Always get your reverse T3 checked to at least eliminate the possibility of having this problem. Also, many people do much better T3 or a T3/T4 combo.
Ask your Md what time he like you to take your replacement.I take my hormone replacement at bedtime with about 60cc of water.
I have been retesting for a long time about every 6 weeks.My tsh has been fluctuating alot
Key to hypothyroidism is to suppress the TSH . Many of us have mal absorption woes.Discuss with your Md where he like your TSH to be at.
Do you take other medication which can effect your Tsh
I've never been told I could take my thyroid medication at night so I am going to ask about doing that. I finally asked my Internist to refer me to an endocrinologist a few months ago. As I posted before, I had a problem after my surgeries 4.5 years ago. I'm having it again. My doctor has been retesting me every six weeks and increasing the strength each time. It took me a long time to get an endocrinologist's appt. I'm glad I brought my current prescription bottle with me. The doctor insisted I was on .150 as that was what the records she'd received from my internist said. I pulled out the bottle. I knew what I was taking and she was ticking me off. She stared at the bottle, looked at my paperwork and shook her head. The reason it took me so long to get into see her is because she wanted me to be on the .150 dose for 3 months before new testing. This did not get communicated to my doctor or or nurse, if communicated at all. So we had a failure to communicate. Now her attitude was better. Sorry for dragging this along. Hopefully you might benefit from this story.
She said getting tested every 6 weeks is too soon. She now feared I was on too strong of a dose. She wrote a lab order for the last 2 weeks in July. I think I should have gone to her sooner. I have taken every strength of Levothyroxine from .77 ( or 88?) to .175 over the last 4.5 years.
When I was at Mayo's in Feb. the rest results were 19.8 with the normal range being .3 - 4.2. I was tested there May of 2012 at .03. Both results are bad and my GI is the one that stresses the importance of having it under control. I emailed my doctor from Mayo's, in Rochester, and asked where she wanted me to get it retested. Her nurse called and said that she, the internist, wanted to see me in her office the next day. She said if the ready was really 19.8 I would be in the hospital. The next test came back at almost 12. She was testing me every 6 weeks and increasing the dose from 112 to the latest 175.
My last 2 PCPs prior to my current one, tested at 6-8 weeks as well.
Because the new doctor instructed me to take the pill at the same time each day and not eat or take other medications for 2 hours I'm setting my alarm in order to take the tiny pill at the same time daily. My current PCP had instructed me to wait 1 hour and the prior ones didn't tell me anything - but it rarely changed.
I bought an alarm pill box. It holds 7 days with 4 different partitions per day. I've been using the same storage solution for years but ran across this alarmed version at Walgreens. It isn't working. I am sleeping through the alarms. So I am now setting my cell phone on the most obnoxious ring tone - "Rooster".
I'm going to be back at Mayo's the end of July for another pouchoscopy and am taking her lab order with me. My j-pouch has almost become a full-time job. I need a vacation from my body or a new body.
Thanks for all of your replies. I am looking forward to getting it over with. My parents are driving up from Florida and they will be with me Tuesday when I have the surgery.
I hope you get to keep the other side of it and hopefully avoid radiation. That can be some nasty stuff - kind of like prednisone. You need to take it but don't want the side effects! It will be nice to see your folks too.
My endocrinologist seems to think that if the hemithyroidectomy is done and most of the left lobe is left in, it's "50-50" as to whether I will need synthroid, and I will know based on how I feel within two weeks of surgery.
For the hypothyroid folks, what symptoms will indicate that my remaining thyroid lobe is not getting the job done on producing enough thyroid hormone?
By the way, my presurgery blood labs showed my thyroid hormone function is "completely mid-normal" according to my endocrinologist. I guess that cancerous nodule isn't impacting on the hormone production.
Although the game plan going into surgery was a partial or hemithyroidectomy, we unfortunately had to go to plan B. When they opened me up they examined an adjacent lymph node to my thyroid which had showed as "low suspicion" on ultrasound. They cut 6 mm, examined in lab and found the thyroid cancer in it. The lymph node was removed. This also led to the entire thyroid, (left lobe, right lobe and isthmus) also being removed. The total time of the surgery was 4 hours and 15 minutes. As a result of the finding of a spread (albeit a minimal one) of the thyroid cancer, I will be having radioactive isotope therapy in 6 weeks which my surgeon is very confident will irradiate remaining cancer (if any). He said my survival rate is not much different than if they had just taken out the 1.1 cm tumor in the thyroid itself. This treatment will consist of taking me off synthroid for a week, starving my body on an iodine free diet, and then administering radioactive iodine. Any remaining thyroid cancer cells will be starved of iodine, will suck up the radiation and be killed (or so we hope).
After surgery, I felt very minimal pain which was completely extinguished with dilaudid. No nausea at all. Nothing other than feeling sedated and relaxed. I had 2 percocets at bedtime last night and nothing since, so my mind is clear as I write this. They woke me up 3 times last night to check my calcium by pricking me in the hand and taking blood to check my calcium levels. They all came back good.
I was discharged this morning from the hospital. I was very surprised by the lack of pain and I feel none at all right now. I have 2 drains in my neck and a big dressing which my surgeon will remove tomorrow. When they changed the dressings this morning they said my neck looked good.
I have been started on a synthetic thyroid hormone called Synthroid, effective immediately, because I have nothing in my body producing producing thyroid hormone and it's necessary to regulate one's metabolism. My dosage is 137 mcg which my ace endocrinologist told me is based on my body weight and not my blood TSH labs which, despite my cancer, were completely normal. I will have to take synthroid for the rest of my life. Interestingly ace endocrinologist overruled the hospital which had given me a scrip for 25 mcg of T3 which my endocrinologist told me is a 7-8 year old protocol that has been abandoned in modern endocrinology.
My restrictions right now are no driving for 3 days (they don't want me moving my neck left and right), no lifting, and I have to keep my head elevated tonight due to the drains. So will probably take pain meds tonight just to get to sleep on 3 pillows which surely will not be easy when I have trouble sleeping on one.
My Dad is in town and driving me to the pharmacy and doctor's appointments, of which I have two tomorrow and then one next week.
I feel very comfortable, and I feel I am getting tremendous medical care by both surgeon and endocrinologist who work together as a team even though they are In different practice groups in the same town. I am going to have to take synthroid the rest of my life and hopefully the dosage will be correct to maintain my energy levels but other than that my chance for a complete recovery is very high and according to My surgeon is close to the 98% national average.
Let me know if you have any questions and thank you all for your support.
Good luck for an easy recovery, CT. Perhaps a recliner (if you have one) might give you more reliable elevation than pillows.
Sounds good, even if not the plan you hoped for. Good luck, and take it easy!
Wishing you a speedy recovery/
On the positive side, it has been my experience that Synthroid works quite well for those of us without a colon. Over the years.....quite a few years......my dosage of Synthroid has changed. My doc checks my levels every 6 months unless he changes the dosage.....then three months after he has changed the dosage of Synthroid. As I get older I seem to need less Synthroid. They like to keep the Synthroid dosage on the low side because there is less chance of bone loss......I guess too much thyroid hormone encourages bone loss and I already have osteopenia. I just take what they tell me to take! Fortunately, it is a reasonably priced medication and easy to tolerate....for me, anyway! Oh, I've been on other forms of thyroid hormone but my endocrinologist finally suggested Synthroid even though it is a brand name and a bit more expensive. I do what she says. So, even if you have some fluctuations in dosage don't be concerned. Our needs seem to change as our bodies change......we lose or gain weight, for instance. Oh, FYI, my thyroid gland was treated with radioactive iodine in 1978 because it was hyperactive. Best wishes!
I'm glad they think they got it all with good margins. Unlike CeeeeCeee my thyroid has been bonkers since my surgeries 4.5 years ago. Some of it was due to the rapid weight loss I experienced. I printed off a graph of my weight for the last 9 years of office visits and took it to the endocrinologist. I marked important events, like the surgeries. She was glad I did so. In other words your right, weight is a big part of it. (The doctors didn't know graphs could be produced from their on-line patent records program. The accountant never wastes an opportunity to create a graph.) So there is a reason they weigh us at every appointment. It sounds like your weight has been steady so hopefully the dose is correct. You will know it when your metabolism declines, unless you have other health problems that include chronic fatigue.
If your insurance company forces generic synthroid on you please have your doctor specify that you need the name brand. I found out the efficacy can vary 5% either way and was 10% until recently. If generic is ok please watch out for changing of producers as well.
Great catch by your GP!
The insurance company can't force a generic drug, though they can pay little or nothing for the brand name on some policies.
My insurance company forces additional documentation for some prescriptions that they determine for whatever reasons. For example Cymbalta and several other medications I have taken over the years. Also right after my first j-pouch surgery my insurance company sent me a letter stating they would no longer cover Asacol as of January 1 the next year. If an insurance company makes you pay for it all, it isn't covered.
CT, glad you are at home resting. Don't stress, your levels should straighten out. I assume they saved your parathyroids, thus the calcium checks -- and those little buggers will keep on working. Try to have patience while the synthroid is adjusted. The isotope therapy works really well, and you should be good as new in no time. (Assuming the most common type of thyroid CA.) One day at a time -- you will have to let us know if your preoperative prediction of being down for 3 days before you are back at the grind comes to fruition.
I appreciate your reply. I can see now another reason why my thyroid levels are all over the place. I have had many problems with my j-pouch and it has been particularly erratic of late as my pouchitis has progressed. It's not under control with antibiotics, soft diet and all. No wonder it was so high in February when I was at Mayo getting a balloon dilation of the efferent limb. The contrast x-ray also revealed that my entire pouch was inflamed. It tested at 19.8 and 3 days later back home at almost 12, an 8 point difference in 3 days. I trust Mayo's lab. It's a see saw. My GI says I need to get my thyroid under control and that will improve my pouch problems. It looks like my pouch is affecting my thyroid function.
Thanks for letting me post about my problems CTB. I'm very ill and scared.
My endocrinologist told me the pathology on all my labs hasn't come back yet and he wants to see those before making any adjustments in the synthroid and the isotope treatment regimen which will be coming in around 6 weeks.
The parathyroids are not removed (at least not intentionally), even with a total thyroidectomy. They are separate glands. But, they can be traumatized during the dissection, so that is why they need to monitor your calcium levels (important for nerve conduction, muscle function and heart function).
Yes. Much more difficult to live without parathyroids than the thyroid!
Finally a plus to having to get up each night about 2:30 a.m. to empty my J-pouch.......I take my Synthroid medication at that time!
2 Am guess we all have about the same time
So I am going to have to get up early to take synthroid so I can eat breakfast at my normal time? If I eat breakfast at 7 am I need to be up at 5 am to take the synthroid?
Doesn't have to be two hours before you eat just on an empty stomach. So if your stomach is empty at midnight take it then.
2 hours before any other medications or food, per my new endocrinologist. Plus she said to take it at the same time daily. I think the 2 am suggested times are great ideas I have to take my PPI and wait a while before eating so I have a 3 hour before food issue. I have an alarm pillbox but sleep through the alarms. I have it set for the thyroid med, then GERD and the at 4 hours after the thyroid time to take vitamins and a 4th time for my mid afternoon medications.
I sleep through the alarms so now have my cell phone alarms going off too. I am a professional sick person and hate it!
Doesn't have to be two hours before you eat just on an empty stomach. So if your stomach is empty at midnight take it then.
It looks like someone tried to slash your throat! It will heal nicely and was probably just longer because they needed to insure they got it all out. It's just a little bit longer than what happened to a lady I know who had goiter surgery.