Going backwards - Gimel & Barb 135 & others help!

[flyingfool]

here we go!

My wife's Primary care  Physician (PCP) Dr finally referred mty wife back to an endo.  My wife had been going to an endo who started her on T3 medication with great results.  He however retired recently.  Had been going to PCP and have gotten small increases in T4 doses.  But the PCP finally didn't feel comfortable with request to increase again and sent a referral to an endo.  

Just happend due to cancellation that she could get in this morning.

The usual routine and reliance upon TSH.  Endo absolutely convinced that my wife is over medicated and is recommending a slight reduction in the T3 cytomel from 7.5 mcg a day down to 5.0 mcg per day byu skipping her 2.5 dose in the afternoon.

We are VERY disappointed.  The endo convinced that Cytomel increases chance of bone loss etc.  

Only good news to come out if the meeting was that they recommended a sleep study to her PCP which could be contributing to the sleep and fatigue issue.  And this may be a good thing as it is entirely possible that my wife could have sleep apnea.  I have noticed some gaps in breathing while she sleeps.  I think endo nearly convinced that a lot of my wife symptoms are related to poor sleep.

I went to the appointment with my  wife and I and my wife gave I think strong opposition and expressed by if nothing else from our body language our disappointment.

My wife is sad because she knows she will have to reduce the T3 she is taking, feel worse for the next 8 weeks until she is tested again.

Totally frustrated.  I just literally returned from the appoitment and my mind is still thinking of things said, and things I should have said etc.

gimel;   Can you please PM or link up that study or studies that you have that shows that osteoprosis is NOT connected to Thyeoid and t3 specifically.

Also the endo stated that the conversion of T4 to T3 occurs WITHIN the cell.  And therefore the blood levels of FT3 are not particularly relevant.  Both the PA and the endo both stated that TSH is MORE stable than either FT4 or FT3 due to the test itself and the extremely small measurment of the Free tests compared to TSH.  And TSH is more stable.  

All of the last paragraph is exactly the OPPOSITE of what everything I have read, witnessed, experienced and feedback gotten from this and every other site that I've researched.  

EXTREMELY frustrated!!!!!!!!

latest test results were

TSH basically undetectable  but decreased over the last two increases in T4 dosages
FT4 0.98 (0.78 - 2.19) = 14.2% of range
FT3 3.66 (2.77-5.27) = 35.6% of the range

I suppose anything is possible that the endo could be right.  But every time she gets an increased dose she feels better.  The Endo says well that's not surprising because thyroid is a stimulant and especially T3 so of course you feel better, just like having coffee makes you feel better.  AHHHHHHH!

Thing that makes me the most mad is that they asked a ton of questions as to symptoms. She has a multitude of symptoms that even the computer spit out a diagnosis as Hypo.

So if you have a ton of Hypo symptoms apparently you're not really Hypo??????????  You are overmedicated??????

AHHHHHHHHHH!

[Barb135]

I'm guessing the lack of sleep is from not enough T3, rather than too much, so it does seem that the endo is going backwards.  

When I was on only 5 mcg T3, I usually waited to take it around 10:30 or 11:00, so I wouldn't have such a hard time staying awake during the afternoon.  I was working then, and there was no way I could take a nap, so I crashed every day around 2:00.  Taking the T3 later helped quite a bit, but of course, it didn't change the fact that I needed a higher dose.

[flyingfool]

My wife was on 7.5mcg of  T3 generic.  She takes 5 mcg in the AM and 2.5 mcg in the afternoon.  The Endo wants her to stop the afternoon dose.

The endo thinks or at least wants to rule out my wife's inability to stay and get good quality sleep being from the T3 dose.

I guess I understand the endo's point. But I can assure you, my wife could take the 2.5 mcg of T3 at 9PM and it wouldn't make a bit of difference.

All I know is that we had a very busy and tiring weekend with our daughters sporting event all weekend.  It has been4 days since she stopped taking the afternoon T3.  Friday night she as asleep on the couch before going to bed only 2 days after stopping the afternoon dose. She still didn't sleep well through the night.  Plus this tireing weekend and again she is still not getting good restful sleep.

I can already tell my wife is more "moody".  And it is less than a week into this nonsense.

We will see how it goes in the next several days that are more "Normal" routine.  She is supposed to wait 8 weeks to get tested again.  As there is a "standing order" at the lab, I think we may not wait the full 8 weeks.  Especially if she is feeling worse.

Another option is to have my wife take the 5 mcg T3 a bit later in the day rather than first thing when she wakes up.  Maybe even take with her noon lunch meal.

[Barb135]

http://www.drugs.com/cdi/liothyronine-tablets.html

"Take liothyronine tablets by mouth with or without food."  Cytomel is simply the brand name for liothyronine.

Sounds like your wife is doing okay, but what about that second dose of T3?  Doesn't she split her dose?

[flyingfool]

Thanks Barb.

I was going to go out to Cytomel site and see what they recommend.

My wife takes her T4 before bed.  She takes her T3 after she wakes up. and takes her vitamins later in the morning.

[Barb135]

Vitamins/minerals should not be taken within 4 hours of taking any thyroid medication; however, T3 med can be taken with or without food.  The printed insert that comes with the medication should say that.

I don't avoid any food... for instance if I want milk in my coffee an hour after I've taken my med, I have it; or if I want a glass of milk with my lunch (when I take my second dose of T3), I have it.

I just don't  take supplements within 4 hours of my med.

[flyingfool]

Question about eating and T3 medication.

The previous endo told my wife that eating and T4 separation is needed. But with T3 (Cytomel or generic) avoiding eating is not a concern.

Is this true?

I thought it was ANY thyroid hormone would be affected by food for absorption as well as potential binding with minerals such as Calcium.  or is that primarily limited to T4????

[Barb135]

I'm sorry to  hear about this setback.  It's taken your wife quite some time to get this far, then to have to start back tracking is a pretty tough blow.  

Looks  like gimel's pretty well got you covered, as far as links go.  

I hope you have better luck than I've had getting doctors to read things I've brought in, because there's a lot of good information there.

[gimel]

I think that I recall from an old Dale Carnegie course I took eons ago that the only way to win an argument is to avoid it.  Otherwise, if you lose, you lose, and if you win, you lose.  

I think the best way to approach the doctor is to become as familiar as possible with all the important points that relate, and then consider sending him the letter, modified as needed to fit your situation, and ask him to consider doing whatever you want for your wife.  I believe that it is better to let him review and consider the points in the letter and all the scientific evidence and then respond, rather than a face-to-face confrontation.   In those situations it is impossible to give the doctor all the info he needs to know, have time for him to absorb, and respond in the way you want.  The end result is predictably not what you want.  

If there are any important points that you think need to be beefed up, let me know and I'll provide some more references.  

[flyingfool]

Thanks Gimel.

Lots of info to go through and lots of links to go to read and print out.

Sure is easier to tell on the forum how to not take no for an answer than it is when you are in the room going toe to toe with a Dr. on a point by point battle.

[gimel]

I am so sorry to hear of your new roadblock, after all the progress made previously.  Have a look at this form letter in this link.  I wrote it for another member who was having similar problems with her doctor.   I think it will give you the ammunition you need to try to persuade your Endo otherwise.  If you need more, just let me know what you are looking for.  I'm sure I have references to scientific studies that will cover whatever else you need..

http://www.medhelp.org/posts/Thyroid-Disorders/Lab-Results-on-Armour---T4-Conversion/show/2048950#post_9694718

[Totie]

I totally understand your frustration with "please go by my symptoms" and not necessarily lab work.

I saw my new PCP today (mine finally retired), so did my Endo..

I was really nervous on him changing my dose because I know my TSH (yes that is all they go by)is suppressed and the last time I saw my endo (Nov 2013)she told me to skip a day on taking it, however, I was not and am NOT having any symptoms of either hyper/hypo so I didn't change anything...I knew I would not be seeing her again.

Well when I met with this new pcp I was honest with him about my TSH being suppressed and not to freak out...LOL...

He just said "so don't change a thing"? I love him already.....He didn't even bother testing my thyroid this time around, but only if I think I need it tested. Yeah....he gets it....I can have it tested once every year....

My endo was afraid that my suppressed TSH would cause heart issues, however, I am healthy....not over or underweight (maybe a little underweight), but not by much. I do watch what I eat...

I pray that your wives' doctor sees her point of view on symptoms....