# New to group have some questions



## tishka (Oct 4, 2011)

Hello to all of you....I came across this site about a week ago and just today I have decided to ask a few questions. I have been going thru living hell for the last 4 1/2 years. And acutally think it has been a little longer. I was told when I was 20 that I had hashimoto's. I had a goiter and very very tired. Saw endo and he told me after tests that is what I had and with synthroid and time felt great for years. Fast forward 10 years. Gained horrible amount of weight. I know it was some from steroids I was on for lupus/ra ( diagnosised at 23) but my thyroid went bad...I had moved and so I traveled 3 hours to go see old endo. He increased my synthroid and I did a little better....again fast forward almost 10 years. I started feeling shaky..sweating profusely..nausea all the time. They thought it was my med's I was on. Took me off. But then about 4 years ago my eyes would ache. I then had horrible facial swelling. Pcp did blood work and said I was hyperthyroid. I just didn't believe him....but I was. I continued with lowering my med's. Until I was on the lowest dose possible. My eyes still continued to get worse...saw doc and he sent me to ent then they sent me to eye doc.....they all thought was sinuses. I kept getting horrible pain. Then two years ago I landed in hospital with chest pain rapid heart rate and just felt like I was going to die. At the time the put me in hospital I had TSH of 187. No that is not a typo! I had gone from hyper to hypo in 2 months. I had some hardening of my heart muscle that they checked into. Still have issues with that and being out of breathe easy. Ok because of that I was sent to big name hospital with endo....when he saw me the first thing he said was you have a very bad case of thyroid eye disease!!!! I have spent 2 years getting surgeries done to have my eyes back. Still need one more...ugh. But they still say I have Grave's disease....my new endo is testing new things and took me off all med's. I am feeling horrible...my newest test results are
TSH 11.60 ranges 0.34-5.60
Free T4 0.6 ranges 0.6 - 1.2
TSH receptor AB 2.46 < 1.76 ( I was 6.8 last year?)
thyroid stimulating immunoglobulin 107 range <128

I am tired!!! I sweat still all the time and shake....then later in the day I am cold. But again at night I am hot and sweat. Endo even thinks that is odd that I am swinging back and forth. She is keeping me off of all thyroid meds for at least another month and right now I want die....
I own a horse stables and daily take care of 20 horses that have to be fed and cleaned up after...rain or shine. I need my strength back and don't know what to do anymore.
I am so sorry this is so long...venting I guess. It just I am lost here.
Thank you


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## webster2 (May 19, 2011)

Welcome, I sure am sorry for all that you been through. Graves stinks. Don't worry about a long post. I hope someone will be able to help you with those horses. Your story makes me feel sad for you & all you have been through. Hopefully, someone will some encouraging bits will be along soon. You're in my thoughts.


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## Octavia (Aug 1, 2011)

tishka, welcome to the forum, and HOLY COW!!!! It truly pains me to see stories like yours...this should not happen.

You are feeling horrible because you are hypo right now. How long have you been off thyroid replacement, and when were those lates labs drawn?

Are you about in your mid/late 40's now?

Has the doctor brought up the possibility of surgery/thyroidectomy to (hopefully) end this rollercoaster once and for all?


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## tishka (Oct 4, 2011)

Thank you for your warm welcoming ... I have been off my levo for almost seven weeks. And yes I am in my 40's ... But no its not menopause ....had full hysterectomy when I was 23 ...had cervical cancer. So I know that is not it....Doc did say about blocking therapy....or surgery or meds with symptoms. I want it gone ... Just to tired now


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## Andros (Aug 26, 2009)

tishka said:


> Hello to all of you....I came across this site about a week ago and just today I have decided to ask a few questions. I have been going thru living hell for the last 4 1/2 years. And acutally think it has been a little longer. I was told when I was 20 that I had hashimoto's. I had a goiter and very very tired. Saw endo and he told me after tests that is what I had and with synthroid and time felt great for years. Fast forward 10 years. Gained horrible amount of weight. I know it was some from steroids I was on for lupus/ra ( diagnosised at 23) but my thyroid went bad...I had moved and so I traveled 3 hours to go see old endo. He increased my synthroid and I did a little better....again fast forward almost 10 years. I started feeling shaky..sweating profusely..nausea all the time. They thought it was my med's I was on. Took me off. But then about 4 years ago my eyes would ache. I then had horrible facial swelling. Pcp did blood work and said I was hyperthyroid. I just didn't believe him....but I was. I continued with lowering my med's. Until I was on the lowest dose possible. My eyes still continued to get worse...saw doc and he sent me to ent then they sent me to eye doc.....they all thought was sinuses. I kept getting horrible pain. Then two years ago I landed in hospital with chest pain rapid heart rate and just felt like I was going to die. At the time the put me in hospital I had TSH of 187. No that is not a typo! I had gone from hyper to hypo in 2 months. I had some hardening of my heart muscle that they checked into. Still have issues with that and being out of breathe easy. Ok because of that I was sent to big name hospital with endo....when he saw me the first thing he said was you have a very bad case of thyroid eye disease!!!! I have spent 2 years getting surgeries done to have my eyes back. Still need one more...ugh. But they still say I have Grave's disease....my new endo is testing new things and took me off all med's. I am feeling horrible...my newest test results are
> TSH 11.60 ranges 0.34-5.60
> Free T4 0.6 ranges 0.6 - 1.2
> TSH receptor AB 2.46 < 1.76 ( I was 6.8 last year?)
> ...


Gosh!! Welcome!

Have you had RAIU (radioactive uptake scan?) If not, I would like to encourage you to insist upon it.

The most important thing is to check for cancer.

Also there are binding, blocking and stimulating antibodies and immunoglobulins. You have TSI which is thyroid stimulating immunoglobulin and you "probably" have TBII [TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)
http://www.ncbi.nlm.nih.gov/pubmed/1969138 (good test for TSHR)] which is causing your TSH to be high and possibly the Free T4 to be low depending on what meds you were on.

Which leads me to ask; what meds were you on and when were you taken off of them?

Let me see if I understand all this. You have not had your thyroid removed. Correct? It sounds like you had a Thyroid Storm; did anyone ever say?

Bless your heart; you are really not feeling well and I am so sorry. I hope that some of us can help but I do know one thing; you will have many friends here. We are a very supportive group.

Here is some info on the TSI just in case.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html










How are your eyes doing now?


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## tishka (Oct 4, 2011)

Hello again....I really appreciate all the support I have been recieving here. Its so hard to explain to my family what hell this thyroid is causing me.
No I haven't had a RAIU for probably 20 years. My endo did take me off synthroid to have one done but when my blood work from 2 1/2 weeks ago came back mild hypo she changed her mind and started the antiboties search. She is getting another one done...but it has to be sent to the Mayo clinic. Was surprised since I am going to Oregon Health Science University. I started that 2 years ago. My first endo left the practice and this new doc has only had my case since August. 
The only med,s I have been on lately is levothyroxine and propananolol (sp) The other meds I was on in the past was for my lupus/ra and have been off those for over 3 years. 
I have an appt. down at OHSU on tuesday for my eyes. They are much better than when i started this horrible journey. I had to have orbital decompression surgery, plus sinus surgery....sinuses were compromised from all the swollen tissue around eyes. I had stabimus surgery this past summer...that is much better but I will never have normal vision again. Next is surgery for my eye lids...still have a lot of problems with blinking and my eyes don't close all the way with sleeping.
I didn't know about the TSI not suppose to be in the blood at all. And tsh receptor ab has gone down. I do appreciate all the new info you gave me....and the guidance. I too have worried about cancer. It makes me concerned how my thyroid has changed from being so hypo for so very many years...about 15 then all of sudden I am hyper with this other issues. I do have two nodules on right lower lobe. They are both about 7mm and they said they were to small to do a fine needle aspiration. The previous endo did do a ultrasound twice to watch if they had changed and I guess they hadn't. I also have a lymph gland that sits right next to my carotid artery that is large also. 
Gosh I am so sorry I am rambling again, Its nice to chat with someone that understands and their eyes dont glaze over....lol


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## Andros (Aug 26, 2009)

tishka said:


> Hello again....I really appreciate all the support I have been recieving here. Its so hard to explain to my family what hell this thyroid is causing me.
> No I haven't had a RAIU for probably 20 years. My endo did take me off synthroid to have one done but when my blood work from 2 1/2 weeks ago came back mild hypo she changed her mind and started the antiboties search. She is getting another one done...but it has to be sent to the Mayo clinic. Was surprised since I am going to Oregon Health Science University. I started that 2 years ago. My first endo left the practice and this new doc has only had my case since August.
> The only med,s I have been on lately is levothyroxine and propananolol (sp) The other meds I was on in the past was for my lupus/ra and have been off those for over 3 years.
> I have an appt. down at OHSU on tuesday for my eyes. They are much better than when i started this horrible journey. I had to have orbital decompression surgery, plus sinus surgery....sinuses were compromised from all the swollen tissue around eyes. I had stabimus surgery this past summer...that is much better but I will never have normal vision again. Next is surgery for my eye lids...still have a lot of problems with blinking and my eyes don't close all the way with sleeping.
> ...


As you probably saw in my siggie, I have Lupus also. My doc and I have found that by keeping my TSH suppressed, that also keeps the Lupus antibodies suppressed. (Anti-DNA, C3, C4)

I feel for you w/ the eyes. I had exophthalmos so bad, the globes were touching the lens of my glasses. I had orbital decompressions to both orbits. The Ethmoid sinus' were removed as well as some of the orbital floor and fatty tissue to make room to put the globes back in place. I opted out of the strabisimus surgery because I read it has to be re-done every 7 to 10 years. I have prisms in my lens which work perfectly fine to correct that. I also had the meuhlerectomy to both eyelid muscles. Also,2000 RADS of radiation to the eyes 3 times a week for 6 weeks. Prior to the surgery, of course.

So.............I am here for you!

I don't like to hear about the lymph gland. That could suggest papillary cancer. Would urge you to get RAIU so everyone can see what the heck is going on.

Let us know how I and others here can assist you. If nothing else, we offer plenty of support!


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## tishka (Oct 4, 2011)

The eye specialist went right to surgery with me ...said my optic nerve was so stretched that I was close to losing my vision . I also did the prism in my glasses....but out in barn with looking down and up I needed better help. I don't regret it....was a mild surgery compared to the decompression. But now the last couple of days I have been choking on my food .... Throat feels thick but doesn't look more swollen from outside . 
I too have worried about the lymph gland. They just keep ultrasounding it to see if it has grown larger. I am truly scared that its more and they aren't looking hard enough .
Thanks for all the support ...


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