For me I couldn't tolerate the synthroid very well. It was brand name only of course but it didn't matter. It made me jittery anxious and sleepy at the same time. I tried compounded and then switched to armour thyroid. Most endocrinologists don't like armour but it is the only thing that works. I put on weight during the synthroid trials which was an unpleasant side effect. Since I had autoimmune thyroid issues ( antibodies) armour seems to be a good choice.

Nora

 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

Cassiecass

cassiecass,

 

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. 

 

 

I had a long conversation tonight with my surgeon and we have worked out an elaborate but sensible surgical game plan for my surgery which is Tuesday, July 14.  Instead of a complete thyroidectomy, the pre-surgical game plan will be a hemithyroidectomy, in which the right thyroid lobe and isthmus (where the cancerous nodule is) will be removed, but most of the left thyroid lobe will be left in me (he will remove only about 1 cm left of the tumor).   This game plan will change if suspicious lymph nodes are identified, removed, and found to be cancerous (which cancer detection my surgeon told me can be done in 20 minutes in the lab while I remain under anesthesia).  If the latter is found, I will consent in advance to a complete thyroidectomy.
 
If no other suspicious tissue is located and the left thyroid lobe is left inside me, due to the small size of my tumor, radiation will not be indicated per ATA guidelines, but I will have lifetime monitoring of the left thyroid lobe, consisting of annual ultrasounds and biopsies of anything that looks suspicious.  The pros of doing this procedure is less risk to the laryngeal nerve and my vocal chords, and by leaving that left thyroid lobe in, my body will likely produce enough thyroid hormone to be sufficient.  I also will not be as at risk for low calcium.  The only real con is that the left thyroid will need to be watched the rest of my life.
 
IF suspicious lymph nodes are identified and removed and determined to be cancerous, the entire thyroid will then be removed, and I will also need radiation.
 
My surgeon agreed to arrange the necessary informed consent paperwork to be prepared for my signature tomorrow and I will be consenting to the above game plan so that we do not need to delay sedating my body when I get to the hospital on Tuesday.  Which will likely be a good idea for both me and the hospital staff.
 
If all goes well I will still have a little less than half a thyroid left when the smoke clears on this, which may produce enough hormone for me to get by and have the energy needed to do what I do.  At most I might need a little booster- I am going to speak further to the endocrinologist about this because the surgeon doesn't think i will need any synthroid at all with the hemithyroidectomy.

 

 

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.

I wanted to post on what happened with my surgery yesterday.  I am at home resting comfortably and have not taken any pain meds since last night. This post also has relevance to an ongoing issue in this thread which is T3 and T4 synthetic hormone levels.

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.

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! 

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. 

Armour Thyroid is not covered by my insurance  and neither is the compounded t4 I used to take so I had to pay cash. Worth every penny I can't tolerate synthroid! I do know that my weight and pouch flares require constant dose monitoring and altering. Sometimes I don't absorb it well and levels fluctuate. A good endocrinologist checks labs frequently so I am lucky.it is another thing to be vigilant about.

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.    

katenet,

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 copay on my synthroid 137 mcg is $33.00 so I don't think it's the generic stuff!!! It's a small blue pill. I took it at 5:30 am this morning two hours before food and other meds as suggested by TE Marie. I slept great last night using percocets and my head elevated on two big pillows. The dressing on my neck and the two drains come out this morning. Thanks for all the posts especially on synthroid and all the other info and suggestions. You guys are the best!!!
Thumprhare, my understanding is I had a complete thyroidectomy which means the parathyroids came out and there is no thyroid tissue left, unless there are some cancerous thyroid cells still floating around in my lymph nodes which will hopefully get zapped when I take the radioactive isotope.

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). 

 

Jan

Thanks for that explanation Jan. they were waking me up every two hours to draw blood to check calcium levels and giving me 500 mg tums tablets. I looked at a pic of the parathyroids and I thought they were part of the thyroid, but glad to know they left them in there.
Afternoon  CT
I do highly recommend you going to the thyroid cancer web site. I know in the Tri state area there are local group meetings.
 
In the next few weeks you will be more tired than before ,you will experience changes in the jpouch function along with nails,hair skin
As you suppress the Tsh you may notice voiding more or more Bms thru Jpouch.
Since  the j pouch 4 years ago I have had major woes withe TSH.
You should ask your Md where he wants the tsh to be about .I can no longer suppress mine to low numbers due to a MI ( heart Attack)
foods such as walnuts  can alter the tsh along with peaches, cauliflower .If you do eat them just note at least 4 hours from hormone replacement .I think you can find a full list of foods at www.allthyroid.org
Note medication can alter the Tsh also like probiotics  all stomach meds  , calcium, iron just again note they must be taken 4 to 6 hours from hormone replacement.
Be good to yourself  rest as much as you can/
It will take time to feel good again/
I hope some of this helped you.
 
The pill we take today has no effect on the body .It takes time to build in our bodies
Rest up
Cassie

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!  

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