Cytomel

[DebE13]

I finally have my appointment this Friday with my endo after a long wait. I am feeling better than in November when I felt like I was going to crawl out of my skin. I would still like to try cytomel to see if i can get closer to feeling like me. The confusing is looking at my labs, I am not sure how to present the idea in a credible manner. He said he wasnt opposed to it if it were truly needed.

I take 125mcg levothyroxine M-S and 175mcg on Sunday.

I am aiming for Free T3 to be closer to 4 right? I am trying to anticipate what my endos next move will be. Leave my dose the same? Not sure how the fluctuating TSH is addressed. I had three labs done since my dosse was changed by adding the third 50mcg pill on sundays to my 125mcg dose. Will it be apparent to an endo that i am not converting T4 to T3 properly?

I would prefer NDT but I will be lucky if i can at least try cytomel along with the levothyroxine.

Any suggestions to rationalize my sales pitch would be appreciated. So far my visits have been nothing but frustrating. I am at least functional now but I would like to function higher than 70%. Good enough is not acceptable.


Free T4
1/3/2014 1.4 ng/dL
12/13/2013 1.4
11/29/2013 1.4
11/8/2013. 1.3
10/15/2013 1.1
9/16/2013 0.8

Free T3
1/3/2014. 2.1 pg/mL
12/13/2013 2.3
11/29/2013 2.4
11/8/2013 2.4
10/15/2013 1.8
9/16/2013 1.4

TSH
1/3/2014 1.85 uIU/mL
12/13/2013 0.92
11/29/2013 1.31
11/8/2013 3.2
10/15/2013 17.8
9/16/2013 7.1

[tex]

Hi Deb,

Comparing your last 3 test result sets, if I were your doc, your increasing TSH and declining Free T3 results would tell me that you definitely need something (since your TSH is up), and since your Free T4 remained steady the entire time (for the 3 sets of tests), while your Free T3 declined slightly, that something should probably be a T3 supplement. But of course I'm not your doc, so there's no telling how he will interpret it.

Based on this statement (which is certainly a realistic expectation):

I am at least functional now but I would like to function higher than 70%. Good enough is not acceptable.

He should be willing to make reasonable concessions to accommodate a need to address your remaining symptoms. It's certainly not unreasonable to expect a treatment that resolves your symptoms (rather than just a treatment that makes your doctor happy). Your doctor's job is not to satisfy his own needs for a sense of satisfaction, but to realistically meet the needs of his patients in a safe and practical manner.

But regarding the Cytomel, are you going to just ignore the possible wheat starch in it and take a chance on it? If you react to it, your doctor is going to be even less likely to prescribe a different T3 option after that, I would think. I would at least try to consult with my pharmacist to verify the origin of the starch used and/or to locate a different brand or generic that was safe to use, if necessary. In case you've forgotten, here's a link to the thread where Linda mentioned the wheat starch issue with Cytomel:

http://www.perskyfarms.com/phpBB2/viewt ... ht=cytomel

Tex

[DebE13]

Insert a big grimace and a few other choice words. I did forget about that.
I will have to make a request for Liothyronine Sodium and be very clear about reasons. They weren't too concerned about the initial script for levothyroxine. I had to go home and research it myself and this was after I told them my issues. Once I found one that would work they changed it. Kind of sad that they aren't looking out for my best interest but with everyone's support here I've learned not to get in a snit anymore about it.

Thanks for the reminder- I would have approached the subject incorrectly to my own detriment. They made it clear NDT was not an option so hopefully the Liothyronine Sodium will be an alternative that works. That is, if he agrees with my line of thinking.

[tex]

Kind of sad that they aren't looking out for my best interest but with everyone's support here I've learned not to get in a snit anymore about it.

Unless we have a verified celiac diagnosis, or anaphylactic reactions, most doctors just don't take our food sensitivities seriously (bless their ignorant hearts).

Good luck with the appointment.

Tex

[sunny]

Deb, I was able to talk my doc into Armour ...it's actually LESS $$ than levothyroxine now! Maybe u could ask for Armour for price savings?
Sunny

[DebE13]

Thank Tex. I may have to postpone my appointment since this is day two of the flu and a chest cold. I was hoping it would just be a 24 hour bug but I guess not given I'm sitting on a heating pad basically dressed in my snowmobile suit sipping hot water because I can't warm up among other joys. It's upsetting to think i may have to wait a few more weeks to reschedule but I can't imagine even getting dressed to go out right now. On the same token, I get upset when sick people don't stay home either so I can't really have a double standard. I have this, I suspect, because a coworker decided to come in while having the flu.

It's been a crazy week. My husband brought home a stray kitten on Sunday so it wouldn't freeze to death in this lovely -40 degree we're having. My 8 and 4 year old cats were less than welcoming. After a trip to the vet, she is on the mend and I'm praying my others don't get sick. I have a new sleeping buddy though since I've banned myself to the couch.

Sunny, I'd love to try Armour but I was rather harshly scolded when I brought it up. I'm not having much luck finding another endo who will consider it in my area. If I travel outside my network, the care wont be covered and my current endo most likely would not be willing to do my cancer follow up testing. It's too expensive for me to cover on my own in addition to the sky high premiums I'm already paying. Talk about being caught between a rock and a hard place.

[JFR]

Sorry you're sick Deb. It seems a lesson that people have a hard time understanding. If you are sick stay home. Hope you feel better soon.

Jean

[tex]

Deb,

I'm sorry to hear that you're sick, too. I've been maintaining a low profile lately, trying to avoid the flu. It's pretty widespread here in Texas.

I agree that our health care system leaves a lot to be desired. I reckon it always will, as long as insurance companies are calling the shots.

There's nothing like a new kitten for brightening up an otherwise dreary winter day. Hope you feel better soon.

Tex

[DebE13]

I had to cancel my appointment with my endo today because i still have the flu. The nurse was snippy with me when i explained i was hoping for an adjustment in my meds. She said that the doctor will not be changing anything at this time because all my numbers are normal.
I was clear i want to see my Free T3 closer to 4. Apparently I'm not supposed to have input to my care.
Considering she is using the reference ranges for people that have their thyroid glands, i simply don't understand. Plus with my history of "normal" that is something that i don't even want to hear. She said i can wait until next week and talk to him about my symptoms. Too tired to think about it now.

[tex]

Considering she is using the reference ranges for people that have their thyroid glands, i simply don't understand.

She doesn't understand either, but the problem is that she doesn't realize that she doesn't understand. Medical professionals don't like to deal with complex situations or options — they operate under the KISS principle. The problem is that simple doesn't always work well.

Tex

[DebE13]

I finally had a visit with my endo after cancelling my appointment becasue of the flu and missing the rescheduled appointment becasue the nurse failed to tell me he was at a different location that day. I explained how I felt and he said he would prefer to increase my T4 but T3 therapy was also an option, although not his preference since it can cause problems. I told him I was aware of the risks with the heart, possible stroke, etc. but I wanted to at least try it since my T3 is at the low end of their normal range. I went on further to expound on the fact that I keep hearing from other thryroid patients that the closer to the high end (4ish) they get, the better they feel. He told me even giving T3 to a person with a normal thyroid will make them feel better and again explained his concerns about "do no harm." I almost had to scoff at that given my GI experiences but since he was being sincere and actually listening to me, I refrained. I had to remind him of my food sensitivites and the caution that needed to be taken with RX fillers. It took him a bit longer to do his calculations since I need to remain on the 50mcg T4 pill and after he was finished I told him I did not want to take Cytomel becasue of the same reasons. I guess I should have told him that before he started figuring what dose I would be at- my bad. Anyway, he was receptive to my request for using the generic by Paddock and made reference in his notes that this was at my request. I was surprised when he asked if I knew of a pharmacy that carried it. I told him not at all but I'd be willing to make the calls if necessary. It does show that it is best to come prepared and willing to do the leg work to get what you want. He is willing to try the T3 but was clear he would not be using my Free T3 as an indicator if it was working but would be looking at the TSH. I can't remember now if he said up or down, but if in 6 weeks when he reviews my numbers- if he doesn't like where they're at then I'm done with that option. One step at a time. I was relieved I can at least try it to see if I notice improvement in my fatigue. I wanted to track down the nurse that was so snippy to me over the phone and tell her she should keep her mouth shut about what the doctor will and will not do.

At least for this visit, I left with a smile.

I've also read that some people will split thier dose. Does anyone here do that? I guess I was too busy being happy to ask about how to take it. duh. I currently take my levothyroxine at 9 PM. I should take the other as a split dose- in the morning and the other half in the afternoon? And with or without food doesn't matter? I've also read that some people chew it if they can bear taste. Now that I'm typing this, I'm embarrassed that I didn't ask for clarification while I was there.........

Oh, my flu was the nasty one. I'm finally starting to feel like me again. The chest cold is still hanging on too. What a winter but at least my I'm still on the 3mg of entocort every five days routine and the flu didn't set me back too bad in realm of D.

[tex]

He told me even giving T3 to a person with a normal thyroid will make them feel better and again explained his concerns about "do no harm."

I have to respect that attitude, but one would hope that he would also realize that not treating a patient, or under-treating a patient, could also be classified in the category of doing harm. And as far as a normal person feeling better with a T3 supplement goes, I would have to question whether a "normal" person who shows a positive response to a T3 supplement is actually "normal". For all your doctor knows, that individual may represent a case of undiagnosed hypothyroidism (a missed diagnosis).

That scenario could conceivably be applied to any missed diagnosis for any disease, because doctors automatically classify any patient who fails to qualify for a diagnosis as "normal", even though they may be as sick as a dog. As an obvious example, witness all the misdiagnosed cases of MC or celiac disease where the patient will respond to treatment for MC or celiac disease, even though their GI doc insists that they are "normal", because they have ruled out x, y, and z diseases. I can still remember when my GI doc told me (over 13 years ago) that there was nothing wrong with me. That's when I resolved to never go back, because I couldn't have been much sicker, at the time. In general, the diagnostic performance of most doctors leaves a lot to be desired. Sure, they can diagnose the obvious cases, but they are usually lost when they come up against the more complex cases, and/or issues that they are not familiar with.

I wanted to track down the nurse that was so snippy to me over the phone and tell her she should keep her mouth shut about what the doctor will and will not do.

At least for this visit, I left with a smile.

It doesn't get much better than that, as doctor appointments go.

I've also read that some people will split thier dose. Does anyone here do that? I guess I was too busy being happy to ask about how to take it. duh. I currently take my levothyroxine at 9 PM. I should take the other as a split dose- in the morning and the other half in the afternoon? And with or without food doesn't matter? I've also read that some people chew it if they can bear taste.

I've never tried splitting my dose, so I can't offer any insight gained from experience. I suppose that might help if you can feel that your symptoms are more noticeable later in the day, or during the night. I take my Armour before breakfast. Usually there's a 20–30 minute wait before I eat, but sometimes it's much less. Call me a poor patient, but I never have been convinced that taking pills on an empty stomach makes a huge difference. Sure, it may make a small (but measurable) difference, but since doses are all arbitrary anyway, what difference does that make in the long run? IOW, your dosage should be calibrated according to your preferred routine, IMO. That makes taking pills much easier, and the easier it is, the more likely we are to not forget to take them (or take them improperly). I take all my other pills right after breakfast.

I tried chewing the Armour a few times before Forest Laboratories changed the formulation a couple of years ago, but I never could tell if it made much difference. That's probably just me though, because it would make sense that the supplement should be more absorbable that way. The tablets used to be chalky, and they could be dissolved under the tongue, sublingually (if that's a word), but the new ones have a hard shell that makes it more practical to just swallow them, IMO.

That all said, if you feel that your doctor is under-treating you, then you will almost surely get more mileage from your dosage if you split the dose, take it on an empty stomach, and chew it. Of course, the downside is that this will also be reflected in your test results, and so you will be stuck with having to do all that for the rest of your life, in order to squeeze out enough medication to resolve your symptoms to the maximum extent possible. TBH, if I were in that situation, I would do it the way that I prefer to do it (for the rest of my life), in order to reflect this in my test results. If I wanted to boost (maximize) the benefits, then after the doctor settles on the final dose, that is when I would start utilizing benefit-boosting methods. Of course, whenever the time came for a routine test to make sure that my numbers are still on track, I would have to remember to stop using those treatment enhancements a week or so prior to each test.

Oh, my flu was the nasty one. I'm finally starting to feel like me again. The chest cold is still hanging on too. What a winter but at least my I'm still on the 3mg of entocort every five days routine and the flu didn't set me back too bad in realm of D.

Bummer! I'm glad it's behind you. The one positive outcome is that you should now have a pretty good resistance to the H1N1 strain and closely-related mutations/variations. I'm pretty sure that I had that one about 30 or 40 years ago, so I'm not overly concerned about catching it. I hope it doesn't prove me wrong one of these days.

Tex

[Lesley]

Deb,
Too tired to read the learned discussion with any part of what's left of my brain, but I am sorry you are sick.
I can only reiterate that the ONLY year I didn't get a flu shot I got the worst flu I have ever had.

[DebE13]

Thanks Leslie, doing much better now. I had the same reaction once and it was the last time I ever got one. After experiencing this one, I can understand how people with compromised health can die. Its been a long time since I've gotten this sick so I'm just glad it's behind me.

Thanks for the suggestions Tex. Hopefully it will be ready for pick up today and I can see how it goes. It's obvious there is a movement going and changes in treatment of thyroid related cancer. I asked what my long term follow up would be because I've found I fit into a very lucky category within thyca as I didn't need radioactive iodine treatment and many of the follow up testings that goes along with those that had bigger nodules. Anyone that calls thyroid cancer the good cancer to get if you have to have one should get a kick in the pants. I know there's much worse cancers out there but when I read some of the stories out there it makes me thankful of what I don't have to go through. My endo said they are now looking at TSH suppression and changing their minds as to how much they suppress the TSH and it's success with preventing recurrence. Keeping it near zero is no longer the goal, especially for micro carcinomas. I will go for an ultra sound in six weeks for a follow up and continue with the hypothyroidism management. It's been a rough three months after the surgery but at least I'm making forward progress.

I've been following a post on the ThyCa forum about a recent publication by Mayo related to the over treatment of micro carcinomas. It's very interesting and and a bit upsetting because it suggests these micro carcinomas should be renamed to something that does not indicate cancer and just left to be monitored until they become something bigger. In my case, it was night and day difference having it removed. My two years of struggles I can confidently say were due to my thyroid and I have no regrets having the surgery. I now have a a different set of issues that will be life long to manage but I look at it as there was no choice in the matter. Sadly, I am better of with out it but at least now I have the opportunity to get back into life. I still wonder if my MC had been treated with dietary changes from the start if I would have developed thyroid problems or not. I don't dwell on it but it's one of those what-if questions I'd like to know.

[LindyLou]

Hi Deb,
When I first started on generic T3, I split my dose for 2 weeks. After that I've been taking a single dose in the mid morning. I hope you find it helps. I know that for me, I only have to occasionally (once a week) take naps now. This is compared to my 2-4 hour coma naps that would occure at least 3-4 times per week. I find now that if I forget to take my dose, I will get heart palps in the evening. I go back in for another round of blood draws next month and am really wondering if this is bringing my numbers in the range I think I need. Good luck to you Deb, I hope you benifit from it.

Linda