Regaine/Minoxidil users support thread

[MargotMoon]

I've just started my second month's supply of Regaine 2% and I'm trying to hold my nerve because the shedding over the last couple of weeks has been a bit alarming, although I was expecting it.

I'm using the liquid and applying once a day at bedtime but using double dose, as can't apply morning and evening as it makes my hair so greasy. Have ordered the foam to try next month to see what that's like, but that's a once a day formula anyway.

Please tell me it will get better!

[WeAllHaveWings]

@Shihtzu

Yes it knocks confidence and is scary. I personally would not use Regaine. I could not cope with it and my scalp is utterly sensitive since I had a Basel cell carcinoma removed. I’ve had dermatitis and so won’t be putting drops of god knows what on it. Just my personal view. To me this is coming from the inside and needs dealing with both mentally and physically.

There are multiple reasons - trauma, stress, disease, hereditary, deficiencies etc

According to ds's dermatologist minoxidil (regaine) is the only clinically proven treatment for hereditary hairloss, but only works for a small minority of people. She also prescribed a ketoconazole shampoo for him 2-3 times a week that helped some people. Neither helped ds and she said for his hereditary hairloss (at 16 🙁) the only alternatives were surgical and not recommended for his age. They are worth a try but no guarantees. No diet, vitamins or positive thinking will solve it.

[Shihtzu]

I most definitely think stress makes it worse, no matter what the cause. I don’t think it’s taken seriously enough by medics who all claim to be concerned about mental health. There are many things that claim to regrow hair but don’t, plenty playing on people’s bad fortune.
I’m concerned because I’ve seen some HRT can cause hair loss. It’s a minefield.

[bluetongue]

So I got a call from GP surgery about my blood tests today. Apparently hormone levels were normal (which actually surprised me as I have many symptoms of PCOS) but iron studies were abnormal and I need an appointment with GP about it. Would be great if iron supplements solved my hair issues.

I’m also fatigued a fair bit of the time and actually took a sick day off work recently due to simply feeling exhausted. Of course this is usually brushed off by GP as I’m on anti depressants and everything gets put down to my mental health issues.

I actually asked for the iron blood tests after reading about the low iron and hair loss link on Mumsnet.

[MargotMoon]

I spoke to a GP yesterday (not my own - they have been less than interested, it was through my work health plan) and she was really helpful.

She started by saying she thought minoxidil was a waste of time and money (which I know anyway!) and to see a dermatologist not a trichologist (@Shihtzu I nearly told her that I had learnt that off Mumsnet this week )

My ferritin was 32 in December and she said I need to get it up to 80+. Also that I should get my something or other level checked and if it's above 20 I'm perimenopausal and should ask about HRT.

The best piece of advice she gave was to take iron tablets every other day as it is easier to absorb and should reduce constipation which I get with it - that's the only reason I stopped taking iron years ago. I bought some Ferrograd which is the slow release one.

[Shihtzu]

Liquid iron Floradix is very good and gentle on the stomach. My iron is 75 but hair horribly thin. I’m now having trouble trying to sort out HRT. Some cause hair loss so be aware!

[NonsensicalHair]

HRT made my hair fall out, unfortunately. Had such great hopes for it too.

[Shihtzu]

If the progesterone is one that is highly testosterone related, I’ve read can make hair thinner.

[notwavingbutdrowning5]

A couple of tips on minoxidil. Yes, the 5% one says women shouldn’t use it but I was prescribed it by a highly respected dermatologist and told to use it twice a day.

The Regaine liquid is notoriously bad for sensitive scalps, whereas the foam is usually fine. However, it’s messy to apply. So I put the required amount of foam in the cap, hold the base of the cap under hot water until the foam melts, then apply it with a dropper. So much easier.

Finally, if you’re not seeing any improvement with minoxidil, bear in mind that although it might not be producing more hair, it may be preventing the hair loss getting worse. So if it’s stabilising it it’s worth taking.

Definitely get your iron, zinc, folate, vitamin D and B vitamins checked, and remember that they have to be at the top of the acceptable range

And yes, highlights - a lifesaver! They swell the hair shaft and your hair looks thicker. You need to go to a really good hairdresser who will put plenty in though.

[notwavingbutdrowning5]

Oh. And yes - some forms of HRT cause hair thinning, others protect against it. My dermatologist prescribed femiston conti, which is one of the good ones.

[MargotMoon]

I've got an appointment with a private dermatologist next Thursday. Thankfully the £200 cost will be covered by my health cash plan, but after that any fees won't be, so I feel like this is my last-ditch attempt to get some answers/treatment.

Iron tablets every other day are working out much better than whenever I have taken them 3x daily - they are still affecting my bowels in unpleasant ways but it's manageable (just). Only time will tell if it's improving my ferritin count.

[Shihtzu]

I’ve been prescribed Oestrogel and Utrogestan, body identical HRT.
I’m hoping this improves post menopausal thinning. 🤞

[MargotMoon]

@Shihtzu Good luck!

I've got my hairdresser appointment on Thurs afternoon, a cut and colour. Hope it doesn't interfere with the dermatologist consultation - I've waited months for this appointment and have no intention of postponing it!

[Shihtzu]

Let us know how you get on with dermatologist.

[bluetongue]

I got my Ferritin blood test results today. 14. While it could be worse it’s still pretty low. GP was pretty non-committal as to whether this could be causing my hair issues. All hormone levels were completely normal. I’ve been feeling pretty tired for a while and have taken two days off sick this year due to feeling exhausted. My sleep is also terrible which I believe can be linked to low ferritin.

Dermatologist appointment is mid May so fingers crossed they can help. I also still have acne in my mid 40’s which I want to fix once and for all.

[MargotMoon]

The GP I spoke to said they need to be at 80+ for hair growth. Don't know if mine has ever been that high! She recommended taking 1 tablet every other day, first thing, on an empty stomach.

[MargotMoon]

I saw the dermatologist at the end of April. He was completely lovely and it was so nice to speak to someone who took my concerns seriously.

He formally diagnosed androgenic alopecia and said I needed to get my iron levels up which I had already started.

For treatment he gave me two choices. Firstly trying minoxidil again - a formula including DHT blockers, caffeine, etc. I turned that down because it's so expensive and I've already had a bad experience with it causing my scalp to go red raw.

Second choice was to try spironolactone, which is only available on prescription - but it's unlicensed. It's not specifically for hair loss but a side effect is that it is an anti-androgen. I think it might also be used to treat PCOS?

I've got 50mg/day for 2 months and then need to have my kidney function checked. If that's ok I can increase to 100mg/day and the best thing is that my GP has agreed to prescribe it on the NHS, which the consultant said they might not do because it is unlicensed. That means I don't need to pay him a £150 fee every time I need a new prescription, although I expect I will need a consultation once or twice a year to check progress.

So I feel like I've finally got some treatment and good advice! It might not work - getting my iron up has always been a struggle - but at least it's not a dead end. Like my hair follicles

[Shihtzu]

Hi, did he diagnose from hormone blood tests or visually/both? I’m wondering why he didn’t suggest HRT like my specialist has. It’s so utterly confusing. Mine is telogen effluvium and post menopausal thinning and I’m wholly sick of it!
I hope you get on well with tablets.

[MargotMoon]

He diagnosed visually. He didn't do any blood tests although I showed him the last set of results I had from my GP. I'm not perimenopausal yet although I don't recall him asking about MP symptoms now I think of it

[bluetongue]

Good luck with your treatment MargotMoon. How are you feeling mentally? All things hair loss have become a bit of an obsession for me. Having thin hair has knocked my confidence and I’m willing to try nearly anything to get it back. It’s fairly well hidden with my hair down (worst is at sides / temples) but it’s not very practical to not put my hair up.

I had my dermatologist appointment a week ago. She was lovely. Thinks it’s androgentic alopecia. I’ve also been prescribed spironolactone but it’s only 25 mg. I don’t have another appointment for 6 months and no mention of blood tests. Would it be rude to contact the office and tell them I want to take 50mg? I’m really worried that if 25mg isn’t enough and things have got worse in 6 months then I’ll never forgive myself. I was also prescribed oral minoxidil. That means no more messy foam which is great.

I’m on iron supplements and go back to get my blood retested in three months. Also transexamic for my heavy periods.

I really hope something works!

[Shihtzu]

Can I ask how old you both are? I’m just wondering if because I’m post menopausal that’s why I’ve been put on HRT?

[bluetongue]

@Shihtzu

Can I ask how old you both are? I’m just wondering if because I’m post menopausal that’s why I’ve been put on HRT?

I’m 45. Still have regular periods (well fairly regular). Hormone levels have been tested and are normal.

[MargotMoon]

@Shihtzu I'm 46 and have no MP symptoms

@bluetongue It wouldn't do any harm to ask! Maybe you're on a lower dose bc it's supplementing the minoxidil, and loss of kidney function is less likely in smaller doses? That's why I need to have mine checked. I didn't know you could get oral minoxidil! I'm going to ask about that. Is it a private prescription?

Mentally I'm ok, think now that I'm getting some treatment it feels a bit better. But I'm sure the despair will return if it doesn't slow or stop the shedding!

[Shihtzu]

@MargotMoon I think it’s possible to be peri and not have symptoms apparent immediately. Blood tests would determine. If the anti androgens don’t work it’s possible HRT would help by putting Estrogen back to normal levels.

[MargotMoon]

I'll ask the dermatologist about that when we speak!

[bluetongue]

[quote MargotMoon]@Shihtzu I'm 46 and have no MP symptoms

@bluetongue It wouldn't do any harm to ask! Maybe you're on a lower dose bc it's supplementing the minoxidil, and loss of kidney function is less likely in smaller doses? That's why I need to have mine checked. I didn't know you could get oral minoxidil! I'm going to ask about that. Is it a private prescription?

Mentally I'm ok, think now that I'm getting some treatment it feels a bit better. But I'm sure the despair will return if it doesn't slow or stop the shedding! [/quote]
I’m not in the UK so not sure what the situation is there with oral minoxidil. It seems to be pretty common in the US (I’m I Australia). I had to get it from a compounding pharmacy so it was a bit of a faff but worth it.

Part of my problem is the only other time I’ve ever been to a specialist was another dermatologist 20 years ago so I have no idea how it all works! They have an email address so I might just send an email.