Aa
interesting read. what caused his setback?
this is an interesting story, i met a lady in florida by luck who had the same exact thing happen to him as me. he even went to the mayo. Curious to know what you guys think of what happened to him:
I think maybe his liver became fatty as he aged causing him to go more hypo?
My wife , spoke to me of your discussion the other evening concerning the Mayo Clinic and unsolved endocrine issues. As she described your experience, it was hard to believe the number of similarities between our cases. Aside from the obvious desire to discuss our unique and unresolved medical histories, from what Dana was saying, you sound like an extremely warm and welcoming individual.
I’ll give you the rundown of what I experienced. As we discuss our individual experiences, hopefully we can better understand the symptoms and what solutions may be available.
For me, it probably started 30 some years ago. I was diagnosed with thyroid cancer when I was 18, and it was removed. I was fortunate in that my primary care physician caught it very early during a relatively routine checkup. As a consequence, I wasn’t forced to go through any radiation or chemotherapy treatments. I have been on Synthroid ever since, but there have been no signs of recurrence. For the next 25 years, I was quite healthy.
The first thing unusual that occurred, started around eight years ago. I found that I would go through periods of time where my body was not doing a good job at maintaining my body temperature. I would go through several days to a week where my body temperature would regularly fall below 96° and sometimes below 95°. The cause was never diagnosed.
Three and a half years ago, I was talking to my primary care physician (no longer my physician) in Celebration and he chose to run a test on my testosterone. It happened to be quite low, so he started me on Androgel. As I discovered later, he did not run through the diagnostic steps to identify whether the cause was my pituitary or not. Unfortunately, after one starts taking Androgel or similar products, the tests that are used to separate out primary and secondary causes don’t work. But, for a few months things seemed to be going fairly well.
Then, three years ago in January, I had a new type of episode that lasted a few days and sent me to the emergency room. Something just switched in my body and caused my blood pressure to spike. I was shedding fluid like it was going out of style. Over three days, I lost 8 pounds of fluid in all. I started sweating (particularly at night), and I developed a horrible migraine. Then, as fast as it started, it stopped. That was my first episode. These episodes continued every week to two weeks. They were quite debilitating.
Over the summer, I ended up heading to Jacksonville and the Mayo Clinic on the advice of a new primary care physician here. I worked with them over the summer, but it seemed particularly hard to nail down, because my symptoms were episodic. I had MRI’s, saw endocrinologists and neurologists, but other than discovering that I have an empty sella, they found nothing concrete. After that first episode, my blood pressure varied, but not as much. That was a relief. I really found it hard to work though. I was having terrible migraines, my eyes hurt, weight shifts, and the night sweats. I remember one night, I woke up and my pillow case was soaked through. It was as if I had just pulled it out of a bucket of water.
Then around October of that year, knock on wood, I had my last episode. I still have occasional migraines, but not even close to what I was having that year. I’ve noticed I am prone to tendonitis now, but that could be just age. That is probably my biggest lasting problem right now, because I work at the computer all day and by the evening it can be difficult to type. The other particularly annoying problem is tinnitus. That could also be an age thing, hearing issues do run in my family.
I still head up to the Mayo yearly (or a little more often), but fortunately, the more serious problems of two years ago have not returned. It drove me crazy not being able to figure out what was going on. Dana told me they even took our your gallbladder in a search for the cause. I’d love to hear your story.
I think maybe his liver became fatty as he aged causing him to go more hypo?
My wife , spoke to me of your discussion the other evening concerning the Mayo Clinic and unsolved endocrine issues. As she described your experience, it was hard to believe the number of similarities between our cases. Aside from the obvious desire to discuss our unique and unresolved medical histories, from what Dana was saying, you sound like an extremely warm and welcoming individual.
I’ll give you the rundown of what I experienced. As we discuss our individual experiences, hopefully we can better understand the symptoms and what solutions may be available.
For me, it probably started 30 some years ago. I was diagnosed with thyroid cancer when I was 18, and it was removed. I was fortunate in that my primary care physician caught it very early during a relatively routine checkup. As a consequence, I wasn’t forced to go through any radiation or chemotherapy treatments. I have been on Synthroid ever since, but there have been no signs of recurrence. For the next 25 years, I was quite healthy.
The first thing unusual that occurred, started around eight years ago. I found that I would go through periods of time where my body was not doing a good job at maintaining my body temperature. I would go through several days to a week where my body temperature would regularly fall below 96° and sometimes below 95°. The cause was never diagnosed.
Three and a half years ago, I was talking to my primary care physician (no longer my physician) in Celebration and he chose to run a test on my testosterone. It happened to be quite low, so he started me on Androgel. As I discovered later, he did not run through the diagnostic steps to identify whether the cause was my pituitary or not. Unfortunately, after one starts taking Androgel or similar products, the tests that are used to separate out primary and secondary causes don’t work. But, for a few months things seemed to be going fairly well.
Then, three years ago in January, I had a new type of episode that lasted a few days and sent me to the emergency room. Something just switched in my body and caused my blood pressure to spike. I was shedding fluid like it was going out of style. Over three days, I lost 8 pounds of fluid in all. I started sweating (particularly at night), and I developed a horrible migraine. Then, as fast as it started, it stopped. That was my first episode. These episodes continued every week to two weeks. They were quite debilitating.
Over the summer, I ended up heading to Jacksonville and the Mayo Clinic on the advice of a new primary care physician here. I worked with them over the summer, but it seemed particularly hard to nail down, because my symptoms were episodic. I had MRI’s, saw endocrinologists and neurologists, but other than discovering that I have an empty sella, they found nothing concrete. After that first episode, my blood pressure varied, but not as much. That was a relief. I really found it hard to work though. I was having terrible migraines, my eyes hurt, weight shifts, and the night sweats. I remember one night, I woke up and my pillow case was soaked through. It was as if I had just pulled it out of a bucket of water.
Then around October of that year, knock on wood, I had my last episode. I still have occasional migraines, but not even close to what I was having that year. I’ve noticed I am prone to tendonitis now, but that could be just age. That is probably my biggest lasting problem right now, because I work at the computer all day and by the evening it can be difficult to type. The other particularly annoying problem is tinnitus. That could also be an age thing, hearing issues do run in my family.
I still head up to the Mayo yearly (or a little more often), but fortunately, the more serious problems of two years ago have not returned. It drove me crazy not being able to figure out what was going on. Dana told me they even took our your gallbladder in a search for the cause. I’d love to hear your story.
by the way, I hate this new format on here. Still love the people, but now i have a toxic waste symbol next to my face and everything is double spaced when you type.
I seem to feel worse on t4 - more t4 = more wonkyness. You know synthroid is the #1 prescribed drug in the country again for 2015? That means there are a hell of a lot of people with this disease and they still cant come up with a better medication solution then the Cr@p they are feeding us?
I seem to feel worse on t4 - more t4 = more wonkyness. You know synthroid is the #1 prescribed drug in the country again for 2015? That means there are a hell of a lot of people with this disease and they still cant come up with a better medication solution then the Cr@p they are feeding us?
COMMUNITY LEADER
The more NT you add, the higher your FT3 will go and your FT4 will stay low.
In India, they treat only with T4 med, as they have neither desiccated nor synthetic T3 meds...
In India, they treat only with T4 med, as they have neither desiccated nor synthetic T3 meds...
T4 is the devil. wondering if i need to add in another 16.25 ( 1/4 grain) to take this a step further.....
COMMUNITY LEADER
Your FT4 is still way too low... Have you considered decreasing you NT and adding a bit of T4?
I just had quite a conversation with my ENT regarding ear ringing and he says there's nothing to be done about it...typically, once it starts, it's there to stay. Some people can wear hearing aids that "block" the ringing. You might get an appointment with an ENT of your own and see if you get the same answer.
Dizziness can come from various issues ranging from low blood pressure to ear problems. Again, an ENT might help out, otherwise make sure your blood pressure is good and your FT3 is not too high...
I just had quite a conversation with my ENT regarding ear ringing and he says there's nothing to be done about it...typically, once it starts, it's there to stay. Some people can wear hearing aids that "block" the ringing. You might get an appointment with an ENT of your own and see if you get the same answer.
Dizziness can come from various issues ranging from low blood pressure to ear problems. Again, an ENT might help out, otherwise make sure your blood pressure is good and your FT3 is not too high...
well i may be going for much longer. My labs are now perfect. still feel a little whacky but nothing like before.
newest labs:
TSH 3.0 ( down from 102)
ft4 .8 ( .8 to 1.8)
ft3 3.2 ( 2.3 to 3.6)
can i get an "AMEN" ?
this is on 2 1/4 naturethroid split 1 and 1/4 / 1 grain after lunch
still have the ear ringing and slight dizziness / anxiety but getting better.
me and lazy moose may ride off to the sunset...
newest labs:
TSH 3.0 ( down from 102)
ft4 .8 ( .8 to 1.8)
ft3 3.2 ( 2.3 to 3.6)
can i get an "AMEN" ?
this is on 2 1/4 naturethroid split 1 and 1/4 / 1 grain after lunch
still have the ear ringing and slight dizziness / anxiety but getting better.
me and lazy moose may ride off to the sunset...
COMMUNITY LEADER
How odd is that? My comments showed up, when I posted this last comment. Never know what's going to happen, here...
COMMUNITY LEADER
Hmm... I'm not sure what happened... I commented on this thread about 4 hours ago and my comments didn't show up; that's been happening more and more lately. I'm kind of on the run, right now, but I'll try to recreate my comments later. In the meantime, see what you can do about getting those labs.
COMMUNITY LEADER
No, it's not true that going from bad to worse happens more with someone "with" a thyroid than without - those of us whose thyroid has "died" from Hashimoto's are equivalent to someone without a thyroid, so we see it all the time. I'd say it's pretty equal - people go merrily along for years, then suddenly, something changes (maybe even the water... lol) and everything goes haywire and what was good, is no longer.
It "could" have to do with other chemical contact, hormones, diet. You'd have to be able to keep track of everything you came in contact with, all your hormone levels and everything you ate in order to be able to tell for sure.
Just think about the gut, for instance... The gut is another whole organ and it plays a much bigger role the whole scheme of things than we'd ever think. If it's not healthy, the rest of our body isn't very healthy.
Then you have the rest of the endocrine system... if one hormone or set of, is off, it can throw off everything else. Certain chemicals, even common household chemicals, can upset the endocrine system; and what one wasn't sensitive to last year or last week, they may become sensitive to this year or this week.
Yes, people come and go here - just like you. LOL
It "could" have to do with other chemical contact, hormones, diet. You'd have to be able to keep track of everything you came in contact with, all your hormone levels and everything you ate in order to be able to tell for sure.
Just think about the gut, for instance... The gut is another whole organ and it plays a much bigger role the whole scheme of things than we'd ever think. If it's not healthy, the rest of our body isn't very healthy.
Then you have the rest of the endocrine system... if one hormone or set of, is off, it can throw off everything else. Certain chemicals, even common household chemicals, can upset the endocrine system; and what one wasn't sensitive to last year or last week, they may become sensitive to this year or this week.
Yes, people come and go here - just like you. LOL
must be something in the water.. LOL
i need to dig in and see what his labs are. just curious what makes someone go from bad to worse - but usually this happens with someone WITH a thyroid that degenerates. Not with someone who doesn't have a thyroid.
People come and go on here??
i need to dig in and see what his labs are. just curious what makes someone go from bad to worse - but usually this happens with someone WITH a thyroid that degenerates. Not with someone who doesn't have a thyroid.
People come and go on here??
COMMUNITY LEADER
Too much testosterone can cause migraines and sweats, etc...
We don't even know how old he is, so you can't blame stuff on "old age"... I have a sister who keeps blaming everything on getting old - it's not like we get to a certain age and everything automatically, stops working.
We constantly have people coming and going... for some reason, we've had a lot of people, recently from India.
We don't even know how old he is, so you can't blame stuff on "old age"... I have a sister who keeps blaming everything on getting old - it's not like we get to a certain age and everything automatically, stops working.
We constantly have people coming and going... for some reason, we've had a lot of people, recently from India.
Man, i havent been here in so long barb, lots of new faces on here. from INDIA? wow...
sorry i was posting from my phone. I went down to the concierge to try to get car service home and she suggested a shuttle to the airport. I told her i didn't trust those shared shuttles because one of them made me miss my flight from DFW to the mayo clinic in 2010 which made me miss a bunch of appointments. Next thing you know this lady is telling me about her husband who pretty much has all the same things going on as me including the ear ringing.
he takes androgel but my feeing is that they found the low testosterone as a result of testing to figure out what was wrong with him. There is no way that low testosterone did this to him.
I inject testosterone every sunday, If i miss my dose i get a little fatigued, but it doesn't turn my life upside down.
Im just trying to figure out from a personal perspective what happened to him from his TT and 8 years of sailing to all of a sudden him having the same symptoms as me. Im currently trying to find him what his levels were when he had the setback. I wonder if something just made him HYPO or interferred with his converting. LIKE OLD AGE!
he takes androgel but my feeing is that they found the low testosterone as a result of testing to figure out what was wrong with him. There is no way that low testosterone did this to him.
I inject testosterone every sunday, If i miss my dose i get a little fatigued, but it doesn't turn my life upside down.
Im just trying to figure out from a personal perspective what happened to him from his TT and 8 years of sailing to all of a sudden him having the same symptoms as me. Im currently trying to find him what his levels were when he had the setback. I wonder if something just made him HYPO or interferred with his converting. LIKE OLD AGE!
COMMUNITY LEADER
Is it really a lady? It sounds like a guy. It's pretty much impossible for us to know what happened to the person... We don't know how old they are, what other conditions they have, what the thyroid labs have looked like over the years, etc. Are there other autoimmune conditions? Is the person still on the Androgel?
I'm not sure how you concluded fatty liver, but I doubt it, as that would be relatively easily diagnosed and it wouldn't just "disappear" and it sounds as though the person's issues have pretty much resolved.
I'm not sure how you concluded fatty liver, but I doubt it, as that would be relatively easily diagnosed and it wouldn't just "disappear" and it sounds as though the person's issues have pretty much resolved.
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