My thyroid my be a little different

October 8, 2008 at 2:34 pm

Hi DaRoag! I just had my thyroid gland removed due to showing cancer and had a multinodular goiter where one nodule had the cancer inside that nodule. I also have Lupus and a B-12 problem and had spine surgery in May. I showed through a EMG/NCV that I had CIDP in June after having a major attack on my nervous system. My Endrocrine doctor seems to think that I may have been in a thyroid storm but possibly because of my already being on steroids that it stopped the storm from putting me into a life threatening situation but he’s still not sure if my CIDP is from the thyroid because I have Lupus and a past history of CNS lupus. I go into Duke on November 6th to be seen for this CIDP issue and have to rule out which is causing the CIDP! Thyroid, lupus or is it something else. Me! I am hoping for it being thyroid for I was told that can be reversed. No IVIG treatment done yet! I was hyper instead of hypo and they also said I have Graves Disease. After my surgery they said I will go into hypo now because I no longer have my thyroid. I have not seen my labs yet and have no idea what my levels are right now. But I wished I knew the results. I’m trying to learn how to read the TSH labs so I will know what I am dealing with. The doctors want me off the steroids too and are trying to wean me off of them but having lupus and inflammatory problems what can I do? See I had CNS lupus and that you have no choice but steroids. Pulse Steroids and then now back on pills form. Down to 6 1/2 mgs now but don’t know if I can go any lower. Have no idea what Duke is going to do as far as IVIG’s or not! Will find out in November! The Endrocrine I have here in my town told me that CIDP is very treatable and reversible if it’s caused by the thyroid gland and said I may not even have to have IVIG’s. But if it’s lupus then yes I will need IVIG’s if it’s CNS Lupus causing this. I’m not getting my hopes up just yet about that issue until the doctor at Duke decides my fate! Since they removed my thyroid out, I don’t seem to be doing to bad. Actually am feeling better! I have been given RAI treatments though to kill off thyroid cells within my body and 1 was given before surgery. Have had two initial treatments of that and they have me scheduled for 1 radiation treatment this coming Friday. After that I will be going to Duke and seeing the Endrocrine at the same time. So not sure what they plan after the radiation treatment. Each week is something new! They are watching me closely right now because of all my other health issues! I am being seen every week right now until they get me at Duke! Then what Duke does with me, I have no clue! LOL! They took my levels last week but I don’t know what they are reading just yet and will most likely find out Friday. Me being hyper and not knowing my levels or have my labs, I don’t know where I am in levels right now. But to be telling my hypo, I sure can’t tell too much! I was not getting any sleep before they removed it and now I am sleeping all night. My energy levels are getting better and I can see a minor difference in that. Not as nervous but still have some anxiety feeling but far much better than before. No popping out in sweats like I was before! Don’t get me wrong I am not 100 percent perfect but compared to 3 weeks ago before my surgery, I was 100 percent totally non functional. Today will make 15 days going into my third week and I feel like I have gained 20 percent of my life back! Sleeping all night now, not as nervous, not as hyper, energy level seems to be gaining, more awake in the daytime, no longer having the horrible tremors, and the carpul tunnel fire pan hands that were burning all the time has eased up some. Arms just feel weak but not burning like they were before. I am hoping my CIDP was caused by the thyroid and not CNS lupus. And with me doing this good right now maybe I will get lucky and not need further treatments except for keeping those levels in a good range. They did place me on a diet though. Carborhydrate diet because I have high cholesterol and hypoglycemia. And did not want me eating certain vegetables right now. Plan on asking about that one! I’m doing good right now compared to 3 weeks ago. Actually watching TV now and not falling asleep missing 10 parts of the movie. I would fall asleep from fatique and was watching a good movie and then wake up and missed 30 minutes of the movie. Fall back asleep and wake up again and was into another movie missing the movie I was watching! LOL! TV these past few weeks have been enjoyable now!
Wished I could answer your questions but am new to this thyroid thing myself and still learning online what I can! So confusing about the hypo and hyper and levels. I’m trying to understand the concept of it all but confused.
They said after my surgery I would now be hypo. But I am not really feeling much of hypo going on unless I just am so grateful they got this cancer in time and with surgery and pain and not feeling all well that I just don’t notice it. But I do notice it! Thats just so weird! I do notice improvements!
Wish you my best and hope you do well!