I want to know about your thyroid--or missing thyroid

Aray82

Since apparently this is getting to be pretty common in women I thought I'd ask here while I'm waiting for my next round of pain meds to kick in...I just got my thyroid removed yesterday because of a malignant tumor which can come back if the whole thyroid isn't taken out. I'm so grateful it was caught before it spread and became full-blown cancer (mostly thanks to FI who would not stop nagging me until I got a second opinion!) and I'm glad to be feeling better. However, I'm also a bit nervous about the thyroid medication and the process of having to adjust the dosage until its right for me. I've been told it might take awhile to get it right and in the meantime there might be some side effects like weight gain, hair brittleness, mood swings, etc.

1) Does anyone take thyroid meds for a missing or defective thyroid? How long did it take for the doc to figure out the right dosage?

2) Any must-see mindless tv shows or movies I should be watching during recovery over this next week?

Simky906

I don't personally have thyroid issues, but my grandfather was diagnosed with a major thyroid deficieny about a year and a half ago. He is now on l-thyroxine. (Pretty sure that's what it's called.) He had to have his dosage adjusted several times over the course of about six months before they found the correct dosage. And when he went back to the doctor last week they did actually up it a little more. (Of course, he is 87.) Just be very clear to your doctor as to how you're feeling and be willing to work on it since everyone's body can react a little differently. As for the TV shows, if you're a British TV fan I recommend Keeping Up Apperances- it's a pretty ridiculous early nineties comedy (and it is on Netflix). So glad to hear you caught it before anything spread- best of luck with your recovery!

larrygaga

I don't know about thyroid but you should seriously watch downton abbey if you haven't.

HisGirlFriday13

My SIL had her thyroid removed as a teenager, so I don't know about brittle hair or weight gain or anything like that. She takes a synthetic thyroid medicine now, and it seems to be working.

The only problem she had that I know about is that apparently the thyroid plays a role in breastfeeding, and she had enormous trouble breastfeeding, and eventually gave up on it, because it was so hard. The doctors told her that it was probably because of her thyroid, and that she should expect to have that problem in the future.

Aray82

Simky906 said:

I don't personally have thyroid issues, but my grandfather was diagnosed with a major thyroid deficieny about a year and a half ago. He is now on l-thyroxine. (Pretty sure that's what it's called.) He had to have his dosage adjusted several times over the course of about six months before they found the correct dosage. And when he went back to the doctor last week they did actually up it a little more. (Of course, he is 87.) Just be very clear to your doctor as to how you're feeling and be willing to work on it since everyone's body can react a little differently.

As for the TV shows, if you're a British TV fan I recommend Keeping Up Apperances- it's a pretty ridiculous early nineties comedy (and it is on Netflix).

So glad to hear you caught it before anything spread- best of luck with your recovery!

Thanks--trying to be prepared that this will take time to adjust. It's just so crazy that you can actually completely replace a gland in your body with hormones!. I used to watch keeping up appearances with m family growing up--that's a good one!

Aray82

larrygaga said:

I don't know about thyroid but you should seriously watch downton abbey if you haven't.

Ah yes--sadly I'm caught up with downton so I have to wait for next year! I've heard good things about call the midwife, which is also now on netflix.

Aray82

HisGirlFriday13 said:

My SIL had her thyroid removed as a teenager, so I don't know about brittle hair or weight gain or anything like that. She takes a synthetic thyroid medicine now, and it seems to be working.

The only problem she had that I know about is that apparently the thyroid plays a role in breastfeeding, and she had enormous trouble breastfeeding, and eventually gave up on it, because it was so hard. The doctors told her that it was probably because of her thyroid, and that she should expect to have that problem in the future.

When I first found out the news I was asking about being able to start a family in a year or so--hadn't even thought about breast feeding! Good to know that's something I should be prepared for.

phira

My best friend from high school had her thyroid removed when she was 18 for the same reason. She's had some trouble with her meds, almost entirely because she has crappy insurance and she's definitely one of those people who gets exhausted trying to find decent doctors or convince her insurance company to pay for stuff. So she's had to switch synthetic hormones a bunch of times, and she also tends to wait till she feels pretty crappy before having her dosage adjusted.

Another friend still has her thyroid but is being treated for hypothyroid, and her mother had her thyroid removed. She said that her mom had to get her meds adjusted every 6 months or so for a long time, but eventually she didn't need to go as often. It's not a huge deal; they just adjust your dose every so often so you always feel as good as you should. My friend herself had a lot of trouble conceiving until she got her thyroid checked out, and now she's at 38 weeks

CMGragain

My cousin had thyroid cancer years ago.  She is in good health, and takes medication.  Her only complaint is when she has to go off the meds for tests. 

melbelleup

Not a person missing one, but my dad is. It took about 5-6 months for them to get him on the right dosage. Even then, he goes for blood work often to make sure it's correct and sometimes it changes based on that.

phira

Oh right, forgot about the TV recommendations!

Veronica Mars is on Amazon Prime Instant.

Psych and Supernatural are on Netflix Instant (although I can only recommend the first 5 seasons of Supernatural; I stopped watching halfway through season 6. I hear it picks up, but I don't know from experience).

And of course DOC-TOR WHOOOOOOOOOO. DOC-TOR WHOOOOOOO (singing along to the theme song).

Aray82

phira said:

Oh right, forgot about the TV recommendations!

Veronica Mars is on Amazon Prime Instant.

Psych and Supernatural are on Netflix Instant (although I can only recommend the first 5 seasons of Supernatural; I stopped watching halfway through season 6. I hear it picks up, but I don't know from experience).

And of course DOC-TOR WHOOOOOOOOOO. DOC-TOR WHOOOOOOO (singing along to the theme song).

These are all choices FI would enjoy as well! Maybe I can convince him to star doctor who from the beginning with me. I've been trying to watch the most recent doctor with him, but it just takes so long to get everything explained to me.

silver0319

I had a friend In college who had her thyroid removed when she was in HS. She maintained an active and somewhat healthy lifestyle, and had very little difficulty managing her weight. 

I have my thyroid, but it doesn't function properly. I have Hashimoto's thyroiditis (hypothyroidism autoimmune disorder), and my TSH levels fluctuate more frequently than I would like. A good endocrinologist will help manage your meds and levels. My endocrinologist likes to test every 3-6 months. I don't have any issues with brittle hair, but I can definitely tell when my levels are off by the  amount of new hair growth (or "baby hairs" as my stylist calls them). 

Aray82

Musikalbunni said:

I got my thyroid removed when I was 25 for the same reason you described. Basically been on synthetic thyroid meds ever since. I've had my dose adjusted over 3 times. Now I'm at a dose that works.

Good to know! I've heard from people that it takes a long time, and even then it can change after a few years. I've heard so many different kinds of side effects, many that could just be related to stress in general, so I'm worried about not recognizing mood and energy level changes as thyroid issues rather than stress. When Meds weren't working, was it pretty clear that it was thyroid-related?

Aray82

silver0319 said:

I had a friend In college who had her thyroid removed when she was in HS. She maintained an active and somewhat healthy lifestyle, and had very little difficulty managing her weight. 

I have my thyroid, but it doesn't function properly. I have Hashimoto's thyroiditis (hypothyroidism autoimmune disorder), and my TSH levels fluctuate more frequently than I would like. A good endocrinologist will help manage your meds and levels. My endocrinologist likes to test every 3-6 months. I don't have any issues with brittle hair, but I can definitely tell when my levels are off by the  amount of new hair growth (or "baby hairs" as my stylist calls them). 

Ah yes--TSH was a new word I learned today. It's so strange that there are so many possible symptoms of thyroid issues, new hair growth and brittle hair, weight gain, etc. Good to know that it's manageable, even if it needs readjustment. It really does help to hear of more and more people going through the same thing and managing it well.

Aray82

shrekspeare said:

I also binge watched The Returned, which is the French version of Resurrection. I think there were two or three Knotties who recommended it, and it lived up to my expectations. It was really unsettling. If you don't mind subtitles, check that out!

Perfect--sounds like something FI would enjoy too. I might save unsettling movies for when I'm feeling just a little bit stronger than I am now though :P

Aray82

melbelleup said:

Not a person missing one, but my dad is. It took about 5-6 months for them to get him on the right dosage. Even then, he goes for blood work often to make sure it's correct and sometimes it changes based on that.

Yeah they mentioned periodic bloodwork, which used to make me feel faint at the very mention of it, but now that I'm having bloodwork every couple of hours at the hospital I'm getting to be (almost) a pro. Almost. Bloodwork still sucks but I'm glad to hear your dad is able to manage it successfully.

Aray82

CMGragain said:

My cousin had thyroid cancer years ago.  She is in good health, and takes medication.  Her only complaint is when she has to go off the meds for tests. 

Ugh! That'd be a drag to have to stop taking something you really need for testing.

Aray82

phira said:

My best friend from high school had her thyroid removed when she was 18 for the same reason. She's had some trouble with her meds, almost entirely because she has crappy insurance and she's definitely one of those people who gets exhausted trying to find decent doctors or convince her insurance company to pay for stuff. So she's had to switch synthetic hormones a bunch of times, and she also tends to wait till she feels pretty crappy before having her dosage adjusted.

Another friend still has her thyroid but is being treated for hypothyroid, and her mother had her thyroid removed. She said that her mom had to get her meds adjusted every 6 months or so for a long time, but eventually she didn't need to go as often. It's not a huge deal; they just adjust your dose every so often so you always feel as good as you should. My friend herself had a lot of trouble conceiving until she got her thyroid checked out, and now she's at 38 weeks

Congrats to your friend! We do want to start a family in a year or do and I was wondering how/if this would affect conception. Insurance will be a PITA once I graduate this summer but hopefully I can find a plan while job hunting that will cover my meds and endocrinologist visits without much hassle. Hopefully :P

Sugargirl1019

I've been on Synthroid since I was 16! Only recently did I have to increase my dose by a lot (I'm 24) and the doctor said it was because my body has settled down in growing and my metabolic needs had changed and i was basically getting older lol. I have noticed I am more tired and maybe slight weight gain (5-8 pounds maybe?) if my meds are too low. Otherwise it is the easiest thing in the world to deal with. I never ever worry! Just go for blood tests like a good girl and it'll be fine! I get mine drawn every 3-6 months because I have type 1 diabetes also.

Thyroid medicine needs to be taken on an empty stomach, 30 minutes before food. But I take mine at bedtime, and have no problems as far as I know.

beharrington

I have my thyroid but it doesn't work.  I go in annually for bloodwork and adjustments.  Now that I'm off BC, I should probably check back sooner because it's obvious they aren't working (ridiculous weight gain and sweating).  I'm going to have them check for Hashimoto's at this visit.  I have narcolepsy (it always cracks me up when they ask if I'm still tired or if the thyroid meds are helping) and it was recently determined that it is, in fact, an autoimmune disease/disorder/whatever the heck they decide to call it this week.

KDM323

I have 2 autoimmune thyroid diseases - Hashimotos and Graves diseases.  Because of the fact that  I have conflicting autoimmune thyroid issues, I have to have blood work taken rather regularly and my dosage adjusted depending on what my TSH, FT3 and FT4 levels are.

My best advice is to make sure you have a good endocrinologist who listens to you an takes your symptoms/how you feel seriously. 

emcme22

I don't have thyroid issues although I've been tested for it many times. My aunt had her thyroid removed and if I'm remembering correctly had trouble conceiving because if the thyroid issues, which the meds fixed. She hasn't really had any side effects or any big med adjustments but did have some in the beginning.

My cousin also has no thyroid but her situation is a little different because she was born without it. The meds, I think something like synthroid?, work well but she has had many adjustments probably due to her age.

RebeccaB88

My thyroid just randomly stopped working. I take 2 thyroid meds every day - Synthroid (T3) and Cytomel (T4). I have to have them both or I'm a useless, stupid lump. I don't just have fatigue when I'm off them, I do nothing but sleep. I can't work. I have severe brain fog (like, I once walked directly into a wall because it didn't occur me to walk through a door, and I would ask the same question over and over again, not remembering asking or the answer). My hair falls out in handfuls. I itch all over. So yeah, the meds are really important.

It took about 6 months of adjustments to get me in a good place initially, then we adjusted about once a year for a few years. Now I've been on the same dose for I can't remember how long...7 or 8 years?  Having the extra T4 is essential for me. I can do short periods of time without the T3, but within a few days of not having the T4, I'm borderline bedbound. I just simply can't wake up and function. Make sure your endocrinologist runs a full thyroid panel on you EVERY TIME. Not just your TSH. I had a perfectly normal TSH for years and no one could figure out what was wrong with me (was offered SO many antidepressants), until one doctor ran the full panel, and it was incredibly abnormal, but my TSH was very normal. If they won't do it, leave and find one who will. Thyroid disease is not a cookie cutter thing. It's different for everyone, and each case needs to be evaluated individually. For instance, a lot of doctors consider me over-replaced, but if we go any lower, I am extremely symptomatic. And I'm not over-replaced on paper, but because I'm slightly out of the norm, they assume I'm being treated improperly.

Aray82

Musikalbunni said:

Aray82 said:

Musikalbunni said:

I got my thyroid removed when I was 25 for the same reason you described. Basically been on synthetic thyroid meds ever since. I've had my dose adjusted over 3 times. Now I'm at a dose that works.

Good to know! I've heard from people that it takes a long time, and even then it can change after a few years. I've heard so many different kinds of side effects, many that could just be related to stress in general, so I'm worried about not recognizing mood and energy level changes as thyroid issues rather than stress. When Meds weren't working, was it pretty clear that it was thyroid-related?

The most common side effect I have had is extreme lethargy. Some people have partial function of their thyroid or it's not producing enough thyroid hormones. But in my case, I have no thyroid, so I depend on medication 100%. When dose was low (we are talking 125mcg) I feel really tired. It's hard to describe how tired I feel because it's just so extreme. 

I am on 150mcg now, and I think I might need a little more. Visiting my Endocrinologist in a month - let's see how that goes. 

As far as moods go, I get cranky when I am sleepy. My skin gets dry and itchy sometimes. I never had that problem before my thyroid was removed, so I attribute dry skin, lethargy, and mood changes on Thyroid meds. 

You might need to go on a low-iodine diet soon after that for a few weeks. I can give you some low-iodine recipes. 

ETD: because I didn't catch that she just got out of surgery. 

OK, this seems like something i woild notice. Extreme tiredness and crankiness, no matter how much sleep I got the night before, was definitely something that was building up in the months before it was discovered...like, to the point where I was constantly snapping at FI while getting ready for work, then applogizing later wondering what got into me. My legs can get so dry and itchy that I need a steroid cream to sleep at night but the dermatologist said it was from living in the southwest for the last five years. Hopefully tis stuff will start getting better if the meds are working!

I would love some low iodide recipes! In 6 weeks or so I'll get radioactive iodide that will hunt out any leftover thyroid cell and will need to go on a really strict low-iodide diet two weeks prior. And since I'll be radioactive for a week after I won't be able to teach or otherwise be around people and FI will have to stay somewhere else for a few days--feels like I'm in a sci-FI film

Thanks for sharing your experience; it really helps to know that so many folks go through this.

Musikalbunni said:

Aray82 said:

Musikalbunni said:

I got my thyroid removed when I was 25 for the same reason you described. Basically been on synthetic thyroid meds ever since. I've had my dose adjusted over 3 times. Now I'm at a dose that works.

Good to know! I've heard from people that it takes a long time, and even then it can change after a few years. I've heard so many different kinds of side effects, many that could just be related to stress in general, so I'm worried about not recognizing mood and energy level changes as thyroid issues rather than stress. When Meds weren't working, was it pretty clear that it was thyroid-related?

The most common side effect I have had is extreme lethargy. Some people have partial function of their thyroid or it's not producing enough thyroid hormones. But in my case, I have no thyroid, so I depend on medication 100%. When dose was low (we are talking 125mcg) I feel really tired. It's hard to describe how tired I feel because it's just so extreme. 

I am on 150mcg now, and I think I might need a little more. Visiting my Endocrinologist in a month - let's see how that goes. 

As far as moods go, I get cranky when I am sleepy. My skin gets dry and itchy sometimes. I never had that problem before my thyroid was removed, so I attribute dry skin, lethargy, and mood changes on Thyroid meds. 

You might need to go on a low-iodine diet soon after that for a few weeks. I can give you some low-iodine recipes. 

ETD: because I didn't catch that she just got out of surgery. 

Aray82

RebeccaB88 said:

My thyroid just randomly stopped working. I take 2 thyroid meds every day - Synthroid (T3) and Cytomel (T4). I have to have them both or I'm a useless, stupid lump. I don't just have fatigue when I'm off them, I do nothing but sleep. I can't work. I have severe brain fog (like, I once walked directly into a wall because it didn't occur me to walk through a door, and I would ask the same question over and over again, not remembering asking or the answer). My hair falls out in handfuls. I itch all over. So yeah, the meds are really important.

It took about 6 months of adjustments to get me in a good place initially, then we adjusted about once a year for a few years. Now I've been on the same dose for I can't remember how long...7 or 8 years?  Having the extra T4 is essential for me. I can do short periods of time without the T3, but within a few days of not having the T4, I'm borderline bedbound. I just simply can't wake up and function. Make sure your endocrinologist runs a full thyroid panel on you EVERY TIME. Not just your TSH. I had a perfectly normal TSH for years and no one could figure out what was wrong with me (was offered SO many antidepressants), until one doctor ran the full panel, and it was incredibly abnormal, but my TSH was very normal. If they won't do it, leave and find one who will. Thyroid disease is not a cookie cutter thing. It's different for everyone, and each case needs to be evaluated individually. For instance, a lot of doctors consider me over-replaced, but if we go any lower, I am extremely symptomatic. And I'm not over-replaced on paper, but because I'm slightly out of the norm, they assume I'm being treated improperly.

My wedding is exactly six months from now so hopefully it'll get figured out by then. Good to know about looking at more than just the TSH. Every time a doc comes in to explain this stuff to me, he/she asks if I have any questions and I'm still in the process of learning enough to even get to the point where I know what questions to ask. It'd be so much easier if it were a cookie cutter process...with finishing my PhD, starting a new job, looking for a full-time positon all over the country, and oh yeah, planning a wedding, I just wish I didn't have the extra stress of not knowing what's going to happen to my body and not being in control of how/when the meds will start working. Sigh.

Thanks for sharing your experience--it does help me to feel more prepared for a wide range of possibilities.

Aray82

Sugargirl1019 said:

I've been on Synthroid since I was 16! Only recently did I have to increase my dose by a lot (I'm 24) and the doctor said it was because my body has settled down in growing and my metabolic needs had changed and i was basically getting older lol. I have noticed I am more tired and maybe slight weight gain (5-8 pounds maybe?) if my meds are too low. Otherwise it is the easiest thing in the world to deal with. I never ever worry! Just go for blood tests like a good girl and it'll be fine! I get mine drawn every 3-6 months because I have type 1 diabetes also.

Thyroid medicine needs to be taken on an empty stomach, 30 minutes before food. But I take mine at bedtime, and have no problems as far as I know.

Thanks for sharing! Before all this I was terrified of having blood drawn but it's a lot less of a big deal (still scary) now that I'm getting it drawn every 4 hours while I'm in the hospital. At least I know it'll be something I can manage when I get out.

Aray82

beharrington said:

I have my thyroid but it doesn't work.  I go in annually for bloodwork and adjustments.  Now that I'm off BC, I should probably check back sooner because it's obvious they aren't working (ridiculous weight gain and sweating).  I'm going to have them check for Hashimoto's at this visit.  I have narcolepsy (it always cracks me up when they ask if I'm still tired or if the thyroid meds are helping) and it was recently determined that it is, in fact, an autoimmune disease/disorder/whatever the heck they decide to call it this week.

Hah, yeah that was the first thing the obgyn asked when she felt a lump: are you feeling tired? Who isn't tired these days, even without any other issues? FI suggested I stop taking BC even before we knew it could actually interfere with the thyroid hormone dosage. It's been overwhelming to learn about just how many thyroid issues could also be symptoms of other diseases as well. I've never been diagnosed with an autoimmune disease but I have been on meds for anxiety...which apparently is also a thyroid symptom.