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Old 07-03-2009, 02:58 PM   #376
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Thank you for the clarification. I actually went to my GP for an checkup and mentioned this to her as well. She was able to look up the lab results. My TSH was high, although only slightly. I think she said it was in the 6s?

I mentioned to her about the weight gain and tiredness. She doesn't think it is thyroid related. Any insight on that would be helpful. Thanks.
Okay, so if your TSH is in the "6" range, you are officially hypo. Generally, anything over a 3.4 is now considered hypo (used to be around 5.0).

As to whether it is causing your symptoms--probably. It is truly a Your Mileage May Vary situation. I, personally, don't feel bad at all when my TSH is around 6 nor do I gain weight. I generally have to get to the teens before I start to feel "off". But many other people will feel differently.

For instance, because of my past history of thyroid cancer, my doctors would like me to be hyperthyroid. But I don't tolerate it well. I really can't get my TSH below 0.9 or I start to feel bad. But other people can get closer to 0 and feel perfectly fine. I do better at a higher TSH.
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Old 07-06-2009, 07:31 AM   #377
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Quote:
Originally Posted by DisMomme View Post
Thank you for the clarification. I actually went to my GP for an checkup and mentioned this to her as well. She was able to look up the lab results. My TSH was high, although only slightly. I think she said it was in the 6s?

I mentioned to her about the weight gain and tiredness. She doesn't think it is thyroid related. Any insight on that would be helpful. Thanks.
I'm not a doctor, but I would disagree with this based on my personal experience. When my TSH is at 6 I feel miserable. Mine needs to be close to 1 to feel good, but like Christine I cannot tolerate being hyper. It's such a fine balance.
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Old 07-07-2009, 09:42 AM   #378
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It is a fine balance. I have a feeling that my ENT and GP are going by the 5.0 is normal when 3.4 is now the accepted norm. I will have my next round of blood tests done but then I will ask to see an Endo if my levels aren't lower. Thanks for the info!
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Old 07-08-2009, 10:51 AM   #379
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Hi! I just found this board and thought I'd introduce myself.

I was diagnosed with mitral valve prolapse (trust me..it's relevant!) in Feb of 2002. I've been on meds ever since for that to control heart palpitations.

In August of 2003, my father RAI treatment for his Graves Disease. He had gotten to the point that he constantly had the shakes. They were starting to think he had Parkinson's or something like that -- they didn't suspect the thyroid because he didn't have any change in weight.

So, I started doing some internet research about Graves Disease, and I saw that Graves can cause Mitral Valve Prolapse. I made an appointment with my GP, who said that it doesn't work backwards, but, if I had family members who had thyroid problems, I needed to be tested too.

The results? She said my TSH was low but still normal..and she was concerned about the presence of Lupus antibodies. A month later, I was officially hypothyroid, with a 7 pound unexplained weight gain to boot.

Unfortunately, immediately afterwards, I quit my job (bye-bye insurance!) then found out I was pregnant. The nurses I saw while I was pregnant were not concerned at all with my hypothyroidism, so I went pretty much my entire pregnancy without medication.

When I finally had insurance again in late 2006, I found a new GP and got back on medication. When it was finally worked out, I was on 75mcg.

That October, I had gotten myself into an exercise routine. I was feeling a lot better -- more energetic, happier, etc. January 2007, though...I felt like I'd shut down. I couldn't drag myself out of bed early enough to exercise (I did manage to get to work, though) I had 0 energy -- even taking every available opportunity to sit at work (I'm a teacher, and sitting is generally a no-no when there are students in the room).

Of course, my GP was not concerned. He actually seemed to act as though I was a woman and was just complaining because that's what women do.

In March 2007, I thought I felt something in my throat, as though my thyroid were growing. I didn't ask about it until April, and my GP sent me for an ultrasound. It took 2 weeks to get results..then all I got was "The ultrasound shows several nodes of different sizes. We're sending you to an endocrinologist to make sure it isn't cancer or anything." And, of course, it took a month to get in to see the endo.

When I described everything to the endo, he said, "Well, that sounds like classic Hashimoto's Thyroiditis." Even when I told him about the tiredness, he asked, "Did it feel like you were just coming off the flu?" And that was the best way to describe it -- since I wasn't "sick", I didn't think about making that connection for how I felt.

A year later, my endo got an ultrasound machine and said he'd use me to do his training. He'd never gotten the results from the previous ultrasound (even though he called and faxed requests for it). I got to see as he examined, and he described what it would look like if one were "hot" (potentially cancerous). There were definitely a lot of nodules, but none were hot. He said, "This is exactly what a textbook Hashimoto's thyroid looks like. Why didn't anyone just tell you that's what you had? Or why didn't they just say from the first ultrasound that it was an obvious case of Hashimoto's?"

My level today is a little over 2 (I think the last one said 2.34), and I guess that seems to be normal, even though I still feel tired most of the time and have periods of weight gain where I don't change anything about eating or exercise habits but I just gain weight...then it seems like I can't do anything for it to go away.

Oh, and if you're wondering, yes I did quit going to that GP.
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Old 07-08-2009, 04:53 PM   #380
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Originally Posted by rainydayplay View Post
Hi! I just found this board and thought I'd introduce myself.

I was diagnosed with mitral valve prolapse (trust me..it's relevant!) in Feb of 2002. I've been on meds ever since for that to control heart palpitations.

In August of 2003, my father RAI treatment for his Graves Disease. He had gotten to the point that he constantly had the shakes. They were starting to think he had Parkinson's or something like that -- they didn't suspect the thyroid because he didn't have any change in weight.

So, I started doing some internet research about Graves Disease, and I saw that Graves can cause Mitral Valve Prolapse. I made an appointment with my GP, who said that it doesn't work backwards, but, if I had family members who had thyroid problems, I needed to be tested too.

The results? She said my TSH was low but still normal..and she was concerned about the presence of Lupus antibodies. A month later, I was officially hypothyroid, with a 7 pound unexplained weight gain to boot.

Unfortunately, immediately afterwards, I quit my job (bye-bye insurance!) then found out I was pregnant. The nurses I saw while I was pregnant were not concerned at all with my hypothyroidism, so I went pretty much my entire pregnancy without medication.

When I finally had insurance again in late 2006, I found a new GP and got back on medication. When it was finally worked out, I was on 75mcg.

That October, I had gotten myself into an exercise routine. I was feeling a lot better -- more energetic, happier, etc. January 2007, though...I felt like I'd shut down. I couldn't drag myself out of bed early enough to exercise (I did manage to get to work, though) I had 0 energy -- even taking every available opportunity to sit at work (I'm a teacher, and sitting is generally a no-no when there are students in the room).

Of course, my GP was not concerned. He actually seemed to act as though I was a woman and was just complaining because that's what women do.

In March 2007, I thought I felt something in my throat, as though my thyroid were growing. I didn't ask about it until April, and my GP sent me for an ultrasound. It took 2 weeks to get results..then all I got was "The ultrasound shows several nodes of different sizes. We're sending you to an endocrinologist to make sure it isn't cancer or anything." And, of course, it took a month to get in to see the endo.

When I described everything to the endo, he said, "Well, that sounds like classic Hashimoto's Thyroiditis." Even when I told him about the tiredness, he asked, "Did it feel like you were just coming off the flu?" And that was the best way to describe it -- since I wasn't "sick", I didn't think about making that connection for how I felt.

A year later, my endo got an ultrasound machine and said he'd use me to do his training. He'd never gotten the results from the previous ultrasound (even though he called and faxed requests for it). I got to see as he examined, and he described what it would look like if one were "hot" (potentially cancerous). There were definitely a lot of nodules, but none were hot. He said, "This is exactly what a textbook Hashimoto's thyroid looks like. Why didn't anyone just tell you that's what you had? Or why didn't they just say from the first ultrasound that it was an obvious case of Hashimoto's?"

My level today is a little over 2 (I think the last one said 2.34), and I guess that seems to be normal, even though I still feel tired most of the time and have periods of weight gain where I don't change anything about eating or exercise habits but I just gain weight...then it seems like I can't do anything for it to go away.

Oh, and if you're wondering, yes I did quit going to that GP.
Thanksk for sharing. In that "misery loves company" way it's great to know other's have issues with their Hashimoto's. Sometimes I feel pretty alone with it. I just switched meds, which ended up being a bad thing for me: My TSH was .96 in April, and by mid-June it was 17.9. Yep. No wonder I was crashing by 3:00 pm, losing hair by the fistfuls, sore & achy joints, and gaining weight with no dietary changes. I was also emotional for no reason at all. Yuck! I just had my TSH drawn again yesterday after returning to my previous drug and dosage. It just makes me frustrated that I have times that are just wasted...it just drifts by me when I feel so badly. Kind of like wading through mud every day just to do the things that have to be done.
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Old 07-13-2009, 10:15 PM   #381
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just found this thread after creating a thread with my question, but I'd like to post it here anyway:

Quote:
Ever had an allergic reaction to Levothyroxine? I've been having rash/hives randomly show up, mostly on my arms. This has been going on for MONTHS, maybe as long as a year. I usually slather some Benadryl gel on the offending area and go along with my life. It was really bothering me today, so I started checking around and discovered it could well be my thyroid medication! It could just be stress, too, but how do I figure out which one???

I'll call my doctor tomorrow, but I'm just wondering if anyone else has had this problem, and what medication you were switched to, and what the cost difference was. I just had a 3 month supply filled at the pharmacy! Oh, well. I'm ready for this to STOP!!!
For a little background, I was diagnosed a little under 2 years ago as "sub-clinical hypothyroid", with a TSH of 3.6, a year later it was 3.4, 6 weeks after that it was 4.6 after my medication was adjusted. At last check it was 3.3. I'd like to get it lower (because of all the wretched symptoms, namely always being cold and the weight gain). I am taking levothyroxine 25mcg.
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Old 07-25-2009, 04:29 PM   #382
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I don't think I'm going to like this journey of getting the right dosage of synthroid. I am on 50mcg of Levothyroxine. This was the first dose prescribed. The ENT told me to wait 6 weeks and have my blood tested again. Do I have to wait 6 weeks for it to metabolize in my system? I had a blood draw after my surgery at exactly 6 weeks and all was normal, 3 months later my TSH was 6.4 and I was basically useless. The last week of school we had field trips planned all week and I was exhausted trying to keep up.

I know that the 50 mcg is not working because I don't really feel any different (been on it for a little over 4 weeks). My memory is mush and I'm gaining weight while keeping a food diary and trying to lose. My muscles ache, the only upside to that is I see a chiropractor every other week and get a massage and adjustment which helps.

I'm also worried about the left remaining side of my thyroid. Last Dec. when I had the surgery the nodule on the left side was too small to even biopsy. A couple weeks ago when I visited my PCP, she said she could now feel the nodule. Will this mean more surgery? I am scheduled for a follow-up ultrasound in Nov. Should I call to move it up?

Any help or insight about this roller-coaster ride would be appreciated.
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Old 07-27-2009, 03:23 PM   #383
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I just went for my one year follow-up after having my thyroid completely removed. Dr. said that there is some thyroid tissue that's showing up on the ultrasound so she wants to keep an eye on it. Has anyone had this happen? I'm not sure if it's something that they missed the first time or if it actually grew back (if that's even possible). I have to go back for a repeat ultrasound in 4 months. I can't stand the fact that I'm going to have this hanging over me for that long.
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Old 07-31-2009, 04:58 PM   #384
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Originally Posted by KAMLEM View Post
I just went for my one year follow-up after having my thyroid completely removed. Dr. said that there is some thyroid tissue that's showing up on the ultrasound so she wants to keep an eye on it. Has anyone had this happen? I'm not sure if it's something that they missed the first time or if it actually grew back (if that's even possible). I have to go back for a repeat ultrasound in 4 months. I can't stand the fact that I'm going to have this hanging over me for that long.
Did you have thyroid cancer?

The thyroid does not grow back. The only thing that can grow back is a cancer, unfortunately, so if there has been regrowth, it would not be normal thyroid tissue.

Having said that bit of cheery news, when a thyroidectomy is done a surgeon cannot possibly get every bit of thyroid tissue. They actually leave a tiny bit behind to make follow up RAI treatment more effective.

Again, I don't know if you had/have thyroid cancer but it would not be normal to "watch" this tissue via using only ultrasound. If your gland was non-cancerous then this may be standard procedure.
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Old 07-31-2009, 06:20 PM   #385
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I did have cancer. I didn't have the RAI treatment because when they did the body scan they said there was no tissue left to treat. I thought this was all done and over with, I should have known it wouldn't be so easy.
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Old 08-01-2009, 02:26 PM   #386
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I did have cancer. I didn't have the RAI treatment because when they did the body scan they said there was no tissue left to treat. I thought this was all done and over with, I should have known it wouldn't be so easy.
Hmmmm....that's VERY interesting. I really do not like to criticize the medical care others receive but, having been a part of the thyca support list for 10 years I have *never* heard of any patient being told there was no thyroid tissue left to treat. Personally, I was told that a surgeon can NEVER get all the thyroid tissue out, hence the need for RAI treatment after surgery unless the cancer is in the millimeter size.

If you don't have follow up RAI you cannot be successfully followed up with thyroglobulin tests or anything. The ultrasound isn't really able to tell what is in your neck.

I will be blunt with you--I think you should seek a second opinion. You are a thyroid cancer patient. You had known thyroid cancer in your neck. ANY kind of growth at this point should never be watched and I also believe you should have RAI treatment.

Have you participated in the thyca group online? It wasn't until I started going to support groups that I realized that my initial treatment was not optimal which caused me problems a few years after surgery.
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Old 08-03-2009, 04:02 PM   #387
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So christine are you there (sorry about your crummy week end, hope today was better), anyone else too that has thyroid cancer, did you have any problems post surgery with controlling your body temperature? My synthroid is 200 and I am either sweating hot or freezing cold. Mostly I wake up hot, not a night sweat like menopause, just hot, and then it alternates. just had more blood tests and am going to the endo for a check up on thurs.


Christine, just wondering about your other comment, how the ultrasound cannot see what is in your neck. I am suppose to have one in the fall. The endo says its routine procedure after the ca surgery etc. So if its not such a definitive test, then why are they doing it etc? They even told me the blood tests with a higher raised level would be a better indicator before the lymph nodes started popping out on my neck again etc.
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Old 08-03-2009, 04:45 PM   #388
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So christine are you there (sorry about your crummy week end, hope today was better), anyone else too that has thyroid cancer, did you have any problems post surgery with controlling your body temperature? My synthroid is 200 and I am either sweating hot or freezing cold. Mostly I wake up hot, not a night sweat like menopause, just hot, and then it alternates. just had more blood tests and am going to the endo for a check up on thurs.


Christine, just wondering about your other comment, how the ultrasound cannot see what is in your neck. I am suppose to have one in the fall. The endo says its routine procedure after the ca surgery etc. So if its not such a definitive test, then why are they doing it etc? They even told me the blood tests with a higher raised level would be a better indicator before the lymph nodes started popping out on my neck again etc.

I had a lot of issues with regulation following my surgery and starting Synthroid. When you have your thyroid gland unceremoniously ripped out of your neck you tend to get on a hormonal roller coaster. It has been 14 years for me (August 1st was my *anniversary*) so it is hard to remember. I just remember feeling really odd for about 6 months. Sometimes I felt like I was buzzing or jittery or jerky, other times very cold. I remember feeling hot a lot after RAI (for weeks/months). The very first time my Synthroid dose was too high I would get terrible face/ear flushing episodses at work.

For the most part that has evened out, although, now I am entering perimenopause and I get a lot of weird stuff going on.

I also don't mean to confuse anyone about the ultrasounds. It is a very useful tool in following up for thyroid cancer. They weren't even doing them as follow up when I was first diagnosed and I only just had my first one 6 months ago!!! You must remember that not ONE test for thyroid cancer is perfect. The thyroglobulin blood test (tumor marker) can give false negatives in some people, the RAI diagnostic scan and give false "clean" scans in some people, and certainly an ultrasound can "see" everything in your neck but it cannot tell if what it sees is cancer or something normal the surgeon left behind. Having *all* the tests together gives a patient the best diagnostic procedure.

My concern with Kamlem's situation is that she did not have "clean up" RAI after surgery and from her information in her post it sounded like the doctor might only be following her with ultrasound. In my VERY non-medical opinion (and I want to be clear about that), it isn't the norm for what I hear of most thyroid cancer patients. I've always been told that if you do not have RAI following surgery, it is very hard to follow up with scans, bloodwork, and other diagnostic tests because you never get a totally cleared out neck. The ultrasound of course is valuable as you continue to compare the different ones with the baseline done right after surgery. I sure hope I didn't scare her off!! I hate being negative about this stuff sometimes but I really feel, at least when it comes to thyroid cancer, that it is important to give out my honest thoughts on what people are going through. This is one situation where too much of trying to be polite might not help someone to ask their doctor questions.
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Old 08-03-2009, 05:10 PM   #389
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I have been lurking on this thread for a very long time. Think I have even posted a couple of times. But, now I need some in put from all your experiences.
My history. I was dx'd at the age of 21 with hypo thyroid (25 yrs. ago). Was placed on Synthoid and just moved forward. Well I have to be honest, I wasn't very good with taking my meds nor with my blood work. Never though it was all that important. No one ever explained just how important my thyroid was. I know now that my thyroid was the reason that I had 4 failed pregnancies. Several years ago I was told that my THS levels were way to high and was given the radio active pill to slow it down. (don't remember the levels) Things seem to go well for awhile. Almost 5 years ago my THS levels were to high again. How it was explained to me was my thyroid should have been pumping out hormone a rate of 30-35 and mine was pumping at almost 80. This was causing my entire body and brain to misfire. I couldn't remember how to get home. I couldn't carry on a normal conversation. I would forget the simplest things like how to pick up the phone when it rang. Or how to tie my shoes. I even got lost once on my way home from work. Again, I was given the radi pill and told this with synthroid all would be good.
Oh and at the same time I was told I had early stages of MS.

Well fast forward to the last few months. I have been feeling sluggish, always tired. I'm always in a fog and can sleep at the drop of a hat. And my migraines were getting worse and sticking around almost 24/7. I have had migraines since I was 4, but, these were different. It felt like my brain was pushing on my scull and was going to push out my ears. ( this is exactly how I explained it to my PCP). The pressure in my head is intense. Went to my PCP last Wednesday was given RX for prednisone 40mgs 1x day for 5 days. Ordered an MRI of the brain to see if there were any changes in my lessions. And ordered fasting blood work for today. The prednisone seemed to diminish the migraines but didn't take them away.
Well I just got off the phone with my PCP and he said my lessions haven't changes but, my THS levels should be under 4 and the were over 50..He said this is what is causing my migraines and my thought prosses turning to mush again.
I asked out right if this could be or could turn cancer. His answer was no.

Here is where you all come in to play. Am I right in thinking this shouldn't keep happening? I know I should be more educated on all of this, but, I'm not and have just kind of gone with the flow and never really taken it all that seriously. I have to be honest, I'm starting to scare myself with all the what nows.
I forgot to mention, I have seen an Endo. But, my PCP seems to take things alot more seriously then the Endo. I trust my PCP with my life. The Endo is more interested in what my ins. company will or will not pay for. And he was always well let's just wait and see.

Any help at this point would be greatly appreciated.
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Old 08-03-2009, 05:50 PM   #390
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IMALOVINDISNEY--

I'll try my best to explain what I think happened to you.

First off, I want to explain what TSH is. It is Thyroid Stimulating Hormone. It is a hormone made by the pituitary gland in your brain. It is not an actual thyroid hormone but its measurement is a reflection of how well your thyroid is working. Think of your thyroid gland as a horse and think of the pituitary gland as the rider/driver/jockey of the horse. If the horse (thyroid) slows down, the jockey chides the horse/whips the horse (i.e., produces more TSH) to get the horse (thyroid moving). If the horse (thyroid) is galloping, the jockey will slow the horse down by pulling back on the reins (stopping TSH altogether).

So, the summary of that comparison is:

If your thyroid is pushiing out too much hormone, your pituitary gland stops stimulating it in an attempt to slow it down. This equals a very LOW TSH. Hyperthyroidism can cause some people to have a TSH measurement of 0.

When your thyroid gland is sluggish, the pituitary gland pumps out a lot of TSH to try to stimulate the gland so if you are HYPOthyroid (low) then your TSH will be high.

LOW TSH = HIGH THYROID or HYPERTHYROIDSISM
HIGH TSH = LOW THYROID or HYPOTHYROIDISM

It sounds to me that in your younger days, you were hyperthyroid. That is the ONLY reason they would have given you the RAI pill--to try to destroy your gland so you would stop putting out so much hormone.

It looks as though after your second RAI, it really work and now your thyroid is dead; hence, the TSH reading of 50. You are fairly severely hypothyroid. No wonder you feel awful.

You need to definitely take your Synthroid and you will feel better once you get your TSH down to around 2.0. Which is the ideal TSH for pregnancies I am told.
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