Hair loss from Levothyroxine

[shellyyyy]

I started out on 25mcg Levothyroxine. Felt great about the 2nd month in, after the 3rd mo, I started feeling as exhausted as before.  Had blood work done again and the Endo doc said my #was still a little lower than she'd like, so she put me on 50mcg Levo. I feel no better whatsoever.  Pathetically drained, no energy, always tired, and NOW I am experiencing large amounts of hair being shedded in the shower especially.  It is disturbing how much is lost in the shower.  I can feel that the volume of my hair has been lost and it also feels like straw, it also isn't curling and defining as good as it used to (I have naturally curly hair).  I am not at all happy with this and am just afraid it will keep getting worse.  On the insert of the meds it says hair loss is a side effect but should stop once you become accustomed to the meds.  Well, 8 months later, still losing hair just as rapidly.  My Endo doc said this is a side effect and thought nothing more of it.  She also only treats based on TSH and T4 numbers.  She does not want anything to do with T3 and I am sure would not prescribe the natural thyroid meds which I don't even know if it would matter or not, and finding a doctor who will is also an issue.  I am seriously considering taking myself off the meds since I feel no improvement AND now that I am losing so much hair everyday.  I am convinced that my fatigue is thyroid because why would have I felt so great for one month when I started the meds if it wasn't doing something?  I have been tested for vit levels,sugar, etc. and everything is normal.  My recent TSH test came back normal as well.  I am starting to get very upset reading peoples comments about their hair loss from this medication.  I was NOT losing hair until I started on this medication about 3 months in, right around when I was feeling worse again.  I can't seem to find a doctor who will really help and I am getting so upset!  Helppppp!!!

[gimel]

I don't know that you will get a response from Shellyyyy, but the rest of us would be glad to try and help.  If you would tell us about any other symptoms you have, and post your thyroid related test results and reference ranges, we can try and assess your status.  Also, have you been diagnosed with hypothyroidism and if so, what is your thyroid medication and daily dosage.  If tested for Vitamin D, B12 and ferritin please post those results as well.

[Linziloo83]

Hi,

I wanted to find out if your hair loss syptoms have stopped on the armour? I have the exact same issue as u and am desperate to find out what I should do.

[jacrjacr]

it is not uncommon for estrogen and progesterone to plummet in 40s causing a hormone inbalance which also irritates the thyroid so getting your testosterone, progesterone and estrogens tested may help. My bioidentical horomone gyn dr told me this last visit my estrogen was too low and my testosterone was in the high area and my thyroid tsh was too high and I had hair falling out too...interlinked....more synthroid needed, topical estrogen and keep taking the progesterone. I already noticed my sleeping is better in one week, my stomach is less bloated , and I am not as hot at night already. I didn't have hot flashes but I was hot at night even when the room was cold. I was only on progesterone before test and synthroid....Just know hormones start changing way before menopause and can cause all kinds of problems...that is what led me to a bio identical dr and also bio identical drs have no problem with natural thyroids like armour etc unlike most doctors in my experience. Just a thought to think about...If someone is on birthcontrol, you are on hormones already because that is what they are but with bio identicals creams and gels bypass the liver , each one is individually dosed according to lab test, not one pill with all in it. I always test tsh, free t3 and free t4 and a  hormone panel, d3, b12,

[summerlilt]

Hi, could you please recommend a good Endo doctor in the Allentown-Bethlehem-Easton area? I live in PA and the Zip Code is 18020. Right now I'm experiencing what Shellyyyy had described in her postings. I had my right side thyroid gland removed in October 2013. I never had an Endo doctor. My surgeon and my family doctor prescribed four blood tests for me after my surgery. Dates and results are (12/2013 TSH 11.89, T4 5.3), (01/2014 TSH 10.21, T4 5.1), (I started Levothyroxine 25 Mcg in March 2014, blood test of 04/2014 TSH 3.99, T4 6.7), (07/2014 TSH 7.62, T4 was not tested). I have talked to my family doctor about testing FT3 and FT4 and was told TSH was the one that matters. I hope I can find a good Endo to get my situation under control. Thanks!

[shellyyyy]

A lot of women go off BC pills but I haven't heard of the hair loss thing.  Are you saying it happens when you go off of them if it's during menopause?  Because if that is the case, I WILL go off them now and not later.  I am 45 right now...and that is the last thing I need to worrying about is losing the rest of my hair like that  :(

[shellyyyy]

Ughhh...!!!  I just didn't like how the doctors pawn it off like it was nothing...no biggie losing half of your hair  :(

[shellyyyy]

Oh God don't even tell me that.  Maybe I should go off of them now??  I was actually thinking about it.... ??  Thank you for the #'s on the Ferritin level, I didn't know about any #'s to use as a reference.

[dn560]

I know the feeling I been on 50mg also for like 1yr and 3 months hair shedding lik crazy, tired all the time and not to mention the brainfog I myself want answers

[denisebluebird]

In regards to birth control pills, beware of massive hair loss when you have to discontinue using them around the age of 51 , at menopause.  This happened to me and then came hypothyroidism plus drop of estrogen - the triple whammy of hair loss.  I had the most incredible hair.  Also, could expand forever on hair loss.  Must have ferritin above 70 and best to be above 100 for re-growth.

[goolarra]

You're right, it won't help you with this doctor, but at least you'll have a better idea of what's going on and what you have to look for in a new doctor (or if you have to look for one).  

I don't think there's a way to get the meds prescribed online, and I would never encourage anyone to self treat, but I wouldn't be being honest if I didn't say that I think you can get just about anything you want online from somewhere in the world without a script...quality, not guaranteed.  

There are lots of online labs, but I know some members who have had good luck with healthcheckusa.  Not all of them are available in all parts of the country.  You pay for your tests, and they send you to a local lab for the draw.  They then send the results directly to you, no doctor involved.

I just think you'll be more prepared to advocate for yourself with more information, and I'm worried about your high TBG, which I think could be making your TT3 look a lot better than it is.  

If you find a lab that's good for you and pick out a test, send me a link, and I'll take a look at it for you before you buy it if you'd like.    

[shellyyyy]

If I order it on line though...that won't help me unless I can find a doctor who will be willing to use that information to prescribe medication, correct?  What I mean is, there isn't a way to get the medication prescribed on line is there?  I really don't know anything about how on line testing works like that.  I would be interested in knowing more...thank you.

[goolarra]

When I was first diagnosed hypo, my FT4 was well below yours.  It was 0.4 (0.8-1.8).  I still functioned; I couldn't stay awake if I sat down for more than about 10 minutes...

Total T3 measures the total amount of T3 in your blood.  However, most of that T3 is chemically bound by protein and useless to your cells.  FT3 tells what's not bound (free) and available to your cells.  TBG is one of the things that binds thyroid hormones.  TT3 and FT3 don't correlate well, i.e. someone with relatively high TT3 can have low FT3 and vice versa.  With TBG high, the discrepancy could be even higher for you.

You can order FT3 online.  You really need FT3, FT4 and TSH on the same draw, and that's about $85.  If you decide to pursue that and need more info, let me know.

Thyroid can be very frustrating.  As you increase, you'll have good days and bad days, but the closer you get to the dose that's right for you, the more good ones there will be.  Blood work in March is good timing.  See how you feel by then on your increase.

[shellyyyy]

No not at all.  I've been on the same BC pills for many many years.

[goolarra]

That's why your TBG is high, then.  High estrogen levels raise TBG.  Any changes in your BC script about the time your thyroid started acting up?

[shellyyyy]

yes, i'm on BC pills, have been for a very long time

[shellyyyy]

Do you know if you can get a Free t3 test somewhere on line or something?  I would be willing to pay for that if it wasnt too much.  Would that help tell more?  Not that it will matter as far as the doctor goes because she say no on the Free T3 when I asked her.  She said Total T3 only.    So what are you saying about the discrepancy between the TT3 and FT3 exactly?

I go again in March for labs and for another sonogram on my thyroid, because there was a 4mm mass.  

[shellyyyy]

I almost said also that I thought I saw a little less hair loss in the shower but today I had a pretty good amount still  :(  I also am very sluggish and worn out feeling today, exceptionally tired and for no apparent reason.  So I guess there goes that theory.  If my levels are low/normal, I just cannot image how someone must feel being worse than that.  I feel like I only half live as it is with my levels at what they are at.  How the hell do they even function at all??  Crossing my fingers.....please o please let something help.... !

[goolarra]

Are you taking other meds?  BC pills?  

Your FT4 is at about 25% of range, so it's low/normal to low.  Because thyroid test ranges are so flawed, anything below 50% can come with hypo symptoms.  Unfortunately, your doctor tested TT3, rather than FREE T3.  Considering your TBG level, that's not a good thing.  Elevated TBG (which is a measure of how much thyroid hormone is chemically bound and unavailable for use) could cause a big discrepancy between your TT3 and FT3.

I'm glad to hear you're working on iron...that can cause hair loss, too, and I'm glad you got an increase...very conservative increase, but you're on your way.  

When do you retest?  

[shellyyyy]

TBG                         36.7            13.5-30.9
Thyroglobulin AB       <20 IU/ML  <20
T3 Total                    152              76-181
TSH w/Free T4 RFX :  
                TSH          3.0600         0.4000-5.0000
                F4             1.08            0.80-1.90

Ferritin                       30.10          5.00-148.00

Iron Deficiency Profile:
               FE              99.00        50.00-212.00
               TIBC           486           250-400
               % SAT        20 %         15-50
               UIBC           387           155-300

There was also a pages of tests for CBC w/o Differential...which I'm not sure what that is other than I think it's some kind of a blood count.  If you need to see that let me know, but there are several of them I didn't type out.  It looks like all of them are within range of their range listed.  I also had copper and zinc tested and they look within range too.

I'm not exactly positive how to read some of the other results to really understand it and where I might be at with it.

I got a call from the doc office and she said my thyroid tested low/normal and my iron a little low.  She upped my Armour from 15mg to 30mg and told me to switch them up every other day.  15 one day/ 30 the next.  And I have also started on Iron supplements.

I may feel slightly better....still tired but I think I have been very slightly better.  If I don't take a nap during the day I am usually totally exhausted by bed time.  But I guess not taking a nap during the day is a start.  

Please let me know what you think of my current dosage and test results.  Thanks!

[goolarra]

I think we've all told you that between July, when you started meds, and September, when they were raised from 25 mcg to 50 mcg, your situation did not improve at all.  In fact it got worse as evidenced by your FT4 going down and your TSH going up.

Your hair loss would only subside if your FT3 and FT4 levels went up, which they did not.

We're all working on very little information here because your doctor won't test adequately.  You've barely started meds, and it's been almost 5 months since anything but TSH was tested.  Trying to mange meds with nothing but TSH is a recipe for failure.

If your doctor won't test properly, you might consider getting the proper testing done at an online lab where you don't need a doctor's order and results are sent directly to you.  Last I knew, FT3, FT4 and TSH were about $85 altogether.  Having those numbers would make it a whole lot less of a guessing game.

[shellyyyy]

or better yet, will it go back to how it was WHILE being on the medication?  I am finding it very hard to believe that it will ... I just don't know what to do here.  I hate to keep repeating myself, but I don't need more hair falling out....i've lost enough from this medication.  I'm afraid to take a shower anymore to look at the hair that comes out and then having to try to do something with it afterwards...it's like straw and stringey and dry and lost a lot of its natural curl.  That alone is very depressing.  I've been losing hair now since July.  The doctor said it should have subsided after about 3 months, but it's still going strong coming out.  Dont' know which way to go with things...

[shellyyyy]

I had to read this a few times, but I found it helpful.  It made a little better sense to me.

So I wonder if now I will be re-shocked by being on a lower dose again?  I wonder if she should have started me out higher?  I have been scared to death to get on a higher dose thinking that because when I went on the higher dose is when I started losing the most hair and figuring that upping it would just continue that.  I did not at all try to sway the doctor about what dosage I thought I needed...that was all her call.  She actually didn't want to go higher because she said a couple of times that too high a dose will sometimes cause hair loss too.  I think she was somewhat thinking I may have been dosed a little too high.  All I know is, if something doesn't get this hair problem under control, i'm going be looking pretty nasty if it keeps up at this rate.  I don't know how long to give it as far as the hair issue before I decide to either let her know, or just take myself off the medication totally.  I was feeling bad before this, that part hasn't changed but now I have 1/2 the amount of hair on my head  :(  I just wish I knew which was the right way to go with it.  I wish I could get a firmative answer that I am headed in the right direction or not.  I feel like it's just guessing and not getting a real solution, and considering the fluctuation in my labs, the no results I've been getting between feeling this way and hair loss, I really have to wonder if I should have ever started at all on medication.  

If I were to just go off of it....would my hair start filling out again do you think??

Thanks so much!

[flyingfool]

You are on a STARTER dose of anything no matter how you look at it.  Starter doses are just that. a starting point.  From which almost everyone increases.

To give you some perspective as far as dosing.  Everyone ends up at different levels, some only need to stay at the starter dose but that is rare  others need what seems like huge doeses in order to get to feel well.

For context/example.  A starter dose of T4 med is usually about 25 mcg, and for Nadtural Dessicated Thyroid (NDT such as Armour or nature Thyroid etc) it can be as low as 1/4 grain to 1/2 grain (1 grain is about 60 mg) so a common starter dose of Armour would be about 15 to 30mg.  

From there many people who are on T4 only it is not uncommon for them to end up at 100mcg to 150mcg or even more.  And for NDT many people will be dosed in the 1 grain (60 mg) to 3 or even 4 mg (240 mg).

So as you can see from this, that you are on a VERY low bottom end starter dose.

Since you are still HYPO symptomatic, and at very low doses, the odds are that you are UNDER medicated.

When starting medication, your body is "shocked" by the addition of the hormone, so it takes a while to settle down.  Just like a scared cat that sheds when shocked or frightened, so to the human body does this to a certain extent.  In the list of priorities the body has to take into account, hair growth is VERY far down on the piority list.  What this means that when the body becomes stressed, one of the very first things the body "gives up" is hair growth.

You body is stressed for not having enough thyroid, your body then most likely used the other endocrine system (cortisol) to help make up for this loss,  The body then sort of got used to that condition.  Well then you went and "shocked" it out of this so called balance with the addition of thyroid hormone.  The body reacted to this new stress by shedding hair, and it will or may continue to do that until the body adjusts to the new state.

This is exactly why it is always good to start out on a small starter dose, to help make the "shock" to be small, and each successive increase in dosage is also recommended to be done in small increments for the same reason.  That and also to monitor your response and blood levels so that you approach your optimum dose slowly without passing it and crossing over to "the other side" and into Hyper land.

This is just my opinion as to the whole hair loss problem.  It is seen frequently and the people that blame it on the medication usually tend to quit the medicine before your body heals and you will never feel well.

So hair loss if the first symptom often times to come, and the very LAST thing to return after you are optimized.  That has been a relatively common situation/experience for many people on this forum.

[goolarra]

I agree...definitely on the light side.