Gave the dog and stinky shots. Twit will have to wait for his as the first time I gave stinky his shot I only had it in the first layer of skin and it all went out on his coat. Oopppss. At least I think all of it went out-it could be that he got 1 and 1/2 vaccines. Does that equal 1 and 1/2 years? Anyways I will take them all in for rabies and likely get twit's 7 in 1 then.
Still busy bugging the MDs. Somebody has to give them hell. Perhaps by pestering them a bit, they will stop and consider the style of thinking they have fallen into. We all need wake up calls now and then.
Saturday, October 29, 2005
TSH from 7.8 to 1
October: noticed feeling crappy taking 50 ug AM and 25 ug PM. Got really irritable and depressed. Upped amount to 75 ug in the AM and am doing okay. noticed afternoon ickies a bit but ibuprofin and lots of h2o helped. I am feeling a little sluggish at times. Wondering if estrogen spikes during PMS and ovulation trigger changes in TBG and thus less bioavailable T4. How fast does TBG respond to changes? Also cut florinef dose to 50 ug during estrogen spikes as heels hurt a little-possible water retention? The dosage cut worked but then had to go back up to 100ug as estrogen dropped-got all dizzy and salt cravings started. Also noticed T4 reset start of menses-started two weeks early.
Am back to going to sleep early-around 9-10 however I feel better overall. No more afternoon fatigue or narcoleptic like episodes. Would like to up the dose again as I want to get back to where I was back at the start. Will wait for dr though. My brain is so quiet and calm! Vision is much better-like HD TV. All the black spots are gone. Also noticed yellow-sappy color on skin is going away. I am a plain old white girl again.
11/05
Took 50 ug synthroid and 150 ug florinef on accident on Monday. I felt horrible till I realized what I did and took another 50 ug synthroid-then I felt fine. Next day lymph nodes on left side of head swelled-including the odd one in front of my ear. The next day the left side of my body was weak and a bit floppy. That lasted about an hour then I got very flushed and ran a fever of about 100 then I felt okay. I went to the dr the next day and she told me that it was TMJ not an infection. I need a new dr.
Upped my dose to 100 ug today. I will get the TSH drawn in the morning and hopefully it won't be too off from the early increase. i just was feeling horrible. very weak and tired, depressed.
Am back to going to sleep early-around 9-10 however I feel better overall. No more afternoon fatigue or narcoleptic like episodes. Would like to up the dose again as I want to get back to where I was back at the start. Will wait for dr though. My brain is so quiet and calm! Vision is much better-like HD TV. All the black spots are gone. Also noticed yellow-sappy color on skin is going away. I am a plain old white girl again.
11/05
Took 50 ug synthroid and 150 ug florinef on accident on Monday. I felt horrible till I realized what I did and took another 50 ug synthroid-then I felt fine. Next day lymph nodes on left side of head swelled-including the odd one in front of my ear. The next day the left side of my body was weak and a bit floppy. That lasted about an hour then I got very flushed and ran a fever of about 100 then I felt okay. I went to the dr the next day and she told me that it was TMJ not an infection. I need a new dr.
Upped my dose to 100 ug today. I will get the TSH drawn in the morning and hopefully it won't be too off from the early increase. i just was feeling horrible. very weak and tired, depressed.
Sunday, October 23, 2005
TSH 200 to 7.8: part six
One of the first things I noticed now that I was actually stably medicated was that I would get the afternoon ickies. This was happening before but the presumed hypoaldosteronism was by far the worse of the problems. Every afternoon I would start to get a scratchy throat, get foggy headed, have abdominal pain around my liver and stomach, and have what I later determined wre called athralgias-arthritus like aches in my hands, legs and feet. Don't get me wrong. This sucked but it was nothing like what I went through before. This went on for two weeks getting worse everyday. At first if I went running it would make me feel much better but by the end of the two weeks I felt like shit. I went back to the evil internet where I posted on a message board where a doc suggested adding a T3 dose in the PM. I didn't have any of that so instead I added a T4 dose. Magic! Taking 25 ug in the AM and 25 ug in the PM when I noticed the afternoon ickies starting made me feel much better.
This really does challange the idea that the T4 half life is seven days especially in a very hypothyroid patient. It seems that my body was eating up the AM dose and that left my poor crappy thyroid to pick up the slack in the PM. In the severely hypo patient the type 2 deiodinase in the brain and skeletal muscle is upregulated, whereas the type1 in the liver and kidneys is downregulated. The type 3 deiodinase which degrades the T4 is also downregulated. So likely in my case the brain and skeletal muscle ate all the T4 quickly leaving the rest of my body without any. Another very relevent fact is that the expression levels of these enzymes are regulated by T3, not T4, so it doesn't make biochemical or enzymatic sense to give a pateint T4 only. A combo T3/T4 treatment is a better idea-but try and convince some of the endos of that idea.
So after two weeks I started exhibiting many of the "normal" hypothyroid symptoms. I was constipated and felt really groggy and tired. It was all very lethargic though, nothing like the previous shaky weakness from the presumed hypoaldosteronism. I thought at first maybe I had messed up my circadian cycles taking the two doses so I started taking 50 ug in the AM only. I realized I was also in the PMS stage of my menstruel cycle and there are things I have yet to learn about thyroid binding globule and estrogen levels that may have also explained it. I felt better but started noticing the afternoon ickies returning so I took another 25 ug dose in the PM which made them go away.
So now I am up to 50 ug in the AM and 25 ug in the PM. My endo was very good about the dosage increase. Honestly he took it better than I expected. I tripled my dose between visits and he seems only a bit concerned. I feel like I am knowledgable enough about where my final dose will be and the debate about raisning the dose during treatment that I am comfortable changing things but he doesn't really know that.
The oddest thing is that every week sort of reminds me of some stretch of time in the past. I guess the exogenous T4 suppresses my TSH level. As the TSH is supressed, any T4/T3 production capability I might still have left is supressed. At this time my exogenous T4 is not enough to totally replace the amount my thyroid would make so I end up with a net deficiet of T4/T3. The last few weeks have been a little sluggish and a lot of muscle/ligament stiffness and pain. I thought it was ovulation but it has kept going. I would up my dose on my own but I did tell him I wouldn't do that again at least till we meet next month . poor endo..... So at any rate I am stepping through history physiology wise-back in 99 I felt like this for awhile, back in 2001 I remember this symptom. It is kinda funny.
I think these things will be ironed out in time however I am still a touch concerned by the origin of the presumed hypoaldosteronism. If it isn't adreanl it seems the other not so fun option is hyporenninc hypoaldosteronism due to kidney damage. My endo says that if this were the case my creatine levels would be messed up however my aldosterone levels also looked "okay" during some of the tests ran. 99% chance it is just an adaptation the the extreme hypoaldosteronism but for myself I like to understand the possibility that rarer more severe things may be there. My office mate says she would worry terribly if it was her but for me I would rather be aware of the possibilities and probibilities than hide my head in the ground.
We tested my TSH level in house back at the start of this mess. It came in right about 200 with a %CV of about 10%. The other day it was down to 7.8. Yippie, I am in the single digits!!
Things to be learned:
1) Do Not assume drs are always right. Question them and make suggestions. If thier egos can't take that you need to find a better dr.
2) No realm of medicine or science is fully explored. A textbook may give you answers 99% of the time but you still may have to thinkon your own and recognize a case that is outside the norm the remaining 1% of the time. The stuff in books is on a bellcurve. There are things in the extremities which will exhibit different patterns.
3) If your patient brings in a suggestion and you don't have a clue-maybe they are right. I know they lack a godlike MD but maybe they have some idea.
$)Drs need to spend more time listening. Cudos to my new endo. He is saintlike in is ability to listen and help.
That's about it. i guess my book is finished!
The next chapter will be TSH from 7.8 to 1! My guess is there will be some mention of T3 in addition to T4. Stay tuned!
This really does challange the idea that the T4 half life is seven days especially in a very hypothyroid patient. It seems that my body was eating up the AM dose and that left my poor crappy thyroid to pick up the slack in the PM. In the severely hypo patient the type 2 deiodinase in the brain and skeletal muscle is upregulated, whereas the type1 in the liver and kidneys is downregulated. The type 3 deiodinase which degrades the T4 is also downregulated. So likely in my case the brain and skeletal muscle ate all the T4 quickly leaving the rest of my body without any. Another very relevent fact is that the expression levels of these enzymes are regulated by T3, not T4, so it doesn't make biochemical or enzymatic sense to give a pateint T4 only. A combo T3/T4 treatment is a better idea-but try and convince some of the endos of that idea.
So after two weeks I started exhibiting many of the "normal" hypothyroid symptoms. I was constipated and felt really groggy and tired. It was all very lethargic though, nothing like the previous shaky weakness from the presumed hypoaldosteronism. I thought at first maybe I had messed up my circadian cycles taking the two doses so I started taking 50 ug in the AM only. I realized I was also in the PMS stage of my menstruel cycle and there are things I have yet to learn about thyroid binding globule and estrogen levels that may have also explained it. I felt better but started noticing the afternoon ickies returning so I took another 25 ug dose in the PM which made them go away.
So now I am up to 50 ug in the AM and 25 ug in the PM. My endo was very good about the dosage increase. Honestly he took it better than I expected. I tripled my dose between visits and he seems only a bit concerned. I feel like I am knowledgable enough about where my final dose will be and the debate about raisning the dose during treatment that I am comfortable changing things but he doesn't really know that.
The oddest thing is that every week sort of reminds me of some stretch of time in the past. I guess the exogenous T4 suppresses my TSH level. As the TSH is supressed, any T4/T3 production capability I might still have left is supressed. At this time my exogenous T4 is not enough to totally replace the amount my thyroid would make so I end up with a net deficiet of T4/T3. The last few weeks have been a little sluggish and a lot of muscle/ligament stiffness and pain. I thought it was ovulation but it has kept going. I would up my dose on my own but I did tell him I wouldn't do that again at least till we meet next month . poor endo..... So at any rate I am stepping through history physiology wise-back in 99 I felt like this for awhile, back in 2001 I remember this symptom. It is kinda funny.
I think these things will be ironed out in time however I am still a touch concerned by the origin of the presumed hypoaldosteronism. If it isn't adreanl it seems the other not so fun option is hyporenninc hypoaldosteronism due to kidney damage. My endo says that if this were the case my creatine levels would be messed up however my aldosterone levels also looked "okay" during some of the tests ran. 99% chance it is just an adaptation the the extreme hypoaldosteronism but for myself I like to understand the possibility that rarer more severe things may be there. My office mate says she would worry terribly if it was her but for me I would rather be aware of the possibilities and probibilities than hide my head in the ground.
We tested my TSH level in house back at the start of this mess. It came in right about 200 with a %CV of about 10%. The other day it was down to 7.8. Yippie, I am in the single digits!!
Things to be learned:
1) Do Not assume drs are always right. Question them and make suggestions. If thier egos can't take that you need to find a better dr.
2) No realm of medicine or science is fully explored. A textbook may give you answers 99% of the time but you still may have to thinkon your own and recognize a case that is outside the norm the remaining 1% of the time. The stuff in books is on a bellcurve. There are things in the extremities which will exhibit different patterns.
3) If your patient brings in a suggestion and you don't have a clue-maybe they are right. I know they lack a godlike MD but maybe they have some idea.
$)Drs need to spend more time listening. Cudos to my new endo. He is saintlike in is ability to listen and help.
That's about it. i guess my book is finished!
The next chapter will be TSH from 7.8 to 1! My guess is there will be some mention of T3 in addition to T4. Stay tuned!
TSH 200 to 7.8 : part five
Two weeks later and I visit the new guy-who is very new indeed. Later I found out he had only been a real practicing dr for one week when he saw me. The office was very different from the last endos office. Her place was a bit like a meat market with twenty or thirty peoiple waiting at any given moment. You would sit in a little box when they took you back for about thirty minutes and then get a three to five minute visit with Dr. Satan. This office was a small room with some couches. Two or maybe three people would be waiting. The office was filled to the brim with Texas decorations. Somebody here loves Texas! The doc was totally different. He was young and cheerful and didn't seem to be in too much of a hurry. I think i didn't shut up for fifteen minutes straight. I never got a chance to say anything to satan women as she made it clear she didn't have time to talk. This poor guy got his ears talked off. I showed him all my previous test results and told him I wouldn't take the synthroid till the other problem, whatever it was, was resolved. He ran a bunch of tests for cortisol and ACTH as the symptoms appeared to him to be adrenal related even though the ACTH stim test looked fine.
The next week we had another visit. The tests came back fine and he was at a loss. He wanted to try an even lower dose of synthroid-12.5 ug. At this point I was a bit disgusted with the idea as the past couple of weeks had been very tramatic. But it was a very low dose and he was a really nice guy so I figured I'd try it. The first day I saw the excessive urination, headache and nauses come back in small amounts. On the third day I dropped the amount to 6 ug or so given that chewing a tablet in fourths isn't real practical. The symptoms were still there and I was getting a bit weaker. It looked like now I would just slowly get worse and worse. No optimism here. I got a bit herbal on my poor doc and tried to take some licorice rooat as it is the herbal solution for weak adrenals. Licorice prevents the enzymatic conversion of cortisone to cortisol in the kidneys. This allows a large excess of cortisone to be present in the kidneys and bind to the aldosterone receptor, replacing a lack of aldosterone. Usually this enzymatic conversion is what gives aldosterone its specificty as cortisone can bind just as tightly as aldosterone. Licorice "poisening" results if you eat tons of licorice root and mimics hyperaldosteronism (conn's disease).
It worked! I actually felt better. I took several licorice pills and drank some licorice tea. Of course the problem with herbals and the like is that the way they work is so unregualted and you have no idea when they stop working. On the second day I went back to the ER as I guess all the licorice was metabolized and I went from fine to severe tremors in ten minutes. Of course the ER doc said I should TAKE MORE SYNTHROID... Of course I should. Poor guy.
I went back to the endo the next week and told him what happened. He said we could try taking no synthroid at all but I had seen the change taking the synthroid, at least at first. I did feel better. I wanted to feel better. I was tired of living in a shell with wierd symtpoms all the time and feeling like a hyperchondriac. So he was going to try a dose of prednisone with the synthroid. I asked him to consider a very low dose of hydorcortisone instead and he said sure. Then I said that since my symptoms were aldosterone related, perhaps we could just try florinef for a bit first as it won't suppress the HPA axis at all. He said sure why not and sent me home to take 100 ug of florinef and 25 ug of levoxyl. I think he was so baffled.
A week later I was back and doing really well. I felt much better and the florinef was keeping me stable with no apparent side effects. In theory if I was making aldosterone in reasonable quantities I would see edema and raised blood pressure but overall I saw nothing. My endo was so excited. He told me to keep taking the synthroid for five weeks and then we would do more tests and possibly raise the dosage. My poor endo...
The next week we had another visit. The tests came back fine and he was at a loss. He wanted to try an even lower dose of synthroid-12.5 ug. At this point I was a bit disgusted with the idea as the past couple of weeks had been very tramatic. But it was a very low dose and he was a really nice guy so I figured I'd try it. The first day I saw the excessive urination, headache and nauses come back in small amounts. On the third day I dropped the amount to 6 ug or so given that chewing a tablet in fourths isn't real practical. The symptoms were still there and I was getting a bit weaker. It looked like now I would just slowly get worse and worse. No optimism here. I got a bit herbal on my poor doc and tried to take some licorice rooat as it is the herbal solution for weak adrenals. Licorice prevents the enzymatic conversion of cortisone to cortisol in the kidneys. This allows a large excess of cortisone to be present in the kidneys and bind to the aldosterone receptor, replacing a lack of aldosterone. Usually this enzymatic conversion is what gives aldosterone its specificty as cortisone can bind just as tightly as aldosterone. Licorice "poisening" results if you eat tons of licorice root and mimics hyperaldosteronism (conn's disease).
It worked! I actually felt better. I took several licorice pills and drank some licorice tea. Of course the problem with herbals and the like is that the way they work is so unregualted and you have no idea when they stop working. On the second day I went back to the ER as I guess all the licorice was metabolized and I went from fine to severe tremors in ten minutes. Of course the ER doc said I should TAKE MORE SYNTHROID... Of course I should. Poor guy.
I went back to the endo the next week and told him what happened. He said we could try taking no synthroid at all but I had seen the change taking the synthroid, at least at first. I did feel better. I wanted to feel better. I was tired of living in a shell with wierd symtpoms all the time and feeling like a hyperchondriac. So he was going to try a dose of prednisone with the synthroid. I asked him to consider a very low dose of hydorcortisone instead and he said sure. Then I said that since my symptoms were aldosterone related, perhaps we could just try florinef for a bit first as it won't suppress the HPA axis at all. He said sure why not and sent me home to take 100 ug of florinef and 25 ug of levoxyl. I think he was so baffled.
A week later I was back and doing really well. I felt much better and the florinef was keeping me stable with no apparent side effects. In theory if I was making aldosterone in reasonable quantities I would see edema and raised blood pressure but overall I saw nothing. My endo was so excited. He told me to keep taking the synthroid for five weeks and then we would do more tests and possibly raise the dosage. My poor endo...
TSH 200 to 7.8: part four
I stopped taking the synthroid, contrary to dr.satan's demands. The next day I thought I was doing okay so I went up to visit my mother who lives two hours away. While there, drinking a cup of coffee and drinking water, (how wonderful it was to drink water again) I began to get drunk. I started laughing at everything my mother said and wasn't walking so well. I couldn't speak clearly and was sort of slurred. I drove myselfto the ER. By the time I got there I was shaking badly, my speech was so slurred I couldn't speak clearly and I was cognitvely messed up. I was also hyperventilating The got me right to the back. I told the dr about all the endocrine abnormalities and suggested he might want to look at hypovolemic nyponatremia. He was the nicest of ER docs and told me I was having a panic attack. I explained to him that I wasn't normally one to have panic attacks and he said that everyone says that. He told me that I needed to be sedated. I tried to ask him about the slurred speech and cognitive impairment being signs of a panic attack and he said neurology is that way. Yeah... After the benedryl incident sedation did not seem like a good idea.
So at this point I got mad and told him I would take my panic attack home with me. I tried to stomp off in a stubborn little girl fashion but I couldn't make me feet work the right way and think it was more stumbling and dragging than stomping. I got to the ER door and couldn't get it to open. I slammed my body into it three times and it wouldn't move. I finally realized there was print under the handle which said I had to press a button. I stumbled around the wall and found the button and found my father-in-law waiting on the other side of the door. He helped me out to the car and stoped at a store and got me gatorade. I sat in thier living room punch drunk for about three hours sipping at gatorade. Finally whatever was going on passed. That night I tried to sleep but I started to get so cold and my respiration slowed down. My heart was beating so slowly and I felt so calm and groggy, yet clear. I started shaking and felt incredibly relaxed and lathargic. I couldn't find to energy to move. This was new. The coldness and lethargy struck a signal with the hypothyroidism so I took the tinest nibble off of one of the 50 ug synthroids. Within five minutes I felt a little better and I could breathe a bit faster. My heart rate also seemed to have picked up a bit. I tried to tell this to my GP who insisted it was a plecebo effect. But you can't trick a biochemist like that. Later on I learned about the deiodinases which convert the T4 to T3. It turns out in hypothyroidism the expression levels are upregulated. In my case perhaps very upregulated. T4 has an immediate effect within five to ten minutes when I take it.
I had one more ER visit the next night due to the uncontrolled shaking and drop in body temp. Again they told me to take the synthroid. I called my GP that day and she told me to call the endo. I explained the endos behavior and she asked me to come in the next day. When she saw me she was horrified. I was still shaking and very, very weak. I couldn't follow her finger with my eyes at all and couldn't walk very steadily. She did an ECG, sent me in for an MRI, and told me NOT to take the synthroid. Most importantly she gave me a hug. I explained I had made an appt with another endo for the next week and she said that that endo office had a much better dr in it who was trained as a general internist.
That thursday was my last visit with Dr.satan who told me my ACTH test looked great and that I should take the synthroid. She also insisted that I needed to see a nuerologist friend of hers as the numbness in my extremiites was a nerve problem. It seems pretty obvious to me it was a lack of peripheral circulation but whatever. By this time I was back to normal and had actually went running the day before. It seemed rather obvious to me that the synthroid was not the right choice until whatever else was going on was resolved. I take the synthroid-I think I am going to die. hmmm..... It isn't a tough choice for me. I felt okay so I said to hell with her and just waited for the next endo visit with the new guy.
So at this point I got mad and told him I would take my panic attack home with me. I tried to stomp off in a stubborn little girl fashion but I couldn't make me feet work the right way and think it was more stumbling and dragging than stomping. I got to the ER door and couldn't get it to open. I slammed my body into it three times and it wouldn't move. I finally realized there was print under the handle which said I had to press a button. I stumbled around the wall and found the button and found my father-in-law waiting on the other side of the door. He helped me out to the car and stoped at a store and got me gatorade. I sat in thier living room punch drunk for about three hours sipping at gatorade. Finally whatever was going on passed. That night I tried to sleep but I started to get so cold and my respiration slowed down. My heart was beating so slowly and I felt so calm and groggy, yet clear. I started shaking and felt incredibly relaxed and lathargic. I couldn't find to energy to move. This was new. The coldness and lethargy struck a signal with the hypothyroidism so I took the tinest nibble off of one of the 50 ug synthroids. Within five minutes I felt a little better and I could breathe a bit faster. My heart rate also seemed to have picked up a bit. I tried to tell this to my GP who insisted it was a plecebo effect. But you can't trick a biochemist like that. Later on I learned about the deiodinases which convert the T4 to T3. It turns out in hypothyroidism the expression levels are upregulated. In my case perhaps very upregulated. T4 has an immediate effect within five to ten minutes when I take it.
I had one more ER visit the next night due to the uncontrolled shaking and drop in body temp. Again they told me to take the synthroid. I called my GP that day and she told me to call the endo. I explained the endos behavior and she asked me to come in the next day. When she saw me she was horrified. I was still shaking and very, very weak. I couldn't follow her finger with my eyes at all and couldn't walk very steadily. She did an ECG, sent me in for an MRI, and told me NOT to take the synthroid. Most importantly she gave me a hug. I explained I had made an appt with another endo for the next week and she said that that endo office had a much better dr in it who was trained as a general internist.
That thursday was my last visit with Dr.satan who told me my ACTH test looked great and that I should take the synthroid. She also insisted that I needed to see a nuerologist friend of hers as the numbness in my extremiites was a nerve problem. It seems pretty obvious to me it was a lack of peripheral circulation but whatever. By this time I was back to normal and had actually went running the day before. It seemed rather obvious to me that the synthroid was not the right choice until whatever else was going on was resolved. I take the synthroid-I think I am going to die. hmmm..... It isn't a tough choice for me. I felt okay so I said to hell with her and just waited for the next endo visit with the new guy.
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