notice more shedding, I'll re-think my conclusions for sure. I will say that after using that prescription shampoo and the spray daily, the itching has nearly stopped. My scalp feels much better - and the derm did notice I had dermatitis on my scalp. My hair is definitely thinner - but if it stops here.. I'll be ok with Tamoxifen. If it continues to thin, I'll rethink. I'm just so happy the itching has stopped. I'm not noticing the shedding anymore either.

Another potential clue. I started having massages every week in August and she would massage my scalp with her oil. She also massaged my mother twice. My mother commented that her scalp felt on fire after that oil. And that is when I first started noticing the itching / thinning issue. Perhaps her crappy cheap oil caused my dermatitis and started this chain of events? Don't know - but I stopped having her coming to my house last month.

If the hair keeps falling out or the itching returns, I'll post again - I'm hopeful it's all been resolved however. and my hair starts growing back.

By the way... here is a before (2015) - completely natural curls and after (Sept 2017) - had to use a curling iron as my hair has lost most of it's texture and curl.

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gb2115 · October 2017

I agree that side effects take awhile to show up. In addition to the thinning hair, I'm now having dry mouth and a funny taste in my mouth. Saw the dentist and he said it's common with tamoxifen and definitely does not happen right away when you start taking it. Gave me ideas to try to make it better, so I will try to hang in there. :-(

dtad · October 2017

dpianko....so sorry you are having hair loss issues on Tamoxifen. The one thing that stood out in your post was that you saw an endocrinologist who discovered your estrogen levels were low. IMO most MOs know very little about female hormones and we should all have an endocrinologist on our BC team while taking anti hormones. Good luck to all.

lisey · October 2017

Good to know Solfeo! I'm happy to report that using the medicated shampoo and spray, my scalp itching is down to about 10% annoyance level - something I can live with. I really think I had scalp dermatitis brought on from the massage lady's cheap crappy oils she used. I'm not using the Zyrtec or the Rogaine currently, just the spray for my scalp and the shampoo. It'll be months before I find out if my Ferritin levels rise. Hoping they do. I'm not sure any of this was due to Tamoxifen though.

lisey · November 2017

Update: Well I'm out of the spray - I could get more but it makes my hair so oiley I then have to shower.. so I've been just doing the shampoo twice a week. My scalp is still itchy and my hair feels so much thinner. I don't see clumps at all, just an overall thinness, and my curl is completely gone. If Tamoxifen is doing this to my hormones, then in a way it means it's really working fighting the ER+, but at the same time, my confidence has sunk quite a bit. I still have a full head of hair - but I can't even keep a bearclaw clip in it anymore - it just slides off. All the texture is gone. I'm only 42 so pretty bummed. I can live with it this thin, but not any thinner... They say 40% of women experience hair loss during Menopause... I didn't think I was in Menopause - I have regular normal periods.. but Tamoxifen could still be throwing my hormones into it, periods be damned. An AI wouldn't be any better - since I'd need my ovaries out.. so I'm screwed.