I feel like I should say: I’m not a doctor, what I say here is completely anecdotal and based on my experience. I am not advising anyone to follow what I’ve done.

As of 11/2021 I have been off levothyroine. When I tried to go cold turkey in 2/2020 I felt disgusting! I hadn’t allowed myself time to wean off, so I started back on it and began to research how to get off it completely. Basically I began cutting the pill in half for a few weeks, then I started to go a day without a dose a week, then two days, then three days and eventually just stopped. It took 4 months to wean off but I did it. Since then the shedding stopped and my hair is almost back to it’s original thickness 🙂 Yay.

After stopping levo, to my surprise I didn’t feel awful and when I went for my yearly, I half expected my TSH numbers to have improved. Well much to my surprise, my numbers went from 4.26 to 21.7! I really should be feeling awful, but I don’t and I don’t understand why I don’t. But because of the numbers my PCP prescribed Synthroid (BRAND) not generic, I picked it up from the pharmacy but I never started it.

I’m doing my own experimentation now. My B12 and D have always been way low or below normal and these two are vital to thyroid function. I’m now getting weekly B12 injections and taking a twice weekly, high dose D supplement (10,000 units each) I started this regime at the beginning of June 2022 and plan to have my TSH tested the beginning of September 2022, just to see if the numbers come back different i.e. lower. I’m also going to have my adrenal’s tested to see if they’re under active or over active and supplement if necessary.

All the stories here, break my heart. Hugs to all

I was on Synthroid for 35 years and at the beginning of 2021, I decided I’d had enough and I weened myself off of this merry go around!! Now almost 1 year and a half later, I am still having some brain fog and a lot of fatigue mostly. Plus I gained 40 lbs. My next approach is to change my diet to the Medical Medium approach (Anthony Williams’ books). I had all the symptoms you describe plus my thyroid shrunk. The doctor kept saying that the medication was for life and there were no side effects, very innocuous. Wow, that was so wrong! Almost 35 years later, I realized my hair was awfully thin (it is not genetic). So that got me started on the fake hair search. I became very depressed over my situation and I’m still dealing with some sadness. I feel I’ve lost my way but I’ve prayed on it and my intuition says to move on to a healing diet.

As I look back, I realized that for the most part, I never really felt great. I always had the symptoms you describe but I just put up with it. At this point I am determined to heal myself and I will not go back to a doctor for awhile or maybe never. Take it from me, don’t stay on the medication. You probably don’t even have a thyroid problem because the testing (I believe) is flawed. I’m sorry that I don’t really have an answer for you but I am trying to caution women to think before taking a synthetic hormone. And yes, I too am sensitive to vitamin supplements like Ashwagandha.

I realize you wrote this in 2020 so I hope you’ve found something that works. Take care.
Maria

In the past 5 years of being on Levothyroxine I’ve lost a lot of hair, used to be long, thick and wavy, now dry and very thin and I had to chop it off because it looked so awful. Too, I developed thin and brittle finger/toe nails that I have to keep trimmed or else risk them cracking below the nail line, eyebrows are nearly nonexistent and have no body hair to speak of. Meaning my underarm hair rarely grows, my pubic hair is very thin, I rarely need to shave my legs (maybe once a week). I developed Raynaud’s, exacerbated dry eyes, developed many food and medicine sensitivities, intolerant to cold in the winter or heat in the summer. The list goes on. This year I spoke to my PCP about switching to Armour or Nature Thyroid and she basically scared me off the idea, saying those two are not consistent in their formulation and they are often out of stock.

I’ve had enough, this week I’ve started the weaning process off the 50mg Levo (it’s the minimum dose anyway) by reducing the dose to 25mg a day. It’s been 4 days and I’m extremely lethargic and foggy but I’m hoping my body begins to adjust and regulate itself and in time I will be able to start a vitamin regime. That’s another thing, I have a huge sensitivity to all supplements. My Vitamin D is very low but I can’t tolerate taking a supplement. The only thing I can get is Vitamin B12 injections.

Prior to being diagnosed with Hypothyroid I had NONE of the issues listed above before taking Levo. I didn’t even know I had hypothyroid until my PCP decided to test for it. I’m going to give it a couple of months on 25mg to see if anything changes. Maybe my dose should be 25mg and not 50, who knows. I’m going to take control and get back what I’ve lost in terms of hair and health.

I share your concerns. Suffering from Hashimoto’s, I’ve been fighting hair loss for ten years. I finally had the situation quite in control when 4 months ago, I had to stop my previous levothyroxin med due to other bad side effects. I started taking Tcaps, the French equivalent of Tirosint. I was very hopeful… Since then, the other bad effects went better, but my hair has been shedding again, pretty bad. I’m quite desperate. Could it be a transition effect? Maybe my body has to adapt to the new med ? Does anyone here had a similar experience with Tirosint and did it get better over time ?
Thank you, and all my support from Paris !

You could be writing my story. Trust me, the synthroid is the cause of it all. The question is what to do? We need something to keep our thyroid in line but the medication is playing havoc with our hair. Doctors simply will not listen that it could possibly be this medication. Very frustrated.