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By: Lisa

Lisa — Sat, 13 Dec 2008 17:01:27 +0000

I was diagnosed with a multi-nodular goiter about 5 yrs ago. Endo put me on 125mcg of synthroid to shrink it. That made me hyperthyroid. I went to my pcp because I was shaking, anxious and my eyes looked like they were going to pop out of my head they were so big. At that time, I did not know much about thyroids and trusted the docs. What a huge mistake because I feel like I am paying for that very mistake now. As of now, I have had a thyroid panel done and antibodies checked. My thryroid levels came back normal but the antibodies came back positive for graves disease, that is when the Endo told me he did not beleive my thyroid was the problem and sent me to a neurologist. I figured out what road the neurologist was going to send me down, the road of antidepressants. Antidepressants scare me, they say that you will not become addicted they are safe. If that is the case I pose a question, then why the hell do they have to wheen you off of them?! What a Joke! I tried the antidepressants and they just made me suicidal! Now I drive 6 hours away to see a doctor in advanced medicine that tested my cortisol levels and found I maked too much cortisol and my thyroid is out of whack! I am hyper thyroid. I now take tapazole and have a new problem. The pharmacies keep trying to give me generic form even though my doctor has requested brand only! I now have to play games finding the Tapazole when ever I am out! Well, this the 3rd day without my meds and I am miserable! Scared, and very depressed. I am posting this just to try to have some kind of focus other than depression. I am alone at home and keep crying. I feel like am posting this just to save my life right now! I hate this and feel like my life has been hijacked! If any one reads this please respond, you may just be giving me hope at this point! Help, I am reaching out for support!

By: Linda

Linda — Sun, 15 Apr 2007 14:31:15 +0000

As long as your blood tests a in the normal range thats it. your office visit is over! It doesnt matter how you feel or how much pain your in.I just changed doctors and I hope this one listens to me . I have been on Synthroid for 1 yr and 5 months. I havent felt good , I feel worse. I was on Cytomel for 2mos, right after surgery and I thought I was a miracle drug. I felt like my old self . Now I dont even know who that person is in the mirror looking back at me.

By: Jo

Jo — Fri, 19 Jan 2007 00:09:41 +0000

Make sure that the pharmacy doesn’t substitute a generic brand without asking. They did that to me. There is a big difference in Armour by Forest and the other generic brands. When I called them about the substitution they said that the doctor had not told me to fill it as a brand name and they ALWAYS fill it as a generic unless told to do otherwise. My doctor would not have wanted a generic, but she probably didn’t know that the pharmacies have their own rules about things like that.

It took me 12 years to find a doctor that would even prescribe Armour!

By: Marsha

Marsha — Mon, 08 Jan 2007 13:21:17 +0000

I’ve been on Synthroid for 19 years, diagnosed with a goiter. Felt O.K. until I crashed about 4 years ago, got Graves Disease and the worst stressful time in my life! 4 years later, I have severe osteoporosis, why, read the contraindications on Synthroid Patient information sheet. Few docs will tell you to read the fine print: This medication taken over an extended period of time can cause bone loss! I sure wish I had read them! Can I sue?

By: Angela Doyle

Angela Doyle — Sun, 07 Jan 2007 18:34:43 +0000

I don’t know if a class action suit would help or not. It would make a lot of money for some lawyer(s). I too suffer and have for most of my adult life with hypothyroidism! I was not diagnosed until about 12 years ago and they decided to test for it then cause I was in the hospital and the nurses who check in the middle of the night; found me NOT breathing! I know it is very serious and there should be way more research done on this terrible disease.

I have taken synthroid most of the time but did change to Armour for about a year and didn’t seem to feel much different on it. It may not have been a high enough dose. My doctor who is an endicrinoligist, adjusted the dosage according to how much synthroid I was taking at the time. I don’t believe I’ve ever been on a high enough dosage. I too have all the side effects…some way worse than others. I have been hospitalized several times for severe depression, I had to have emergency gall-bladder surgery, my weight went from about 115 to about 185, my hair and skin are dry, I ache all the time, and am sooo tired sometimes I think I could sleep forever. It takes your energy, it takes your ambition, it takes everything that’s important to you and leaves you a sick person. I wish there WERE something that someone could do about it.

The other really bad thing is that it is hereditary. My daughter was diagnosed about 2 years ago with this and she is getting worse. Gradually taking more medicine and trying to find an answer. Her doctor put her on synthroid and anti-depressants and she wants to change to armour and T-3. If there is a genius out there on this subject, please tell us what to do. (Note from Janie: you aren’t on enough Armour! Those conversion charts are far too low. Mine would have been 1 1/4 grains, and I had to get to 3 3/4 grains before I was optimal. And your daughter also needs to be on Armour, without added T3. If you have any personal questions, go to our forums here: http://www.stopthethyroidmadness.com/community )

By: Sally Pacholok, R.N., BSN

Sally Pacholok, R.N., BSN — Sat, 23 Dec 2006 01:28:05 +0000

Yes, I am too appalled at the medical establishment— but even more appalled by the media for not reporting on vitamin B12 deficiency– which is common in thyroid patients. I have written the book, “Could It Be B12? An Epidemic of Misdiagnoses,” Quill Driver Books, 2005, and the media could care less! This is crazy-making because daily in my practice as a R.N. I see patients who have B12 deficiency that was overlooked or misdiagnosed. This is affecting millions of people— and billions of dollars are being wasted. People are crippled, injured, disabled and even die from B12 deficiency—- yet the media does not think it is an important issue—but Britney Spears and who killed who is. The public must demand for responsible journalism verses celebrity following and murder stories. Because B12 deficiency is a vitamin—- the media thinks it is stupid. The 1934 Nobel Prize winners of medicine(Minot, Murphy, and Whipple) are rolling over in their graves— for their discovery of vitamin B12 has somehow been forgotten. The public must demand for proper screening and testing in symptomatic and at-risk people (using the methylmalonic acid test) the serum B12 test is not as sensitive. If there is any way to assist in getting the word out regarding this disorder— it would be greatly appreciated. This will also help many who read your blog.

Sally M. Pacholok, R.N., BSN

By: Brenda

Brenda — Mon, 18 Dec 2006 04:36:19 +0000

Yes! I would love to join in a class action lawsuit! It’s one way to draw serious attention to this problem and to make doctors to pay attention.

By: Laura

Laura — Mon, 18 Dec 2006 04:03:26 +0000

I’ve been hypothyroid for 20 years after being misdiagnosed for so long that I ended up in myxedema coma–a condition that one website said, “is only seen in third world countries and with older people in nursing homes.” I’ve fought and “overmedicated” myself for the whole 20 years! I’m down to no primary care doctor/no “endoidiot”/and no prescription for Thyroid in the middle of April 2007. I’m going to self-medicate at that point. Being hypothyroid has ruined every relationship I’ve ever had with family and friends falling by the wayside not wanting to deal with my ongoing illness and exhaustion.
It’s such a relief to meet up with people who are going through the same hell I’ve been going through. I’ve been fighting by myself for 20 years…it’s nice to have people who are going to help me fight.
To Janie and all the people involved with her efforts: THANK YOU!

By: Deb Songer

Deb Songer — Wed, 13 Dec 2006 18:12:36 +0000

I have been battling with hypo/ruin your life, for 4 years. Fitness has been my life and career, as a personal trainer, yoga and meditation instructor, I was your typical hipocrit. I have gained 20lbs, lost ALOT of hair, and feel sad and crazy. I have never heard of armour. I have went from synthroid to thyroxine. I am currently on 100mg. I live in North Dakota and have no one who specializes in this area, and treats everyone the same. I am desperate to be “normal” again. I am into natural remidies, and am hoping someone can give me some hope to a “balanced” life. Thyroid issues seem to becoming epdemic, as such a healthy, active person, I would never think this could happen to me. I want to learn as much as I can so I can help myself as well as others.

By: rachel

rachel — Tue, 05 Dec 2006 07:41:14 +0000

I had a thyroidectomy Aug.2005 and started on Levothyroxine. I don’t remember the original dosage but over the next several months I had so many body aches and pain and I could sleep for 16 hours in a day. I had to take pain pills to find relief and basically slept to be able to go to work. My life as I knew it was gone. I kept complaining to my endo but as long as blood tests came back as “in the normal range” I didn’t get help. Finally,I decided to call my doctor and DEMAND Armour and if she didn’t do it I was going to find another doctor. To my surprise she prescribed it for me and after the THIRD day I felt a difference. A HUGE difference. I am no longer sleeping my life away and the pain is gone. I’m 42 and overweight so I have the normal aches and pains but I don’t need the pain meds to get through the day. I can’t tell you how thrilled I am. I had asked about Armour months earlier but she kind of poo poo’d the idea. Well,thank goodness I started listening to my body and with help from my primary physician I feel I am on my way back to my old self. Do NOT let the blood tests fool you. All my thryoid tests came back normal in early Aug.2005. If it wasn’t for my wonderful family doctor who felt a goiter on my neck and got me in for a scan right away,who knows how long it would have been. I had a goiter on the left side of my thyroid and when they opened me up I had cancer on the right side. All the while my thryoid blood tests were showing NORMAL. Don’t let these dr.s make you feel you don’t know what you are talking about when it comes to your own body. They aren’t gods. They don’t know everything. Trust your instincts and speak up for yourself if you aren’t feeling good and aren’t getting results. Here’s to good health!!!