Thyroid issues

[30A Skunkape]

I'm getting the bells and whistles workup next Friday. My TSH was 62 and T4 and T3's pretty much non-existent. Endos are a special group and few and far between from my research. I think my doc will be aggressive and want to treat me from my symptoms as well the numbers, so, I think I'm lucky in that aspect from what I read. Thank you so much for sharing and would you be interested in an internet group for thyroid issues? If so,, maybe we are not so alone

Holy cow, that may be one the highest TSH's I have I ever heard of. You probably did have Hashimoto's as it is the most common cause of hypothyroidism in these parts. The cows are out of the barn though, as I doubt you can do anything but replacement. You really do not need an endocrinologist at this point, just start replacement. An ultrasound of the gland might be appropriate, but I would resist the temptation to go on a five thousand dollar workup when in the end you will be put on levothyroxine anyway. Also, I strongly disagree with the assertion that the TSH is 'worthless' as noted above. In fact, the Sacred Heart lab protocol developed by a panel of panhandle endocrinologists discourages the testing of anything but the TSH unless there is an abnormal TSH value.

Endocrinologists are few and far between here, and to complicate matters one of them was recently in a car crash and out of pocket for awhile.

I would also not waste money on looking at gluten, offbeat diets or that sort of thing. Your thyroid is burnt out, spmething unlikely to be caused by or corrected by dietary factors.

Also, INSIST on your physician specifying generic levothyroxine. The pharma lobbysists managed to get an exepmtion passed that bypasses the traditional Florida law of dispensing generics unless brand name is deemed required. The Synthroid reps claim the brand name stuff is better, but I don't see it.

Good luck. You will be feeling better soon

 

[Alicia Leonard]

Holy cow, that may be one the highest TSH's I have I ever heard of. You probably did have Hashimoto's as it is the most common cause of hypothyroidism in these parts. The cows are out of the barn though, as I doubt you can do anything but replacement. You really do not need an endocrinologist at this point, just start replacement. An ultrasound of the gland might be appropriate, but I would resist the temptation to go on a five thousand dollar workup when in the end you will be put on levothyroxine anyway. Also, I strongly disagree with the assertion that the TSH is 'worthless' as noted above. In fact, the Sacred Heart lab protocol developed by a panel of panhandle endocrinologists discourages the testing of anything but the TSH unless there is an abnormal TSH value.

Endocrinologists are few and far between here, and to complicate matters one of them was recently in a car crash and out of pocket for awhile.

I would also not waste money on looking at gluten, offbeat diets or that sort of thing. Your thyroid is burnt out, spmething unlikely to be caused by or corrected by dietary factors.

Also, INSIST on your physician specifying generic levothyroxine. The pharma lobbysists managed to get an exepmtion passed that bypasses the traditional Florida law of dispensing generics unless brand name is deemed required. The Synthroid reps claim the brand name stuff is better, but I don't see it.

Good luck. You will be feeling better soon

Thanks for chiming in

I'm doing the Synthroid since my doc gave me samples for the first 4-6 weeks and he started me out in the mid-range as far as dosage since my numbers were so freaky. My Gyn found it during my yearly workup that I forced myself to go to and called me freaking out. Told me she got tired just looking at my numbers. Three years ago my TSH was 4.5. My GP reasoned, like you, that no matter the test results, I had to have the meds now. So, next week will be to see the results of the synthroid after four weeks and to test for antibodies and whatever else he thinks I need. He started me out at two .88mcg q a.m., for 2 weeks, dropped me back to .125 q. a.m., and some of my symptoms returned, he boosted me back up to about .180 mcg q. a.m., two days ago and I feel a little anxious. Acccording to the dosing tables and my height and weight, around .150mcg will be the right place and I'm going to scale back to there tomorrow.

I've read varying accounts on TSH testing by patients and doctors. Using the idea that it's the free t4 and t3(is that correct) that is actually available for a person to use and needs to be tested.

Skunk, I already probably know the answer to this, but what is your take on natural thyroid replacement. I mean, I already feel guilty sometimes eating bacon

 

[Susan Horn]

Alicia,

Welcome to the club. Mine crashed about a year ago; tried various doses of synthetic T4 and it wasn' t working so I started on Armour (which contains T3 and T4) about 2 months ago, TSH is almost normal now and I feel stronger every day. I was creeped about the source of it as well, but DANG, I can't be a couch potato the rest of my life. The results have been AMAZING. Hope the extra weight falls off soon; at least I have energy to be physical again after a year of dreading every flight of stairs etc. Nothing works right when the thyroid is wack; be kind and patient with yourself and know that you will feel better.

I suspect the "normal" ranges for TSH may need to be tuned up, b/c based on what I've learned in the last year about Hashimoto's and all things thyroid, I believe mine was acting up as much as 5-6 years ago but TSH levels showed normal until last fall. In my research and speaking with a variety of health care pros, there seems to be some agreement that the norms need revising. For whatever that might be worth.

And with all due deference to Skunk, it couldn't hurt to try going gluten free or reducing it for a while, then reintroducing it to your diet and see what happens. I went GF for months, and then gradually added back. I am now able to tolerate small amounts of it but if I have too much, I'm wrecked for the rest of the day, just miserable. I don't know if it has anything to do with the thyroid or not, I just know a lot of people have gluten issues, and if you're one of those, it would help you feel better to avoid/reduce. The tough bit is, it is REALLY hard to avoid gluten in modern life, but there are folks around town who can help. Gwynn at La Loba makes GF goodies and FTHOI sells a number of GF products that I use. Rice cakes are my new daily bread, LOL.

I have been advised to steer clear of soy protein as it is bad for the thyroid. There's a fancy word for that but I don't remember it at the moment. Some people say stay away from brassicas for the same reason, but my doc said eat LOTS of raw broccoli sprouts and other brassicas every day, the benefits of the antioxidants and sulfur compounds far outweigh whatever harm may come from chowing down on cruciferous veggies. Chandra can grow some REALLY tasty brocco sprouts, very fresh and crisp. I like mine on a rice cake with some hummus, maybe a slice of tomato, and hot sauce.

My doc also told me I'm not allowed to be vegetarian, I must have some high quality (organic free range etc.) meat protein most every day. I don't quite understand the reasoning, but some of it was for iron (beef) and something else had to do with tendency of thyroid folks to have trouble fully digesting other proteins. Wish I could be more specific on that. I can say I've had a weak digestive system as long as I can remember, and now wonder how much of that was tied up with goofy thyroid.

If you get into hormone testing, I'm told the all-day saliva test is the one to use, not the blood tests and not the one-shot saliva test. Not fun, but gives the most accurate assessment throughout the 24-hour cycle. Or so I'm told. When everything crashed, my cortisol, for instance, was all over the map from morning till night, opposite of how it should have been (too low in a.m. and too high in evening) so if we'd only taken one reading at one point in the day, we would not have known that.

Hope some of this helps!

 

[Lake Eastern]

Hey everyone

Turns out I have been having thyroid issues the last few years. I had just been chalking up the reoccurring sinus issues and tiredness to growing older. My doc thinks it may be Hashimoto's thyroiditis, since I had periods where I would lose weight and have energy and other times not. I'll be tested for that next week.

My reason for posting is I have been on a rather high dose of synthroid for three weeks now. I'm very curious about other peoples experience on it. Some-days are better than others. I'd just like to feel somewhat normal again(in the middle) and was wondering how long it took for the meds to work and for you to find balance. My TSH was really high, so my doc thinks it's gonna be awhile before I find the right dose.

Also, anyone know a good endo in the area? I like my doc and trust him, but I've had many nurse friends of mine advise me to seek out an endo. Thanks for any advice or experience you can share with me. Feel free to pm me if you like.

I'm going to encourage my husband to mail you about the synthoid stuff. He had a wreck in about 2000 and started gaining weight, falling asleep, etc. Turned out the thyroid shut down b/c of the wreck. They had to start from scratch to reestablish the proper levels with the synthoid. Long process..

 

[Alicia Leonard]

Alicia,

Welcome to the club. Mine crashed about a year ago; tried various doses of synthetic T4 and it wasn' t working so I started on Armour (which contains T3 and T4) about 2 months ago, TSH is almost normal now and I feel stronger every day. I was creeped about the source of it as well, but DANG, I can't be a couch potato the rest of my life. The results have been AMAZING. Hope the extra weight falls off soon; at least I have energy to be physical again after a year of dreading every flight of stairs etc. Nothing works right when the thyroid is wack; be kind and patient with yourself and know that you will feel better.

I suspect the "normal" ranges for TSH may need to be tuned up, b/c based on what I've learned in the last year about Hashimoto's and all things thyroid, I believe mine was acting up as much as 5-6 years ago but TSH levels showed normal until last fall. In my research and speaking with a variety of health care pros, there seems to be some agreement that the norms need revising. For whatever that might be worth.

And with all due deference to Skunk, it couldn't hurt to try going gluten free or reducing it for a while, then reintroducing it to your diet and see what happens. I went GF for months, and then gradually added back. I am now able to tolerate small amounts of it but if I have too much, I'm wrecked for the rest of the day, just miserable. I don't know if it has anything to do with the thyroid or not, I just know a lot of people have gluten issues, and if you're one of those, it would help you feel better to avoid/reduce. The tough bit is, it is REALLY hard to avoid gluten in modern life, but there are folks around town who can help. Gwynn at La Loba makes GF goodies and FTHOI sells a number of GF products that I use. Rice cakes are my new daily bread, LOL.

I have been advised to steer clear of soy protein as it is bad for the thyroid. There's a fancy word for that but I don't remember it at the moment. Some people say stay away from brassicas for the same reason, but my doc said eat LOTS of raw broccoli sprouts and other brassicas every day, the benefits of the antioxidants and sulfur compounds far outweigh whatever harm may come from chowing down on cruciferous veggies. Chandra can grow some REALLY tasty brocco sprouts, very fresh and crisp. I like mine on a rice cake with some hummus, maybe a slice of tomato, and hot sauce.

My doc also told me I'm not allowed to be vegetarian, I must have some high quality (organic free range etc.) meat protein most every day. I don't quite understand the reasoning, but some of it was for iron (beef) and something else had to do with tendency of thyroid folks to have trouble fully digesting other proteins. Wish I could be more specific on that. I can say I've had a weak digestive system as long as I can remember, and now wonder how much of that was tied up with goofy thyroid.

If you get into hormone testing, I'm told the all-day saliva test is the one to use, not the blood tests and not the one-shot saliva test. Not fun, but gives the most accurate assessment throughout the 24-hour cycle. Or so I'm told. When everything crashed, my cortisol, for instance, was all over the map from morning till night, opposite of how it should have been (too low in a.m. and too high in evening) so if we'd only taken one reading at one point in the day, we would not have known that.

Hope some of this helps!

Wow, we do have a club I craved shrimp the first week(iodine) and then All I wanted the last few weeks was a big, fat, juicy, rare steak. I've eaten a lot of steak and hamburger these last few weeks and am starting to feel the weight gain from it. Many people, I have read, feel the natural replacement has worked better for them. Have you had a problem with availability? AND where do you get your organic meat from? I'd love to find a local source for grass fed beef. I have to step away from the boards for a little while, but I'm going to make us a group when I get back and everyone is free to join. Thank you so much for sharing

 

[Alicia Leonard]

I'm going to encourage my husband to mail you about the synthoid stuff. He had a wreck in about 2000 and started gaining weight, falling asleep, etc. Turned out the thyroid shut down b/c of the wreck. They had to start from scratch to reestablish the proper levels with the synthoid. Long process..

Thanks so much and I'm going to make an open thyroid group tonight, if he or you would like to join

 

[scooterbug44]

AND where do you get your organic meat from? I'd love to find a local source for grass fed beef.

For the Health of It has it and the Seaside Farmer's market egg lady (Renee at Twin Oaks) is selling grass fed ground beef - but you have to preorder.

I think Publix has it too in their Greenwise section, but I don't know the particulars/labeling data.

 

[Franny]

Wow, thanks Alicia for starting this thread! I have been hypothyroid for twenty years and have learned so much from the THY club, lol. My endoc doc is in Atlanta, but have used Dr. Schmidt in Niceville since moving to Fl. in 1995. Very thorough, lab work done in his office, so hassle free. His # is 678-0443. Wish you the best and yes it does get better. Have not had any problems since taking synthyroid, knock on wood.....

 

[librarian]

Someone on one of my other forums with bad insurance and bad thyroid has had really good results for over 5 months (better than when she was on synthroid or armour) with Efra Thyroid she buys from canadian (very legit) pharmacy called cross border pharmacy. she says armour was reformulated and she does better with this.

 

[Alicia Leonard]

For the Health of It has it and the Seaside Farmer's market egg lady (Renee at Twin Oaks) is selling grass fed ground beef - but you have to preorder.

I think Publix has it too in their Greenwise section, but I don't know the particulars/labeling data.

Looks like I'll be shopping in SoWal, Saturday mornings, at least twice a month.

I get my grass fed butter and milk from the same family that sales at Seaside, but they drop it off here for the health food store in DeFunn.