Thyroid Disease suffers

[shelleyd2008]

I was diagnosed with Graves' disease in 1998. That is a hyper-thyroid disorder, and I also had a huge goiter on my thyroid. I was on different medications for it, and was never very good at taking any of them.
In November of 2005, my doctor had decided to give me the radio-iodine treatment. It was supposed to slow down my thyroid, since the readings were off the chart. It ended up stopping it completely. I had VERY low heart rate and BP, plus achiness, sleepiness, and just felt downright miserable, because of the 'dead' thyroid. I don't see how anyone can NOT take the meds. Now, my thyroid does not work at all, so maybe that has something to do with it. I have been taking Levoxyl, which is the name of the levothyroxine, and am up to .15 mcg, and still don't feel 'right'. It seems like the stronger the dose is, the more that I need. Has anyone else had the radio-iodine treatment?
When I lived in FL, my first doc gave me a prescription for Synthroid, but my insurance wouldn't cover it. The Pharmacy would not substitute for the generic without my doc's OK. So that tells me there is a difference in the two types of meds, besides one being generic.
I too have the leg aches, and numbness in my arms, low back pain, and the severely dry skin and hair. It just sucks to have this problem!
I wish I wouldn't have had the radio-iodine treatment done, at least then I felt normal.

 

[HenSpa]

Quote:
From my understanding, a cold nodule is one that isn't cancerous. They do a radioactive scan on your thyroid/nodules. Thyroid diagnosis on nodules is a slow thing according to my doctor. If it grows while on the meds, then that's not the best sign. They biopsy it, might shrink it, might take it out. Depends on a lot of factors. I had a scary waiting period of about a year on my nodule. Turned out to be part of a lumpy/bumpy thyroid that is just part of hypothyroidism, thank you God!

 

[porteryork]

Okay, so I was diagnosed with Graves Disease and Graves Eye Disease (seperate but related) Graves is a form of Hyperthyroidism. Because of my eye issues, I opted for the surgical removal of my thyroid. Turns out it was a good thing since they found cancer that had not been revealed on previous tests.

4 Surgeries and radiation treatment later and three years, here are the things I have learned.

Educate yourself. You are a partner with your Dr. in YOUR health. If it doesn't feel right or sound right, ask questions. If you hit resistance, change Doctors. They are not gods, just people.

I cannot take the generic form of Synthroid as many of you have expressed. I have had issues with generics in general and my Dr. has me on a no generic perscription.

HOW you take the synthroid is important. Many druggists do not properly inform you of the issues with thyroid medication. You MUST take it on an empty stomach, with a full glass of water. It should also be taken at about the same time everyday. I put it beside my bed and when I get up about 4 to go to the bathroom, I swallow it then with water.

I also hate the drug part of my life, but without it, no life so ........I do hate that I had to get the old lady pill box to help me remember..........

Good luck and keep being tested. Your thyroid and all of your hormones change with the changes your body goes through naturally. The dose you are on when you are 30 may not be the dose you need to be on at 40 etc.....

I am great now and life can get better!

Michelle

 

[Chicabee19]

I was diagnosed with Graves' disease in 1998. That is a hyper-thyroid disorder, and I also had a huge goiter on my thyroid. I was on different medications for it, and was never very good at taking any of them.
In November of 2005, my doctor had decided to give me the radio-iodine treatment. It was supposed to slow down my thyroid, since the readings were off the chart. It ended up stopping it completely. I had VERY low heart rate and BP, plus achiness, sleepiness, and just felt downright miserable, because of the 'dead' thyroid. I don't see how anyone can NOT take the meds. Now, my thyroid does not work at all, so maybe that has something to do with it. I have been taking Levoxyl, which is the name of the levothyroxine, and am up to .15 mcg, and still don't feel 'right'. It seems like the stronger the dose is, the more that I need. Has anyone else had the radio-iodine treatment?
When I lived in FL, my first doc gave me a prescription for Synthroid, but my insurance wouldn't cover it. The Pharmacy would not substitute for the generic without my doc's OK. So that tells me there is a difference in the two types of meds, besides one being generic.
I too have the leg aches, and numbness in my arms, low back pain, and the severely dry skin and hair. It just sucks to have this problem!
I wish I wouldn't have had the radio-iodine treatment done, at least then I felt normal.

I'm so sorry for how bad you must feel! My brother had Graves and takes the full replacement dosage of Armour.

.15 mcg is not anywhere near the full replacement dosage if you have no thyroid gland at all, so I'm really wondering about that. The average full replacement dose of levothyroxine sodium is approximately 100-125 mcg per day for a 154 lb. adult.

I would never, ever take one of the synthetics (and you are right, the generic is worse) if I had no thyroid function. I would stick to Armour for certain.​

 

[Chicabee19]

Okay, so I was diagnosed with Graves Disease and Graves Eye Disease (seperate but related) Graves is a form of Hyperthyroidism. Because of my eye issues, I opted for the surgical removal of my thyroid. Turns out it was a good thing since they found cancer that had not been revealed on previous tests.

4 Surgeries and radiation treatment later and three years, here are the things I have learned.

Educate yourself. You are a partner with your Dr. in YOUR health. If it doesn't feel right or sound right, ask questions. If you hit resistance, change Doctors. They are not gods, just people.

I cannot take the generic form of Synthroid as many of you have expressed. I have had issues with generics in general and my Dr. has me on a no generic perscription.

HOW you take the synthroid is important. Many druggists do not properly inform you of the issues with thyroid medication. You MUST take it on an empty stomach, with a full glass of water. It should also be taken at about the same time everyday. I put it beside my bed and when I get up about 4 to go to the bathroom, I swallow it then with water.

I also hate the drug part of my life, but without it, no life so ........I do hate that I had to get the old lady pill box to help me remember..........

Good luck and keep being tested. Your thyroid and all of your hormones change with the changes your body goes through naturally. The dose you are on when you are 30 may not be the dose you need to be on at 40 etc.....

I am great now and life can get better!

Michelle, you are so right! I set my alarm to take my first dose under the tongue at 5 a.m., then go back to sleep. If it is swallowed it most definitely needs to be on an empty stomach. When I take my 10 a.m. and 4 p.m. doses, I make sure I have not eaten for one hour before or one hour afterward. (helps me diet!)

Your comment about doctors is right on - I could never keep seeing one that did not listen to me and see me as a partner in my own health decisions.

You can learn SO much by reading stuff on the Internet - the most recent research is usually published there nowadays.

added: for those of you who don't want to take a pill every day ? I take up to 40 every day.

 

[Chicabee19]

chickabee19, I was wondering what is GERD that you spoke of before. Also, what does it mean when the nodules you have are cold? What do they do about the nodules?

sorry, I missed this somehow!

GERD is Gastroesophageal Reflux Disease, sometimes called Acid Reflux disease. I had it for a long time, had a scope test that showed nothing. Turned out to be lactic acid and inability to digest foods - they would sit in my stomach for a long time. When I stopped eating some of the foods on the Blood Type Diet type A avoids list, it immediately cleared up and has not returned. Nothing short of miraculous since it was so painful on a daily basis. Turns out I was eating tomatoes pretty much every day, sometimes every meal (I grew up in the south, where that's pretty common).

Cold nodule means it does not put out abnormal amounts of thyroid hormone, or even none at all. Sometimes nodes are "hot" and can put out massive amounts. These can turn into cancer.​

 

[shelleyd2008]

Quote:
I'm so sorry for how bad you must feel! My brother had Graves and takes the full replacement dosage of Armour.

.15 mcg is not anywhere near the full replacement dosage if you have no thyroid gland at all, so I'm really wondering about that. The average full replacement dose of levothyroxine sodium is approximately 100-125 mcg per day for a 154 lb. adult.

I would never, ever take one of the synthetics (and you are right, the generic is worse) if I had no thyroid function. I would stick to Armour for certain.

Oh sorry mine is 150 mcg, .15 mgm. I get confused on the mcg part, but it's the 150 dose, and it still isn't high enough. I have been on levoxyl for about 2&1/2 years, and like I said, it seems like the higher the dose, the more my body needs. I just went yesterday for more blood tests, and I'm pretty sure the will increase the dose again. My skin is getting excessively dry again, and I'm still very intolerant to cold, although that has gotten better.

 

[Highlander]

Quote:
Is that Restless Leg Syndrome you are referring to? If so, what meds to you take for it? I suffer from it but I thought it was just another of those things that I had to put up with!

 

[d.k]

* Strange what helps symtoms, sometimes. My mom had nighttime leg cramps for almost 2 years (she is on Levox, too.) She started taking 5OO mg. vit.C w/echinachia for a cold and the leg cramps went away. No more leg cramps so long as she takes the C. Odd.

 

[magikchick]

I have suffered with hypothroid for over 30 years now. I found out I had it when my weight shot up form 120 to 190 lbs.

My first doctor put me on synthorid and said this would solve all my problems. He checked my blood and uped my dose and still it did not help a lot of the symptoms I was having.

My second Dr. was drug driven and kept me on a high dose and wanted to up it more. I was having trouble sleeping and felt awful.

I found a third Dr. and this one asked me how I was feeling and what kind of symptoms I was having. He told me I was taking the pills wrong, I should take them first thing in the morning on an empty stomach. He reduced my dosage and put me on Cytomel, T3, which made me fell alot better. Now I'm able to lose weight for the first time in years. My skin isn't all dried out and I don't take scalding hot showers all the time.