TSH was 7.94 and T4 normal I’ve had RA for over 35 years, hashimotos?

Good Morning, I got discouraged myself yesterday. Being new to Georgia their approach is very different than Boston. I had my tsh done monthly to be sure it was at the correct number for me. I need to know because I have chronic digestive disorder, my colon doesn’t work without laxatives and I have gastroparesis. Laxatives don’t always work so thyroid has to stay spot on.

I’ve been on Mayo for a long time looking for help. To keep my colon it helps to know my thyroid levels. In Boston every month. Yesterday, I said to endo through portal, it will be a month April 1 please order it and she said you don’t need it monthly I explained that so in 3 months we can check. Now, I’ll skip over her, reach out to pcp with exaggerated symptoms to get the dam lab. Every month I go through hoops. I’ve even paid out of pocket at Quest. My insurance has covered it monthly for 4 years.
I don’t get why they just don’t follow what you’ve been doing for a long time.
I also have a nodule. I had some discomfort during physical in the thyroid area but my nodule is in the strap muscle and it’s a watch and wait.
I did write back to endo telling her don’t agree with this new approach at all. It’s not what I’ve been doing. I’m waiting her response. It gets stressful because it’s a lab and I’m paying, not the doctor so why not.
Have a great day…Joanne

I’m so sorry you’re going through this. Change is difficult, especially when you yourself know what to do for yourself. I’m writing because your post caught my eye about your colon health. I had 18” of my colon removed and resected due to severe diverticulitis, which I suffered for years on and off with. Since my surgery in April of 2022, I got Covid in December of 2022 and lost my taste and smell. I also no longer get hunger pains and am wondering if it’s from my colon surgery. I’ve been seeing a pain management clinic at our Northwestern Hospital in downtown Chicago for Stellate Ganglion Block injections into my neck, to regain my taste/smell and so far (going in for a 3rd) some, but not much improvement. It’s been awful, to say the least, not tasting or smelling. I was not aware that your Thyroid had anything to do with your colon, but maybe you can explain that to me. This may be why I can’t taste or smell. You should also know that I am on Synthroid for Hypothyroidism and Hashimoto’s.

Hi, hypo can cause constipation but not related to my motility disorder. It can make my constipation worse if not in normal range. My Gastro now and in the past say I need a miracle. There is no magic wand treatment for me.
I had acdf 3 fusion surgery June 2020. If not familiar,it’s cervical spine area. It was long surgery and when I woke up my bowels never did. Doctors have tried everything but nothing works. I was scheduled twice for a total colectomy. Once in 2020 then early 2021. I just couldn’t do it. I felt it would only give me new problems to deal with. It’s not cancer or I would have done it.
So between my diet, a lot of laxatives and keeping my tsh in the normal range is all I can try to control. I’m 69 and want to keep my colon.
I had Covid for my first time Feb 10th and still no taste or smell but the doctor said it could take time to return, like my bowels,lol. My diet is so bland for now I’m okay waiting. I do not know if our thyoid is related to loss of smell and taste. I think it’s a Covid side effect unfortunately for some of us.
Best wishes…Joanne

Joanne,
I had Covid in December of 2022 and since then and up until now, have not gotten my taste or smell back. It’s been a year and 3 months. I will be having my 3rd Stellate Ganglion Block on Wednesday and am hoping since they’re injecting the left side of my neck this time, I will regain it. They’ve only injected me on the right. My sinuses seem to be more blocked on my left side, so I’m hoping the block will open something up! My general practitioner told me my loss of taste/smell could be from my hypothyroidism. If that’s the case, I’ll never get it back!😞

@mothermary1
What levels did you have your ACDF surgery? Did you have cervical myelopathy affecting/injuring your spinal cord? Did you have an accident? Did you have bowel problems before surgery?

I had ACDF at C5C6 level due to myelopathy and DDD/spinal stenosis which was affecting my balance, bladder, headache/neck pain, arm/hand/leg/foot weakness and numbness/clumsiness. The surge helped recover some function but some symptoms are returning (had surgery January 2022).

Do the surgeon injure you spinal cord during ACDF which is now affecting your colon?

Hi, the truth will never be known. I had c3-c7. I had same diagnosis just about and balance off, dropping things, severe pain and leg foot pain. I have 3 cages in.
Prior I did have some constipation but always resolved itself. I never took laxatives. I researched my surgeon well. He was a neurosurgeon and a nerve specialist assisted. I spoke to his former patients as well. It was done at Beth Israel in Boston. I researched the anesthesiologist as well. Everything was a green light except it was during severe Covid. I tested negative prior to admission and negative at discharge and again 5 days later. I was in the spine icu and received great care.
I’m allergic to pain meds so was not opioid induced. I’ve always had my bladder take its time waking after anesthesia and usually get catherized but it comes back within hours.
My bowels just never did. It will be 4 years June. Yes, I get neck pain now again and turning while driving sometimes tight. I did PT for months after including water PT. I’ve had a few surgeries and this never happened. I’ve been seen by more doctors than you can imagine and I get the same answer. So, this is my life. I accept it because it could be worse. I have great days and very bad days but I push through.
I have accepted I’ll never know why. I’ll keep my colon as long as I can.
Joanne

@mothermary1
I am glad you have some level of acceptance of the reality you are facing. Doesn’t make it easier but you can only focus on what is within your ability and control, with God’s help, and your medical team’s expertise. I have accepted my new reality of being disabled at 54. I had a career of 30+ years that is gone and I need to provide as a single parent of a teenager on my own. Not easy to do much. I’m only at 10%-20% functioning compared to my normal 100%.

Have you had updated MEI of your cervical spine? I did recently and everything looks ok but I am having returning symptoms so hoping a MRN/EMG for nerve/spinal cord damage assessment, spinal tap for CIDP and brain MRI to rule out MS will help identify what is going on and see if anything can be done to slow degeneration and treat/manage pain to improve my ability to function better.

@mothermary1
Have you ever been tested for small fiber neuropathy with a punch biopsy? SFN can impact your autonomic nervous system which can include your GI tract?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6502186/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7880310/
https://www.mayoclinicproceedings.org/article/S0025-6196(12)62574-9/fulltext

I’ve never heard that about hypo and taste and smell. I’ve never even read about it. I’m researching now. Mine is still gone but just since Feb 10th. I have a close friend after Covid this happened and for her it’s almost two years. She has no thyroid issues. Keep trying.