The THYROID Thread

[Christine]

That is quite the story!! It really bothers me how much women's symptoms get pushed off for "stress" and the use of SSRIs. That has been a constant issue for me. Each and every time I actually do have health problems. Pisses me off.

I do hope you get the spinal lesions evaluted. Follicular thyroid cancer has a penchant for spreading to the bones, while papillary likes to go to the lungs. Since you have the follicular variant, you need to have that checked. I did know a woman way back on the original AOL thyroid cancer support group that had thyroid cancer mets to the spine. She did end up with some pins in her back but her cancer was controlled and she had no further spread once treated. But she required very close follow up due to the bone mets. I really do think you should push for a biopsy once things calm down for you.

 

[ILoveMyDVC]

I sit here reading this and just know it is going to be in the bones. Bet I don't get any answers until Tuesday. So sorry I am having the scan done in R.I. At Brigham's, they tell the patient what they are seeing throughout the procedures.

 

[ILoveMyDVC]

That is quite the story!! It really bothers me how much women's symptoms get pushed off for "stress" and the use of SSRIs. That has been a constant issue for me. Each and every time I actually do have health problems. Pisses me off.

Yes, yes, yes! It is incendiary.

 

[Christine]

Ahhh...safe for another year! Tg is undetectable and TSH is 0.4.

 

[luvmarypoppins]

Thank you i feel very comfortable with my endocrinologist not so fond of the surgeon was dissapointed with after care at hospital my endo called me last night i went to get my labs done yesterday at a lab near my house as the hospital i went to was not close by i wanted to go to endo office but the surgeon said wanted to get results back same day when i had blood drawn the nurse said would not get them back same day so could of gone to my endo so hope get results bit annoyed going to lab dont know when im comfortable with nurses i know. im finding it hard to care for 3 children as well as my self as i have a problem with the man im married to that put stress on me as i relied more on friends while i was in hospital its hard when you have no one to support you my husband has not spoken to me since night before i went to hospital but i knew i cant relie on him as he is a problem i have lived with for long time i am trying to get better so i will not deal with him right now sorry im a mess .

Just wondering how you are doing and if you got your biopsy report back yet. Update us when you can. Wishing you all the best. Take care. Hang in there.

 

[luvmarypoppins]

Ahhh...safe for another year! Tg is undetectable and TSH is 0.4.

Congrats on the good news Christine. We need to always hear from the long term survivors, gives us all something to look forward to.

 

[luvmarypoppins]

I sit here reading this and just know it is going to be in the bones. Bet I don't get any answers until Tuesday. So sorry I am having the scan done in R.I. At Brigham's, they tell the patient what they are seeing throughout the procedures.

I have read your story and my heart goes out to you. I too was misdiagnosed at first. Said it was great I actually lost 20 lbs. Didnt know why I was so tired and didnt know why I had sharp, stabbing itchy pains (total lack of b12). I finally got some blood tests from him and it showed I had anemia so severe I was hospitalized for a week and had 3 blood transfusions.

In that time I had the colonscopy, endoscopy and stomach motility test. He saw the lymph node sticking out of my neck and said it was swollen and needed to get biopsied.

I decided to find a dr. at the university hospital because they are clueless at our local hospital.

A few more tests and a lot more biopsies and they found the thy ca.

Also like you after the thyroidectomy I couldnt have the full rai because I got a bowel obstruction from my old hernia so they had to operate on that, then it was infected and the wound would not heal and I had the surgeon and oncologist fighting over weather to give me the rai or not.

So my heart so goes out to you. You have so much, too much on your plate right now. I will pray for Gods peace for you during this time.

A friends of mines friend also had your type and it did spread to the bone but she had metal replacements for the affected areas and is doing fairly well for all she has gone through.

Wishing you all the best. Hang in there!

 

[luvmarypoppins]

I just clicked onto some article I wanted to read about Katherine Heigels adopted baby and there was another article there, People I think, that Brooke Burke said she is getting ready for her surgery this week and she just wants people to know that "she is not sick, but fine".

Hmm, wait til she has the rai and see if she is saying that.

I think she needs to do lots more research etc.

 

[luvmarypoppins]

Well we are back from our Disney trip. Our room was nice but had some maintenance issues which my wonderful dh fixed himself.

We had a full balcony and ate breakfast on it twice overlooking the lake sideways.

We saw the new fantasyland. Didnt get a chance to ride the wait was 70 min. standby.

I didnt think Whoopi did such a great job at the candlelight processional.

MVMCP was nice. I dont know if I would do it again for a while though.

Dealt with a nasty cm. I was in the wheelchair watching the parade by LTT and was in the handicapped place. She asked if I could walk and I said, I can but I am sitting now. She said, do you have a red disability card. I said, I have never needed one. Then dh told her to leave me alone and go away because she was making me upset. I did tell her, here look I have cancer and pulled my shirt down by neck and showed her my lovely neck scar and dissection. She then proceeded to hassle the guy next to me in a scooter too. Honestly I think I am going to write Disney about her. At night we were in the same place for the MVMCP parade and had such a wonderful cm. She said I didnt need the card at all etc.

I did a lot of walking though and just used the wheelchair like a walker.

I got a really bad sinus infection on sat. When we got off the plane, ran home and then to urgent care on sunday. The dr. said I need antibiotics, cough meds and nasal spray. Today I went for a mammo. I also had a dental appt. that I cancelled because I couldnt deal with that right now.

Can you believe we actually didnt book another vacation. The bounceback was no room discount just free dining. You have to buy tickets too and we dont need them because we have aps.

The food was so so. Nothing was memorable that much to me. DH favorite was the pot roast at LTT. I liked my salads at HBD and GFC.

Hope everyone is doing well.

 

[rockydek]

I am so happy to have found this thread...Maybe I can get some information.
I just had an ultrasound on my thyroid...My Dr called to set up an appointment with an Endocrologist , as a nodule was found. The appoinment is is for the end of January for a console. Thats all the info I was given..What could this mean?

 

[Christine]

I am so happy to have found this thread...Maybe I can get some information.
I just had an ultrasound on my thyroid...My Dr called to set up an appointment with an Endocrologist , as a nodule was found. The appoinment is is for the end of January for a console. Thats all the info I was given..What could this mean?

The doctor is referring you to an endocrinologist because they are the doctors that deal with thyroid nodules. Your endocrinologist will probably do further bloodwork and get you to the right people for a biopsy if he/she feels it is necessary. You are going in the right direction!

 

[rockydek]

The doctor is referring you to an endocrinologist because they are the doctors that deal with thyroid nodules. Your endocrinologist will probably do further bloodwork and get you to the right people for a biopsy if he/she feels it is necessary. You are going in the right direction!

Thanks so much!

 

[Piggeldy]

Sorry to just butt in like this
I just need a place to whine a little. Just feeling a tad overwhelmed at the moment. And know that you will understand.

I was first diagnosed with Grave's disease in October 2001 (right after going on the pill and returning back from a rather stressful vacation in the US, trying to fly in on 9/11). I was as hyper as one can be - constant trembling, weight loss (about 20 pounds in two weeks), hair loss, mood swings, bad temper, insomnia... you name it, I had it.

I went on medication. Had regular blood tests, a lousy doctor but I got better. I changed my life (including some radical decisions to swith my major from Chemistry to English and split up with my then boyfriend, mostly for not being supportive), my blood work came back too low, I went off medication, I stayed well for years. Life was good.

"Things" just started creeping back into my life about 2 years ago. Weight gain (well, I had just gotten married and they do say you gain), anxiety (I just don't like people, is that a big deal?), panick attacks (it is normal to spend the whole weekend hiding under a blanket, right?), mood swings (I am a woman, it's hormones), fatigue (I had just started a new job, didn't get along with my colleague who has issues), stress (that's what you deal with, working 50 hour weeks and working on a doctorate that is not work related)... just little things. Noting major. Nothing I could really put my hand on. Well, I eventually went to see an new primary care physician, asked to have my thyroid checked and ended with a TSH of 4.3. What was diagnosed as Grave's disease was really the first flare up of Hashimoto's. Wonderful.

Around the same time my little cousin was diagnosed with thyroid cancer, my aunt had thyroid surgery due to Hashimoto's, my MIL had her thyroid removed because of small lumps and a large cyst. Did I mention that my grandmother as well as my grandfather also had their thyroids removed? And that I only know one side of my family...

I am rambling. Sorry.
Well, I went on medication (starting with 25mg of L-Thyroxin, then switched to 50) and suddenly I felt perfect! I had energy, I could do things, I didn't cancel appointments or change plans just because I "couldn't" do them, I didn't worry about crowds, we even went to watch fireworks with hundreds of people and I didn't mind at all, I started losing weight - slowly but steadily (20 pounds over a 6 months period without changing my eating habbits, I do eat rather healthily as it is), I got work done on my doctorate, I didn't sleep 14 to 16 hours on weekends (and still felt tired)... I was how I wanted to be.

For the last few weeks, I feel as I felt before. I notice I am falling back into my old habits. I cancelled something last night that I had been looking forward to for weeks! I couldn't go. I was sitting in my office crying, because I just couldn't do it. I have been gaining weight (obviously you can gain 10 pounds by eating a serving of cereal, a green salad with a tablespoon of dressing, an apple, a joghurt and a cup of soup a day... I guess I should just stop adding sugar to my cup of coffee in the morning I eat less than I ever have and I feel so powerless). I spend every free minute in bed, hiding from the world. I don't answer the phone, I don't answer the door. I haven't had my period for three months. I gag when wearing a turtle neck. I can't concentrate, I make stupid mistakes (I can't even spell anymore and though English is not my native language at least I always felt comfortable in it), I feel like an idiot.

My physician thinks my thyroid levels are perfect. It can't be that.

I feel as if I am going crazy. Either it is the thyroid... or I am sorry, I am depressed. I am sure you could blame my difficult childhood, my stressful work with bad work atmosphere (at least that situation will solve itself in February, my colleage will move to a different department and I won't have to worry about her "issues" any more), working two jobs while trying to get a doctorate, my husband's wish for children (that I don't share at the moment), money issues (we both went to university and are paying back study loans), going off the pill, multiple deaths and health issues in the family... but really, I don't think I am clinically depressed. I don't think I'd even notice those symptoms if it wasn't for the six months during spring/summer that they were completely gone, that I learned - again - who I am.

I have secretly started taking more thyroxine (now taking 62.5 mg every morning), which helped for a while. And am contemplating just trying how it goes with 75mg. What scares me most about that thought is that I would eventually have to tell my physician. When I first went there, he said we would work on a feel-good level and not look at the blood levels too much - but that's what he is doing. Otherwise he's great, very thorough, attentive, caring...

I haven't seen an endocrinologist since 2001 and nobody ever said I should. Can I just ask for that? Can I just ask to try taking more thyroxine? If I tell my physician that though I think I am showing a lot of signs of "mental health issues" I think it comes from my thyroid? I just feel like crap and I want it to go away!

Sorry for complaining. And rambling that much. I just need to let it out. And I simply don't know where else to do so.

 

[luvmarypoppins]

I am so happy to have found this thread...Maybe I can get some information.
I just had an ultrasound on my thyroid...My Dr called to set up an appointment with an Endocrologist , as a nodule was found. The appoinment is is for the end of January for a console. Thats all the info I was given..What could this mean?

Welcome. You are on the right track. Glad you are seeing the endo. They usually take so long to get an appt. with. Wishing you all the best. I am sure the end of Jan. cant come fast enough for you.

 

[luvmarypoppins]

Piggeldy - You sure have been through a lot. I would definetely see an endo. Its been way too long. You said 2001 was the last time? That is over 10 years! They are specialists when it comes to the thyroid.

I dont know how you can increase your own med. dose. You cant really do that here.

Also there is a lot of thyroid cancer and history in your family. Has anyone had genetic testing or seen a genetic counselor. Some thyroid cancers are genetic. I think they were looking at me for the MEM syndrome or something like that.

I dont know if you can go to an endo yourself or you hae to be referred etc. Just make sure they are not a general type of endo and you need to get one that specifically deals with thyroid issues.

Wishing you all the best.

Have you had an biopsies or sonograms or is it just the blood work they look at?

 

[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]

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]

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]

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]

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!