Shedding Not Stopping After Change Of Birth Control

[Laylaa]

Hi all - thanks so much for taking the time to read this. Hopefully someone is able to relate to my story. Please let me know if you have any advice.
Around September 2016, I went in for my yearly gyno appointment hoping to refill my prescription of yaz birth control that I had been on for roughly 10 years. Unfortunately, my gyno wouldn't prescribe that pill to me due to a recent change in my family history (it contains estrogen). I then switched to a progesterone only pill around October 2016, and then switched over to the IUD in February 2017. About two - three weeks after I got the IUD inserted, is when the hair loss started. Or rather, when I realized that the thinning and shedding wasn't just in my head.
It's now only been about two months, and my hair loss becomes more noticeable each and every day. It's so incredibly upsetting and depressing - and psychologically exhausting. Whenever I try to get my hair loss out of my mind, I'll accidentally run my fingers through my hair, and notice 4 or 5 hairs come out. Taking showers is a disaster. Brushing my hair is worse. This is particularly upsetting to me as I had very very fine hair to begin with, and literally needed every hair on my head. I can't imagine how bad I'll look as this continues to progress considering I have already lost around 40% of my hair. It makes me upset to learn how vain I am and how much of my self worth is wrapped up in how I look.
I understand this is likely telogen effluvium, and am hoping for regrowth. I feel my trigger was cutting out estrogen back in October, as the new birth control methods I was put on only contained estrogen. However, no doctors can say anything for sure. I'm getting the IUD removed just in case that's a potential contributing factor - and will be going hormone free for the foreseeable future. I am taking professional viviscal and biotin, as well as spirolactone to hopefully help regulate my hormones.
Anyone out there that has had/having a similar experience? Also has anyone used clip in extensions during telogen effluvium? Wigs? Anything is super helpful.

 

[Sjw1582]

Hi laylaa

Just wondering how you're getting on now?

Can I ask what IUD you had and what the results have been since having it removed?

I had a Mirena coil put in April 15 and I noticed dramatic hair shed by august 15. I stick with it hoping it would rectify itself; after about 4 months it just stopped so happy that it was a bout of Telogen Effluvium that sorted itself I left the mirena in place.
In May 16 the shed started again for no apparent reason. It has been 12 months now and the shedding has not stopped. It has reduced mildly but still going.
Convinced it was the mirena causing it after being diagnosed with CTE and androgenic alopecia; I had it removed last November. I am now 6months post mirena and still my hair is shedding.

I have lost about 50:60% density. My parting is thin if I stand under bright light I can see the shine of my scalp! It's worse around the crown and temples. I have had all the blood tests done and they all come back normal. I have seen an endocrinologist and he wasn't much good. My doctor is at a complete loss. I've been taking vitamins minerals and 4%minoxidil for a year now I've had 6months of laser therapy and no luck.

I'm only 35 with a younger husband and 3 children and I'm at the end of my tether.
I've been told to try Dianette from the endo but after researching that could make the problems worse.

I'm convinced the IUD started this I just have no idea how to stop it.
I really hope you have a better success after removal. Xx

 

[Laylaa]

Hi there,
Sorry for the delay. I've been waiting to write again until I had positive news to share. I am sorry you're going through this - believe me when I say I get it. I'm 24 and my confidence and self esteem has really suffered from this. Hope you're doing better.

I had the Skyla IUD - which I believe has the same active ingredients as the Mirena. The doctors believe that my going off of yaz (which contained high dose of estrogen) was what triggered my Telogen Effluvium episode.

I'm hesitant to say that I believe my shedding is finally on its way to stopping. It's really slowed down - definitely still not "normal" but nothing compared to what it was. My hair still looks absolutely terrible since I had incredibly thin hair to begin with. Looking back at pictures in April though - I can say that some of the patches have begun to fill in. The temples and crown is where I was hit the hardest too. Wearing my hair up isn't an option anymore since my scalp is totally visible on the sides.

All I would reccomend is to go completely hormone free, and remove any possible triggers you think could be playing a role. Are you taking any new birth control pills or medication?

 

[Sjw1582]

Hi Laylaa

Thank you for your reply, appreciate it.

So pleased your hair is improving, please let us know if it does continue ur too.

I am currently not taking any other synthetic hormones as I just can't make my mind up. There's so many conflicting stories. I am waiting back on more blood tests that will no doubt comeback 'normal'.

My shedding has not stopped nor seems to be slowing down. I'm now 8 months post removal of IUD and 14 months of constant shedding. I completely understand the self esteem issues as it affects everything I do. I'm a bridesmaid next month and whilst all the other girls are getting their hair done beautifully I've had to tell them I can't do anything with mine. I hate making social plans and when I wear my lank stringy hair down I'm constantly pealing loose hairs from my arms so it never leaves my mind.

I'm healthy In every other area and just don't inderstand why there isn't an explanation or cure to stop this. My doctor has lost all patience with me and has even told me he doesn't believe it's much of a problem, but if I'm anxious over it I can have some anti depressants!!!! Seriously!

I'm thinking my next move is to try finasteride. I'm just worried that I may well make everything worse.

 

[Laylaa]

That's so crazy this has been going on for 14 months, have you seen a hair specialist yet? That was my next step if my shedding didn't start to slow - but this is a really expensive option and they don't take insurance.

What I would reccomend, and what I found that helped me, is allow yourself to understand that your body is going through something terrible and something that is upsetting to you, but also something that is completely out of your control. It helped me to realize, okay - now I have done everything I can. I am taking professional viviscal (which is supposed to promote growth), I've gotten my blood work done, now I just need to wait and let this run its course. I understand the anxiety and depression and all of that - I saw a therapist which I think also helped me. I really think that hormones initially caused mine, but the intense stress that I was under during the upsetting shedding, prolonged my issue and made it worse. I'd reccomend seeing a therapist as just someone to talk to and work through your feelings.

What also helped me with the appearance issue (which is still an issue as I still have such little hair), is going to a wig store, and buying hair wefts. They're clip in extensions, but they look completely real and has helped me regain confidence for when I want to go out or go on dates etc. It seriously makes all the difference. Then I use a bit of hair fiber powders to fill in some gaps in my part.

Good luck!

 

[Jpu]

• Hi, I am having a similar potentially hormone related issue (combined with stress). So I was on a low-estrogen pill where the progestin was low on the androgenic scale. In Feb 2017 I decided that taking the pill everyday was too annoying and decided to switch to Nuvaring. Apparently the Nuvaring is very high on the androgenic scale and known make hair loss worse in people suffering from stress related or genetic hair loss.

Sometime between Feb 2017 (or earlier, I had a lot of stress in my life from Sept. 2016-March 2017) and May ,2017, my part trippled in size, my hairline started receding, and I last like 50% of my natural hair. Most of hair loss seems to be around my part and towards the front of my hair line.

I spoke to my gyno, primary, and went to a dermatologist. I quit the nuvaring and switched back to my old birth control pill, started taking vivisical, and have stopped using hair dryers, flat irons, any direct heat altogether. I've been putting castor oil and other essential oils on my scalp and trying to massage daily to increase blood flow. Been doing all of this for about a month now.

So far- no signs of regrowth! Any suggestions on what else I can do? How long before your hormones settled out and you started seeing any signs of regrowth. Thanks!

 

[Laylaa]

You 100 percent need to give it more than a month. My hair has been drastically shedding for over 4 months and it's just starting to slow down and show slight signs of regrowth. I would ask your derm if there are any shampoos that would help (e.g. Shampoo to help inflammation, or shampoo to help dandruff). When I was going through my huge waves of shedding, my scalp was very irritated and it was painful/burning.

As I'm sure you've already googled - but hair grows no more than a half an inch a month. And even this in mind - not all the hair follicles on your head are in the same hair growth cycle so they'll come in at different times.

Believe me I know how much it sucks. And terrible timing for the summer. I can't go swimming. You can see every bit of my scalp when my hair is wet. I just hope my hair fills in soon because sometimes I think it's just continuing to get worse. It's so hard to tell.

Never ever going back on hormones. It's really so terrible that they can have this effect on our bodies.

 

[Sjw1582]

Hi guys

How are we? Any updates or improvements?

So I am now 16months shedding with still no answers. I've gone to another endocrinologist and he's requested some tests, main one being a test for adrenal fatigue. Awaiting those results however if they come back negative then I've hit another brick wall. I know people say just have to accept that your body is going through something but I can't really as it wouldn't be going through it for no reason there has to be a reason- so what is it and how do I fix it. So upsetting and frustrating.

Up until now I have been minding my weight and working out to try and keep myself as healthy as possible but it's getting to me at the moment so much that I've got no motivation I'm slowly gaining weight around my middle again and I hate looking in the mirror at my hair. The lank way it hands the fact there no volume I have to colour my parting in my lank and loose ponytail is like a rat tail it's so thin my 4yr old daughter has a thicker one!

I refrained from taking anything other than vitamins for the time being as I really want my body to sort itself out rather than flood it with more synthetic chemicals that may have side effects. I'm just at a loss as to what to try next now. I've finished my laser therapy course and although I did see some regrowth there, the new hair falls out too.

Be good to hear how everyone else is doing?

X

 

[Laylaa]

Thanks for the post.

Unfortunately my shedding has been back really bad - and my brief period of improvement stopped. I've lost 50 percent hair density in just 6 -7 months. I've been to a handful of doctors, and even got a scalp biopsy last week. This hair specialist I saw says that by me going off of yaz I likely triggered rapid onset on androgenic alopecia - female pattern. She seems to think the results will prove that - I get them back tomorrow.

I am unsure on what my next steps are. I'm single and am only 24 - certainly didn't expect or plan for this terrible disaster that has crushed my confidence. I am confident at this point that all of my hormone changes caused this permanent hair loss for me. I'm really discouraged and don't see this stopping or improving. I'm literally looking into treatments that are still in the clinical trial phase - PRP - to regrow hair. I'm desperate. I'm not exaggerating when I say my pony tail is the same thickness as my thumb. I can't believe how much hair I've lost in such a short period.

There's not much on the internet that leads me to believe this problem improves

 

[Sjw1582]

Oh Laylaa

I know what your feeling- it really sucks!! I wish there was something I could say that would make it better.
I too have been told I have early onset of Androgenetic Alopecia which annoys me quite a bit as no one - men included- in my family have lost their hair. My grandfather is 96 and still has a full head!! Constantly asking the mirror 'why me'.
It does seem to be the pattern as it's going from the crown and temples however I also have the diffuse shedding.

I plucked up courage to have about 3" chopped off the bottom yesterday. It hasn't been cut in 18months and as it hasn't been growing just shedding it was different lengths and really dead on the ends. Although it looks better (for now) I can't help panicking that it won't ever be long again and I'll just have to keep chopping off the ends till it's non existent.

How did the biopsy go? Hoping there was a bit of good news for you. X

 

[Laylaa]

Results were pretty useless and frustrating. It just showed androgenic hair loss and shrinking of my hair follicles. I went back on my poisonous yaz birth control, and am hoping this solves the issue. I have my doubts about it all since, I'm not sure I've mentioned this previously - but my roommate started to lose hair 2 months after my hair loss started. Here has gotten progressively worse too. We made the decision that if my hair doesn't stop shedding after a month on my birth control, that we are moving out of the apartment. Thinking it may be mold or an issue with the water - no idea.

I have a similar frustration with my family history - no one has lost hair. My mom and aunt and grandma, all full heads of hair- both sides of my family. Don't get me wrong, I always had fine hair, but nothing like this. Never thought it'd get this bad - ever.

Have you looked into PRP treatments at all? I'm trying everything. Taking vitamin D, biotin, and iron - and now my yaz birth control.

 

[Sjw1582]

Hey laylaa

How's things going on the yaz?

Had more results back from the endocrinologist and guess what, yup everything is normal!! Try telling that to my hair, not to mention my skin which breaks out in spots and the hair growing on my upper lip!! I'm 35 I shouldn't have zits and previously to this had lovely skin. But apparently there's nothing hormonal going on! So frustrating.

So it's been 17 months of constant shedding. The minoxidil helps regrow tiny amounts but they cycle too and don't seem to get past a couple of inches in growth. My parting is still getting wider.

I'm considering going back on a bc just to see if it helps but my age is a problem as they don't like to put you on the pill past 35.

Funny what you said about your flat mate though. I have 2 daughters one is 14 and she loses lots of hair and I've noticed more recently her hairline at the front is quite sparse. She had very thick hair though so you'd not notice. Also my 4yr old has hair to her bum but her parting is becone much wider and she's getting very thin at the front. I had changed all our shampoos but it makes no difference. I also give them regular vitamins.

Anyway let me know how the yaz is working out for you.

X

 

[Sjw1582]

Hey Laylaa

Any updates? Hope you’re doing well.
X

 

[Laylaa]

Hi - thanks for checking in. No good updates to share. Hair is just continuing to get worse and I'm going to make an effort to get a consult at a hair salon specializing in extensions for people with thinning hair. Feel like it's my only option at this point.

I've been on yaz for 3 months now - no improvement. My roommate is still losing hair too - so we moved. We have been in our new apartment for 3 weeks now, so I am really really hoping hair improves in a few months and it was something in the environment in our last place. Who knows..

Are your daughters still losing hair?

 

[Sjw1582]

Sorry to here that, was so hoping you’d had a turn around.

I have got a little desperate now and opted to try the BC Dianette I’ve just started taking it this week so I don’t know how long it will be if I start seeing results. I’m a little worried it will go the other way and I could have a huge shed and it will all just give up. I definitely have FPHL as my crown is thinning as are my temples more and more. What worries me is the rate that it’s going. However it’s b en set off by the CTE which I still don’t have a cause or solution for.

Yes the girls are still losing it too but it seems crazy to think it’s environmental as we haven’t had these problems when we moved in. For a year we were all in great health. Unfortunately there’s no way of moving for us.

Please do keep posting your progress though. It’s somewhat of a comfort to know I’m not alone.

Good luck in your new place!

 

[Laylaa]

Maybe your daughters aren't really losing hair then and you've just become more aware of people's hairlines?

I got the consult and I think I'm just going to bite the bullet and get the extensions - although that won't help my thinning part... But maybe it'll help me to not stress out so much about the appearance of my hair, and then maybe that in turn will help my hair? I can't believe I'm having this issue at 24...

Have you looked into anything like that

 

[IdealForehead]

My sister has pcos. A progesterone iud will do nothing for hair loss.

Yaz is good. If it doesn't work step up to yasmin. If that doesn't work step up to a cyproterone based ocp if you can get one.

spironolactone's okay if you can handle 100-200 mg a day.

Make sure you're using minoxidil 5% twice daily. Or 2.5 mg to 5 mg orally twice a day.

If that's insufficient or intolerable try a topical antiandrogen like RU 5-10% 2 ml twice daily.

Some combination of the above should stop hair loss for most women.

 

[Sjw1582]

Hello idealforehead

Thank you for your reply.
I recently tried Dianette Cyproterone Acetate and was on it for only 10 days before my heart rate changed and I ended up at the hospital with palps and breathing issues. I came off it 4 days ago and am starting to feel better. The crazy thing is o actually think it had already started to have a positive affect.
I’m scared to try Yasmin as I believe it will have the same affect on my heart and that’s more important.

I’ve not heard about a topical antiandrogen and will make enquiries but not sure it’s available in U.K. I have also been on minoxidil for 2 years with little effect as when the small hairs grow in they get to about an inch before they fall again.



X

 

[IdealForehead]

Hello idealforehead

Thank you for your reply.
I recently tried Dianette Cyproterone Acetate and was on it for only 10 days before my heart rate changed and I ended up at the hospital with palps and breathing issues. I came off it 4 days ago and am starting to feel better. The crazy thing is o actually think it had already started to have a positive affect.
I’m scared to try Yasmin as I believe it will have the same affect on my heart and that’s more important.

I’ve not heard about a topical antiandrogen and will make enquiries but not sure it’s available in U.K. I have also been on minoxidil for 2 years with little effect as when the small hairs grow in they get to about an inch before they fall again.



X

Yasmin is weaker than dianette and it uses a different antiandrogenic progesterone. If there's nothing actually wrong with your heart even if you get palpitations it's not likely to be a big deal. I get palpitations when i take oral minoxidil but who cares.

I would try the yasmin.

You need a proper antiandrogen and for women antiandrogenic birth control is the most logical approach.

Topical antiandrogens like RU aren't "regulated" or available in stores. They're sh*t we order online when we're desperate and all else fails.

My sister hates the birth control pill, couldn't tolerate spironolactone, so i got her on my RU plus minoxidil and she's been doing okay. But like i said it's unregulated stuff. You can read more in the antiandrogen section of the site.

 

[Sjw1582]

Thank you! I May try the Yasmin next. Although my dr was reluctant in the first place as I’m 35.

I have ectopic beats and a minor murmur.

I guess it’s trial and error
X