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Old 11-09-2006, 04:32 PM   #1
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ErinBeth! Midwest! Need an opinion.

ErinBeth and Midwest. This will probably get lengthy, sorry.

You both have indicated that you have read several of my posts in the past, so I am hoping you remember some of my history. I have been hypo, due to right lobectomy, for 4 years. Like ErinBeth's posts, I have done pretty well on T4 (synthroid), but have had some lingering hypo symptoms. Unlike Midwest though... I am a TSH watcher and really believe for me that it is a very good indicator (not the only indicator, but a good one) of how my metabolism is running. TSH for me is best around 1 - 1.2ish, or I get awful acid reflux when it's lower.

My endo. believes in using any thyroid replacement medication that works, including, Armour, cytomel, thyrolar, as well as the common T4 meds. I hope you remember my issues with T3 in the past, including a scary visit to the hospital when I took Armour. For the sake of brevity, I'll just say that I've had the devil of a time getting supplemental T3 in me in the past, and after a while, finally came to the conclusion that it's just not right for me.

Fast forward to this past Tuesday. Last week I had my blood work done in anticipation for my Endo. 6 month visit on Tuesday of this week. I have had some tiredness, achey joints, minor hair loss, and dry skin, but nothing that stops me from my normal activities. At my appointment with the Endo. he discussed my labs. I'm at 1.4 TSH, that's ok with me. But my FT3, as he put it--is in the toilet! It came in at 2.0 on a range of 2.4-4.3, thus not only am I low, but I'm not even in range! He gave me a perscription for the very lowest dose of cytomel (5 mcg) and urged me to take it only once a day. He left the decision up to me though, and said if I was uncomfortable because of my past experiences I didn't have to take it. He feels it's really important to get my T3 up a bit, at least to the low end of the range and then go from there.

Since it's been about a year since I had so many problems with T3 previously, he really wants me to try again. His theory is to try the very lowest dosage, thus my cells can use it all since they need it so bad, and hopefully, without anything being left over floating around my system to cause me problems. He feels this will give me a better T4/T3 ratio to lower the possibility of difficulties adjusting to the T3. Given my past history with T3, I think that's a pretty good theory to attempt to get some T3 in me.

How I would love to get the cytomel, a low dose of Armour, or ANYTHING with a bit of T3 in me! I started taking the cytomel when I got home from my endo. visit on Tuesday, and by that evening I was edgy with tremors inside. I ignored it and just went on with my normal activities as I really do want this treatment to work. Yesterday I took it in the morning, about 30 minutes after my regular 100 mcg of synthroid, I quickly became really nervous and jumpy. Today I woke up very dizzy, ears ringing, light headed (you know when your vision gets fuzzy and sort of fades in and out), edgy, and mild heart palps. I took my synthroid and cytomel anyway (30 mins apart again) and went to work. Throughout the day the ears ringing and heart palps have subsided (thank heavens) but now I am so very fatigued and the dizziness has remained.

Anyway I really want both of your opinions on this. Erinbeth, because her treatment experiences with T4 only has pretty much mirrored mine, and has had her own adjustment issues with meds changes. Midwest, because she is the board guru on T3. Or anybody else who can give me some insight! I really, really want this to work. One would think that with my FT3 testing below the range, my body would just suck it in and be dancing a jig just to get it! Why, oh why, does my body not seem to want T3 when it so obviously needs it?

I am aware that with meds changes there are adjustments to be made, and it takes a little while. Last time I tried for armour about 8 weeks, getting sicker and sicker and finally went to the hospital. Then cytomel/synthroid for a few weeks without success.

Any tips on how I can make this work. I don't think I'm just being whimpy, but last time I did this, each day got progressively worse. I want to avoid that if I can this time. The cytomel pilll is so tiny I cannot break if in half to take half doses AM and PM. When I tried to break it, it just crumbled.

I'd love both of your opinions, and anyone else's who can help me. Thanks for your help and support!

 
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Old 11-09-2006, 08:42 PM   #2
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Re: ErinBeth! Midwest! Need an opinion.




When I started reading your post and began to realize your FT3 lab result is low, that the doc wants to try T3 again, I was thinking two things:


1. Your body has had a year on the T4 med and has surely had time to convert T4 to T3 if it will. I have thought sometimes people don't give their bodies enough time to start doing that.

2. I was hoping you would have an easier time adjusting this time since you've been on the T4 for awhile.


Sorry to hear it's starting out rough. I'm not sure I can be much help since I have not needed to do anything more than T4. Not yet, anyway.

I think, if I were you, I would want the doc to weigh in on any reactions I had during such a change in medication. I would want him to make clear to me what sorts of symptoms could be expected during such an adjustment and which might be cause for alarm. I have had some dizziness and lightheadedness while leveling. For me some of that didn't seem to be a danger signal, but I can't say that or your other symptoms don't raise a flag for you. If it were me having heart palps, I think I would be calling in (we have a 24-hour emergency nurse line to call) to get a medical opinion. I wouldn't take chances with my heart.

What does a 5mcg Cytomel pill look like? Can you cut it in half and take half in the morning and half around 2pm? I've heard others say that works well for them.

You might also want to discuss with your doc whether lowering the Synthroid while adding the Cytomel might be better for you?

Just so you know, I am a retired IT geek, so my troubleshooting skills are likely more compatible with troubleshooting a network than the human body. You seem to be a very nice lady, however, so I wanted you to know I'm here for you any way I can be.

Last edited by ErinBeth; 11-09-2006 at 09:07 PM.

 
Old 11-10-2006, 10:35 AM   #3
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Re: ErinBeth! Midwest! Need an opinion.

Board "guru" on any subject? I don't think so ...

I wish I could suggest something I know would work for you. It's clear you need some help in the T3 department. I've never seen anyone's so low. What a smart MD you seem to have. Doesn't he have any suggestions for easing into T3 replacement?

Some things I can think of that may or may not help:
Taking the 5 mcgs only every other day till you build a tolerance... Of course, because the half-life is so low, this plan may only serve to cause problems all over again every other day.
Taking it with food may blunt the effects...
Finding a compounding pharmacy that may be able to make capsules containing 2.5 mcgs each...

I don't know much about adrenal fatigue, except that it can complicate thyroid replacement. Have you had testing for that?

If it's any comfort, from all I've read, as long as you are younger than 50 (or thereabouts) and have a strong healthy heart, the "speeding" effects of thyroid hormone should eventually level out and not cause permanent damage.

Have you heard about "The 2% Solution" advocated by Dr. Ken Blanchard in his book What Your Doctor May Not Tell You About™ Hypothyroidism: A Simple Plan for Extraordinary Results"? It's his position that Armour contains a higher than necessary ratio of T4:T3, and that just a 98%:2% mix is all that's needed for a lot of people. Now, I'm no math whiz and have no idea how those percentages are calculated... but maybe you should look into the theory.
Wishing you the best with this problem, RM.

Last edited by midwest1; 11-10-2006 at 10:38 AM.

 
Old 11-10-2006, 12:25 PM   #4
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Re: ErinBeth! Midwest! Need an opinion.

Thank you both for your responses! Even just the moral support and friendship are so encouraging. I know my case is quirky and unusual but having others out there just to bounce ideas off of is helpful. I am watching the heart palps. the most; I can put up with the other discomforts for th time being to give it my best effort to adjust. Let me tell ya---it's me vs. my thyroid/body and I have no intention of giving up easily this time!!! Especially on such a low dose--my body can just learn who's boss...!

I'm headed off to the library for Dr. Blanchard's book, I've already looked it up on the library web site and there is a copy available at a branch not too far from my home. Thank you for that tip- the 98/2 thing sounds like it could really help me.

Midwest, where are you from? Is your sign on significant to where you live or just something you came up with as a log in? I grew up in the mid-west and am just curious.

Again thank you both!

 
Old 11-10-2006, 02:11 PM   #5
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Re: ErinBeth! Midwest! Need an opinion.

Yeh, from any fact sheets I can find on Cytomel, of the symptoms you mentioned, the heart palps sound most likely to cause concern. If you don't have a fact sheet on Cytomel and can't locate one or two on the web, ask your pharmacist for one.

My pharmacist always offers one when a new drug is prescribed for me, but I can find the ones they hand out on the internet as well. Those give a lot of good info including which side effects are most serious.

I did some looking last night. This is what I saw in regard to Cytomel (liothyronine):

Most serious would be indication of allergic reaction, such as difficulty breathing, closing of the throat, swelling of the lips, tongue, or face, or hives); vomiting; or chest pain, irregular heartbeat, or shortness of breath.

Apparently less serious possible effects are tremor, nervousness, or irritability; headache; insomnia; diarrhea, changes in appetite, or weight loss; leg cramps; menstrual irregularities; or fever, sweating, or heat sensitivity.

I have seen advice to stop taking the med and contact the doc if the serious effects appear, to keep taking the drug, but contact the doc for the less serious named symptoms and to talk to your doctor about any side effect which seems unusual or is especially bothersome.

Hmmmm, I think my doctor would have stopped seeing me if I had contacted him about everything I have felt during this process. Some of those less serious ones have been on my list at times, but I only have told the doc about them when it's time for him to decide whether to change my dose or not. I am thankful I've not experienced the more serious ones mentioned, except shortness of breath and that only before I was diagnosed. That was one of the symptoms which prompted me to see the doc in the first place and, happily, one that disappeared once he started treating me.

Please keep us updated on your progress. I would love to know, if you ever find out, why your FT3s dropped like that. I notice your TSH was a little higher than I thought you said it had been previously, can't help wondering if upping the Synthroid a small amount might have brought you back to a "feel good" place.

Another variation of options on the T3s might be to cut the Cytomel in half and only take half for an adjustment period. Then, if that goes well, bring it up to the 5 mcgs after 6-8 weeks. Maybe a "sneak up on it" approach would work for you? I don't know how homogenized that pill is, however. Wouldn't help much if most of the med is in just half of the pill.

Laughing at me, I'm approaching this as if I'm trying to fix a limping computer. Sowwy.

So many options and we probably don't have time in a lifetime to try them all.


 
Old 11-10-2006, 06:39 PM   #6
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Re: ErinBeth! Midwest! Need an opinion.

Hi Red Maple....

I just got on here and tho I'm getting ready to go out, I had to let ya know something. When you tried to cut your .5 Cytomel in 1/2, did you use a good pill cutter? I had been cutting mine in 1/2, (to take 1/2 in AM and 1/2 in afternoon), and I had no trouble cutting them in half,....they cut real clean and no crumbles, at all.

I have one off those pill cutters that you open the lid, line up the pill right in the middle, and close the top to split it in 2. Try another pill cutter if yours did not work well. The blade needs to be razor sharp too.

I have seen people try using Cytomel with the exact same problems/symptoms that you are having, and some of them have tried taking half of a .5, (2.5), and I've even seen a few that cut them down to fourths, and took 1.25.....how they cut that down to one quarter a pill is beyond me....as they are pretty small, huh? But I have cut mine in 1/2 many times. ( when I was taking it twice a day, due to forgetting and/or hard to find a time in the afternoon with an empty tummy, [I eat small meals and snacks throughout the day, I have to], I went back to taking it in the A.M. with my 125 Levothroid).

I had lots of trouble tolerating the T-3 in Armour too, red maple...my heart was always going too fast, I had tremors, short of breath, shaky as a leaf, etc. So my T-3 was always too high, and my T-4 was down at the very bottom. The Cytomel hasn't caused me any of those symptoms, but I will say, I felt crappy for the first 6 weeks or so that I took it.....I think it's just because my body was so low on it for so long...possibly? I had burning skin all over, as if my nerve endings were on fire...ugh...and I remember my knees were aching too. But this happens to me with any dose increase, including with my Levo. (T4) Very sensitive to thyroid meds, I guess.


If I were you, (like someone up there suggested), I'd try taking a half of that dose, for about 6 weeks. You probably do need to let your body ease into it. By the way....the Cytomel took a few months before I saw a real difference, (like 4 months), but it has helped me to feel great! It was just what I needed (I suppose) to get rid of some awful, lingering aches and pains. I hope you can get it to work for you too. Try to start small...and work your way up. Cytomel is some pretty powerful stuff,...even my shrink just told me that the other day....although he's a huge advocate for T-3. (for depression and related problems)

Best of luck to you,
Deda

 
Old 11-11-2006, 11:27 AM   #7
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Re: ErinBeth! Midwest! Need an opinion.

ErinBeth--thank you so much for your research on the cytomel. I have read the "enclosures" that come from the pharmacy when I filled my perscription, and as long as the heart palps. are not too bad, I've pretty much decided to follow my doctor's advise and stick with it for now. He has treated me for over a year now, we have a great professional relationship, and he helped me through the difficulties before so is very aware of my challenges. For now, I think it's in my best interest to follow his advise. The heart palps are still present today but certainly bearable. If it gets worse and I feel I my heart is in any danger etc. of course I will call the doc, or do the emergency room thing again. But the good news is that I slept very, very peacefully last night and it was wonderful!!! I slept for a full 9 hours! Something I have not done in years. I always wake up several times a night, lay awake for an hour or two, fall back asleep, only to wake again later. So I am taking the peaceful night as a great sign! Thank you so much for your care and concern. It really means a lot to me. From past posts, our views are very similar in our aproach our thyroid disorders. I love your common sense and open mind!

Deda- I have never heard of a pill cutter!! Duh, am I blonde or what!??? That may help me a lot! Thanks for the tip! But where do I get one? just at the pharmacy? I have heard that others have felt yucky for the first 6-8 weeks on cytomel also. I am going to try to stick it out for that time period, if nothing really negaive happens. If I can do it, I'm hoping I will feel terrific by the Christmas holidays! For the past two years my oldest son has been serving a humanitation service assignment in Peru, and we have not had him here for Chirstmas. His assignment ended this summer and I can't wait to have the whole family at home for the holidays. I am so counting on the cytomel to help me to have energy and feeling terrific so I can have the best time ever! Thank you so much for sharing your expeiences with cytomel. It really helps to know others have had as many challenges with it as I am having. As I said in my earlier post--I really, really want this to work and am going to give it my every best effort.

 
Old 11-11-2006, 11:49 AM   #8
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Re: ErinBeth! Midwest! Need an opinion.

Thanks, Red Maple, I have a sense of kinship with you as well.

I second Deda's recommendation to get a really good pill cutter. My pharmacy gives them to me free on demand and they dispense a particularly good one. I wouldn't know that if my diabetic daughter hadn't looked at mine with envy and she has tried several different ones. Apparently, pill cutters are not equally effective. I got one for her, too.

Mine looks like a clear plastic rectangular box, which is the reason my daughter likes it because you can see exactly where the cut will be made. You can wedge the pill into a V-shaped area which holds it firmly. As you begin to close the lid you can see the blade coming down and see exactly where the cut will be made. This gives you a chance to back off and try again if it isn't right.

Sounds like you have a sensible plan going and I see the good night's rest as a good sign, too. Perhaps some of the symptoms may even be nerves because of your previous experience. As long as your hormone levels are that low, it's pretty obvious you need to do something. We can support and cheer you on, but you seem to have a good doctor and the doc is in the best position to know what you need.

Deda: You appeared at the perfect time with real life experience which really matches the situation. Just the sort of testimony I would appreciate hearing if I were in Red Maple's situation. I have appreciated many posts of yours written while I was lurking in the shadows and always click when I see you have posted.

 
Old 11-11-2006, 12:59 PM   #9
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Re: ErinBeth! Midwest! Need an opinion.

Thank you ErinBeth...you're so kind...but I don't think I deserve that much credit...I don't post on here too often....the smoking cessation board is my true addiction now.

(and BTW, I love your pretty name!)..........

Right on ErinBeth about the pill cutters. You are right, there are good ones and not so good ones. Red Maple, maybe you can ask your pharmacist to recommend a good pill cutter for you...he/she will probably know which type works well. I think I need to go buy a new one myself as the blade on mine is probably getting a little bit dull, as I've been cutting up pills for about 3 years now. My T-4 pills seem to break perfectly in half tho, just snapping it in half by hand....they should make 'em all like that.

Red Maple, please be patient with how long the Cytomel takes to do it's job. We all do wish they would make us feel great in a month or so, but from experiance most of us here can tell you it usually takes longer. (for me at least 2 years total waiting time to just feel fairly decent again, and then a good 4 to 5 months after that with the Cytomel...I know...yuk, huh?....but it IS so worth it when you get good results)

The Cytomel has been a wonder drug for me, but it took months before I even noticed a slight differance. The reason I waited patiently is I read another woman's post, (someone with tons of thyroid knowledge) and she said she didn't see the full results of her taking Cytomel for up to 2 years total! (It's like you feel a little bit better month by month)

Well, fortunately for me it hasn't been that long, I started taking it April 25th, (you never forget the day you started taking something that changed your life so much for the better!), but it was (that I can remember) about 4 months before I really did notice a differance. I remember sitting here at 2 months thinking, 'if this stuff doesn't do something soon...why even take it?' So I'm glad I read that lady's post, and waited patiently. Sure would be wonderful if they came out with some super duper new thyroid med, that works right away, wouldn't that be great!? Maybe someday....

Good luck to you, and let us know how you progress with it, okay? Let us know too how you do with that pill cutter....and also have a wonderful Christmas with your son home from Peru...how nice! (and yes you sure do have a great Dr., as ErinBeth said...lucky you...he sounds super smart)

Have a great weekend all of you...

Deda

 
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