Thyroid Disease Forum banner
1 - 11 of 11 Posts

·
Newbie
Joined
·
16 Posts
Discussion Starter · #1 ·
Hi All,

Thank you for taking the time to read this and please let me know if you have any thoughts. The doctors all seem crazy to me and incompetent! yes, I very much believe in alternative medicine..but I also believe in Western medicine! I am a 35 yr old female. No children, boyfriend, cat and dog. I eat really healthy and generally exercise, though for about 5 months I didn't want to cause I had no energy, now my energy is back a little and I swim a little which is good because the water keeps me cool. Once i get hot i stay hot.

I went to an endo on Monday, who was rude and aggressive and did not indicate to me what was wrong?? Hashimotos? Graves? he just said, take Tapazole and if the problem goes away everything is ok. He added,
"these pills may cause death but none of my patiesnts have died yet. hahaha"

I plan to see a new endo next week.

About 6 months ago I started having all the classic syptoms of Hyperthryoid. Hot, sweats, hungry, lost weight, etc.. I also started having stomach pain so went to my G.I. liver enzymes were high.

Referred to GP. Thyroid tests as follows:
7/31/09

T3 Uptake: 42 Normal: 22-35
T4(thyroxine) 18 Normal: 4.5-12.5
Free T4: 7.8 Normal: 1.4-3.8
Liver enzymer were 3x's normal. (these have slowly but surely been coming downm not normal yet...)

Following this was a CT scan (this is why I haven't had a Thyroid Uptake test yet, b/c of the iodine) then a PET scan. They found several small nodes in my neck and a 2cm medistinal mass on the aortic arch.

Then on 9/2

T4 free 3.9 Normal .8-1.8
t4 (thyroxine) 19.1 normal 4.5-12.5
TSH 3rd Gen .01 Normal .4-4.5

This was done by the oncologist who i was sent to after they saw the mass. He thought everyone jumped the gun, tested me for "cancer enzymes" ? and said he thinks im ok. But that he wants to biopsy my neck after i see an endocrinologist.

So I go see the nightmare endo and off to the surgeon. Who was more of a stand-up comedian/player than someone who engendered my confidence. But when he felt it and said I dont think we need to biopsy the neck I was relieved. (where the mass in my chest is is very difficult to biopsy) this requires a heart surgeon, so it is a big deal. They are trying to rule out lymphoma.

Hyperthyroid COULD be causing swollen lymph nodes right?

The endo tested my blood on 9/14:

T4 3.6 Normal .8-1.8
T3 free 1012 (1st time this test was done) normal 230-420
Thyroid peroxidase antibodies 76 normal <35

So i called the surgeon back today and asked how he could rule out a problem with the mass on my chest? Was lymphoma ruled out? He stumbled around and said oh..well..... I guess maybe we should test the one in your neck. (WHAT????) I asked him how just a few days ago he said not necessary. I explained, i DONT want to do a biopsy unless HE thinks its necessary and he replied well, since you seem to be concerned we should do it. It was the comedy of errors, i kept saying im not concerned unless he was.

So now...

I have been seeing an accupuncturist who has helped me soooo much. My symptoms have been reduced by 60% since I started 6 weeks ago. Also, saw a naturopath who has me doing a vegetable fast with metagenics ultraclear which has plenty of rice protein. this is to help preclude aggravation of the thyoid from food and to help me detox. I feel fine, though i really feel like some bread with everything on it!

I would very much prefer not to take meds if possible. My pulse is now 86 compared to 109. My breathing is significantly better. but my numbers are still way off.

How do they actually name my disease? Why cant he tell me? He said the Thyroid Uptake test was just for diagnosing what is physically happening inthe thyroid. i should add, as a few people have mentioned it on boards...that I had a traumatic incident around the time this all started that caused me ENORMOUS stress and I am working on letting go what i cannot control. I feel like i have but apparently not, everytime I think about it my throat throbs. :(

Any thoughts and feedback will be greatly appreciated!
Sending you all lots of healing!
Antoinette
 

·
Premium Member
Joined
·
19,367 Posts
Just letting you know I have read your post. I need to review this several times and give it a lot of thought. Just wanted you to know you are not being ignored.

I will tend to this this afternoon. It is complex.
 

·
Premium Member
Joined
·
19,367 Posts
Goingtogetbetter said:
Hi All,

Thank you for taking the time to read this and please let me know if you have any thoughts. The doctors all seem crazy to me and incompetent! yes, I very much believe in alternative medicine..but I also believe in Western medicine! I am a 35 yr old female. No children, boyfriend, cat and dog. I eat really healthy and generally exercise, though for about 5 months I didn't want to cause I had no energy, now my energy is back a little and I swim a little which is good because the water keeps me cool. Once i get hot i stay hot.

I went to an endo on Monday, who was rude and aggressive and did not indicate to me what was wrong?? Hashimotos? Graves? he just said, take Tapazole and if the problem goes away everything is ok. He added,
"these pills may cause death but none of my patiesnts have died yet. hahaha"

I plan to see a new endo next week.

About 6 months ago I started having all the classic syptoms of Hyperthryoid. Hot, sweats, hungry, lost weight, etc.. I also started having stomach pain so went to my G.I. liver enzymes were high.

Referred to GP. Thyroid tests as follows:
7/31/09

T3 Uptake: 42 Normal: 22-35
T4(thyroxine) 18 Normal: 4.5-12.5
Free T4: 7.8 Normal: 1.4-3.8
Liver enzymer were 3x's normal. (these have slowly but surely been coming downm not normal yet...)

Following this was a CT scan (this is why I haven't had a Thyroid Uptake test yet, b/c of the iodine) then a PET scan. They found several small nodes in my neck and a 2cm medistinal mass on the aortic arch.

Then on 9/2

T4 free 3.9 Normal .8-1.8
t4 (thyroxine) 19.1 normal 4.5-12.5
TSH 3rd Gen .01 Normal .4-4.5

This was done by the oncologist who i was sent to after they saw the mass. He thought everyone jumped the gun, tested me for "cancer enzymes" ? and said he thinks im ok. But that he wants to biopsy my neck after i see an endocrinologist.

So I go see the nightmare endo and off to the surgeon. Who was more of a stand-up comedian/player than someone who engendered my confidence. But when he felt it and said I dont think we need to biopsy the neck I was relieved. (where the mass in my chest is is very difficult to biopsy) this requires a heart surgeon, so it is a big deal. They are trying to rule out lymphoma.

Hyperthyroid COULD be causing swollen lymph nodes right?

The endo tested my blood on 9/14:

T4 3.6 Normal .8-1.8
T3 free 1012 (1st time this test was done) normal 230-420
Thyroid peroxidase antibodies 76 normal <35

So i called the surgeon back today and asked how he could rule out a problem with the mass on my chest? Was lymphoma ruled out? He stumbled around and said oh..well..... I guess maybe we should test the one in your neck. (WHAT????) I asked him how just a few days ago he said not necessary. I explained, i DONT want to do a biopsy unless HE thinks its necessary and he replied well, since you seem to be concerned we should do it. It was the comedy of errors, i kept saying im not concerned unless he was.

So now...

I have been seeing an accupuncturist who has helped me soooo much. My symptoms have been reduced by 60% since I started 6 weeks ago. Also, saw a naturopath who has me doing a vegetable fast with metagenics ultraclear which has plenty of rice protein. this is to help preclude aggravation of the thyoid from food and to help me detox. I feel fine, though i really feel like some bread with everything on it!

I would very much prefer not to take meds if possible. My pulse is now 86 compared to 109. My breathing is significantly better. but my numbers are still way off.

How do they actually name my disease? Why cant he tell me? He said the Thyroid Uptake test was just for diagnosing what is physically happening inthe thyroid. i should add, as a few people have mentioned it on boards...that I had a traumatic incident around the time this all started that caused me ENORMOUS stress and I am working on letting go what i cannot control. I feel like i have but apparently not, everytime I think about it my throat throbs. :(

Any thoughts and feedback will be greatly appreciated!
Sending you all lots of healing!
Antoinette
Okay; here is what I have turned up. Anything is possible but it is not common for hyperthyroidism alone to cause swollen lymph nodes.

And in your case w/ the mediastinal mass; Hodgkin's Lymphoma does come to mind and it must be ruled out. It depends on where the mass is located. This gives a clue as to whether it is the thymus, Hodgkin's or whatever the case may be which you can read about here.....

http://www.med.yale.edu/intmed/cardio/imaging/findings/mediastinal_mass/index.html

So................this really has to be explored as a possiblity for the swollen lymphs.

On the brighter side of things, as you know, there are many many other possible reasons for swollen lymphs such as mono, lyme disease, lupus, sjogren's and so on.

Your labs certainly point to hyper and you the clinical symptoms you describe are hyper also. So, it would be good for you to be on antithyroid med and perhaps even a betablocker if you have tachycardia.

It is my humble opinion that you work closely w/ your oncologist. This is one field of medicine were folks really have their act together. And if you are not comfortable w/ your current endo, you have every right to find one that suits your needs. Perhaps the surgeon can recommend a good one for you, I am thinking.

I do want you to know that I care very much about what you are going through right now. When I read a post like yours, I wish to God that I was a doctor and could offer more help than I am able. I know others here feel much the same way at times.

Just know we are here for you and naturally we will all be very very interested in every single step of your journey with this.

Actually, the treatment is pretty much the same whether you are in Hashimoto's Hyper state or in Graves' state. If you have exophthalmos, goiter, pretibial myxedema, thyrotoxicosis..................that all points to Graves'.

Another point; the mediastinal mass could also be from an enlarged heart or aorta. So you see, you do need some expert help here; very much so. I am praying that you find a very very knowledgable doctor to help you through this.
 

·
Premium Member
Joined
·
19,367 Posts
I forgot to also mention that taking Tapazole can put further stress on your liver. When I was on Tapazole, I had to get liver enzymes tested frequently.

This is another thing that should be discussed with your doctor.

I am just adding things as I think of it. Hope you don't mind it in bits and pieces.

It's a lot to comprehend.

Are you taking any medications? For example, I find that statins (some) for cholesterol can cause liver enzymes to rise.

They say hypothyroid does this too but I cannot find anything that says hyperthyroid causes liver enzymes to rise although that is not to say it does not.
 

·
Newbie
Joined
·
16 Posts
Discussion Starter · #5 ·
Thank you so much for your posts, I didn't realize you had responded...

I guess i should have the lymph in my neck biopsied...yes they said it could be thymus it did have a higher FDG uptake than the mediastinum which is what concerned them but,,, I guess its best to get it checked ASAP.

The only medication i am on (went on after my blood tests) is Zegrid for stomach acid. I have Barretts patches on my esophogus and apparently i should have been on something all the time to blosk the acid to make sure it doesnt progress to "C" but at least I'm on it now.

Thank you again and you are in my prayers...
 

·
Premium Member
Joined
·
19,367 Posts
Goingtogetbetter said:
Thank you so much for your posts, I didn't realize you had responded...

I guess i should have the lymph in my neck biopsied...yes they said it could be thymus it did have a higher FDG uptake than the mediastinum which is what concerned them but,,, I guess its best to get it checked ASAP.

The only medication i am on (went on after my blood tests) is Zegrid for stomach acid. I have Barretts patches on my esophogus and apparently i should have been on something all the time to blosk the acid to make sure it doesnt progress to "C" but at least I'm on it now.

Thank you again and you are in my prayers...
Aw; you sure have quite a few things going on. A lot of it could be tied together and I sure hope for that. You know how dominoes are. One falls and it's a trickle down effect.

Glad to hear that you are only on one med. My tenet is "Less is always better" when it comes to meds. It also keeps things uncomplicated. Too many meds and you could just go nuts trying to figure things out and I know you agree w/ that!

Just know that we are here for you and as I said before, "One day at a time, one step at a time!"

If you decide to do the biopsy, please let me (us) know and I will ramp up the prayers on that day.

Sending good thought and good vibes:party0006:
 

·
Premium Member
Joined
·
19,367 Posts
Goingtogetbetter said:
Thank you so much for your posts, I didn't realize you had responded...

I guess i should have the lymph in my neck biopsied...yes they said it could be thymus it did have a higher FDG uptake than the mediastinum which is what concerned them but,,, I guess its best to get it checked ASAP.

The only medication i am on (went on after my blood tests) is Zegrid for stomach acid. I have Barretts patches on my esophogus and apparently i should have been on something all the time to blosk the acid to make sure it doesnt progress to "C" but at least I'm on it now.

Thank you again and you are in my prayers...
Are you doing okay? Will be anxious to hear from you when you can.
 

·
Newbie
Joined
·
16 Posts
Discussion Starter · #8 ·
Hi~
its so weird, my brain fog made me forget about the site!

Ok, so here''s the scoop.. my oncologist is back in town, he is sending me to a new endocrinologist. They are going to finally biopsy my neck for the following purpose. A)if they find somehting they know they have to start trating this thing in my chest (though there is no known survival rate over 5 years so I don't think I would bother with the horrendous treatment honestly) or B) they find nothing in my neck and have to CT Scan me every few months to keep an eye on this thing in my chest...mind you the CT Scan involves iodine.

Though, I met a woman last week who was extremely hyper and she said that she felt WAY better after the injection and continued on a course of naturaopathic medicine involving TAKING idodine with hyperthyroidism and her #'s came back to normal~??~ looks like there's many ways to recovery?

Has anyone else ever heard of this? I have read a lot about it now, since hearing it. It appears non-western medicine believed in continuing to give the body iodine even with hyper,,,whereas western says avoid completely.

Both having had good results...if that's not confusing I dont know what is!??!
 

·
Premium Member
Joined
·
19,367 Posts
Goingtogetbetter said:
Hi~
its so weird, my brain fog made me forget about the site!

Ok, so here''s the scoop.. my oncologist is back in town, he is sending me to a new endocrinologist. They are going to finally biopsy my neck for the following purpose. A)if they find somehting they know they have to start trating this thing in my chest (though there is no known survival rate over 5 years so I don't think I would bother with the horrendous treatment honestly) or B) they find nothing in my neck and have to CT Scan me every few months to keep an eye on this thing in my chest...mind you the CT Scan involves iodine.

Though, I met a woman last week who was extremely hyper and she said that she felt WAY better after the injection and continued on a course of naturaopathic medicine involving TAKING idodine with hyperthyroidism and her #'s came back to normal~??~ looks like there's many ways to recovery?

Has anyone else ever heard of this? I have read a lot about it now, since hearing it. It appears non-western medicine believed in continuing to give the body iodine even with hyper,,,whereas western says avoid completely.

Both having had good results...if that's not confusing I dont know what is!??!
I am glad you have stopped in. I do like to follow up on posters and I "do" care..............a lot.

First and foremost, we have to get a diagnosis. Then decide on a treatment option. You may combine the best of all possible worlds. I think in eclectic terms as well.

When is the biopsy scheduled? Please let me know because when I say I pray for you, I "really" do. I am doing that now but will ramp it up on the day of the biopsy.

Sending you hugs, white light, good karma and good thoughts also.
 

·
Newbie
Joined
·
16 Posts
Discussion Starter · #10 ·
Andros,
A question... I know Goitrogens include things like broccoli, brussel sptouts, kale etc... and these are helpful for hyperthyroid right? they inhibit the production of some thyroid hormone...is this right? Then what about soy? Is soy ok for hyperthyroid? Or what about hypo? I've done research but am still a little confused.
Thank yoU!!!
 

·
Premium Member
Joined
·
19,367 Posts
Goingtogetbetter said:
Andros,
A question... I know Goitrogens include things like broccoli, brussel sptouts, kale etc... and these are helpful for hyperthyroid right? they inhibit the production of some thyroid hormone...is this right? Then what about soy? Is soy ok for hyperthyroid? Or what about hypo? I've done research but am still a little confused.
Thank yoU!!!
L-Carnitine (an amino acid) would be best. You could not eat enough goitrogens to make a difference that would be significant but yes, do eat them. Soy can make you estrogen dominant so I recommend avoiding that.

L-Carnitine............... http://jcem.endojournals.org/cgi/content/full/86/8/3579

If you chose to do the above; please please let your doctor know before you do it. I am not a doctor; I just happen to know this.

Plus, I would not know if there are any negative side-effects from such large doses of L-Carnitine. We are talking grams here.
 
1 - 11 of 11 Posts
Top