[WWWI2]

#1059950

I have been experiencing both and have approached my doctor about this. His response to me has consistently been “This is not thyroid related”

I am on a block and replace regimine, which means I take enough methimazol to shut my thyroid function down and use Levothyroxine (T4) and T3 to get my levels normal. T4 and sometimes T3 are used in hypothyroidism.

With Graves the texture of my hair changed but I then went hypo and it changed again. At the same time, my atenelol was raised, T4 and T3 were added and my hair started to fall out. I asked if one of the medication changes could cause this and I was told “No”. I asked if being Hypo could cause this. I was told that my TSH was never high enough for my hair to fall out. I was told that perhaps this was a sudden case of female pattern baldness and given a prescription for Spirolactin, which is a female hormone to block testosteron. This is a medication I never took because I believed my doctor was wrong.

I have read everything on the internet which told me that both the meds and hypoT can cause hair loss, but my doctor said it was bunk. I should have simply read the insert from the pharmacy for the Levothyroxine. The very first thing under side effects states: “Hair loss may occur during the first months of treatment. This effect is usually temporary as your body adjusts to this medication. If this effect continues or worsens talk to your doctor or pharmacist”

So I’m sitting here fuming about having spent the last several months in distress, being invalidated by my doctor who was WRONG. The upside is this a be temporary (one can hope) but is also one of the reason I am moving on to Endo #3 since August.

As a side note, Elaine Moore recently stated in an article that Graves’ depletes CoQ10. I have the same type of body aches someone can get when they are taking Statins. Statins also deplete the body of CoQ10. I haven’t tried this yet, but wanted to offer it as information to investigate if you too are sufferin muscle spasms/cramping. Just food for thought.

WWWI

[vanillasky]

#1178993

Geez, where did he get his license? Kmart?

Whenever I’ve been hypo, my hair has fallen out. Whenever I’ve been hyper, my hair has fallen out.

And when that idiot thought I had hashimotos and had months of hypo, he could give me Synthroid and my hair would fall out more!!!!!!!!!!!

Where has he been? Did you try Rogaine for Women?

Karen

[WWWI2]

#1178994

Hiya Vanillasky

Kmart HA!

When I didn’t know what was causing it, I was scared to try anything. Now that I know what’s causing this I will probably pursue Rogaine. Thanks for the suggestion Im so sorry you are going through this as well.

There are few things worse than being in significant distress, having to trust someone in authority to help you, have them tell you that not only are they right but you are wrong, only to find out they were wrong and you were right all along…

WWWI

[snelsen]

#1178995

My experience:
I lost some hair when I was hyPO. But no issues with Synthroid and hair loss, ever, and i have been on it many years. My hair remained the same when I was hyper.
From a familial standpoint, and I do think that it is relevant, all members of my
family, parents, grandparents, had no hair loss in their 80’s ad 90’s. ‘
However, my son-in-law became completely bald in his early 40’s, and both his mom and dad had significant hair loss in their 50’s.

I sure hope things improve for both of you. Enough is enough!
Shirley

[LaurelM]

#1178996

My hair loss significantly increases anytime my levels change, even if the change is withing the normal range. I think it is just my body’s first response when it senses something is different.

Laurel

[vanillasky]

#1178997

I know a woman with extreme hyp0thyroidism and she has BALD spots. She takes Synthroid but it’s never enough and her levels are always out of range.

However, she doesn’t gain any weight so I think symptoms are different for everyone depending upon the person.

Another thing that can cause hair loss is lack of estrogen during menopause. My stylist alerted me to this and suggested Rogaine for Women as a preventative. Fortunately for me, my hair is pretty thick so if I lose some I never see bald spots and I hope I never do. God knows I have enough to worry about!

[WWWI2]

#1178998

I will be 50 in October and I am NOT ready for menopause now. I have too many other things to contend with at the moment. I REFUSE to have menopause now. lol

[Gabe]

#1178999

Time for a new doctor. Holy moly it’s clear on anything you read about the disease AND the side effects of meds. Don’t you sometimes wonder if its the medicine combos that are adding to all the symptoms. I strongly believe a lot of what I’m experiencing is because of medication side effects — methimazole, beta blocker. These both just add to the misery and then it becomes hard to tell if the bad things are due to the GD or the damn medicines.

PS. Good luck with holding off menopause. Didn’t work for me! The combo of menopause, GD, and medication makes me CRAZY..

[vanillasky]

#1179000

Doctors don’t tell you anything. I’ve been to enough endos and gynos to know.
Beta-blockers like Atenolol and Metropolol are weight gain drugs. They don’t tell you that you can get fat as a house taking them.

Everybody knows that Tapazole is definitely a weight gain drug. We all go hyp0 and gain weight. Graves’ people are supposed to be skinny!

Too much tranquilizers (Klonopin) and I get sleepy but very, very depressed and loopy. He has me on 3 a day. I only take one or two or I really can’t function. Some people gain weight on Klonopin too. I’ve been lucky with that one or I’d be a horse!

As far as menopause is concerned, I just turned 55 and live in menopause Hell. I have been on every kind of hormone known to man and women and still have debiitating hot flashes, night sweats, moody times and tears. Doctors are numb when I tell them.
Now they are blaming ME for a thickening of the uterine lining, stating my hormones of estrogen and progesterone were never balanced and I’m having surgery on Friday this week. I AM A NERVOUS WRECK.

They are doing a D&C. This is only my second one in the last 2 years. I fought with them. Told them I would like my uterus removed,, they won’t do it. Sighs..this is not going to keep happening to me because aside from Graves’ and the threat of RAI or TT, I don’t need this crap on top of it.

Oh, almost forgot, I am behind schedule for my MRI for my brain tumor.

I often ask God “why am I here?” And “what did I do to deserve this?” Mother always tells me “we were put on this earth to suffer.” And I believe this.

Karen

[WWWI2]

#1179001

Gabe – I have questioned the medications and what they could be contributing too. I also think how increadibly crude it is in the last 50 years the only way still to treat Graves’ is kill or remove the thyroid, which cures nothing really.

Vanillasky – I am not a proponent of benzodiazepines (Ativan, valium, Klonopin) for longer than 2-4 weeks. It is highly addiction. Iwas put on Ativan (a sister to Klonopin) for over ten years and have been spending the last two years trying to withdraw from it. For me the experience has been equivilant to that of Graves’. I am telling you this not to scare you but to consider looking into alternatives if at all possible. Doctors can get you on, but rarely are they helpful in getting you off the drug. If you want ANY information or support with dealing with withdrawal when and if you decide that’s what you want, I can offer you many online resources. Ask anytime…

As far as menopause, I’m doing something I believe is somewhat risky. I’ve been on continuous birth control since 2008 as a result of severe PMDD. It has stopped my cycle completely and my intention is to continue to take it until I have finished the benzo withdrawal, gotten the Graves’ resolved as best I can and perhaps try and ride it through some portions of menopause. I’ve been sick since 2008 with the first of 3 AI disease and at the moment the idea of dealing with menopause on top of Graves’, benzo withdrawal and lymphocytic colitis is more than I can handle.

WWWI

[Talley]

#1179002

I am so sorry to hear about the latest endo!

Why is it so hard to find a good doctor?? The first one I saw was awful – I knew more than she did (and thats saying A LOT), I like the second one – except for his most recent email (think he’s more worried about himself than me)…

When I tried to get appointments with the “highly” recommended doctors (two of them), I was told their practice is full and they wouldn’t take my name.

I’m at the point that I wonder if my PCP would just be willing to monitor my levels…

[vanillasky]

#1179003

@WWW12, I understand what you are saying. I am sure I am addicted to Klonopin. But the way things are right now in my life, I cannot do without it.

I try to take it one day at a time. I did try last year to get off of it, and no success.

With the anxiety brought on by Graves’, and now my threat of uterine cancer, my husband’s spinal disease, an aging parent, there is no way in Hell I see anything calming down.

I do think this pill has at this point, kept me from slitting my wrists, so I take it. I just figure some day hopefully I can leave it behind.

If I have to go to Dr. Drew’s rehab,I will!

[WWWI2]

#1179004

Talley – Why is it so hard to find a good endo? That’s a VERY good question. Why do they know so little about Graves is my question. Had an interesting turn of events, sort of lol. Since the insert on the medication said that “Hair loss can occur the first few months of taking this medication. If it persists ask your doctor or pharmacist.

So since I had already asked my doctor and he was a boob-head, I went and talked with the pharmacist. Sadly he was also unaware that Levothyroxine can do this. However, as he was reading the insert he paused and explained to me that he was hypothyroid and had been on Levothyroxine for a long time. When he first started on this med, he too started to lose his hair, and apparently until I brought this in he had never understood why and that it made all kinds of sense.

He seemed to understand and have empathy for my plight in that this is a drug I have to take, for the rest of my life. The nice and helpful thing was that he said that I will most likely not lose all of my hair and that my body will adjust in time. That was the most hope I’ve gotten from any professional out there. It would have been SO easy for my endo to have said that instead of saying 1. He didn’t know what was causing it but 2. This definitely was not related to my thyroid or thyroid meds. That still makes me very angry.

The hard part of leaving him is always the second guessing, considering he DID go to medical school and he is supposed to be the expert. My brain has trouble getting around the idea that someone with such a good reputation and who has practiced for 30 years, could know less than silly little me lol. but it’s a leap of faith to go elsewhere and i’m taking it.

Vanillasky – For what it’s worth, I was on Ativan for over 10 years so I absolutely understand your perspective. If and when you decide that you no longer want to take it, it has to be entirely your decision and on your time frame. You have a WHOLE lot going on right now and this isn’t the time to worry about it. Part of it is that I’m very sensative and frustrated by the consequenses of the drug for me and so whenever I see someone else on the drug, I respond very strongly. The only thing you should focus on right now is getting as healthy as you can and feeling better. My heart goes out to you right now with so much going on in your life. Just take care of you k?

WWWI

[vanillasky]

#1179005

@WWW12: thanks so much for your kind words. Just got back from the gyno’s office for my pre-op instructions.:cool: And Yes, I am a nervous wreck. She told me to take the Klonopin the morning of the surgery!

I wanted to answer about why it’s hard to find a good endocrinologist. I think that with the diabetes epidemic in the United States, they are more geared into diabetic problems and that’s all they know.

With thyroid, unless it’s cancer or Hashimotos/hyp0thyroidism, they just throw pills or do surgery.

With Graves’, they fail to realize how it affects each person individually. Some make judgmental comments to me like “why are you so thin?” Or “do you have an eating disorder?” I resent that because with hyperthyroidism, most people have a tendency to be thin. And then if you are heavy, you get the same question: “what are you eating?”

We only have about 5 endos here where I live and I was misdiagnosed for 15 years by a younger endo that said it was Hashimotos. Not knowing what TSI was, I never knew there were blood tests for antibodies. When I got to Cleveland Clinic, that’s the first thing they did. My TSI is 800 -indicative of Graves’ disease.

So sometimes I also think it’s a matter of money. Insurance companies dictate to the doctors which tests to do and which not to do thus not having to pay out. TSI is very expensive. Even Cleveland Clinic sends it to Mayo to have that analysis.

We need more awareness in the community for Graves’/ People pay attention to Breast Cancer, but what about Graves? You don’t hear it. When people have TED they get stared at. It is a stupid, judgmental society.

I feel we are the forgotten people. Sorry for the rant and rave!

Karen

[Kimberly]

#1179006

I meant to add a note to this thread yesterday to make sure that you are getting information on supplements from credible sources – and to consult with your doctor prior to adding *any* supplement to your regimen. Here is some info from the National Institutes of Health on CoQ10:

http://www.nlm.nih.gov/medlineplus/druginfo/natural/938.html

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