Anyone ever had a thyroid with zero function?

[ClarabelleCowFan]

I have had hypothyroidism for close to a decade and been on varying doses of Synthroid or Levoxyl ever since I was diagnosed. I have been on a pretty high dose of .175 for at least the past 5 years and this past summer my endocrinologist noticed my levels were a little off and lowered me to .150.

Just 3 months after starting the new lower dosage my thyroid shut down completely. They symptoms are like going back to the days before I was diagnosed all over again only more extreme - hair falling out, cold intolerance, constant utter exhaustion, headaches, etc... The worst part is the heart issue - it seems to be beating out of my chest at times and my Dr told me I could go into atrial fib quite easily.

My new endocrinologist here stopped my Levoxyl completely for a week then restarted me at a much lower dose of .100 but so far I am still at zero function.

Has anyone else had this happen? How long did it take for things to get back to normal?

 

[The Mystery Machine]

My brother was diagnosed with Graves Disease last yr. He was really really bad. He had to take some pill to fully destroy his thyroid and now he has been trying to get back on track this whole yr.

Did the doctor find out why your thyroid shut down?

It took several months before my brother got back to feeling normal. His eyes still look bulgy to me though. I am not sure if he is "perfect" with his meds yet.

 

[LuvOrlando]

I have no advice ClarabellCowFan, I just hope you'll be ok

 

[LuvOrlando]

Sorry,double post

 

[Christine]

How do you know that your thyroid has zero function. If you had a blood test and your TSH was sky high, then your thyroid would have zero function. From what you have written, it sounds opposite. Most people who have zero thyroid function are not having a pounding heart and in danger of a-fib. It is people who are taking too much or are hyperthyroid that have these issues.

Can you let us know if you've had a blood test done and what it said?

 

[BCDisneyFanatic]

I have had hypothyroidism for close to a decade and been on varying doses of Synthroid or Levoxyl ever since I was diagnosed. I have been on a pretty high dose of .175 for at least the past 5 years and this past summer my endocrinologist noticed my levels were a little off and lowered me to .150.

Just 3 months after starting the new lower dosage my thyroid shut down completely. They symptoms are like going back to the days before I was diagnosed all over again only more extreme - hair falling out, cold intolerance, constant utter exhaustion, headaches, etc... The worst part is the heart issue - it seems to be beating out of my chest at times and my Dr told me I could go into atrial fib quite easily.

My new endocrinologist here stopped my Levoxyl completely for a week then restarted me at a much lower dose of .100 but so far I am still at zero function.

Has anyone else had this happen? How long did it take for things to get back to normal?

Add me as another person confused by your post.

If you are taking levoxyl, then it shouldn't matter if you have 'zero function'. Taking the thyroid meds replaces the need for a functioning thyroid.

If the doctor is reducing your meds, that suggests to me that you were taking too much thyroid meds (typically indicated by a very low TSH level). While your other symptoms sound pretty normal for hypo, my pulse rate always drops when my levels are off (down to the low 50s/mid 40s). I only get those rapid episodes when I'm hyperthyroid.

 

[golfgal]

I am also confused. If you have zero function the doctor would want to RAISE your meds, not lower. Something is being lost in the translation here. What were your TSH numbers when the dr started changing your dose?

 

[LuvOrlando]

I think the Dr is keeping the dose low hoping her own Thyroid will 'kick start' once her body registers the problem.

 

[LuvOrlando]

Sorry, my Ipad keeps doubling posts

 

[ClarabelleCowFan]

My regular doctor had ordered routine bloodwork a couple of weeks ago and his nurse called me in a panic the day before we left for WDW telling me that I had to go see an Endocrinologist immediately - that it was an emergency because my thyroid was "zero functioning" (the nurse's words). After several phone calls back and forth with the nurse relaying my questions back and forth to my regular doctor (I didn't see the need for a panic because I had always been told that eventually my thyroid WOULD shut down and the meds would take over completely) and the nurse calling and speaking directly with an endocrinologist, I was told that it was indeed an urgent situation since I was about to leave town for 10 days and I traveled 100 miles round trip to the endo.

According to my bloodwork my thyroid had completely stopped working. The endo told me that I have apparently been on too high of a dose of Levoxyl for too long and it caused my thyroid to shut down without warning. He doesn't know why and doesn't know if it will be able to start back up but he stopped my meds completely for several days then started me back on a much lower dose.

Apparently when my thyroid shut down it caused the pituitary gland to react negatively - either overact or underact - and that is causing more problems.

When I went for my followup with the endo yesterday I have been on the lower dose of the meds for only about 10-11 days and the hypo symptoms are still pretty severe. He did more bloodwork yesterday and ordered more in several intervals over the next several weeks to track the thyroid function.

The endocrinologist kept warning me about the dangers of going into atrial fib and told me that was the cause for concern and the sense of urgency in getting this under control.

 

[ClarabelleCowFan]

I am also confused. If you have zero function the doctor would want to RAISE your meds, not lower. Something is being lost in the translation here. What were your TSH numbers when the dr started changing your dose?

TSH was 0.0 from what my PCP's nurse told me.

 

[golfgal]

TSH was 0.0 from what my PCP's nurse told me.

Ok, now I am even MORE confused. A TSH of 0.0 would be just shy of the normal range of .3 to 3. When my thyroid was not working properly, HYPOthyroid, meaning low function, my TSH was 95. If you are at 0, you are then technically HYPERthyroid-meaning your thyroid is working TOO much. Something is getting lost in the translation or your PCP doesn't understand the numbers.

 

[ClarabelleCowFan]

Ok, now I am even MORE confused. A TSH of 0.0 would be just shy of the normal range of .3 to 3. When my thyroid was not working properly, HYPOthyroid, meaning low function, my TSH was 95. If you are at 0, you are then technically HYPERthyroid-meaning your thyroid is working TOO much. Something is getting lost in the translation or your PCP doesn't understand the numbers.

That was the number from the PCP's nurse. I didn't get to see the bloodwork (I usually ask to look) since I went directly to the Endocrinologist and he didn't show me or mention exact numbers.

Seems the problem is a combination of the thyroid shutting down and the pituitary gland acting up as a result of it. My body is in extreme hypo mode right now though symptom wise. I'm tired of it. I like the Endocrinologist - he seems very thorough and is ordering several other tests including ones related to bone loss (I've shrunk 2" since high school).

 

[Christine]

Okay, now I get it. Your thyroid has not stopped functioning or has not been ruined by the medicine.

You are experiencing total TSH suppression from being over medicated. As a thyroid cancer patient, our goal is total TSH suppression and most of us strive to get our TSH to 0.0.

Here's what happens:

When your thyroid works normally, it produces thyroid hormones (TSH is NOT a thyroid hormone it is a pituitary hormone). If your thyroid starts to fail, your pituitary gland goes on alert and produces TSH (Thyroid Stimulating Hormone). So the more your thyroid doesn't function, the higher your TSH goes because your pituitary gland is trying to furiously jump start this sluggish thyroid gland. The more hypo you are, the higher the TSH goes. Like in golfgal's case, hers was pretty dead. I have no thyroid so if I don't take meds, mine will go to about 145 before I feel like I'm going to drop dead.

In hyperthyroidism, the opposite happens. The pituitary gland senses too much thyroid hormone in the blood stream and attempts to stop it. It slows down production of TSH in an attempt to slow down thyroid output. This usually works in someone who is not on meds. Once you start taking meds, the slow down of TSH by the pituitary is sort of useless but it keeps trying adn trying until you eventually end up with a 0.00 TSH level. Not comfortable and dangerous in some cases.

I'm not sure why the nurse freaked out and didn't explain it properly. But I've had my share of nurses who were misinformed. But you'd think one that worked at an endo's office would be a tad more eloquent about it.

At any rate, your thyroid has not stopped functioning. The meds have temporarily suppressed it. As the meds get out of your body, which can take 6-8 weeks to stabilize, your TSH will slowly rise and it will begin to produce what little thyroid hormone it was already producing.

As to your symptoms, you are not hypo. I don't know why you are experiencing hypo symptoms except for the fact that you've been so darn hyper that you probably have no idea what "normal" feels like. Many people, with no thyroid problems, have cold intolerance. Heck, I have both cold and heat intolerance. Go figure (and I can be a bit on the hyper side). I think because you've been so hyper, the symptoms you are now experiencing are an attempt at your body trying to slow down. Changing thyroid meds is quite the roller coaster ride. It may take you several months to stabilize and feel normal.

 

[Christine]

Seems the problem is a combination of the thyroid shutting down and the pituitary gland acting up as a result of it. My body is in extreme hypo mode right now though symptom wise. I'm tired of it. I like the Endocrinologist - he seems very thorough and is ordering several other tests including ones related to bone loss (I've shrunk 2" since high school).

Nothing weird is happening here. Your pituitary is not "acting up". It is doing what it is supposed to be when you are overmedicated. And there is no way that you are in extreme hypo mode. It's impossible. But I don't doubt that you are feeling horrible.

And yes, being too hyper for too long, can cause osteoporosis.

 

[Wishing on a star]

My new endo (the only one in town, who I am not super happy with) lowered my meds slightly from what my prev. doctor had been prescribing, because he said that my TSH levels were too close to .000.

And, I too, had heard that the levels considered 'normal' had been really reduced over the past few years.

Perhaps there is emerging information that suggest a complete 0.00 level can have negative effects, either on the thyroid, and perhaps on other glands.

I am thinking that this is very possible.

Perhaps a small level of TSH is needed/beneficial.

Anyhow, IMHO, a person should have a full thyroid panel, not just the TSH, in order to see what is actually going on.

As far as feeling over or under medicated...
I think that the thyroid meds are probably not completely utilized by the body the way natural thyroid hormone's are. It is common knowledge that many, many, people who take they usual pharmaceutical thyroid meds continue to 'feel' undermedicated.

But, most regular MD's do not even consider alternatives, such as Armour.

 

[ClarabelleCowFan]

Okay, now I get it. Your thyroid has not stopped functioning or has not been ruined by the medicine.

You are experiencing total TSH suppression from being over medicated. As a thyroid cancer patient, our goal is total TSH suppression and most of us strive to get our TSH to 0.0.

Here's what happens:

When your thyroid works normally, it produces thyroid hormones (TSH is NOT a thyroid hormone it is a pituitary hormone). If your thyroid starts to fail, your pituitary gland goes on alert and produces TSH (Thyroid Stimulating Hormone). So the more your thyroid doesn't function, the higher your TSH goes because your pituitary gland is trying to furiously jump start this sluggish thyroid gland. The more hypo you are, the higher the TSH goes. Like in golfgal's case, hers was pretty dead. I have no thyroid so if I don't take meds, mine will go to about 145 before I feel like I'm going to drop dead.

In hyperthyroidism, the opposite happens. The pituitary gland senses too much thyroid hormone in the blood stream and attempts to stop it. It slows down production of TSH in an attempt to slow down thyroid output. This usually works in someone who is not on meds. Once you start taking meds, the slow down of TSH by the pituitary is sort of useless but it keeps trying adn trying until you eventually end up with a 0.00 TSH level. Not comfortable and dangerous in some cases.

I'm not sure why the nurse freaked out and didn't explain it properly. But I've had my share of nurses who were misinformed. But you'd think one that worked at an endo's office would be a tad more eloquent about it.

At any rate, your thyroid has not stopped functioning. The meds have temporarily suppressed it. As the meds get out of your body, which can take 6-8 weeks to stabilize, your TSH will slowly rise and it will begin to produce what little thyroid hormone it was already producing.

As to your symptoms, you are not hypo. I don't know why you are experiencing hypo symptoms except for the fact that you've been so darn hyper that you probably have no idea what "normal" feels like. Many people, with no thyroid problems, have cold intolerance. Heck, I have both cold and heat intolerance. Go figure (and I can be a bit on the hyper side). I think because you've been so hyper, the symptoms you are now experiencing are an attempt at your body trying to slow down. Changing thyroid meds is quite the roller coaster ride. It may take you several months to stabilize and feel normal.

The nurse that freaked out was in my PCP's office. Believe me, I was not happy about having to drop everything and make this 100 mile round trip trek the night before our huge WDW trip with all 5 kids for what I couldn't understand was as urgent as she was making it out to be.

As far as not feeling normal in so long - I totally agree. Since we moved this summer I have been sick as a dog. Not sure how much is related to this issue or not but I am ready to just feel human again. I have friends who have been through SO much more than this little bit so I hate to complain.

Nothing weird is happening here. Your pituitary is not "acting up". It is doing what it is supposed to be when you are overmedicated. And there is no way that you are in extreme hypo mode. It's impossible. But I don't doubt that you are feeling horrible.

And yes, being too hyper for too long, can cause osteoporosis.

I have never been told I was hyper, always hypo. Osteoporosis does run in my family though. I had a Dexa scan 2 years ago which showed the beginning stages of osteopenia so this doctor has ordered another scan to check for any changes.

Thanks for the information. I really do appreciate it! Could you call the nurse at my PCP's office and explain things to her please?

 

[wvdisluv2]

Hoping the doctors can help get your thyroid stable soon! I was diagnosed with Graves disease in 1992 and had all but 2% of my thyroid removed in 1994. I quit smoking in 2009 and have had problems ever since (weight gain, dry skin/hair, fatigue ect.~hypo symptoms) I don't think the pcp's are doing their part in being thorough about blood tests with the new TSH measurements, however my endocronologist isn't listening to me either. My synthroid has been at .100 mcg since 1994, and now has been increased to .125 mcg and I'm STILL feeling hypo Thyroid problems are SO frustrating, don't give up!

 

[ClarabelleCowFan]

Hoping the doctors can help get your thyroid stable soon! I was diagnosed with Graves disease in 1992 and had all but 2% of my thyroid removed in 1994. I quit smoking in 2009 and have had problems ever since (weight gain, dry skin/hair, fatigue ect.~hypo symptoms) I don't think the pcp's are doing their part in being thorough about blood tests with the new TSH measurements, however my endocronologist isn't listening to me either. My synthroid has been at .100 mcg since 1994, and now has been increased to .125 mcg and I'm STILL feeling hypo Thyroid problems are SO frustrating, don't give up!

I had an Endocrinologist tell me years ago to NEVER listen to anyone BUT an Endo about thyroid levels or let anyone BUT an Endo order bloodwork regarding thyroid levels. There is even quite a big argument among Endocrinologists about exactly what the "normal" levels should be. The problem for me with being a military spouse is that we move every couple of years and it is hard to keep transferring medical records around if you don't go to military doctors (I choose to go off post for all of my medical care). I had been on the waiting list to get in with a great Endo that specialized in Osteoporosis at Johns Hopkins and finally got an appointment with her a few months before we moved. She had identified that I was being overmedicated and lowered my dose but at that point I guess it was too late since these issues came to light shortly after we moved.

If you don't like your Doctor, find a new one that will listen to you. Good luck to you! Hope you are feeling better soon!

 

[Christine]

I have never been told I was hyper, always hypo. Thanks for the information. I really do appreciate it! Could you call the nurse at my PCP's office and explain things to her please?

I can sort of see why they told you this. You have the condition "hypothyroidsim", however, you've been overmedicated, your TSH is undetectable, so you are currently very, very HYPER. But this HYPER is medication induced and is not a condition you have.

As for the PCPs office, it is a rare PCP that REALLY, REALLY understands the thyroid.

An endocrinologist would probably not get as freaked out. Believe me, tons of thyroid cancer patients are routinely put at a TSH of 0 and no one is too freaked out by it. I'm not advocating it for you, just letting you know that it's not dire. It is a big deal; however, for your heart to be pounding.

Back in 2008, I inexplicably got overmedicated (without my dose changing--maybe it was just some fluke with the batch of meds I was taking). I was having heart palps all day and all night. Went to the cardiologist and got it confirmed but told they were harmless. My doctor didn't think my TSH was low enough to cause it but it had dipped down to 0.09. I'm more comfy at around 0.3. Very small changes in TSH make a huge difference in things.