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Avatar universal

Cytomel after (TT) surgery

I was curious if anyone knows why I was given Cytomel after my TT? This was back in early 2005, I had thyroid cancer and had 2 operations to remove the thyroid gland. The main reason I ask this is I am having a very difficult time right now and unable to see a Endo anytime soon. I just got the blood test records from 2005 to present and noticed only TSH and sometimes Free T4 tests done, Free T3 was never checked. I now know the T3 hormone is very important and a lack of this hormone can and will cause many problems.

While I was on Cytomel after the operation I didn't have any issues with energy or feeling tired, but once I was on Levothyroxine and stopped the Cytomel I felt horrible. Since I had some Cytomel left I did take it along with the Levo and felt better again. The ENT told me Cytomel was not for long term use and to only take Levo, my TSH at that time was very high at between 31.0-46.0

I believe Cytomel is a T3 only hormone and has a very short half life, but I'm unsure why this is given after surgery if your T4 and T3 will drop due to thyroid removal? I know Levo (T4) should convert to T3 in the body, but it takes 6-8 weeks to build up. It seems I had no T3 in my system (felt horrible) and was just waiting for the T4 to build up and hopefully convert to T3.

The Cytomel may not be a big deal, but another issues since TT has been a swollen or enlarged tongue. I had asked the ENT about this along with other ENT related problems and after a few tests, MRI and CAT scan, he had no idea what was wrong. I believe a swollen or enlarged tongue may be a symptom of hypothyroidism and since no Free T3 tests have ever been done, this may be the root cause.

I know I am trying to figure this out on my own, but this website and the people who respond to my questions have been so helpful, no doctor has ever answered my questions like this.

It's been 7 long years now since the TT and trying to figure out why I oftentimes feel "odd" and not myself. It could be as simple as not enough T3 hormone and a small dose of Cytomel everyday could be all I need. It may be that Levothyroxine is just not right for me, probably never was and another type of T4 med or Armour Thyroid may help. Curious if anyone has had the same problems, thanks for the help!!
18 Responses
649848 tn?1534637300
COMMUNITY LEADER
It's not customary to give only a T3 medication and your endo is right, T3 only medication is usually short term.  That said, there are  many of us who don't convert properly and need a small amount of T3, along with the usual T4 med.  The only way you can know this for sure, is to test both FT3 and FT4. If you have a conversion problem, typically, FT4 would be higher in its range, with FT3 low in it's range.

If your doctor refuses to test FT3, you can order a thyroid panel, which includes TSH, FT3 and FT4, online for approx $85.  One that some of us have used and had good luck with is health check usa.  You order, and pay for the test online, they e-mail you a lab order and tell you which local lab to go to  You go get the blood drawn and a couple days later, they will e-mail you the report, and follow up with a mailed hard copy.  Be aware that many/most insurances do not cover this testing, but it's done by reputable labs and the price is reasonable.

Once you have test results, showing whether or not you have a conversion issue, or maybe you simply need an increase in your T4 medication, you can take them to your endo and try to get him to listen; if he won't, you would probably need to start looking for another doctor.

Many doctors only treat to the point of being "in range", which is often not enough, because we're all different and many of us need higher levels to feel well.  Doctors like that will invariably keep you ill.
2192208 tn?1346529432
The only reason docs will prescribe cytomel is if there is a conversion problem...if your labs do not show that you are hypo (even if you have symptoms), they will not prescibe it (most docs). I've had hypo symptoms since my surgery in dec 09, amongst a whole bunch of other issues and i cannot find a doc who will prescribe it (and i live in ny). My tsh level is always in range (whether low end or high end) and i have to demand that they test for Free T3 because they will not otherwise.
1139187 tn?1355710247
Hey I get to disagree with y'all  LOL


I had my thyroid out and i almost got the cytomel after until they found out i was already on something.  It was prescribed to me but never taken.  The idea behind this is that once the thyroid is out it will be a while til the levels build back up - cytomel is a quick fixer upper.  I was told this was given to keep the levels up until the t4 therapy kicks in which could be a while.

It took me about 30 days until i felt the full effects of the losing the thyroid so I'm not sure why they would immediately give t3 the next day after.  But they were.
649848 tn?1534637300
COMMUNITY LEADER
I read it that she was prescribed T3 only, so there was nothing to build up; however, if she was prescribed "both" T3 and the levo, I'd have to agree with you.  Dang!!   LOL
Avatar universal
Hi, not sure if you are referring to my original post, but I am a "he" not a "she" LOL. But my main thought was, why prescribe Cytomel (T3) after surgery and not Levo.. I realize the thyroid hormone level will decrease after TT and you need something, but they never checked my F-T3 or F-T4, only TSH. I was told to stop the Cytomel and start Levo, I assume I felt horrible because of the T3 levels dropped very quickly, no Cytomel and they were just waiting for the Levo (T4) to build up.

My Levo dose was very low (75 mcg) and my TSH was 46.0 after 8 weeks, this was after I stopped taking Cytomel with the low dose of Levo. So 8 weeks of feeling bad. Now a increase in Levo (125mcg) and another 8 weeks of feeling bad to see my TSH at 31.0 Doctor asked if I was taking it every morning and of course I was. Another increase of Levo (200mcg) and that did make a difference as my TSH went down, but it took another 4-6 weeks or so.

I do not understand why you would have a patient go through all that, 16-20 weeks of "testing" the effects of Levo in that person without checking  F-T3 or F-T4 or treating the symptoms with a small dose of Cytomel, which would have helped a great deal.

I didn't know what F-T4 or F-T3 was until recently, but now that I do, it all makes sense now. What doesn't make sense is to only check TSH and not how your body is using the Levo and check the other hormone levels.

I can't do much about the care I was given years ago, but the more I know now will help me in the future.

Thanks again for all the help!!
649848 tn?1534637300
COMMUNITY LEADER
I'm very sorry about mistaking your gender......  I almost always check profiles to make sure I have that right and could have sworn yours said "female"; guess I really botched it, huh?  We can be friends, anyway and start over, because my suggestions wouldn't change?  

I'm sure they prescribed the T3 only, after surgery, in order to keep your levels up....... BUT -- now that I've made one error, I need to go back and clarify....who prescribed the T3 only, and is that the same doctor who told you to stop the T3 and take levo only?

Unfortunately, getting the dosage right is a real lesson for acquiring patience, because you have to take the med, let it reach potential, then test, then increase...... it can be an agonizing process.

I'm going between your 2 threads now, so we can combine them into this one.

Your original post says you have appointments with 2 endo, but not till Aug.  That's a long time to wait.  Did you ask them if they have a "cancellation" list?  Many times, you can put your name on a cancellation list and if someone cancels, you can get in much sooner. You might want to ask both.

If you can do the FT3/FT4 tests prior to the appointments, you will be able to get a med change on the first visit, if it's warranted.

Whenever you get FT3/FT4 tests, please post the results and reference ranges, so we can see where you're at and offer suggestions.  We aren't doctors, but we often do better than they do............lol


Avatar universal
Hi, I realize more women have thyroid problems than men, at least the info online says that, but I think the tips and advice will help everyone. The ENT who did the TT prescribed the Cytomel. I have the lab results from that time period.
Pre-TT
2-05 TSH 1.50, no meds.
3-05 TSH 1.79, no meds. 1st operation
5-05 TSH 2.62, Free T4 1.31 no meds. 2nd operation
Post TT, Cytomel only
6-06 TSH 0.05, Free T4 0.4  
7-9-05 TSH 0.37, Free T4 0.4 Started 75mcg Levo, no cytomel
7-20-05 TSH 43.34, Free T4 0.98
Levo increased to 125mcg around 9-05
11-8-05 TSH 31.48
12-23-05 TSH 2.52, Increase Levo to 200mcg to lower TSH more.
5-26-06 TSH 0.10
11-09 TSH 0.03 Free T4 1.44
5-10 TSH 0.02 Free T4 1.27
7-10 TSH 0.04 Free T4 1.45
10-10 TSH 0.04 Free T4 1.32
7-11 TSH 0.98 Free T4 1.12 Stopped Prozac, felt horrible!!
Oct-Nov felt horrible lost 30lbs couldn't do anything, no energy
12-11 TSH 0.244
The first of Feb 2012 I started taking 1/2 pill of the 200mcg Levo, 3rd week of March I started to feel better, much better. Gained weight and had energy.
3rd week of April stopped all Levo, (bad idea) middle of May started to feel bad, TSH at 177.300
Started Levo again at 200mcg, now it's the 2nd week of June and feeling a little better again.
I have been told Prozac doesn't interfer with thyroid medications, the withdrawl is approx 6 weeks after ending Prozac, I was on a small dose 20mg.
In my case I do feel Prozac, SSRI did interact with the thyroid medication. I have had a horrible reaction to whatever was going on chemical wise. It may be I can not be so "Hyper" with a TSH below 0.10 as the doctors wanted me to be at.
I was at 0.98-0.24 TSH from July to Dec 2011 and had extreme Hypo and Hyper symptoms, no energy (hypo) and losing weight (hyper)

I know the thyroid hormone levels may show everything is OK, but on Prozac and TSH at 31.34 I felt worse than I did with no prozac and TSH at 177.30
The doctors apparently have no idea what happens when you are taking both anti-depressants and thyroid hormones, I know T3 interacts with serrotonin and SSRI's increase serrotonin levels in the brain.

From my own personal experience the side effects of Prozac and Levothyroxine together are horrible. I was never advised to stop or asked if I am experiencing any adverse effects.

My big mistake was assuming the adverse effects I was feeling was from being so "hyper" low TSH. But now that I know the Levo dose will make a difference, I have a better idea which direction to go now.

The Endo doctors will call if there is a cancellation, and I now have PCIP medical insurance. I will try to find a Endo who can see me sooner and who will prescribe natural and T3 meds.

I know this message is long, but maybe it will help someone else who is or was taking anti-depressants and thyroid hormones or just have similar problems as I do.
Thanks again "Barb135" I do appreciate the help and advice!!
Richard
Avatar universal
You've been given lots of good info previously.  I only want to supplement that with some info that by giving your doctor a copy, might help get him to open his mind and do the testing you need.  The following link is to a scientific study that concluded that Free T3 correlated best with a composite score of 8 typical hypo symptoms, as rated subjectively by the patients themselves.  Free T4 and TSH did not correlate at all.  This is pretty conclusive evidence for you doctor that it is very important to know the level of Free T3.

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

The other thing I want to emphasize is that a good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he consults with, in conjunction with their PCP.  The letter is then sent to the PCP to help guide treatment.    I should also point out that the doctor will use all types of thyroid med,  but he frequently uses the NDT type, because many of his patients have continuing hypo symptoms due to not adequately converting their T4 med to T3.  

http://hormonerestoration.com/files/ThyroidPMD.pdf

In the letter, note the statement, "the ultimate criterion for dose adjustment must always be the clinical response of the patient."

Where are you located in California?  Perhaps a member could make a recommendation for a good thyroid doctor.

649848 tn?1534637300
COMMUNITY LEADER
I'm happy to see that you're a forgiving soul...... :-)   You're right, there are more women, than men, who have thyroid issues - so they say, but I'm beginning to wonder about that.  No, I don't "wonder" too far, I might get lost!!

Reading back over this thread, I'm curious (well, some might call it being nosy) why you had 2 surgeries, only a couple months apart. Why did they not  take the entire thyroid in one surgery?  

"It may be I can not be so "Hyper" with a TSH below 0.10 as the doctors wanted me to be at."

Low TSH does not cause you to be hyper.  TSH causes no symptoms; it's the levels of Free T3 and Free T4 that are important (too high, you're hyper; too low, you're hypo), with FT3 being most important, because, as gimel said "it correlates best with symptoms".

My TSH has lived at < 0.01, every since I've been on thyroid medication (4+ years) and I have yet to go hyper.  You don't give ranges for your FT4 results, but, judging from ranges we often see, none of them indicate that you were really hyper.

Some medications do react with each other, and while we expect our doctors to know this, unfortunately, they don't always.  Whenever possible, you should separate other meds from your thyroid med by, at least an hour or two, more if there's a known interaction.  Did you know that with properly adjusted thyroid levels, a lot of people can get off anti-depressants?

"I will try to find a (sic) Endo who can see me sooner and who will prescribe natural and T3 meds."   You need first to  make sure they will run the FT3 test, before even considering a med with a T3 component.  Any doctor who will prescribe a T3 med without monitoring FT3 levels is being irresponsible.  
Avatar universal
Hello and thanks for the reply, I live in Los Angeles, near the Pasadena area. I found a Endo who will see me next month and he can prescribe natural thyroid and T3 meds if needed. I will do more research with the information you gave me. I would hope that any Endocrinologist I see is up to date on the latest methods and medications that a thyroid patient may need, but I seriously doubt that's what I will find. Thanks again!!
Avatar universal
It is not so much as their being up on the latest methods and medications as it is that largely they have been trained with the "Immaculate TSH Belief" and use "Reference Range Endocrinology" and those approaches leave many patients still suffering with hypo symptoms.  

You might save yourself some time and money by calling the Endo's office and asking if you could ask a nurse two questions before seeing the Doctor.  Then ask if the doctor is willing to test for Free T3 and Free T4.  Also ask if the doctor is willing to treat clinically by adjusting Free T3 and free T4 as necessary to relieve symptoms.  If either answer is no, then you are not likely to be successful with that Endo.
Avatar universal
Hello again, there was no reason why the thyroid was taken out in 2 operations, I believe that's the way it was done at the turn of the century when doctors didn't know any better. The ENT in my opinion was horrible, but that's who they sent me to. I didn't know any better myself and what made it even worse was I had cervical spinal fusion a few month before, C-5, C-6, C-7. So after all was said and done, it looked like I had my throat slashed.

The reason I stated I was "hyper" was only due to the very low TSH, that's all I have to go by and all my test results show "abnormal" low TSH. My symptoms were, always felt hot, excessive sweating. Trembling hands, difficult falling asleep without sleeping meds, I felt "hyper" as having too much engery and could not slow down to concentrate on anything. Quick to anger and always on edge, plus many more. But you get the idea.

Most if not all of this was caused by Prozac, as these symptoms have all gone away now. I just assumed it was from the Levo and being at a low TSH reading. What do I know? lol

As all of this has been happening I've had to experiment with my meds and daily habits in a attempt to locate the root cause and adjust it. Stopping Prozac and changing the dose of Levo has made the most difference and I am returning to normal, feeling things I haven't felt in 15 years. I couldn't smell much of anything for over 12 years now and just assumed it was from my work. I was a mechanic for 25 years working with harsh chemicals, I retired (disability) in 2002, so I thought that was the reason.

Doctors who examined me couldn't help, had no idea what was wrong, I was losing my hearing and had vision problems. That's what led me to the ENT who noticed the enlarged thyroid in 2005.

After my TT and now on hormones, more symptoms began, as I'm sure happens to most people and I had to adjust to them also. I had so much going on, I didn't know what was causing what.

7 years later, I realize it's not normal to always be hot, have a fan on me or the AC going all the time. I can fall asleep like a normal person again, I can smell and taste my food, which is nice, my hearing and vision are returning to normal, no glasses anymore.

Again I assumed most of this was caused by age and the Levo, but it's not.

The doctor who will see me does prescibed natural thyroid hormone and T3 meds. This was important as it made no sense to see a doctor who only relies on T4 medications. I will make sure the doctor does test my F-T3, F-T4 & TSH and more and insist they treat my symptoms. If not, I will look elsewhere.

By the way, I was taking Prozac and Levo in the morning, as prescribed. Plus sleeping meds at night, all my doctors knew about this and never warned me of any problems. Prozac and sleep meds are now gone, I don't need them and I do feel better without them.

I am getting better and hopefully will really feel normal again, I hope!
Avatar universal
Hello, I have been asking if they prescribe natural thyroid and T3 meds, my thought is if they don't, I have no reason to see them. I have asked to speak to the nurse, but was told I could not. I only have so many Endocrinologists near me to pick from and most do not use natural thyroid hormones or T3 meds. Just got my insurance and have been looking for a new doctor, I may have found one and have a appointment for July. I will ask the doctor how he treats his patients and if it's just by TSH and not by symptoms, I will keep looking. Thanks for the advice!!
Avatar universal
As luck would have it, I don't have a member recommended doctor in your area, but just recently I spent some time searching for a good thyroid doctor for another member in your general area.  I went through a long list of Endos and all the information I could find about them and quickly eliminated most.  Then I called the offices of the ones that I had thought might be prospects and asked pertinent questions.  I ended up with only one real prospect, located in Beverly Hills.  I'm sending the info by PM.  Please let us know what you think.
Avatar universal
Hello and thanks so much for the information on Dr Lerner. I have called and made a appointment, early July and after speaking to them I think I am on the right track. The doctor will do a complete physical, ask questions and do blood work looking for many things thyroid related I haven't even heard of. He does use natural thyroid and T3 meds if needed. I think if anyone can help this may be the doctor.

I must say this website and all those who helped have been a lifesaver. After my TT and on Levo nothing seemed the same, but I never really knew why. Thanks to everyone here, I now have hope and a better understanding of what is going on in my body and how to get back to normal. Thanks again for all the help!!
649848 tn?1534637300
COMMUNITY LEADER
Congratulations on finding a new doctor.  I wish you the very best of luck. Be sure to keep us posted on your progress, and for sure let us know how that doctor works out.
Avatar universal
Hello again, I was able to see Dr. Lerner on July 2nd, the visit was OK. I had some problems when I arrived, as the office was closed and no one answered the phone. The staff went to lunch and locked themselves out. The doctor spent over a hour with me and really seem to care, he listened to what I had to say and then told me his thoughts about all the "info" I had received online here. He feels there is NO need to check free T3 and he relies on TSH and free T4 only. He only prescribes T3 meds in extreme cases, those who "demand" it "mostly women" (his words) and due to me having thyroid cancer in the past wants the TSH @ .1-.2

He states T4 will convert to T3 naturally in the body and there is no need to add more T3. He doesn't like Amour Thyroid as it is not a precise amount of a known compound. As I mentioned my symptoms he felt they were not related to thyroid issues or hormones.

Sadly, I was not all that impressed as I told him the last year of my life has been a living hell. He wants the TSH very low so as not to stimulate any remaining thyroid tissue cells and doesn't feel most people will experience any "Hyper" symptoms as a result.

This wasn't what I was expecting as his rating online is excellent and having 50 years experience. I will get the blood test results later this week and go from there.

I know from my own experience I was not the same after my TT and daily Levothyroxine meds, but I am unsure how to get back to normal. I do not see how one can dismiss Free T3 levels as they do most of the work in your body. As a retired auto mechanic I think of things in a mechanical sense, so if a person says their car isn't running right and all I do is check the fuel level (TSH) and it's within range, that doesn't do much towards repairing the vehicle. Your car can run bad with a full tank of gas as I can feel bad with "within range" TSH" & Free T4

I may keep some appointments I have made with other Endocrinologists and hopefully find more answers. Thanks again for all your help here at Medhelp!!
649848 tn?1534637300
COMMUNITY LEADER
You are so right: "As a retired auto mechanic I think of things in a mechanical sense, so if a person says their car isn't running right and all I do is check the fuel level (TSH) and it's within range, that doesn't do much towards repairing the vehicle. Your car can run bad with a full tank of gas as I can feel bad with "within range" TSH" & Free T4".  

As a retired water treatment facility operator, I think the same things.  Your water might meet the current regulations, but if it tastes or looks bad, it's probably bad.  

Any doctor that looks only at TSH and FT4 are not going to help you get well.

I'd suggest keeping some of those other appointments, but in order to narrow the field and save some time and money, you might call ahead and try to talk to someone (usually a nurse) who would know how the doctor typically treats thyroid patients.  Questions to ask:

1)  Does the doctor test Free T3 and Free T4, along with TSH, every time?

2) Does the doctor pay as much attention to the FT3 and FT4 as the TSH? And will s/he prescribe meds even if the results are low in the ranges?

3) Does the doctor treat by symptoms, as much, or more than labs?

4) Is the doctor willing to treat with both T3 and T4 meds, including desiccated or compounded combos.  

If the answer to any of these questions is no, you might as well keep looking.

Don't give up and don't forget where we are.

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649848 tn?1534637300
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