Quote from kmatthew:I was diagnosed with Follicular thyroid disease in July. Had part of my thyroid removed. The nine tumors that previous doctor missed for a year and half thank goodness turned out to be benign. I was started on .5 of Synthroid, and did really well except for paying attention.
A few weeks later Cytomel was added to help with that. I did GREAT until around 5:30 in the evenings, and it would wear off. At my 8 week checkup the blood showed that I was severely deficient. and my dosage was increased from .5 of Synthroid to .112 because I am sensitive to medication, and they wanted to build up gradually. I was told this is a low dose, and it would not bother most people, but it went haywire in me.
I began feeling dizzy for short time the first day I took it around lunch. Got worse and longer the next day, so I called. We played phone tag for a day or two, and my blood sugar was dropping real low, and I was told to cut back down to the .5, but before I could do that because I take the dose in the morning, I woke up with Chest pains, shortness or breath, fever. and I had such a hard time remembering anything for days after the epidsode. Blood showed I should stay a .5 that went well for 3 days, and
I began to get really dizzy when getting up out of a chair and when moving around such as walking or going down stairs. I went to the doctor, and found out through an EKG that my blood pressure would drop when standing, and then it would rise when standing depending on the mood. I never fainted. I was sent to a cardiologist who attached a monitor, and did a tilt test which showed that I am having changes in blood pressure but not always dropping, and not always rising.
They have pretty much ruled out any problems with my heart. My blood pressure would go from 120/60 to 74/58 with a heart rate of 120. or it would start at 68/58 with 84 heart rate and raise to 94/70 with a heart rate of 128, which they noticed a change, but evidently I felt more awful than perhaps I should with these rates.
It has been almost 4 weeks, I have not been back to work because I am so tired, dizzy when standing, shortness of breath, and I cannot stand for longer than around 5 minutes without becoming exhausted. Another test that I had was an Insulin tolerance test because I had hypoglacimic problems before all this started, and this test showed that I have very low cortisol.
Still waiting to see rest of test to see if this is Addisons but they think it may be pituitary due to the fact that I also have a history of elevated prolactin (in the 90's) and i currently take Dositnex for that with no tumor.
I have had two MRIs in the last 2 years. I also passed an adrenal test in the office. I started Cortef two weeks ago. 5 mg twice daily and that helped for 2 days, and then it quit. When cortisol levels came back deficient, they added .1 of florinef which really helped for 2 days and then it stopped. Friday added an additional dose of cortef which helps in the evenings, but by the time that kicks in it is time to go to bed and you have felt bad for the whole day.
I am still dizzy but am learning to live with that, but biggest problem is the MOOD SWINGS AND THE DEPRESSION which is so not me. I get so tired from only doing one thing, and it feels like I weigh alot.
Just had thyroid readings Thursday, and for the first time they are normal. Doctor suggested possibly adding an antidepressant until this gets under control, but I do not want to put a bandaid on sadness, when I was never sad before 3 weeks ago. It had something to do with the change in dosage.
It felt like I had a stroke because I had such a hard time remembering things, keeping the train of thought, and I felt as if I had a brain fog for days.
They have since upped me to .75 of synthoird, decreased the cytomel to one daily, and my counts for thyroid were normal except for the T3, which they told me will have to wait until the rest of this mess is straight.
I am at my witts end because I feel so rotten. My legs hurt really bad now, so much that I limp, and I am only 36!!!!!!!!!!! I just feel like my laundry list is growing, and I can't seem to get it through the cardioloigist and endocrinogist head, that although every test possible has been run, that something is still not right........ I was FINE.
It feels like part of me died three weeks ago, and I really don't recognize who I have become. I know that I am classically depressed, but I know it is not something that has been building, it is a result of this illness, and I am not sure how I feel about hiding that fact with another medicaiton, but I have to do something.
Have any of you ever known anyone who has experienced this, and what did they do.
I am considering seeing a neurologist just to make to sure that nothing else went wrong. I hate to be angry at my endocrinogist because she basically saved my life!!!!!! She knew to look for the cortisol. All the tests they run take so long to get the results back. Cortisol counts were baseline 21.2 first draw 15.2 second draw 7.9 Final draw 18.2. My T3 318 T4 1.3.
Sorry for the lengthy email but I am a mess!!!!!!!!!!!!!!!!!
I hope you don't mind, but I am quoting your post here with some white space added. It may just be my old eyes, but I couldn't read that very long paragraph. I thought, if I can't read it, perhaps someone else who could actually give you some helpful advice might be having trouble that way, too.
Sounds like you are having a really miserable time. I hope you find answers and relief soon.
Edit: Okay, now I have been able to read the whole thing and I have to wonder if all or most of your symptoms are the result of still being undermedicated, that you seem to need to take the increases in doses very slowly, give some time with each increase. While your description of symptoms is not unlike what I experienced, it seems to be more severe. I thought I was dying before I was diagnosed. The leveling process was miserable, but five months later it just seems like a bad memory for me.
Please post your lab results by name of test, result and lab range for each one. I was very miserable until my TSH was down around 2 and I'm probably closer to 1 than 2 now. Do you have a TSH lab report. Are those FT3 and FT4 or other results? Please always post the full namee of the test and the lab ranges because labs use different tests and ranges.