The THYROID Thread

[ElizK]

just found this thread after creating a thread with my question, but I'd like to post it here anyway:

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.

 

[DisMomme]

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.

 

[KAMLEM]

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.

 

[Christine]

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.

 

[KAMLEM]

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.

 

[Christine]

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.

 

[luvmarypoppins]

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.

 

[Christine]

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.

 

[IMALOVNDISNEY]

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.

 

[Christine]

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.

 

[Terri5176]

Hello -


I've been reading this thread - with alot of interest. I believe I've got some sort of thyroid issue, and am waiting for my doctor's appointment to talk about it.

I'm 50 (ouch) and have been menopausal for quite a while. I had my symptoms under control with an OTC med - Estroven. Then - it seemed - overnight my symptoms went crazy. I have hot flashes continually. Not night sweats - but waking up HOT. When I'm not dying of the heat - I am ice cold.

My weight has gone crazy - that seemed to happen overnight as well. I added 30 pounds with no effort. I'm trying to get rid of it - working out 4 - 5 days a week, 2 - 2/2 hours each time. No change, in fact I continue to gain. I'm training for half marathons - completed one in June, have a few more scheduled this year, then Goofy in January. I do okay, but the hot flashes are really tough during exercise.

My eyesight is horrible, my hair is thinning, and I ACHE. I can't remember anything anymore.

My mother had benign tumors on her thyroid - it was removed (this was in 1963?) and was on meds from then on. (side note - Synthroid never worked right for her - she had a cow based replacement?)

It's hard - I don't know how much of this is due to menopause, and how much is due to something else. I'm tired of people looking at me like I eat too much.....



Terri

 

[Christine]

Teri,

Have you had a thyroid panel (bloodwork) done. Many/most of your symptoms for sure can be attributed to perimenopausal stuff that just gets worse and worse until you actual go through meno. My mother had a ROUGH time and many women I know have exactly the same issues as you. An aquaintance I have has been struggling for 2 years now and finally had to go on prescription HRT because her quality of life was so impacted.

The weight gain (especially through the abdomen) seems to be normal. My mom really packed on the pounds and has a very hard time shedding them. I have read that a low-carb diet works particularly well for the menopausal weight gain.

I would not rule out thyroid and it's easy enough to check if it is contributing to your issues.

Your mom was probably taking Armour Thyroid which is made from dessicated pig thyroids. I do think some older medicines were made from cows.

 

[Terri5176]

Hi Christine -


I had a panel done probably 5 - 6 years ago, and was told I was "borderline" hypo.

I struggle with the idea of HRT too - but I guess that's just me. I couldn't take the pill because of the effect it had on my mood. (the last time I tried - to help with severe pain - I ended up screaming at my boss....). But I'v reached the point that I can't take any of this too much longer....

The reason I'm thinking thyroid is a "feeling" that there's something in my throat? Not that it's difficult to swallow, just that there's something "there".



Does that make any sense?



Thanks -


Terri

 

[Christine]

Hi Christine -


I had a panel done probably 5 - 6 years ago, and was told I was "borderline" hypo.

I struggle with the idea of HRT too - but I guess that's just me. I couldn't take the pill because of the effect it had on my mood. (the last time I tried - to help with severe pain - I ended up screaming at my boss....). But I'v reached the point that I can't take any of this too much longer....

The reason I'm thinking thyroid is a "feeling" that there's something in my throat? Not that it's difficult to swallow, just that there's something "there".



Does that make any sense?



Thanks -


Terri

Yes, it makes perfect sense. And given your familial history with thyroid nodules, you could very well be having problems. Borderline hypo 5-6 years ago is now considered hypo as they lowered the threshhold for what is considered hypo. I believe any TSH reading over 3.5 is now hypo. That number used to be 5.0. Some labs have changed their reporting and some haven't. I think it is worth it for you to go get testing again and to probably have your neck palpated by someone who knows. You could also have some nodules and they are pressing on your throat. That is a very common symptom of that--feeling that pressure.

 

[Terri5176]

I have an appointment with my OB/Gyn on the 18th (ever try to get a quick appointment?) but I'm thinking of going to the regular group to get tested. It's too bad that these days it's harder to get a doctor that *knows* you - it's always someone who is in a hurry, and doesn't really listen.



Terri

 

[chocovrdmicears]

Hi there! I have some questions that I was hoping someone might be able to help me.. I am just so upset right now...I just don't know what to do.

6 months ago I was diagnosed with hypothyroidism. My inital bloodwork came back with a level of 32!
I was put on levothyroxine. (can't remember the dosage).
6 weeks later my level tested at 31.
They increased the dosage.
6-7 weeks later my level tested at 11. Still not great..but obviously better.
They increased my dosage to 112mcg which I have been taking for the past 2 months. I just had my blood drawn Friday and I got the results back today.
My levels are now at 43! I just am so blown away that it is now more than where it started! How is this possible? I am trying to get an appointment with my endroc. but she will be leaving for vacation next week so i am not sure I can see her until she gets back. I just don't understand! Does anyone have any thoughts or ideas how my level can increase so much after being on medication for all these months? What should I do now? I am so upset...I just can't believe it.
Any thoughts or suggestions would be greatly appreciated!

 

[angwill]

I don't know what is going on with you personally. I can only speak of why my TSH level went up drastically and appearantly for no reason in the past. I was taking multi vitamins with iron. Apparently iron is not a good mix with thyroid medicines. There are also certain foods that could effect the level. Now my aunt who has hypothyroidism takes her multivitamin with her sythroid every day and never had it happen to her so I suppose it varies person to person. I bought centrum silver (only medicine for the elderly has no iron in it) and have not had that problem since and my level went back in line when I stopped taking my multi vitamin. HTH

 

[Christine]

A couple of thoughts to choco:

1. Make sure you take your thyroid medication everyday on an empty stomach. Do not change how you take it otherwise you will get variances.

2. As the other poster mentioned, do not take iron for several hours before or after your thyroid medication. Iron binds with the thyroid hormones and it cannot be utilized by the body.

3. Other things can interfere with thyroid hormones, calcium being one of them. Just make sure the meds are taken AWAY from anything else.

4. Make sure that despite whatever dosage changes your doctor is prescribing, that you are sticking with the SAME brand of thyroid medication. It is proven that generic thyroid hormone has wide variances between the different companies that make them. You must be sure that you stick with the same manufacturer or you will have a very hard time getting regulated. This is not to say that you cannot take a generic one; however, make sure that the generic is made by the same company. For instance, you don't want to get 112 mg of Levothyroxine made by Sandoz one month and then your next month's supply comes from Forest Pharmaceuticals. It won't be the same. Does that make sense?

5. Thyroid medication is VERY sensitive to heat and time. If you got an 'old' batch or your medication was exposed to heat (in the car, mailbox, bathroom, etc) it may be less effective for that vial. I would look at the medication for the month prior to your TSH shooting back up. Was it different in some way?

6. Lastly, you may be doing everything perfectly with the meds; however, if you have something like Hashimoto's thyroiditis, your gland is going to function erratically. For the month that your TSH went down to 11, maybe your gland worked a little bit and put out some thyroid hormone. On the month it shot back up, maybe your thyroid gland decided not to work. It is very hard dealing with a dying thyroid gland. Lots of ups and downs.

 

[chocovrdmicears]

Thank you so much for the info! Christine, you taught me many things! I had no idea that the medication itself could be so *sensitive*. I don't take any other medications/vitamins and I always take it the same time, every morning, on an empty stomach. I guess I just assumed that I would take the medication, and I would get better! silly me! lol! I had no idea that this was going to be such a long and unpredictable road. The good news is that my Dr. called and will see me tomorrow morning. Thanks to your information I now have some specific questions to ask. Wish me luck! And thank you again for taking the time to help me.

 

[tpmpro687]

I think this is an awsome site. We are checking in Old Key West on the 22nd of Aug. We are going this year to celebrate being cancer free. I have had nodules for over a year and a half. I had biopsys done christmas eve and Jan 3. they called to tell me that they were cancer. The doctor at the time who was home on maturnity leave called said not a big emergancy just don't sit on it that it was non aggressive. If i had any question to call the office. After I pulled my self together the next day I called with a recomendation another doctor. I went and saw Dr. Lee and Jan 2th I had my surgury. He came out and told my husband that it was a good thing I didn't wait that it was moderate aggressive. They had to remove one of my paraglands and some of the lympth gland as well because it started to spread. I was in the hospital for 6 nights and 7 days. They couldn't get my calcium level regulated. From the surgury I have a paraylized right vocal cord. They gave me 5% of getting my true voice back. Right now I sound like Minnie mouse (thats what my husband and lot of people say) I had to one round of radiation in March. March 19th I was told I was cancer free. My husband asked me before surgury what I wanted when everything turned out to be okay and I told him I wanted to go to Disney with him and my 2 sons and we are a week and 3 days away.