Hypothyroidism

Savannah.. I'm not following you.. LOL

I responded to a post about Twilight and Rob Pattinson.

Anyway, I was originally diagnosed hyperthyroid about 8 to 9 years ago. I did the medication to try and control or suppress a few hot nodules I think they called them for about 1 year. That didn't work so then they gave me radioactive iodine pill, which completely killed my thyroid. then, I tried synthroid felt awful. now i'm on Armour thryoid and I'm doing much better. I still haven't found my perfect dosage after. I have to go back and get my blood levels check because I've been on that diet pill Alli, which has helped me loose weight but I'm getting fatigued again which could mean my Armour thryoid dosage needs to be increased.

I can totally relate! I took a the RI pill and was tol 50/50 chance that it would cure my hyperthyroidism. Luck was against me since it completely killed my thyroid. I did Synthroid for many years and I think my dosage was adjusted every 2 months. I was seeing an endocrinologist, female. I would tell her I was fatigued, depressed, no sex drive, etc. It was as if I was invisible, if my numbers happened to be "ok" she would tell me it's not my thyroid my blood work showed I was fine. I felt stupid, like it was my fault somehow. Until I research and found out about Armour, I told her about it and she was against it. So I found a doctor that would prescribe it. I love my doctor now. He takes the time to ask me how I'm feeling. He takes notes about what I tell him. I'm doing much better now. But like on my previous post, I'm taking Alli to loose weight, and it has worked for me. I lost about 10-15 lbs, but I'm starting to feel fatigued again. I checked with my doctor before taking it and he said it was ok, but did tell me to check in after 1 month of taking to check my blood levels again, but I've neglected to do so, my fault. So its time to probably up the Armour dosage.

Sure, suuuure you're not following me. *wink*

I gotta pick your brain here. I did 2 yrs on PTU/thyroid suppressors. Nothing so far. My bloodwork has gotten better, but it's still way outta control.

After you did the RAI/radioactive iodine, what was your experience with Syntrhoid exactly? I have one of those docs who isn't progressive and refuses to rx Armour..I looked into and I want it SO bad because I'm afraid I'll fall into that category of patients who don't respond well to Synthroid. With a wedding coming up in a year, the last thing I want is massive weight gain, fatigue and depression. Just wanna know what your response to Synthroid was. My endo only rx's synthroid or levothyroxine. Old school. I'm trying to freak or let that impact my decision to go ahead with the surgery, but it's hard. I feel like I may end up stuck yo yo'ing on medication that isn't right for me.

To the best of my recollection. None of my symptoms went away. I had the weight gain. Depression. I would cry for no reason on my way home from work. Fatigue. I just wanted to sleep all the time. No sex drive. Hair loss. Joint pain. Anxiety attacks. Cloudy thinking. Muscle cramping. For me it was fatigue and thinking I was going insane PLUS it didn't help that my Endo Dr would blow me off and tell me that it had nothing with my thyroid because the blood work numbers were fine. I don't know if it is true by my Endo told me since I was hyperthyroid it was more dangerous to be hyperthyroid than hypothyroid, I trusted her and chose to take what I hoped to be a "magic" RI pill that would cure me. It killed my thyroid and now here I am, taking a pill every morning and every night.

I think in most hypothyroid cases, well at least in mine they right Rx dosage seems to be a moving target. Although I must say with Armour I've been really stable. If I start crying for no reason, anxiety attacks, fatigue I know its time to go get it adjusted.

I just wanted to jump back in here seeing as how I just had my total thyroidectomy.

RAI CAN be a bugger. My aunt, who is a nurse, had it 7 yrs ago, and wishes she hadn't. She wishes she had gone for the thyroidectomy. Thing is, RAI doesn't always kill all of the thyroid...and therein lies the problem. Regrowth can occur, which makes the "moving target" of finding the right dosage all the more hard. The dosage you need is forever changing (which it will from time to time anyway, even with total thyroidectomy), because there are parts of your thyroid still pumping out hormone.

To be honest, with anyone whose had RAI and is still having a lot of problems, I'd almost start asking about having a removal surgery. Just researching, finding out if your doc can tell you how much of your thyroid is still active and if surgery is an option for you.

ANYthing that removes or kills the thyroid results in being hypo for life. BUT...that gets a bad rap.

You can be what is known as euthyroid after both RAI and thyroidectomy...and it is where you want to be if you have thyroid disease, ladies. lol There is almost never a "cure" if you have hyperthyroidism OR hypothryoidism. I had mine out knowing I'd be taking a pill every day for the rest of my life...and I can say, now only 8 days later, CONCLUSIVELY that it saved my life to have it done.

The main thing is to get treatment. For something like 50% of patients, being hyperthryroid(overactive gland) can be treated with meds for about 1 1/2 yrs and resolve itself. ANYone outside of that 50% is going to have to deal with it via another avenue. Being either hyper or hypo can lead to serious health complications, believe me..I have been there. I didn't take it seriously enough and I am thankful I lived to tell the tale. If i had it to do all over again, I'd have dealt with it aggressively and definitely right out the gate and maybe my suffering and the toll on my body wouldn't be so high. This even began to affect my vision....it's that serious.

The thing is, doctor's are so used to seeing and treating patients on both ends of the spectrum. It's so important to find a physician who is willing to LISTEN to you and for YOU as a patient to pay attention to your body. Anything that doesn't feel normal isn't. Regardless of what anyone tells you. If you're on the right dosage, you should not feel constantly fatigued, so regardless of what the doc says, stay insistent and start shopping around if they refuse to listen. The "normal range" numbers aren't necessarily normal for everyone, depending on what your symptoms are. Just as a for instance, in most cases, they will tell you that normal is anywhere say, under 4.0 for hypo patients. But if you are sluggish, and gaining weight, that is not normal. To be able to properly metabolize fat you need to have a TSH of 1.0 or less.

I'm still new to the "game" and believe me...I am educating myself like I'm going for a ph.D in this stuff. It's my life and I am going to know all there is to know as a lay person so that I can walk into appts secure in what I'm being told vs. what I know to be true. It's unfortunate we have to do this as patients, but thats the sad fact of it all.

I start my replacement hormone (levoxyl) tomorrow. They had me wait til all the EXCESS hormone I had in my body from being WAY hyperthyroid dropped...so now, as of today's bloodwork, I am officially hypothyroid; on the complete opposite end of the spectrum. In ONE week's time, my vision has changed 100% for the better, my face has changed....my mom walked in to see me the morning after and nearly started crying she said I looked so much like my "old" self again. Treatment is good. Don't be afraid of doing something to change what's happening to your body. I was soooo desperate to hang on to that damn gland, thinking I didn't want another surgery, and that I was afraid it would make things worse...ultimately, the thing was KILLING ME, literally. I feel positive about the choice I made, even if it took me two years to make it.

Yay Savannah ~ I'm so glad things are going better for you. I've had Hypo (Hashimoto's) since I was 9 and I'm also on Levoxyl so if you have any questions that I can help you with just let me know.

Oh! I love you, love you, LOVE you! Have I mentioned I <3 u? lol

Man, do I have questions. I'll start with the two biggest.

Whats up with the headaches I've had since becoming hypo and do you feel that it's common practice to physicians to shoot for TSH levels between 1-2 as optimal? What I'm hearing from fellow post total thyroidectomy patients is that optimal numbers for overall good health and healthy weight balance is BELOW 1. I haven't had a chance to talk to my endo yet since I dont' see him for another 5wks. He wanted me on my L-thyroxine for six weeks before rechecking my levels.

Oh, and what about the generic form because that's what I'm on. I've heard about fillers having adverse effects. Whats your take on that? My hair really took a hit with the Graves and now I'm hoping it rebounds, but I heard that part of the problem with generic thyroxine is it can cause hair loss? bah!

I feel GREAT..more energy than I've had in four years and I realize now how truly sick I was! It's wierd how you get acclimated to feeling a certain way and start to believe it's normal. I thought a lot of how I felt was just stress and motherhood even after I knew I had hyperthyroidism. I can't even believe what I get done in a day's time now, just 2 wks post op..it's insane!

OMG! I have Hashimotos too. PLEASE tell me...what the hell do I have to do to lose some weight? When I diet and exercise I lose a few pounds, and then nothing. It's been 4 months and I have only lost 15 pounds. I'm talking 1-2 hours of exercise a day, plus dieting. I am fed up and am ready to throw in the towel and just enjoy eating garbage and being lazy. I was reading something about "metabolic set point" and "insulin resistance" causing problems for us. Do you have any advice?

HI Savannah, thanks for the love.

Ugh, headaches are shitty. I don't really remember having any when I was first diagnosed so I'm not sure I can help you there. As for the levels ~ Really, everyone varies when it comes to optimal levels. I am at my best when I am below 1 but I think the doctor prefers me to be a bit higher. Once you've been on the medication for a while you'll begin to notice subtle changes between levels of dosage. LISTEN TO YOUR BODY! While levels are good indicators for the doctors you are the only one that really knows if you are a good level or not. It is great that you are feeling so good so quickly. Keep monitoring yourself and make note of any changes (when I was first diagnosed my mom kept a little log for the doctor noting the changes).
Sometimes you have to stand firm with the doctor, if you are feeling good and your level is within normal range let the doctor know (even if they want to change you to be at their level of optimal - hope that makes sense).
I've seen a number of different doctors (I move a lot) and inevitably the first time they test me they want to change my dosage. I ask them if I'm in a healthy range and if so I refuse. I've gone up and down on dosage levels and when it's not right it is very obvious and a real pain.
Another thing to mention is that TSH often changes with age so your levels may vary without changes to medication.

Yes, the Levothyroxine does cause hair loss. It really freaked me out! I also had really erratic periods, even missed one. After taking it for a couple of months I asked my doctor to switch me to the Levoxyl. It's still a generic but it doesn't have the same side effects. I know that some insurance companies don't want to cover the non-generics but if you are experiencing side effects your doctor can right a specific prescription that states you can't take the generic. It worked for me.

Hope I answered your questions, if not, let me know.

Arggg... yes, the Hashimoto's weight demon. I have a couple of suggestions. First, try talking to your doctor about your TSH levels. You may be slightly off, if not, see if you are at the high end of the spectrum. If you are you can talk to your doctor about the possibility of changing dosage. It's a long shot if you are healthy but it never hurts to ask. Second, make sure that you aren't taking any diet drugs or enhancers. These can really mess with the thyroid medication. Any metabolism boosters that work for "healthy" people have a good chance of doing almost the opposite for us. Also, what diet foods are you eating? Hypothyroids should avoid foods that are goitrogenic:
cabbage, broccoli, turnips, rutabaga, mustard greens, kale, spinach, Brussels sprouts, peaches, pears, strawberries, and radishes cauliflower, millet, and African cassava ~ while these are healthy foods they can all nullify our medication. (They aren't as bad if they are cooked but they shouldn't be eaten raw, one or two occasionally won't hurt but definitely not in large quantities.) I've also read that Soy can be problematic for those on thyroid medication.

I haven't read it yet but I've heard that the book "What Your Doctor May Not Tell You About Hypothyroidism: A Simple Plan for Extraordinary Results" offers some good advice regarding dealing with Hypo and some nutritional advice.

Whew! Hope that helped. If you have any other questions or just want to vent feel free to PM me.

Thanks for the tips! I have heard something about the soy screwing with the meds, but am not a big consumer of soy anyway. Do you know if it's true that birth control screws with it too? I have been on the same dosage and it didn't even change throughout my pregnancy. Then after, when I started birth control, my dosage had to be upped 3x already, and I have to still go back for more blood work to see if this one is right. I just feel so down about the weight issues. It REALLY is sooo hard to shed those pounds when you have this working against you. I think I may also pick up that book you recommended to see if there are any helpful tips in there too. Thanks again!!! Congrats on being a Mrs. by the way!