Thyroid - further reading recs ?

[sansdieu]

Feeling particularly blue after seeing my endocrinologist today. I've been on thyroid meds for 4 months now; my TSH is up instead of down; I've lost so much hair I now have bald spots, and I've been gaining weight steadily for over a year. And what does my endo say? That there's nothing she can do for me. Same with my primary doctor; same with the "hair" doctor (other than the suggestion that I should try Rogaine). In fact, other than referring me to each other in a never-ending circle, they really don't seem to care.

Sorry about the rant... Can someone recommend good reading on thyroid issues? Is there a thyroid book that changed your life? That would be a good start ;)

[lablover]

I'm sorry, that is awful! What is your TSH? Is your endo increasing your dosage? I would start poking around thyroid.about.com. Lots of info there.

[SnuggleBuggles]

What med do they have you on?

[KLD313]

Can you switch Drs? It's so hard to find a good endo. There is a yahoo group with some knowledgeable people on it called thyroid support. I second the Thyroid.about.com rec, Mary Shomon is great.

[niccig]

Yes, switch Drs. If your TSH is increasing, your thyroid medicine should be increasing, or they could try another one. Not all meds. work the same for everyone. Plus, 4 months is hardly anytime at all to stabilize TSH levels. It took me closer to 9 months after my surgery to get the right amount and for me to stay there. I was having blood tests every 4-6 weeks to see levels, Dr. would then adjust the amount required. There's a lot of fine-tuning.

Look here for thyroid specialists - be prepared to drive further if you have to get to someone. DH knows that if my endo. stops taking our insurance, I'm going out of network. He's worth the extra $$.
http://www.thyroid.org/patients/specialists.php

I really feel you need to see specialists. Eg. my ENT who did my thyroid surgery was seeing me for my paralyzed vocal fold. After discussing things with my voice therapy professor (back in school to be a SLP), I decided to go for 2nd opinion, and she gave me names of 2 ENTs that just deal with voice disorders. OMG, talk about night and day. The voice disorder specialist saw things that were not picked up by other Dr. and it's going to make my therapy much more specific, and probably more successful. If I do need another surgery, she does this type of surgery all the time, and according to my professor, has great outcomes.

Oh. one question. Are you not eating or drinking anything before/after the medicine? This was stressed to me. Must have empty stomach, so no eating/drinking 2 hours before take it and not eating/drinking 1 hour afterwards. That includes coffee if you take it first thing in the morning. My endo. said if I wasn't going to wait to eat/drink, he would need to give stronger dose. DH's aunt was surprised when we visited and she said I've always taken my medicine with food, then she read her pill bottle, where it says take on empty stomach.

My endo. also wants me to take it at pretty much same time each day. I've swapped to taking it at night time, as the waiting an hour to eat got too difficult and many mornings I couldn't have breakfast before left the house.

[SnuggleBuggles]

Oh. one question. Are you not eating or drinking anything before/after the medicine? This was stressed to me. Must have empty stomach, so no eating/drinking 2 hours before take it and not eating/drinking 1 hour afterwards. That includes coffee if you take it first thing in the morning. My endo. said if I wasn't going to wait to eat/drink, he would need to give stronger dose. DH's aunt was surprised when we visited and she said I've always taken my medicine with food, then she read her pill bottle, where it says take on empty stomach.

My endo. also wants me to take it at pretty much same time each day. I've swapped to taking it at night time, as the waiting an hour to eat got too difficult and many mornings I couldn't have breakfast before left the house.

I asked my endo and I talked about this at my last appointment because I was told 1 hour but the bottle said 30 minutes. I wasn't sure what to follow (I was hoping for 30 since it can be hard to wait an hour!). He said that there are actually only some foods that are a problem but the list was long and it was simpler to just say "don't eat". My new med, Armour, doesn't have anything on it about taking on an empty stomach or waiting. It's actually throwing me all off. I was on Synthroid for 1.5 years and never missed a dose. Now that I don't have strict rules, I am terrible! I like the PM idea- that's a good one!

Beth

[sansdieu]

I'm sorry, that is awful! What is your TSH? Is your endo increasing your dosage? I would start poking around thyroid.about.com. Lots of info there.

TSH is 4 right now, but I had figures varying from 2 to 5 in just the last 4 months. It's all over the place.


What med do they have you on?

Synthroid (brand-name).


Can you switch Drs? It's so hard to find a good endo. There is a yahoo group with some knowledgeable people on it called thyroid support. I second the Thyroid.about.com rec, Mary Shomon is great.

I'm part of the group, but forgot about it; I should have posted directly to the group! It's endo #2 (#3, technically), previous docs wouldn't even treat me, so I'm reluctant to change. Most docs around here, I find, are pretty conservative and won't treat you at all with the 4.0 TSH.

[sansdieu]

Yes, switch Drs. If your TSH is increasing, your thyroid medicine should be increasing, or they could try another one. Not all meds. work the same for everyone. Plus, 4 months is hardly anytime at all to stabilize TSH levels. It took me closer to 9 months after my surgery to get the right amount and for me to stay there. I was having blood tests every 4-6 weeks to see levels, Dr. would then adjust the amount required. There's a lot of fine-tuning.

Look here for thyroid specialists - be prepared to drive further if you have to get to someone. DH knows that if my endo. stops taking our insurance, I'm going out of network. He's worth the extra $$.
http://www.thyroid.org/patients/specialists.php

I really feel you need to see specialists. Eg. my ENT who did my thyroid surgery was seeing me for my paralyzed vocal fold. After discussing things with my voice therapy professor (back in school to be a SLP), I decided to go for 2nd opinion, and she gave me names of 2 ENTs that just deal with voice disorders. OMG, talk about night and day. The voice disorder specialist saw things that were not picked up by other Dr. and it's going to make my therapy much more specific, and probably more successful. If I do need another surgery, she does this type of surgery all the time, and according to my professor, has great outcomes.

Oh. one question. Are you not eating or drinking anything before/after the medicine? This was stressed to me. Must have empty stomach, so no eating/drinking 2 hours before take it and not eating/drinking 1 hour afterwards. That includes coffee if you take it first thing in the morning. My endo. said if I wasn't going to wait to eat/drink, he would need to give stronger dose. DH's aunt was surprised when we visited and she said I've always taken my medicine with food, then she read her pill bottle, where it says take on empty stomach.

My endo. also wants me to take it at pretty much same time each day. I've swapped to taking it at night time, as the waiting an hour to eat got too difficult and many mornings I couldn't have breakfast before left the house.

I'm on my 3rd endocrinologist; the previous docs simply wouldn't treat anyone with the TSH they consider to be normal (I also have Hashimoto antibodies, but that's a different story). This one, at least, is treating me - she was the first one to do any kind of hormonal labs, but she isn't doing any adjustments. In the four months that I've been treated, my TSH has been anywhere between 2 and 5. I don't know where else to find another specialist - I've asked around on various local groups, asked all my physician friends, and they all seem to be leery of endocrinologists in general. I'm prepared to drive anywhere and/or pay extra, but I doubt that would help (I already have to take a full unpaid day off to see this one, so each appointment is super-expensive).

Re: your other questions. I do take it on an empty stomach, but I eat 30 min after taking it (that's what it says on the bottle 30min-1 hr). Think this makes a difference? I never have the full hour in the morning, and seeing how little sleep I get, I can't afford to lose another 30 min of it. I was also wondering about taking it at night - in fact, I asked the doc yesterday, and she said it doesn't make any difference. The problem with taking it at night is the empty stomach part. I have long workdays, hellish commute, and by the time I'm done with putting my daughter to bed and various household tasks, I rarely get to eat before 11pm. If I take it at 1am, is that enough to be considered an 'empty stomach'?

Labels also advise against walnuts and high-fiber foods, but what am I suppose to eat? Processed white flour bread? No fruit or veggies? I simply won't fit through the door if I start eating like that.

[BelleoftheBallFlagstaff]

I cannot take my Levo in the am, so I wait 3-4 hours after eating dinner to tale it. Sometimes changing WHEN you take it helps! Sorry thyroids suck!

[BigDog]

Feeling particularly blue after seeing my endocrinologist today. I've been on thyroid meds for 4 months now; my TSH is up instead of down; I've lost so much hair I now have bald spots, and I've been gaining weight steadily for over a year. And what does my endo say? That there's nothing she can do for me. Same with my primary doctor; same with the "hair" doctor (other than the suggestion that I should try Rogaine). In fact, other than referring me to each other in a never-ending circle, they really don't seem to care.

Sorry about the rant... Can someone recommend good reading on thyroid issues? Is there a thyroid book that changed your life? That would be a good start ;)

I could have written your post. I was diagnosed in early June with Hashimoto's. At that time my TSH was 3.95. Reluctantly, my PCP referred me to an endo, who prescribed Synthroid for me to take. I had a terrible reaction to the Synthroid which I kept calling the endo and complaining about so she switched me to Levoxyl, which was no different for me. I kept pushing to try something else like Armour, Naturethroid, Cytomel, Thyrolar... in the end, the endo said she couldn't do anything more for me, wasn't willing to let me try one of the other thyroid meds out there, and said that she only treats T4 (not T3). She told me that my TSH was down to 2.something so I should just stop taking the Levoxyl altogether, and that the hair loss and high cholesterol that I continued to have was not related to my thyroid (btw, I also had I miscarriage before being diagnosed with Hashi's). I was PISSED.

So I went on a search to find a better endo. I found one about an hour away who I've seen once so far (I go back again in early Dec). He did bloodwork and at that time my TSH was back up to 3.26; he put me on half a grain of Armour which I'm tolerating so much better than the synthetics like Synthroid/Levoxyl. I'm still exhausted, have difficulty concentrating and my hair continues to fall out in mass quantities, but I'm hoping that my dosage just needs to be increased and everything else will fall into place.

I cannot stress the importance of doing research, knowing your facts, and presenting them to your dr. This new endo that I'm seeing will treat your symptoms and not just look at your lab results... AND he's willing to experiment with other thyroid drugs out there (not just the synthetics) and treat T3 along with T4. If you're in the mid-atlantic area, PM me and I can give you his contact info.

Not sure if you've seen this website yet but it has lots of good information:
http://www.stopthethyroidmadness.com/

BTW, I also was told by my dermatologist to start using Rogaine. I used it in my early 20s when my hair was badly falling out (in hindsight I realize it was likely thyroid-related and I didn't even know). The Rogaine worked then, my hair grew back fine. Now in my mid-30s, I'm really reluctant to use it. I started it but then my scalp got so dry and flaky that I stopped, plus I don't have the patience for applying it every day. It just sucks.

Good luck and don't give up hope!

ETA: I definitely think it's important to follow the timeline for taking your meds (well before eating in AM/well after eating in PM), but in your case, I don't think that has anything to do with it. It sounds like you were being mindful of taking it appropriately.

[sansdieu]

I cannot take my Levo in the am, so I wait 3-4 hours after eating dinner to tale it. Sometimes changing WHEN you take it helps! Sorry thyroids suck!

3-4 sounds like a lot, given when I usually eat... But I'm certainly willing to try, if there's even a small chance it might make a difference.

[sansdieu]

I could have written your post. I was diagnosed in early June with Hashimoto's. At that time my TSH was 3.95. Reluctantly, my PCP referred me to an endo, who prescribed Synthroid for me to take. I had a terrible reaction to the Synthroid which I kept calling the endo and complaining about so she switched me to Levoxyl, which was no different for me. I kept pushing to try something else like Armour, Naturethroid, Cytomel, Thyrolar... in the end, the endo said she couldn't do anything more for me, wasn't willing to let me try one of the other thyroid meds out there, and said that she only treats T4 (not T3). She told me that my TSH was down to 2.something so I should just stop taking the Levoxyl altogether, and that the hair loss and high cholesterol that I continued to have was not related to my thyroid (btw, I also had I miscarriage before being diagnosed with Hashi's). I was PISSED.

So I went on a search to find a better endo. I found one about an hour away who I've seen once so far (I go back again in early Dec). He did bloodwork and at that time my TSH was back up to 3.26; he put me on half a grain of Armour which I'm tolerating so much better than the synthetics like Synthroid/Levoxyl. I'm still exhausted, have difficulty concentrating and my hair continues to fall out in mass quantities, but I'm hoping that my dosage just needs to be increased and everything else will fall into place.

I cannot stress the importance of doing research, knowing your facts, and presenting them to your dr. This new endo that I'm seeing will treat your symptoms and not just look at your lab results... AND he's willing to experiment with other thyroid drugs out there (not just the synthetics) and treat T3 along with T4. If you're in the mid-atlantic area, PM me and I can give you his contact info.

Not sure if you've seen this website yet but it has lots of good information:
http://www.stopthethyroidmadness.com/

BTW, I also was told by my dermatologist to start using Rogaine. I used it in my early 20s when my hair was badly falling out (in hindsight I realize it was likely thyroid-related and I didn't even know). The Rogaine worked then, my hair grew back fine. Now in my mid-30s, I'm really reluctant to use it. I started it but then my scalp got so dry and flaky that I stopped, plus I don't have the patience for applying it every day. It just sucks.

Good luck and don't give up hope!

ETA: I definitely think it's important to follow the timeline for taking your meds (well before eating in AM/well after eating in PM), but in your case, I don't think that has anything to do with it. It sounds like you were being mindful of taking it appropriately.

Thanks! I have Hashimoto antibodies as well (and 2009 ultrasound showed evidence of Hashimoto as well), but that fact is routinely ignored until I bring it up (and brushed off when I do).

How did you go about finding a good endo? Are there local forums for thyroid sufferers? I'm in Boston, where we have more doctors than stray dogs. I can't understand *why* it's so difficult to find one.

[tiapam]

I second the rec for:

stopthethyroidmadness.com

I've never ordered the book, I just read online, but I think I will get it soon. Another book that I like is The Thyroid Solution by Ridha Arem. Also, Solved: The riddle of illness by Stephen Langer.

http://www.amazon.com/Solved-Riddle-Illness-Stephen-Langer/dp/0658002937

This is an awesome book, this doc uses the basal temp test a lot. He says 40% of his total patients (NOT just thyroid patients) benefited from taking thyroid supplements! the way US docs treat thyroid now is a national health care crisis and crime IMO.

As for docs, I have never had satisfactory treatment from an endo. And I am also in a major metro area. I just started seeing an integrative physician. He switched me to Armour. This is only the second time I have tried natural, I was on Naturthroid(sp?) once before and had great but not lasting results. This new doc has ordered tests nobody else ever has. I feel a slight improvement and hope to feel even better after an increase and other tweaks. He did speak to me a lot about diet, supplements and lifestyle.

STTM also has good advice on finding a doc:

http://www.stopthethyroidmadness.com/how-to-find-a-good-doc/

I have always been happy with DO's even when chosen at random. But of course they have to be willing to treat your thyroid problem.

I do agree with PPS that four months is nothing when trying to get this right :(. I know that is not what you want to hear, but is the truth.

FYI, I put my pills on my nightstand in the child safe bottle. i usu wake up (often due to dry eyes) or am woken up around 5/6/7 AM and I take the pill right away and can usually go back to sleep or at least stay in bed for a bit. I turn the bottle upside down so I can see that i took it the next time i wake up and then get out of bed.

Hugs to you, it is so hard to try and get this fixed when you have it! If there is someone in your life who can help you with all of it, that would be ideal. Right now, I feel overwhelmed by one of the take home lab tests the doc gave me and it is now overdue so I asked DH to help me look over it tonight and hope to do it tomorrow. It is a saliva test, I believe it will show adrenal and cortisol levels, which my doc and STTM among others think can make it hard to treat thyroid issues.

[tiapam]

I asked my endo and I talked about this at my last appointment because I was told 1 hour but the bottle said 30 minutes. I wasn't sure what to follow (I was hoping for 30 since it can be hard to wait an hour!). He said that there are actually only some foods that are a problem but the list was long and it was simpler to just say "don't eat". My new med, Armour, doesn't have anything on it about taking on an empty stomach or waiting. It's actually throwing me all off. I was on Synthroid for 1.5 years and never missed a dose. Now that I don't have strict rules, I am terrible! I like the PM idea- that's a good one!

Beth

How are you doing on the Armour? I notice a small difference so far, 11 days in, which is encouraging as I am only on 1 grain right now. Mostly I feel more clear headed. I have been able to clean up after dinner without getting sidetracked every night since Friday. That is seriously huge for me. And I was super productive today, going through a bunch of crap I hid when we had party guests coming. Before today I had no desire to even touch any of it. My thinking is more focused and linear, is the best way I can describe it. I am probably also less tired, that is def part of it, but the improvement in brain function is really key for me.

[SnuggleBuggles]

So far I feel really good on it. My mood is a lot better and I never thought it was bad to start! Just a noticeable difference. Weight...still stuck and I really put in a good amount of work. I really hope the labs I get in 2 weeks will show I need just a little more because I think that will really get things where they need to be.

Beth

[niccig]

Look here and see if someone is near by
http://www.thyroid.org/patients/specialists.php

My Dr. isn't listed on there, but when I called one that was, he wasn't available but a colleague in same office was.

My Dr. is at a teaching hospital. He's told me most people feel best with TSH around 1.5. If I get to 2, I start to have symptoms, so the goal is to keep me at 1.5. I have had TSH in the low 4's and I was flat on my back with no energy...keep trying to find someone that will treat you.

And this is why I will never leave my Dr, my first endo. was like your's saying my levels were normal and they were not.
I hope you can find someone that will adjust your medication.

[niccig]

One more thing to mention is realistic expectations.

My Dr, who is a DO, was very upfront telling me that it might take some time to get medication right for me. He also told me that as good as the substitutes are, they are not 100% match to what the body produces. He said I would not feel like I did before my thyroid problems. But he would work with me to get me as good as I could be and it would be a new normal.

Because my Dr. was upfront I was able to deal with back and forth I've had to do to get medicine to point where majority of my symptoms are gone.

Other endos. I saw told me "it's easy, just take 1 pill a day and you'll be back to normal." That's bullsh$t. You won't get back to exactly how you felt before this happened, and it's not easy to get to a point where things are much better for you.

[sansdieu]

I second the rec for:

stopthethyroidmadness.com

I've never ordered the book, I just read online, but I think I will get it soon. Another book that I like is The Thyroid Solution by Ridha Arem. Also, Solved: The riddle of illness by Stephen Langer.

http://www.amazon.com/Solved-Riddle-Illness-Stephen-Langer/dp/0658002937

This is an awesome book, this doc uses the basal temp test a lot. He says 40% of his total patients (NOT just thyroid patients) benefited from taking thyroid supplements! the way US docs treat thyroid now is a national health care crisis and crime IMO.

As for docs, I have never had satisfactory treatment from an endo. And I am also in a major metro area. I just started seeing an integrative physician. He switched me to Armour. This is only the second time I have tried natural, I was on Naturthroid(sp?) once before and had great but not lasting results. This new doc has ordered tests nobody else ever has. I feel a slight improvement and hope to feel even better after an increase and other tweaks. He did speak to me a lot about diet, supplements and lifestyle.

STTM also has good advice on finding a doc:

http://www.stopthethyroidmadness.com/how-to-find-a-good-doc/

I have always been happy with DO's even when chosen at random. But of course they have to be willing to treat your thyroid problem.

I do agree with PPS that four months is nothing when trying to get this right :(. I know that is not what you want to hear, but is the truth.

FYI, I put my pills on my nightstand in the child safe bottle. i usu wake up (often due to dry eyes) or am woken up around 5/6/7 AM and I take the pill right away and can usually go back to sleep or at least stay in bed for a bit. I turn the bottle upside down so I can see that i took it the next time i wake up and then get out of bed.

Hugs to you, it is so hard to try and get this fixed when you have it! If there is someone in your life who can help you with all of it, that would be ideal. Right now, I feel overwhelmed by one of the take home lab tests the doc gave me and it is now overdue so I asked DH to help me look over it tonight and hope to do it tomorrow. It is a saliva test, I believe it will show adrenal and cortisol levels, which my doc and STTM among others think can make it hard to treat thyroid issues.


Thank you; I'll def order the books!

[sansdieu]

One more thing to mention is realistic expectations.

My Dr, who is a DO, was very upfront telling me that it might take some time to get medication right for me. He also told me that as good as the substitutes are, they are not 100% match to what the body produces. He said I would not feel like I did before my thyroid problems. But he would work with me to get me as good as I could be and it would be a new normal.

Because my Dr. was upfront I was able to deal with back and forth I've had to do to get medicine to point where majority of my symptoms are gone.

Other endos. I saw told me "it's easy, just take 1 pill a day and you'll be back to normal." That's bullsh$t. You won't get back to exactly how you felt before this happened, and it's not easy to get to a point where things are much better for you.

True that. At this point, I'd be happy just to not be getting steadily worse.

[sansdieu]

Look here and see if someone is near by
http://www.thyroid.org/patients/specialists.php

My Dr. isn't listed on there, but when I called one that was, he wasn't available but a colleague in same office was.

My Dr. is at a teaching hospital. He's told me most people feel best with TSH around 1.5. If I get to 2, I start to have symptoms, so the goal is to keep me at 1.5. I have had TSH in the low 4's and I was flat on my back with no energy...keep trying to find someone that will treat you.

And this is why I will never leave my Dr, my first endo. was like your's saying my levels were normal and they were not.
I hope you can find someone that will adjust your medication.

My current endo is ON the list. What does that mean? Is she supposed to be one of the good ones? She's at the teaching hospital, too (most hospitals in Boston are teaching hospitals, anyway), and I actually can't stand that - I never see her for more than a few seconds; instead, it's a new student/ fellow each time who takes history (from the beginning) and then does his/ her best to report it back to my doc. Argh!

*EVERY* endo I've met seems to think a TSH of 4 is perfectly normal. I've asked over and over and over again about the AACE recommendations from nearly 10 years ago, and they just brush me off.