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.
Saturday, October 29, 2005
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.
TSH 200 to 7.8 : part three
So...getting to the point of the story...my GP calls me on a Sunday night about two weeks later and asks me if i feel okay. It turns out my TSH level was >150. She said it was a lab fluke as I didn't have any hypothyroid symptoms so we'd retest it. We did that week and again it was at TSH>150. She was baffled as I am tall and thin, somewhat underweight and only had very mild fatigue. She hesitantly started me on a 75 ug dose of the generic levothyroid, had me go in for an ultrasound on my thyroid and tested all the other hormones as I also had been lactating a bit (I know, it seems like this would be a big deal but I nursed my kid so I didn't think much of it). The first doses were like the ritalin only better. I felt fantastic. I had so much energy and my brain was so clear and focused. I could "feel" again. After the fourth dose I still had the good effects but I started to feel bad as well. In the AM I would be okay but by three PM I would have a horrible headache, be very nauseated, and get very weak and shaky. I started having mild shooting pains in my arms and legs and urinating like a pregnant woman, only worse. I started to notice odd things about food like tea tasted really flat and I was having really strong salt cravings. On the sixth day I stopped the meds as I was feeling so terrible. My GP was on vacation so I didn't want to call her and bug her till the following Monday. I actually felt much better for most of the day.
That evening I started to feel like my hands and feet were really swollen and burning-to the point of explosion. They didn't look swollen but felt really hot to the touch. I started having stabbing pains in my arms and legs and was hurting pretty badly. My first venture into internet support groups was at this point when I posted what was going wrong with me on a thyroid message board. I finally called my GPs office and had her paged as I felt so bad. She called me right back and told me I was having an allergic reaction to the synthroid and I should take some benedryl. So I went down to Target and bought a box. I was hurting so much I tore the box open and ate four of them in the store-perhaps it was a bit too much benedryl but I sort of equated it to ibuprofin and thought twice the dose would just work twice as well. We all make mistakes in life. I made it home still feeling bad and got back onto the message board where three people had logged on and told me I might be having an adrenal crisis due to the initiation of the thyroid hormone treatment. I tried to reply but realized I couldn't type anymore and was starting to tremor. I stood up and fell over and then my husband got me into the car and to the ER which is just around the corner. I didn't want to freak him out so I told him to go home and stay with our nine year old son and I'd walk in by myself. He dropped me at the entrance and left.
I made it to the desk but then couldn't walk anymore as the tremor had gotten so bad. I was also starting to breathe really strangely, very spasmadically and in spells where I would take several very deep and then several very shallow breaths. The took me straight back and then my husband was there as he had wanted to make sure I made it in okay. I couldn't talk at this point and the nurse and dr kept telling me to try and control my breathing. I could hear them but I couldn't really speak clearly. I finally composed myself a bit and tried to tell the ER doc what was going on. I said I might be having an adrenal problem but I didn't know. He asked me why i thought that and I said it had been suggested to me by somebody on a message board. He looked very skeptical but I think he tried to take care of me the best he could. My electrolytes looked okay but my TSH was 89. He concluded I maybe needed more synthroid and that I should NOT stop taking it. He said it wasthe benedryl that caused all the problems. I didn't want to argue with him but i decided not to take the synthroid the next day and called up an endocrinologist.
They got me in that day. She-henceforth labeld as Dr. Satan -my first endocinologist quickly looked me over and decided I had adrenal insufficiency and told me not to take the synthroid. She ran cortisol, ACTH, and aldosterone tests and set up my appt for the following week. I made another short ER trip in that time as I had started to tremor again. I had read up in the week enough on adrenal problems to realize I might have low salt levels so quickly started increasing my salt. While waiting in the ER I drnak three V8s from the vending machine and felt much better and left.
When I went back in to see Dr.Satan she said my cortisol levels and ACTH levels were fine and I just needed a lower initial dose of synthroid. So I was to start at 25 ug for a week and then go up to 50 ug for a week and the visit her again. By this time I had read a lot more, and having a BS in biochemistry and an MS in biophysics let me understand quite a lot of it, so I was a bit skeptical. But I figured this lady had been doing this a long time so I should trust her judgement and follow her guidance. She was board certified and all that jazz. Surely she knows her stuff.
I later noted she didn't have my aldosterone test at that point and it was below normal but again I figured that she had looked it over when it came in and would let me know if there was a problem. So I started my meds like a good patient. After the fourth day all the old symptoms were back-the headache, nausea, weakness, fatigue, tremor, excessive urination and salt craving. I started to increase my salt intake which initially seemed to help. I also noticed a new symptom starting as the days went on-numbness in my hands and feet. However drinking a bit of salt water of gatorade or V8 would control all the symptoms and I would feel okay. After about five days the salt water didn't make me better, it just seemed to keep me kicking. I would go through phases of grogginess and extreme fatigue. In the middle of the second week I got stuck in a long meeting where all I could drink was water. It seemed like even drinking the samllest amounts of water made me urinate out much more water and my hands started to get very numb. Half way through the meeting my hands were ice cold and pale. If you pinched the skin to test for dehyration it would just sit there all folded up. I left the meeting and kept running into doorways and my speech was starting to slur. I called my endo and got voice mail. I left a message but after waiting an hour at my office nobody called me back. I got in my car and started driving home. I couldn't feel my hands but thought if I could just get home and lay down I'd be okay. Halfway there I started having spasms under the left side of my chest. Like the whole left side of my body was caving in upon myself. I was terrified at this point and was going 105 mph to the closest ER. I got there, explained what had happened and then told me I was likely hypoglocymic and to have a seat, but not to eat or drink anything. So I waited for about an hour very incoherent and confused, staggering when I tried to walk. I finally found the vending machine and drank three V8s in a row. After a few minutes I felt a much better and left.
I took a half dose of syhtroid the next day as I didn't want a repeat of the first round of stopping synthroid. I called the endo and got some nurse who said it sounded like I was having an electrolyte problem-what a smart kid-but then he said he wasn't a dr or even a nurse so he'd get them to call me back. The nurse calls me back and says to make an appt with a cardiologist as I have a heart condition and that's why the synthroid makes me ill. She also said to cut the dose of synthroid by half. The next day I took no synthroid, went to see the cardiologist who said my heart was fine. During the day I kept going through delerius spells. I would get really ahaky and weak and drink some gatorade, which would then make me feel really groggy and delerius. The endo called me herself at 8 am and said to come in for an ACTH stimulation test that afternoon. When I showed up she said my electrolytes where fine and yelled at me that they would have seen that and they had tested that-which they had not. She yelled that she had never seen anybody like me in 5000 patients and 35 years of practice and that I just needed to keep taking my synthroid. She said she'd do the test but that that wasn't what was wrong with me. I couldn't understand why she was so angry and hostile. I had never been argumentative or even suggested what might be wrong with me. I had tried to keep track of what had happened to me over the week on a piece of paper. She wouldn't even look at it and her nurse practitioner told me she really needed the condensed version. I had had four spells of delerium that day, one of them while sitting in the cardiologists waiting room and she wants the condensed version.
They took me to a little room to wait for the nurse where I sat and cried. I am not by nature a crier. I am actually pretty tough but I was in such bad shape and Dr. Satantic Evil demon seemed to think I was making it up. The nurse came in and gave me the ACTH shot. Within ten minutes I felt so much better. I stopped hurting, could think somewhat clearly, and felt okay. I left after the blood draw and ate the first meal I could eat in the last two weeks. I drank two full glasses of tea and felt so much better. It was so amazing how good it could be to eat again. All told I lost 15 pounds in two weeks.
That evening I started to feel like my hands and feet were really swollen and burning-to the point of explosion. They didn't look swollen but felt really hot to the touch. I started having stabbing pains in my arms and legs and was hurting pretty badly. My first venture into internet support groups was at this point when I posted what was going wrong with me on a thyroid message board. I finally called my GPs office and had her paged as I felt so bad. She called me right back and told me I was having an allergic reaction to the synthroid and I should take some benedryl. So I went down to Target and bought a box. I was hurting so much I tore the box open and ate four of them in the store-perhaps it was a bit too much benedryl but I sort of equated it to ibuprofin and thought twice the dose would just work twice as well. We all make mistakes in life. I made it home still feeling bad and got back onto the message board where three people had logged on and told me I might be having an adrenal crisis due to the initiation of the thyroid hormone treatment. I tried to reply but realized I couldn't type anymore and was starting to tremor. I stood up and fell over and then my husband got me into the car and to the ER which is just around the corner. I didn't want to freak him out so I told him to go home and stay with our nine year old son and I'd walk in by myself. He dropped me at the entrance and left.
I made it to the desk but then couldn't walk anymore as the tremor had gotten so bad. I was also starting to breathe really strangely, very spasmadically and in spells where I would take several very deep and then several very shallow breaths. The took me straight back and then my husband was there as he had wanted to make sure I made it in okay. I couldn't talk at this point and the nurse and dr kept telling me to try and control my breathing. I could hear them but I couldn't really speak clearly. I finally composed myself a bit and tried to tell the ER doc what was going on. I said I might be having an adrenal problem but I didn't know. He asked me why i thought that and I said it had been suggested to me by somebody on a message board. He looked very skeptical but I think he tried to take care of me the best he could. My electrolytes looked okay but my TSH was 89. He concluded I maybe needed more synthroid and that I should NOT stop taking it. He said it wasthe benedryl that caused all the problems. I didn't want to argue with him but i decided not to take the synthroid the next day and called up an endocrinologist.
They got me in that day. She-henceforth labeld as Dr. Satan -my first endocinologist quickly looked me over and decided I had adrenal insufficiency and told me not to take the synthroid. She ran cortisol, ACTH, and aldosterone tests and set up my appt for the following week. I made another short ER trip in that time as I had started to tremor again. I had read up in the week enough on adrenal problems to realize I might have low salt levels so quickly started increasing my salt. While waiting in the ER I drnak three V8s from the vending machine and felt much better and left.
When I went back in to see Dr.Satan she said my cortisol levels and ACTH levels were fine and I just needed a lower initial dose of synthroid. So I was to start at 25 ug for a week and then go up to 50 ug for a week and the visit her again. By this time I had read a lot more, and having a BS in biochemistry and an MS in biophysics let me understand quite a lot of it, so I was a bit skeptical. But I figured this lady had been doing this a long time so I should trust her judgement and follow her guidance. She was board certified and all that jazz. Surely she knows her stuff.
I later noted she didn't have my aldosterone test at that point and it was below normal but again I figured that she had looked it over when it came in and would let me know if there was a problem. So I started my meds like a good patient. After the fourth day all the old symptoms were back-the headache, nausea, weakness, fatigue, tremor, excessive urination and salt craving. I started to increase my salt intake which initially seemed to help. I also noticed a new symptom starting as the days went on-numbness in my hands and feet. However drinking a bit of salt water of gatorade or V8 would control all the symptoms and I would feel okay. After about five days the salt water didn't make me better, it just seemed to keep me kicking. I would go through phases of grogginess and extreme fatigue. In the middle of the second week I got stuck in a long meeting where all I could drink was water. It seemed like even drinking the samllest amounts of water made me urinate out much more water and my hands started to get very numb. Half way through the meeting my hands were ice cold and pale. If you pinched the skin to test for dehyration it would just sit there all folded up. I left the meeting and kept running into doorways and my speech was starting to slur. I called my endo and got voice mail. I left a message but after waiting an hour at my office nobody called me back. I got in my car and started driving home. I couldn't feel my hands but thought if I could just get home and lay down I'd be okay. Halfway there I started having spasms under the left side of my chest. Like the whole left side of my body was caving in upon myself. I was terrified at this point and was going 105 mph to the closest ER. I got there, explained what had happened and then told me I was likely hypoglocymic and to have a seat, but not to eat or drink anything. So I waited for about an hour very incoherent and confused, staggering when I tried to walk. I finally found the vending machine and drank three V8s in a row. After a few minutes I felt a much better and left.
I took a half dose of syhtroid the next day as I didn't want a repeat of the first round of stopping synthroid. I called the endo and got some nurse who said it sounded like I was having an electrolyte problem-what a smart kid-but then he said he wasn't a dr or even a nurse so he'd get them to call me back. The nurse calls me back and says to make an appt with a cardiologist as I have a heart condition and that's why the synthroid makes me ill. She also said to cut the dose of synthroid by half. The next day I took no synthroid, went to see the cardiologist who said my heart was fine. During the day I kept going through delerius spells. I would get really ahaky and weak and drink some gatorade, which would then make me feel really groggy and delerius. The endo called me herself at 8 am and said to come in for an ACTH stimulation test that afternoon. When I showed up she said my electrolytes where fine and yelled at me that they would have seen that and they had tested that-which they had not. She yelled that she had never seen anybody like me in 5000 patients and 35 years of practice and that I just needed to keep taking my synthroid. She said she'd do the test but that that wasn't what was wrong with me. I couldn't understand why she was so angry and hostile. I had never been argumentative or even suggested what might be wrong with me. I had tried to keep track of what had happened to me over the week on a piece of paper. She wouldn't even look at it and her nurse practitioner told me she really needed the condensed version. I had had four spells of delerium that day, one of them while sitting in the cardiologists waiting room and she wants the condensed version.
They took me to a little room to wait for the nurse where I sat and cried. I am not by nature a crier. I am actually pretty tough but I was in such bad shape and Dr. Satantic Evil demon seemed to think I was making it up. The nurse came in and gave me the ACTH shot. Within ten minutes I felt so much better. I stopped hurting, could think somewhat clearly, and felt okay. I left after the blood draw and ate the first meal I could eat in the last two weeks. I drank two full glasses of tea and felt so much better. It was so amazing how good it could be to eat again. All told I lost 15 pounds in two weeks.
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