Cytomel Hell

Diabetes Complications and other Conditions Other Conditions
#1

Well, looks like I may have to add another oral med to my dust-bin list. It seems that I cannot tolerate Cytomel, not even at only a 5mcg dosage. I was hoping that the bloating, diarrhea, increased tinnitus, and weird feeling would resolve, but those bothersome side effects continue to linger. Not only that, I’m now feeling even more fatigue than before the switch from Synthoid-only therapy. I will give Cytomel another week, and if the side effects do not resolve, I’m going to stop taking it.

I see my PCP next month. If I don’t feel any better by then, I’m going to ask him to Rx desiccated thyroid. I am so tired of feeling tired.

Has anyone else had adverse side effects from taking Cytomel, and if so, did they resolve? What did you do?

#2

How much T4 are you on and how much T3 were you adding to the T4? Ya I get ringing in the ears really bad when I take cytomel and I feel sick and more tired after I take it. Natural thyroid is good but it feels like it has too much T3 in it for me so right now Im trying to combine it with my T4.
Here are some things you could try to help with your thyroid symptoms, eliminate gluten from your diet, take a multi vitamin, b vitamins, magnesium, omega 3’s, probiotic, check your adrenal cortisol level and find out if your levels are good and check your ferritin level and supplement if its low. Those are some things that have helped me a little, Im still not feeling my best though.

#3

Tony, thanks for your reply. I was taking 100mcg of Synthroid only. When my endo added Cytomel, 5mcg 2 x per day, he backed off my Synthroid to 88mcg. He also informed me that I need to give this new therapy 6-to-8 weeks before I can expect to notice any kind of improvement. All of this is fine except that I am feeling worse early on, and the side effects of the T3 are a bother. The increased lack of energy is what disturbs me the most. I’m scheduled to see my endo again at the end of August, and I don’t want to wait that long if these side effects don’t resolve or at least diminish.

Thanks for your suggestions.

#4

I have been through the Cytomel Hell and it took several months to finally be able to take it. I could not tolerate even 5 mcg. I would get symptoms of irritability, like PMS, also depression and suicidal thoughts after a few hours. Thankfully the thoughts would stop after about 12 hours of not taking a dose, but I could not take the Cytomel. Because I was so sick at the time with low thyroid I was so scared because I could barely get out of bed due to lack of energy and I could not tolerate any thyroid medication, synthetic or natural. I was about to give up on the Cytomel but I had no other choice. But with persistence and time I figured out what to do and succeeded. I now am taking the full dose and my life has turned around. My energy has come back. Hopefully this information can help you too.

But, it was hell at first. Here is what I did:
1. check iron status
2. check adrenal status
3. check if you have a reverse T3 problem

Both have to be optimized in order to accept the medication.
I got my adrenals tested (saliva testing only is accurate, not blood) and found I was very low in cortisol,so I started taking Hydrocortisone. Very often following a depleted adrenal system it takes weeks to months to get strong enough to take the Cytomel. Many doctors are not aware of this. Your adrenals have to have been medicated for awhile (if they are low) before attempting to start the Cytomel.

I took Iron bisglycinate (Blue Bonnet brand) this is the best absorbed brand because they use Albion chelated iron, it is the highest absorbed 18 mg day for one month only. My labs were low.

It took three full months of taking the Hydrocortisone before I could take the Cytomel. I started very slow, with 5mcg a day and increased to 25mcg after two weeks. I slowly increased to about 120 for a short time and then went down to 75, which is the stable dose now. Month by month my energy has slowly increased and now I am functional again.

This medication is a life saver but getting started is very difficult for many people. What's missing is the guidance on how to start it up. Unlike other medications where you can just start to take it full dose, this one you may have to even get the adrenals and iron status changed before it can be taken at all.

I got my guidance from the Yahoo Group http://health.groups.yahoo.com/group/RT3_T3/
and
http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

Also check
http://www.thyroid-rt3.com
This is the website for treatment by Cytomel medication for folks with reverse T3. They will tell you what tests will show if you have this.

These groups have details on what kind of iron testing and adrenal testing.

In any case, don't give up on the Cytomel, especially if you have a reverse T3 problem.
Hope this has helped and encouraged,
Sarah

#5

Sarah,

Great info! Thank you. Very helpful & encouraging.

I take Cytomel, actually a compounded generic. Haven't experienced the awful problems you have, but am struggling to get the proper dosage. After several years, my doses (5mcg, twice daily) are still low, too low I believe. Arguing with my doctor for proper tests & to use Armour. An uphill battle. I may have to pay for my own adrenal testing.

How often do you have cortisol tested using Hydrocortisone?

#6

Hi Gerri,
10 mcg of Cytomel daily is a negligible dose. Dosing is 75 - 125 mcg daily in divided doses. This is if you are taking T3 (Cytomel) only. This is for folks with high reverse T3 and/or autoimmune antibodies present (Hashimoto's).

Also, Cytomel's efficacy varies with the brand. If it is compounded it may not be strong like the brand name Cytomel. This difference in strength may be titrated out later if you find a dose that works.

Do you have high reverse T3 or Hashimoto's?
Are you only on Synthroid with the 10 mcg compounded T3?

As you probably know Saliva Adrenal testing is about $100 -140 depending on lab. No prescription is needed. Cortisol testing after a person has begun taking Hydrocortisone is at the discretion of the doctor and what type of testing he/she uses. (urine, blood, saliva). There has been some debate as to the best method for testing Cortisol levels after starting to take HC. Some people monitor amounts based on body temperature stability, (which I do not personally think is accurate, but that is just me) and some go with variations on what amounts are considered standard care. These ranges can be very inappropriate for a specific individual, though. Some people need quite a lot more than is considered "normal" care, especially if there is a hidden, perhaps systematic infection such as Epstein Barr, pathogens picked up from travelling, H pylori for example. Just a few examples that I have heard of. In any case there is wide variations in dosing of HC and it is not just standardized. I can point you to some more resources if you have an interest. Just let me know.

Take Care and hope you feel better soon.

Sarah

#7

Hi Sarah,

I'm taking liothyronine only, no Synthroid. Compounded because my first endo believed I needed that small a dose. I disagree. I have Hashimoto's. Wow, knew my dose was small, but not that miniscule!

Just had RT3 done & that wasn't easy.

Free T3 2.8 range 2.3-4.2 Previous 2.4
Free T4 0.94 range 0.65-1.52 Previous 1.13
Reverse T3 20 range 11-32

Not sure what the RT3/FT3 ratio is. The calculator I found doesn't list the measurements the lab used for RT3--ng/dl.

Your thoughts are much appreciated. I have a doctor's appt on Monday & am trying to present a good case for what I need.

#8

Hi Gerri,
What unit is the Free T3?

Just for kicks, this is a scholarly article that may be of interest regarding reverse T3.
http://f1.grp.yahoofs.com/v1/wFIHTwLehXjDGZjWYxYjROZCTIA7Ot0jwwaRRXnjmI43thcxfzVV52X3YApC3ag5czb-FcHFZrcGvu1obZI9MAzCu2OZVsVlRg/HUMAN%2BDORMANCY.pdf

#9

Free T3 and RT3

A healthy FT3/RT3 ratio is 20 or greater. Less than 20 is an indication of High reverse T3. This is treated by Cytomel only 75-125 mcg daily. No T4 is given as this will metabolize into more reverse T3.

FT3 pmol/L
RT3 pmol/L These results need to be changed so that the ratio is correct. Multiple FT3 by 1000 then divide the result by RT3.
Ex. FT3 5.4, RT3 567
(5.4 × 1000) ÷ 567 = 9.5
FT3 pmol/L
RT3 nmol/L These results will give the correct ratio. Divide FT3 by RT3.
Ex. FT3 5.9, RT3 0.38
5.9 ÷ 0.38 = 15.5
FT3 pg/mL
RT3 pg/mL These results need to be changed so that the ratio is correct. Multiple FT3 by 1000 then divide the result by RT3.
Ex. FT3 2.6, RT3 258
(2.6 × 1000) ÷ 258 = 10
FT3 pg/dL
RT3 ng/dL These results will give the correct ratio. Divide FT3 by RT3.
Ex. FT3 403, RT3 25
403 ÷ 25 = 16
FT3 pg/dL
RT3 pg/mL These results need to be changed so that the ratio is correct. Multiple FT3 by 10 then divide the result by RT3.
Ex. FT3 397, RT3 474
(397 × 10) ÷ 474 = 8.3
FT3 pg/mL
RT3 ng/dL These results need to be changed so that the ratio is correct. Multiple FT3 by 100 then divide the result by RT3.
Ex. FT3 2.9, RT3 23
(2.9 × 100) ÷ 23 = 12.6
FT3 pmol/L
RT3 ng/dL These results need to be changed so that the ratio is correct. Divide FT3 by 0.0154 then divide the result by RT3.
Ex. FT3 4.5, RT3 30.3
(4.5 ÷ 0.0154) ÷ 30.3 = 9.6

#10

The calculators were taken from a document in the Reverse T3 Yahoo group

#11

Free T3 is pg/ML. Thanks!

So, I need much higher T3, but what about that my T4 is also low?

#12

Greatly appreciate you taking the time to copy all that! My ratio is 9.09. Pitiful.

Clealy, I need a much higher T3 dose. But, then what's done about my low T4? Is T3 stabilized & then T4 added? My goal is Armour, or another natural product. I'll see about tests for iron & cortisol you mentioned that effect RT3.

Many thanks!

#13

Hi Gerri,
Yes, that ratio is quite low. Mine was 13 when I found out and I was so fatigued I could not function. I required naps, could not keep up with basic housework and could not work. What's most sad is that this started after the birth of my son in 2007 and the doctors were so uninformed. They let this basic thyroid problem go for nearly 5 years and during that time I struggled to take care of my baby and family.

I was even told by my woman gynecologist that my thyroid was fine and that I needed to wake up every mornaing, have some green tea and look out the window at the sun and great the day. There are many horror stories like this.

Your doctor doesn't know what he is doing. With a ratio that low you must feel horrible.

I would highly recommend http://www.thyroid-rt3.com
This is the website for treatment by Cytomel medication for folks with reverse T3.

When your ratio is low and you have the reverse T3 problem the only treatment is Cytomel ONLY treatment. You do not use T4. You do not use Armour or any other treatment that includes T4. This is because the T4 is the problem. T4 converts into reverse T3.

I was skeptical about using T3 only because I don't like to take medications for anything. I am very natural. But, the T3 from Cytomel is bio-identical. It is exactly the same hormone as produced in the body. But I thought I still wanted to go natural and someone gave me concerns about not getting all the other thryoid hormones without the Armour.

I tried the Armour, and I becme worse immediately I could not tolerate it. It was clear that it was not going to help.

Then I went to the Cytomel, supported my adrenals (which was a very big part for me to do in my case, it might not be so important for you), and then slowly worked up the Cytomel. I have gotten my life back and my energy level, 9 months after starting a decent dose is now 80-85 % of normal. So I can certainly excercise now for the first time in years.

So don't be scared of taking T3 only. There are lot's of success stories on the reverse T3 group.

Your doctor probably won't agree with this, as he is clearly outdated on his information if he will not give you even a liveable dose of T3 at this point.

Hope you feel better soon.
Sarah

#14

Hi Sarah,

Want to go on a rampage from stories like yours. Feeling like that after having a baby--so sorry. Don't know how you didn't collapse. Drink green tea & greet the day with a smile---arrrggh! Great medical advice.

I was hypothyroid for I don't even know how many years. My mother has Hashimoto's (takes Armour) & every female in my immediate & extended family is hypothyroid. Don't have to tell you that being tested annually for TSH was useless. I was repeatedly told I was borderline, don't worry, we'll keep an eye on it. It wasn't until I was diagnosed T1 & expressed concern about thyroid problems that I was tested for antibodies. Lo & behold, off the charts.

I strongly suspect my adrenals are a factor having been hypothyroid for many years. I'll pay for adrenal testing myself & for ferritin testing also, if I fail to convince my doctor for an Rx for labs. I live in a small, rural area. There are three endos within a 60 mile radius & they're awful.

Am going to demand a significantly higher T3 dose & ask for 25 mcg Cytomel. My doctor is going to freak. I went through hell just to get him to raise it .5 mcg from my previous dose when he insisted on Synthroid. The compounded liothyronine is expensive, has to be shipped & clearly does nothing at that tiny dose.

Can 25 mcg Cytomel be cut in half for split doses? The pharm site says once daily, but I've read two, 12-hour doses are more effective. I take liothyronine in two doses.

I'll check out the RT3 group. I'm very grateful for your guidance! Thank you.

#15

Hi Gerri,
Thanks for understanding, it certainly is so painful to have suffering, especially when doctors are involved.

Cynomel is a medication best taken in many divided doses throughout the day, I think they list times and doses on the Reverse T3 site. There is a reason for this and they explain it there. And yes it can be cut in half or quarters or the amount you need and spread out.

Dosing for Cytomel to treat high reverse T3 is between 75-125mcg daily. 25 would not be enough. Please see the protocol on the reverse T3 site if this interests you.

I too believe my being hypothyroid and left untreated for at least 15 years is a set up for adrenal failure. Wait and see is like saying to Type 2, wait and see for treatment until the pancreas burns out. Or how about the LADA's who are treated as Type 2's! So many doctors, so many mistaken science.

If your doctor is insisting on Synthroid when you have a reverse T3 ratio like you do he clearly has no understanding. Any additional T4 will convert into more reverse T3, contributing to your illness. At least that's what the literature says.

I am not a doctor but, this is information I have read from scientific studies and the information shared and listed on various groups. Ultimately I made my own decisions about my heath and obtained proper treatment and I no longer feel like "I am dying". That was because my levels were so low.

I am glad I can be of help, it helps me to feel better too, because I know at least my suffering wasn't all for nothing, if I can at least help some one else not suffer like I did, that would make it worth it.

Sarah

#16

Sarah,

Not sure where this reply will show up. After a certain number of replies, you can't reply in sequence.

I am so sorry for what you've been through. Infuriating doesn't begin to address it. Equally enraging that we have to do our own research & push hard to get what we need. Having a serious medical condition is enough without having to take a crash course in endocrinology & pharmaceuticals.

Really grateful for your kindness in sharing all the info. Feel quite lost. I hope you will feel free to call on me if I can return the favor with diabetes help. Diabetes is day at the beach compared to thyroid & adrenal problems.

I joined the RT3 group & posted my first question. No doubt, the first of many. Read on thyroid-rt3.com/dosing not to begin Cytomel without iron & adrenal tests. Site outlines how to begin dosing if using supplementation with T4. Doesn’t mention about how to begin if you’re already taking only T3 at very low doses. Hoping I can start increasing right away. Do you know?

Many thanks again.