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Major hair loss. Having a nervous breakdown pls help

Posted , 4 users are following.

Cecelo
Cecelo

Hi I've posted about my hairloss about 4 months ago when it first started. Since then I've gone back to my endo, got bloodwork done for my iron/ferritin, vitamin D, hormones etc. Saw a dermatologist twice. All blood work came back normal and dermatologist diagnosed me "likely" with telogen effluvium as a result of my graves (insult to my body, sudden major weighloss and fluctuating thyroid levels). He also said it could be a side effect of tapazoid but my endo has never heard of this.

Derm said this could last up to 9 months IF it is in fact telogen effluvium and there is no guarantee that all the hairs will grow back. I just had a nervous breakdown. It's been 4 months and I see no signs of it slowing down. I've lost 50% of my hair, I'm starting to see bald spots diffused all over the head including the back of the crown. I am balding. I am also a 35 yr old female and as vain as this may sound, my hair was a part of my identity. I loved my hair. I loved getting it coloured and curled and cut and done and now I'm afraid to even touch it. I've been using thickening hair products and while it worked at the beginning I find that it is no longer useful because i Don't have much hair for it to even work with. I just had a nervous breakdown after washing my hair. All the hair in the drain and the floor and brush made my heart literally sink. I feel so alone and helpless I hate my life so much right now and often ask why is this happening to me? I've been taking vitamin D, iron supplement, biotin but NOTHING is helping. All I want to know is there is light at the end of the tunnel buT no one give me any answers.

Ever since I've been diagnosed with graves my life has gone downhill. I have no family history it just came on suddenly 6 months postpartum with my second baby and around the same time my dad suddenly passed away from cancer. With the graves, my blood pressure has been out of control and major hairloss that is taking my life away. I don't have any issues with my eyes but every day I wake up worrying about that too. My life is completely in limbo. If I didn't have 2 beautiful children and a loving husband I swear I would not have the will to live. Can someone please give me some advice or a positive outlook?

I apologize for this being all over the place but I am falling apart.

1 like, 18 replies

18 Replies

  • pat99554
    pat99554 Cecelo

    Posted

    It was like you described for me but I had to wait for things to settle down and my body's natural abilities to take over. People kept telling me to reduce the stress and increase the exercise or anything to keep you motivated and tell yourself you are ok.  It took about three years for hair to stop falling out and then things gradually started to setlle for the better.  Destressing was my major support.  I reintroduced the things I enjoyed such as reading, crotchet, running, swimming.  I took up a my own type of yoga and concentrated on breathing techniques to destress. I altered my diet, havent eaten out since.  For me it was a life changing event, it was a shock to my system but I am a lot older now and learning to deal with stress is not easy but doable.  By writing what you have written is probably one of your best medicines.  just keep going.

  • Guest
    Guest Cecelo

    Posted

    Hi Cecelo, sorry to hear that you are still having  to deal with hair loss. Your reaction is understandable, after all our appearance is a part of us. Not sure if you remember, I sent you a private message after reading your last post.

    After telogen efluvium most of the hairs are already in the shedding phase and are just loosely attached.  It would help you to stop worrying about the hairs that are still left. Otherwise your stress level will go up every time you  wash, comb, or even touch your hair.

    Instead treat yourself to a professional knotted wig. If you are in the UK you can get a prescription to help with the costs. It will help you bridge the time till your hair is growing back.  

    Btw, are your thyroid levels under control? And what is your thyroid medication and dose at the moment? 

      

    • Cecelo
      Cecelo Guest

      Posted

      Hi danR,

      Yes I remember your message to me and I took your advice to heart, I went and bought myself a real human hair topper but had to pay $1700 out of pocket, they are so expensive sad It helps but I'm still trying to get over the fear of wearing it in public. The first time I did, my friends bombarded me with questions about how different my hair looked and I felt so uncomfortable and felt more self conscious.

      At one point I thought my hair loss was slowing down but it never lasts long, 2 days later it'd start shedding like crazy again. So even when it seems better, I no longer have my hopes up bc I know it won't last long. Lots of emotional ups and down.

      My FTs are in range (euthyroid) but TSH is still <0.01 and endo is pressuring me to increase my tapazole, which makes no sense to me because she's putting me at risk for hypo. I also bought acetyl L cartinine as per Linda's advice but haven't started because i want to get my blood test done first so I can see if it works. My derm doesn't seem concerned about my hair, doesn't want To see me until another 6 months! Meanwhile he suggested I use rogaine "if it's bothering you THAT much". I hear horror stories about rogaines side effects too so I'm not going near it. Sorry again for the rambling, just want to know there is hope for me.

    • Guest
      Guest Cecelo

      Posted

      Hi Cecelo, this all sounds familiar to me. My wife felt very uncomfortable when her colleagues asked her about her hair.Why do we care so much about what other people are thinking? It is much more important that you are happy with your new look. Over time you will feel less self concious and get used to your wig.

      Btw, Rogaine did not work for my wife and caused side effects.

      You could try a low dose of Acetyl L-Carnitine to see if it helps push your TSH towards normal levels. I have been taking 500 mg per day for nearly 2 years. I have been off meds for 4 months and so far so good.

    • Cecelo
      Cecelo Guest

      Posted

      Oh wow, that's so good to hear you were able to get off meds. I will start with 500mg, don't want to risk any major side effects. I've read somewhere on this forum that someone's hairloss settled too after taking L cartinine or ALC, can't remember which one.

      I couldn't agree with you more about why we care about other ppls opinions so much. I guess i have to get over myself and my insecurities. Time is my only hope but my enemy at the same time.

      Thank you for understanding and your words. Hopefully the next time I post about my hair it'll be better news. There aren't enough information online about thyroid and hairloss so it's nice to hear positive outcomes from others.

    • madge1979
      madge1979 Cecelo

      Posted

      ... have you ever tried Biotin ...

      Have a read on google and see if you think it's for you ...

      I used it whilst using other supplements .. when my hair was falling out on head and body ...

      With good results ...

      nx🌹

    • Cecelo
      Cecelo madge1979

      Posted

      Hi Madge, yes I've been taking biotin 5000mg since my hair started falling out. I don't see any difference. sad

    • madge1979
      madge1979 Cecelo

      Posted

      Oooooooo...... then I can only imagine that all the other supplements that I use together must be responsible ...

      The effect on my hair was truly remarkable !

      After Carbimazole initially ..

      I suplemented ... apart from hair falling out .. the remainder of it was like cotton wool.... awful

      But .. it has returned to almost normal .. maybe a tiny little bit

      Less full

      But I thank god ... as it was

      Depressing me no end ..

      Mx🌹

    • Cecelo
      Cecelo madge1979

      Posted

      Thanks Madge, I need to hear as many positive stories as possible to keep my sanity and to keep me going in general.

      May I ask how long your hair shedding lasted and did it stop abruptly? Or did it gradually decreased?

      I find my hair texture overall has changed too. Before the shedding it was soft and full, it now feels very dry and brittle even though I'm still using the same hair products.

    • madge1979
      madge1979 Cecelo

      Posted

      Yep Cecelo ... just the same with me .. I lost all my body hair ..

      No eyebrows or eyelashes..

      I was miserable .. but also had all the other Graves' disease symptoms .. and severe too !

      I know Carbimazole worked quickly ..

      from memory ... I started feeling a little better after three weeks ... and after 3 months I'd say I knew I was becoming well ..

      6 months I'd say my hair was thickening up again and the broken hair was growing ..

      Got my hair cut short to the length of broken hair and

      Bought ONLY PROTEIN shampoos and conditioners

      That help restore the protein missing in my poor hair ..

      But I was and still am supplementing after just over a year later ...

      I'm so sorry you're still at that stage ...

      Luv mx🌹

    • madge1979
      madge1979

      Posted

      Oh !

      Meant to say ... I'm now euthyroid

      Thank God !

      Mx🌹

    • Cecelo
      Cecelo madge1979

      Posted

      So glad to hear your hair has grown back, that is also my fear. Shedding is one thing, I hope it grows back. sad

      I'm euthyroid at the moment but that's cuz I'm on meds and my hair she'd started after I went on meds.

      I'll update in a few months when I reach the 6 month mark. Fingers crossed for me.

      Thanks again for sharing your experience.

    • madge1979
      madge1979 Cecelo

      Posted

      ah !   I see ....   that is certainly a side effect of the tapazole then ..

      ... I have no knowledge of Tapazole as I took Carbimazole (uk) 

      im glad Carbimazole worked very well for me ...  and my hair

      improved once I'd started it.

      ... I'm sure once your antibodies are addressed with meds ,., you too

      will start to improve ... I've read so many people on here say that they

      saw huge improvements , once things started to .. re  .. balance .

      i know it seems forever, but you will start to feel more like your old self 

      again soon.......🌻

      luv Mx🌹

       

    • Cecelo
      Cecelo madge1979

      Posted

      Just thought I'd come back and comment after seeing my endo yesterday. I asked about side effects of tapazole so she did some research and the only documented cases she found is that tapazole (although extremely uncommon) can cause alopecia (patchy hairloss) but no evidence of telogen effluvium (diffuse hairloss which is what I have) This info is from my endo.

      Anyway, Thought I'd add this in case anyone who ever comes across this thread because theyre going through the same thing.

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