Update on Thyroid Issue - bit long and a bit of a rant

[kryptychyck]

Feel free to comment or offer some of your wisdom below!

Ugh - I was enroute to Boston on Saturday and as I was sitting in the PHL airport with my sister. We were chatting and my heart started to race. I asked her to count 10 seconds and I checked my pulse. It was 96 bpm. That is too high for me. My normal is about 50 - 60 bpm. I was nauseaous and I could not get my eyes to focus on anything. My sister was asking me if I was ok and I started to have a panic attack. I calmed myself down without creating a scene. I was ok for a while. Then when we were on the train to Boston South Station (from Providence), it all started again. This time I got really depressed and I started to cry. It was bad. All of this insanity added with the accelerated hairloss (other post here) and a steep drop in weight indicated to me that my thyroid medicine was wrong. I was taking 75 mcg of levothyroxine - generic (even though I refer to it as Levoxyl - the brand name). I decided I was taking myself off of the medicine ASAP. I just started thhis medicine Jan 9th.

I felt better on Sunday - a bit calmer and today I feel even more in control. I called the doctor's office and explained to them what happened. The person who answered the phone (nurse? receptionist?) asked what I was taking and I told her: levothyroxine. She got very angry (not at me) and informed me that none of the doctors ever prescribe generic because of the risk of having this type of reaction. She asked for the number to my pharmacy and said she would call me back. Well, she called me back and explained that my doctor did not write "brand name" on the prescription. I asked her about the side affects that I was having and she said that I would not have the problem with the Levoxyl. I asked her about the hairloss and she said, albeit not as confidently, that the Levoxyl will help with that too.

I am not so sure that I trust these people anymore. If it is such a strict policy and a huge deal about not prescribing generics because of known adverse reactions, why then did my doctor fail to specify brand name on the script?

I am going to search for another endocrinologist even though the one I currently see is supposed to be one of the best in the country. I felt very dismissed by him during my original consulation. I let that go because he was supposed to be the best. I had called his office last week and voiced my concern over the dramatic hairloss and I did not get anywhere. I am not asking for him to hold my hand, but obvisouoly something is wrong and he is not taking me seriously.

I am supposed to go to his office tomorrow to pick up the new prescription for brand name Levoxyl and some samples "for my troubles". I will go. I will pick up the prescription, but I will also be requesting copies of all of the tests and other information. I am getting a second opinion.

There. Thanks for listening. I am very angry at this point. I am not the type of person to sit around and wait. Hopefully I can get in with the group at the University of Pennsylvania Hospital asap. I had good luck there with my ENT surgeon.

 

[MCunningham]

Becky,

I'm so sorry to hear of your troubles... that is a pretty awful reaction!

I would definitely get a second opinion, or a third. Your health-- and sense of well-being and sanity!-- is too important to leave in the hands of someone you have even the slightest doubt about.

I hope you can find out what the problem is!! Keep us posted!

MC

 

[Worknprogress]

Oh gosh Becky, I don't have any words of wisdom but I wish you the best of luck in figuring out where you go from here.

 

[ImFiddY]

I also take 75mcg of synthroid. I take the generic. I had only been on the brand name due to the advice of my doc that the generic can cause some fluxuations. I tried the generic and found no difference. It's such a low dose that the flux does not bother me.

I have a thryoid goiter that I can feel and can tell when my levels are off when it feels like my throat is tight.

The doc told me he cannot give me any higher dose because it will cause heart problems. Hair loss is also a sign that your dose is too high. So I would suggest that you go have your levels checked again.

 

[mdbecky]

It sounds like the 75 might be too high for you. You are describing symptoms of too much thyroid hormone. Maybe do 75 6 days a week and 1/2 a pill the 7th day?

The whole "generics are the cause" is hogwash. With thyroid hormone, you just have to be sure each time you get a refill that the pill is the same manufacturer and some docs find that the easiest way of insuring that is to only write for name brand.

Sorry you are having to deal with an inept receptionist.

Becky

 

[SirenSongWoman]

I take 125mcg of Levothyroxine, after taking Synthroid for years. When my pharmacy put me on generic I questioned the switch, as I'd been told generic thyroid meds weren't reliable. The pharmacist explained that that USED to be true of thyroid meds but the exclusive patent on Synthroid expired. Now the generics essentially follow the same chemical recipe so there's no longer a difference between Synthroid and Levothyroxine. I had absolutely no issues with the switch and am satisfied. Still, it's always possible there could be an ingredient that causes a reaction in some.

I suspect what happened to you has nothing to do with your thyroid but you need to see a doctor who's willing to work with you to get to the bottom of this. It sounds vaguely like two things: 1) the panic attacks my late mother suddenly started getting and 2) the weird racing heart issues I got when I ingested sinus meds and too much caffeine in the period of about 6 hours. I'd be sitting still, quietly reading a book, when all the sudden it would feel like a fish out of water flopping around in my chest. I actually went to the emergency room because I didn't know what caused it.

Please let us know.

 

[horseshowmom]

So sorry to hear of your troubles. My daughter has been on Synthroid since age 14 and we've been to 2 different endocrinologists and 2 family practice and they have have definitely all said NEVER<EVER take a generic. So, I hope a simple medication switch is all you need. Are they going to re-check your levels when you go in? My DD 1st doses sent her TSH from 17 up to 42!
That being said....since all doctors say the same thing...how did yours *forget* to specify namebrand? I know they are human, but the office certainly should have been much more apologetic vs. accusatory.
I'm so sorry you feel it's time to find another doctor...I know from personal experience what a hassle that is. But I've learned from watching my DD interact that trust is a hugely important element and you sound as if you've lost yours.

If you were in NC, I could give you an awesome recommendation for an amazing younger, female endocrinologist! I did find her on the Internet by reading patient comments, checking board certification ,specialities,state ratings, etc, so I'm certain you will find another, better match for you quite easily!

Good luck!

 

[twinkletoes129]

Hi Becky! I'm so sorry to hear what you went through, that must have been so scary!! Those symptoms are definitely that your thyroid meds were too high making you hyperthyroid and I also agree that you should ALWAYS stick to brand name. Brand names are MUCH more reliable in dose, in formulation and consistency and in the way they work in your system. Given that you just started taking your thyroid meds on Jan 9 and it's only February, I find they may have upped your dose to 75 mcg too quickly. I don't know how high your TSH levels were but generally they should have started you out on a lower dose and upped you gradually while checking your thyroid levels and symptoms. I think that going to 75mcg in less than two months is a little too quick and can also result in your symptoms. I'm also surprised that when they gave you a new brand name prescription that they didn't check your levels first before giving you a new script. If they had rechecked your levels they might have realized they needed to lower your dose to say 50 mcg (this is just an example of an adjustment) and slowly work your way up IF need be. I also agree with Parkercp that a high dose can give you hair loss, also each brand can have slightly different side effects in your system, one may increase hairloss initially (and sometimes chronically) and another may not and actually resolve hair loss as it stabilizes your thyroid hormones which is the way it should work. But a good endocrinologist should work with you on all of this BUT they are hard to find. Check out Mary Shomon's books to get you up to speed on thyroid disorders, particularly hypothyroidism. She has dealt with hypothyroid disease herself and she is such an advocate. Also, check out "about.com" for hypothyroidism, she posts alot of articles there and I think she may have a way to find some good endrocrinologists in your area. I hope you can get into that hospital it sounds promising. God bless, and keep us posted on your progress. I'd love to hear that you got this worked out and you're on your way to a great recovery. You have gorgeous hair by the way!!