Post Surgery Update

[Linda R.]

I need to talk to someone. I'm struggling with what's happening to my body. I'm beginning to feel that this forum may be the place to just unload what's happening and maybe help me cope. The surgeon removed all of the right side and 2/3 of the left side of my thyroid. Within the first 12 hours I felt GREAT! I felt like a MONSTER had been lifted off of me and like I wasn't dying any more. That was Tuesday, May 28th and by May 30, Thursday, around 7 a.m. I was woke up by a sudden rush of chemical dumping down my throat and hitting my heart. Immediately I could feel my heart just speed up and the intense feelings of adrenaline returned. I was beginning to feel the same symptoms of what'd happened originally with the hyperthyroidism. By Sunday, all the symptoms had returned and I was only able to get 4 hours of sleep in each 24 hour period. Then it dropped to 2 hours by Monday June 3. My post op visit to the surgeon was Wednesday, June 5. I'm also still itching from my suppressed reaction to the Methimazole and the prescription for the beta blocker was switched because my heart rate had been 53. So I'm now on Propanolol 5 mg as needed instead of the metropolol 12.5 twice a day. I like the beta blocker switch. My body is crazy. I'm running to the bathroom and so I'm really restricting my diet to paleo. But I've gained 5 lbs in one week and last night I was constipated even though I was following the paleo diet. They tested the TSH, T3, T4 but said it's only a week out and my numbers will be more accurate by week 4. I'm freezing and then I'm hot and sweaty and my body aches like I have the flu. I'm so exhausted. I'm feeling like I'm going hypo and then returning to hyper. I'm emotionally a WRECK! I cried my self to sleep last night. BUT I slept! Now I'm feeling so tired and not the horrible revved up feeling I've had with no sleep. I feel soooo SICK! My husband, Glen took the call yesterday from the lab results because I was with my graduate at his University yesterday helping him even though I' was so sick with no sleep...I'm Managing. I looked at the numbers and it looks like the T3, T4 are low and the TSH is still hyper. I'm going to call the doctor to go over the numbers but Glen said they want to give me a microgram of levo something...I'm so sick of medications and my reactions that I cried and I'm such a mess with the hormones that I'm not willing to take one more thing until I know this methimazole is out of my system and that I'm not compounding with everything else. I have to wait a few hours to talk things through but I thought I'd at least talk to you good people here on this forum to help me try to deal with what' happening and make sense of everything. I know this post isn't the best and I'm rambling on. My sweetheart is frustrated that I'm reacting the way I am and I'm frustrated because I don't know he understands how miserable it's been to be so allergic that I'm scratching my skin til it bleeds and I've bruised everywhere because of the deep itch I've had to keep the hives in check. I'm not willing to go back on it I'd rather die than suffer. He's struggling and upset that I'm feeling that way and I know I'm being emotional especially with no sleep and all that's happening and maybe I'm going hypo and I'm switching now. I'm feeling trapped. I don't want to suffer like this and I'm not sure those around me quite get it BUT they've suffered too. I grateful for all the love and help I've had and I've kept positive but I'm so not doing well. I'm crying just writing to you because I need to have help and assurance that I can do this. My daughter flies out of the country on Tuesday for her mission and I'm feeling emotional about that too and I'm still working through my parenting with the youngest kids and my other son is trying to get through his things for the university which he's done on his own...he 's been incredibly responsible as well as my other daughter who's leaving. I'm feeling like my family dynamics are changing all at once and my health is compounding how I'm feeling. I'm sorry...I just need to unload I guess.

[tex]

Hi Linda,

I'm sorry that you're having such devastating symptoms. When you say your TSH is "hyper", do you mean that it is below range?

Also, did your doctors carefully check your parathyroid function? If not, it's possible that your parathyroid could be the cause of most of your symptoms.

I hope you can begin to see some rapid improvement, soon.

Tex

[Linda R.]

I just spent the last couple of hours on the phone with the surgeon's office...speaking with the P.A. My labs show T3 52, T4 3.0, TSH 14.56. At least the hyperthyroidism isn't a factor with the current numbers...so that means I'm no longer a medical emergency risk. She said that I'm Induced Hypothyroid but the numbers will continue to change as what is left of my thyroid dumps TSH trying to get T3 & T4 to work...but that'll be another 3 weeks. I have the option of taking .25 micrograms of Levo-thyroxin if my symptoms become unbearable. I'm thinking I want to be patient with myself and work through 3 weeks to see if my thyroid will get better on its own. It's my HOPE and they said it's a chance to hope for. She also addressed that fact that I've been on Hydrocortisone 20 mg twice a day for over a month and to get that tapered off and stopped. So I'm reducing that by half for 5 days and then in increments of less 5 mg each 5 days. By the end of my tapering off, I'll be ready for a complete metabolic panel, TSH levels and antigen testing. So, I feel better in talking to them about all that's going on. She mentioned how awful I will feel and what's interesting is how CRAZY my bowels are being. I'm going to need to figure out the diet again; how to address it; go over which supplements are needed to support my thyroid to help it wake up (hopefully); and if I can do it...begin the cardio and weight bearing exercises. She said unfortunately, these things come in pairs but what I'm doing is worth the effort to see if it'll prevent my body going into diabetes or another condition but I don't remember what that was...it had to do with the bowels. I feel blessed that you guys are here. I appreciate your efforts so much and giving me a place to talk. Thank you Tex for writing back. The surgeon, Dr. Douglas Deny, was very much aware of the parathyroid and I didn't think to ask about it today. Tex, Am I supposed to have that checked regularly like I am with the TSH??? I know that he tested my calcium right before surgery and right after and if I remember correctly, he'd said it was 50 afterwards and that it was high before and after. He wasn't concerned about it. He specializes in the thyroid and this experience with this doctor and staff has been so AMAZING and not pushy but listening and supportive to trying alternative healing.

What's interesting is she said that she suspects my numbers will still drop. I'm concerned about going on anything until I'm off everything. She also said that the hydrocortisone could be what's causing many of my symptoms so it's valid to do a wait and see if I can manage it. Sorry I was so emotional earlier. I've been thinking about my thought process and comment I'd made to my husband about choosing to die rather than suffer. Either option still affects everyone. It's probably better to suffer in living and endure to the end, no matter what, than to give up and start thinking like that. Ugh. I'm glad to be alive and it's challenging to stay optimistic but I'm working on it. I think about my Savior and He didn't give up and say...nope, I'm not going to suffer. He thought about all of us and though He didn't like it, he chose to endure. Because He chose to endure, we get to live again. It's tough to keep perspective but when looking for a pattern in all things, that's what pattern He did. So, I'm thinking I need to work on my thought process and keep counting my blessings. I have countless blessings. I have a fabulous family and friends who are so supportive and helpful and loving. I have much that I'm grateful for. I'm hoping the family clinic gets back with me soon so I can go over the supplements again and make sure I'm taking what I need to wake up what's left of my thyroid.

[LindyLou]

Linda, I'm so sorry you are having such a rough time. Take a deep breath and tell yourself this is only a moment in time. You have been artificially induced into hypothyroid and you body is in the middle of freak out mode. It will not last. You will need to get on thyroid meds tho and it's a slow process titrating up to your appropriate dose. If you can, pull up some Chinese reed flute music on youtube and just breath. I have Hashi's and when I experience the swings from hypo to hyper and vice versa I find this helps calm me immensely! Know you are not alone. We will try to help wipe away those tears,
Love,
Linda

[tex]

Hi Linda R,

No, it's not necessary to check parathyroid function unless there's a reason why it might be out of whack. Parathyroid problems are not common.

It sounds as though your doctor is on top of things, so as mentioned, you probably just need some time, and you will begin to feel better as your system slowly self-corrects.

Thank you for the update.

Tex

[JoAnn]

Hi Linda, I'm glad we talked today and I got to see you in person. I didn't realize you had posted this update. I know you are reeling from all the effects of medication, surgery, and your body adapting and trying to stabilize. Seeing you and speaking with you, you really do have an amazing strength within you and a motivation and will to get through this. I know you will and just know we are all praying and encircling you with support and love. You are a woman of great faith and I know this sustains you. I know you are confident in the doctor you have found and the care you are receiving. As you go through this difficult period, I hope you can find places of peace to calm your mind and soul. I know you give 200% to your family and other things, but remember to take care of you first right now and everything else will work out. Love you and talk to you soon, JoAnn

[Gloria]

Hi Linda,

I hope you can get through this difficult time. It sounds like it is a temporary problem. You are going through some changes in your family dynamics, and that also requires adjustments. Things will get better.

Gloria

[DebE13]

Hi Linda,

I hope you are feeling better. It is difficult and frustrating because the people we live with dont fully understand the depths of our problems yet we feel guilty because they also suffer along with us. Here is the perfect place to be emotional because we care and understand.