[Stymie]

#1059711

Hi all. My name is Diane and I’ve been diagnosed with Graves’ disease in August. Had Rai in September, became hypo in December and put on 88mcg of levothyroxine. I was not feeling good after the first week of being put on the levo, but I had some serious stressors going on so I chalked it up to stress.

Endo did bloodwork again in January, tsh was 6.9, so he upped the levo to 100. I started having symptoms of being hyper, anxiety, nausea, tremors, palpitations, bowel issues, can’t sleep. I had a real hard time eating. Called the endo after being on for 2 days like this and he said give it a week and see how it goes. I started taking a natural anxiety med and that has helped, but I’m still having issues now a month later.

I’m just wondering if anyone here has had issues with levothyroxine not agreeing with them? I’ve read articles on people having issues with the fillers in the generic.

I had my primary run the thyroid panel for me yesterday to see where I’m at, my endo didn’t want blood work done for another month, and I’m really not happy with him anyway and made an appt for a new endo. So my pcp gave me a script for brand synthroid and have yet to fill the prescription as I’m going to Maryland with my daughter for the weekend and don’t want to start it until I get back.

I’m worried about starting the new prescription, but I also can’t keep feeling like doggy doo.

My last labs done by my endo were 1/18/13
T3 total 94 ref 60-166
T4free 1.49 ref .6-1.8
Tsh 6.95 ref .4-4.5

Any input would be greatly appreciated!!

Thank you,
Diane

[vanillasky]

#1176964

Hi Diane! Welcome to our support group.

From personal experience, I can tell you that when I’ve been hyp0, I was given generic Levothyroxine and had much complications with it, mainly going hyper very quickly.

I was told that these pills come from various manufacturers and seeing they are generic, the could be either less potent or more potent that Synthroid. When I am going now, the doctors at Cleveland Clinic insist on Synthroid and that only as replacement therapy. Reason being: they feel that you get a constant level of medication that is the true dosage. They only switch to Levothyroxine (generic) if a patient is allergic to the dye in the pills. As you know, Synthroid comes in different colors so sometimes people are allergic to the dyes, however, in most case they are not.

Just a shot but it could be the generic pills you are taking. I’d ask your doctor and see what he says.

Hope this is alittle food for thought and once again, WELCOME!

Karen

[Kimberly]

#1176965

Hello – As Karen mentioned, most doctors do prefer brand name thyroid hormone replacement products.

Another thought is that Tirosint is a fairly new drug on the market that is the same active ingredient as Synthroid, but it comes in liquid form. The *theory* is that absorption should be more consistent with a liquid tab. We haven’t received much feedback on Tirosint so far, but it might be worth discussing with your doctor if you continue to have issues with your current option.

Daily consistency in taking the meds is really important in finding the “sweet spot” dose that will work for you…so you definitely need to find a solution that you can stick with.

Take care!

[Stymie]

#1176966

Thank you both for your responses. I do believe its the Levo doing this to my body. I’m just waiting for my latest results from my pcp to start taking the synthroid brand name. I’m in Maryland for the weekend and the anxiety is driving me nuts. Just keep telling myself its all in my head and trying to enjoy myself somewhat!!

Thank you for listening to me vent!!

And thank you again for your help. I will keep you all updated as soon as I get my results!! Have a great weekend!!

Diane

[Stymie]

#1176967

Hi!

Just got back from seeing my new Endo, my appt got pushed up due to a cancellation. Yay me!

Anyhow she was great! She changed my prescription to Tirosint. And listened to all my concerns and seemed very knowledgable. I’m very happy! Although with all my notes and questions written down, I forgot to tell her about my heart palpitations when I drink alcohol! Ugh. Frustrating that I have this horrible memory!!

So she’s checking my cortisol levels as well due to my low blood pressure and nausea. So now I just get my blood work in about 4 weeks, and see her again in 6.

Hopefully the pharmacy will have my script ready tomorrow and I will be on my way to feeling much much better.

Thank you all for your support and help

Diane

[adenure]

#1176968

Yay! So happy to hear that Diane! Let us know how the Tirosint goes for you. I’m curious.

[judy]

#1176969

Hello – I take 137mg levothroxin my dr never changed my meds? In 2003 I had RAI 2 times (the first one didn’t work?) then had a storm was in critical care 15 days I have been to 5 different drs I tell them all I’m tired,trouble sleeping. no appetite, bones hurt.menstral cycle is way off crying all the time just feeling I have no one and all alone., THE WORST IS THE WEIGHT GAIN I hardly eat at all?? They all tell me everything looks fine…. Then maybe its all in my head, Boy I proably don’t make any sense – but it sure felt good to vent a little. wow it will be 10 years in June I’ve had graves!!:o

Crazy Judy

[vanillasky]

#1176970

Hi Judy, you are not crazy. Or call me crazy Karen. LOL!

Do you think you are hyp0? I mean, if the doctor never changed your meds, maybe your TSH, FT4 and FT3 are not up to par? You shouldn’t be gaining a ton of weight.

As far as the other symptoms, are you maybe perimenopausal? It could be. crying jags and menstrual irregularities are key when we are in that phase.

“They tell you all looks fine,” but some doctors don’t understand that thyroid levels are not just on paper that makes the difference. It’s how we FEEL. You could have a TSH of 5.0 and feel great. Another person could feel very hyp0!

Karen

[Stymie]

#1176971

Judy, you are not crazy.

From the moment I started the Levo I knew something was wrong.

If you feel that horrible, I would continue to look for a new doctor until you find one that will listen to you. No one should have to go through life feeling horrible. And if thus new dr didn’t listen to me that is exactly what I would have done, until there were no more endo drs fir me to see.

Have your drs tried anything else at all? Checked your cortisol levels? Vit d and b12?

Btw what are your numbers? Tsh t4 & t3?

I hope you get some relief soon.

I am not a dr but just trying to understand this whole process and be my Ian advocate so that I get the best possible care and just feel good in general.

Diane

[Kimberly]

#1176972

@Judy – Yes, as Karen and Diane mentioned, it would be helpful for you to know where your Free T4 and T3 are. Although TSH testing alone is fine for patients who are stable and feeling great, if you are symptomatic, your doc should be helping you find the root cause of your issues. Please don’t be afraid to be the “squeaky wheel” and *demand* answers! If you need another referral, the “Looking for a Doctor” thread has some great search engines that can help you locate a doc by city/state/zip code. Take care!

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