Baffled over thyroid issues

[mrspeffer]

Morning everyone. I have PBC, not meds for this. I also had a total thyroidectomy in 2011. Was doing fine for years on NDT when all of a sudden my TSH dropped to .006 and will not budge despite medication reductions and a change to the dreaded synthetic brand. Right now my T4/T3 are at a low normal and TSH will not come up. I feel majorly hypo. I have had a brain MRI which showed everything to be fine. Next is a sleep study s the clueless MD's are groping for answers. I am firing this Endo and going to another. The only reason I stay in the medical complex web is due to being post papillary cancer. I eat clean, use some supplements, am on bio-identical hormones, and am also a medical marijuana patient due to major chronic pain from my scoliosis. I only take a very small amount of a THC capsule when needed for pain. Does anyone have a thought or clue as to what could have dropped my TSH so low??? Any and all thoughts will be greatly appreciated as I am truly not feeling well and starting to be worried .

[gwillistexas]

mrspeffer...sorry the thyroid is still acting up. 6 weeks ago mine was little below the low normal range. Dr didn’t change doseage & this time, somehow, my tsh pulled itself back in to normal range. Has never happened before. Hopefully in time, your new med will balance the tsh. I sure hope so. I know how it affects us. Take care😊🦋

[EileenUSA]

Hi,

I also had a thyroidectomy (in 2010) my TSH numbers stayed very consistent for 5 years I was on .100 mcg of synthroid.

UNTIL I started URSO. Ok..so maybe a coincidence? Or is the PBC disease process/inflammation somehow effecting my body's ability to use thyroid replacement? I dunno.. but what I do know is that past two years been a roller coaster with thyroid levels.

My TSH hit .025 two Months ago ( normal range at my lab is .040 - 4.00). 8 months ago it was 4.65.

Have gone to .112, then .125, then back to .112mcg. Ugh... also hard thing about adjusting meds is that everything I read and drs tell me, it takes 5-6 weeks to see if new dose is right.,

So can feel like crap in between changing doses waiting to see new labs.

I hope YOU get some answers.. being hypo can really effect quality of life.

Hugs.

[mrspeffer in reply to EileenUSA]

Thank you for sharing.your experience. Good to know I'm not unique. I'll get this figured out, hopefully. In the meantime I'll work on changing my droughts

[dollydaydreams]

My thyroid is up and down like a yo yo at the moment it is underactive but keeps going over active this has been going on for over 2 1/2 years at the moment i am off meds to see what happens next, I am totally fed up of it, I feel like crap as well.

[gwillistexas in reply to dollydaydreams]

dollydaydreams...I understand. Mine hardly stays in normal range. If it does, it’s just that we test it as it’s on it’s way to the other extreme. I’m usually hyper to hypo. Crazy.

[Shulsey]

Im hypo as well. Not sure if there is a connection or not but my thyroid numbers were a bit higher than usual so my family Dr, who also knows about PBC (because of me lol) increased my Synthroid from 25mg to 100mg. Of course she started just above the 25mg & we worked our way to the 100mg. My numbers were like a rollercoaster. Isn't hypothyroidism another autoimmune disease. I'm pretty sure it is so just like everything else I have. You get one autoimmune disease & a few more falls into place. Our immune systems are really really screwed up. Lucky us huh 🤔😒. But as I always say...

Stay Strong❣️

Shannon

Stage 4 PBC

[mrspeffer]

I want to thank each one of you for chiming in on this. Having no thyroid and a low TSH seems to be a common thread. Those of you who still have your thyroid have yet other issues to deal with too. This whole thing has to be related to our PBC and as Shulsey says, "our immune systems being really, really screwed up." yep, we are a special group. Throw in a little menopause and we really get to feel special. As I have said before, I need Dr. House and his diagnostic team! Having one doctor in one field narrowly view their lab findings does not appear to be helping. I pray that we all find some semblance of normal...until then, it feels good to know I can "vent" here. Hope everyone has a groovy day

[Hidden in reply to mrspeffer]

I'm with you looking for Dr House. Let me know if you find him! Tho' not sure if I want his junior doctors breaking in my house, taking up my drains etc to eliminate all possible explanations for my symptoms! So nice to laugh tho, thanks for that.

[Sachin1234]

I don’t think it is thc interfering your thyroid? Mine is just a opinion neither I use thc nor I have study any article regarding that matter..tho, thc can be hard for liver not cbd oil

[mrspeffer]

Thanks.. cbc oil doesn't seem to help with my pain as well as the, but it's worth looking at again

[Angelann69]

So I'm not the only one? My TSH shot up to 15 2 months ago. Started taking my levothroid 1st thing in the morning without food as my doc pointed out. Now it's down to .42. In my case I do believe that I just didn't take it correctly. It's too low for me now, I'm beginning to have anxiety and I really hate that. My doc has been lazy the last 2 tests and only checked the TSH. Phffft.....

[mrspeffer]

Who would have thought that how we take a drug would make such a difference. Glad to hear it's coming into range for you.

[EileenUSA in reply to mrspeffer]

Yes- levothyroxine is supposed to be taken 30 to 60 minutes before food.

I don't always make 60 minutes as I need to eat breakfast but I do make 30 minutes every day.

However, I will say this- I never had any major fluctuations in TSH levels for 5 years post- thyroidectomy. My dosage stayed the same for 5 years. It was ONLY after PBC dx and starting URSO that the roller coaster began.

How about the rest of you? We're your levels up and down before URSO and PBC? Just curious.

[mrspeffer]

Thanks for your thoughts...I am aware of the food and supplement time restrictions. I usually wait 3 hours for food and four hours for supplements. This whole super suppressed TSH is starting to look like a problem of my converting thyroid properly. Perhaps a dopamine deficiency. I am seeing a MD next week who is also a naturopathic doctor. He is the only one I have talked to that has discussed conversion problems.

I was diagnosed with PBC in 1997. In the mid 80's, I had a "cold node" on my thyroid and one gland was removed. I was not medicated with replacement therapy, but always felt not right and was always in the low normal ranges In 2011, thyroid cancer was discovered and my remaining gland and parathyroid were removed. Like I said, I was good for 6 years before my TSH took a plunge into too far suppressed. I do not use URSO...I'm unable to tolerate it. My bilirubin is good, I have no fatty liver or fibrosis as of yet. The not so wonderful part are my LF's. ALP is always rather high and the others are slightly elevated.

My CPR is way too high right now, but did come down about 3 points this year. I am a small woman, 5'3", usually around 120 lbs., eat clean, limit carbs, no alcohol, one cup of coffee daily (life is too short to not enjoy a good cup of joe!). Hopefully this new guy next week will put me back on Nature-throid and not be so concerned about the TSH as the AMA doctors seem to be...Be well