Why am I still tired even on a high dose of Cytomel?

[Sunshine_67]

I've been taking 25mcg of generic Cytomel in addition to my 100mcg of Synthroid and I'm still tired at times during the day and crash every night by 8:30pm. I've tried taking the whole dose at one and also splitting it up during the day. I'll have several good hours where I feel ok, but then suddenly it hits me like a train and I'm exhausted again and my eyes feel heavy. I've only been taking the Cytomel a week, but I read it was fast acting so you didn't need weeks like synthroid to feel a difference.

[Normallifeispossible]

IMPORTANT INFORMATION FOR ALL OF YOU! It is about time that doctors start informing themselves about the condition they are trying to treat with sometimes zero knowledge. I have seen doctors who do NOT know that hypothyroidism causes or can cause: 1. Extreme weight gain through fluid retention despite zero appetite and no food (the body tissue starts to absorb water like a sponge, literally). 2. Extreme fatigue during the day. 3. Insomnia. 4. Low immune system (Hashimoto). 5. Difficulties waking up. 6. Depression. And let me tell you : 25 mcg is actually still a small dose. There are many people who need 100 mcg, and those with thyroid hormone resistances sometimes have to take doses unheard of just to survive (I am talking about cytomel). The symptoms you describe, like that typical fatigue a few hours after getting are some of the most common symptoms of hypothyroidism, I have been through it. Mostly, I felt completely exhausted and knocked out 6 hours after getting up (and the latter was still an extreme challenge despite 12-13 hours of sleep) and eventually, I felt like dead just 2 hours after getting up. Who told you that cytomel is enough once a week? If you need it, it is because your body doesn't produce enough of it (doesn't convert T4/thyroxine into T3 or not enough of it) and T3 (cytomel) is crucial for our bodies to survive and you need to take it on a daily basis. Many doctors associate T3 with their patients' desire to lose weight but in reality, T3 will reverse the fluid retentions in those patients who gained weight from exactly that and improve digestion, metabolism etc. if they were slow due to a lack of thyroid medicine. When there's  lack of T3 either because not enough Thyroxine or T3 (triiodothyronine) are taken, it will give you those exact symptoms you describe and much more. I hope that enough patients will receive the treatment they need and be given a sufficient dose to get rid of their hypo symptoms because it really is possible with the correct amount. Also, be aware that if you suffer from Hashimoto's, you need to increase the dose every time your thyroid glands get destroyed further. I wish more doctors would take their patients seriously. Why after all would anyone complain about symptoms they have never had before? Thyroid patients long to live a normal life again more than anything! Please try to find a doctor who is familiar with your symptoms and takes them seriously.

[Sunshine_67]

It's not a sleeping problem, it's my thyroid, and possibly adrenal fatigue. I know this because I've never had a problem sleeping or snoring at all, I've only had problems feeling tired and not well since I started thryoid treatment, and it's because I've had incompetent doctors who kept me undermedicated for almost a year. I'm now playing catch-up and obviously very impatient.

[Rootsgal]

I cannot find  decent endocrinologist, I switched after giving the first one 14 years. When I switched, the next FEMALE doctor called me a "doctor shopper" when I asked her about adding Cytomel. She disagreed but she ended up prescribing it when I told her I am freezing and napping all the time. I took my temp before getting out of bed for 2 weeks and it was 97-97.3. She said "that is normal". I can tell her hates me already. SHE ONLY CARES ABOUT THE NUMBERS!

[Rootsgal]

I cannot find  decent endocrinologist, I switched after giving the first one 14 years. When I switched, the next FEMALE doctor called me a "doctor shopper" when I asked her about adding Cytomel. She disagreed but she ended up prescribing it when I told her I am freezing and napping all the time. I took my temp before getting out of bed for 2 weeks and it was 97-97.3. She said "that is normal". I can tell she hates me already. SHE ONLY CARES ABOUT THE NUMBERS!

[Douglas67]

I’m on 200mc of synthroid, and had similar experience being tired in the day or just in a Fog. What I’ve done to cure that I s before going to bed I take my synthroid and once I awake take my T-3 and that cured it right away. Synthroid is in active and T-3 is active so give it a try good results will occur for you

[Mkwesty]

I take 300mcg synthyroid and 10mcg Cytomel. I've been on 100mcg for 10 years. Went over seas for 6 months and ran out of my synthyroid for 1.5 months, three days after getting home I went to Emergency room twice and 4 Dr's because of serious issues; mind racing, can't read, can't concentrate, heart rate, paranoia, extreme anxiety, severe shaking episodes, no sleep for days but when I did sleep I wake up every 45mins for total of 4hrs. After 2 ER visits and 4 Dr's they thought I was either on drugs (urine and blood clean) or serious mental issues. Finally a family friend Dr said to get thyroid tested. Went to my endo. He found that (can't remember what reading) my thyroid read 527 should be between 2.5 and 5.0!! 7 days later I was perfect... With this experience I wanted to let everyone know how important it is to not run out of your synthyroid and yes it can cause severe medical issues..

[gimel]

Your dosage seems a bit unusual.  Do you have any symptoms now?  What are your Free T4 and Free T3 levels?  Have you been tested for Vitamin D, B12 and ferritin?

[gimel]

Please post your thyroid related test results and reference ranges shown on the lab report.  Also, have you been prescribed thyroid med?  If so, what med and what is the daily dosage?  Also, have you been tested for Vitamin D, B12 and ferritin?  If so, please post those as well.  

I think you can get some good information that might help with your doctor by reading the first two pages of the following link, and more if you want to get into the discussion and scientific evidence supporting all the suggestions.  The info is all factual and a copy of the paper might help get your doctor to reconsider what is adequate treatment.   If not, if you will tell us your location perhaps we can suggest a doctor that has been recommended by other thyroid patients.  

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

[monica148]

I am glad to read the dialogue about fatigue.  I can't seem to understand why I have it, and want to get over it.  I had a total thyroidectomy in June, RAI in July, and am on 150 of synthyroid.  I am not working, as I am too tired.  I want to get my energy back and am frustrated.  My labs from yesterday are TSH ,0.05, Free T4 1.6, Calcium 8.9, and phosphorus 3.4.  All are within normal range.
I have mets to my neck, both lungs and my bone.  Is THAT why I continue to be tired?
Please give me some ideas.  I appreciate it very much and wish you all energy and health.

[Smilerdeb]

Ive just read these postings and noticed one thing........
Many blame the thyroid for EVERY little thing that goes wrong or when they arent well.

Look outside the square you live in.

90% of the time it is the thyroid causing the problems but 10% of the time, it is something completely different from the thyroid causing symptoms.
The Endocrine system is very vast and very complicated.

Dont blame the thyroid for everything.

[Rootsgal]

I had a major back surgery and then weaned myself down off Oxycodone, Weaning off narcotics has a side effect of being so exhausted to the point you can barely move. I endured that for 3 months to no avail, I told my neurosurgeon and he blamed my thyroid, so round and round we go. Finger pointing is not helping me at all. It was also discovered I have an infected abscess in my lumbar spine, and the hospital called the neurosurgeon before I left the building, He completely ignored it and said they were "over reacting". I m exhausted for some reason yet nobody seems to care to find out why! Talk about frustrating, Paying all these co-pays to be no better off. Welcome to health care in America.

[Sunshine_67]

Right now I'm cutting my 25mcg pill in half, so I'm only taking 12.5mcg a day. Since it only seems to have a half life of 8 hours, I'm taking my synthroid in the morning and the cytomel at noon, so I can hopefully have energy in the afternoon. Since I'm already cutting the one pill in half, I don't think I can cut it into quarters without it crumbling.

It actually only took 2 weeks to know the 25mcg was too high. My heart was beating way too fast, I was very jittery and hot. I felt like I could pass out any minute most of yesterday.

Yes, I've had my parathyroid checked and it was fine. I believe I have very high cortisol levels, so that's probably also causing the fatigue. Most docs don't know how to treat adrenal fatigue or cortisol issues though unless it's Addison's or Cushings. Mine's not that extreme, but bad enough to add to the fatigue.

[Barb135]

Yes, my endo is more expensive also so I understand about the $ issue.  

I'm not sure what you mean by "Even though I'm only taking half a pill, I'm still afraid I'll be tired in the morning since the cytomel will probably have worn off by then".  Are you taking cytomel in the evening, hoping that it will help you "wake up" in the morning?  I take my cytomel early enough in the day to be sure it's worn off by bedtime, so I can sleep.  Then in the morning, when I want the "boost" to get through the day, I take my next dose.  I'm only on 5 mcg now - had to lower from 10 because of heart palps, but when I was on 10, I took it in 2 doses, but still made sure I didn't take it later than noon, because I wanted it to be gone by bedtime - that's because I go to bed so early.  Sometimes, I'm a bit "draggy" when I first get up, but getting into the shower and getting ready for work helps wake me up, then I take my cytomel at 7:00 to keep me going until I'm ready to start winding down again to go to bed again - I don't have the option of napping during the day either, plus my job requires me to do a lot of driving ----

I think though, that you might continue to have a fatigue problem until the cytomel has a chance to get your Free T3 levels up.  I think I mentioned earlier in this thread, that I've been on it since January and only on my Aug blood work, was my Free T3 above the mid range for the first time.  If after a few months on it, you don't feel any better, you might have to look elsewhere for your fatigue problem.  

Have you tried other vitamins? I've read that vitamin C can help relieve fatigue.  

Additionally, has anyone thought to look into your parathyroids? You have 4 of them and they are located directly behind your thyroid, although they have no connection to your thyroid.  There's an excellent website that you could look into www.parathyroid.com  which has a whole page of symptoms --- sounds like you have a lot of those symptoms and it might be worth looking into that..........

[Sunshine_67]

I think the sleep issues are part of the adrenal problems. I'm actually on my 3rd doctor. I may try to find a new one next year when my flex money starts again, but unfortunately right now I can't afford to find a new doctor. My co-pay for specialists (endos) is $60. I've run out of my flex money and can't afford to take that out of my check. My current doc is a GP, so his co-pay is only $25.

Even though I'm only taking half a pill, I'm still afraid I'll be tired in the morning since the cytomel will probably have worn off by then. I wish I could afford the brand name, as I know those are better, but the stupid insurance companies don't seem to care if we actually take quality meds, just cheap ones.

[Barb135]

I think you are probably right, that your fatigue is thyroid/adrenal related - I know this isn't what you want to hear, but it's just going to take time to work it out.

One thing you do need to do is stay consistent with your cytomel. Decide if you are going to take it all in one dose or split into 2 and then stay with that for at least a few weeks.  Even though cytomel is "fast acting" meaning it goes right to work, it still takes time for your FT3 levels to come up to a consistent level - or at least it did mine.  

The calcium thing IS hard to work out because of not being able to take it within 4 hrs of thyroid med.  I got a pill organizer that goes for 7 days and you can split am and pm meds.  I load it up every Monday morning.  I take my levo at 3:30 am when I get up so don't need that in my organizer.  I have to be at work by 6:00, so I take my cytomel and blood pressure med at 7:00 am; at noon, I take 600 mg calcium, my mulit, 200 mg selenium and 1000 mg vitamin C.  Then at 6:00 pm, I take another 600 mg calcium, 200 mg magnesium and another 1000 mg vitamin C.  I even have the alarm on my cell phone set for 7:00 am, 12:00 pm and 6:00 pm so I don't forget!!!  Yep, still have a bit of trouble remembering once in a while.  

I find that we can "get away" with all kinds of things - we just can't get away with inconsistency.  It wasn't easy figuring out how to "jockey" all these things around without having to stand at the sink and take 10 pills at one time, but I finally figured out what works for me for right now.......

I had a very busy day today and coming home this afternoon, traffic was VERY slow and I got into "sleep mode" --- I just knew that if I could get stopped at a red light, I could catch a catnap and be fine.............lol.  I hate when that happens and of course, I did not go to sleep but it was a struggle.  

LazyMoose had a point about the sleep -- I have read some of the journals by Dr Steven Parks, who is a sleep specialist and from what I understand, we don't necessarily HAVE to snore or have a problem sleeping to have sleep apnea.  Some of us just aren't getting *restful* sleep no matter what we do.  I've never had a sleep study and I never thought I needed one until I read some of Dr Parks work.  He has even had a couple of "live chats" on the thyroid forum to talk about the relationship between thyroid issues and sleep.  It's quite interesting and definitely food for thought.  Of course, for some of us, insurance won't cover things like sleep studies and I would guess the cost could be prohibitive.  

I know in my case, I go to bed very early - usually around 7:30, since I get up at 3:30 am.  I always try to read for at least a few minutes to get calm and settled enough for sleep; and once I turn off the light, I drop right off.  The problem is that quite often, I'll wake up around 10:30 or so and not be able to get back to sleep again for a couple of hours and then of course, it's almost time to get up....OR I'll sleep like a log until around 2:00 or 2:30, then when I wake up, there's no way I'm getting back to sleep because it's too close to time to get up.  My endo suggested that I take tylenol PM to help me stay asleep.  That works so I don't wake up at 10:30, but then I do wake up at 2:30, which is an hour too early ---- drat!!!!    

Anyway, the consistency of taking your meds and sleep issues are definitely 2 things to keep in mind.  Another is that maybe it's time for you to find a different doctor.  It's no good having one who won't listen and work with you.  Praying that you get to feeling better.....

[Sunshine_67]

I just called my dr. and he said to take half a pill a day (12.5 mcg). Today I was really having hyper symptoms (hot, fast heart beat, jittery, tired). So I guess I'll see how that goes.

[LazyMoose]

Sometimes after you have tried every thyroid med, vitamins and other supplements  it might be time to look at other causes. I was most tired when my thyroid hurt / sore throat and when I had night acid reflux because my quality of sleep was poor. A lot of people can sleep eight hours or more and never get enough deep sleep or REM to function the next day!  They have no way of knowing this until they get a sleep study test. Also people that snore or just sleep with their mouth open are more likely to have sleep apnea, and don't no this.

If you have tried everything else ask a doctor about a sleep study and check out your insurance coverage. The test can reveal some very interesting facts about the type of sleep you get in what position and how you breath / stop breathing at times.

[Sunshine_67]

Also, I cannot afford the brand name Cytomel, which is why I got the generic. My insurance considers the brand a non-preferred drug and charges $50. Same with the brand Armour, but I've heard that's a lot cheaper to buy without using insurance.

[Sunshine_67]

I've had my Vit. D checked regularly and it's been in the normal range (I don't know where in that range it needs to be to be optimal though). My B12 is fine and my iron is fine, although regular iron, not ferritin was checked. I can't seem to find a dr. willing to check ferritin.

I have osteoporosis and my bone scans have been up and down since I started on thyroid meds. The latest ones in June went down. I'm guessing it's because my thyroid levels have been low for almost a year. From what I've read, bones are only in danger when someone goes hyper. It has nothing to do with adding T3, unless they're taking too much.

I tried to get my dr. to increase my synthroid, but he refused even though I told him I felt better when it was higher. He gave me cytomel instead. I get new labwork done in 3 weeks, so I guess I'll see if the FT4 has gone up any.

During the week I get up at 5:00am and take my synthroid. I haven't figured out yet if it's better to split the cytomel during the day or take it all at once. I'm still experimenting. My dose is all one pill. I already take a multi-vitamin, magnesium, B supplement, Vitamin D supplement and calcium, although it's been difficult fitting all this in at the end of the day since I can't take most of it within 4 hours of any thyroid meds. I'm not able to get as much calcium as I need to for my osteoporosis, so I was thinking of switching to Armour once the shortage is over.

I have a full time job so I'm not able to nap or even rest for a minute until I get home. I totally relate to wanting to sleep at stoplights or falling asleep when you don't mean to. I'm very frustrated. I can barely make it thru a day at work and I'm never able to see my friends since I can't stay awake past 8pm.

[Barb135]

I am not a doctor, but I do not believe that cytomel will cause bone degneration.  I take cytomel and have actually begun to rebuild bone that I had been losing due to osteopenia; however, I don't think the cytomel has anything to do with that.  I think it's the calcium, magnesium, exercise and better diet.  Cytomel has helped me a great deal because it has brought my FT3 levels up to where they need to be.  Both your FT4 and FT3 levels are toward the lower end of the range, but I don't think I'd add any more cytomel - I'd probably try increasing the synthroid by just a small amount.

But then I reread your post and since you've only been taking the cytomel for a week, you might need to give it more time.  It is fast acting, but I'm finding that it still takes time to start feeling better.  I've been on it since Jan 09 and just when I had my blood work in Aug was my FT3 finally over 300 (same range as yours).   One thing I do is take my levo when I get up at 3:30 am, then take my cytomel around 7:00 am to carry me through the day.  I don't know what time you get up, but you could try the synthroid first thing, wait a couple hours, then take 1/2 the cytomel, then a few hours later the other 1/2 of the cytomel.... OR you could split the cytomel into more than 2 doses.  Is your dose all in one tablet?  

My latest TSH was 0.03 and my endo was concerned about it because he thinks keeping the TSH suppressed that low will cause osteoporosis, but I've read several articles that say not, plus I have my latest bone scan to back up the fact that I am rebuilding bone, not losing it.   I've pretty much talked him into ignoring the TSH, so long as my FT's stay at a point where I feel relatively good.  

You could ask to get your vitamin B12 tested.  I have pernicious anemia and take shots every 2 weeks.  It can help immensely if you are deficient, but if you aren't deficient, I can't see where it will do you any good.  One symptom of pernicious anemia is fatigue. You might also want to get your vitamin D tested - it seems that can be a big deal with some of us.  I've recently discovered that I'm deficient in that as well and will find out what course to take when I see my doctor later this month.  

There are other vitamins/minerals that you can take that might help as well, such as calcium (not within 4 hrs of thyroid med), magnesium, selenium, vitamin C, B complex, a good multi, etc.  

I do understand about your tiredness - I've been there myself.  Trying to drive home from work and getting so sleepy, I felt like I just HAD to nap at the red lights.........talk about scary!!!  Or sitting down to watch TV for a few minutes and waking up an hour later!!  I do still get some of those episodes, but they are becoming further apart and less severe as time goes on.  I hope yours will too.  

[ckelly6156]

Cytomel is T3. It is a booster for this hormone and can cause bone degeneration if not monitored properly. I have taken it before, and it has not made a difference in my energy level. I would talk to your doc about getting off the T3 and getting B12 shots regularly. If that does not work, take a nap in afternoon, if you cant take a nap try some vitamins. If this doesnt work then you are sol just like me.

Here are some other things to consider that could cause daytime sleepiness:

Stress
Poor Diet
Low Iron
Anemia (B12 should help)

[gimel]

Following is based on a recent post of mine that I thought you might find interesting.




Since TSH is a pituitary hormone and affected by so many variables, I have little regard for its use as a diagnostic.   At best it is an indicator, to be considered along with symptoms and the "Frees".  A TSH suppressed below the reference range limit doesn't automatically make you hyper.  Only having hyper symptoms should classify you as hyper. In my opinion, the best way to treat a thyroid patient is to test and adjust FT3 and FT4 levels with meds, as required to alleviate symptoms.  It should be all about symptom relief and not just getting test results somewhere within very broad reference ranges.



The reason the reference ranges for the "Frees" are called "normal", is that they are based on a large population of patients' test results.  From that data base the decision was made that about 2.5 % of people would fall out of each end of this "normal" range because they were possibly hypo or hyper.  From this decision limits were placed  at plus and minus two standard deviations (which correlates with plus or minus 2.5%) from the overall average and that was called the "normal" range, supposedly representing people who had no thyroid problems.  

After many years of bad experience with this "normal" range for TSH, the AACE  finally acknowledged 6 years ago that there were a lot more patients out there with hypo  and hyper problems than previously recognized when they originally established the range.  
After excluding from the data base those patients who were suspect for hypo and hyper, they again analyzed the remaining data base and established limits that included 95% of the total data base and called these new limits "normal".  This changed the reference range from .5-5.0  down to .3-3.0, which is a huge change.  Unfortunately this change hasn't yet been accepted or acknowledged by most labs and doctors.

Also, realize that the reference ranges for the "Frees" were established the same basic way.  These ranges have never been reexamined and modified like the range for TSH.  I am absolutely convinced that this is the reason why so many hypo people fall into the lower end of the ranges for FT3 and FT4 and are still told they are "normal".

In one my past lives I had a lot of training and experience in statistical analysis.  Based on that experience, if I had to estimate what a revised range for FT3 would be if the data base were purged of suspect hypo and hyper people, like was done for TSH, then I would say the FT3 range should change from 2.3-4.2 pg/dl up to about 3.2-4.3.  And FT4 probably would change from .60-1.50ng/dl up to about 1.0-1.55. Quite a difference, huh?  Think maybe that is why we hear from so many people that have hypo symptoms, yet they are in the "normal" ranges for the "Frees"?  I'd bet my last dollar.






Also, if you haven't read this article, you may find it worthwhile.
http://www.hormonerestoration.com/Thyroid.html

[laura1967]

First I would be wary of the generic version of Cytomel....my endo feels the same way.
Secondly, yes that does seem like a too high of dosage of T3 according to your test results above. I look forward to seeing your next test results.
Try to post them to this same post so we can compare!  :)

[Sunshine_67]

These labs were done last month.
TSH .04 (.4-.4.5)
FT4 1.2 (.8-1.8)
FT3 294 (230-420)

It's a lot more than being tired as the day goes on. I'm tired when I wake up, even after sleeping 8 hours (I wake up a couple times, but go right back to sleep). I usually only feel awake about 2 hours out of the entire day. Then I crash around 8:00pm even if all I've done is lie on the couch all day. My lower eyelids get really heavy and my whole body feels like lead. It's not the same tired as healthy people. I don't yawn. I just suddenly feel exhausted and heavy.

I know my FT4 levels were still low, but my dr. insisted they were fine. I get retested at the end of the month.

[Rootsgal]

I also have this exact problem but my endocrinologist insists it is NOT linked to me having Hashimoto's. I feel like I live the life of a 2 year old with 2 long naps. One at 10AM the other at 2 to 3PM.

[Barb135]

Do you know what your thyroid levels are?  25 mcg cytomel is a rather large dose - maybe you are getting too much.  Being tired can be a symptom of both hypER and hypO.  And don't forget that as we go about our busy days, it's natural to get tired.  I get up at 3:30 am every day, so by 7:00 or 7:30 pm, I'm totally done.  And I do still have times throughout the day, when I get draggy and sleepy.

It would be very helpful if you could post your most current lab results, along with the lab's reference ranges.  That would give members a better idea about what  might be happening.