Cytomel/T3 only?

[Sue]

Anyone on only Cytomel? Both my T3 and T4 tested as borderline low, and my TSH was midrange, but higher than my doctor preferred. While the cytomel (5-10 mcg) should help my symptoms, won't the T4 remain low and just keep the TSH coming, which creates more T4, of which I don't seem to keep anyways? Also, does anyone know if it's "bad" to maintain a low T4, or as long as I have adequate T3, I'm ok?

[clara]

I had my Thyroid removed 3 weeks ago and was put on cytomel immediately (50 mg). That's the only thyroid drug i'm on.

[monica]

My free t3 numbers came back on the low side of normal so my doctor started me on a low dose of Cytomel . I am to increase it very gradually.
T4 is converted into T3 once it is released from your thyroid gland. T3 is acutally the active thryoid hormone- not T4. since my values are still in the normal range by standard values, I am stating with only 5mcg and increasing to 10 next week.

[Jessabelle]

I am on only Cytomel, 45 mcg compounded with a time release agent. Took lower doses for a while but finally began testing at "normal" TSH levels on this dose. My doc wanted me to try T4 Type meds.. but I didn't feel good at all on them, infact seemed to have quite a depressing effect overall, so I asked to try out this course, and she has bean supportive. It isn't "bad" to maintain a low T4 IF you are having plenty of T3... too much T4 can have negative effects... T4 is turned into T3, in the tissues of the body.. BUT too much of it sort of clogs up the process, thus you don't get enough T3, hence hypothyroid symptoms. Check out Wilsons Thyroid Syndrome website for a very thorough explanation.

[Olivier]

Humm Wilson Syndrome: been there, done that, bought the T-shirt.

If you ask me, Wilson Syndrome is plain old hypothyroid. The symptoms he describes is hypothyroid symptoms or what some doctors call fybromylagia symptoms.

When very hypo-metabolic, the best way to go is:

1) First and foremost a good dose of Sustained Release T3 to reactivate the metabolic activity in the shortest time possible so that the patient isn't kept in pain and suffering for too long.

2) Then, if the patient can tolerate it, a T4 med like Synthroid. Some side-effects are to be expected in the first weeks of the increase. Thats "sort-of" normal. Takes a while for the T4 to kick-in.

3) Don't mind too much the TSH, it can get pretty low. The important is the symptoms.

T3 can be raised by 6.25 mcg each week or each 9 days. T4 cannot be raised more than 25 mcg each 6 to 8 weeks (VERY LOOOONG!)

If your thyroid has been removed, 50 mcg of Cytomel isn't nearly enough. You need WAY more. And I mean *WAY* more. People with unremoved thyroid glands on other forum report a base replacement dosage of (average) 200 mcg T4 and 50 mcg T3 -- it can be higher than this.

To answer your question Sue, if Free T4 levels are too low, you could have a hard time recuperating from intense exercise or sport because this sort of activity will deplete the T3 very fast. Remember, T3 has a very short half-life in the blood stream. So, T4 acts as a reserve, of sorts.

Keep raising.

[Olivier]

Olivier wrote:

Humm Wilson Syndrome: been there, done that, bought the T-shirt.
If you ask me, Wilson Syndrome is plain old hypothyroid. The symptoms he describes is hypothyroid symptoms or what some doctors call fybromylagia symptoms.

Humm there might be something to Wilson's Syndrome. I might have talked a little to fast here. I'm not sure if I tolerate Synthroid so well... the more I raise the T4 the more I seem prone to depressive states... pretty weird. I know FOR SURE that any T4 raise is very hard for me. I seemed stable on it the last week or so but I then recently changed the way I was taking Synthroid from an empty stomach to taking it with breakfast.

I'm now back to taking it on an empty stomach. It changes the absorption of the med. It's been 5 weeks now since the start of the raise. I'll wait the full 8 weeks of dosage raise and I'll get back to you on it. If I feel like crap after 8 weeks I'll consider dropping the Synthroid and going on an T3 only protocol.

I'm now at 100 mcg T4, 56 mcg Sustained Release T3 and 25 mcg Cytomel (T3).

We'll see... I'll keep you folks posted!

[Olivier]

Update.

From what I can tell, I'm ok with Synthroid but I am experiencing first hand that stability is the key.

A view shared by many on other forums: Wilson Temperature Syndrome is just plain old hypo.

The thing wacky about Wilson's approach is that 1) he raises the T3 level each day! That is quite fast. Not everybody can tolerate such a fast raise of metabolically very potent T3 hormone; 2) he weans people off their meds in cycles: if these guys are hypo and with Hashi's they're gonna be on a pretty impressive roller coaster ride mood-wise, if you catch my drift and, he weans them off completely afterwards. If you are hypo, you can't go without thyroid med.

However, what Wilson did identify is that hypothyroid patients, especially those with Hashi's feel a whole lot better with some T3 in the mix.

[julie]

never felt so bad, had my second op 9 weeks ago for thyroid cancer, had full thyroidectomy, but my god i feel so ill, im taking 60 mcg per day of liothyronine, visited gp for blood results to be told my t3 levels are in the 70.2 so i must be overactive she said, told to take only 40 mcgs per day, at this rate i will make medical history to be the only woman in the world to survive without a thyroid gland or replacement, i thougt it was 1 mcg per pound of body wieght i should be on about 165 mcgs per day as i dont wiegh 40 lbs what do you think icant get any answers x havin radio active iodine in a few weeks

[Robin]

I take T3 only. I'm up to 80 mcg and it doesn't seem to hae much effect on me. I'm starting to wonder if something else is blocking absorption. The more I take it almost seems the worse I feel but I don't have hyper symptoms.

Anybody else taking high doses of T3 only?

[Alice]

I take Cytomel T3 only. I had my second op 8 weeks ago for thyroid cancer. Im taking 50 mcg a day and feel like crap. At first I felt good, but now I think that my body has adjusted to the meds. Will see my doctor this week.

Is it dangerous NOT to take T4? I had problems with my calcium levels so the doctor just put me on T3.

[Wendy]

Robin wrote:

I take T3 only. I'm up to 80 mcg and it doesn't seem to hae much effect on me. I'm starting to wonder if something else is blocking absorption. The more I take it almost seems the worse I feel but I don't have hyper symptoms.
Anybody else taking high doses of T3 only?

I am a big fan of www.stopthetyroidmaddness.com . It seems that if you feel worse from raising your thyroid meds, it's not your thyroid, but your adrenal glands. You must get your adrenals up and running before you address the thyroid. I've been to many doctors asking for help with my adrenals. All the traditional test say my cortisol levels are low normal. No one will give me any physicalological (sp) replacement does of cortisol. Endos and internist are afraid of cortisol. Perhaps you have to address the adrenals first. It's hard to find a doctor who will listen.

[Renee]

Wendy wrote:

<quoted text>
I am a big fan of www.stopthetyroidmaddness.com . It seems that if you feel worse from raising your thyroid meds, it's not your thyroid, but your adrenal glands. You must get your adrenals up and running before you address the thyroid. I've been to many doctors asking for help with my adrenals. All the traditional test say my cortisol levels are low normal. No one will give me any physicalological (sp) replacement does of cortisol. Endos and internist are afraid of cortisol. Perhaps you have to address the adrenals first. It's hard to find a doctor who will listen.

I can sympathize! I finally hit the jackpot on my FOURTH doctor. He's an MD (Internal Med) and can think outside the box of regimented medical protocol. I have physical evidence that I have low cortisol by testing through saliva and blood. Even the insert on thyroid meds cautions use before addressing adrenal issues. I 'crashed' twice (too much stimulation using thyroid meds without adrenal support) until I found Dr. Burton. He took one look at my labs and said: "You need Cortef for your adrenals - that's why your thyroid meds overstimulate you." Hello! So don't give up and doctor shop until you find the right one. Last comment - I have Hashimoto's and Hypo and I've been on Synthroid, Armour, Levoxyl, and Westhroid. I cannot tolerate anything with T4 in it (heart palipitations) as it builds up in my body without my thyroid processing it. This is called being "thyroid hormone resistant". MOST endocrinologists refuse to acknowledge this and go ONLY by bloodwork. My new doctor didn't even order more bloodwork as he's going on my symptoms, my body temp, and how I feel. Refreshing! I'm now on Cytomel (T3) and working my way up to the correct dosage for me, as well as Cortef 20 mg./day. I'm looking forward to feeling great! Again - don't take no for an answer, do your research, and keep looking for someone to listen to YOU. It's your life and your body ;)

[Jim]

Renee wrote:

<quoted text>
I can sympathize! I finally hit the jackpot on my FOURTH doctor. He's an MD (Internal Med) and can think outside the box of regimented medical protocol. I have physical evidence that I have low cortisol by testing through saliva and blood. Even the insert on thyroid meds cautions use before addressing adrenal issues. I 'crashed' twice (too much stimulation using thyroid meds without adrenal support) until I found Dr. Burton. He took one look at my labs and said: "You need Cortef for your adrenals - that's why your thyroid meds overstimulate you." Hello! So don't give up and doctor shop until you find the right one. Last comment - I have Hashimoto's and Hypo and I've been on Synthroid, Armour, Levoxyl, and Westhroid. I cannot tolerate anything with T4 in it (heart palipitations) as it builds up in my body without my thyroid processing it. This is called being "thyroid hormone resistant". MOST endocrinologists refuse to acknowledge this and go ONLY by bloodwork. My new doctor didn't even order more bloodwork as he's going on my symptoms, my body temp, and how I feel. Refreshing! I'm now on Cytomel (T3) and working my way up to the correct dosage for me, as well as Cortef 20 mg./day. I'm looking forward to feeling great! Again - don't take no for an answer, do your research, and keep looking for someone to listen to YOU. It's your life and your body ;)

I've been dealing with this for 3 years now. Finally all has been figured out. At least I hope so. It started out with Growth Hormone Deficiency. 0.4mg per day made me feel better for about six months. Then I crashed. My thyroid labs were low normal so my endo put me on Armour T3/T4 and it made me worse. I was then put on Cytomel 50ug. Made me feel a little better, but still felt hypothyroid. I went to 100ug per day and the labs showed extremely suppressed TSH and T4 and very high T3. Hyperthyroid labs with hypothyroid symptoms. Diagnosed General Thyroid Hormone Resistance. Endo OK'd increase titration up to 250ug or overstimulation. At 150ug I crashed again. Endo performed ACTH stimulation test and diagnos came back with Secondary Hypoadrenalism. This one almost killed me. Prescribed 0.5mg Dexamethasone 2X a day. Instant relief from the first pill. Improving every day. My point is this is complicated stuff and if you don't find an endo that will work with you, find another one. These deficiencies, for whatever the reason you have them, can and will kill you if you don't get the right treatments. To get the right treatment, you need the right doctor.

[cheryl]

Renee--would you mind telling me what your symptoms were when you sw that great MD? I suspect my cortisol is off too. I am on cytomel and it is not enough. Thanks!
[e-mail]

Renee wrote:

<quoted text>
I can sympathize! I finally hit the jackpot on my FOURTH doctor. He's an MD (Internal Med) and can think outside the box of regimented medical protocol. I have physical evidence that I have low cortisol by testing through saliva and blood. Even the insert on thyroid meds cautions use before addressing adrenal issues. I 'crashed' twice (too much stimulation using thyroid meds without adrenal support) until I found Dr. Burton. He took one look at my labs and said: "You need Cortef for your adrenals - that's why your thyroid meds overstimulate you." Hello! So don't give up and doctor shop until you find the right one. Last comment - I have Hashimoto's and Hypo and I've been on Synthroid, Armour, Levoxyl, and Westhroid. I cannot tolerate anything with T4 in it (heart palipitations) as it builds up in my body without my thyroid processing it. This is called being "thyroid hormone resistant". MOST endocrinologists refuse to acknowledge this and go ONLY by bloodwork. My new doctor didn't even order more bloodwork as he's going on my symptoms, my body temp, and how I feel. Refreshing! I'm now on Cytomel (T3) and working my way up to the correct dosage for me, as well as Cortef 20 mg./day. I'm looking forward to feeling great! Again - don't take no for an answer, do your research, and keep looking for someone to listen to YOU. It's your life and your body ;)

[Christine]

I just had a total thyroidectomy last week. Awaiting the pathology still. I'm on 12.5 mcg cytomel 2x a day and that's it. I'm having random periodic rapid heart rate accompanied by a feeling of difficulty breathing and dizziness. I was on 12.5 mcg 3x a day but cut back to two times b/c of rapid heart rate but it's not getting better. In fact today it's worse than it has been. Also seeing the posts about adrenal gland send up a flag for me b/c I've had my left adrenal gland removed 12 years ago. Does low adrenal funciton only have an effect on the T4 or would that affect the T3 as well? When you say "crashed" what do you mean? I hate these symptoms..I'm nervous. Any advice? Thanks

[Renee]

cheryl wrote:

Renee--would you mind telling me what your symptoms were when you sw that great MD? I suspect my cortisol is off too. I am on cytomel and it is not enough. Thanks!
[e-mail]
<quoted text>

When your cortisol is low and that issue is not addressed while also on thyroid meds, you start having symptoms of being hyper, i.e., heart palipatations or pounding, feeling anxious yet completely exhaustion, etc. And although I was experiencing these symptoms, my body temp, heart rate, and BP were all low - as indicated in being hypothyroid. Your adrenals cannot support the stimulation that the thyroid meds are giving your metabolism. I had a VERY difficult time getting out of a chair due to the shakiness and exhaution, let alone dragging myself to work. Being put on Cortef helped bring my cortisol level up to deal with the increased activity and stimulation of my thyroid. I am currently weaning off it because as the Cytomel does it's job, the demand on the adrenals is less and my body is more able to meet the demand. I was on 5 mg/4x day and am down to 7.5 mg./day. Good luck in finding someone to listen to you!! ReneeWhen your cortisol is low and that issue is not addressed while also on thyroid meds, you start having symptoms of being hyper, i.e., heart palipatations or pounding, feeling anxious yet completely exhaustion, etc. And although I was experiencing these symptoms, my body temp, heart rate, and BP were all low - as indicated in being hypothyroid. Your adrenals cannot support the stimulation that the thyroid meds are giving your metabolism. I had a VERY difficult time getting out of a chair due to the shakiness and exhaution, let alone dragging myself to work. Being put on Cortef helped bring my cortisol level up to deal with the increased activity and stimulation of my thyroid. I am currently weaning off it because as the Cytomel does it's job, the demand on the adrenals is less and my body is more able to meet the demand. I was on 5 mg/4x day and am down to 7.5 mg./day. Good luck in finding someone to listen to you!! Renee

[Lara]

How long is T3 in your system? I need to get my thyroid tested againg by a different doctor and want to make sure it's completely out so I can get accurate test results.

[teresa]

hi all im on t3 only and have adrenal fatigue so im taking isocort im only on 7.5mcg and feel like i cant tolerate it much now,im on 2,2,1 pellets does anybody out there have adrenal problems while tryin to up t3?i have high reverse t3 thats why the protocol trhanks

[teresa]

renee-why did you wean off cytomel?or was cortef?how are doin now?

[Kathy A]

Jim wrote:

<quoted text>
Prescribed 0.5mg Dexamethasone 2X a day. Instant relief from the first pill. Improving every day. My point is this is complicated stuff and if you don't find an endo that will work with you, find another one. These deficiencies, for whatever the reason you have them, can and will kill you if you don't get the right treatments. To get the right treatment, you need the right doctor.

Hi Jim,
I'm looking at your post from July 07 (it's now Jan 08) and I'm hoping you're still reading this forum.

I'm wondering what ENDO you saw that you had good luck with?

I'm in the Placerville, CA area, so might be able to get to whoever you found to be good.

I can't take Synthroid/T4 after many years on it - due to an allergic reaction that I now get. So I've been put on T3 only.

I'm currently on 50 mcg/day, but am very tired, cold, etc. Just to show how uninformed doctors seem to be, mine just has me taking 1 50mcg pill/day. My understanding is that it works better to spread it out...

Very frustrated with all the doctors I've seen in this area, and would love to find a good one.

Thanks for any info you can give.

Kathy