What is your experience with thyroid drugs side effects like Cytomel?
May 18, 2018 4:39 PM Subscribe
My doctor seems to think I have hypothyroidism and has prescribed Cytomel. I've often wondered if my symptoms up until now have included hair loss - but also some Cytomel users have claimed hair loss as a side effect also (something I'd like to avoid)... Can any hypothyroid sufferers help me understand the drugs and side effects?
I'm a 43 yo white male in decent health. But I told my doc last month I'd been suffering for years from:
Fatigue
Increased sensitivity to cold
Constipation
Dry skin
Puffy face
Hoarseness
Muscle weakness
Muscle aches, tenderness and stiffness
Pain, stiffness or swelling in your joints
Thinning hair
Depression
Impaired memory
We did some labs and this was his feedback:
The labs show you to have a free T3 level of 200 pg/dL and a reverse T3 level of 19 ng/dL. This means that your free T3 to RT three ratio equals 10.5. Normal is greater than 20. This would be associated with significant hypothyroidism. Also your estradiol is elevated at 32 (nl <2>
I've wondered for a bit of hair loss was a side effect of what I was suffering from since I've lost more hair (diffuse) than my dad or grandparents at this age. But some Cytomel users claim hair loss from that too...
Anyway, I'm not sure what to make of this diagnosis yet — does any of this sound right to anyone here?
I'm a 43 yo white male in decent health. But I told my doc last month I'd been suffering for years from:
Fatigue
Increased sensitivity to cold
Constipation
Dry skin
Puffy face
Hoarseness
Muscle weakness
Muscle aches, tenderness and stiffness
Pain, stiffness or swelling in your joints
Thinning hair
Depression
Impaired memory
We did some labs and this was his feedback:
The labs show you to have a free T3 level of 200 pg/dL and a reverse T3 level of 19 ng/dL. This means that your free T3 to RT three ratio equals 10.5. Normal is greater than 20. This would be associated with significant hypothyroidism. Also your estradiol is elevated at 32 (nl <2>
I've wondered for a bit of hair loss was a side effect of what I was suffering from since I've lost more hair (diffuse) than my dad or grandparents at this age. But some Cytomel users claim hair loss from that too...
Anyway, I'm not sure what to make of this diagnosis yet — does any of this sound right to anyone here?
Anecdotally, I've been on Cytomel for 12 years and have not experienced hair loss. But more importantly, 1) there just is no way to tell if your existing hair loss is due to hypothyroidism or whether Cytomel will cause this side effect in you, and 2) if you are hypothyroid and get treated for it, you're going to feel so much better that you would never trade it for a few more more follicles.
posted by HotToddy at 4:52 PM on May 18, 2018
posted by HotToddy at 4:52 PM on May 18, 2018
Response by poster: Thank you. How did you feel after starting Cytomel?
Also do you have any experience with the Reverse T3 ratio idea? I've heard some docs mention it like something that is not relevant or respected anymore as a meaningful metric, but my doc seems to.
posted by critzer at 5:00 PM on May 18, 2018
Also do you have any experience with the Reverse T3 ratio idea? I've heard some docs mention it like something that is not relevant or respected anymore as a meaningful metric, but my doc seems to.
posted by critzer at 5:00 PM on May 18, 2018
I haven't taken cytomel, but I am a woman with hypothyroidism. i feel SO MUCH BETTER on thyroid replacement that I can hardly recommend it enough. I had dry skin, hair loss, nagging chronic constipation, fatigue that I couldn't address with lots and lots of sleep. Starting on Levothyroxin has been life-changingly wonderful. All the metabolic problems have gone away. Constipation is a thing of the past. And my thyroid levels were only minimally abnormal.
I wouldn't worry too much about the reverse T3. That's really a test that is important only if you begin on thyroid replacement and feel no better - your doc is wading into the weeds before the landscape is defined. It's a next-step test that is usually not needed, and therefore not done in a normal work-up of newly-diagnosed hypothyroid. Your symptoms are classic for hypothyroid, your tests support it. Start on replacement and see how you feel. Keep in mind that it will take at least a month to feel much difference, and up to 3 months for the full effect.
posted by citygirl at 6:48 PM on May 18, 2018 [3 favorites]
I wouldn't worry too much about the reverse T3. That's really a test that is important only if you begin on thyroid replacement and feel no better - your doc is wading into the weeds before the landscape is defined. It's a next-step test that is usually not needed, and therefore not done in a normal work-up of newly-diagnosed hypothyroid. Your symptoms are classic for hypothyroid, your tests support it. Start on replacement and see how you feel. Keep in mind that it will take at least a month to feel much difference, and up to 3 months for the full effect.
posted by citygirl at 6:48 PM on May 18, 2018 [3 favorites]
Hypothyroid medication changed my life so much for the better. Symptoms that had plauged me for years disappeared.
Just take it, really. If something of happens that your unhappy enough with to stop the med I would be really surprised. I won't let it go.
I take standard levothyroxine (synthroid). It is cheap and does the job for me.
posted by AlexiaSky at 8:22 PM on May 18, 2018 [2 favorites]
Just take it, really. If something of happens that your unhappy enough with to stop the med I would be really surprised. I won't let it go.
I take standard levothyroxine (synthroid). It is cheap and does the job for me.
posted by AlexiaSky at 8:22 PM on May 18, 2018 [2 favorites]
My situation was different from yours. I had thyroid cancer and had my thyroid totally removed. Afterward, I was taking levothyroxine alone and still felt terrible, so they added Cytomel. I felt better almost immediately and have continued to take it since then. I'm sorry, I've never heard of reverse T3 so can't help you there.
posted by HotToddy at 8:48 PM on May 18, 2018
posted by HotToddy at 8:48 PM on May 18, 2018
I take both. Unlike the others I do not feel terrific bc of starting thyroid replacement hormone, so ymmv, but of course you must be on the replacement hormones. As for cytomel and hairloss .. Maybe , but agree w/ above poster - might as well give it a go, hair loss could result from either the underlying condition or the cytomel so .. there'll be no way to know.
posted by elgee at 9:01 PM on May 18, 2018
posted by elgee at 9:01 PM on May 18, 2018
I am not sure why your doc is jumping straight to Cytomel when from what I know Levothyroxin (Synthroid) is the usual first replacement drug tried-- it is dirt cheap, stable, and most people respond well to it. Can you ask why Cytomel instead of Synthroid? There can be a couple of less-ideal answers here-- that he is being courted by the pharma company and gets kickbacks for prescribing it, or he is kind of overthinking things and jumping to the more exotic drug first because he is that kind of bean-plating doctor. OR, maybe there is a valid medical reason for it, and he can rationally justify his recommendation.
I also agree with what citygirl and AlexiaSky wrote upthread. Also, have you considered that your 40's are the time that many men start to lose their hair, regardless of whether or not they have thyroid problems? It just may be that time. (Bad news-- your eyes start to lose it around this time, too.)
I am Totally trying not to into a discussion of the other thyroid drug Armor, which is made from actual dried pig glands. It is my perception that most reputable doctors think Synthroid is better than Armor, but some "natural health" people continue to advocate for it-- I don't know why. Synthroid has almost complete bio-availability, costs less than one penny per pill, and has more than one hundred years of data showing it is safe.
Source: 50 year-old-male diagnosed hypothyroidism more than 15 years-- personality type to research exhaustively any medical condition he has.
posted by seasparrow at 11:47 PM on May 18, 2018 [3 favorites]
I also agree with what citygirl and AlexiaSky wrote upthread. Also, have you considered that your 40's are the time that many men start to lose their hair, regardless of whether or not they have thyroid problems? It just may be that time. (Bad news-- your eyes start to lose it around this time, too.)
I am Totally trying not to into a discussion of the other thyroid drug Armor, which is made from actual dried pig glands. It is my perception that most reputable doctors think Synthroid is better than Armor, but some "natural health" people continue to advocate for it-- I don't know why. Synthroid has almost complete bio-availability, costs less than one penny per pill, and has more than one hundred years of data showing it is safe.
Source: 50 year-old-male diagnosed hypothyroidism more than 15 years-- personality type to research exhaustively any medical condition he has.
posted by seasparrow at 11:47 PM on May 18, 2018 [3 favorites]
i had most of your symptoms - fatigue for days (honestly, i'd climb a flight of stairs and just want to lie down on the landing -- which is sort of nuts for a 27 yr old), hair loss, always freezing, dry skin, weakness, depression, brain fog etc. etc. christ, with all the shit i forgetting i thought i was honestly experiencing some type of early dementia. anyway –- if you believe it, the hair loss was why i went to see a doc. ha. and my hypothyroidism is subclinical. the numbers are off by just a hair and my doc was little dubious about prescribing me anything but thank god she did. was a game changer - feel back to my normal self.
I'm also on Levothyroxin and gotta say, was not thrilled at the prospect of a lifetime of popping these little pills but you get used to it. They're cheap and taking them about a half hour before eating has created some habits for me that are actually hella nice (small yoga session / time to sit and think before mindlessly roaming through every cupboard in the kitchen and launching into the fray) and and i'd def. look into what TCM recommends too -- its mostly pretty common sense advice, like decreasing things that stress you out, setting a decent sleeping/rest schedule, exercise, good food (lots of warming spices!) etc. also, your diet may need some tweaking (eating less stuff like white flour & sugar, soy and cruciferous vegetables) – but you figure it out as you go.
Good luck! I hope you feel better soon.
posted by speakeasy at 5:54 AM on May 19, 2018
I'm also on Levothyroxin and gotta say, was not thrilled at the prospect of a lifetime of popping these little pills but you get used to it. They're cheap and taking them about a half hour before eating has created some habits for me that are actually hella nice (small yoga session / time to sit and think before mindlessly roaming through every cupboard in the kitchen and launching into the fray) and and i'd def. look into what TCM recommends too -- its mostly pretty common sense advice, like decreasing things that stress you out, setting a decent sleeping/rest schedule, exercise, good food (lots of warming spices!) etc. also, your diet may need some tweaking (eating less stuff like white flour & sugar, soy and cruciferous vegetables) – but you figure it out as you go.
Good luck! I hope you feel better soon.
posted by speakeasy at 5:54 AM on May 19, 2018
Response by poster: Thank you guys so much for the input here, it is really important to my understanding more about what I'm embarking on and I'm feeling less nervous about the meds. Getting much more thoughtful / coherent feedback here than on the typical hypothyroid forums.
I am not sure why your doc is jumping straight to Cytomel when from what I know Levothyroxin (Synthroid) is the usual first replacement drug tried
Here is what the doc said about that:
Your freeT3 was overtly low, which would normally be associated with hypothyroid symptoms and signs. and 2. Your free T3/Rt3 ration was 10.5, when >20 is normal. This also normally means hypothyroidism, but also that treatment needs to be T3-only.
posted by critzer at 8:50 AM on May 19, 2018 [2 favorites]
I am not sure why your doc is jumping straight to Cytomel when from what I know Levothyroxin (Synthroid) is the usual first replacement drug tried
Here is what the doc said about that:
Your freeT3 was overtly low, which would normally be associated with hypothyroid symptoms and signs. and 2. Your free T3/Rt3 ration was 10.5, when >20 is normal. This also normally means hypothyroidism, but also that treatment needs to be T3-only.
posted by critzer at 8:50 AM on May 19, 2018 [2 favorites]
Best answer: Cytomel is great stuff, if you need it. It does not in itself cause hair loss, if your dosage is right, but swings in your overall thyroid status can. Usually people complain about hair loss when they're not getting enough thyroid hormone, of whatever form they're taking, but it can happen if you're getting too much, as well. It's just important to get your dosage right and keep it that way.
Note that it takes six weeks after a change in levothyroxine (Synthroid or T4) dosage before you can rely on a blood test to show what it's doing, but liothyronine (Cytomel or T3) is faster-acting. You can feel the results from Cytomel right away, and you can get a reliable blood test only two or three weeks after a change in Cytomel dosage.
When you report your free T3 and free T4 blood test results, please include the reference range the lab gives with them. It's important to see whether you're in the bottom of the reference range, middle, or top.
I think it's good news that your doctor is paying attention to both your T3 levels and your T4 levels. Too many doctors pay attention only to T4; many people feel terrible if their T3 levels are low, even if their T4 levels are high enough.
Vocabulary note: "T4" means levothyroxine, which is the thyroid hormone which has four iodine atoms on it, which is the slower-acting form; "T3" means liothyronine, which is the thyroid hormone that has three iodine atoms on it, which is the faster-acting form.
posted by chromium at 1:22 PM on May 19, 2018 [2 favorites]
Note that it takes six weeks after a change in levothyroxine (Synthroid or T4) dosage before you can rely on a blood test to show what it's doing, but liothyronine (Cytomel or T3) is faster-acting. You can feel the results from Cytomel right away, and you can get a reliable blood test only two or three weeks after a change in Cytomel dosage.
When you report your free T3 and free T4 blood test results, please include the reference range the lab gives with them. It's important to see whether you're in the bottom of the reference range, middle, or top.
I think it's good news that your doctor is paying attention to both your T3 levels and your T4 levels. Too many doctors pay attention only to T4; many people feel terrible if their T3 levels are low, even if their T4 levels are high enough.
Vocabulary note: "T4" means levothyroxine, which is the thyroid hormone which has four iodine atoms on it, which is the slower-acting form; "T3" means liothyronine, which is the thyroid hormone that has three iodine atoms on it, which is the faster-acting form.
posted by chromium at 1:22 PM on May 19, 2018 [2 favorites]
I am Totally trying not to into a discussion of the other thyroid drug Armor, which is made from actual dried pig glands. It is my perception that most reputable doctors think Synthroid is better than Armor, but some "natural health" people continue to advocate for it-- I don't know why. Synthroid has almost complete bio-availability, costs less than one penny per pill, and has more than one hundred years of data showing it is safe.
Synthetic thyroid was not invented until 1927 (less than 100 years ago). Desiccated thyroid extract (sold under the name Armour and others) has been safely used for much longer than that. The thyroid gland produces mostly T4, which is converted by an enzyme in the body to T3, which is the "true hormone" that affects physiologic processes in the body. Synthroid contains only synthetic T4, which is supposed to be converted to T3 in the body. Armour contains both T4 and T3, as well as several other thyroid hormones.
Many people with hypothyroidism do well on Synthroid only replacement. For some of us "natural health people," that is not the case. Perhaps our bodies do not convert T4 to T3 properly; perhaps the other minor thyroid hormones are more important to us than is understood by the medical profession. For people like us, we have found that we feel better on the combination T4/T3 therapy that Armour provides. Some feel better on synthetic T4/T3 combinations where the ratios can be more precisely adjusted. Some even take a combination of natural and synthetics and do well on that.
It was a number of those "most reputable doctors" who preferred to ignore my clinical symptoms in favor of their inaccurate blood tests that kept me sick for several years and put me through expensive and painful tests trying to figure out what was wrong with me. I have done very well on natural thyroid for over 10 years and only have my symptoms return if some doctor tries to switch me back to synthetic-only or reduce the dose based on blood tests only rather than symptoms.
So yeah, that's why some "natural health people" continue to advocate for it.
posted by Preserver at 8:17 AM on May 20, 2018 [2 favorites]
Synthetic thyroid was not invented until 1927 (less than 100 years ago). Desiccated thyroid extract (sold under the name Armour and others) has been safely used for much longer than that. The thyroid gland produces mostly T4, which is converted by an enzyme in the body to T3, which is the "true hormone" that affects physiologic processes in the body. Synthroid contains only synthetic T4, which is supposed to be converted to T3 in the body. Armour contains both T4 and T3, as well as several other thyroid hormones.
Many people with hypothyroidism do well on Synthroid only replacement. For some of us "natural health people," that is not the case. Perhaps our bodies do not convert T4 to T3 properly; perhaps the other minor thyroid hormones are more important to us than is understood by the medical profession. For people like us, we have found that we feel better on the combination T4/T3 therapy that Armour provides. Some feel better on synthetic T4/T3 combinations where the ratios can be more precisely adjusted. Some even take a combination of natural and synthetics and do well on that.
It was a number of those "most reputable doctors" who preferred to ignore my clinical symptoms in favor of their inaccurate blood tests that kept me sick for several years and put me through expensive and painful tests trying to figure out what was wrong with me. I have done very well on natural thyroid for over 10 years and only have my symptoms return if some doctor tries to switch me back to synthetic-only or reduce the dose based on blood tests only rather than symptoms.
So yeah, that's why some "natural health people" continue to advocate for it.
posted by Preserver at 8:17 AM on May 20, 2018 [2 favorites]
↑ my bud also has hypothyroidism and the only med that helped with her feeling ridiculously cold all the time was Armor - so yeah, i think there are different ways to tackle the 'same' issue
posted by speakeasy at 10:57 AM on May 20, 2018 [1 favorite]
posted by speakeasy at 10:57 AM on May 20, 2018 [1 favorite]
This thread is closed to new comments.
triiodothyronine (T3), serum: 101 ng/dL
thyroxine, serum, total: 9.0 ug/dL
thyroxine, serum, free: 1.4 ng/dL
thyroid stimulating hormone, serum: 1.67
thyroid peroxidase autoantibody, serum: <1>
thyroglobulin antibody: <1 IU/mL
posted by critzer at 4:41 PM on May 18, 2018