Bad reaction to generic Cytomel, anyone ?

[artfemme]

Labs in 2007-2008
TSH varied between 1.49 and 1.52. I had gained 40 lbs without overt cause.; had every hypo symptom except constipation, lost 1/2  head hair,eyebrows, pubic hair, hoarse voice, etc.; developed osteoporosis. I was told this was all "aging", could be caused by " a number of things" but doctor would not specify any. I was constantly ill with respiratory problems and had to take antibiotics frequently. Then the doctor discovered an enlarged thyroid w/ non-cancerous nodules.Put on 50 mcg. Synthroid in March 2008 to control the nodular growth. Made no difference in the way I felt. TSH dropped to .858 in a cascade profile, Free T3, 2.9 and T4,10.3. Antithyroidglobulin Ab fine. Switched to same dosage of generic in October. Kept getting worse. it Obvious to me now that I had myxedema. Ended up in hospital in late December after a panic attack that lasted 4 days without cease. Severe depression. In hospital my blood pressure went up to 196/98, and I was very swollen. I was not allowed to take any thyroid meds. in hospital.


Labs for last 2 years

Jan.2009
T4 50 mcg. generic
Just out of hospital, very depressed, myxedemic, hair loss, hoarse voice, panic attacks,etc., had respiratory illness from hospital that required two rounds of antibiotics. Muscle aches. Night sweats.
TSH                   .175 (L)
Thyroxine            12.4 (H)  
T3 Uptake              31


Mid-February 2009
added 25 mug. Cytomel to the T4, felt like I came out of a coma. Lost 15 lbs. in 3 weeks. Depression, muscle aches, sleeplessness improved within 3 days. Felt better than I had in 9 years.

April 2009
T4 50 mcg generic Mylan, Cytomel 25 mcg
The best I have felt in at least 10 years
TSH                    .005(L)
T4                        4.7
Free T4 index        1.2
T3                        242 (H)
T3 Uptake              26
did not test for anything else

May 2009
Put on Armour, April7-June 26, felt HORRIBLE. Went to new Endo, said to stop all meds immediately. Primary doctor disagreed.
TSH                     .085 (L)
Thyroxine               7.2
Free T4 index         2.0
T3                         180
T3 Uptake               2.0


July 2009
back on T4 50 mcg., Mylan , Cytomel 25 mcg.
Felt better
TSH                        .51
Free T4                    1.7
T4                            6.1
T3                            129
T3 Uptake                  28
Cortisol                     12.9      


August 2009
Felt good, my head and body hair started to grow back and get curly again. Good energy. Same dosage.
TSH                         .012 (L)
Free T4                     1.7
T4                             5.9
Reverse T3               186
T3 Uptake                  28
My blood pressure had returned to it's normal 116/72
At this point I was being treated by my primary doctor and I had persuaded her to put me on the T4-T3 combo even though my TSH was low, told her it wasn't going to kill me and that if I was right, my labs would normalize. Her note attached to these last labs said:
"Your results are pretty good-the thyroid studies confirm how you are feeling-that is ,"normal"-hopefully you are continuing feeling better each day. your glucose, kidney, and liver functions are good. The lipid panel has also normalized as you anticipated with better thyroid function."
MIND YOU, I had been going to her and and 2 Endos since 2004 as my health deteriorated, and was told I was "just getting older". It took her actually seeing the weight loss and the labs to believe that how I said I was feeling reflected hypothyroidism.

On August 30, 2009, the Cytomel was changed to the Mylan generic. I now realize that I must have started declining then. I felt pretty good up through Christmas, but in Jan 2009 or early Feb 2010, had a bad incident.

Labs after the change to all generics:

October 2009
T4 50 mcg, T3 25 mcg. Mylan
TSH                           .010 (L)]
Free T4                        1.7
T4                                6.2
T3 Uptake                     27
T3                               343 (H) very !
rT3                              342


November 2009
50 mcg T4, 25 mcg T3, Mylan
TSH                             .007(L)
T4                                  7.3
T3                                 322 (H) very!
        
My doctor made no comment on the rising T3 levels.                



In Jan-Feb got dizzy when bending over, heart palpitations and aching in the joints. Thinking that these were hyper symptoms, T3 was cut in half. In about a week hyper symptoms ceased, but I immediately became extremely depressed again, got foggy brain and difficulty focusing eyes and attention. Within 3 weeks, I gained back 15 lbs. and as of now have gained 23 lbs. total.

DO YOU THINK THAT this all happened because I was switched from the Cytomel to the generic ?????

Here are the rest of my labs:

March 2010
T4 50 mcg, T3 12 1/2 mcg,  Mylan,
Feel terrible,still depressed, foggy, vision and concentration problems. Depression lasted until May.
TSH                         .173 (L)
T4                              6.3
Free T4 direct             .91
Free T4 index             1.8
Free T3 serum            3.6
T3 uptake                    28

June 2010
T4 50mcg,  T3 12 1/2mcg-25 mcg.,  Mylan
feel terrible. fat, bloated, still gaining weight, muscle aches, foot cramps, but not depressed.
Take 12 1/2  T3 for about 3 days, then need to take 25 mcg for a day or two, then back to 12 1/2 mug.
TSH                            .564
Free T4                       1.14
Free T3                         3.8

August 5, 2010
feel terrible, bloated, still gaining weight, very swollen abdomen
Dr. tries to raise Free T4 level by changing meds
T4 100 mcg., T3 12 1/2- 25 mcg. Mylan
TSH                              .028
T4                                  9.2
Free T4 index                  2.7
Free T4 direct                1.23
T3 uptake                        29
Free T3 ,serum                5.6 (H)
Free T3                           3.8

August 31, 2010
from new Endo.
I still feel terrible, gaining more weight and bloat, cellulite again over whole body.feet very swollen, dry skin. Not as bad as before I was on meeds at all, but pretty close.
TSH                                 .023
T4                                     9.6
Free T4 index                     2.8
T3                                     185 (H)
T3 Uptake                           29
Cortisol (a.m.)                     7.5   I was not told to fast
FSH                                  73.3   I cycle HRT, had my "period" this day

New Endo put me back on T4 50 mcg. Mylan and said no to Synthroid. Changed me back to Cytomel 25 mcg. I have been on this mix for 3 days, don't feel any different yet.

Has anyone else experienced this with the switch to generic? Did you switch back ? How long did it take to feel better? To lose weight ? Did you have to diet, or was the weight from myxedema ? I would be so grateful for any help in interpreting my labs, seems like they're all over the place. And grateful for any shared experiences. I'm not suicidally depressed, but I'm very tired, have been dealing with this for over 10 years, told I'm just in need of psychiatric treatment ( didn't help and the  many drugs they tried for depression made me sick and crazy. T3 cured it almost instantly. ) and am now becoming despondent. Life is a burden like this, and I am all alone. Amazing how when you're sick, people just say eeeeew, no fun.

Thanks for helping me.

[Barb135]

Your FT4 is almost mid range, which is just about right for most of us.  Most of us seem to feel better when FT4 is about mid range and FT3 is in the upper 1/3 of its range.  

Although Total T3 doesn't tell us what we want to know, what was that result, along with the reference range?  

Edema is simply swelling or puffiness, which can come and go.  It's possible that you had some swelling that was visible to your pcp, but maybe the day you saw the endo, it wasn't visible.  One of the first things that went away when I started on thyroid med, was the puffiness (bags) under my eyes.  It's possible that the med you are on has already taken the swelling down.

It does sound like you need to find a different doctor (endo), though if this one is determined to take you off med.  You need a doctor who will treat according to symptoms, as well as the labs.  You must remember that you are on med, and of course the goal is to get your levels to a "normal" state.  It stands to reason that if your levels are normal when you are on med, if you take away the med, they will no longer be normal.  Duhhhh.......... this doctor needs to think a bit.  Apparently, he's looking only at the TSH and because it's low, he wants to take you off med.  Don't let him do that -- I had a pcp that did that to me; I was sick for months longer than I needed to be.

I will be interested to hear how you do on the cytomel.  Everyone says it's very fast acting, and I could tell a bit of difference, but it took 2-3 weeks of taking it before I could really feel it.

In order to choose a "best answer" to your question, move your cursor over the upper right corner of the post you choose.  It should like up with a green check mark and say "select best answer".  Just click there and it will be done.

[artfemme]

Dear Barb,
MedHelp keeps prompting me to name a "best response", which of course would be you...how do I do that ? Haven't gotten the ranges in yet because I had to spend 12 hours so far responding the most clinical and informed way I could to a letter the newest endo wrote to my pcp about my status. Once again someone's saying I'm not hypothyroid, he's in favor of gradually taking me off meds , TSH normal yaddayadda and "we" should think of other treatments for my symptoms. He also said there was no edema when my current podiatrist (for neuroma from swollen feet) and my pcp clearly see there is. The endo noted that my TSH was normal before treatment and now is too suppressed. Of course he hasn't studied my other blood tests, so I informed him that pre-medication my TSH rose from .78 to 1.58 (range .40-5.50 at that time) while I was developing every symptom of hypo except constipation. In other words, it doubled. So if normal for me is at the very bottom of the range, of course my TSH will be below normal on medication. Does this take a rocket scientist ? And I also asked him what the probability is that I would have a number of other ailments to explain symptoms that all correlate with the single diagnosis of hypothyroidism, and that also all went away with medication for that disorder. Shoot. AND, when I got my blood test back, he didn't test for Free T3,only Total, though he promised me he would. I'm so mad ! He did test for Free T4, which is 2.8 (range 1.2-4.9) which seems still low to me. Have been on Cytomel for about a week now, can't tell yet, will keep you posted. Haven't had a foot cramp in several days.

[Barb135]

It's very frustrating to spend a lot of time on a response, then lose it all just because of a "misclick"........

Really, the most important labs for us to have reference ranges for are the thyroid, since that's what we deal with here, but since the whole body has to work together, we would need some of the other ranges as well. If all the blood work was done at Lab Corp and they use the same ranges consistently, you wouldn't need to post all of them separately unless some were done at different lab with different ranges.

As I said, a lot people have issues with the fillers in med from various manufacturers.  Maybe you could try cutting back on the amount of T3 for a while and build up again in order to see if your body will become used to it; otherwise, I'd suggest that you go back to cytomel.

[artfemme]

Oh, sorry, almost all labs done through Lab Corps.

[artfemme]

Dear Barb,
Spent hours last night responding and then lost it all somehow when trying to post. So demoralizing to have to do over. Thanks for answering, I'll get back asap. I've read "The Thyroid Solution" and lots of online science, most helpful from The European Journal of Medicine. I've never been a "standard size" in anything, so not exactly surprising that my labs wouldn't correspond with their norms, have had paradoxical drug response before also.Been fighting w/ doctors about my symptoms for years, there are a few other posts on this forum under my name detailing that.

Should I post ranges for ALL those labs, or would just the last ones be sufficient? I did find some info on the Mary Shomen site from a bunch of people who claimed the same problems I'm having from switching to generic from Cytomel. Glad it didn't happen to you.

It's hard, having felt so well, to be almost back to square one.

Thanks.

[Barb135]

What are the reference ranges for the FT3 and FT4 results?  There is no "standard" range for these, so they vary from lab to lab and must come from your own lab report. Without the ranges, it's very hard to comment on your particular situation; however, I can make some "generalized" comments.

There can be a big difference between T3 and FREE T3 results.  Generally, when a lab lists it as simply "T3", this means the test was for Total T3, which is considered obsolete.  Some of that would be bound by proteins and therefore unusable.  Same goes for T4, versus FREE T4.  When getting blood work, always make sure you are getting FREE T3 and FREE T4.  

It's very common for TSH to be suppressed when on a combination T3/T4 med and/or when taking a T3 med, such as cytomel.  

Myxedema:  "The medical term myxedema is most commonly used to describe the physical characteristics of a person who has untreated hypothyroidism  (an underactive thyroid). One typical feature of myxedema is generalized puffiness, especially noticeable in the face around the lips, nose and eyes."  

Are you are referring to being hypothyroid when using the term myxedema?  Or are you referring to something else?

I've been on T3 med, along with my T4 med, for almost 2 yrs.  I started out on cytomel, but was switched to generic well over a year ago.  I have not had any adverse effects from taking the generic form of the med; however, some people can't tolerate certain fillers used in the manufacture of some meds.  

Are you taking your cytomel all in one dose or are you spreading it throughout the day?  Cytomel is a fast acting med - meaning it does not build up like the T4 meds do, so it takes effect quickly, and is used up  within a few hours.  25 mcg is a relatively high dose for T3 med and most people find it beneficial to split it into multiple doses - such as 1/2 in the morning, 1/2 around noon; or 1/3 in the morning, 1/3 around noon and 1/3 around mid afternoon.  Best not to take it after around 3:00 pm, but that would depend on your schedule.  If you are taking it all at once, you could be swinging from hypo to hyper throughout the day.  Cytomel, unlike T4 meds, does not have to be taken on an empty stomach.

A lot of us find that we have to "work" at losing the weight gained due to being hypo.  I, personally, gained 30 pounds in about 3 months prior to being diagnosed; I'm still struggling to lose it; however, I find that when my FT3 is at a good point for me, I don't have to work nearly so hard at it.

Have you been tested for thyroid antibodies to confirm or rule out Hashimoto's Thyroiditis and/or Graves Disease?  

Last, but not least, symptoms of hypothyroidism and hyperthyroidism can overlap; both can cause fatigue, anxiety, depression, etc; and yes, it's even possible for those who are hyper to gain weight.  

Again, without the reference ranges for your lab results, we can't see where you fall within them, so you may have been either hyper or hypo.