The THYROID Thread

[luvmarypoppins]

I think this is an awsome site. We are checking in Old Key West on the 22nd of Aug. We are going this year to celebrate being cancer free. I have had nodules for over a year and a half. I had biopsys done christmas eve and Jan 3. they called to tell me that they were cancer. The doctor at the time who was home on maturnity leave called said not a big emergancy just don't sit on it that it was non aggressive. If i had any question to call the office. After I pulled my self together the next day I called with a recomendation another doctor. I went and saw Dr. Lee and Jan 2th I had my surgury. He came out and told my husband that it was a good thing I didn't wait that it was moderate aggressive. They had to remove one of my paraglands and some of the lympth gland as well because it started to spread. I was in the hospital for 6 nights and 7 days. They couldn't get my calcium level regulated. From the surgury I have a paraylized right vocal cord. They gave me 5% of getting my true voice back. Right now I sound like Minnie mouse (thats what my husband and lot of people say) I had to one round of radiation in March. March 19th I was told I was cancer free. My husband asked me before surgury what I wanted when everything turned out to be okay and I told him I wanted to go to Disney with him and my 2 sons and we are a week and 3 days away.

Thats a great reason to celebrate! If I could ask you a couple of ?? How many lymph nodes did you have out? I had 47 out and 6 had cancer. Did you dr. tell you what the agressive component was? Mine is really agressive I think. The hosp. only has 1 to 2 patients a year with mine - columnar cell variant. What was your radiation dose? I had 200. Did they mention anything to you about injecting foam into your neck to help the vocal chord. I have 1 that they say is weak and my voice is bad sometimes. But also I am attributing that to the other surgeries I have had this year (bad, but not related to the cancer). Everytime they stick the breathing tube down me I take a step backwards etc. Do you have any neck/shoulder pain etc? I not only had the neck dissection but then my jugular vein burst and I almost died so that digging and cutting has messed me up alot too. Cant feel the ear, cant lift the shoulder that well etc. What did you think of the Low Iodine Diet. I have to do it again next year in prep for the scan they told me etc.

Any info would be helpful, thanks.

 

[DisMomme]

Does anyone take their thyroid meds at night? I love my sleep in the morning and have worked my AM routine to allow me to sleep in. Therefore I am eating breakfast within 20 min. of waking. Even if I took my meds as soon as I wake up it won't be on an empty stomach long enough for it to work. I also take calcium and Vitamin D pills with my meals. I am thinking I can either take my thyroid meds at night right before bed or set an alarm for 5AM, take the pill and go beck to sleep (hopefully). Which is better?

 

[chocovrdmicears]

Does anyone take their thyroid meds at night? I love my sleep in the morning and have worked my AM routine to allow me to sleep in. Therefore I am eating breakfast within 20 min. of waking. Even if I took my meds as soon as I wake up it won't be on an empty stomach long enough for it to work. I also take calcium and Vitamin D pills with my meals. I am thinking I can either take my thyroid meds at night right before bed or set an alarm for 5AM, take the pill and go beck to sleep (hopefully). Which is better?

My first test came back in the 30's...next blood test they were down to 11...six weeks later they were up to 42. On my doctors advice I have been taking my medication 1 hour before I even have my coffee in the morning. I have been getting up at 5:00 am every day for 6 weeks! yikes! I just had my blood drawn last Friday and am anxiously awaiting the results. I will let you know if the early hour made a difference!

 

[5lilfish]

I posted this on the community board and was directed over here. I feel a little bit better than I did when Iposted this but I still have all the symptoms to varying degrees.

I was just diagnosed with Hashimoto's Disease after 9 months of suffering from a whacky list of symptoms...and having various other scary things ruled out (MRI's, EMG, bloodword). I've had muscle cramping/twitching/fatigue, mental fog, general overwhelming fatigue, puffy face, throat issues (tightness, hoarseness, sore), and some other things.

I am happy to have some answers. On top of Hashimoto's disease, I am a bit anemic and I have low Vitamin D levels (26, I believe). I've been on a small dose of Lev-something for about 3 weeks now (small dose because while my antibodies are high, my thyroid levels are still ok). I have to say I feel crappy. I am exhausted and just plain do not feel well. There are times I just have to lie down and sleep and there are times I feel like I have been run over by a truck. Also, the muscle fatigue is sometimes horrible...in my arms especially. The worst part, in terms of being annoying and worrisome, is my throat. It just feels tight and like something is pushing on it. It's worse if I lie back. It also affects my talking sometimes.

Is this typical? my levels will be re-tested in a month. Will this get better...because right now this really stinks. I have 5 kids and NO energy. It's beginning to get me down. Also...is it normal for the symptoms to come and go?

Thanks..
Jess

 

[Babypandaroo]

I was just recently taking my synthroid medicine at night too and it doesn't seem to be helping. I am still tired alot and my doctor put me on iron tablets and vitamin c a month or so ago. I still feel like i could sleep for a week. What is the best time for my synthroid tablet? Mind you im not a morning person and my breakfast is usually later

 

[jennz]

I usually take my med in the middle of the night when I get up to go to the bathroom The instructions are 1 hour before eating or 2 hours after eating, so I would say if you haven't eaten 2 hours before bed you're okay. I think (and it's just my thought here....) they say first thing in the morning to make sure it's on an empty stomach.

 

[kathleena]

Some general comments on recent posts:

Time of day doesn't matter. What does matter is what you eat. Wait one hour after taking the pill and wait 2 hours after eating, just like the person before me said.

Synthroid (or levothyroxine, Levoxyl) is not fast acting with regards to symptoms. This is why you have to wait 6-8 weeks for a re-test, to allow your body time to adjust. The TSH level is very slow to respond.

Symptoms lag behind the numbers. What you feel today may be a result of your condition 6, 8 10, 12 weeks ago. This is not a quick fix, you have to give it time.

When the doctor tells you "it's normal" what is the number? Ask them what the TSH is and ask them what the lab range is. Ask for a copy of your test *every time* and record your own numbers in a spreadsheet. If the lab range is .5-4.5 and your number is over 3.0, your doc is out of touch. The endos want the PCPs to treat when over 3.0 to bring it back down closer to 1.5. When I was at 3.3, my doc started me on .25 lebvothyroxine - the smallest dose. I was on it for 1 year and averaged around 1.7-2.0. Then the numbers went up to 3.0 again, and we raised it to .5. Then to .75. Now I'm normalized on .75 to just below 2.0.

Most people who are very sensitive to TSH (not everyone is) feel best if the number is below 2. You need to determine this yourself, but remember - symptoms lag behind. Do not expect a miracle drug here!

The brand you take may have different fillers. You may do better on a different brand. If you go thru three blood tests and your TSH has normalized below 2 and you still feel crappy, as the dr to change the med. It may take a bit to normalize again.

Hope this helps someone.

PS just for credentials - I doctor hopped for 8 years before I found one who would treat my TSH which went from 2.6 to 4.9 during that time. Finally diagnosed with hypothyroid, it was too late. Within two years I was hyperthyroid. I have TSI antibodies which cause Graves disease. Being hypo for so long made them skyrocket. I was 2 years on hyperthyroid meds and then once off for a year, I was stable at around 3.3. But the antibodies were rising again. I had been told that if TSH was kept as close to 1.5 as possible, the antibodies should fall. Four years later and antibodies have fallen from 400 down to 120. They were at 440 before when I went hyper. Thank God I have a great doc who understands and is willing to treat me at a lower number. What is happening with my thyroid is it is slowly dying.

 

[tigercat]

I am new on this thread. I am at a loss right now with my meds. I have Hashimoto's disease. I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years. I have been on Levothyroxine but get Eltroxin. Not sure if that is a generic brand or not. For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach. I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness. Nothing has come up. She tells me I am fine. Well if I am fine why do I get these things???? Now I looked at the sheet the pharmacy gave me and those symptoms are things you should look for. I am nervous about going to the Dr about this as I am sure that she will fluff it off. Can these symptoms be a cause of the meds I am on?
tigercat

 

[KCmike]

My wife was diagnosed with thyroid cancer. They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old). So she had a biopsy by needle and it came back as papillary cancer on one of the nodules. We are both scared. We have three children and consider ourselves still relatively young. We have scheduled the surgery to take out her entire thryoid in two weeks. We have heard that the success rate is very good with this type of cancer. I would be interested in hearing from anyone who has gone through this or a good website for information. I appreciate everyones time for reading this post.

 

[jennz]

I am new on this thread. I am at a loss right now with my meds. I have Hashimoto's disease. I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years. I have been on Levothyroxine but get Eltroxin. Not sure if that is a generic brand or not. For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach. I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness. Nothing has come up. She tells me I am fine. Well if I am fine why do I get these things???? Now I looked at the sheet the pharmacy gave me and those symptoms are things you should look for. I am nervous about going to the Dr about this as I am sure that she will fluff it off. Can these symptoms be a cause of the meds I am on?
tigercat

Are you going to an endo? I would suggest trying another doctor...

 

[jennz]

My wife was diagnosed with thyroid cancer. They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old). So she had a biopsy by needle and it came back as papillary cancer on one of the nodules. We are both scared. We have three children and consider ourselves still relatively young. We have scheduled the surgery to take out her entire thryoid in two weeks. We have heard that the success rate is very good with this type of cancer. I would be interested in hearing from anyone who has gone through this or a good website for information. I appreciate everyones time for reading this post.

KCmike... for you and your wife and family. I had this type of cancer as well, I was 26 at the time. (That was 18 years ago). Get used to hearing "If you're going to have cancer this is type to have." I heard that all the time. There is a very good success rate, you're correct, but it's still the Big C and very scary, at least to me. The surgery itself wasn't too bad. Will she have radiation after? The hardest part, for me, was getting my thyroid meds adjusted. That takes months. Is she seeing an endo?

 

[KCmike]

KCmike... for you and your wife and family. I had this type of cancer as well, I was 26 at the time. (That was 18 years ago). Get used to hearing "If you're going to have cancer this is type to have." I heard that all the time. There is a very good success rate, you're correct, but it's still the Big C and very scary, at least to me. The surgery itself wasn't too bad. Will she have radiation after? The hardest part, for me, was getting my thyroid meds adjusted. That takes months. Is she seeing an endo?

We were told to wait till after the surgery. She will have the iodine treatment about six weeks after the surgery the surgeon said. Did it ever come back for you? Did you have your entire thryoid taken out?

Thanks.

 

[jennz]

No the cancer never came back, but I still have checks. Yes I had my entire thyroid removed and then had radiation. I didn't get sick from the radiation, but it was a high dose and I had to stay in the hospital until I wasn't radioactive anymore. It was for a few nights. I don't know if they still treat it like that. My endo keeps my TSH levels low so that any remaining thyroid cells aren't stimulated (this is common practice w/thryoid cancer patients).

I hope that helps...feel free to ask any other questions here or pm or email me. I know this is a scary time for you all.

 

[luvmarypoppins]

We were told to wait till after the surgery. She will have the iodine treatment about six weeks after the surgery the surgeon said. Did it ever come back for you? Did you have your entire thryoid taken out?

Thanks.

Hi Mike, I know you can't read the whole thread. The thyca web site is good. It also has the low iodine diet that you have to use before radiation on it. My diet was a little different from that as my rad. onc. does the NIH diet and something else really strict combined etc. My whole thyroid came out. They will tell you the stage 1-4. Its based on age also, so your wifes age is great. I am the exception to the rule. My tumor was 12,5 centimeters, huge they told me and already spread to the lymph nodes, Papillary is the best to have and that is what I have too. Unfortunately I have the rare and agressive columnar cell variant so they just have to watch and wait. The endo. told me she thinks it will come back and the rad. onc. says they will just give me more radiation etc. The regular dose is 150 and I got 200. Your kids really need to stay away from your wife for the radiation week at home. Our 3 ds knew the limits etc. You can have her use rubber gloves if she wants to touch the computer keyboard or tv remote etc. Maybe send them to grandparents, neighbors etc. I only had to have my synthroid adjusted once after surgery. I started out 150 and now have 200. I will only take the name brand because of what I read on these boards and I asked the endo etc. Your wife has alot on her side age, caught early etc. Best of luck and tell her to join in when she feels better.

 

[tigercat]

No I am not going to an endo. My Dr doesn't think my thryroid is that bad. I am not sure how bad it is suppose to get before you see a specialist. She just keeps telling me it is probably stress. Everything is stress.
tigercat

 

[angwill]

I am new on this thread. I am at a loss right now with my meds. I have Hashimoto's disease. I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years. I have been on Levothyroxine but get Eltroxin. Not sure if that is a generic brand or not. For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach. I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness. Nothing has come up. She tells me I am fine. Well if I am fine why do I get these things???? Now I looked at the sheet the pharmacy gave me and those symptoms are things you should look for. I am nervous about going to the Dr about this as I am sure that she will fluff it off. Can these symptoms be a cause of the meds I am on?
tigercat

I would suggest finding a new doctor. If you don't trust or believe in them then it's time to move on.

Levothyroxine is the generic version of synthroid so I don't know if the Eltroxine is a brand name?

Your symptoms can be a sign of lots of different things including stress or anxiety so I suppose that is why your doctor tested you for other things. It is good she tested your heart and head rule out something else going on.

I am not a doctor but the symptoms of chest pains, dizzyness, and nausea would be there if you had hyperthyroidism because your body functions would be faster rather than slower with hypothyroidism. This your doctor would know by testing your TSH level. If you thyroid level is within limits your doctor would not think it a symptom of your thyroid. Do you go back and forth with both hypo and hyperthyroidism?

As for the rash and breathing problems I don't know of those being symptoms that should be watched for in hypothyroidism.

I hope you figure out what is going on with you soon.

 

[Christine]

My wife was diagnosed with thyroid cancer. They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old). So she had a biopsy by needle and it came back as papillary cancer on one of the nodules. We are both scared. We have three children and consider ourselves still relatively young. We have scheduled the surgery to take out her entire thryoid in two weeks. We have heard that the success rate is very good with this type of cancer. I would be interested in hearing from anyone who has gone through this or a good website for information. I appreciate everyones time for reading this post.

KCMike,

I was diagnosed with thyroid cancer when I was 31. I also had small children and the finding was incidental. I had also just changed doctors and it was picked up during a routine neck exam.

I am 45 years old now and my cancer never came back; however, I will tell you that it took more than one RAI treatment to get rid of all my tissue. My tumor was only 1 cm but my gland was hard to ablate for many reasons. The best website is www.thyca.org. There is also a listserv you can join (follow the support link on the website) that is great. You will got TONS of support there and all your questions answered. I highly recommend doing lots of reading there prior to your wife's surgery and treatment so that you can make sure that you optimize her care and treatment.

 

[tigercat]

The symptoms that I mentioned are actually mentioned on the sheet the pharmacist gives out with your medication. Since I have been on it for a while I had not received it for years. I had decided to look at it again so went and got a copy from the pharmacist. It listed the breathing problems, chest pains, dizzyness ect. I can't change Dr's as there are only so many Dr's in town and they are all full up. I live in a smaller town and it is a long trip out of town. I am going to my Dr tomorrow so will find out then what she thinks. With Hashimoto's you can go from hypo to hyper.
tigercat

 

[TinaMcTeer]

Hi everyone. I was just diagnosed today with Hypothyroidism. The Doc said my thyroid isn't working. I am going for my first scan on October 8th. I believe I have had it since 2002. I remember complaining after my daughter was born that I couldn't concentrate along with other things.I just have to say that I am thankful that my new GP saw the signs and recomended getting tested. Something my old GP missed. My GP said they have never seen it in someone so youing. I am 29.

 

[Christine]

Welcome to the thread!

Most likely your thyroid failure is due to Hashimoto's thyroidities or just a plain old thyroid failure. Hashimoto's is fairly common after a pregnancy. It is an autoimmune disorder where the body begins attacking the thyroid gland. Most thyroid failure isn't due to anything serious, thank goodness.