[heatherem]

#1060143

Hi Everyone,

I am new to this forum and not totally sure what to expect but I’m going through a tough time and could really use the support of people who know what this is like. Feeling really alone right now…

I was diagnosed with Graves disease in 2008. At the same time they found a nodule on my thyroid that was benign but growing and finally I had a thyroidectomy a year and a half ago because I was having a difficult time keeping my levels constant and the nodule was getting to the size where my endo was concerned.

When I was first diagnosed I had weight loss and extreme anxiety. I used to obsess about cleaning and would spend pretty much my entire life cleaning and disinfecting my house. I was unable to eat out or eat food that other people cooked for me because I was nervous it wasn’t clean. I was seen by a bunch of people and the diagnosis of OCD bounced around a lot before they found out it was my thyroid. I started on methimazole and felt better (no more cleaning!) for a while and then went in to remission (or more than remission I guess) and was hypothyroid. Gained weight, felt depressed, tired all the time.

Following my thyroidectomy I started Eltroxin (a brand of levothyroxine in Canada) and felt better than I had in years! I was happy, I had energy, I was back to my normal self since before the thyroid madness started. For a while after my surgery I was followed by my endo and then she transfered care to my family doc because I was doing so well. On our first visit about my thyroid he switched me to Synthroid because he was more experienced with it and he said he likes it better. I immediately felt the difference. I was tired, I couldn’t concentrate, I started to retreat in to myself. I am normally very outgoing and all of a sudden I became self-conscious, shy and sensitive. I felt like I was living in a fishbowl and everything was happening around me. My blood test 6 weeks later showed that my TSH was too high (I forget the number) so he increased my dosage of Synthroid. 6 weeks later my lab results were normal and my doc said everything was fine.

It is now a couple of months later and the fatigue and concentration have improved but my affect and mood have not. I am not outgoing and conversations with people are difficult. I also have those obsessive thoughts I was having before, not about cleaning this time but about social interactions. When I have a conversation with someone it repeats in my head over and over and over again. I analyze every word I said. Sometimes I even write out the conversation and read it over and over again to make sure that what I said was ok (sounds totally nuts I know!!!!). I have had suicidal thoughts that I obsess over as well (don’t worry, I’m not suicidal right now!!!).

My boyfriend and I have been dating for just over a year, we met a couple of months after my surgery when I was feeling normal. He just broke up with me last Friday because he thinks I’ve changed and he doesn’t believe that there might be a thyroid-related explanation for my behaviour. Before all of this we talked about moving in together and having kids. I am totally shocked and heartbroken, not to mention angry that this disease has done this to me.

I guess I’m just looking for a bit of support and for someone to tell me that I’m not nuts! Also, has anyone else ever experienced anything like this? Could it be that I just do better on one brand of levothyroxine vs another? I have an appt with my doc in two days and I’m going to ask him to switch back. I just want my life back.

Any thoughts are really appreciated I’m so glad I found this forum.

Heather

[Kimberly]

#1180722

Hello and welcome! Hopefully, you will get some responses here from others who have switched brands of replacement hormone. I’m still taking anti-thyroid drugs myself, but I *have* heard stories from other patients who feel their quality of life was significantly impacted from switching brands of replacement hormone.

Rarely, patients can react to the fillers/dyes in color-coded replacement hormone tablets. If you are taking a color-coded version and can’t get switched back to your original med, you might at least ask your doctor about taking the non color-coded version (there is usually one) and adjusting the # of tabs taken daily to get you to the correct dose.

Another thought would be to get a complete physical *just* to rule out any other possible underlying causes. You know your body and you *know* something is off, so please be persistent until you get the care you deserve. And if you feel those suicidal thoughts coming on again, PLEASE take advantage of local resources that are available. Here’s one option in Canada:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.suicideprevention.ca/in-crisis-now/find-a-crisis-centre-now/

Health issues can absolutely put a severe strain on relationships; we unfortunately hear many stories like yours. In some cases, the relationship reaches a reconciliation point once the underlying cause is found…but in others, the patient might realize that he/she would rather move on without that particular partner.

Wishing you all the best – please check back to let us know how you are doing!

[barbra]

#1180723

Hi Heather,

I wish I had some kind of answer for you but I went with the RAI just recently and I am not hypo yet.
I just wanted to tell you that you are not alone in your misery. There are all variations of Graves on this forum with different solutions, RAI, TT or meds.
If you read the posts you’ll see that many here are frustrated and unsure, so don’t feel that you’re alone.
I hope you get some relief soon and can get back to normal.

Sending good thoughts and hugs your way.

Barbra.

[Raspberry]

#1180724

I hear ya Heather. When I calculate how much thyroid problems have cost me emotionally, financially, and socially it’s just very depressing to me. All we can do is start from today though. Take a stand – you have every right to tell your doctor you want back on the medication and dosage that worked for you before. With GD we have to put lots of effort in to being our own advocates even when we least feel up to it. I hope things get better for you soon!

[Stymie]

#1180725

Heather,

I too get those obsessive thoughts in social situations. I go home and analyze everything that came out of my mouth until I find SOMETHING I did wrong and then get extreme anxiety over it.

I know all of this started after I started taking levo after my Rai. I suffered terribly on that drug and after switching endos I was put on tirosint. No fillers. Which it seems I had a problem with on levo.

I have gotten much better since switching meds, but I am surely not back to myself. I try to explain this to my husband family and friends and they just don’t seem to understand. They think since my numbers are in the normal range that I feel fine. And I don’t. I’ve stopped trying to explain this to the people around me. It’s just too hard for people you love to look at you like you’re crazy.

I hope once you get back on your previous med everything can get back to normal for you.

Keeping you in my prayers.

Diane

[npatterson]

#1180726

Hi Heather, I am glad to see that someone knows about Tirosent. It is the newest FDA-approved medicine on the market right now. It is a gel cap, and has no fillers at all. All the brands have some type of filler, and they are all different.

There is no reason why your doctor shouldn’t switch you beck to your old medication that worked so well for you. If your family practice doctor isn’t comfortable changing you beck, get an appointment with the endo you used to see.

Take care,

Nancy

[jaqeinquotation]

#1180727

I’m so sorry to hear that you are not feeling well, sorry about the breakup and I hope you feel better soon.

I’m in Canada also and my brand is Eltroxin also. My dose was increased from 100 to 125 mcg’s. i didn’t realize until after that the prescription said “allow substitutions”. Once I did I asked the pharmacy not to make any substitutions however when the pharmacist brought the pills to me they were Synthroid. I told him I wouldn’t take them and showed him a pamphlet I got from http://www.thyroidawareness.com that stressed the importance of the Same medication (brand or generic), Same time in the Same manner everyday.
He still tried to convince me that if I switched I would be better off in case my dosage increases or decreases in the future that Synthroid is more flexible with their doses.

This just happened today so I was really surprised to read your post.
STAND your ground and insist to your doc that you go back to the meds that made you feel better.

[snelsen]

#1180728

I agree with jaqueinquotation. 100% .
REally helpful to hear from her “cause she is in Canada, taking same drug and had a similar experience. NOt quite like yours.

In the US, I have learned to remind (again and again!) my endo to write BRAND ONLY, or NO SUBSTITUTIONS, on the RX.

Seems to me that Eltroxin is your best thryoid drug, so I encourage you to insist on having it. I don’t know why on earth your GP would make that switch. You know how you feel, and Graves’ is SUCH a frustrating illness.

I take Synthroid, and it is ok for me. But you were doing beautiful with Eltroxin. Why mess with a good thing? I am so so sorry.

Is there any way you can just call that office, say you feel terrible on Synthroid, and you want to resume your original Eltroxin dose, and continue on Eltroxin.

Can you make this happen.

Usually the docs don’t care. I am hoping yours doesn’t either. Or, if you have the capability in your health care system, call the endo, tell him/her what happened.

Shirley

[heatherem]

#1180729

Thank you so so so much! All of your words of support and advice are more appreciated than I can put into words.

I went to my doctor on Thursday and have switched back to the Eltroxin. Not feeling better yet, just taking it one day at a time and hoping that I will soon…

I’ll keep you updated. Thanks again, you’re all amazing!

Heather

[snelsen]

#1180730

YAY!!! Nice work.
Shirley

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