need help

[sgarrahy]

Hello. I was finally diagnosed with Hashimoto's about three months ago. I am probably not alone in the idea that I was happy to finally be diagnosed with something, I wasn't crazy- a hypochondriact- or a lazy drug seeker, but sad to know this was not a "curable" illness.

Everything really began, or became noticable, six years ago after the birth of my second child. I began having frequent migrains, vertigo, and constant noise in my ears. First, they thought it was a problem with my birth control pill. Changed that, but then I began having irregular periods and ovarian cysts. Was told I would have to wait and see. My other symptoms began, but were never considered to be an outline of a larger single issue.
*nystagmus
*heavy periods that would last for two weeks and then stop for a week and then continue (resulted in uterine
ablation therapy)
*hyperpigmentation
*acne, almost boil like bumps on back and in hairline
*vision changes
*fatigue
*muscle weakness
*joint pain (tested for arthritis)
*weight gain (told to exercise more eat less- given inforation on medifast)
*depression
*mood swings
*inability to concentrate
*lost interest in my family, kids activities, my own training (was doing triathalons), my friends, school, etc.
*loss of short term memory
I now have an answer for all of these symptoms, but I have only been placed on 25 of synthroid. I contacted my dr and told him I felt no diference, but he stated I would have to wait for my December 15th apt. I have researched and read quite a few books now, but I still feel confused as to appropriate treatment.

I now have had this appointment today. I asked my doctor how I was he said I was fine. My TSH levels are fine. I told him that I did not have any change in my symptoms, and his response is now that I might have some other reason for these problems based on my tsh level. I also asked him again about t3, which the first time he said that there is no data to prove t3 works, but this time he said well if you want t3 I see no issue with it. So now I am to take 1/2 of a 25mcg of synthroid and 5 mcg of cytomel. Then I asked about the suppliments I read about. He looked at my list and then said, "Oh you are missing tyrosine" of which during my first appointment he said all I need is celenium. Then I asked again about diet (first appointment he said no diet changes necessary) and the benefits of a gluetin free diet, and this appointment he said it would be good for me to try to see how I feel for three weeks.

I am really confused and would like any help. Please I am reading books, but I don't understand why my doctor says I am fine, but I have been diagnosed with Hashi's and still feel like crap.


Any information will be great.

[Shannabeth]

Im not very experienced, I havent even been diagnosed with thyroid problems yet, but I do understand mixed signals from a doctor and how frustrating it is. I hope you get some firm answers and a plan that will help you heal. Someone will be along to give you some great advice, just know you arent frustrated alone.

[Andros]

Hello. I was finally diagnosed with Hashimoto's about three months ago. I am probably not alone in the idea that I was happy to finally be diagnosed with something, I wasn't crazy- a hypochondriact- or a lazy drug seeker, but sad to know this was not a "curable" illness.

Everything really began, or became noticable, six years ago after the birth of my second child. I began having frequent migrains, vertigo, and constant noise in my ears. First, they thought it was a problem with my birth control pill. Changed that, but then I began having irregular periods and ovarian cysts. Was told I would have to wait and see. My other symptoms began, but were never considered to be an outline of a larger single issue.
*nystagmus
*heavy periods that would last for two weeks and then stop for a week and then continue (resulted in uterine
ablation therapy)
*hyperpigmentation
*acne, almost boil like bumps on back and in hairline
*vision changes
*fatigue
*muscle weakness
*joint pain (tested for arthritis)
*weight gain (told to exercise more eat less- given inforation on medifast)
*depression
*mood swings
*inability to concentrate
*lost interest in my family, kids activities, my own training (was doing triathalons), my friends, school, etc.
*loss of short term memory
I now have an answer for all of these symptoms, but I have only been placed on 25 of synthroid. I contacted my dr and told him I felt no diference, but he stated I would have to wait for my December 15th apt. I have researched and read quite a few books now, but I still feel confused as to appropriate treatment.

I now have had this appointment today. I asked my doctor how I was he said I was fine. My TSH levels are fine. I told him that I did not have any change in my symptoms, and his response is now that I might have some other reason for these problems based on my tsh level. I also asked him again about t3, which the first time he said that there is no data to prove t3 works, but this time he said well if you want t3 I see no issue with it. So now I am to take 1/2 of a 25mcg of synthroid and 5 mcg of cytomel. Then I asked about the suppliments I read about. He looked at my list and then said, "Oh you are missing tyrosine" of which during my first appointment he said all I need is celenium. Then I asked again about diet (first appointment he said no diet changes necessary) and the benefits of a gluetin free diet, and this appointment he said it would be good for me to try to see how I feel for three weeks.

I am really confused and would like any help. Please I am reading books, but I don't understand why my doctor says I am fine, but I have been diagnosed with Hashi's and still feel like crap.


Any information will be great.

Hi there!! 2 things concern me. The nystagmus and the hyperpigmentation.
Re the nystagmus; are you on any other meds? Here is info on that.
http://www.lowvision.org/nystagmus.htm

And re the hyperpigmentation; I would suggest being tested for Addison's. That was the first thing that came to mind. Sometimes we have more than one thing going on.

Hope you respond to the added T3. You should. Let us know!

http://img.photobucket.com/albums/v129/LuLu1471/ththsnow.gif

[northernlite]

I am still struck by your low T4 dosage. An approximate replacement dose for adults is 0.77 mcg/lb with an avg adult dose being between 100-125 mcg of Synthroid or Levothyroxine. 25 mcg seems so low.

I would suggest you get your lab results and share them with the group. Those with more experience than me could do some evaluation for you.

I am a Celiac and have been gluten free for 10 years. Only developed Hashi's this year. So I developed almost your entire list of symptoms while on a gluten free diet. I must say until I developed Hashi, the gluten free diet made me healthier in my 40's than I was in my 30's.

[lavender]

T4 doses are highly specific based on lab work. 25mcg may be appropriate for someone who still has a somewhat functional thyroid. Too much thyroid replacement can be very dangerous. Also, some docs start patients out slowly to give their bodies time to adjust to the meds. Too much too fast can make you just as miserable.

[sgarrahy]

Thank you for all of your input. I am not on any other medications regularly (except when I have a migraine), but I have started a large amount of suppliments I was told will help with the Hashi's.
Including:
5-HTP, acetyl-L-caritine, alph-lipoic-acid, calcium citrate-malate, coenzyme Q-10, conjugated linoleic acid, glutamine, patethine, celenium, pyruvate, taurine, and vitamin c.

My most recent test results TSH : 1.26, T4: 1.16, triiodothyrine, free, serum: 2.4. My previous test had thyroid peroxidase (TPO) Ab: 69 which was flagged as high and cortisol-AM at 10.1 ug/dl, and my chromogranin A: 6 nmol/L flagged as high, and my anti-mullerian hormone (AMH) was 0.3 ng/ml, IGF-1 Insulin-like growth factor I: 121 ng/ml

My thyroid ultrasound was:
right lobe: 5.5x2.2x1.8 cm marked heterogeneity of the parenchyma
left lobe: 5.4x1.9x1.4 cm marked heterogeneity of the parenchyma
isthmus: normal

I hope some of these values will help you help me understand a little better! :) I really feel like the more I read the more I get confused. I have been taking the t3 with 1/2 of my 25 mcg of synthroid for 3 days now, but I would like to feel better sooner than later (like everybody else). Also, after reading I asked about adisons and he said he thought my corisol was fine.

[Andros]

Thank you for all of your input. I am not on any other medications regularly (except when I have a migraine), but I have started a large amount of suppliments I was told will help with the Hashi's.
Including:
5-HTP, acetyl-L-caritine, alph-lipoic-acid, calcium citrate-malate, coenzyme Q-10, conjugated linoleic acid, glutamine, patethine, celenium, pyruvate, taurine, and vitamin c.

My most recent test results TSH : 1.26, T4: 1.16, triiodothyrine, free, serum: 2.4. My previous test had thyroid peroxidase (TPO) Ab: 69 which was flagged as high and cortisol-AM at 10.1 ug/dl, and my chromogranin A: 6 nmol/L flagged as high, and my anti-mullerian hormone (AMH) was 0.3 ng/ml, IGF-1 Insulin-like growth factor I: 121 ng/ml

My thyroid ultrasound was:
right lobe: 5.5x2.2x1.8 cm marked heterogeneity of the parenchyma
left lobe: 5.4x1.9x1.4 cm marked heterogeneity of the parenchyma
isthmus: normal

I hope some of these values will help you help me understand a little better! :) I really feel like the more I read the more I get confused. I have been taking the t3 with 1/2 of my 25 mcg of synthroid for 3 days now, but I would like to feel better sooner than later (like everybody else). Also, after reading I asked about adisons and he said he thought my corisol was fine.

Off the bat, I know that L-carnitine is a goitrogenic and will cause hypo. I worry about the 5-HTP also.

It has some serious side-effects. http://www.nutritional-supplements-health-guide.com/5-htp-side-effects.html

The others, I don't know as I don't have time to look all of them up but I urge you to do so.

It would appear that you probably have some nodules as heterogenic means irregular but it is best to trust your doctor on this. Has he/she commented?

What do you think is causing hyperpigmentation?

Where you taking 5-HTP when you had the Chromogranin A lab test? You may wish to read what the test results indicate here and renal insufficiency is one of them
http://www.labtestsonline.org/understanding/analytes/chromogranin/test.html

Why did doc run anti-mullerian hormone? Are you trying to get pregnant, do you have endometriosis?

How are you feeling today? Is the T3 kicking in?

Sending hugs,
http://img.photobucket.com/albums/v129/LuLu1471/christmashugs.gif

[sgarrahy]

Trust me I wish I knew what was causing the hyperpigmentation! It has been a problem since I was about 22 y.o. As far as the anti-mullerian hormone they thought I might be premenapausal because I have night sweats. No I wasn't taking the htp-5 until about a week ago when I began the rest of the suppliments. I find it intesting that any of the suppliments would be goitrogenic considering my docotor said they were good and also I got the first info from a thyroid diet book, but I will do more indepth research.
As far as feeling better...I don't know if it is just my imagination, but I think I feel more mentally sharp and have a desire to be more energetic (haven't gotten all the way there yet but I am thinking about exercising and want to do it). Originally, on my last dr apt he was going to increase my synthroid to 50 mcg, until I asked about the t3. Again, any other info you can give me would be greatly appreciated. thank you and I will be following your links to more info.
As far as the nystagmus it is not constant and has been happening for about nine years. I had astigmatism before and then had lasix, but I beleive I had the nystagmus prior to the surgery.
Now, the info on the results of the Chromogranin A lab test are concerning, especially considering my doctor did not seem to have an issue with them. Is there anything you suggest I do?
Again, I am so greatful for your information.

[Debbie from Milwaukee]

Has any doctor ever mentioned (or tested you for) Addison's disease? Doesn't that produce hyperpigmentation?

[sgarrahy]

Yes, he said my cortisol level was fine.

[Andros]

Trust me I wish I knew what was causing the hyperpigmentation! It has been a problem since I was about 22 y.o. As far as the anti-mullerian hormone they thought I might be premenapausal because I have night sweats. No I wasn't taking the htp-5 until about a week ago when I began the rest of the suppliments. I find it intesting that any of the suppliments would be goitrogenic considering my docotor said they were good and also I got the first info from a thyroid diet book, but I will do more indepth research.
As far as feeling better...I don't know if it is just my imagination, but I think I feel more mentally sharp and have a desire to be more energetic (haven't gotten all the way there yet but I am thinking about exercising and want to do it). Originally, on my last dr apt he was going to increase my synthroid to 50 mcg, until I asked about the t3. Again, any other info you can give me would be greatly appreciated. thank you and I will be following your links to more info.
As far as the nystagmus it is not constant and has been happening for about nine years. I had astigmatism before and then had lasix, but I beleive I had the nystagmus prior to the surgery.
Now, the info on the results of the Chromogranin A lab test are concerning, especially considering my doctor did not seem to have an issue with them. Is there anything you suggest I do?
Again, I am so greatful for your information.

Here is info on L-carnitine......
http://www.ncbi.nlm.nih.gov/pubmed/11502782

It is used to treat Hyperthyroid because it is so effective.
http://www.suite101.com/content/l-carnitine-for-graves--disease-a11976

I think you need to press the doctor for further info and/opinion on this Chromogranin A. If necessary, confer with another doctor. I could not imagine why your doctor would not think this matters.

And I must say, I am grateful for you and also the fact that you are here. I just know we will all help best we can bearing in mind none of us are doctors,

We do have "inquiring minds" though.

As long as you are on T3, you don't have to worry much about the FT4 as it is naturally kept lower when taking T3 because T3 "is" your active hormone.

Here is more info on the Chromogranin A. And I have to tell you, I never heard of this before. That is one of many reasons I love to help posters because I learn soooooooooooooooo much.

http://en.wikipedia.org/wiki/Chromogranin_A

http://img.photobucket.com/albums/v129/LuLu1471/animations_xmaslights.gif

And,I am still going to push for further evaluation for Addison's Disease
http://www.webmd.com/skin-problems-and-treatments/guide/hyperpigmentation-hypopigmentation

[Andros]

Has any doctor ever mentioned (or tested you for) Addison's disease? Doesn't that produce hyperpigmentation?

Right on Debbie; that is what I think. Especially with high titers of Chromogranin A. Adrenal Medula .....................

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