The THYROID Thread

[mrsklamc]

Hi there everyone my name is Krista. I have been wondering if I had thryoid issues for some time. Instead I have been diagnosed with Anxiety. However there is something in my gut that tells me it's much more than that. Since you guys actually live with this maybe you can give some insight into my symtoms:

chronic blepharitis - started 6 years ago when I was pregnant
heart palps and feelings of skipped beats - by far the worst symptom
tired, tired, tired.....but don't sleep well at night
weak arms and legs
chest discomfort & aches
shortness of breath
chronic diarrhea
nervous
night sweats
dizziness
I've lost 40lbs in the last 3 years without trying, bugt seem to have tapered off

I know I do have anxiety, I'm not denying that. It runs in my family, but I just don't think the anxiety is causing all of these symptoms. I would say that all the symptoms have gotten worse since I had my gallbladder out 3 years ago. Maybe it's related to that. My current Dr. brushes me off and attributes everything to my anxiety. I have an "interview" with a new Dr. in April. I'm hoping she will take me on as patient and will take my concerns seriously

I checked my last blood test from April/10 and my TSH number says .88 so I guess it's normal.

I just wish I felt normal

Are you taking anything for the anxiety?

 

[Sugar Jones]

I see a homeopathic Dr. and take a remedy everyday for it. It helps with the daily anxiety issues I have and stress, but it doesn't help with the majority of the symptoms. I take Ativan if it is really bad.

I also find that most of my symptoms are related to my hormone cycle. It's worse around ovulation time and the week before my cycle is due.

I know I should probably try a daily anxiety medicine like Effexor or Celexa and I will discuss it with the new Dr.

 

[Christine]

Well, your TSH is pretty good so I'm not thinking it's thyroid. Plus, based on your symptoms they fall either in the hypo or hyper range, which really points to something else.

However, the TSH is the *THE* defining test. Your doctor should also run a Free T3 and Free T4 to make sure those are normal also. They can also run some thyroid antibody test to rule out Hashimoto's thyroiditis which, in some cases, can cause swings in thyroid function. If those are all normal, the thyroid is not your problem.

You need to have your iron levels tested. By that, I do not mean just a CBC to tell if you are anemic or not. You need to a have your ferritin tested. Ferritin is the measurement of your iron stores that your body pulls from. It should be about 70. Mine was at 3. Yes 3! And I only, for a short time, became mildly anemic. During that time I had horrible anxiety and many of your other symptoms.

I also have blepharitis and dry eye but have determined it is not related to anything--just something I have.

Please insist that your new doctor add in a ferritin test when she does your Complete Blood Count bloodwork.

If everything comes back normal there, I would head to a GYN and see if you can have some hormonal tests done.

I'm not saying you don't have anxiety, but I let too many doctors push me into that diagnosis and, you know what? They were wrong.

 

[mom23boys]

Hi All,
If I can join your thread I would really appreciate it. I just came back from an endocrinoligist (sp) appointment. In the fall I felt my throat was enlarged and I was having trouble swallowing. So I went to the Dr and did a blood test, my tests were good even my thyroid (don't have the results handy I gave them to the dr this morning). So I went for an ultrasound this past Friday and I have 6 nodules on my thyroid. One is huge 5 cm on the left, the right side has 4 smaller nodules (2 cm and 4 at 1cm) and the isthmus has a 1cm nodule. So to say that I am a little freaked out is an understatement.

I am getting a FNA biopsy in 2 weeks and then to see a surgeon. I will keep you guys updated it that is okay.

Thanks for reading.

 

[Sugar Jones]

Thanks Christine.

The more I've been reading about Thyroid the more I am thinking it's not my answer either.

My Ferritin level was 7 on that same blood test. I've been taking 1 iron pill a day (when I remember) since July. I'm supposed to take 2 a day during my cycle. You know I haven't been very diligent about taking them lately. Maybe that's the cause for my "relapse" I say relapse because I have been doing sooo well since September.

 

[luvmarypoppins]

Hi All,
If I can join your thread I would really appreciate it. I just came back from an endocrinoligist (sp) appointment. In the fall I felt my throat was enlarged and I was having trouble swallowing. So I went to the Dr and did a blood test, my tests were good even my thyroid (don't have the results handy I gave them to the dr this morning). So I went for an ultrasound this past Friday and I have 6 nodules on my thyroid. One is huge 5 cm on the left, the right side has 4 smaller nodules (2 cm and 4 at 1cm) and the isthmus has a 1cm nodule. So to say that I am a little freaked out is an understatement.

I am getting a FNA biopsy in 2 weeks and then to see a surgeon. I will keep you guys updated it that is okay.

Thanks for reading.

welcome, mom23boys - from another mom of 3 boys too! I am sure waiting is the hardest. Since you live in philly, just wondering if you are going to Thomas Jefferson? Are you still having trouble swallowing? The FNA is really not bad at all. I make sure they did novacaine before the actual biopsy. If they are doing multiple spots it might seem a little weird etc. Keep us informed. Wishing you all the best.

 

[Christine]

Thanks Christine.

The more I've been reading about Thyroid the more I am thinking it's not my answer either.

My Ferritin level was 7 on that same blood test. I've been taking 1 iron pill a day (when I remember) since July. I'm supposed to take 2 a day during my cycle. You know I haven't been very diligent about taking them lately. Maybe that's the cause for my "relapse" I say relapse because I have been doing sooo well since September.

Well I think you might have your answer for most of your symptoms. A 7 is very low. You basically have no stores so your body only has what is circulating in the bloodstream.

Do try to take the iron. I start to feel better when my ferritin hits about 25. I'm not sure I've ever gotten up to the desired 70 but anywhere UP is better.

 

[luvmarypoppins]

So did anyone see the National Rare Disease Day thread on the cb?

Oh yes, those of us that have thy ca on this thread, you are officially Rare!!

Thats always a joke that I have told my dh, especially when they said I had the rare variant, I always say "I wanted medium, and I got rare!", also our own personal joke since I like steak etc. medium.

There is you ca. humor for the day.

Oh and I have to call back my endo. I think they have finally got my reclast, so I have to get the infusion set up.

Christine, have you had a routine dexa scan as part of your care? Just wondering since maybe my endo did it because of my age and she said my synthroid is a high constant dose etc.

 

[mom23boys]

welcome, mom23boys - from another mom of 3 boys too! I am sure waiting is the hardest. Since you live in philly, just wondering if you are going to Thomas Jefferson? Are you still having trouble swallowing? The FNA is really not bad at all. I make sure they did novacaine before the actual biopsy. If they are doing multiple spots it might seem a little weird etc. Keep us informed. Wishing you all the best.

Hi,
I am going to a suburban hospital. Yes I am still have trouble swallowing, it is not all the time, mostly with dry foods like bread and carbs. I just can't wait for the whole thing to be over the waiting is exhuasting.

 

[Christine]

Christine, have you had a routine dexa scan as part of your care? Just wondering since maybe my endo did it because of my age and she said my synthroid is a high constant dose etc.

Nope! My GYN told me to do it at age 50 and my endo didn't feel it needed to be done. I'm not overly suppressed so I don't think that is increasing my risk.

 

[mrsklamc]

Oh yes, those of us that have thy ca on this thread, you are officially Rare!!

Thats always a joke that I have told my dh, especially when they said I had the rare variant, I always say "I wanted medium, and I got rare!", also our own personal joke since I like steak etc. medium.

There is you ca. humor for the day.

Funny because I like things WELL.

 

[mrsklamc]

Hi All,
If I can join your thread I would really appreciate it. I just came back from an endocrinoligist (sp) appointment. In the fall I felt my throat was enlarged and I was having trouble swallowing. So I went to the Dr and did a blood test, my tests were good even my thyroid (don't have the results handy I gave them to the dr this morning). So I went for an ultrasound this past Friday and I have 6 nodules on my thyroid. One is huge 5 cm on the left, the right side has 4 smaller nodules (2 cm and 4 at 1cm) and the isthmus has a 1cm nodule. So to say that I am a little freaked out is an understatement.

I am getting a FNA biopsy in 2 weeks and then to see a surgeon. I will keep you guys updated it that is okay.

Thanks for reading.

Wow two weeks is a long wait! How frustrated you must be.

 

[luvmarypoppins]

Funny because I like things WELL.

 

[itsdisneytime]

Hi all.

My name is Shannon - 36yr old female - with a 9yr old dd. I was so happy when I stumbled upon Luvmarypoppins in the disabilities forum. I was asking about issues I am having since my thyroid removal in July 09. I am married although I do not have a bunch of sympathy -- somehow my family is detatched and not very emotional (all of us) .. not just me and my husband, I come from a long line of (love your family but dont doat type people).

Ill try to keep this short to give you basics on me -- I am really going to need help from kind hearted understanding people with similar issues.

I went for a health screen in june of 09 after avoiding docs since my dd was born in 02. I had no health insurance then so I went to a free clinic (my husband and I own a small business and the recession hit us hard) so needless to say I couldnt afford insurance, .... the doc at the free clinic said my thyroid felt enlarged, set me up for an iodized can? which showed how large it was (i was never told but it was huge they said per the rad tech) .. I then had a biopsy which came back inconclusive - doc said if she were me she went consult with ent and go from there.
ent free clinic docs offered to operate saying it was too large to not cut 1/2 and test while i was asleep in o.r -- which they did on july 21, 09. They determined it was cancerous and cut out the whole thing ...
** my doctor removed 2 lymph nodes so she thought to test and see if it had gone there and while the news was good it had not gone to the lymph nodes == it was complicated by the fact that they told her there was 2 para thyroid glands in there and they could not be put back in. **
during my surgery my doctor also lacerated a vein and only after they sewed me back up did they realize i was bleeding internally.

I spent 11 days in hosp -- ive never gotten a normal blood calcium reading DESPITE the huge quantity of calcitriol and vitamin d and oscal i take ...

lets dont even talk about my new issues , IBS and constant nausea from the medications and ammounts I am taking --

I am being tested currently to see if the cancer has spread as my levels came back high -- this was a non stimulated test, thyrogen will be next.

does anyone relate to these words:? my laptop is dying but i also realized i forgot to mention my 2 times radiation ... once was a pill that i took orally and had to isolate for 10 days ... one was 6 weeks of beam treatment that left me with no tastebuds .. or actually, metal tastes

 

[Christine]

Hi there! Sorry to hear that you have struggled so much with this.

First, it sounds as if your remaining parathyroid glands never took over for the missing two. I had one removed during surgery so I've been living with three and have never had a problem. My surgeon told me that even if you only have one parathyroid left, it will often just work as well as the four did. I wonder if they damaged the other two during surgery and just didn't know.

Have they given you any hope that they might start working?

It sounds as if you had a Thyroglobulin come back elevated which indicates (since you are still so soon after surgery) that you have persistant thyroid tissue still in your neck somewhere.

Have you had ultrasounds done? Are you still without insurance?

I don't know much about external beam radiation as I don't know many thyroid cancer people who've had that.

Hi all.

My name is Shannon - 36yr old female - with a 9yr old dd. I was so happy when I stumbled upon Luvmarypoppins in the disabilities forum. I was asking about issues I am having since my thyroid removal in July 09. I am married although I do not have a bunch of sympathy -- somehow my family is detatched and not very emotional (all of us) .. not just me and my husband, I come from a long line of (love your family but dont doat type people).

Ill try to keep this short to give you basics on me -- I am really going to need help from kind hearted understanding people with similar issues.

I went for a health screen in june of 09 after avoiding docs since my dd was born in 02. I had no health insurance then so I went to a free clinic (my husband and I own a small business and the recession hit us hard) so needless to say I couldnt afford insurance, .... the doc at the free clinic said my thyroid felt enlarged, set me up for an iodized can? which showed how large it was (i was never told but it was huge they said per the rad tech) .. I then had a biopsy which came back inconclusive - doc said if she were me she went consult with ent and go from there.
ent free clinic docs offered to operate saying it was too large to not cut 1/2 and test while i was asleep in o.r -- which they did on july 21, 09. They determined it was cancerous and cut out the whole thing ...
** my doctor removed 2 lymph nodes so she thought to test and see if it had gone there and while the news was good it had not gone to the lymph nodes == it was complicated by the fact that they told her there was 2 para thyroid glands in there and they could not be put back in. **
during my surgery my doctor also lacerated a vein and only after they sewed me back up did they realize i was bleeding internally.

I spent 11 days in hosp -- ive never gotten a normal blood calcium reading DESPITE the huge quantity of calcitriol and vitamin d and oscal i take ...

lets dont even talk about my new issues , IBS and constant nausea from the medications and ammounts I am taking --

I am being tested currently to see if the cancer has spread as my levels came back high -- this was a non stimulated test, thyrogen will be next.

does anyone relate to these words:? my laptop is dying but i also realized i forgot to mention my 2 times radiation ... once was a pill that i took orally and had to isolate for 10 days ... one was 6 weeks of beam treatment that left me with no tastebuds .. or actually, metal tastes

 

[MedicBill]

Hi guys!
Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.

My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?

Thanks!
Bill

 

[mrsklamc]

Hi guys!
Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.

My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?

Thanks!
Bill

Good gracious! YES that's a long time before an endo gets involved!!! I'd guess your muscle cramps are because of low calcium from the lack of parathyroids. If your endo is a good one, they will know how miserable an off dose feels.

 

[MedicBill]

Good gracious! YES that's a long time before an endo gets involved!!! I'd guess your muscle cramps are because of low calcium from the lack of parathyroids. If your endo is a good one, they will know how miserable an off dose feels.

Cool! Thanks for the quick response!

 

[Christine]

Hi guys!
Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.

My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?

Thanks!
Bill

Hi Bill and welcome.

Yes, it is a long time to go without seeing an endo but I know that endos can be terribly hard to get into, especially if you are waiting to see a top notch one. Tomorrow can't come soon enough, huh?

100 mcg of thyroid hormone is probably way too low for a man. Most women thyroid cancer patients are started on a minimum of 125 mcg. After any adjustments it takes 6 weeks to see *some* improvement. Are you saying that even after the adjustment to 200 mcg, you are still having a TSH of 79?

I'm not shocked you have gained so much weight. I never gained more than 10 lbs but I was never hypo for as long as you have been. The good thing is that once my meds were regulated, the hypo weight came off pretty quickly. It wasn't like it was "real" fat but almost like a swelling kind of weight if that makes sense.

I, for one, used to get horrible muscle cramping and charlie horses when hypo. I would wake up in the middle of the night with my calves spasming so bad. I never had a calcium issue so the hyponess definitely causes it.

I hope you get relief soon.

 

[mrsklamc]

Yes, hypo can definitely cause cramps too. I just jumped on calcium because of the para's.

Question for you guys- the last couple months I seem to be perpetually tired and crabby. My TSH was at .098 but she did alter my dosage slightly because I felt like I might be hyper. But of course, it takes several weeks for the dosage to adjust. In the meantime, I hate feeling like this. Do you think I should wait for the dose to adjust, or maybe ask my GP about anti depressants?