The THYROID Thread

[Poohbear5]

Hi all!

I was just diagnosed with hypo this week and started on low dose and they will reevaluate the dose of sythroid every 6 weeks to get the right dosage.

How long will it take my hair to regrow??
Out of all the symptoms, that's really bugging me the most!

Any one else get a foggy eye as a result of being hypo? Doc said she was pretty sure that was from thyroid but not 100% so we'll have to wait and see.

 

[kathleena]

Hi all!

I was just diagnosed with hypo this week and started on low dose and they will reevaluate the dose of sythroid every 6 weeks to get the right dosage.

How long will it take my hair to regrow??
Out of all the symptoms, that's really bugging me the most!

Any one else get a foggy eye as a result of being hypo? Doc said she was pretty sure that was from thyroid but not 100% so we'll have to wait and see.

Hi hon! I can't answer about the hair, but I hope you are feeling better soon!

About the eye - I had eye changes before I was diagnosed. My left eye is the most affected and I guess I would call it foggy. BUT - it is a result of TSI antibodies which cause Graves disease (hyper). I was hypo first and then went hyper a couple of years later. I was on synthroid for 2 years, but the numbers wouldn't stabilize because of the TSI antibodies. I'm now treated for Graves (with anti-thyroid drugs, not RAI) and am in remission. Now on .75/1.0 levothyroxine and am stable.

So my questions beyond the foggyness - do you notice any change in your eye - like is is bigger/wider than the other one (more of the color showing?), do you have any dryness (symptom would be your eye watering, which is opposite what you would think)? If you have either of these, it could be TSI.

Anyway - ask your doctor to check the hypo antibodies if she hasn't already and talk with her about TSI antibodies. My PCP didn't know about the TSI antibodies so she didn't test them. It is not a cheap test. Another option is to see an opthamologist that specializes in thyroid eye disease. I see one because the TSI levels were still high and he was watching my eyes for changes. If you have antibodies, be sure you read about them so you know what they are and make sure they are being monitored along with your TSH.

Oh and just FYI, someone can have both antibodies (one that causes hypo, one that causes hyper) and they cancel each other out keeping the thyroid stable - but they antibodies can still cause harm elsewhere - like the TSI harming the eyes.

Good luck hon!

 

[Poohbear5]

So my questions beyond the foggyness - do you notice any change in your eye - like is is bigger/wider than the other one (more of the color showing?), do you have any dryness (symptom would be your eye watering, which is opposite what you would think)? If you have either of these, it could be TSI.

Anyway - ask your doctor to check the hypo antibodies if she hasn't already and talk with her about TSI antibodies. My PCP didn't know about the TSI antibodies so she didn't test them. It is not a cheap test. Another option is to see an opthamologist that specializes in thyroid eye disease. I see one because the TSI levels were still high and he was watching my eyes for changes. If you have antibodies, be sure you read about them so you know what they are and make sure they are being monitored along with your TSH.

Wow! Guess I'd better do more reading to know what all these terms are. I requested and received my labs in yesterday's mail but not sure what all the numbers mean yet.

My eye doesn't look bigger (to me anyway) just feels foggy and dry. I have an appt. with an opthtamologist in 2 weeks.

Is there a good site that you can direct me to get easy to understand info. about thyroids and what the tests and numbers mean?

 

[mrsklamc]

Poohbear5- I'm sorry, I don't know of a good website for you.

My appointment with the new endo is tomorrow, I have a LIST of questions, I hope it goes well!

 

[luvmarypoppins]

And speaking of "eye" problems

My L eye is now tearing every now and then. I am going to the endo next month. Is this something that happens post RAI or could it be a med thing? My synthroid has been the same for about a year. Anyone else have this problem?

Micayla - can you give us a little update of your drs. visit? Hope all went well and that you got all your questions answered and that you like the dr. too and feel comfortable with him/her.

 

[mrsklamc]

And speaking of "eye" problems

My L eye is now tearing every now and then. I am going to the endo next month. Is this something that happens post RAI or could it be a med thing? My synthroid has been the same for about a year. Anyone else have this problem?

Micayla - can you give us a little update of your drs. visit? Hope all went well and that you got all your questions answered and that you like the dr. too and feel comfortable with him/her.

I hope you get that straightened out. Could even just be allergies.

I am so goofy- My appointment is actually TOMORROW at 4. I will let you know how it goes!

 

[kathleena]

Yes, RAI can result in some thyroid eye disease symptoms

Here's a website. http://thyroid.about.com/gi/o.htm?z.../www.thyroid-info.com/articles/thyroideye.htm

And reading for TSI antibodies, most of it is pretty "medical" but here's some stuff

http://www.hopkinsmedicine.org/endocrine/graves/TopicAnswer.asp?QuestionID=22


http://thyroid.about.com/cs/hyperthyrdgraves/a/10things.htm

Here's a good forum for questions, Elaine Moore is great.

http://forums.about.com/ab-thyroid2

 

[Poohbear5]

Thanks for those website links!

 

[MariDisney]

I had my surgery follow up this morning. Much to my surprise they did find some cancer in the thyroid. Thankfully, it was small (3.5 mm). There were also some smaller "just starting" spots (I forget what he called that). The surgeon was very reassuring about the fact that it's gone and that should be the end of it. He assumes my endocrinologist will not want the RAI. I hope that's the case, because the whole point in my starting down this road was so that my reproductive endocrinologist will proceed with my fertility treatments.

Would love to hear from anyone who had a cancer situation similar to mine. The doctor was very encouraging, but of course hearing the words makes me somewhat anxious.

I see my endocrinologist on March 18th.

 

[ceemys]

Hi all! I wonder why I haven't seen this thread! I have had Hypothyroid problems for about 6 years now. I used to be able to keep very slender and I used to have thick long hair. Unfortunately, my hair sucks!! It is stringy, breaks off super easy and just falls out. I struggle to keep the weight down. My levels fluxuate so much. I have been on a dosage as low as 50mcg to 112 and then alternating, now I am on 100mcg and will go back again in 3 more weeks.

I am so glad to find others that are as frustrated like me. I haven't found anything to help with my hair.

 

[mrsklamc]

I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.

Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?

 

[angwill]

Hi all! I wonder why I haven't seen this thread! I have had Hypothyroid problems for about 6 years now. I used to be able to keep very slender and I used to have thick long hair. Unfortunately, my hair sucks!! It is stringy, breaks off super easy and just falls out. I struggle to keep the weight down. My levels fluxuate so much. I have been on a dosage as low as 50mcg to 112 and then alternating, now I am on 100mcg and will go back again in 3 more weeks.

I am so glad to find others that are as frustrated like me. I haven't found anything to help with my hair.

I have the same issues as you plus super dry skin. It is even more frustrating that some people with hypothyroid have no problems with weight and/or hair thinning and dry. My aunt has hypothyroidism with no weight problems and tells me it should not be an issue since it isn't for her.

I have tried different things with my hair from Nioxin to store brand products for thinning hair. Nioxin did nothing but the store brands helped give it body which makes it look fuller and like I have more hair.

 

[Christine]

I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.

Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?

Glad to hear your appointment went well.

Yes 127 is really high. But you won't get a true reading until at least 6 months after your RAI treatment. The treatment is still doing its job in your thyroid cells.

I've always had a very low thyroglobulin, even right after surgery many years ago. It has stayed undetectable. Everything I've heard is that they like it to be "undetectable." They will accept anything under 2 and do nothing. Once it starts going above that, they know that they are dealing with residual disease.

 

[mrsklamc]

I may not understand exactly how this marker works, but I don't understand why they just don't screen every 20-something woman for it at least. She said I'd probably had this for 20 years!

 

[Christine]

I have the same issues as you plus super dry skin. It is even more frustrating that some people with hypothyroid have no problems with weight and/or hair thinning and dry. My aunt has hypothyroidism with no weight problems and tells me it should not be an issue since it isn't for her.

I have tried different things with my hair from Nioxin to store brand products for thinning hair. Nioxin did nothing but the store brands helped give it body which makes it look fuller and like I have more hair.

I don't have hypothyroidism but I have lost my thyroid due to cancer. Throughout the years I have been on a roller coaster with my TSH and hormone levels. None of it has ever caused me to put on an excessive amount of weight or anything else. I have superdry skin but I've always had that even when I had a "good" thyroid gland. My son also has that so I think it's just us.

I did have "hair" problems and fatigue problems and I blamed my thyroid or synthetic hormones for so long. Turned out I had a very subtle case of iron deficiency. I am also deficient in Vitamin D. When I started working on the iron, my hair came back very thick. I don't have or never had anemia, just low iron. I am now working on the Vitamin D but it is a slow process.

My point of this post is that we can't blame the thyroid for everything. If your levels are stable, it's most like not the culprit. It is very easy to want to blame it because every magazine, newspaper, or post on the DIS will tell you it's your thyroid. You need to investigate many things before you can decide on that.

 

[mrsklamc]

I don't have hypothyroidism but I have lost my thyroid due to cancer. Throughout the years I have been on a roller coaster with my TSH and hormone levels. None of it has ever caused me to put on an excessive amount of weight or anything else. I have superdry skin but I've always had that even when I had a "good" thyroid gland. My son also has that so I think it's just us.

I did have "hair" problems and fatigue problems and I blamed my thyroid or synthetic hormones for so long. Turned out I had a very subtle case of iron deficiency. I am also deficient in Vitamin D. When I started working on the iron, my hair came back very thick. I don't have or never had anemia, just low iron. I am now working on the Vitamin D but it is a slow process.

My point of this post is that we can't blame the thyroid for everything. If your levels are stable, it's most like not the culprit. It is very easy to want to blame it because every magazine, newspaper, or post on the DIS will tell you it's your thyroid. You need to investigate many things before you can decide on that.

Very true. I have had a horrible time losing weight, and the new endo said "Of course you do. You are very petite and could function well on 1200 calories a day, which is very difficult to do in our society."

 

[luvmarypoppins]

I did love the new doc. She was a bit more frank with me- For example no one had told me this has a 20-30 percent recurrence rate or that sometimes lymph nodes are resistant to RAI. She moved my scan up to August rather than December. All in all, I was quite pleased.

Another thing she mentioned that no one else has- whatever the thing in your blood is that is a 'cancer marker'- can't remember the terminology- thyroglobulin maybe? It was 127. She said they like it to be 2. Is that really, really high compared to what you guys have seen?

I am glad you liked the endo. Wow, that number does seem high. I think mine was practically undetectable after the RAI. But my scan showed a remenant. I think mine will definetely come back since its so agressive. The columnar cells are 3 times larger than reg. ones. I actually saw a picture of my cancer, oh what fun! Its just a matter of when. I already talked to the dr. about the surgical plan. Yeah, his np told me it could come resistant too. Mine will come back in the R side since all my L side lymph nodes were taken out already.

Was your scan moved up at her request? So it doesnt have to be exactly 1 year? Mine will actually be 13 months when it gets done in May.

Its good you got all your questions answered.

 

[Christine]

I may not understand exactly how this marker works, but I don't understand why they just don't screen every 20-something woman for it at least. She said I'd probably had this for 20 years!

If you have thyroid cells, they produce a protein called thyroglobulin. Thyroglobulin is the marker they are measuring.

If you have your thyroid gland removed and then, further, have RAI done to it, you should have no thyroid cells so, ergo, no thyroglobulin.

The marker is totally unreliable in a normal person with a thyroid gland because they WILL produce thyroglobulin. Normal thyroid cells, as well as thyroid cancer cells produce thyroglobulin.

It is a very good diagnostic tool in thyroid cancer patients who have had both a total thyroidectomy and RAI. It is not a reliable marker if you have only had a lumpectomy or partial thyroidectomy or if you have not had RAI. Because, theoretically, if you don't do all these things, you WILL have thyroid cells left that produce thyroglobulin.

Does that help?

 

[mrsklamc]

If you have thyroid cells, they produce a protein called thyroglobulin. Thyroglobulin is the marker they are measuring.

If you have your thyroid gland removed and then, further, have RAI done to it, you should have no thyroid cells so, ergo, no thyroglobulin.

The marker is totally unreliable in a normal person with a thyroid gland because they WILL produce thyroglobulin. Normal thyroid cells, as well as thyroid cancer cells produce thyroglobulin.

It is a very good diagnostic tool in thyroid cancer patients who have had both a total thyroidectomy and RAI. It is not a reliable marker if you have only had a lumpectomy or partial thyroidectomy or if you have not had RAI. Because, theoretically, if you don't do all these things, you WILL have thyroid cells left that produce thyroglobulin.

Does that help?

Yes, thank you! That makes so much more sense.

 

[es45]

Hi, all,

I just found this thread after spending so much time at the DCL and DVC threads, as well as others while planning vacations for the last couple of years. Amazing that I haven't seen it until today! I had thyroid cancer 20 years ago, with a recurrence 10 years ago. I had a biopsy this October for a growth detected during my regular neck ultrasounds: it was inconclusive so I'm just waiting for my next scan in April.

How great to find yet another helpful thread on the DIS