Update on Cytomel regime

20th November 2008

posted in Health, Nutrition & Fitness, Personal |

During my week-long September series on hypothroidism, I mentioned that I had just been prescribed Cytomel and promised to update interested readers after a few weeks on how its working for me. After a week of phone calls between me and the office, my endocrinologist somewhat reluctantly prescribed a very low 12.5mcg daily dosage of Cytomel and halved my 125mcg daily Synthroid dosage (T4 converts into T3, but for some people that conversion may be impaired, hence the need for T3 treatment). Dosages vary by one’s thyroid levels, so there is no standard Cytomel dosage, per se, but based on the many comments I’ve read on Cytomel on thyroid-related messageboards, most new Cytomel users seem to be prescribed at least 25mcg a day starting out.

To reiterate, I specifically requested Cytomel because it works on T3 and Synthroid only works on T4. Most doctors rely solely on T4 treatment, even though its use is not scientifically-based, and most feel treatment is adequate if TSH levels read normal, even as the patient continues to complain about persistent symptoms. Cytomel works on T3 and unlike T4-only treatment, there is strong clinical evidence supporting its use. Although I’d been on Synthroid for years, I still experienced many classic symptoms of hypothyroidism that I hoped Cytomel would help alleviate. Here’s my two-month report:

Muscle aches and pains? Gone.
Carpal tunnel syndrome? Adios. I haven’t had to wear an arm brace since September.
Easy bruising? Not completely gone, but much better. My legs and arms now no longer resemble that of a domestic violence victim.
Dry skin and nails? Hard to tell, since colder temps usually exacerbate dry skin for me. My nails do look much better, though.
Fatigue and sleep problems? Also hard to tell, since my doctor upped my Adderall (amphetamine) dosage about the same time.
Mood and depression: About the same.
Weight? Also about the same. I haven’t gained additional weight but nor have I lost any.

Even though I’m on a low dosage of Cytomel, it’s definitely helping and its not just a placebo effect. If for nothing other than the fact that I no longer have painful knee and hip pains nearly every night the Cytomel is completely worth it. At my follow-up appointment last month, I explained the improvements and shortcomings to my doctor and asked her to increase the dosage. Again, she was very reluctant to do so even though the medication is obviously having a positive effect for me. I explained her refusal to my psychiatrist at our thrice-monthly appointment the other week and she had this sage advice for me, “Get a second opinion.” Even she said that Cytomel is often used in the psychiatry field because of its proven effects on mood, and she agreed with me that an increased dosage would be appropriate. So, for that reason, along with the fact that I often find it difficult to understand my current endocrinologist’s thick Indian accent and don’t feel comfortable asking her to explain or repeat things, I’m looking into other specialists to see. My psychiatrist also recommended that I seek a doctor attached to a university practice, because as she explained, private practice doctors can become stagnant in their field whereas doctors in a research setting like a university are continually training new interns and exploring new treatment options and may be more receptive to new and alternate forms of treatment.

So, its back to square one for me in terms of finding a doctor, but this time I’m going to research a doctor and their general attitude towards prescribing Cytomel or Thyrolar before I make an appointment.

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This entry was posted on Thursday, November 20th, 2008 at 12:13 pm and is filed under Health, Nutrition & Fitness, Personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

1 On November 20th, 2008, Emily said:

I wanted to say glad to hear the medication seems to be working, but also some advice re: your psychiatrist’s recommendation.

It’s not necessarily true about private practice doctors growing “stagnant” in their field. In fact, if they want to maintain credibility, license, return patients, and of course profit, they absolutely MUST be innovative and learn new things. My father is a “private practice” physician, and he attends several conferences every year all over the U.S. to study up on the latest technology he has to use and maintain his license, although he is technically semi-retired. No offense to either you or your psychiatrist, just wanted to add another side to that particular story. Cheers!

posted on November 20th, 2008 at 12:50 pm

2 On November 20th, 2008, Lisa Baca said:

So many people I know have these aches and pains, I wonder how many have this health problem and don’t know it. I take the T4 meds myself, and was wondering what info might be helpful to discuss with my doctor. You are one of the few people I know who is really taking her health into her own hands. Many of us are just lost.

posted on November 20th, 2008 at 3:58 pm

3 On November 20th, 2008, Maritzia said:

What I did to find a doctor willing to work with me was I sent a letter to every doctor on my insurance who was taking new patients (every family practitioner, since I’ve found them more flexible than internists and definitely more than endocrinologists). I wrote a very polite letter, outlining the treatment I was seeking, my current symptomology, my dosing history, and included some research papers culled from the internet on the use of supraphysiological doses of thyroid. I acknowledged the possible side effects of hyperthyroidism and said I was willing to be closely monitored to make sure I wasn’t becoming toxic on the dose.

Now, out of 52 letters I only got 1 positive response and one maybe, as well as a bunch of very negative responses. You might want to include something about how you do not need to hear back if their answer is negative *rolls eyes*. The more urban your area, you the more possibilities you’ll have. I live in a small city (about 100,000), so my possibilities were more limited. I do have to drive an hour to see a doctor who would work with me, but it’s worth it to get an adequate thyroid dose.

Looking for a doctor this way can save you a lot of time and energy visiting doctor after doctor trying to find just one who will work with you.

I have a page up on my blog about my struggle with this over the years. Check it out for more detailed information. It’s the page titled Fibromyalgia.

posted on November 20th, 2008 at 5:21 pm

4 On November 20th, 2008, Piffle said:

Good to hear that things are getting better with the new drug. May you find an excellent doc that listens to you.

posted on November 20th, 2008 at 5:32 pm

5 On November 20th, 2008, La di Da said:

That’s good news on the Cytomel. I hope you can find a better doctor to work with. My GP ordered the tests I asked for (a full thyroid panel, not just TSH, and a bunch of other things like all the sex hormones, parathyroid, pituitary, and vitamins/minerals/electrolytes) but didn’t seem to think that anything much was “out of order” despite me having a long list of thyroid symptoms and the labs coming back with many things deficient or high that matched a hypothyroid diagnosis (including antibodies!) – because my TSH tested as 2.0. Which is “normal” because the lab range says so. (0.3 – 5.0). Never mind that the lab ranges are being lowered all the time because the range is not an even distribution, the mode is actually around 1.0. I understand that in a lot of European countries the range is down to 0.3-2.5 and some thyroid and endocrinologist associations are pushing for it to be 2.0 for men and 1.5 for women.

So now I have an appointment (2 months away, ergh) with a doctor who comes highly recommended. Hopefully I can get some relief there.

posted on November 20th, 2008 at 6:00 pm

6 On November 20th, 2008, La di Da said:

I forgot to add, have you considered eliminating all non-fermented soy products from your diet? Soy is the most goitregenic food, and having cut that out over the past two weeks I can actually note a small improvement in some symptoms. (Could be a coincidence so I’m going to try it for another 6 weeks.) Tempeh and some soy sauces are still OK, tofu and faux-meats aren’t. And damn, I like tofu.

posted on November 20th, 2008 at 6:13 pm

7 On November 20th, 2008, Rachel said:

I’ve read that too La Di Dah, but it poses some problems for me. I’m vegetarian and a prime source of protein for me are faux meat products that usually contain soy. I am a big fan of Quorn products though, which are soy-free so I’ve reduced some soy consumption. Plus, I don’t like the feeling of food restriction; I find that it triggers past eating disordered behaviors. I might eat some stuff now in moderation, but I generally don’t restrict my dietary choices so drastically.

I asked my endo about it and she said that as long as I put some time between when I take my thyroid pills and when I consume soy, it should be okay.

posted on November 20th, 2008 at 6:41 pm

8 On November 20th, 2008, Bree said:

My OBGYN ordered a thyroid test for me which I will take next month. My former PCP diagnosed me with anemia, which may be the cause of my fatigue and aches and pains that pop up from time to time, but I wouldn’t be surprised if it turns out I do have hypothyroidism. My skin is extremely dry as well. I’ll let you know what I find out.

posted on November 20th, 2008 at 9:14 pm

9 On November 20th, 2008, lilacsigil said:

Thanks very much for posting this – I don’t have such severe symptoms as you

As for private practice doctors, I think there’s a higher proportion of assholes and lazy bastards there, probably because they’re avoiding working with their peers, but there’s also a few absolute gems.

posted on November 20th, 2008 at 10:20 pm

10 On November 21st, 2008, spacedcowgirl said:

Maritzia, your approach sounds great. I once faxed some lab results to my doctor with an accompanying detailed cover letter, and I felt much better about doing that than trying to get the nurse to take a message, or going in for an appointment and stumbling over my words trying to explain things to the doctor (I communicate much better in writing than I do in speaking, and I’m also always worried that I’m “wasting her time,” so I speak quickly and nervously and tend to realize as I get back in my car that I forgot to bring up x, y, or z).

Rachel, thanks for sharing your experience on Cytomel. Firsthand experiences like this are so great to find when I’m trying to find information to prepare myself for a doctor’s appointment, or to see if anyone else is experiencing symptoms like mine. (I’m not hypothyroid as far as I know, but just in general I find it so helpful when people take the time to put up this kind of info.)

posted on November 21st, 2008 at 12:35 am

11 On November 22nd, 2008, Rachel2 said:

spacedcowgirl, I’m exactly the same way. I’m a whiz at writing words, but verbally, not so much.

Rachel, that’s GREAT that you finally got on the Cytomel, and I hope you do find your doctor of choice. I hate being treated like I’m stupid by doctors. I’ve had enough of that lately, and the biggest problem I’ve had is on my blog, should anyone care to click.

I’ve often wondered about my thyroid. I’ve had it checked, but it came back normal, so no further examination was done. The ONE good thing that that particular psychiatrist did was get my thyroid checked. Other than that, he was an ass.

Also, if one is not lucky enough to have health insurance, getting these things done is absolutely out of the question.

posted on November 22nd, 2008 at 3:06 pm

12 On November 23rd, 2008, corrin said:

I was recently diagnosed with hypothyroidism, and after follow-up testing was told that my 50mg dosage of Synthroid was appropriate because my levels were normal. Nevermind that it didn’t relieve any of my symptoms (weight gain, depression, CT symptoms, hairloss).

I had a hell of a time finding an endocrinologist and I feel like I need to go in prepared to fight, but I’ve been given so much conflicting information and very little information by my original doctor, that I don’t know what I’m fighting for or against.

Your entries have been very beneficial. I feel like I can at least start to comprehend all the information.

posted on November 23rd, 2008 at 6:06 pm

13 On November 24th, 2008, Lisa said:

I too take Cytomel, 25mg. Endo only gacve it to me for 10 days along with 125 of synthroid. I am newly diagnosed with Autoimmune Thyroiditis. I have only been on meds for 7 days. I feel 80% better. Lost 8lbs of water weight. My TSH was 89.950 when diagnosed. I wonder if you can stay on cytomel for a long period of time? I will ask my endo next visit. I hope I don’t start feeling like crap when I stop taking it. Good luck!

posted on November 24th, 2008 at 6:05 pm

14 On December 5th, 2008, TJ said:

My husband has autoimmune thyroiditis and was allowed to add cytomel to synthroid a few years ago. It has done wonders, and is definitely NOT something to just take short term.

To get started, it took finding a new doctor. My advice is not to fight with an uncooperative doctor. Write the letter and send the fax to anyone your insurance will cover. Consider DOs in addition to MDs. If you are really stuck with your current doctor, print out a medical journal article on cytomel, hand it to the doctor, and politely ask if the only way you are going to be allowed to try it is to threaten to sue.

This sounds extreme, but it gets their attention. I am extremely insulin resistant. It causes my ovaries to pump out all the wrong hormones. I had to tell my doc that if he didn’t let me try metformin, I wanted my ovaries removed. But ultimately, I switched twice before I found a doctor that would treat me with an appropriate dose.

posted on December 5th, 2008 at 3:46 pm

15 On January 21st, 2009, January is Thyroid Awareness Month » The-F-Word.org said:

[...] the differences between T4-only and mixed regime of T4 and T3 drugs here, as well as an update on my experiences to date in adding Cytomel, a T3 drug, to my medication [...]

posted on January 21st, 2009 at 4:01 pm

16 On March 11th, 2009, Hypothyroidism update and worthless doctor rant » The-F-Word.org said:

[...] November, I reported that the new Cytomel regime had ameliorated much of my overall symptoms. I’m continuing to see improvements — [...]

posted on March 11th, 2009 at 12:23 am

17 On August 12th, 2009, Diane Barnes said:

After a total thyroidectomy four months ago, I went on synthroid 100 mcg. None of my hypo symptoms improved, in fact I became very depressed. More bloodwork and back to the doctor to request Cytomel. He reduced my synthroid to 75 and added 5 mcg cytomel, which has helped a little. I feel like I have to press the doctor to increase the dose, but he told me outright that if the 5mcg didn’t improve the depression, I should see a psychiatrist! But, if I go to a psychiatrist, won’t he/she be reluctant to change my endo’s rx? I think I could be totally normal with more cytomel.

posted on August 12th, 2009 at 1:32 pm

18 On August 12th, 2009, lilacsigil said:

@Diane – the Synthroid dose is weight dependent. 100mcg is a common starting dose, so I would be suspicious that the doctor is just leaving you there as a maintenance dose. I was on 100mcg – totally inadequate – for nearly two years until a different doctor happened to comment that it was weird that my dose had never changed. 100mcg (or your 75/5 regime) may be appropriate for someone weighing about 50kg/110lb. If you are bigger or smaller than that, you should be pushing for a dose change.

posted on August 12th, 2009 at 7:46 pm

19 On March 26th, 2010, Jenny Holliday said:

There are numerous websites that sell generic thyroid meds. My husband is a family doctor and I’ll have to say the profession as a whole is very stuck in their training and views, and have to protect themselves from lawsuits. Just treat yourself, like I do, if you aren’t finding what you need…go on and order and play around with dosages. Just started on liothyronine (cytomel) myself, ordered from an online pharmacy. Will post results later. My gyno wouldn’t order so I just bypassed her and will treat myself.

posted on March 26th, 2010 at 9:12 am