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JenK update on Thyroid and my hair loss

Discussion in 'Women's General Hair Loss Discussions' started by Jenk, May 31, 2016.

  1. Jenk

    Jenk Established Member

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    So it seems that my thryoid medication is causing chronic TE. I tried Armor but nothing seemed to change and I know that Armor stopped working for a lot of patients after the company made changes to the medication a few years back. My old endo refused to try me on Nature thyroid. I got a new guy Dr Dennis Gage in NYC and he seems amazing. Very whole body oriented. He was fine to put me on Nature. The problem is that every single time I get a level of thyroid med in my body my hair starts falling out. This has proven true three different times now. Nothing else seems to matter.. not nutrients or iron or hormones or anything else. I switched to Nature a week ago and my loss is no different.

    I was not having loss for the last month because I had food poisoning and was put on antibiotics which inhibited my absorption of Thyroid med.. my TSH went to 10 and right a way my hair stopped falling out. Then I noticed it suddenly started again. I had my blood drawn and sure enough my TSH was at 3 and my T3 had gone to 5.4 which is too high. However the new doctor said that the T3 was not a problem and that when you take a T4/T3 med these numbers are common. Trying Nature thyroid was my last hope. Ive been on it a week and my loss is still high. When I took Synthroid but for some reason wasn't absorbing it I saw my hair loss stop in 4 days. Literally night and day. So what can I do? I can't not take some kind of thyroid med as I have autoimmune thyroid disease - but I just can not go though watching myself go bald again.

    I can't tell you how wonderful those three months were where I lost no hair. I got to the point where I could wear it down again. I was getting to not be afraid of showering or combing my hair. I thought this was all behind me.

    This Dr Gage does a ton of other tests along with thyroid.. like metabolism and adrenals and cortisol etc.. he does supplements etc, but even he keeps saying.. oh peri menopause makes you lose your hair. Well, maybe but I had cascading hormones for the three months I wasn't getting a level of Sythroid in my body and I wasn't losing hair. It's happened three times now that when there is no thyroid med in my body my hair stops shedding like crazy.

    I don't know how much the higher T3 could be effecting my hair but there is no way to take Nature or Armor and take less T3 - that I know of anyway- it's just all in one pill.

    If I have a period it will be between now and the next five days. This can make my hair loss go up a little but when I wasn't on thyroid medication I had a loss of like 35-60 per day and maybe 70 ONE day or so before a period. With Thyroid med in my body its like 90 per day and then it goes up from there - to like 120 or more for days.

    Trying the Nature Thyroid was my last hope. If it was going to help it would have by now. I am glad I am out of school right now because I've hit a wall. I am so heart broken.
     
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  2. Kelly7

    Kelly7 Established Member

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    You need to wait at least a month for your body and hair to get used to the new thyroid medication. Switching medications in itself can cause more shedding. I know it will take time to find what dose works for you but your tsh and ft3 readings seem a bit too high, so perhaps that is why you're shedding as well. Does your doctor think the thyroid medication could be causing hair loss or does he think it's due to peri-menopause? Do you have other symptoms?
     
  3. Jenk

    Jenk Established Member

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    My Trichologist agrees with me that every single time my thyroid has been low (like 5-10) meaning that no medication is affecting my body - the hair loss stops INSTANTLY. The old thyroid doctor kept trying to throw HRT at me. WHY? Yes I am peri but I have no bad symptoms yet such as night sweats or hot flashes and other doctors and trichologist agree that HRT is not a good idea unless you have symptoms you can't live with. It seems that having a level of thyroid med in my body immediately causes shedding. When we switched me from Levothyroxine to Synthroid in a matter of 4 days the shedding stopped. However we didn't realize that somehow I wasn't actually absorbing medication. My Thyroid was at 10 for a few months and I had no shedding. We upped my medication and as soon as my thyroid hit 2 I had shedding right away that didn't go away for several months. It went away when my thyroid levels dropped again due to non absorption of thyroid med from antibiotics. It stopped for a month and as soon as my thyroid level hit 3 again the shed started back. So my hormones haven't had any affect on my hair. When my thyroid level dropped to 10 my FSH also skyrocketed right after a period - no hair loss. The only thing that has caused shedding time and time again is having a therapeutic level of thyroid med in my body.

    The new doctor said that the T3 at 5.4 was ok even though the actual lab sited it as too high. I don't know what to think about that. However, if you look at all the tests I was having (and I was having them every week because I was supposed to be cleared for a surgery and we were watching my thyroid levels to try to get them to a normal level where the hospital would declare me fit for surgery) and the TSH was 10 then 8 then 6 and NO hair falling out. Normal shedding of maybe 50 per day and just by watching how much hair I was losing I could tell that my thyroid level was going to read to high. When my TSH is reading three or more my hair just sheds like crazy - and it will keep going that way- it doesn't settle down or stop.

    I have no clue what to do about this. The choice is that if I have thyroid medication that elevates my thyroid to 3 or more I am going to shed like crazy until I am nearly bald.

    - - - Updated - - -

    Basically after 2 years of shedding the trichologist said that my hair loss isn't Androgenetic Alopecia loss but TE and caused by some kind of trigger but we didn't know what. Now it appears we know. I had hoped that a different kind of med might lessen the loss as many people say Synthroid and or Levo caused their hair to fall out but Nature Thyroid didn't. She agrees at this point that the trigger is the thyroid med - but we were hoping that Nature Thyroid would work on the thyroid without causing shedding. So far that's a big no.

    Yes I could take HRT and by some of the reports here there is no guarantee that HRT is going to make anything any better (for some women it's made it worse) but even IF it did make it better you can't take that stuff forever - then what? If the Thyroid med is making it fall out and the extra hormones are masking the loss I am right back to the same problem in another few years.
     
  4. sheeny

    sheeny Established Member

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    Wow, Jen. So do you mean when your tsh increases, then your hair improves? Are you hypo? I know you are so frustrated with this, but the hardest part is figuring out your trigger. That is huge. I hope you can figure out a solution that works for your health & your hair soon.
     
  5. Kelly7

    Kelly7 Established Member

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    Do you have Hashi's? It sounds like your thyroid levels are fluctuating quite a bit. How do you know that you weren't absorbing the medication? Perhaps you needed a higher dose? A good tsh level is actually between 1 and 2 or even lower. If someone is optimally medicated, their tsh should be suppressed. If your ft3 is slightly above range, then that's okay as long as you don't get hyper symptoms. Do you know what your ft4 is?

    I don't think thyroid meds are the cause of your hair loss. It sounds as though you haven't had optimal thyroid levels...at least not for a steady period. All of those fluctuations are probably causing your hair loss, along with peri-menopause.
     
  6. Jenk

    Jenk Established Member

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    I know it sounds weird but I have been watching this for 2 years like a hawk! The ONLY time my hair stops shedding is when I don't have thyroid meds in my body. As soon as I have a thyroid reading of less than four my loss kicks in immediately. Synthroid and Levo are known for causing hair loss. And when I was on Levo for some reason I could not get my iron up. Supplementing with the best supplements money could buy for more than a year and it wouldn't move. As soon as I got off Levo my ferritin went up and stayed up consistently. I know my thyroid was low because the test said it was 10 but no one gave me the test for over a month because my doctor had left suddenly and no one looked at my test results. So between October and the end of December I had no idea my thyroid was reading ten. My FSH had skyrocketed but there was no hair loss - on the contrary my loss was almost none for three months. Then the new doctor told me to take the medication without even anything but water in the morning.. my TSH went to 2 and within a matter of 2 days I started shedding again for several months the entire time my TSH was in good range. That is when I switched to something natural hoping for the shedding to stop. It didn't. Then, as I said before, I got food posioing and due to antibiotics my body wasn't absorbing the med optimally and my TSH went down to 5 and then 10 - INSTANTLY my hair stopped shedding and went back to normal. Now we have it back up to 3 and two days before I actually got the blood test results I knew my TSH was going to read closer to 2 because I started losing hair again INSTANTLY. Sure enough the TSH was 3. The whole time it was at 5,6 or 10 NO HAIR LOSS AT ALL and I was able to start to regain my hair. Yes I have auto immune thyroid. So - now my TSH is 3.1 and my hair is shedding like crazy and it stays that way for as long as my TSH remains within that range. If it were just due to my TSH changing you would see hair loss with the drop to.. but that doesn't happen. It gets better. When we recovered my number from the three months that it was 10 and I had no shedding - my numbers were withing range from January to the end of March and I had constant consistent loss just like before. Thyroid numbers dropped and the loss stopped instantly. So the answer, strange as it is, seems to be - take thyroid meds and be bald or stop and be horribly sick but have hair. :sobbing:

    - - - Updated - - -

    Right now my FT 4 is too low.. but this is on Nature Thyroid - I just started a week ago. TSH is 3.1 TT3 is 1.3 and Free T4 is .6 (lowest is .8) Hair falling out like crazy.

    - - - Updated - - -

    Sheeny - I don't know what to do. Stop taking thyroid medication or under medicate myself to keep my hair. I have finally hit a wall tonight. After 2 years of dealing with this.. and three months of thinking I was out of the woods and getting my hair back only to lose it again. I am finally just done. I have no more hope.
     
  7. Kelly7

    Kelly7 Established Member

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    Where was your ft4 when you were on Armour and Synthroid? Your ft4 is very low so no wonder why you're shedding. I know it's because you just started Nature Throid though. If I were you, I'd forget about where my TSH is and pay more attention to finding my optimal levels which are usually in the upper 25-30% of the reference ranges. Your ft3 can be a little over the range since you're taking a t4/t3 combination. If your heart rate is often on the fast side, then you know you're most likely hyper.
     
  8. Jenk

    Jenk Established Member

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    I will have to look up all of this. Tonight I had a flare up of shedding like I haven't seen in two years. Devastating.. lost about 170 hairs. You try to talk to people and they say annoying stuff like.. but your hair looks good. You try to explain that with shedding at this rate it wont look good very soon and they just don't believe you. I am supposed to go in for a surgery to see if I have endometriosis - I don't think that this is causing the blood work that is all over the board with my hormones and hair but.. my mom seems to believe she heard the doctor say it does. I am lost and no one really cares.
     
  9. Kelly7

    Kelly7 Established Member

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    I'm sorry you shed the most hair in two years. Do you have regrowth? I would be thrilled to shed 170 hairs (on a wash day) but I usually shed about 250. A few days ago, I shed about 500 hairs which was the most since April 2015. I seem to have less and less regrowth and finer hairs. Are your periods really heavy? I wouldn't rule out endometriosis as a cause of hair loss! You probably shed more because your body hasn't fully adjusted to the Nature Throid yet. If I wasn't taking Levothyroxine for ten years before my CTE began, I'd think it was the medication as well.
     
  10. Jenk

    Jenk Established Member

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    Nightmare situation. So I am supposed to go in for the surgery to see if I have endometriosis. Got my blood work back Monday(last monday) and it was 13 - the TSH!!! Had it retested on Weds and that test said 25! My old endo told me in April when I had strange blood work like that, that it's impossible to go 10 points in 2 days so one test had to be wrong. However, here we are again. I got scared over the past two days and took my nature thyroid down so my thyroid test tomorrow morning is sure to be even worse and I wont be approved for surgery. The next date is in September but I have school then and I have 6 classes so I don't know when I could do surgery if I don't now.

    My trichologist seemed to think endometriosis might have something to do with my hair but I don't understand the connection. I am told it doesn't cause disturbances in hormone levels or FSH. Every time I up my nature thyroid the hair immediately falls out like crazy. Then again I also have upped it and coincidentally had huge hormone surges on that day. My body seems to be trying to have a period but cant. My hair started falling out like crazy again tonight after lowering for a few days. So is it the hormones or is it the Nature Thyroid? It's just terrifying to brush your hair and have 70 hairs come out. It's like brushing my cat.. it just keeps coming out. It's starting to become visible loss again-- like where its thinning and going inward with the loss from both temples.

    I am totally lost. I don't know now whether to stay with a T3/T4 combo or go back to Synthroid or if this is from hormones or both. I highly doubt I am going to get approved for my surgery on Monday. Physically and emotionally I feel so horrible right now. Everything I worked so hard to gain is going right out the window and I am back to square one or worse. I think the total loss today was around 160-170 again.

    So which med is worse for causing hair loss Sythroid or Nature Thyroid/Armor?
     
  11. Jenk

    Jenk Established Member

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    Had my surgery Monday- turns out I had endometriosis- they removed it. Literally the moment I woke up hair falling out everywhere! Even Liz felt this was impossible but the first day I shed 300 and today 250 with now sign of letting up. I also heard they might have given some steroids during surgery and I've felt unable to sleep and had horrible headaches and strange anxiety followed by bouts of 70 hairs coming out every 6-7 hours. I'm Totally lost. I thought nature thyroid would be good for me as t3 is better than Synthroid if u r losing your hair from thyroid med. now I've lost everything I've gained. I've literally never ever seen my she'd be this intense. I'll be mostly bald by Monday if this doesn't stop. I'm Trying to find out if they gave me a steroid or not. I haven't felt right neurologically since last night. I don't do well with steroids and I told the doctor before the surgery and he said- oh no this is so little. This is so horrible and actually even my trichologist is at a loss now so I feel like I've fallen down the deepest hole ever. Help anyone?
     
  12. Wolf924

    Wolf924 Experienced Member

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    Hi Jenk. Gosh I am sorry that this is happening to you--you have had a hell of a ride.

    You are not going to like what I have to say, but since you asked for advice, here is mine. From what I know, and my father, an OBGYN for 40 years has confirmed and my mother, and RN who specializes in hormones and pregnancy, endometriosis can cause incredibly strong hormonal imbalances that absolutely can lead to hair loss, and in some cases (not all) infertility. There is much evidence supporting this--if you google it you will be able to read some interesting information. I think your ND is spot on to see the connection. I personally underwent testing for this a few years ago because I had pelvic pain but I did not have it. My aunt does have it however, and I know that it can run in a family--and in some cases appear on its own. Hormones are the #1 reason for hair loss.

    The good news is, I know that you can treat it, and certainly relieve any pain it is causing. And with hormonal hair loss, I always think there is hope if you identify the cause. I am assuming you had a laparoscopy? (that was the surgery to check the lining of the uterus) Did you have an endometrial biopsy? If so, then did you get put on anesthesia? Anesthesia as you know can cause increased shedding as well.

    Obviously I have no medical degree, but to me this seems like an incredibly strong link for you and one that I would pursue if I were you.
     
  13. Jenk

    Jenk Established Member

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    Yes they found endometriosis and removed it! However - they gave me meds in surgery they shouldn't have- leading to me being very sick the last few days. Here is the break down of what happened. I informed them I can't have steroids or Reglan due to very bad side effects.. I knew something was wrong on Tuesday after the surgery on Monday...

    So I got a hold of the anesthesiologist - The doctor /surgeon only sent me an e mail saying he didn't think they used steroids. Turns out the anesthesiologist who was a SUPER sweet man- told me he did because there was nothing in my chart that said not to. He also used Reglan which was on my NO list. He said that was also NOT listed in my chart. The only drug listed as a No drug was celebrex because I have an allergic reaction to it. I told the doctor before going into the OR specifically that I can't tolerate either steroids or reglan. This was the reason I can't do trigger point injections for my back. I wont sleep for weeks, horrible depression, really bad anxiety - and of course hair loss. The anesthesiologist was so upset. He said he understands exactly what people with sensitivity of this drug go through and he never would have given it to me if he had known. I contacted the surgeon again (by email, he didn't call me) and in the email he said that he had NO control over what the anesthesiologist does. ????!!!! I got very upset at this point and said to his secretary "YES HE DOES, HE IS THE DOCTOR!" The shedding has slowed- but I have been sick from it.

    I don't know the exact numbers of T3/4 just that they were in normal range. 3 is the active thyroid and I think 4 is the unprocessed hormone.

    5 days and I am still not well and very very behind for what I need done for school and trying not to stress. All drugs that I had problems with were very clearly explained twice minutes before going into the OR. THey didn't prescribe anything for the side effect of anxiety from steroids figuring it would be over by now.. but it's still hanging in there a bit. Yesterday was the first full 5-6 hours of sleep in several days.

    - - - Updated - - -

    I kept asking all my doctors IF the endometirosis could cause hormone flux and the answer was NO unless it has invaded the ovary. Still I have these CRAZY abnormal female hormone readings. Since the surgery I have had some sweating for the first time. I don't know if that is menopausal or if it's because I am swelled to 2x my size and it's hot - or if having the lesions removed and messing around in there caused some disturbances. This surgeon is supposed to be an expert at removing and uses DaVinci robotics for removal. Was it worthless to even have it removed because I am so old anyway? No one really told me much. You get a post op paper and they say they will see you in six weeks. That's it. I have to wait six weeks to know anything? He makes me feel like I am bothering him anyway so who even wants to ask him. Other than pain I don't know if this does anything for me at all. I hope you are right Wolf because this could explain a few things but other doctors have all said endometriosis doesn't cause hormonal imbalances unless it's invaded that ovary. ????

    My shed went up today again. For two days it was low.. suddenly now 140. I felt like I knew the pattern before and how to control it and now I just feel lost and hopeless.
     
  14. DonnaL

    DonnaL Established Member

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    Hey Jen! I haven't been on here in a while and came back looking for something different and your post caught my attention. As a fellow CTE sufferer, I feel your pain babe. 5 years of CTE here with very few breaks and constant CTE with no breaks for about a year and a half. I'm looking for wigs and toppers again because I have... eh... maybe 30% of my hair left? It's bad. My husband even approached me about it the other day because he thought I would want to know that the hairstyle I was wearing wasn't really "working" for me anymore :/ Anywho... part of my CTE battle is an unfound trigger, but I also have Androgenetic Alopecia starting to rear it's ugly head and may also have a little Alopecia Areata. SO I've got hairloss at all angles. I do know that I"m extremely sensitive to any changes in hormone levels and any time my Levothyroxine dose is changed it brings a shed a few months later. I have a son who is 20 months old now and my Levo dose was changed 47 times from conception to weaning. I went through so many back to back sheds :/ My TSH has been on point at 1.48-1.52 since December though and I'm still have episodes, so I'm at a loss now for what to blame it on. To make matters worse, I suspect that I also get sheds from fevers and illnesses because the timing seems to line up. Can I ask you something... Do you get Beau's lines on any of your nails? I ask because my thumbs are pretty much a ripple of horizontal dents and each one marks a shed when the dent is about 2/3 up. I can predict each new TE within a couple weeks of each other :/ And my sheds bring scalp pain too which is just double awful. Anyways, I just wanted to share my experience with hormonal shifts and CTE sheds. If your thyroid levels are bouncing around then I'd bet that has at least something to do with your recurrent CTE shedding. Unfortunately I'm pretty sure surgery (wisdom teeth) caused one of my sheds too and I know anesthesia can trigger them, so you may be in for another shed in a few months. I empathize with that feeling of hopelessness hun, believe me I do. Utter defeat over here.
     
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  15. Jenk

    Jenk Established Member

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    Yes I have ridges in my nails if that is what you are referring to. Those have never gone away. I was finding that my shed was normal when my thyroid was a little on the low side. Levo has been the worst medication so far because it also held back my iron. I couldn't get my ferritin level up with that medication and I would never have known that if I hadn't stopped taking it.

    I did the surgery because we were pretty sure I had endometriosis - and I did - and it can grow in some really bad places. Some have said that will level your hormones and most have said it has nothing to do with it. I knew that surgery could trigger a problem again but there were two drugs I told them NOT to give me - Reglan and steroids. I have horrible neurological reactions to reglan - tardive dyskinesia and the steroids will throw my system into the worst possible hell. Anxiety like a cold poison and complete inability to sleep, severe depression,hormonal swings... I told the staff and doctor and somehow I was still given these drugs. The surgeon claims he has no control over what the anesthesiologist gives me - but I informed them. The poor anesthesiologist is so upset. He said if my doctor had just told him he could have changed it. When I woke up hair was all over the place. I can't believe I still have hair covering my head. I am looking into suing the surgeon. Not just because he didn't tell them but basically he's not even spoken to me - only through his secretary via email or phone. I thought I was doing the right thing for myself and making everything better but all I succeeded in doing was making it worse. I see no plus side to having had this surgery. I can get scalp pain from sheds too. My Trichologist says I dont have scarring alopeica. Yes my thyroid has been going up and down from trying medications other than T4 only. However my sheds seemed to stop the moment my thyroid is more than 3. Meaning 4,5,8 etc. However I had a strange jump just before the surgery where my TSH went to 26?!!! we had to quickly double my medication in order to do the surgery. HOwever - steroids are SO SO SO bad for my body that I know this loss is absolutely from my body being thrown into a hell from a combo of meds that are toxic for my body.. reglan ( a med so horrible I don't know why anyone would ever use it.. ) and steroids. I am taking some L theanine to try to help any cortisol levels that might be out of wack. My endo tested me Monday morning for adrenals - cortisol- TSH- sugar etc.. I couldn't face the female hormone tests right now.. too depressed.

    It is so hard to get your hair mostly back and then watch it all be taken away again. I am now going on 2 years of dealing with this. THank you for listening.

    PS you mean the lines on your nails are ridges that go up and down- or across? mine go up and down. I supplement but they never seem to get better.
     
  16. Poorva

    Poorva New Member

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    Hair loss due to thyroid

    When there is any Chemical or hormonal imbalance problem occurs, it may result due to thyroid disease which will affect you weight, mood and hair loss.

    Symptoms of Thyroid

    · Mood strokes like anxiety, heighten emotions, nervousness, irritability
    · Person who is suffering from Thyroid is not able to survive in hot and cold climates
    · They feels drowsy and sleepy initially and later they becomes habitual to sleep much
    · Fluctuation in weight like some of them loose weight whereas some gain weight
    · Abnormal mensuration problem
    · Muscle pain

    Prevention

    You should consult with a doctor first rather than starting any kind of herb
    There are some supplements that help you to get rid from hair loss:-

    1. Vitamin C & E: - We suggest you Vitamin C & E that doesn’t mean you start taking only those supplements who has Vitamin C & E in it Excessive amount of anything will affect your health. Vitamins don’t directly trigger your hair growth but they can be a major contributing factor for health hair.
    2. Amino acids: - According to doctors L-lysine and L-arginine can trigger hair growth. You can find amino acids in our daily life products poultry, legumes and fish
    3. Evening primose oil: - It can also help you to stabilize your hormone level and prevent you from hair loss

    You need not to worry from thyroid it can be cure naturally, if natural remedies not helping you much you can take help of any doctors they will provide you right treatment for this.
     

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