Too much synthroid--INTERMITTENT attacks of massive hyperthyroidism

[milesprauer]

Can someone help me?  My endocrinologist won't--says I should get another doctor if I can't live with the reaction I'm getting to 100 mg. Synthroid (brand) + 12 1/2 mg Cytomel.  

I had my total thyroidectomy in 2006.  It took a long time to get levels of synthetic thyroid hormone right--I could accept that, and the mood alterations that went with the experiments.  But for over a year now I've been on the "right" dose, above, which shows up in blood tests as a stable level that is slightly hyperthyroid--a dose I'm supposed to take to suppress the return of the cancer.

BUT since May I've been experiencing horrific sudden attacks of hyperthyroidism out of the blue.  I shake all over, sweat all over, often can't speak intelligibly, have a rapid heartbeat and often break down crying.  I'm completely unable to function in my job and pretend I have flu or something so I can stay home and cry in bed.  In consultation with my psychiatrist, I've responded to such attacks by halving the Synthroid dose for three days.  It TAKES three days to have any effect:  I get the heavy symptoms, start cutting the dose the following morning with no relief, cut the dose again the next morning still with no relief, and then cut it again the third morning:  at that point, the symptoms mostly vanish.  Clearly this effect is hyperthyroidism.  I've tried standard anti-anxiety drugs and they have absolutely no effect on these symptoms.  

I can't go on like this.  I can't keep taking three days out of my life to be absolutely miserable, to the point of having suicidal ideation.  I'm going to try to find another endocrinologist (there's only one in my town, so I'll need pointers) but I also need to know if anyone anywhere has had anything like this kind of effect.  To the best of my knowledge, the Synthroid seems to be accumulating in my system until I suddenly go massively hyperthyroid.  The big symptoms are somewhere between a month and a month and a half apart.  I'd like to be able to anticipate them and cut the dose ahead of time . . . but what I'd really like is to know for sure what is happening to me medically.

By the way, the doctor line is "full" of questions today.  So much for feeling miserable and needing help.

[glassfinder]

I have had thyroid symptoms for years. I was diagnosed as hypothyroid about a year ago. strangely enough, I have the symptoms all day and until 7 pm also AND a few cocktails help in the evening to feel normal. I think when my body has too much synthroid or cytamel it goes into hyperthyroidism. I lower the doses of my synthroid a little and get relief. My doctor is great. she is treating the symptoms and not the numbers. Don't get me wrong, she is still checking my levels, but we are finding out what numbers I am most comfortable at.. She will not send me to an endocrinlologist because she cannot find one in my area that she trusts. They only want to treat diabetics and want to only look at numbers and not symptoms.Try taking your temp. every hour of the day or as much as possible when it is low or high the same time every day, that is the time of day you want to get your blood work. This is when your thyroid is most stressed and will show more accurate numbers. good luck and find a good medical care provider that is willing to treat your symptoms and not your numbers. this is the most important issue when seeking help. Look for a younger internist. They seem more knowledgeable than established endos or general practitioners. Remember, you have to take control and do not go back to any doctor that won't be willing to treat your symptoms. Good luck and I wish you well.

[Eketch]

Just saw the timing of this post...hope everything worked out

[Eketch]

I had a similar problem because they only based it off of my TSH number.Turns out I was over medicated and had the same symptoms along with debilitating anxiety. My suggestion would be to try to get blood work done when you're having the symptoms if possible...I know Quest Lab centers take walk ins and if you can get a read during the symptoms it might show elevated levels. I would also not go back to this doctor you deserve to feel healthy and happy and if he refuses than that's not acceptable! there has to be another solution to preventing the return of cancer than over medicating you. I will tell you after being on Synthroid for just over two months I feel better than I have in a few years!

keep trucking you'll get there!

Emily

[kastle875]

All...great reading here...wonderful that so many are williing to give feedback...

I'm struggling with what I think is some kind of thyroid disorder and could use a hand...I have recently starting getting dizzy spells...anxiety...and have a partiularly dry skin on my face, such that when I get out of the shower I look like I have severe sun burn...  It appears that any stressful situation (work, personal, etc) woorsens the symptoms such that I have a hard time concentrating.

I have an appointment with an endocronologist in January and I'm trying to educate myself as best as possible before going...

So, some questions...

- my t3 uptake is 37 (ref 22-35), is that normal (male, 44, up until recently very good health)
- my TSH 3rd generation is 1.63 (ref .40 to 4.50)
- is it possible that this can show itself at times and be fine others?  The symptoms appear more prevalent during the hours of 9A - 7P or so...typically evenings symptoms subside or even disapear and I feel like myself again.  
- alcohol seems to lessen symptoms...2-3 drinks (beer/wine) or so.
- I exercise fairly regularly...run about 3x a week, 30 mins or so

Thanks for any feedback!

Good luck to everyone here working on their own issues!

Sincerely,
Kastle

[Liz94]

Something similar to this was happening to me awhile back only not to that extreme that you are having. But what I did was start alternating doses of my synthroid. I asked my doc if it would be okay to try that and he said I could as long as my bloodwork kept in range for cancer suppression.  I now take 137 mcg of synthroid on M, W, F and 150 mcg on T, Th, Sat and Sun.  It made a huge difference in just that small amount.  It took about 2 months but I feel so much better.

[Barb135]

I agree with the posters who suggested that your dosage of cytomel might be too high.  Why was cytomel prescribed in the first place?  Do you have a conversion problem?  

You could try cutting your dose in 1/2 when you begin feeling hyper and see if that helps. Cytomel is very fast acting and leaves your system quickly, so adjusting that dosage would have a faster effect than adjusting the synthroid/levo.  

I also agree that it would be good if you could post your labs - TSH, FT3 & FT4

[stella5349]

Where are you located?

[milesprauer]

Wow, this list is an education.  I'm so glad I'm on it!  Despite trekking around to various doctors, I haven't had solid information like this about anything that's been happening to me.  Thanks so much!

[goolarra]

Ooooh, our old friend TSH. "the main number".  This is a big part of the problem we have in dealing with our doctors.  TSH is a pituitary hormone, and as such, can be influenced by any number of things in the thyroid/hypothalmus/pituitary feedback mechanism.  T3 (as tested by FT3) is the most biologically active of the thyroid hormones followed by T4.  Diagnosis and meds adjustments based on TSH alone are a prescription for disaster, and in my opinion, irresponsible.  Why look at a pituitary hormone to treat a thyroid problem?  TSH used to be the "gold standard" in thyroid testing, but with improved and cheaper FT3 and FT4 testing, it needs to be knocked off it's pedestal.  If all your doctor cares about is TSH, he is painfully out of date, and his arrogance is merely covering his incompetance.

[milesprauer]

This is very helpful.  Sounds as though you've had some of the same experiences that I have.  The problem is that my endocrinologist WILL NOT allow a lower dose than 100 mg.  He says that's what I need to ward off the return of the cancer, although I had a very small nodule wholly enclosed by the thyroid.  He's told me that if I insist on lowering the dose at all I can find another doctor.  This, after much experimenting with lower doses and numbers.  His take is that the numbers are okay, so how I feel (which he grants can be very different than what the numbers indicate) is secondary--that is, irrelevant.  

I'm asking my internist today to prescribe a full blood workup for thyroid.  I'm very happy that list members have volunteered to read my numbers, as they've become nearly opaque to me.  The main number (TSH?) is around 1, which is what the endocrinologist thinks it should be.  I haven't had the other tests for a while, though.

I don't think I'll be working with this endocrinologist any more.  He's rather famous--was written up as an inflexible, arrogant person several times on another thyroid discussion board that I was on for a while after the surgery.  But FINDING another endo, necessarily in another town, will be a job.  I'm trying.

[Cheesum]

Yes Milesprauer... definitely INSIST on a change of dose.  Don't take "no" for an answer.  But work toward a long-term adjustment (maybe 4-5 weeks at a given dose) rather than the roller coaster.  Start low and work up -- not on again/off again.  

I've had those same hyperthyroid symptoms you described.  ALL of them.  I found that the hypothyroid symptoms are much more tolerable than the hyperthyroid symptoms.  My hyperthyroidism was induced by the meds.  Under physician care, I kept cutting back, back, back every few weeks.  But if I were in your situation, I would start very low (12 or 25 mcg) and work up and I would try to stay on as low a dose as is comfortable.  Your physician is calculating a dose for you?  How about you identify the dose based on your symptoms?

Oh, also, I thought I saw some new medical journal articles about thyroid and cancer.  I wonder if your endo has read the latest.

[Smilerdeb]

I agree with the above postings.
Most Docs/Endos DONT tell you that as our other body hormones change, our stress levels increase......that our thyroid levels go 'out of whack'.
I take the same dose for 5 weeks each time then on the 6th week....go a fraction hyper.
So on the 6th week I cut down the thyroxin by 12.5mcg weekely.
Not a lot but a BIG difference to me.
I was like you....cutting doses down here and there but you cant get a regular dose like that (as I found out) and you sway from cr@ppy hyper to cr@ppy hypo.
Not nice lol.
Anyway.......ask the Doc to decrease the dose of the T3 every 2ND week....maybe this will help.

And anyone who says they dont have stress is telling...'porkies' lol.

[milesprauer]

Thanks to both of you.  I don't have numbers offhand, will do new tests immediately this week.  If the list can comment on the numbers I'll be glad to post them.  

[goolarra]

I agree that you should post FT3, FT4 and TSH with reference ranges.

I sounds like you are slightly overmedicated.  Rather than stop taking your meds periodically for three days, it would seem logical to lower your dose just slightly so that you do not periodically go hyper.  Your doctor is being very insensitive...what good is it to have perfect labs (according to your doctor) if you are miserable?

Your doctor has to provide your lab results on request.

[gimel]

Thelma's right, we need to have a look at your latest blood test results and reference ranges.

[milesprauer]

Thanks, Thelma.  Everything helps.  I feel so alone in this.  

[thelma201]

I'm not sure, I wish I knew more about what you need when you have no thyroid.....but could you ask for a lower dose of T3? What does your blood work show, especially the free's? Endo's IMO= pigheaded, close minded, egomaniac..mine was anyway. 100 T4 doesn't seem like too much, but you may be getting a little too much T3? Hope you find some answers here. You came to the right place. And you'll get more info from members than the "docs" here.