[Bobbi]

#1063073

The TSH is a hormone that comes from the pituitary, part of whose job it is to regulate the amount of thyroid hormone in the body. It’s sort of a thermostat control over the production of thyroid hormone. Our doctors tend to use the TSH reading later on, as a guide to how well our meds are doing (or how well we are regulated on replacement hormone). The reason for this is that the TSH test itself can detect smaller amounts of TSH than the actual thyroid hormone tests can detect of thyroid hormone, so it is considered a "finer" measure.

The TSH, though, is also a kind of "running average" of our thyroid hormone levels, which can fluctuate even within the course of a day. So, it can lag somewhat behind when our thyroid hormone levels reach normal. Getting normal TSH levels really only means that you have normal thyroid levels, which is the important thing.

As to why you aren’t feeling your old self? There can be a couple of reasons, but the main one is that just getting TO normal levels is only the first step. Our bodies need time AT normal levels — weeks, if not months of time — in order to heal completely. It may help to think of hurricanes. The wind storm does a lot of damage. Just getting rid of the wind, however, does not leave things immediately normal. There is a period of rebuilding required. Think of hyperthyroidism as a metabolic hurricane wind, in your body. You have gotten the winds under control. Now your body needs to heal.

[Krystal25]

#1018171

Hello there, I haven’t been on in a while as I have been trying to do less research and focus more on staying positive and upbeat instead of reading internet posts all day!

I was recently diganosed with GD in Sept of 2010 and have been on methimazole ever since trying to get regulated. I am for the most part regulated with my T3 and T4 but my TSH level is still very low 0.08. My doctor believes it will come within notmal but just will lag behind which I am aware of. I am just wondering if it is normal to still feel not quite right? I feel a lot better than I did in the begginning but I still feel very strange. I almost feel at some points that I dissociate from myself which never happend before GD? Has anyone else had those same feelings? I feel like my whole personality/ self has changed drastically within 4months it’s very frightening. I keep holding onto the thought that once my TSH level gets regulated I will suddenly feel much better, but I am scared to think how much of a let down it will be if I don’t. I am still plagued with anxiety over the simpliest of things and feel panic quite often. I have tried yoga, mediation and other relaxation techniques but still feel the anxiety.

Any insight would be much appreciated!

Thanks so much for listening,

Krystal

[cornelius]

#1063074

It does take time with having to fluctuate meds to a correct dosage to get to the point we need to be to "feel normal" (whatever that is). I like the assimilation with the hurricane winds that was made. That is a great way to put it!! I have been battling with correct medicine dosages for nearly 8 years now, never seeming to find my thyroid levels in the normal range. It is a hard battle to fight, but hopefully this discussion board can ease your worries. I haven’t been on here in a while, regretfully, and am happy I have rejoined the discussions, because it really does help to discuss these issues with others who have been there!! Here’s to hoping you can find the right dosage of meds that brings you back to your normal self!!

~Christa

[snelsen]

#1063075

Hi Christa, I just read your post again. Can you clarify the time periods? You mentioned that you had been struggling with medication adjustment for 8 years. At first, I thought you meant your replacement hormone, like Synthroid, trying to get your TSH T3 and T4 in the right range. Then, as I re-read it, I saw that your diagnosis of Graves’ was in September 2010, and that is when methimazole was prescribed. So it is the methimazole med that you and the endo are trying to get right at this time?

My experience after my diagnosis pretty much reflects yours, plus Bobbi’s explanations are so good, kind of describing how the whole deal works. I do like her analogy of a hurricane. When I was toxic (hyper) I was pretty much a crazy woman in every aspect of the worst of Graves’. Heat intolerance, sleep deprived, voracious appetite, weight loss, anxiety, irritable to the point of not being rational-and extreme tachycardia (rapid heart rate) consistently running ln the 160’s. And it DOES take a while to feel like you actually will have a normal life again. Like you, I felt MUCH better pretty rapidly with the ATD (anti-thyroid drug) and the beta blocker (propanolol) to reduce my racing heart. All I wanted to do was BE NORMAL again. After 2-3 months, I felt like a hit a brick wall. I was much better, but not my old self. Unfortunately, during this hyper phase, everything about our lives is messed up, and that includes psychologically. In my case, I was very impatient with everyone, including my family, myself and the docs.

BUT IT WILL GET BETTER! It sounds like you have a very good endo who understands all the components of Graves’. and I think he is telling you the right stuff. Since you have done a lot of reading, you probably know that when you get to a "steady state" or a euthyroid state, the term for neither hyPER or hyPO, you will have some decisions to make which will depend on your personal preferences, and how you want to tame the Graves’ tiger. Which is possible! You will see from the board that folks have chosen one of the three options to manage Graves’. Surgery, a thyroidectomy, RAI, or continuing with ATD’s.
Do continue to write, I think it really helps. It sure helps me!
Shirley

[MissLes]

#1063076

Krystal–

Its like I wrote your post. I was diagnosed a month before you (Aug 2010), and I haven’t felt like myself since. I go from happy to sad in no time. I get so frazzled with a job that I loved before that I have considered quitting. My anxiety is ALWAYS present (those tiny butterflies in my stomach never seem to go away). And I have had 2 cases of "Graves Rage"– blinding, uncontrolable anger. Very scary. Very not me. My Endo added Lexapro to my meds this week, and gave me some Xanax to use when it gets really bad. I also drink a lot of camomile tea, and try to stay away from large amounts of caffine.

Keep in contact. Let us know what helps and when you start to feel better.

Les ” title=”Smile” />

[cornelius]

#1063077

Shirley, It was the original poster KRYSTAL who was diagnosed in Sept 2010. I was diagnosed with hyper thyroidism in Sept 2003…Grave’s @ August 2004 after my May baby (#2) was born…. Sorry for any confusion!

~Christa

[snelsen]

#1063078

I am the confused one! Sorry. But under the concerned about irritability post, I think I did respond with a long post to you!
Anyway, how are you today?
Shirley

[cornelius]

#1063079

Shirley, you did post on my "irritability" post and I appreciate your insight very much. I called the endo office and demanded a refill of meds. They said "Oh, well we had a cancellation on Jan 12at 8am so you can come then to get a refill order." I said, well, that will be 2 weeks or more without meds and I don’t think it’s a good idea. I spoke to the nurse about my concerns of being off meds and driving the distance for nearly nothing….so, I got a refill for the next 8 weeks in which I then go to see endo in Feb, which gives me time to be on the right meds for a little over a month before labs and a visit to the endo. Thanks again for your insistance on being "pushy," as it did help. Plus, I spoke to an Internal Medicine dr here in town that I have dealth with since I was a child and my children also see him (he is a pediatrician, also) and he said he would be willing to take on my thyroid issue case so we can handle it locally. I will probably just do that, since it seems like the trip to the endo is nothing more than feeling my thyroid, looking at labs and checking my reflexes. That is an expensive trip for that few of "medical practices" to be done…..in my opinion.

I am also having a procedure called a TEE ( some kind of scope being put down my esophogus to look closer at my heart) since I may have a small hole in the ASD of my heart….I knew this 2 years ago but never did anything to take care of it back then. I vowed to myself I would do better at taking care of myself this year…..let’s hope it comes back fine!! Thanks for being so caring!

~Christa

[snelsen]

#1063080

Christa! I am so HAPPY for you! And I am so relieved that you have taken care of yourself by being proactive about the meds.
Plus, a great and wise creative move, to contact the local doc whom you know well. I agree that he most likely can manage your thyroid issues, PLUS he has a vested interest in you and your family, so the all vital good communication already is established. He can always refer you to the endo if there some reason to do so. Or consult with the endo on the phone.
I am so relieved that you are back on your meds, with an RX that will keep you protected.

Do write after you TEE. I’ve had it, it is pretty easy. It will tell a good story about your ASD, the degree, existence or no, etc. etc. Gives better info than a regular echo for an ASD. Glad you are following up on that , too!

Of course, you are welcome. If anything I have said, is helpful, that’s a good thing! We can help each other on this post!
Keep writing!
Shirley

[carmenl]

#1063081

Hello there,

I figured I would piggy back on this topic as opposed to starting another.

I went to the doctor a week ago, because I hadn’t slept in 4 days. He prescribed ambien cr. I might as well have been taking a chewable vitamin.

So after a week of no sleep, yesterday,I went back in crying. I am an attorney, a prosecutor, and I felt I was going to lose my job. I couldn’t sleep, my heartbeat was in my ears, sweating, pulse was fast, pressure was high, couldn’t focus, didn’t want to eat, couldn’t work. Then every little thing started to bother me and I began to over-worry. That just wasn’t me!! I had to drag myself to work.

He said he couldn’t give me anything stronger to make me sleep, because he is an urgent care doctor. So he gave me 20 Xanax, drew some blood, and gave me a referral to a psychologist. I did get a little sleep in the couch….

This morning, the phone rings. Need you to come in, get more lab work and a referral for a thyroid ultrasound. I went in, weekend doctor says "I think you have graves disease." WHAT A SHOCK!!! I’m like, "Whats that." He says TSH is showing no reading. So my thyroid is over producing. I said, "i thought you are supposed to lose weight?" I haven’t lost a pound!! He told me about the thyroid killing stuff, the radiation, and the surgery options. (too much for me to grasp right now)

So anyway, I have an ultrasound on Tuesday and a new referral to an endo. Should i still go to the shrink?? I’m telling you, I thought I was losing my ind. My muscles felt like they were being squeezed by Friday.

I can now look back and say, oh wow, maybe that’s why i couldn’t sleep past 3am , before my insomnia took over. My dad is on that Methisole (sic) and diabetic. My paternal grandmother took synthoid for years.

So what has worked for the stress, anxiety, and insomnia for you all, while trying to get your levels back to normal?? Should I keep taking the Xanax?

Thanks, i am so glad i found you guys so early!!

Carmen ” title=”Confused” /> ” title=”Confused” />

[Kimberly]

#1063082

Hello and welcome to the boards! I do know of patients who have taken anti-anxiety drugs (under a doctor’s supervision) during the early stages of their Graves’. And even though you know now that there is a *physical* cause for your symptoms, it probably wouldn’t hurt to keep the appointment…if you can learn some coping strategies to help with the sleep and anxiety issues, that will be worth an hour of your time.

I just posted this link on another thread, but there is a great bulletin on the web site on the link between Graves’ and mental/emotional issues. To access the article, go to the home page at http://www.ngdf.org and click “Publications”, then click on “Psychosocial & Emotional Effects”, then click on the article “What’s Wrong With Me?”

The search option on this board is a great resource…and there are members here who have been through all aspects of Graves’ Disease, so feel free to jump in with any questions!

Oh, and as for the weight loss…not everyone who has Graves’ has that symptom. That’s actually a good thing, as the weight lost when we are hypER tends to be muscle mass. However, some of us (myself included) tend to struggle with weight issues during treatment…which can definitely add an extra layer of frustration to this whole process!

[cornelius]

#1063083

carmenl,
I have been on lorazepam for anxiety for about a year now, which I take at night to help me sleep and during the day as needed when having an extra stressful day. I have found it very helpful, because I, too, was having problems sleeping. And as we all know, lack of sleep for anyone can put a damper on normal activity. Hope this helps!

[Author]

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