[Crzrmom July 17, 2012 at 9:12 am Post count: 2]

#1059205

I am new to the GDATF site and forum. I enjoy reading all of the posts from everyone, it makes me feel a bit more “normal”. I feel far from normal almost everyday. In August of 2011 I was diagnosed with Graves disease. My scan and uptake showed ridiculously high levels of thyroid hormone and thus began my journey. I had an endocrinologist assigned to me, he was a nice guy, but just wasnt a good fit for me. He kept telling me that my weight gain was a “calories in, calories out” issue. I swear I have never gained weight so quickly, about 7 pounds a month. I am now, a year later, almost 35 pounds heavier than I was last August. This is a very discouraging situation because I feel that I don’t eat more than I had in the past, but I am less active because I am so exhausted after a full day of work. I have added in some activities like bike riding and walking with my family, but most days that takes A LOT of effort to do. I am currently on 30 mg of Methimazole with an amazing new endocrinologist and my April bloodwork showed my at T4 2.23 from a 3.3 to begin with last August, my free T3 at 5.3 from a 9.4 last August and my TSH was .006. My June T4 was at 1.32 and my T3 was within normal range (can’t find my lab results on that one) and my TSH was .02, so things are on the move and we are going to hold steady on 30 mg, but it seems like my symptoms return with a vengence every so often. One day I am feeling great, up and doing lots of stuff, and the next day I am so tired I can barely stay awake. I have taken 3 hour naps recently, and I have never in my adult life taken a 3 hour nap unless I was sick. This is where I have come to the forum desperate for answers. Is this normal? Do you feel ok and then feel bad again over and over again? I have read people speak of the roller coaster, but am wondering if my marriage can handle this ride. My husband says I am irritable, that he doesn’t understand why I am sleepy all of the time and all I can say is I think it is my thyroid. I don’t know how to help him understand what I am going through, I have recommended he read articles from your site, that he come to appointments with me, but this doesn’t seem to help. I am exhausted from trying so hard to be “normal” and sometimes just wish someone understood what I was feeling. I am a teacher and am home for the summer, so the lack of structure doesn’t seem to be helping me either, it is almost like my body said, “Ok time to rest now, then we can be ready for school in August.” At what point do I need to talk to my doctor about the returning sypmtoms? Do I just wait until my appt next month, or call now? I feel like everything is so “up in the air”
Thanks for listening,
Desperate for Anwers in Idaho

[KimberlyOnline Facilitator July 17, 2012 at 10:00 am Post count: 4294]

#1172942

Hello and welcome to our forum. Yes, this journey is often a “two steps forward, one step back” type of process. HOWEVER, since your symptoms are obviously significantly impacting your quality of life, I would suggest calling your doctor’s office and telling them you would like a new set of labs ASAP. Everyone responds differently to Methimazole, and you definitely want your doc to adjust the dose before you head into hypO territory. It sounds like you are doing a great job of documenting your symptoms, and I would mention *all* of these you your doctor. The more specific you can be, the better. “I need a 3-hour nap to get through the day” is more helpful to a doctor than “I’m tired”.

By the way, your husband might find this bulletin interesting. It’s called “An Open Letter to Husbands Of Graves’ Patients” and was written by the spouse of one of our former volunteers:

(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://gdatf.org/about/about-graves-disease/patient-education/an-open-letter-to-husbands-of-graves-patients/

Also, if you do a search for “weight” using the search posts feature in the top right-hand corner, you can see that this is a concern for many patients. Having experienced this issue myself (and as a former Weight Watchers leader!), I personally believe that for many of us, there is more to the equation than simple calories in, calories out.

Take care – and please check back to let us know how you are doing!

[Crzrmom July 17, 2012 at 10:49 am Post count: 2]

#1172943

Kimberly,
Thanks for your prompt reply. I have an appointment on the 8th of August with new blood work, should I wait that long or call now? I don’t want to always be reactive to every little symptom, but also feel like I can’t live in this limbo forever either. I am actually looking into Weight Watchers and was wondering if you felt you had success with the program with your Graves? I would hate to pay for something to just be discouraged by the progress.
Thanks Again,
Heather

[KimberlyOnline Facilitator July 17, 2012 at 11:45 am Post count: 4294]

#1172944

Hi Heather – We’re fellow patients, not docs. But if I was experiencing symptoms that significantly impacted my life, I would personally want a new set of labs ASAP, rather than waiting.

As for the WW, I know of some patients who have had success with the new program, but I personally didn’t. They often run specials where they will waive the joining fee, so you can always try it out for a week or two without a significant investment.

Take care!
Kimberly

[snelsen July 17, 2012 at 11:58 am Post count: 1909]

#1172945

I vote for calling the office, saying what needs to be said to get the labs, and also what you are experiencing. “I notice profound changes, sometimes I want to sleep three hours at a time.” You do have to get the attention of the voice answering the phone so the message is relayed promptly with some degree of accuracy. As Kimberly said, I hate to think you might be moving into hypo territory, but that is its’ own special hell-along with being hyper.
I am so darn sorry that this is your summer! This is all so hard

Anyone I have known has had excellent success with WW. (except Kimberly! it just wasn’t right for her.) I’d give it a whirl, cause it is taking ACTION, and it is not some way out crazy thing. Some people stay on it for life. In the future, it may not even be an issue for you, but right now, it is.!
Do join us and continue to write. This forum rocks!
Shirley

[Carito71 July 17, 2012 at 12:21 pm Post count: 333]

#1172946

Welcome to the forum. It is sad that you have to join us but if you are going to have GD this is a good place to get support

I’m new too. I joined about a month ago. I’m also on Methimazole 30mg/day. My TSH is almost non existent and my FT4 and FT3 are high. My next appt is in early August when I will get labs as well.

I do feel better at times and tired/non well at others. I do what I need to do when I get the energy and then lay low when I get tired. I know it is hard to do with work but it is good that you are on summer vacation right now. I think our bodies need the time to heal and sleeping is very much needed. I don’t know about you but I had 2 weeks of insomnia and well I still wake up some times at night and can’t go back to sleep so making sure I get my sleep is important.

I hear you. I had to tell my husband the other that I pretend to be normal because that is what everyone else expects but that I’m not … not yet (I’m hoping to be normal one day). He is super understanding but even then he forgets at times that I’m doing everything in my power to carry on with life and GD at the same time. As I write to you right now, I’m struggling with ear problems and I too feel tired. I could probably sleep a couple of hours.

I agree with the other messages though. If you have had a drastic change you should run it by your Dr. I don’t want to scare you but I’ve read that feeling tired when on Methimazole can be a symptom your Dr. wants to know about b/c it could be liver related. Anyway, you are probably just tired from everything. I know I Am but run it by your Dr. Also, I don’t know if your Dr. told you this but while on Methimazole we need to stay away from people with colds, the flu, sick b/c they can pass it to us. Also, we need to stay away from people who have had a live virus vaccine, like Polio vaccine (oral), smallpox, varicella zoster (shingles – Zostavax).

I hope you feel better soon. I know that the Methimazole doesn’t seem to help right away (took me about 3 weeks to start feeling a change) but I’m told that there is hope for a recovery.

Keep us posted.
Caro

[Carito71 July 17, 2012 at 12:26 pm Post count: 333]

#1172947

One more thing ….

I know your are struggling with weight issues but I do recommend a healthy diet. It helps us get energy. I know that when we are tired we tend to want to eat something that will give us a boost … usually something sweet but in the long run we end up feeling tired. So we need last of veggies, fruits, beans, nuts, fish, chicken, protein, etc ….

I’m having to eat a lot lately because in 1 month I lost 10 lbs. My body needs the protein and that is one thing I was told by my Dr. to eat a lot of. I buy protein bars from the store and eat them as snacks. I’m allergic to Gluten so I buy the gluten free kind.

Did your Dr. tell you what to do regarding exercise? Mine told me to limit my activity and that I could not exercise until he gave me the go ahead.

Hope this helps.

Caro

[KimberlyOnline Facilitator July 17, 2012 at 2:18 pm Post count: 4294]

#1172948

Just a quick clarification that I did lose weight with WW, became a leader for the organization, and maintained for several years. It wasn’t until after my Graves’ diagnosis that I started having problems with weight creeping on that I just wasn’t able to lose.

The new WW isn’t working for me anymore, but to be fair to WW, the *only* thing that’s worked in the last few years is to restrict my calorie intake to the point that I was literally hungry all day…which I’ve decided I’m not willing to do anymore, and I certainly wouldn’t recommend to anyone else.

Some thyroid patients have no issues with weight…and others have temporary issues with weight gain, but traditional weight loss programs seem to work just fine for them. Unfortunately, I’m not in either of those categories! Your mileage may vary.

[Author]

Posts