Thyroid concerns...

UMichGirl · November 2009

I posted this on GP too, but am hoping I can get some insight here as well.

Some of you may have read my posts in the past about how they're trying to regulate my thyroid levels. I've been going in for bloodwork every month or so, and they're trying to get my levels between 1 and 3 or something like that. When I first got tested I was just above a 5, but since then my levels have been dropping so they've been lowering my dose. I'm now on the lowest dose they can prescribe, and I just got a phone call from the RE's office from my b/w Saturday. She said, "STOP taking your synthroid! We can't have you on it with levels this low!" My TSH came back at 0.005. She said with the numbers dropping over the past couple months and now being SO low that basically they think my thyroid is getting ready to shut down.

?!?!?!?!

Of course when I'm on the phone I don't think to ask how SERIOUS that can be, but with how urgently the nurse was telling me to STOP taking it, I can't help but now be worried! I'm trying to google hyPERthyroidism, because I guess that's what I'd have now (medically induced, of course) but I am so confused....and worried!

Anyone else have levels that low before?! How nervous should I be?

islelily · November 2009

I'm on levoxyl after having a starting TSH of 3.5. With medication I've dropped to between .5 and 1.5. And I am on a low dosage of 69.65 mcg a week (75 6X and 37.5 1x)

I would definitely follow your doctor's orders and stop immediately. Have you felt any differently? With a number of .05, I am sure you would feel something.

Hyperthyroidism is a less common occurrence. My sister had hyper, which is a lot harder to control (had has a lot of opposite symptoms -- cold, rapid weight loss, racing heart). For my sister's case, it was easier for the doctor to "kill off" her thyroid to make her become hypo. She now takes meds for hypo.

Call you doctor back and ask for more details!

fallbride110406 · November 2009

islelily:
Hyperthyroidism is a less common occurrence. My sister had hyper, which is a lot harder to control (had has a lot of opposite symptoms -- cold, rapid weight loss, racing heart). For my sister's case, it was easier for the doctor to "kill off" her thyroid to make her become hypo. She now takes meds for hypo.

This exactly. Sometimes when your thyroid begins to fluctuate and your TSH goes high, treating it can cause it to kinda cease to work at all. My endocrinologist was actually really worried about this with me since when I first went to him, I was all over the place with taking levothyroxine (generic synthroid). My numbers were high, then they were too low, then too high again. My endo did some more testing, tried altering my dose and medication (I'm on Levoxyl now) and eventually got it under control. My aunt had almost the same reaction as me, but then her numbers plunged like yours and she had her thyroid "killed off" and now just takes the synthroid.

I would ask if it would be better for you to see a regular endocrinologist for this since it seems as though you may have a more serious issue with your thyroid than it just being underactive. The endo I go to specializes in thyroid diseases and disorders and is in Bloomfield Hills (on Orchard Lake Rd, north of 15 mile I believe. I saw him throughout my treatment at RMA and Dr. Miller preferred that since I had been seeing him for a year when I started with RMA. I was referred to him and told he's one of the best thyroid specific endo's in this area.

UMichGirl · November 2009

islelily:
I'm on levoxyl after having a starting TSH of 3.5. With medication I've dropped to between .5 and 1.5. And I am on a low dosage of 69.65 mcg a week (75 6X and 37.5 1x)
I would definitely follow your doctor's orders and stop immediately. Have you felt any differently? With a number of .05, I am sure you would feel something.

Hyperthyroidism is a less common occurrence. My sister had hyper, which is a lot harder to control (had has a lot of opposite symptoms -- cold, rapid weight loss, racing heart). For my sister's case, it was easier for the doctor to "kill off" her thyroid to make her become hypo. She now takes meds for hypo.

Call you doctor back and ask for more details!

Honestly I haven't noticed much of a difference at all. They told me I'd notice a difference when I started synthroid...but didn't. Then when my levels got SUPER low, my doctor asked me how I was feeling b/c I should for sure feel something, but nope. I didn't have any symptoms when they told me I needed to start taking the meds either. I'm just so frustrated.

I'm kind of confused though when you say "killed off" her thyroid...Can your thyroid get to a point where it doesn't work at all? I'm just so worried...was I on medication for no reason?! Did it do more harm than good??

islelily · November 2009

UMichGirl:
islelily:
I'm on levoxyl after having a starting TSH of 3.5. With medication I've dropped to between .5 and 1.5. And I am on a low dosage of 69.65 mcg a week (75 6X and 37.5 1x)
I would definitely follow your doctor's orders and stop immediately. Have you felt any differently? With a number of .05, I am sure you would feel something.

Hyperthyroidism is a less common occurrence. My sister had hyper, which is a lot harder to control (had has a lot of opposite symptoms -- cold, rapid weight loss, racing heart). For my sister's case, it was easier for the doctor to "kill off" her thyroid to make her become hypo. She now takes meds for hypo.

Call you doctor back and ask for more details!
Honestly I haven't noticed much of a difference at all. They told me I'd notice a difference when I started synthroid...but didn't. Then when my levels got SUPER low, my doctor asked me how I was feeling b/c I should for sure feel something, but nope. I didn't have any symptoms when they told me I needed to start taking the meds either. I'm just so frustrated.
I'm kind of confused though when you say "killed off" her thyroid...Can your thyroid get to a point where it doesn't work at all? I'm just so worried...was I on medication for no reason?! Did it do more harm than good??

I'm surprised that you didn't notice anything when your number was so low. Is it possible that they gave you the wrong number? Maybe it was .5 rather than .05? Anyway, I had only a few symptoms of hypothyroidism and I didn't really have a "aha" moment until after I got my numbers back from bloodwork. I had always hit a low point of tiredness at around 3 each day. Enough that some days I'd just zone out and stare at the computer just dreaming of napping (not every day was like this, but some). I've always had a lot of hair loss, especially when washing my hair. I thought it had to be normal, but sometimes it was a large amount. I've also had some weight gain since my miscarriage last May. I hadn't changed my diet and even with some exercise thrown in it didn't seem to come off. Those symptoms can all fly under the radar and seem "normal" when its a day to day thing. It was more hind-sight for me.

When my endocrinologist was trying to find the right dosage for me, she took my starting number (1st test was a 5 something, second to confirm was a 3.5) and started me out slowly. I was first on 25mcg of Levoxyl and my number jumped down to 1.8 after 3 months on it. My Endo wanted it lower, so she raised my medication to 75mcg/daily. My number went down again to about .7-1, but I started having side effects -- I felt my heart racing sometimes and I began feeling anxious easily. For example, I'd get an email from my boss on the way into work saying she needed to see me as soon as I got in. During the drive in, my thoughts would wander and I'd start to get anxious and think of all of the reasons why I could be in trouble with my boss at work. Wondering if I had completed an assignment, etc. My heart was racing by the end!

SO, I told my endo about that and she reduced my meds to 75mcg for 6 days. I've felt a lot better since then. Since taking fertility drugs, my levels have gone up a bit (since they mimic pregnancy hormones), so she increased my dosage to half a pill on the 7th day.

A small dose change can really effect your numbers, so its possible to small change that your doc gave you dropped your number quickly.

When I meant "kill off", they basically gave my sister enough medication that convinced her thryoid to stop working completely, as if it was not needed. It is easier for doctors to control how much TSH your body needs rather than trying to compete with an overactive thyroid. Its a much more stable process of once finding the right dosage to keep you healthy, rather than continually changing doses to compete with they thyroid.

I can't answer whether or not you were put on medication for no reason. Thats something you have to decide on your own. I was a little hesitant to go on medication as well, since hey, I was in the normal range for a healthy person. It was a little high, but still in the range. However, my RE and endo both believed that it is a fine level for my body normally, but it was too high to support a pregnancy. My pregnant body needs a lower number. Does that make sense? As well, the endo believes that though I was on the border of healthy/too high now, if left untreated, I would've been visiting her anyway a few years from now after it got worse.

Sorry for such a long response! I would call your endo again and ask why do they think your body had such a quick reaction to it and why possibly you didn't feel any big symptoms? I'd also ask if they think there are other steps you can take. Good luck!

UMichGirl · November 2009

Wow, thank you very much for your response!

Thyroid concerns...

Re: Thyroid concerns...

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