The THYROID Thread

[TinaMcTeer]

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.

Thanks Christine.

I am happy to know that I have somewhere to go to when I have questions. I picked up my perscription (Levothyroxine 200mcg) today, although I can't start taking it until after my scan is done on October 9th. My TSH levels are well above 100. I am hopeful that I will feel at least a little better by the time my trip to DW in January. It seems that I can go for about 4 hours before I get really tired. I understand that this is going to be a long road but I at least know the cause of most of the problems that I have been having. Most of all I want to be able to think clearly. I am sure I will have lots of questions and I want to thank you all in advance. (Ugh, Now if only I can get this darn headache to go away)

 

[Christine]

Your TSH is pretty high!! No wonder you feel so bad. I would say that your gland is in almost complete failure.

I have no gland, due to thyroid cancer, and to prep for a scan I used to have to go off my medication so that I would induce a hypothyroid state. My TSH would go up to 145 after about 6 weeks and I felt ABSOLUTELY dreadful. Fornutately, I only had to function like that for a couple of weeks. How awful for you.

It will take you a long time after your meds to stabilize. You probably won't start to feel anything for about 2 weeks (it has a very long half life and it takes a while to start affecting your body). At 8 weeks you will probably start to get closer to where you need to be and, because you have been so bad off, you may feel great even if your numbers aren't quite there.

Also, since you are so hypo, you may feel jittery for a week or two on the high dose you are starting with.

 

[bdavis]

I was told that I have Hashimotos disease... a burned up thyroid due to an auto immune problem that caused my white blood cells to attack my thyroid. I apparently have a level of .4 whatever that is... almost at a coma state.. i don't know how I lived with the exhaustion and the inability to think clearly. I honestly thought I was losing my mind. Now I am just scared. I don't know what to expect and so far I have noticed a head ache and dizziness in the mornings.. I'm having a difficult time getting out of the bed and it seems worse than before I took the medicine. I have two kids and now I'm terrified. Will it get better?

 

[luvmarypoppins]

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.

Just wondering how your dw is doing? Hope she is o.k.

 

[cruisnfamily]

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.

What is a scan?

I have been told I am borderline hypothyroidism. I don't know which number is which but I know it was 4.62 and the range goes to 4.5. My OB/Gyn referred me to my primary for followup. Primary care Dr wants to wait and check again in 6 months.

I've google the symptoms online and from what I can see, the only symptom I have is the irregular periods...but that could be due to my age, 44.
Edited to add: Just read thru some more of the thread and I see "hot flashes" mentioned occasionally. I do get "warm sweaty moments" quite often these days. I've been assuming they're pre-menopausish. OB/GYN says I am definitely not in menopause. But I've had friends describe their actual hot flashes to me and what I'm having doesn't sound at all like what they experience so I don't think they're menopause related anymore. I don't know if this is thyroid related but I thought I would throw it out there in case it's relevant.

I don't know, just looking for comments and feedback from all of you that have this.

 

[Christine]

Sometimes doctors perform a scan of thyroid gland so they can get an image of it. This is most frequently done when someone has nodules or the gland is an odd size. They give you a small amount of radioactive material in a pill form and they they take pictures of the gland while the radioactive material is in the gland. They are able to see nodules and whether they are "cold" (non functioning) or hot (over functioning). They can also see if areas in the gland accumulate iodine equally. It measures uptake also so they can see how much of the iodine was absorbed and that gives them a clue about functioning.

I'm not sure that it is a common practice for diagnosing hypo/hyper thyroidism, it is mainly used in situations of lumps/bumps.

If you are strictly hypothyroid with no associated autoimmune disorder like Hashimoto's, then your hot flashes should not be attributed to your thyroid condition. If you do have Hashimoto's, this often causes swings in thyroid functions so, technically, if your gland was going beserk one day, you could get hot flashes.

You should also note that, in perimenopause, which I am in also at age 45, hot flashes vary greatly from woman to woman. I mainly get very hot through my face and torso but never below. I also have not actually broken out into a sweat as some report. I just get very red. My coworker has hot flashes that affect her through her hip and thigh area and she gets drenched. So there is no textbook case. Oh, and my last for about an hour versus the quick 5-minute things you read about.

 

[mrsklamc]

Hi, I'm new here! Didn't realize there was a dedicated thyroid thread. I know some of you have posted on my thread from last friday saying I'd been diagnosed with thyroid cancer. At this point most of my questions have been answered (except finding someone who had a positive experience getting their lymph nodes removed,) but I thought it would be good to dig through this thread; looks like there's wealth of knowledge here.

Micayla

 

[TinaMcTeer]

Good news. My Scan came back Negitive. So now just taking the meds to make me feel better. It has already been a week and I am amazed at how much more energy I have.

 

[Christine]

Good news. My Scan came back Negitive. So now just taking the meds to make me feel better. It has already been a week and I am amazed at how much more energy I have.

That's great news!

 

[mrsklamc]

I hope someone can help me-

I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.

Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?

 

[luvmarypoppins]

I hope someone can help me-

I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.

Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?

Oh Micayla, I have been thinking about you and praying for you. Did you have a modified radical or a radical neck dissection. I forgot to say before that mine was radical but they kept the salivary gland. I dont even know what that drug is you are mentioning. I was told by the radiation oncologist to keep taking the synthroid so you dont go hypo and then you get the thyrogen shots 2 days before the scan, l on 2 days before and 1 on the day before all while doing the LID. Then I had the scan after the RAI treatment, lfirst I had to go have a blood test like 3 days post RAI and then the scan. I am not sure of the time that involved. I am just saying are you getting the scan before the RAI?? Also if they say its agressive, then you should definetely ask what agressive variant it is, like mine is columnar cell, there is also tall cell, hurthle cell etc. And if its agressive ask them for the lymph node count of cancerous nodes, like mine was something like 47 removed and 6 were cancer positive. Since mine is so rare, (they only have 1 person a year they see, so I'm it) of course I am interested in others etc. and my rad. onc. decided to give me the 200mci as I told you 150 standard and then 25 for the lymph node spreaad and 25 for the agressive variant, so ask your doctors lots of questions . Blessings to you always.

 

[Christine]

I hope someone can help me-

I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.

Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?

Initially, they like you to be hypo prior to the scan. They are using thyrogen more and more now, but less often with an initial scan. While thyrogen is a wonder drug, it does not have the sensitivity that going hypo does. If you are healthy, you need to go hypo and do your first scan so that they can be sure they are seeing everything they need to. Cytomel is a very short-acting T3 but it does keep the TSH up for a little bit of time. I generally had to be off Cytomel for 2 weeks prior to my TSH getting as low as it could.

I'm sorry to hear of your pathology. Did you get anymore information regarding the type of cells, etc. Why are they calling it aggressive? Please try your best not to worry, even aggressive types have very good outcomes.

 

[mrsklamc]

thanks so much you guys...what is LID?

I thought that they did the scan before they did the radioactive iodine so they could adjust the dose?

Here is what happened..they did the biopsy on 10/1 and they thought it was papillary in one or two nodes at that time. They did a modified radical neck dissection,they removed only 9 nodes and 7 were cancerous. ( I think that they would have removed more but they were the size of quarters rather than peas, so they were fewer in quantity even though they were still the whole side of my neck. She said she was digging for them from my chin bone all the way down to my collarbone) There are BOTH papillary and follicular cancers, it's my understanding that follicular is more aggressive? The surgeon said that since I am young and recovering well, and the cancer seemed to be growing quickly, she didn't want to see them take 8 weeks to do radioactive iodine- BUT as of yesterday the endo wouldn't even see me to schedule the scan for two weeks. He called me this morning and said he would see me tomorrow. I don't know if he just got around to reading my pathology, or what.

 

[Christine]

thanks so much you guys...what is LID?

I thought that they did the scan before they did the radioactive iodine so they could adjust the dose?

Here is what happened..they did the biopsy on 10/1 and they thought it was papillary in one or two nodes at that time. They did a modified radical neck dissection,they removed only 9 nodes and 7 were cancerous. ( I think that they would have removed more but they were the size of quarters rather than peas, so they were fewer in quantity even though they were still the whole side of my neck. She said she was digging for them from my chin bone all the way down to my collarbone) There are BOTH papillary and follicular cancers, it's my understanding that follicular is more aggressive? The surgeon said that since I am young and recovering well, and the cancer seemed to be growing quickly, she didn't want to see them take 8 weeks to do radioactive iodine- BUT as of yesterday the endo wouldn't even see me to schedule the scan for two weeks. He called me this morning and said he would see me tomorrow. I don't know if he just got around to reading my pathology, or what.

Oh, okay. Quite honestly, a mixed follicular-papillary is fairly common. Follicular *can* be a bit more aggressive but not really, it's just a bit different than sleepy, old papillary. When you said "aggressive" I thought there may have been some "tall cell variant" but you have not mentioned that. I do know several with tall cell and it's a little more aggressive but they are doing okay too! I believe luvmarypoppins is dealing with columnar variant of papillary which is pretty rare?

Your doc is just probably more concerned about the lymph node positivity than anything but if you read the thyroid cancer literature you will note that positive lymph node involvement has no worse outcome than no lymph node involvement. The RAI is pretty good at taking care of that.

The LID = Low Iodine Diet.

Generally, many good thyroid docs/nuclear med specialists do NOT like to give a 'tracer' dose of RAI to determine how much to use. This is because even a small amount of iodine in the tracer dose will "stun" your thyroid cells so that when you get a treatment dose, they cells are less avid for iodine and won't take it up as well, thereby, making your treatment dose less effective.

Standard protocol is to get you hypo, get you iodine starved, and with lymph node involvement, give you about 200 mci of RAI. About 10 days after you receive that big dose, they will do a whole body scan to determine if the cancer went anywhere distant (tracer doses don't show that well at all). They will also get a good idea what your uptake was of the big dose. THEN a year later (usually), they will have you do the LID again. They may or may not make you go hypo (and use Thyrogen instead). They will give you a small dose of RAI and see if the thyroid cancer that they blasted this year is gone. So, you don't really know if your "clear" until a year later.

 

[mrsklamc]

Ok this may help me make a lot of sense of things then,

See, it's the surgeon who was telling me about the tracer dose and also who told me that it would then depend how long until we tried to conceive based on the radiation dose. The endocrinologist said it would be a flat 12 months, and also his assistant was telling us yesterday that they *couldn't* move the scan up any closer than six weeks, so maybe this reversed order from the surgeon is where things got confused.

Does it make sense that they would want me to be off thyroid replacements for 6 weeks? Should I expect to be getting fat and be sad and tired for that six weeks?

 

[mrsklamc]

Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?

 

[luvmarypoppins]

The nurse who gave me my thyrogen shots told me, oh this stuff is really expensive and some ins. *** dont like to pay for it, You are getting it because of what you have been through, after the cancer I got a bowel obstruction, lost another 12 lbs, had a resection etc. She said they usually only use this in older people etc. I did read on my hosp. website that they just seem to use thyrogen as standard etc. I have already been told I am having the diet and scan again in the spring, so I would say at least 12 months min. for the family. And they will make you take a pregnancy blood test before the RAI, its standard. Also if you are getting 200, are you staying in the hosp. or at home etc. I know some states have laws etc. I stayed in the hosp. My dh works with radiation and he knew how "hot" I really was.

I lost 20 lbs. in 2 weeks on the LID. mine was a combo of the NIH LID and other stuff. My rad. onc. is pretty strict and I was assigned a nutritionist from the hosp. Its weird stuff, like basmati rice, no potatoe skins, no dairy, no bread with bromated agents, no canned veg or frozen either, but I did see I could have only plain Birdseye Steamfresh, a lifesaver. I used no yolk egg noodles. I also could have Edys raspberry sorbet so that was good. I am glad I was too nauseous to eat food the last thyrogen shot because I was so sick of lettuce etc. I also just bought a lb. package of meat, since I could only have 4 ounces twice a day, I knew that would last for 4 meals etc. Also I would say pig out on anything that is your favorite now so you wont feel like so much in denial later etc.

I am just wondering and maybe christine could answer this - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!

 

[Christine]

Does it make sense that they would want me to be off thyroid replacements for 6 weeks? Should I expect to be getting fat and be sad and tired for that six weeks?

Perfect sense. That is how long it takes for your thyroid hormone to leave your body and for your TSH to go high enough to make a treatment worthwhile.

The first time I went hypo (I was 31) I worked up until the day I had treatment and I gained maybe 3 pounds (the first time is the easiest). I never got that sad/depressed or fat on the 4 times I went hypo, although I did feel pretty bad at the end and I did start to get really paranoid about the scan.

 

[Christine]

Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?

Most people do well with the weight gain when the follow the LID. I think I lost 8 lbs when I did it (I was using Thyrogen though). Otherwise, I didn't really gain a lot of weight and wasn't overly sad. I just felt REALLY lethargic and slow. I couldn't sleep well and I was restless.

 

[Christine]

I am just wondering and maybe christine could answer this - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!

Probably because of the size of your tumor and what they saw when they went in, they decided to do a "radical" neck dissection. My friend had that when they found out he had tall cell variant. Standard procedure is to take out a few. Believe it or not, when I had mine done it was not standard procedure to take any out. So I didn't not have a lymph node check. I could have very well had node involvement but I'll never know. I know when I went back in for my completion thyroidectomy, one node close to the area was enlarged so they removed it but it was fine. It was enlarged because of the previous surgery. If I did have it in my nodes, the RAI took care of it.

As for your comments on Thyrogen, more doctors are using it as standard. I don't know how comfy I am with that because in trial after trial, it doesn't do as well as going hypo. I think in Micayla's case, I am happy they are making her go hypo. But in many cases, using Thyrogen is a blessing and certainly in cases where going hypo can aggravate the cancer you would want to use Thyrogen. It is a very careful balance.

To answer Micayla's question about the conceiving issue, I didn't pay much attention to that because I had just had my second child when I was diagnosed (that SUCKED!!) and that pretty much did me in for awhile. I never planned on 3 kids and my diagnosed clinched the decision. Many people on the thyca listserv have gone on to conceive and have kids. You might want to post there as you will probably get a lot of good feedback there.