Extreme Hair Loss Advice

[Juliet_22]

Hello All,

While I'm waiting to see a dermatologist and a doctor about my hair loss, I would really appreciate some extra advice from all the beyond amazing people of this forum.

I've always had some hair loss since having hypo, but nothing like I'm losing now, ever!

It's so extreme, I don't even brush my hair now and wear a pony tail all the time because it comes out in handfuls, even if I just sit down and do nothing at all.

The most interesting part is that it started to happen to this extreme level since I switched to NDT (Erfa).

Although NDT has helped me balance my Ts nicely (T3 was 70% of the range, T4 was 47% of the range, TSH was very suppressed, on a hyper side of things), it has also resulted in discomfort in my neck, extreme hair shedding and raised my anti-bodies. So I switched back to levo just recently.

But my extreme hair loss started on NDT, so I "blame" NDT for it, I've never had it that bad on levo.

While I need to raise my ferritin more to 80+ from 50 (hemoglobin was normal), I've never had such bad hair loss even when my ferritin levels were lower before, at like 30 before. I know you need it at 70+ for the hair to grow better, but as I said even with lower ferritin I've never had such bad hair loss.

I keep my D, B12, folate etc in the ideal ranges recommended on this site and test regularly. Take zinc too.

My last 8.30am cortisol tested 6 weeks ago was 419 nmol/l, so unlikely to be the adrenals.

I test things in a fasted state and don't take my meds on that day.

I don't have bold patches thankfully and my eye brows and lashes are fine, I can also see some new hair growing too, but it comes out in bunches and totally stresses me out.

I would really appreciate your thoughts and experiences, please.

Thank you so much!

[arTistapple]

Just read yesterday on Westin Child’s site that high T3 can cause extra hair loss. I think he even mentioned NDT. He recommended Creatine 5mcgs per day.

[Juliet_22 in reply to arTistapple]

Wow, this is so interesting! I would love to see the article, if you have it. Thank you so much for your input!

[arTistapple in reply to Juliet_22]

Juliet I am hopeless on the computer, I can’t put up references. However, honestly his website is easy to find- I just hope I have passed on the correct info because I know how awful hair loss affects women. Of course he has all his own ‘supplements’ for sale but he is definitely not down your throat salesman. I got ‘clean’ creatine from British Supplements. Read his article right through before purchasing.

[arTistapple in reply to Juliet_22]

Juliet I have tried again but I can’t make it work. I will see if my daughter is savvy enough. Unfortunately the ones humanbean has been kind enough to find are not the one.

[asidist in reply to arTistapple]

Hey arTistapple, there’s some research evidence (and a number of anecdotal reports on Reddit etc) that creatine can actually increase hair loss in those predisposed. The thinking is it does this by indirectly raising levels of DHT. There’s a 2021 research article disputing that evidence but it’s industry-funded.

I actually bought creatine to help with cognitive issues after doing some research on best options, but came across this information right after and sadly ended up never using it, since Ive been struggling a lot with thinning hair the past several years.

[arTistapple in reply to asidist]

Asidist. Everything we seem to do is a potential minefield. Nothing straightforward. My precaution to Juliet was to read the whole article. I was so impressed that before finishing it (better muscles, less pain, more energy etc etc) I had ordered it. Then got to the ‘precautions’ of using it. No can do with CKD! So mine unused too.

[asidist in reply to arTistapple]

Yes that is one of the few other precautions I remember reading about, of what otherwise seems like a pretty benign and helpful supplement. I’m sorry that it didn’t work out for you either! It did make me laugh though to think of us both with our new but useless packages of creatine. Mine recently expired so I can’t even give it to someone else who might be able to benefit.

So true re everything being a potential minefield

[humanbean]

I don't know if this is the article arTistapple was referring to :

restartmed.com/thyroid-hair...

I've also got these links which might be helpful :

thyroidpharmacist.com/artic...

discover.hubpages.com/healt...

[Juliet_22 in reply to humanbean]

Thank you so much for the articles and links! What a puzzle to put together ... to little hormone = hair loss, too much hormone = hair loss. NDT can cause hair loss temporarily, or maybe all the time, maybe add synthetic T3, but that might also cause hair loss. My oh my ...

[Batty1]

restartmed.com/?s=High+T3+l...

You may like these articles

[arTistapple in reply to Batty1]

Thanks Batty, this is the guy but it’s still not the article. If Juliet follows this reference though she will have a much better chance of finding the article I was talking about.

[asidist]

Juliet I found taking pumpkin seed oil orally to be IMMENSELY helpful. Someone mentioned it on a forum elsewhere so I gave it a shot as it seemed to be the most benign of all the options out there and there’s a lot of research evidence for it. I took 1/4 tsp per day (~1000 mg) and was very pleasantly surprised, saw a difference almost immediately. Apparently the phytosterols/phytoestrogens are the key factor and have hormonal effects.

I stopped taking it because I’m actively trialing different doses and brands of thyroid hormone (meds) and didn’t want to muddy the waters with another variable (tho my hair loss is so unfortunately so bad these days thinking of adding it back in regardless).

The only downside (for me) was that it made me a little less curvy on top. I’m premenopausal with regular periods so maybe it was inhibiting/blocking some of my natural hormones. Have not come across anyone else noting anything similar so I’m guessing that may not be typical.

If you’re interested in trying it, I think quality makes a huge difference and I’d suggest getting the highest quality, freshest, raw, cold-pressed pumpkin seed oil you can get your hands on. Mine was a rich, dark green color. Store what will be used in the next month or two in a dark bottle in the fridge and freeze the rest.

Hope that helps

[TiggerMe Ambassador in reply to asidist]

Possibly worth getting your testosterone levels checked as if high it can lead to hair loss from you head and sprouting elsewhere 😕.... can be a peri meno symptom as other hormones drop off and leave an imbalance

[asidist in reply to TiggerMe]

Thanks for the thought Eeyore. Yup I am planning to ask to have all my hormones checked again at my next apptmt.

I think that my hair loss is related to thyroid issues rather than sex hormones for several reasons - started having hair loss just before I turned 40 around the same time I started experiencing a bunch of other classic thyroid issues (puffy face, fatigue, cognitive issues, dry eyes, swollen tongue, etc) while on levo monotherapy with presumably years of low normal T3, and the last time I had my sex hormones checked after a couple years of thinning hair, they were mostly unremarkable with testosterone actually low in range (Total 18, range 8 - 48 ng/dL; Free 1 range .0 - 4.2 pg/mL). I also don’t have hair “sprouting elsewhere” (lol) thankfully - at least not that I’ve noticed so far!

From reading about it years ago, my understanding was that DHT can cause problems even when testosterone isn’t high. I wonder if inadequate T3, which I still have, impacts the conversion to DHT? Clearly DHT seems to be an issue for me considering PSO works so well but just not sure why considering my lowish T. (Admittedly, know near nothing about sex hormones and don’t want to have to learn! Thyroid hormones are enough to deal with)

All said figured it would be worth checking all the hormones again now, hopefully with input from someone with some expertise in menopause, and because I’d be curious to see if anything changes if/when I start taking PSO again.

I know you had previously mentioned taking an amino acids supplement helped your hair - I’m planning to try that as well for potentially even more of a boost! Microneedling is another route I’ve found to be really helpful in the past.

For now I’m limiting what I use/do but it’s SUCH a relief to know there are some reliable ways to deal with the hair issue when I’m ready to use them.

[asidist in reply to TiggerMe]

And thank you for the point about imbalance in sex hormones that can occur as some drop off. It’s very possible that my hair loss began with thyroid issues but over time sex hormones have also begun to play a role.

[TiggerMe Ambassador in reply to asidist]

I'm sure you are right that it's likely linked to the NDT but then they put in the too much/ too little caveat which is really helpful isn't it 😕

Glad to hear your not sprouting 😅 when my fT3 crashed it took all the other hormones with it so now all live in the bathroom cabinet... daily spray, capsules and gel 😁 getting them back on an even keel certainly helped smooth the thyroid ride

[asidist in reply to TiggerMe]

The NDT issue was what Juliet was trying to sort through (though agree that caveat certainly was not helpful!). Ive been on synthetic T4/T3, but yeah, had presumably low or low in range T3 for a long time while on T4 monotherapy before going low on both in recent years, so hair loss would not be unexpected in that context for me.

Funny thing, a couple days after our conversation I found a true “sprout” (like an inch long!) on my jawline! I have acne-prone skin so I examine my face pretty closely when I wash and do my skincare every night and it DEFINITELY wasn’t there before our convo - a crazy real-life jinx 😂

Interesting (but scary) about your FT3 taking all your other hormones down, hmm. Now even more curious to recheck my other hormone levels. Thanks for sharing.

[TiggerMe Ambassador in reply to asidist]

🤣 so no real problem with hair growth... just trying to encourage it in the right place like the rest of us 😆 sorry I sent you a sprout!

Generally mine are fair until like you say an enormous black whisker magically appears under my chin 🧔‍♀️

[asidist in reply to TiggerMe]

It does feel like a waste to pull out and throw away a healthy, young sprout when they’re in such short supply where I need them😂

Lol, never seen that emoji before - very fitting. 🙃

[Juliet_22 in reply to asidist]

How interesting and really didn't know about pumpkin seed oil! Yes, that one is a lot more natural. Thank you for sharing!

[Litatamon]

Just want to add that I lost tons of levothyroxine (no matter dose nor good/poor labs), none -seriously hair just stopped falling out pretty well immediately- on Thyroid S NDT. And my Thyroid S labs were abysmal.

Am now on Erfa and it is not extreme like levothyroxine (Synthroid), but still losing it.

So I am not all that helpful but wish you all the best with it. I know how frustrating it can be.

---------

I just LOVE how Synthroid says it is temporary. Mine was not. Even if it was - well you lose it and their words read like hair grows back in so easily & quickly - no big deal.🙄 I am tad bitter, ignore me.🤭😁

[Juliet_22 in reply to Litatamon]

Thank you for your input, we'll get through this!