Thyroid problem -- a question

[Marseeya]

I've been hypothyroid since 2001 and I've been taking 150 mcg ever since. Today at the doctor, he told me my thyroid was failing and he's upping the meds, and then he said the meds can only go so far -- like 250 mcg.

What does that mean when the thyroid is "failing"? What happens after that if it fails completely?

It sure explains why I've been feeling so lousy these past few months.

 

[Christine]

Nothing really happens when it totally fails.

Obviously, in the past, you sluggish thyroid has been working for you a little bit (but at a dose of 150 mcg, probably not much). So, it looks like you just need a higher dose. At some point, you will get stabilized on a dose of thyroid hormone. I have absolutely NO working thyroid gland and I am fine on .137 mcg. I know a few people who have to use the upper limit but not too many. It is weight related and also how well you metabolize meds.

 

[luvwinnie]

Just wanted to wish you luck. My friend cannot get her thyroid stabilized and has to go for an ultrasound today. It's making her feel miserable.

 

[Marseeya]

Nothing really happens when it totally fails.

Obviously, in the past, you sluggish thyroid has been working for you a little bit (but at a dose of 150 mcg, probably not much). So, it looks like you just need a higher dose. At some point, you will get stabilized on a dose of thyroid hormone. I have absolutely NO working thyroid gland and I am fine on .137 mcg. I know a few people who have to use the upper limit but not too many. It is weight related and also how well you metabolize meds.

Well that doesn't sound so bad then. I need to go on a diet.

Do you still have a thyroid, or was it removed?

 

[toto2]

Your thyroid can " die" and stop working completly. When we take the medecine , we are in fact only providing the hormones the gland is not providing. But as we supplement , the gland get lazier and lazier , and could eventually stop. My doctor has me checking my thyroid every 6 to 7 month. The biggest dose of medecine , is equivalent to the dead gland ( I think , and if I am wrong , I hope someone will correct me !)

My mother and sister both are hypo , just like me ( unusual for men , but still existant). It is one of the most common ailment and one of the easyest to treat , but you have to be followed closely by your doctor.

 

[Marseeya]

Nothing really happens when it totally fails.

Obviously, in the past, you sluggish thyroid has been working for you a little bit (but at a dose of 150 mcg, probably not much). So, it looks like you just need a higher dose. At some point, you will get stabilized on a dose of thyroid hormone. I have absolutely NO working thyroid gland and I am fine on .137 mcg. I know a few people who have to use the upper limit but not too many. It is weight related and also how well you metabolize meds.

Well that doesn't sound so bad then. I need to go on a diet.

Do you still have a thyroid, or was it removed?

 

[Marseeya]

Your thyroid can " die" and stop working completly. When we take the medecine , we are in fact only providing the hormones the gland is not providing. But as we supplement , the gland get lazier and lazier , and could eventually stop. My doctor has me checking my thyroid every 6 to 7 month. The biggest dose of medecine , is equivalent to the dead gland ( I think , and if I am wrong , I hope someone will correct me !)

My mother and sister both are hypo , just like me ( unusual for men , but still existant). It is one of the most common ailment and one of the easyest to treat , but you have to be followed closely by your doctor.

Thanks -- I wasn't sure about that.

My dad is hypo as well (we're not biologically related) and it really surprised him.

 

[Marseeya]

Just wanted to wish you luck. My friend cannot get her thyroid stabilized and has to go for an ultrasound today. It's making her feel miserable.

Thank you -- I'll keep your friend in my thoughts as well. I hope she feels better soon!

 

[dmslush]

My thyroid is completely non functioning. It took me years to find a dr who would listen to me and work with me to get me back where I felt like something better than walking dead. I am currently on 300mcg per day. I take one 250mcg and one 50mcg per day.

 

[dazzled]

I also have a hypo thyroid. My medication isn't too high. My problem has been losing the weight I gained before I was diagnoised. Does any one else have this problem? Any suggestions for me? Thanks in advance.

 

[the kabuki]

I also have a hypo thyroid. My medication isn't too high. My problem has been losing the weight I gained before I was diagnoised. Does any one else have this problem? Any suggestions for me? Thanks in advance.

Know exactly where you're at. Quite honestly, it's been hard. Diet and exercise is about the only way

 

[Christine]

Well that doesn't sound so bad then. I need to go on a diet.

Do you still have a thyroid, or was it removed?

My thyroid was removed (thyroid cancer ). It is much easier to manage the thyroid levels when you don't have a thyroid. When you still have a gland and it decides to work a little bit on Monday, none on Tuesday, party on Wednesday, and crap out for the rest of the week--well, that's tough. A real rollercoaster. Hopefully yours will just DIE soon!

To the poster who asked about weight--I've never had a weight problem with my thyroid. Even when I am totally off meds (for treatment of thyroid cancer), and my TSH is well over 100, I usually get no more than a 6-7 lb weight gain. It goes away once my thyroid is back to being stablized.

I have been told that thyroid disorder will only account for about a 10-15 lb weight gain if it is untreated. The rest is just your eating habits and genetics and so forth. So, if you are properly treated, whatever you are going to lose should have come off within about 3 months of reaching your goal TSH. After that, you really can't blame the thyroid anymore. That's what the doctor tells me anyway. Also, if you take TOO much thyroid hormone you would think you would lose weight? Well, according to my doctor, most of his patients gain weight because they get a ravenous appetite.

 

[Marseeya]

I also have a hypo thyroid. My medication isn't too high. My problem has been losing the weight I gained before I was diagnoised. Does any one else have this problem? Any suggestions for me? Thanks in advance.

Same here! My doctor told me it's unfair, but hypo people have to work twice as hard as normal people to lose weight.

The only thing that has worked for me has been Weight Watchers. When I was able to go to meetings, I did a combination of the meetings and e-tools, which really helped me be successful. I lost 20 pounds earlier this year in a matter of a couple of months. I ended up having to quit going to meetings because of school and without the meetings, I'm sunk.

 

[#1MMFan]

Good luck Marseeya, and if you do need any "unofficial-official" info you know to send me a PM. I always have my medical books on hand if I don't know the answer! I do find in practice we like to check thyroid function tests (TFTs) every 6 months or so. Occasionally for no obvious reason, someone's thyroid levels change and consequently their dose of thyroxine (now apparently called levothyroxine) is altered.

PS. Sorry, my original post, when I reread didn't quite make the sense I wanted it to.. I was rushed because I was having to take my sister to work nightshift... so I have edited appropriately!!!

 

[Christine]

Occasionally for no obvious reason, someone's thyroxine (now apparently called levothyroxine) is altered.

From my own observation, I can tell you that with each new bottle of Synthroid I get (and I get a 90-day mailorder supply), I will get a "new" TSH level. Usually the difference is small, but when I had used generics it varied widely (and when I used Levoxyl). Of all the drugs, Synthroid keeps my TSH the most stable; however, I'm positive that it gets affected by the heat during mailing, or the age of meds that the company sends me, and then I will get differences.

Marseeya, are you using the same brand name of thyroid hormone every month? This is important because, while generics are fine, their bioavailability is different. So if you get a different generic "brand" every month, it could affect your thyroid levels.

 

[Marseeya]

Good luck Marseeya, and if you do need any "unofficial-official" info you know to send me a PM. I always have my medical books on hand if I don't know the answer! I do find in practice we like to check thyroid function tests (TFTs) every 6 months or so. Occasionally for no obvious reason, someone's thyroid levels change and consequently their dose of thyroxine (now apparently called levothyroxine) is altered.

PS. Sorry, my original post, when I reread didn't quite make the sense I wanted it to.. I was rushed because I was having to take my sister to work nightshift... so I have edited appropriately!!!

I don't think my TSH has been tested in over a year, so I should keep on my doctor about it, huh? I'm not good with the numbers, but in 2001, my TSH was 67, then after about a year we had it down between 1 and 2 (norm being something like 0.1-5). It stayed pretty low until now and it was at 25. Bleh. No wonder I've been wanting to do nothing but sleep.

Anyway, thanks for the info! I'll definitely PM you if I have a question and thanks for the offer.

 

[Marseeya]

From my own observation, I can tell you that with each new bottle of Synthroid I get (and I get a 90-day mailorder supply), I will get a "new" TSH level. Usually the difference is small, but when I had used generics it varied widely (and when I used Levoxyl). Of all the drugs, Synthroid keeps my TSH the most stable; however, I'm positive that it gets affected by the heat during mailing, or the age of meds that the company sends me, and then I will get differences.

Marseeya, are you using the same brand name of thyroid hormone every month? This is important because, while generics are fine, their bioavailability is different. So if you get a different generic "brand" every month, it could affect your thyroid levels.

I'm using brand name Synthroid. When I was first diagnosed, I bought Mary Shomon's book and that was one of the things it emphasized, as well as certain foods to avoid and making sure to take the meds on an empty stomach. Have you read any of her stuff?

Do you get your testing done through a doctor, or are they making home tests now?

 

[shannon1219]

I had to have my thyroid removed about 4 years ago because i had multinodule goiters and they could not get a conclusive biopsy. I spent the first year after the surgery trying to get my levals of synthriod right. The weight gain was not as bad for me as the whole hormones being out of whack. I spent a month before the surgery in a state that the doctors called surgical menapause. I was a raging lunatic, then after the surgery they kept changing my doses so one week i felt OK and the next I didn't want to leave bed. Even though it has been 4 years my endocrineologist and family doctor still check levals every six months.

 

[Christine]

From my own observation, I can tell you that with each new bottle of Synthroid I get (and I get a 90-day mailorder supply), I will get a "new" TSH level. Usually the difference is small, but when I had used generics it varied widely (and when I used Levoxyl). Of all the drugs, Synthroid keeps my TSH the most stable; however, I'm positive that it gets affected by the heat during mailing, or the age of meds that the company sends me, and then I will get differences.

Marseeya, are you using the same brand name of thyroid hormone every month? This is important because, while generics are fine, their bioavailability is different. So if you get a different generic "brand" every month, it could affect your thyroid levels.

Yes, I've read Mary's stuff and also had a chance to sit down and talk with her when she came to one of our thyroid cancer support groups (she lives in my area). She's a very nice lady!

I have my thyroid levels checked about 4 times a year, through my doctor. I don't see my doctor each time, he just sends a me a lab order, I go to a lab, and we discuss the results over the phone. Believe me, it is so easy to have your TSH affected by anything that it is really best to check it 3-4 times per year. You must be feeling pretty sluggish with a TSH of 25!

 

[#1MMFan]

TSH 67 huh? Wow, you really were very hypo weren't you! 25 is definitely too high. Get right back to your doctor about it Marseeya, that's not right! It does take a few months for thyroid function tests to change, but you will undoubtedly need your thyroxine dose altered, and TFTs rechecked.