The THYROID Thread

[WDWDancer]

Kimmie - Hope you are getting stronger and enjoyed that pasta and cupcake!!

I am off to my family doctor tomorrow. My endo called last Friday and left me a voicemail that my TSH came back at 37.4 (a little higher then she wanted) and we needed to push my Synthroid dosage up, do bloodwork in 6 wks. I called her office and couldn't get past the front desk telling me oh yes make an appointment after the ultrasound, pet, and bloodwork is done you don't need to see her for 6 wks!!

So since the Endo won't release my bloodwork to me I have to have them fax it to the family doctor who won't hand it over unless I have an appointment....not sure how he will be able to answer my questions but we'll see. Its so frustrating I feel like there must be an easier way but I'm to exhausted to think of one! lol

Did any of you have an unusually high TSH after surgery? I was in the 1's before surgery and I didn't come off my medication after....I'm tempted to demand RAI since my TSH is almost at the "acceptable" level!

Thanks for letting me vent - hope you're all doing well

 

[luvmarypoppins]

wdw dancer - I honestly dont remember what my number was, my one original tumor was 12.5 cm and then the secondary tumor on the L side of my neck was 4 or 5 cm.

I know my first follow up showed the remnant. My cancer was really extensive so I knew there was no way I would not have rai and I knew the surgeon could not get all of it etc. I almost died and was in a coma from what he did anyway.

Also, there is no way I would let my gp handle any of my thyroid stuff. The guy was and is totally clueless.

Can your endo refer you to a radiation oncologist, just to see what their opinion is on whether they think you should have the rai or not.

You want to give yourself the best chance of not having the cancer return etc. So you really need to check things out, I am sure it is frustrating already with just these 2 doctors.

You really need a cohesiveness of communication.

I go to a teaching hosp. so I have a "team" between the rad. onc. endo and the surgeon etc. They all contact each other if need be and I totally leave the gp out of everything etc.

Wishing you all the best. I dont know if I would be cofortable with waiting another 6 weeks etc.

 

[luvmarypoppins]

Oh and I forgot to add that the endo said there is no way she is lowering my synthroid any lower until I am at the 5 year mark and this Jan is only going to be 3 years.

Guess I am in it for the long haul My dh did not have a face though.

 

[kimmie]

Hi everyone!

Each day is better for me. I ended up having steak for my birthday and apple pie it was yummy!

WDWDancer hope you can get things straightened out soon.

Luvmarypoppins - hope things go well for you too and feel better soon!

mrsklamc - glad I am not the only one with tastebud issues. It is amazing that I was able to gain 9 lbs in 4 weeks! YIKES! I want my weight down NOW! lol

I am on 100 mcg of levothyroxine. What dose does everyone else take?

I see the radiology oncologist on Wednesday...hoping for the all clear very soon. It is a week tomorrow.

 

[Christine]

kimmie,

I take .137. The lowest dose I've ever taken was .125. It is a very individual thing and it is mildy affected by your body weight. So men will usually take higher doses than woman, larger women will take higher doses than smaller women etc...

 

[kimmie]

Thanks Christine. Atleast now I have a bit of an idea. I see oncology tomorrow. I am going to mention a few things to him.

 

[luvmarypoppins]

kimmie - how did your visit go?

Well I have had a really rough week. I survived the reclast infusion. I dont know if I could go through that again. High fever,dillusional, dehydration,chest pain,bones hurt so bad my dh almost had to lift me out of the chair. It was a nightmare.

And in the midst of this my endo decided to change my bp med. On Friday I woke up and my big toes were so swollen I could hardly walk and in the shower my hands were so swollen I could hardly hold the bar of soap. Of course my dh was leaving for China.

Sat. I decided to stop the new bp med. I was seriously debating whether to go to the er or not. I even took one f the ds percocet from his wisdom tooth surgery.

Now today I am much better and tomm. I am going to the gyn for the strange symptoms I have been having. I hope she does not mention the C word .

I am leaving a voice mail for my endo today so maybe she can pick it up tomm. asking her is she still wants me to come in for a bp check on thurs. which was scheduled due to the new med.

My head is spinning. Tues. going for a mammo.

Christine - saw a lady comment on thy ca that Dr. Ain stressed the relation between breast and thyroid cancer.

Anyones endo or onc. mention this? None of mine have.

 

[mrsklamc]

I truly cannot remember if it was my endo or Dr.Ain or elsewhere but somewhere I read/heard that once you are diagnosed with one type of cancer you have a higher likelihood of other types of cancer. Wherever I heard/read this they said it wasn't certain if that was because of the radiation or because people who have had cancer tend to be heavily tested, and may just be more on top of their health.

ETA- I'm truly sorry you've had such a terrible experience with the reclast. You are so strong to have been through all you have!

 

[Christine]

mo.

Christine - saw a lady comment on thy ca that Dr. Ain stressed the relation between breast and thyroid cancer.

Anyones endo or onc. mention this? None of mine have.

This is all I could find about it (not from Dr. Ain though):

Pre-menopausal women with thyroid cancer are at increased risk for breast cancer 5-20 years later according to MD Anderson Cancer Center. Breast cancer is not associated with an increased risk of thyroid cancer, which suggests that thyroid cancer treatment with post-surgical radio-active iodine (RAI) was the reason for the greater risk.

 

[kimmie]

luvmarypoppins,
I am so sorry to hear that you had such a rough week. I am hoping that this week things will get better for you!

I am doing ok. I am back to the real world now! That's pretty exciting. I am having some issues with the levothryroxine. I have fits of anger and some other issues. Called endo and she upped my meds to 125. I know its still not high enough, but every bit helps. I just am not myself mentally and can't stand some of the things I say and do. I also seem to have some facial ticks now....she says its cause I don't have enough thryoid hormone. NO kidding!
Well, I will keep after her if this level doesn't work. I have an appt in December.

 

[luvmarypoppins]

Well my medical week is continuing.

The gyn was really nice. My endo said I would like her and I did. She feels it is not cancer, but she, of course, said will do a biopsy as she said she has told people this before and after the biopsy it did turn out to be cancer. So that is scheduled for January, the earliest they can do it. Good, I can wait. More invasive procedures, oh joy.

Then they referred me to another female doctor for some other issues I am having. That will be right before christmas.

Then thurs. is the bp re check again. My dh called me from China and agreed that we will not have the endo do any more medicine changing until after our trip to Disney.

I am getting weary of all of this stuff for sure. Oh and of course in January is more blood work, sono and endo visit, the regular 6 month stuff.

 

[1Grumpy9]

I just got back from my endo appointment and once again my thyroid levels are high so she is lowering my dosage. I haven't seen 175mg in sooooo long that it is just weird. In a little over a year, my dosage has been dropped by almost half. I am still struggling with calcium levels, but as she put it as long as I feel ok, go with it. If I start feeling bad, just take some extra calcium.

 

[kimmie]

I am having trouble adjusting to the medication...
I did call my endo and she upped me to 125.

I am going crazy!

I am so mad all of the time.
My stomach is so distended and I am constipated.
I have gained 10 lbs in just over a month.
I am just sick about all of it!

How do you all cope?

I am ready to call her again for some blood work, especially the Free T3 and Free T4. Someone mentioned that the levothyroxine only gives you T4 and if you can't convert it to T3 you can have problems?

If this is how I will feel...forget it! Somethings gotta change quickly!

She said I am feeling this way because I don't have a thyroid...I have read that sometimes the levothyroxine doesn't do it for some people.

Anyone have to switch to another med?

I sure hope someone can give me some guidance.

 

[1Grumpy9]

Kimmi...which med are you on? I was switched about a year ago to Tirosint and it is working so much better than Synthroid ever did. I actually have more energy with it.

It is a struggle to keep a balance esp if you don't have a thyroid. I used to get 90 day supply of meds, but my dosage usually changes every 8 to 12 weeks.

I know what you are going through because I was there and up until these past couple of months, I felt like crap, gained 30 lbs and didn't want to do anything. Check with your doctor about another med because sometimes the med you are taking isn't right for you. They work differently for every person.

 

[kimmie]

Thanks grumpy (I need to borrow your name!)

I am taking Levothyroxine 125 mcg. I am really going mad!

I hate feeling this way.

I am going to call the endo and ask for some blood work. I can't stand myself!

 

[mrsklamc]

Are you on the generic? I would suggest switching to brand name. I'll be totally honest here too- I would do my best to switch endos. Personally- I'm no kind of medical professional- but it just makes me really nervous that first they didn't put you on the diet and now this....

 

[1Grumpy9]

Thanks grumpy (I need to borrow your name!)

I am taking Levothyroxine 125 mcg. I am really going mad!

I hate feeling this way.

I am going to call the endo and ask for some blood work. I can't stand myself!

I was on synthroid from the time I was 7 until just the beginning of this year. After my surgery is when it really wasn't working for me. Also, give your body about 8 to 10 weeks to get the meds in to you system. I know when I get my new meds, I usually go back for a blood work check in 8 to 12 weeks. That gives my body enough time to get the new dosage in my system.

Another trick that my doctore gave me was letting the pill dissolve under your tongue. It will absorb into your body better. I used to do that until now because my meds are a gel cap.

 

[Christine]

Thanks grumpy (I need to borrow your name!)

I am taking Levothyroxine 125 mcg. I am really going mad!

I hate feeling this way.

I am going to call the endo and ask for some blood work. I can't stand myself!

kimmie,

These meds take a LONG time to stabilize in your system. Synthetic T4 has a very long half life which is great when you forget a pill (you won't notice) but bad for when you are trying to get stabilized. You've just had surgery and RAI--you've got a LOT going on and it takes awhile. I am a little surprised they didn't start your right away at .125. That's usually the starting dose for someone with a total thyroidectomy but it's not a huge deal if they start you at .100. Your body is going through some incredible, hormonal changes right now.

 

[kimmie]

Thanks everyone

I am trying to have patience, but it never has been easy for me.
I have an appt. with my endo in December (enough time for things to straighten out), but it seems like such an awful thing to do to someone. Why can't it be a wonderful medication that just works from the beginning?
Then it needs to build up in your system, and if its not right...oopps! grrrrrhhh!

mrsklmac - I know what you are saying. I am giving her a chance, but if I do not get a good vibe when I go in December you better believe I will switch. The problem is I am not in a big city, so my choices are a bit limited.(but no matter - I will be proactive!)
This afternoon I seemed in better spirits..so we will see what tomorrow brings
I still may call and ask for some blood work.

 

[luvmarypoppins]

kimmie - hope you are feeling a little better. The adjustment does take time.

I also do not take the generic and only take the name brand. I dont want to worry about anything in the formulation etc.

Well I didnt get a mammo call back, so I am assuming that is ok, ptl!

The endo on thurs. still does not like my bp numbers. She said she talked to her colleague about me. Um, I know if they do that at the univ. hosp then you are one of their difficult cases, which I always seem to be to all the drs. and surgeons there. She wants to add another med in addition to my reg. bp med. Of course I told her no way until I get back from FL. Didnt say Disney in particular. She would probably look at me like I was a nut case for sure.

I asked her what the side effects of this med would be and she said possibly mild diarrhea. Oh what fun. We shall see. I think she needs a better Plan B for me.

And to pass the the time while my dh is away on his business trip I am finalizing my trip plans. I ordered a wheelchair. I just dont have the strength to walk all over the place and my dh hates the magical express so we get a towncar and I may try to change 2 adrs. One I heard the water at coral reef is dirty? with filtration problems and then I didnt know the MK was open till 1 am on Dec 3rd Ithink, or very late and I made a late epcot adr for Illuminations etc.

Going to Disney and leaving all this medical stuff behind. Priceless!!