[Lillly]

#1018441

Hello Everyone!

I am a new member and I am reaching out for some help or advice. I am 23 years old and I was diagnosed with graves three years ago. I really had no clue what a thyroid was and I was totally freaked out when I found out I had Graves disease. Then the doctor made it sound really simple and I was like oh, this won’t be so bad. Well I was wrong! I take levothyroxine and I have not been on the same dosage for 12 weeks in a row. The dose either makes me too high or too low. I got so frustrated a year and a half into that I stopped taking it for a short time and then I realized that was definately the wrong thing to do!!! I had RAI and gained a good 70 pounds….not cool for a 21 year old. Since the RAI, I have graduated college and I am now a Police Officer. I work crazy hours and have a lot on my plate. I have also lost about 50 of the 70 pounds that I gained. I have been seeing a great doctor and she has been working with me. She just told me today that she is going to send me to a specialist because my TSH levels have been too low for too long. I was on .403 microgram a day 12 weeks ago and she bumped it down to .175 six weeks ago. The first three weeks of .175 were aweful!! I was moody and did not feel good. I went back for another blood test yesterday and the results came back and she wanted to take me off the medication completely. I told her my body could not handle a shock like that again and we compromised at her lowering the dosage to .125. I am on the go 24/7 and I am on call 24/7 365. The dose changes are starting to make me very fatigued and it is getting hard to put in my 16 hour days. I love my job and don’t want this disease to affect it. When I was on the high dosage it was great becasue 16 hours was a breeze and I felt great. When the dose was cut in half it was like I was going through sometype of withdrawl. My doctor is saying that my Graves is possibly back and that is why she wants me to see the specialist. All and all she is probably right because lately I am constantly tired, but don’t sleep through the night and my night is usually only about 4 to 6 hours long. I am also having the most horrible dreams, I am not sure if that is related but it is new for me. My eyes feel gritty and my hair is course and falling out. I hate to admitt it but I have also been extra moody lately.

I guess after all this venting, I am curious if my Graves could be flaring up again and what my next steps are? I do not want to gain 70 pounds again and cant go through fatigue I went through my last go around with this disease. The other thing I am most flustered with is trying to make people understand I do not feel good. I look fine so people assume I must be fine and I am just being whiney (which would be very out of character for me). I don’t know how to explain to people that I am not at 100% even though I so desperately want to be.

If anyone has any advice that would be great!

Thanks so much!
Lilly

[Kimberly]

#1064853

Hi Lilly – I have to run, but wanted to go ahead and approve this post so that you can start getting responses. I’ll check back this evening.

Seeing the specialist sounds like a good start. You need to figure out if indeed, your Graves’ is active again…or if further adjustments to your replacement hormone will give you some relief.

In the meantime, is there any way that you can cut back on the 16-hour days? I know that when I was feeling my worst, even an 8-hour workday was a challenge! Remember that you have to take care of *you*…or you won’t be in a position to take care of everyone else!

[snelsen]

#1064854

Hi, I have to run also, bus, train, plane. Just wanted to ask if you re going to an endo, and if your dose has been changing during 12 weeks, it could be a problem. The TSH and T4 labs should be drawn AT least 2 months apart, three is better, otherwise they are not a good reliable indicator to change doses. Sorry, maybe I will have time to write tt the gate if Seatac still has free wifi

[savtanee]

#1064855

I am also a new member as of today. Had my RAI in November, became severely hypo and have been on incresing does of Synthroid since Feb. Not fine yet,
I wanted to suggest that you use Syntrhoid rather than the generic. My endocrinologist specifes it as the 15% allowable difference in a generic from a brand-name can make a difference with thyroid disorder.
Hope you find answers and feel better.

[snelsen]

#1064856

OH YES! I TOTALLY AGREE. USE SYNTHROID, IT HAS BEEN ROUND FOR YEARS, HAS MANY DOCUMENTED STUDIES BEHIND IT, AND THE DOSE IS CONSISTENT BY THE MANUFACTURER. MANY MANY EVIDENCE BASED STUDIES DOCUMENTING THIS.

I missed my flight, the only flight to Sun Valley today. Had to pay $100 change fee for tomorrow. There was a breakdown of our "new" but not entirely without problems, light rail to the airport. Then security was a double nightmare, even @ 1100, then I watched them close the flight and give away my seat. I guess 20 years from not it won’t make any difference……..
My eyes are watering, as usual, but it is not from crying, it is from good ole’ TED!!!!!!

[Kimberly]

#1064857

@ Shirley – Oh, no! So sorry for the extra travel frustrations! Hope that the rest of your trip goes smoothly!

@ Lilly – Savtanee and Shirley had a good suggestion to make sure you are using a brand-name drug. With generics, you may get a different product from refill to refill…and the amount of thyroid hormone that is absorbed by your body may vary with different formulations. You might also consider whether any of your other prescriptions have changed, which can affect thyroid hormone absorption. Also, another thought would be to keep a very detailed symptom diary by day. If you can get copies of your labs, seeing how your hormone levels correspond to various symptoms might help you put the pieces together in terms of finding the *optimal* dose for you.

For patients who have been through RAI, it is *rare*, but not completely unheard of, for thyroid tissue to regenerate and for Graves’ antibodies to become active again. So it’s definitely a good idea to get a specialist involved to help you figure out exactly what is going on.

Finally, I noticed that your screen name had 3 "l’s". I wasn’t sure if you did that on purpose, but I didn’t want you to get frustrated trying to log in as "Lilly" if it was a typo! Welcome to the boards…feel free to stop by and ask questions, or just to vent if you need to!

[snelsen]

#1064858

hi Lilly, Lillly! I had a couple more thoughts.
Synthroid and/or any ATD should be taken first thing in the morning, with a glass of water. Wait 1/2 hour before eating. This consistency will make the lab values more reliable. The half life, and the way the drug is absorbed, really makes a difference. It should be on the bottle to do that. If you absolutely cannot do that, must have coffee with 1/2 1/2 (which I love) try to be consistent with whatever regimen you choose, but the suggestion above, empty stomach, glass of water, first thinkg int he morning is the most reliabel thing to do.
And, when you see the endo, ask for a referral to an ophthamologist who is familiar with Graves’ and TED. Also ask him/her to dictate a report to the one you you end up going to-have your records sent there.

Re weight. I found that the hyper energy that I kinda loved, as well as hated, is not the energy we want. After my thyroidectomy, I gained the weight I lost being hyper, which was a ridiculous amount, and definitely was muscle wasting, then ended up about right, maybe 5 lbs over. Hard to evaluate, cause I got pregnant, and I gained 40 lbs c each kid.

My weight is fine, now, but like Kimberly, I learned that keeping a log is a very humbling experience, and kept me honest, but surprised, at the extra stuff I ate. One bad habit I had, was to finish what the kids did not eat if I liked it……….
Shirley
Kimberly, thanks for your empathy @ the dumb flight.

[Harpy]

#1064859

My partner checks her Heart rate & Temp first thing upon waking every morning, I keep a log and chart these parameters.
Body temp is a difficult indicator because it changes for women with their cycles so is a good longer term indicator, the 2nd or 3rd of Mensus is considered the true temp to compare from cycle to cycle.
The resting heart rate is excellent as an indicator of changing symptoms as it may show an increasing trend well before you feel any outward symptoms as the heart rate is one of the first things to respond to changes in thyroid hormone levels. Knowing your heart rate has been increasing for the last week may allow you to be more proactive in your management of the condition, and I would encourage everyone with a thyroid condition to keep a log of resting heart rate along with other symptoms they may feel.
I know that all this monitoring adds up, but it pays off in the long run to keep a tight reign on it as its always harder to get the balance back when it goes out a long way and may help you to reduce the rollercoaster ride, to a nice undulating country drive. It also gives you more knowledge about what your body is doing and knowledge is power.
The heart rate varies with gender, age, fitness level etc. and within the individual it also has a daily cycle being the lowest at about 4am and highest in the early evening (ignoring exercise times as it naturally goes up then), but it is consistant within the individual.
Best time is first thing in the morning, note it will change a bit if you wake earlier or later, so if you can be consistant that will give the most accurate result, don’t know if you can post charts here, but I can send our record as an example if anyone is interested. When you wake, before moving too much, just find a pulse and check the beats per minute, it can be subject to feedback if you think about it, so the the first week or so may be all over the place as you get into a routine, we’ve found it may vary around/up to 5bpm from day to day, but it is the trend you look for so charts are good as you can visually see any trends.

[Lillly]

#1064860

Thank you everyone for all of your responses!!! The support is great!!!

The good news is I have a meeting with a endo on August 25. I am keeping my fingers crossed hoping that she can give me answers. I will definatley talk to her about getting on Synthroid versus the levothyroxine. I was told a long time ago that the name brand contains more hormone but did ask questions when my doctor put me on the levothyroxine. I love the idea of keeping a log. I will have to get into a routine but it sounds like that might get me to understanding my body a whole lot more…thank you for that suggestion!!! I take my dosage of levothyroxine when I start my day, depending on my shift rotation that is either in the morning before I go to work or at night before I go to work. I try not to change the time of dosage to much but for two weeks out of six I am on a day shift. I tried taking it at the same time but I can not take it before I sleep bcause I get so insatiably hungry and I would wake up and need to eat. I have to run, but I will keep all you supporters updated if the doctor gives me any answers.

Thanks,
Lillly

P.s. Sorry about the flight trouble ” title=”Sad” />

P.s.s. Does anyone think that night terrors is possibly related to a thyroid problem?

[Kimberly]

#1064861

Lillly – Yes, I have heard of night terrors being associated with hypERthyroidism. That’s good news that you have an upcoming endo appointment so that you can get things checked out.

Does your endo have you do labs *before* your visit? Or does he/she order labs after the fact? It’s nice if you can get the labs done prior to your appointment, so that you can spend the time with your doctor reviewing the results…instead of trying to make sense of what they tell you after the fact over the phone!

[Author]

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