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Is it ok to take cytomel long term?

CherylMike
Posts: 118
Joined: Oct 2009

Hello~ I had a TT and I131 treatment a year ago. Had to go off synthroid in order to have the year out scan done. After it was finished, my doctor put me on cytomel (25 mg) and synthroid (125mg). After some time I felt really good (like I use to before I had a TT). My doctor refuses to refill the cytomel even though I told her I feel really good (I am not so tired anymore! It is wonderful). I have been on the cytomel for a couple of months. I believe others on this network have used the cytomel in conjuction with the synthroid? If so, could you please let me know. My doctor said that long term use would lead to heart problems and osteoperious. Thank you

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Cheryl,

The blog site below is very informative on the subject. I found it when I was considering this possible therapy. I got the idea when Nasher posted that he felt better on it. There is some debate over the topic of using T3 (Cytomel) due to the risks of heart problems and osteoporosis in later years but nothing that really confirms it. This blog talks about "quality of life" and how the combination is more similar to how our bodies naturally produce the two types of hormone. The question that caught my attention regarding the use of Cytomel or T3 therapy is, "If it weren't necessary at all, why would normal healthy thyroids make it in the first place?"

http://www.farscapeweekly.com/weblog/2005/09/on-combined-t4t3-therapy-or-feeling

I think you will find this good reading. There is also some suggested reading listed in the blog that you might want to get. I found the mathematical formula for determining the right amount of T3/T4 combination very interesting.

I have been considering the combination therapy for a few months now. My Endocrinologist has given me the option and I have been wavering. How much better do you feel on the combination therapy? What differences are there in how you felt. I often feel fatigued and have a great deal of muscle stress. I don't sleep well and have night terrors. I would love to hear your thoughts after you read the blog and what your experience has been on just T4 vs. T3/T4 combination therapy.

Blessings,
Julie-SunnyAZ

CherylMike
Posts: 118
Joined: Oct 2009

Hi Sunny~

I feel so much better on the combination of T3/T4. I have always been a very active (almost hyperactive) person. Since I had my TT, I have felt constantly tired. I have also been unable to multitask (one thing at a time and then I would be worn out-plus that is all my consentration would allow). I was resigned to this was my "new normal" and nothing could be done. Since taking the Cytomel, I feel so much like my old self. I can get up early and keep going all day (I still take a 30 minute power nap late afternoons). I am ready to go to bed at night (no insomnia). I just feel like my old self. I am very upset with my endo as she refuses to refill the Cytomel. She said it is medically unethical to do so, even though I feel better and have no heart palpitations and my bone density is good (had it checked less than a year ago). I am in the process of trying to find a new endo who will listen to me. I know that you are in south AZ (I am in the Phoenix area) but am wondering if the drive would be worth it to find an endo who would listen to their patient?

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Cheryl,
I know that my Endocrinologist said that I could have the combination therapy. He is retiring soon however. Then I will be seeing another Endo in the same office. All of the doctors in the group share the same type of mindset. If you are interested his name is Dr. Mitchell Parker and the name of the office is called Western Endocrine. I will be seeing Dr. Nora Barsony when Dr. Parker retires (sometime next year from what I have heard). The phone number is 520-886-5534. Maybe you could ask for a phone consult with Dr. Parker. I have never tried to get one but I do know that when I have test results Dr. Parker calls me personally. He doesn't have his MA call. He is kind of a quiet guy but direct and a straight shooter. Western Endocrine is one of 53 offices managed by the company I work for called Arizona Community Physicians. They are only in Tucson and surrounding communities. Maybe if there isn't someone in the Phoenix area willing to let you do combination therapy you can try to get a phone consultation with Dr. Parker or one of the associates at that office. They are all very good doctors. I think I am convinced now that I want to give it a try too. Thanks for the information.
Blessings,
Julie -SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

yep I am on a combination of cytomel and synthroid for long term I have been told it will be no problem taking this the rest of my life so it is safe

3boys_mom
Posts: 47
Joined: Jun 2011

From what I can tell, Cytomel has gotten a bad rap recently, but not because it doesn't work, but because it can be abused. It can be hard to dose correctly first of all. Just an increase of 5mcg can throw the system into palps and such until the body adjusts. And the abuse comes when when people take too much and it gives them an affect similiar to being on speed. Which can be quite tempting if you have been a lethargic hypo patient. I lost 12 lbs the first month I was on it, not doing anything. But, despite all that, I've said it before, and I'll say it again--Cytomel saved my life an my family relationships. I'm currently weaning off my antidepressant since I really think the Cytomel is helping that too.

Many drs. hesitate to prescribe it because they think people are wanting it kind of the same way adults were wanting their kids Ritalin.

Unless my dr can come up with a very valid reason why I can't take Cytomel, I wll be on it forever..

sunnyaz
Posts: 582
Joined: Oct 2010

Now I am even more convinced that I am going to try the combination. Thanks for all the input from everyone and thanks Cheryl for posting this question.
Blessings,
Julie-SunnyAZ

MarinMark
Posts: 139
Joined: Aug 2011

Unclear as to the reason for a combo. Synthroid or T4 will be converted to T3 as needed in the body, so l-thyroxine should be sufficient.

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

and in those cases many endos prescribe T3 in order to maintain proper TSH.

3boys_mom
Posts: 47
Joined: Jun 2011

not everybody converts the T4 into T3. And many doctors don't run the tests that need to be run in order to know that.

I think that many endocronologists are just now really begining to listen to the patients symptoms and not just the stupid lab work. I've been very fortunate in that my family doctor is my friend, and she has a sister with thyroid disease.

All I know is that my dh was more concerned about the idea that I may not be able to take cytomel anymore than if I had thyroid cancer. That's how much 20 little mcgs has changed my life. My children will tell you the same thing.

lookingforspring
Posts: 14
Joined: Oct 2011

I'm surprised your doctor would link osteoporosis and cytomel. The concern about osteoporosis comes from the higher dosage of replacement hormone we take with thyca (keeping us slightly hyper), not from cytomel. I am taking Synthroid only and my endo keeps a close watch on my bone density. Hopefully, your doc will be concerned about your bone density regardless of what hormone or combination of hormones you take. Insist on it.

iggymurphy
Posts: 34
Joined: Sep 2011

I had my TT in september and my RAI in early novemeber. I have been feeling terrible ever since my TT. I got very sick and went in to get my levels checked 6 weeks after the RAI and my TSH was at 25. Yikes! My endo just upped my synthroid (175mg) and added in 5 mg of cytomel (at my request). I told him cytomel made me feel great and he said "OK but we may have to wean you off of it when your TSH levels out". I really hope he doesn't take me off of the cytomel. For the first time in a few years I have energy (no insomnia) and just feel great. My endo also mentioned the heart problems and the osteo problems that may occure, but he seemed open to the combo therapy. He will be testing T3 and T4 every 6 weeks so I imagine that will guide him a bit. Keeping my fingers crossed I can stay energized!

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