The THYROID Thread

[wdwpluto]

Hi all,

I've been having some hair loss and was referred to an endo. My TSH is 4.660, which she says is borderline hypo. She's leaving the decision as to whether or not to medicate up to me. Um...

FWIW, I'm in my mid-30's, have recently been put on B12 shots and vitamin D for deficiencies and recently completed treatment for sweat gland cancer (a non-sun related, non-melanoma skin cancer). I'm an appropriate weight for my height, eat relatively healthy, exercise regularly (I've run 4 half marathons in a little over a year). Beyond the hair loss, I don't tolerate cold well, have gained some excess weight lately (<10lbs), and am rather fatigued (thought I'm not sure if that's more a symptom of an incredibly stressful year). Don't know if any of that info is helpful, but I thought I'd try to give a complete picture.

Any advice would be welcomed, you ladies really seem to know your stuff!

ETA - Also, my cortisol also tested low and she suspected adrenal fatigue. I had, shoot, I forget what it's called, a cortisol stress test? They took blood, gave me a drug, and took more blood after 30 minutes, then after 60 minutes to see if my cortisol was responding appropriately. The test came back normal, so no worries on that front.

[angwill]

Originally Posted by wdwpluto

Hi all,

I've been having some hair loss and was referred to an endo. My TSH is 4.660, which she says is borderline hypo. She's leaving the decision as to whether or not to medicate up to me. Um...

FWIW, I'm in my mid-30's, have recently been put on B12 shots and vitamin D for deficiencies and recently completed treatment for sweat gland cancer (a non-sun related, non-melanoma skin cancer). I'm an appropriate weight for my height, eat relatively healthy, exercise regularly (I've run 4 half marathons in a little over a year). Beyond the hair loss, I don't tolerate cold well, have gained some excess weight lately (<10lbs), and am rather fatigued (thought I'm not sure if that's more a symptom of an incredibly stressful year). Don't know if any of that info is helpful, but I thought I'd try to give a complete picture.

Any advice would be welcomed, you ladies really seem to know your stuff!

ETA - Also, my cortisol also tested low and she suspected adrenal fatigue. I had, shoot, I forget what it's called, a cortisol stress test? They took blood, gave me a drug, and took more blood after 30 minutes, then after 60 minutes to see if my cortisol was responding appropriately. The test came back normal, so no worries on that front.

IMO, I would wait and not start taking meds at a TSH level. 4.660. The reason I would not is because once you start taking meds you will have to take them every day for the rest of your life. That is something that I never thought about before taking meds for hypothyroidism but think about often now. 4.660 not a bad level and I have been higher than that on meds and been considered within range. It might be all that you have been through throwing your body off and if you retest in 6 months or a year you may find your levels and your symptoms improve. That is my advise but others may advise the complete opposite.

[wdwpluto]

Originally Posted by angwill

IMO, I would wait and not start taking meds at a TSH level. 4.660. The reason I would not is because once you start taking meds you will have to take them every day for the rest of your life. That is something that I never thought about before taking meds for hypothyroidism but think about often now. 4.660 not a bad level and I have been higher than that on meds and been considered within range. It might be all that you have been through throwing your body off and if you retest in 6 months or a year you may find your levels and your symptoms improve. That is my advise but others may advise the complete opposite.

Thanks for your thoughts! That's where my endo had me confused - she said "once you're on, you're on for live" but later that we could do a three month trial to see if they provided any benefit. I know that I really need to clarify that with her (and I'm waiting for a call from her) but it's just all so confusing!

ETA: Also, my cholesterol is high and has been creeping up (though it could be hereditary) despite my almost vegetarian diet and exercise. I'm on 40% reduction medication which brought me down about 25 points in 3 months. Just realized I didn't throw that factor out there.

[angwill]

Originally Posted by wdwpluto

Thanks for your thoughts! That's where my endo had me confused - she said "once you're on, you're on for live" but later that we could do a three month trial to see if they provided any benefit. I know that I really need to clarify that with her (and I'm waiting for a call from her) but it's just all so confusing!

ETA: Also, my cholesterol is high and has been creeping up (though it could be hereditary) despite my almost vegetarian diet and exercise. I'm on 40% reduction medication which brought me down about 25 points in 3 months. Just realized I didn't throw that factor out there.

Maybe she meant that they start you on a small dose and then every 3 months they check your TSH again till it is normal and then keep you on that dose for 6 months to a year and test again. Another think I don't like about having to take meds for hypothyroidism is having to have blood drawn to check the levels for life.

I have never had cholesterol issues with my hypothyroidism and I don't remember reading anything about it effecting the cholesterol. I could be wrong and I am sure someone will be correcting me if I am. lol

[wdwpluto]

Originally Posted by angwill

Maybe she meant that they start you on a small dose and then every 3 months they check your TSH again till it is normal and then keep you on that dose for 6 months to a year and test again. Another think I don't like about having to take meds for hypothyroidism is having to have blood drawn to check the levels for life.

I have never had cholesterol issues with my hypothyroidism and I don't remember reading anything about it effecting the cholesterol. I could be wrong and I am sure someone will be correcting me if I am. lol

We decided no meds for now and test again in 3 months. Thanks for your help!

[angwill]

Originally Posted by wdwpluto

We decided no meds for now and test again in 3 months. Thanks for your help!

Good luck in 3 months. I hope your levels will be right on.

[luvmarypoppins]

Originally Posted by wdwpluto

We decided no meds for now and test again in 3 months. Thanks for your help!

Glad they are on top of everything and will be watching you closely.
Wishing you all the best.

[luvmarypoppins]

Micayla - wishing you all the best with the repro. endo on Monday.

I hope you like him/her and that you can both be on the same page.

I am having a thyroid holiday so to speak. After new years its the blood tests, sono and my lovely 6 month endo visit in Jan. Also have the cardiologist and the infusion on my back burners. Dh is traveling again so we will have to do things around his schedule etc.

[mrsklamc]

Thank you...It's excluded from coverage in our insurance, so i found out yesterday that this initial appointment is going to be $400. Of course, it wil be more than worth it if it works, and a kid is far more expensive. I am intentionally not keeping track of our total expenditures for this, I think it would make me ill.

Had a rough day emotionally yesterday... I think just because of the reality that we've gotten to this point...plus I think I'm hyperthyroid cause I've lost about ten pounds, but due to have that checked in a couple weeks again.

[ILoveMyDVC]

Thank you. My scan showed less than 1% thyroid tissue left and Tg went down from 4 right after the surgery to to 1.9 after the Thyrogen and before the scan. Will still be given RAI in January.
Had gallbladder out on Friday. It's been quite an ordeal. Teaching me a lot. Hope I retain the lessons.

[mrsklamc]

Well the appointment with the fertility specialist really threw me for a loop, I figured we had all kinds of injections and things to go through before invitro even came up, the first thing they asked was if we were willing to try it. He says the success rate is so much higher, they prefer to just start with it instead of go through the emotional exhaustion...but I'm not sure we want to do it. Total information overload.

[luvmarypoppins]

Originally Posted by mrsklamc

Well the appointment with the fertility specialist really threw me for a loop, I figured we had all kinds of injections and things to go through before invitro even came up, the first thing they asked was if we were willing to try it. He says the success rate is so much higher, they prefer to just start with it instead of go through the emotional exhaustion...but I'm not sure we want to do it. Total information overload.

Its a very private and personal matter that only you and your dh can decide together. My cousin and friend both went through it and it did not work for either of them. My friends got to adopt a baby from a friends friend they knew. My cousin ended up adopting a boy and girl from Korea.

I do know my cousin ended up donating all the drugs or whatever they had left back to the fertility clinic because they were asked if they wanted to do this because some of the other couples stuff was not being paid for by insurance either.

I think both of them tried it at least twice.

I would def. ask them their success rates because it varies among places etc.

That is why I said before, its such a personal journey. My prayers are with you. (and your dh too).

[WDWDancer]

Originally Posted by mrsklamc

Well the appointment with the fertility specialist really threw me for a loop, I figured we had all kinds of injections and things to go through before invitro even came up, the first thing they asked was if we were willing to try it. He says the success rate is so much higher, they prefer to just start with it instead of go through the emotional exhaustion...but I'm not sure we want to do it. Total information overload.

My husband and I have just started this journey also. We will do another round of fertility drugs next month, and then after we come back from vacation in Feb we will be meeting with them to discuss the next step (IUI or IVF).

Do they think the thyroid (or lack of) is playing into this for you? For me personally they say it is not "common" but the total thyroidectomy can cause the reproductive hormones to go a little crazy and this is what they think is happening.

My prayers are with you and your husband as you start this journey

[mrsklamc]

Originally Posted by WDWDancer

My husband and I have just started this journey also. We will do another round of fertility drugs next month, and then after we come back from vacation in Feb we will be meeting with them to discuss the next step (IUI or IVF).

Do they think the thyroid (or lack of) is playing into this for you? For me personally they say it is not "common" but the total thyroidectomy can cause the reproductive hormones to go a little crazy and this is what they think is happening.

My prayers are with you and your husband as you start this journey

I have no idea as unfortunately we didn't spend much time trying before they found my cancer. Today I am thinking that we might look into a second opinion.

[mrsklamc]

Originally Posted by luvmarypoppins

Its a very private and personal matter that only you and your dh can decide together. My cousin and friend both went through it and it did not work for either of them. My friends got to adopt a baby from a friends friend they knew. My cousin ended up adopting a boy and girl from Korea.

I do know my cousin ended up donating all the drugs or whatever they had left back to the fertility clinic because they were asked if they wanted to do this because some of the other couples stuff was not being paid for by insurance either.

I think both of them tried it at least twice.

I would def. ask them their success rates because it varies among places etc.

That is why I said before, its such a personal journey. My prayers are with you. (and your dh too).

They say 75% is their success rate. I understand the part about emotional exhaustion but it just seems like 4 months of clomid and straight to IVF is a huge step, and I feel that they really pressured us that even trying IUI was a waste of time and money. I just don't know.