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Old 09-23-2005, 08:34 AM   #1
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Talking T3 (Cytomel)... my experience!

I begain taking T3 today and will use this thread to record my experiences.

First a short history. I am 54 years old and have had symptoms for 20 years. My earliest symptoms began following two successive surgeries in 1984. At that time my main problems were feeling unwell, with flu or allergy-like symptoms, excessive daytime sleepiness, shortness of breath, rapid heart rate and fatique.

Each year I became worse, with new symptoms starting with each illness or major stress. Each year I thought for sure that I couldn't get any worse only to be proven wrong. I have been evaluated by specialists several times (some more than once). Always being told that no cause could be found.

This past June I came down with bronchitis (which wasn't that bad) but as I was getting better my health suddenly took a dramatic nose-dive. For the first time I cannot safely walk and can stand for just a couple of minutes at a time. I stumble around the house and am to weak to walk up or down steps without help. The pain is widespread, mostly around tendons, ligaments and joints. All this added to my existing symptoms of inability to remember or figure out anything and fatigue. (My problems of excessive daytime sleepiness and reduced level of alertness responded well to treatment with 8mg prednisone a day for adrenal involvement.) I have many other symptoms but to be as brief as possible have focused on the most disturbing.

OK... this brings me to today. My doctor agreed that I may benefit from large doses of T3 (more on that later) . So, this morning I took my first dose of 75mcg of Cytomel (T3). I have been recording my bood pressure, pulse and temperature regularly and will continue this.

I will post my daily or weekly results here. I appreciate any and all comments and will try to respond to all questions. I hope that these posts will give me a written record of my progress (if any) and offer hope to everyone who reads them.

Hope I didn't make this first post to long.

Bye for now.

uncoordinated
(this name because I can't walk and I drop everthing I pick up.)

 
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Old 09-23-2005, 08:58 AM   #2
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Re: T3 (Cytomel)... my experience!

Uncoordinated, welcome to the board. This will be a very interesting thread to me, I am hypothyroid and take 112mcg of synthroid.

Are you hypo or hyper or either? Do you take synthetic thyroid hormone or are you just taking the cytomel? Are your Free T levels normal or low?

I have suggested to my endocrinologist about taking cytomel but she insists I don't need it. My Free T's are good. Thanks for taking the time to keep us informed with how this is working for you. I also take prednisone for joint pain, started with 5mgs and am now on 4mgs. It seems to help quite a bit, but still have muscle pain, some joint pain, and overwhelming fatigue.

Glojer

Last edited by Glojer; 09-28-2005 at 12:15 PM.

 
Old 09-23-2005, 03:21 PM   #3
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Re: T3 (Cytomel)... my experience!

Glojer,

According to my doctor my thyroid tested normally (TSH-2.574, free T3-2.89, free T4 1.10). Because of my symptoms my doctor had me try small doses of Armour (15mg and 30mg). Each time I immediately got much worse and so couldn't continue treatment.

Interestingly, my symptoms are those of hypo AND hyperthyroid. This paradox and my "normal" lab values have left me feeling like I might die before someone would figure out what was wrong with me.

I must tell you and everyone else for whom this may apply, according to Dr. J. C. Lowe, the only studies in which fibromyalgia and chronic fatigue syndrome sufferers have achieved full and lasting recovery involved thyroid hormone therapy.

He says that these "new" diseases began developing in the 1970's corresponding to the introduction of the new TSH test and Endocrinologists (Endos) then cutting thyroid hormone dosages in half for the purpose of raising TSH levels to "normal". Before the 1970's doctors determined the proper dose of thyroid hormone based on a patient's symptoms, so patients didn't go on to develop these illnesses.

It is unlikely an Endo will do anything other than try to keep TSH at a certain level. Comments on this very site tell over and over how a patient's request for a higher dose or different formulation was met with arogance, disdain and even anger.

Dr. Lowe states that for some patients TSH-suppressive doseages are harmless and necessary for their health and well-being.

All this info and more can be found on his web site. He references research papers and various studies extensively in his writting and so if you like, you can do a search and often find and read that referenced material.

Important: Many patients need only switch from T4 to Armour or a synthetic T4/T3 combination. Some may need to add more T3 to feel well, some may need less. Some may do better on only T3 while some will need large doses of T3 because of thyroid hormone resistance at the cellular level.

Glojer... I hope this helps because your symptoms indicate you may be undertreated. It might be best to find a doctor who will not be so rigid in his beliefs and who is willing to look at the newest studies or research (probably not an Endo). I purchased Dr. Lowe's book on Metabolic Health and sent it to my doctor (express mail to get her attention) about one week before my appointment. I had highlighted and flagged the parts that I felt applied to me. This led to the treatment I am getting now. She is a general practioner not an Endo or other specialist.

Oh... by the way I've had no negative reaction to the T3 at all. My normally rapid heart rate normalized to 82 beats/min, I've seen a huge reduction in pain, and better cognitive funtion. But it didn't last all day. I think it takes a few days or more for maximum results and my dose will be adjected every two weeks until all symptoms are resolved or I show signs of toxicity.

Best wishes
uncoordinatd

 
Old 09-24-2005, 05:04 PM   #4
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Re: T3 (Cytomel)... my experience!

Thanks for the info. Yes I know what you mean by the Endo not wanting to go outside the standard guidelines. I believe she is a good doc and really knows her business, but I also believe she is pretty standard in her training and beliefs. I will be seeing a new rheumie in Nov. After that will maybe look into a doc my daughter in law has seen who is a believer in cytomel or T3 hormone. Right now I have other health issues I have to pursue and my husband has regular oncology appt.s we cannot miss.

It is interesting that your Tsh and free t's were normal. My Tsh was over 5 and even with the 112mcg of synthroid I am only down to 2.47 free t's are in the upper 70% of the range. I will read some on Dr. Lowe, don't understand the part about Endo's cutting dosage in half for new guidelines, I thought the new guidelines were lower tsh which would mean an increase in dosage. I guess unless you were hyper then you would need less.

Such a shame we have to fight so hard for a treatment that will benefit our particular symptoms. I will say I have come a long way though, just to get the dosage of synthroid and to get even a medicine like prednisone that does help. Please keep us posted I do find this very interesting. Thanks

Glojer

Last edited by Glojer; 09-24-2005 at 05:11 PM.

 
Old 09-25-2005, 01:36 PM   #5
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Re: T3 (Cytomel)... Day 2 & 3

UPDATE and reply

Glojer...
Sounds like you are dealing with a lot right now. I know how hard that can be when feeling bad and exhausted. Best wishes for you and your husband!

I went back and read the part about the Endo's cutting dosage in half for new guidelines. I will paraphrase below:

In the early 70's and corresponding to the new TSH test, the Endo's reduced the dosages of T4 from 200-400mcg down to 100-200mcg. The rheumatologists unquestioningly accepted this and ruled out thyroid deficiency as the cause of their patient's widespread pain because the patient's TSH was within the normal range (as defined by the Endos) . This, despite the fact that chronic widespread pain is a classic symptom of hypothyroidism.

Glojer... I hope this helps. Maybe you won't need the Rheumie if you get the right thyroid treatment??? This is my opinion only based on my research but maybe an increase in T4 and the addition of some T3 will improve your health greatly. After all, insufficient tyroid hormone affects every cell in the body.

I also had a hard time getting prednisone. At first my doctor wasn't sure she agreed with me that I had adrenal insufficency and started me out on a tiny dose. It took 6 months to get to 8mg. She could see that I did better with each successive dose increase and never had signs of toxicity. Dr. Lowe says that it is common for adrenal function to be decreased with insufficient thyroid hormone. I didn't know that at the time. My symptoms that improved with presnisone are 1) no more daytime sleepiness 2) abilty to wake up normally in the morning 3) less fatigue 4) ability to maintain alertness.

Today is Day 3 of T3 treatment.

Yesterday my pulse rate only dropped for a short time and then went back to its normally rapid state. I wonder if this is because there is a cumulative effect and that dose (75mcg) will be too high. Or because my resistance increases with each successive does. This did happen during my "test". I started with 5mcg which helped the first day but not the second. The same happed with 10, 20, 30, and 50mcg.

Today I decided to go back to 50 instead of staying at 75 but the same thing happened??? I can't go up until my Dr. OK's it.

Yesterday my feet stayed swollen, they have been that way for several weeks. This morning however, they had gone down significantly.

Still no pain. Only a little discomfort in my right foot and right hip. Interestingly these were the first areas to start hurting. I also had a headache but that is probably because I'm trying to catch-up with some paperwork.

Still feel weak.

The worst thing that has happend is that the 4mg Prednisone I have been taken since June is not effective. Yesterday I ended up sleeping most of the day. Today I'll start adjusting that upward but I can't go above 8mg without doctor's permission.

Thats all for now. I know this was long but I don't want to leave out anything that may help someone.

Bye now.
Uncoordinated

PS Wish there was a spelling checker (brain still not working!)

 
Old 09-28-2005, 11:29 AM   #6
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Talking Re: T3 (Cytomel)... my experience!

Day 6 Update

I've been doing some reading since I got my book back from the doctor. I found out that it takes from 3-7 days to know how effective a given dose of T3 is. So based on this info and the problem I had with the 75mcg my doctor started me at, I decided to go back to 25mcg and wait one week before making adjustments. So, I will make updates on my treatment experience to this thread once a week and post other info or answer questions as warranted.

As far as how I'm doing now... much better than I was before I started treatment. I am no longer freezing all the time. My digestive problems have suddenly ended. Most of the pain is gone and I can sleep through the night!!!!!! I also believe there has been an improvement in my cognitive function because I can remember more of what I read without having to read the same page over an over.

However, I'm stll very weak, have headaches, have difficulty walking and still have a little swelling remaining in my feet.

I still believe I'm on the right track and would encourage everyone who reads this to check out Dr. Lowes website. There is an abundance of info there about proven treatments for the overlaping conditions of fibromyalgia, thyroid and chronic fatigue.

Best wishes
uncoordinated

 
Old 09-28-2005, 12:30 PM   #7
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Re: T3 (Cytomel)... my experience!

Uncoordinated, thanks for the updates. I will look forward to your posts on how things are going each week.

I had to take a few days of my 5mgs. prednisone because I ran out of the 1mgs. which I take 4mgs. a day. Anyway, when I went back to the 5mgs. I decided to take it a few days to see if it improved my health over the 4mgs. It is amazing to me how 1 little mg. of a drug can make a noticable difference.

So I am sure that the cytomel will help you, and it sounds like starting low and building slow is the right way to go. Until I reached 112mg of synthroid I did not feel like I was at the dose I really needed. Adding the prednisone and kicking in the adrenals really gave me the boost I needed. Please keep us posted on how the cytomel is doing.

Thanks
Glojer

 
Old 09-29-2005, 10:52 AM   #8
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Re: T3 (Cytomel)... my experience!

Hello,

I have a question. Is this in any way related to something called Wilson's Temperature Syndrome? The treatment sounds similar, I believe he uses a timed release T3.

Thanks,
WW

 
Old 09-29-2005, 11:30 AM   #9
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Talking Response to WW

No...
Wilson's treatment is widely discredited and not independently verified. I could find no evidence that his treatment works.

Dr. Lowes protocol depends on whether you are hypothyroid or thyroid hormone resistant (THR). If you are hypothyroid with symptoms of fibromylaga or chronic fatige, he says that you need a dose of a T4/T3 hormone
over 200mcg to get well. Hypothyroidism may not show up on lab tests because the norms established by the Endo's simply do no apply to everyone because of individual differences in cellular resistance. For those who get worse on the higher dose of Armour, they need a single large dose of T3 daily (not timed-release). This dose would be harmful for healthy people but necessary for others to overcome the cellular resistance.

He discusses the differences between his and Wilson's beliefs on his site. If you have trouble find his site let me know and I'll give you more help finding it. There is a lot of info, a good place to start would be the site map.

If you cannot find a doctor to prescribe the doses you need to get well you can buy Armour-like hormone over the internet (about $16 for 90 135mg tabs). If you want to follow the protocol in his book he says he will provide assistance via e-mail. I haven't tried this yet but if I do I'll post my experience.

Hope this helps
Uncoordinated

p.s. I'll be making another post later today because of a wierd experience this morning.

 
Old 09-29-2005, 12:52 PM   #10
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Re: T3 (Cytomel)... my experience!

Thaank you for clearing that up. It was very informative and helpful.

WW

 
Old 09-29-2005, 08:58 PM   #11
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Update - day 7


This morning something very strange happened. My left leg was totally normal. I could lift my leg with ease. My right leg was still very weak and unresponsive. I could only lift it 2 or 3 inches off the ground.

I took my daily dose of T3 at about 11:30am. After about one hour my right leg began to improve. Soon I was walking almost normally.

I enjoyed that for awhile but then this evening both legs returned to their original status and again I was hobbling around the house.

It's amazing that T3 can make the difference of whether or not I can walk.

Until next time
uncoordinated


 
Old 09-30-2005, 09:51 AM   #12
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Re: T3 (Cytomel)... my experience!

Uncoordinated, so glad the cytomel seems to be working. I have heard that it wears off quickly and that seems to be what may have happen to you as the day wore on. Keep us posted, thanks.

Glojer

 
Old 09-30-2005, 01:56 PM   #13
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Reply

Glojer...

I've wanted to respond to your post about how 1 extra mg of prednisone could make such a difference. Well, I've finally got a minute.

My doctor has been very uncomfortable because she considers my dose of 8mg daily to much. The best information on the safe use of cortisol (I can't remember the author's name. It may be Jefferies) says that doses over 4mg are adrenal suppressive and therefore dangerous.

The position I've taken with my doctor (and I guess it makes sense because she gives me what I want), is that I do not benefit as much from the smaller doses and I have no signs of toxicity -- easy bruising, etc...

Recently I've read that the adrenals are affected by inadequate thyroid hormone and that most all doctors prescribe to little because they adjust the doseage based on TSH instead of symptoms.

If this is what is causing the sub-optimal performance of the adrenals then their function will improve when the replacement of T4/T3 is increased enough to eliminate the fibromylagia and chronic fatigue symptoms.

I'm hoping this will happen for me so I can discontinue the prednisone. After all, it is not the safest drug in the world by any means.

I appreciate your feedback. Thanks!

Bye now
uncoordinated


 
Old 10-01-2005, 09:45 AM   #14
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Re: T3 (Cytomel)... my experience!

Thanks uncoordinated, my rhuemie says the same thing about prednisone. If it is under 5mgs. he is not worried about the side effects. I do have bruising but have always bruised easy, it just seems I have a few more bruises these days. I too have read about higher doses of prednisone suppressing the adrenals, but I think that may be part of the problem. I even feel better when I increase my synthroid on my own (just taking more) it always gives me a boost. Keep me posted, I will be seeing the old rhuemie and the new one in the next month so maybe will have new info then.

Thanks

Glojer

 
Old 10-01-2005, 08:16 PM   #15
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Re: T3 (Cytomel)... my experience!

Hi - I Have Addisons Disease Which Is The Extreme Form Of Adrenal Insufficiency - I Also Have Hypothyroid And Fibro. I Know That When You Have Adrenal Problems, You Should Not Take T3 Medications Because Of How This Interacts With The Adrenals And How Our Bodies Use Cortisol. I Am On Hc -- Hydrocortisone -- And Whenever I Take T3, Cytomel, I Have To Incrrease My Hc. So Specialist Will Not Put Patients With Adrenal Issues On Cytomel. I Just Wanted To Mention This Here - Hope It Helps Someone.

 
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