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Having a difficult day :(
Hey everyone!
I just needed to vent some and I think my hubby is getting tired of hearing it...lol. I was misdiagnosed in March 2008 as having hypothyroidism. My TSH at the time was 3.94. Normal ranges are 0.3 to 5.5 with optimal being a TSH of 1 (tsh= thyroid stimulating hormone). The doctor I went to at the time told me that the range has been decreased to 0.3 to 3.0 being normal. He started me on a medication called levoxyl which is a thyroid hormone. Alot of you know that a side effect of the drug is hair loss and thyroid conditions also cause hair loss. When started on this drug, I had absolutely no symptoms of thyroid trouble. Two to three months into taking the drug I noticed I was aching alot...mostly in my arms and legs....little did I know it was a MAJOR sign of trouble ahead. During this time I had become very active and had lost 30 lbs in a 3 month period by walking and some running 10 miles a day. So as you could imagine...I thought the aching I was experiencing was due to the exercise. I will never forget the day of December 26, 2008. I woke up this day in severe pain...aching all over...what I thought might have been the flu...boy was I wrong! I got into the shower and was in shock at the site of clumps of hair all over me. I called the doctor...went in to have some labs done and of course my TSH came back normal. After numerous visits to many different doctors...i was finally told...I should have NEVER been started on thyroid hormone. The doc also said that he believed that starting me on something I didnt need truly made my thyroid sluggish and my body was exhibiting severe signs of thyroid deficiency. After battling this horrific aching, lack of energy, depression and hair loss for 9 months and getting no where with traditional medication...I turned to alternative medicine. I started acupuncture 5 weeks ago. To my amazement, I was off thyroid medication after 4 treatments and feeling human again, the hair loss slowing WAY down, even noticed some new hair growth on my eyebrows, head and legs. Today is day 19 off of thyroid medication. Last night I started noticing the aching again. This morning I got in the shower and had a repeat of that horrific day in december...hair everywhere! WHAT the HECK????? My hubby told me tonight that was color looks horrible....I am sooooo tired of this! I am ready to shave my head and say to h*** with this mess. I am so sick of the ups and downs! I would seriously rather someone put a bullet in my head than go back on thyroid medication! I felt like a zombie on it! Sorry guys I do not mean to be venting this bad! I am just flat out ANGRY with that doctor that started me on something I DIDNT NEED! I truly believe that is what has messed me up so badly! I know everyone here is going through this...and I truly appreciate each and every one of you! You guys have been the support that I lack at home! My husband...just thinks hair is just hair. He has male pattern baldness....really doesnt effect him in the least. He usually shaves his head....says it is cooler that way. He is hot natured so it works for him. Thanks again everyone!!!!!!!!!
I just needed to vent some and I think my hubby is getting tired of hearing it...lol. I was misdiagnosed in March 2008 as having hypothyroidism. My TSH at the time was 3.94. Normal ranges are 0.3 to 5.5 with optimal being a TSH of 1 (tsh= thyroid stimulating hormone). The doctor I went to at the time told me that the range has been decreased to 0.3 to 3.0 being normal. He started me on a medication called levoxyl which is a thyroid hormone. Alot of you know that a side effect of the drug is hair loss and thyroid conditions also cause hair loss. When started on this drug, I had absolutely no symptoms of thyroid trouble. Two to three months into taking the drug I noticed I was aching alot...mostly in my arms and legs....little did I know it was a MAJOR sign of trouble ahead. During this time I had become very active and had lost 30 lbs in a 3 month period by walking and some running 10 miles a day. So as you could imagine...I thought the aching I was experiencing was due to the exercise. I will never forget the day of December 26, 2008. I woke up this day in severe pain...aching all over...what I thought might have been the flu...boy was I wrong! I got into the shower and was in shock at the site of clumps of hair all over me. I called the doctor...went in to have some labs done and of course my TSH came back normal. After numerous visits to many different doctors...i was finally told...I should have NEVER been started on thyroid hormone. The doc also said that he believed that starting me on something I didnt need truly made my thyroid sluggish and my body was exhibiting severe signs of thyroid deficiency. After battling this horrific aching, lack of energy, depression and hair loss for 9 months and getting no where with traditional medication...I turned to alternative medicine. I started acupuncture 5 weeks ago. To my amazement, I was off thyroid medication after 4 treatments and feeling human again, the hair loss slowing WAY down, even noticed some new hair growth on my eyebrows, head and legs. Today is day 19 off of thyroid medication. Last night I started noticing the aching again. This morning I got in the shower and had a repeat of that horrific day in december...hair everywhere! WHAT the HECK????? My hubby told me tonight that was color looks horrible....I am sooooo tired of this! I am ready to shave my head and say to h*** with this mess. I am so sick of the ups and downs! I would seriously rather someone put a bullet in my head than go back on thyroid medication! I felt like a zombie on it! Sorry guys I do not mean to be venting this bad! I am just flat out ANGRY with that doctor that started me on something I DIDNT NEED! I truly believe that is what has messed me up so badly! I know everyone here is going through this...and I truly appreciate each and every one of you! You guys have been the support that I lack at home! My husband...just thinks hair is just hair. He has male pattern baldness....really doesnt effect him in the least. He usually shaves his head....says it is cooler that way. He is hot natured so it works for him. Thanks again everyone!!!!!!!!!
Replies to This Discussion
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Permalink Reply by BaldGirlsDoLunch.org on
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Hi Donna,
It will get better and easier. So glad you've found this site of people who understand the ups and downs.
Your husband is learning new ways to cope with his feelings about it all too. It takes time. It's a big adjustment. Give him a lot of space and trust that the best way to connect with him will become apparent. It's usually not evident at the start of a big change like this. Talking, thinking, reading, web surfing, listening....we all have different styles for processing information and feelings. Use whatever approach is already his way of processing. And just simply saying, ' "I know you wish you could do more for my situation" brings enormous relief to all.
Hang in there...it will smooth out.
Thea
baldgirlsdolunch.org
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Permalink Reply by Heather L on
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Hello Donna,
Sorry you are having a rough day!!!
Curious- do you know if the doctor did a test for thyroid antibodies? I'm assuming since the doctor did a THS test that a T3 and T4 was also done? I have had Hashimoto's for 20 years. And I have been taking Levoxyl almost that long! (hard to believe! ) I do know from seeing different Endocrinologists over the years that some feel that even if the thyroid panel is NORMAL-- but the presence of thyroid antibodies is detected that they may start you on medication. Not all docs. will but the reason some will is because the believe the antibodies indicate your thyroid is starting to fail b/c of an autoimmune condition. so they believe it can be a corrective measure.
For me- all my tests were out of whack- so it was no-brainer! I have read the side effects of Levoxyl and know a risk is hair loss. However from multiple docs. I've been told it is generalized thinning and NOT the cause of AA. Birth control pills can do the same thing... so I think whenever hormones are manipulated an adjustment period of hair loss is possible....however most people once their bodies adjust the hair loss will stop. Then again little seems to be understood about triggers for AA...so who knows!
In my case I had AA before ever starting Levoxyl - so I know it had nothing to do with my problem. And interesting once I started it I had a 14 year remission with the AA. What happened that brought it all back again? and much worse.... Gosh I wish wish wish I knew!! No one seems to have a clue. I do suppose the hashimoto's condition is a player in all of it- lots of research supports a correlation. But what to do about that... no clue!
Have you had an ANA test? Sed rate?
Sorry again you are having such a tough time -- I sure hope they get it all figured out for you! and it does sound like you may need to stay away from Levoxyl!!! (if they want to put you back on med...there are other alternatives! )
Good luck!
Heather
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Permalink Reply by Donna DeHoog on
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Hey Heather!
The internal medicine doctor that started me on levoyxl tested a TSh, t3 and t4 but didnt test to see if I had hastimotos/antibodies. I also was breastfeeing my baby at the time too so my hormones were majorly whacked out. It wasnt until 3 months into the severe problems with hair loss, aching like crazy, cold as all heck that I went to go see an endocrinologist. At that time....I was told I didnt have the antibodies to my thyroid and should have never been started on it. That was around march of this year. I tried to stop the medication but when I did the aching would get worse and the hair loss would worsen as well. It was a catch 22 situation....I felt horrific on the medication and symptoms of hypothyroidism were severe and after about 3 days off the symptoms were awlful again. The first two days off...i would actually feel better. The last doctor that I went to told me...that putting me on the levoxyl truly made my thyroid "lazy" but I still did not have antibodies to it. UGH! I had no idea what in the world to do at this point. I turned to an acupuncturist and herbal therparist for help with much success until day 18 off....that is when I noticed the aching pain and my hair shedding again. The herbal Dr also prescribed a very specific diet to follow....I must eat an ocean fresh fish everyday plus kelp. It has been working beautifully. On day 18....I woke up with a fever and a raging sinus infection. While on levoxyl, if I got an infection I would have to increase my dose until I was over it because my TSH would jump by 1 to 2 points when I was ill. I am guessing that is what happened with my relapse. Now I am on day 20 off levoxyl....the aching minimal and the hair loss is slowing back down. I called my new endocrinologist and told him what happened....he said it is probably going to take my body at least 2 to 3 months to adjust back to "normal" and for my thyroid to respond as it should normally. He did tell me that he thought I was on the right track and that I might have been iodine deficient. He said it is rare in the US but if you diet wasnt rich in fish that it could be possible. What a mess, huh???
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Also the ANA and ESR were negative too! Thanks for your reply, Heather! Do you have trouble with aching and being severely cold all the time? While on Levoxyl, I kid you not...in the middle of summer....I would be sitting in front of my husband's portable heater with a long sleeve shirt and sweats on shaking like a leaf on a tree! MESSED UP! I have always been a little cold natured but nothing like what is was while on levoxyl. Now at 20 days off...my hands are warm again....and I am actually walking around with shorts but still the long sleeve shirt and feel comfortable. :) When I started having trouble...I guess I freaked out a little too quick....needed to give it a couple of days.
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Hey Donna,
No I don't have trouble with aching and being cold. In fact I tend to always be hot! ( keep wondering if they are hot flashes! ha!) So sorry that doc. ever did that to you...what a mess!! Well more of a mess... malpractice! Thankfully it sounds like your Endo. believes it will all get back to normal!
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Permalink Reply by MiNAH on
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I have had it all, and have been through the mill with different drugs.
Also the endocrinologist put me on HRT in my 20s...and it almost near killed me.
The neaurologist put me on a drug too for migrane...which put me into hospital.
Cortisone Steroids took my energy away & made my muscles feel weak like jello!
Yes...drugs have bad side effects and I do not use anything anymore.
I have too many sensitivities to drugs.
I have fibromyalgia cfs,sjogrens, Auto Immune Disease.
Before all this happened, I was a long distance runner like yourself.
Also involved, in weight training.
We had a gym!
I woke up one morning..& couldn't get up.
That was 24 years ago, when my son was 2 years old.
I already had hair loss since I was 14/19 years of age.
I know the weakness and the pain all too well....yet I will not take pain killers.
NEVER!
Just lots of fresh greens, papya, watermelon, red berries, omega3, flaxeed, & numerous other vitamins.
I have been using B liquid Vitamin drops from walmart..& feel stronger.
I EAT THE WHOLE PAPYA SEEDS & ALL.
Also if you can get grape seed vitamins.
Amino acid, Alpha Lipoic Acid, Vitamin D, & you know the rest!
I do have the very essential vitamins....& try to excersize as much as i possibly can.
After a while..I pray that those drugs which messed your metabolism up...will finally work their way out of your system.
I do not use sugar in any food/tea....because I notice it gives me headaches.
It is hard giving sugar up...& I do have some at times.
Yet I can tell it's not good for anyone.
If I have a fried fry..I get a headache right away.
So try not to eat anything fried for a while & see how you go!
No soda at all...it's the culprit.
"Here is a pepsi holic talking..so I have given it up..yes..true, I have"
Okay..hope I could help.
Selenium..too right!
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Permalink Reply by Kimberly Rolon on
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Sorry you are feeling this way! Im sending you a big hug and you can always vent!!!! We have our good and bad days and thats OK. Hope today is a better day!
Kim
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Thank you Kim!!!! I truly appreciate everyones kind words and hugs :). Today seems a bit better....I had my acupuncture session yesterday so hopefully I am on the way back up! I hope you have a wonderful day!!
Donna
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Permalink Reply by Robert on
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Hi Donna
I have no wise words other than I hope that today is a better day for you.
Reading your story is really sad as it's really messed up how you ended up with alopecia and all of the other symptoms you've had due to being wrongly diagnosed. I hope that you recover soon.
Take care
Robert
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Thank you Robert!!! It has been a very difficult time for me! I am a Rn....and I should have known better....especially since I wasnt having any symptoms of thyroid trouble. I am more upset with myself I think. Thank you again though for your kind words! I really appreciate it! How are you handling things? I am truly sorry that this is happening to you too. It really stinks!
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Hi Donna
Don't beat yourself up over it as we tend to assume that the doctors/specialists know better. I definitely think that my AA was aggravated by being put on blood pressure tablets which had hairloss listed as a possible side effect. I was so angry with my doctor as he knew how anxious I was about the AA.
I'm not handling things very well, to be honest. I have periods of being fine then periods of feeling really low (I'm kind of coming out of a period like this just now). This is such a hard condition to handle.
I don't even know why my hair is so important to me, but I just can't stop worrying about losing it all. I've now got 20+ patches. Most of them are small with a few large ones thrown in. I have got some regrowth in some of my spots but it's not enough to cover the patches yet.
Anyway, sorry to sound so down. Hope you're having a good day and that you have a great weekend.
Keep in touch
Robert
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Hey Robert!! Absolutely no needs for apologies! I totally understand how you feel. I have my days and moments where I am fine then others where all I do is cry. I feel like my emotions are on a roller coaster ride! I WANT OFF!! I am so sorry you have so many patches...I know it is difficult. If you ever need a friend by all means I am here for you, ANYTIME! Thanks for accepting my friendship :)
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