# Off to the ER again!



## mixer23 (Jun 21, 2011)

A little history.....Was diagnosed with hyperthyroidism in 1996. Had an uptake done that showed a "hot thryroid". The Endo at that time said that it was ok and not to worry because it will burn out. So no meds no nothing until this happens!!
In Nov 2010, I'm out of town visiting my son and grandbabies. Later in the evening as everyone was getting ready for bed I started getting short of breath. It last for a little bit then stopped. I told my son about it then went to bed. Early the next morning I woke up short of breath again and woke up son and told him I couldn't breathe. He took me to the Er. I was diagnosed with heart failure!! That scared me to death!! I was admitted and placed on the tele floor with a heart monitor. I was started on Methimazole "for my thyroid". I didn't think to ask any questions. A heart test was done a showed a normal EF (ejection fraction). I was discharged at 3 days. I went back home. I saw my pcp at home and he gave me additional meds to take including increasing lasix, coreg, blood pressure med. I am also diabetic but they stopped all my po diabetic meds in the hospital and now I just take insulin. My PCP said that the heart failure is not "congestive" as in CHF but my heart is beating to fast in one place only and fixing the thyroid will cure it. I went home and thought Ok I can fix this. He referred me to an Endo. My appt was 3 months away. So I saw him and he ordered a bunch of labs which I had done. 05/17/2011

TPOab= 220 (0-34)
FT4 = 4.2 (4.5-12.0)
FT4direct =0.67 (0.82-1.77)
TSH= 2.220 (0.450-4.500)
CK 209 (24-173)
T3uptake 23 (24-39)
Thyroglobulin, QN 2192.0 (0.5-55.0)
Antithyroglobulin ab <20 (0-40)
I remained on Methimazole 5mg three times a day and the other meds until June 8 the doc says I'm hypo and stopped the Methimazole and started Tyrosint 25mcg daily.... Labs for 06/16/2011 are...

CK 54 (24-173)
Sed Rate Westergren 63 (0-56)
FT3ED 12.1 (3.2-6.6)
TSH 0.006 (0.450-4.50)
FT4 2.73 (0.82-1.77)
Vit d 22.8 (32-100)

June 26, 2011 I am back in the ER.

TSH 0.004 (0.35-5.5)
FT3 6.7 (2.3-4.2) 
sed rate, westergren 27(0-20)

The Endo restarted methimazole and stopped the Tirosint. On 07/11/2011 I had labs done at the Endo office and this is what they were....

Labs done on 07/11/2011 were.....

CK 29 (24-173)
ANA neg (neg)
RA factor 16.2 (0.0-13.9)
Sed Rate Westergren 20 (0-56)
FT4 1.17 (0.82-1.77)
FT3 2.9 (2.0-4.4)
TSH 0.009 (.0450-4.500)
Vit D 28.8 (32-100)
I had a cough at this time and WBC was elevated so was placed on antibiotic. I was otherwise feeling better than I had in months!!! Until.....
August 10, 2011.....

Back to the ER with labs....

WBC still slightly elevated
CK 44 (35-230)
FT3 4.9 (2.3-4.2)
TSH 0.041 (0.35-5.5)

Oh I forgot to mention....I lost my job while all this was going on due to calling in to much. This Endo told me that I have autoimmune Graves Disease. WoW it took that long for someone to tell me!! I don't have the eye problems but have had blurred vision and have to wear reading glasses for close up since starting Methimazole (caused by the med or the disease?) I am now off of the lasix and blood pressure meds due to low bp. Just wondering...I have read that the antibodies remain even after surgery and may even attack something else if the thyroid is gone. My Endo disagrees. 
Obviously I don't know what to do but I am tired of all of this!
Thanks for listening!!!


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## Lovlkn (Dec 20, 2009)

DX's since 1996 without thyroid medication? I would sue.

Sorry to hear of your inept treatment from your doctors. It sounds like your endo may be inept as well with the way they are dosing you n and off anti thyroid then replacement meds.

Your last labs show you hyper, did they increase your methimazole? Going from and anti thyroid medication to a thyroid replacement and back again is very strange. Usually if you go hypo on a anti thyroid med such as methimazole you simply reduce your dosage or skip a few days of treatment before resuming.

This is the first time I have ever even heard of a replacement med called Tirosint - are you in the USA?



> I have read that the antibodies remain even after surgery and may even attack something else if the thyroid is gone. My Endo disagrees.


The antibodies do not attack anything else - I agree with your endo and 7years post op I do not feel anything else has been affected. If anything antibodies should be reduced greatly post TT although I still have enough antibodies to completely suppress TSH 7 years post op. This is why it is important to dose replacement by using FT-4 and FT-3 tests.

The issue is they must leave some thyroid tissue on the vocal cords which still produces some antibodies and as I understand the blood also can create some and some people have thyroid tissue in other areas of their bodies such as the chest cavity. Strange but true and no I do not have any studies to post but imagine you could find some if you did a search.


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## Andros (Aug 26, 2009)

mixer23 said:


> A little history.....Was diagnosed with hyperthyroidism in 1996. Had an uptake done that showed a "hot thryroid". The Endo at that time said that it was ok and not to worry because it will burn out. So no meds no nothing until this happens!!
> In Nov 2010, I'm out of town visiting my son and grandbabies. Later in the evening as everyone was getting ready for bed I started getting short of breath. It last for a little bit then stopped. I told my son about it then went to bed. Early the next morning I woke up short of breath again and woke up son and told him I couldn't breathe. He took me to the Er. I was diagnosed with heart failure!! That scared me to death!! I was admitted and placed on the tele floor with a heart monitor. I was started on Methimazole "for my thyroid". I didn't think to ask any questions. A heart test was done a showed a normal EF (ejection fraction). I was discharged at 3 days. I went back home. I saw my pcp at home and he gave me additional meds to take including increasing lasix, coreg, blood pressure med. I am also diabetic but they stopped all my po diabetic meds in the hospital and now I just take insulin. My PCP said that the heart failure is not "congestive" as in CHF but my heart is beating to fast in one place only and fixing the thyroid will cure it. I went home and thought Ok I can fix this. He referred me to an Endo. My appt was 3 months away. So I saw him and he ordered a bunch of labs which I had done. 05/17/2011
> 
> TPOab= 220 (0-34)
> ...


Boy, talk about mismanagement of a diagnosis and medical intervention. You are lucky to still be with us. No doubt you were having a thyroid storm not just on one occasion but on several.

Thyroid Storm
http://www.clivir.com/lessons/show/thyroid-storm-symptoms-causes-and-treatment.html

I have never seen the Thyroglobulin level (Not antibodies) as high as yours and I strongly urge that you request RAIU (radioactive uptake scan.)

The thyroglobulin test is primarily used as a tumor marker to evaluate the effectiveness of treatment for thyroid cancer and to monitor for recurrence. Not every thyroid cancer will produce thyroglobulin, but the most common types, papillary and follicular thyroid cancer, frequently do, resulting in increased levels of thyroglobulin in the blood. Thyroglobulin may be ordered, along with a TSH test, prior to thyroid cancer treatment to determine whether the cancer is producing thyroglobulin. If it is, then the test can be ordered at intervals after treatment to monitor for cancer recurrence. Several thyroglobulin levels may be ordered over a period of time (serial samples) to look at the change in concentration. The change often provides more information than a single value.

Whole article here: http://labtestsonline.org/understanding/analytes/thyroglobulin/tab/test

It is not uncommon for Graves' patients to have cancer.

Thyroid cancer in patients with hyperthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/12876418

In most cases, mine included, getting rid of the thyroid puts the patient on the healing pathway "provided" that patient is on a proper amount of thyroxine replacement which most of us are.

Keeping the TSH suppressed after removal of the thyroid keeps the antibodies very very quiet if not undetectable. Improvements in life-style help this also.

"If" you are going to definitely have your thyroid surgically removed, you could probably by-pass the RAIU because they will send the gland out to pathology.

I sure am sorry you have been so ill. Your story reminds me of my own. I went 20 years undiagnosed.


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## patient50313 (Aug 27, 2011)

Do you consume aspartame or any other artificial sweetner?

I had read that some doctors believe that aspartame is the cause of a lot of auto-immune diseases and neurological disorders. So, I thought I'd eliminate it from my diet to see if it would help me.

I was taking 30 mg of methimazole a day for my hyperthyroid and when I stopped consuming aspartame my symptoms improved DRAMATICALLY in just a manner of a few days and I could no longer tolerate my thyroid medicine, so I stopped taking it. I now take a dietary supplement called L-Carnitine which gives you the same results as methimazole without all the side affects. Once I started taking it my hair stopped falling out.

I would start there and you might be surprised you may not need any medication.

I continue to follow-up with my Endo Dr who recommends that I stay on the L-Carnitine since it's working to keep my levels in normal range. He says it's perfectly safe to take, so I've been taking 500 mg in the morning and 500 mg at bedtime.

Hope this works for you as well as it has for me. Good luck to you.


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## webster2 (May 19, 2011)

Mixer23, I am adding you to my prayer list, it is a wonder you are still with us. I hope someone will manage your care correctly soon.


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## AZgirl (Nov 11, 2010)

PLEASE READ,,, DIRECTLY FROM EILEEN MOORES WEBSITE......... IT IS TRUE ABOUT SURGERY DOES NOT REMOVE ALL ANTIBODIES
At one time, before Graves' disease was found to be an autoimmune disorder, aggressive therapy seemed like a wise option. However, today, now that the autoimmune nature of Graves' disease is well known, at least to most physicians, therapy, using anti-thyroid drugs (ATDs) is aimed at reducing TSI production and helping the immune system heal and recover.

Aggressive therapy using surgery removes some TSI because these antibodies are primarily stored in thyroid tissue. However, TSI levels can increase later if the immune system is still stimulated by environmental triggers to produce TSI.

On the other hand, when radioiodine is used to ablate or destroy the gland, the thyroid gland and immune system cells within the gland perceive this as a foreign attack. Consequently, TSI production dramatically rises. This evokes an increase in hyperthyroidism that persists until most of the thyroid tissue is destroyed. Radioiodine molecules stay within the body for a long time.

Even though RAI molecules have a short-half life, trillions of atoms are administered in the RAI dose. Studies show that these RAI molecules in patients receiving RAI ablation for GD can trigger airport radiation detectors for a minimum of 8 weeks. How long these molecules truly persist isn't known. However, it's known that TSI production persists, peaking within the year and remaining elevated for many years. And it's known that RAI causes a slight but significant increase in thyroid and small bowel cancer in mortality studies. Patients who develop cancer but do not die from it aren't included in these studies so the true long-term effects remain unknown.

Furthermore, as time passes, the immune system begins to produce more blocking than stimulating TSH receptor antibodies. These antibodies block both TSH and TSI from activating the lock on thyroid cells. At bout 6 years after radioiodine ablation, atrophic hypothyroidism develops, worsening conditions of radioiodine-induced hypothyroidism. And because both stimulating and blocking TSH receptor antibodies contribute to thyroid eye disease, eye and skin complications often occur at this time. In addition, the condition of thyroid acropachy, a form of elephantiasis, is known to occur up to 30-40 years after radioiodine ablation. Acropachy is a form of soft-tissue swelling primarily of the fingers and toes.

http://elaine-moore.com.dnnmax.com/...nTreatingGravesDisease/tabid/169/Default.aspx


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## AZgirl (Nov 11, 2010)

On my other message board, when people who have had surgery, most being ok too, but some not, ask why they are having a some symtoms of hyper.. or even if not, the head person always tell them to INSIST on their endo to do a TSI or Trab test. Its your right to know if all the antiodies are still attacking and just might be aware of


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## webster2 (May 19, 2011)

AZgirl said:


> PLEASE READ,,, DIRECTLY FROM EILEEN MOORES WEBSITE......... IT IS TRUE ABOUT SURGERY DOES NOT REMOVE ALL ANTIBODIES
> At one time, before Graves' disease was found to be an autoimmune disorder, aggressive therapy seemed like a wise option. However, today, now that the autoimmune nature of Graves' disease is well known, at least to most physicians, therapy, using anti-thyroid drugs (ATDs) is aimed at reducing TSI production and helping the immune system heal and recover.
> 
> Aggressive therapy using surgery removes some TSI because these antibodies are primarily stored in thyroid tissue. However, TSI levels can increase later if the immune system is still stimulated by environmental triggers to produce TSI.
> ...


I am not sure I understood this correctly, if one has surgery TSI can still be produced and prevent the immune system from healing?


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## Andros (Aug 26, 2009)

webster2 said:


> I am not sure I understood this correctly, if one has surgery TSI can still be produced and prevent the immune system from healing?


Removing the receptor site (Epithelial Cells on the surface of the thyroid gland) usually causes TSI to drop dramatically and keeping the TSH suppressed in the aftermath of ablation usually keeps TSI suppressed.

Nothing is carved in stone but I believe your chances for a full and wonderfully remarkable recovery are 99.9%.

TSI targets the TSH receptor site.


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## webster2 (May 19, 2011)

Andros said:


> Removing the receptor site (Epithelial Cells on the surface of the thyroid gland) usually causes TSI to drop dramatically and keeping the TSH suppressed in the aftermath of ablation usually keeps TSI suppressed.
> 
> Nothing is carved in stone but I believe your chances for a full and wonderfully remarkable recovery are 99.9%.
> 
> TSI targets the TSH receptor site.


That is music to my ears! My immune system has been shot for so long. You just made my day!:hugs:


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## Andros (Aug 26, 2009)

webster2 said:


> That is music to my ears! My immune system has been shot for so long. You just made my day!:hugs:


Shall I quit playing my violin now? ROLF!


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## webster2 (May 19, 2011)

LOL, keep the music coming!


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## AZgirl (Nov 11, 2010)

Please understand, im not saying surgery is a bad choice. But it has been proven that you could still have TSI antibodies after surgery or RAI... The only way to really know that is you request a TSI or Trab lab get done. Im sorry and dont want to sound argumentive, but her is another read about someone having issues after TT, once again, not sayin this is to be true for everyone, but yes, its out there.

TRab are the antibodies that cause Graves disease and hyperthyroid, but thyroid is just ONE place they cause trouble.

The higher the TRab antibodies, the greater chance you have of experiencing severe skin disease or eye disease (TED). High TRab can even set off seizures (Graves encephalopathy) since TRab can sometimes reach the brain tissues too. *There are many receptors for TRab within the body - not just on the thyroid. Bone, muscle, other glands - many more.*They call Graves a thyroid disease, but that is not exactly true. It's actually an immune system problem that creates systemic disease. The thyroid is just the one that we notice the most. Therefore, the focus on treatment should be on the IMMUNE system -- using a treatment that lowers those TRab antibodies, so you can be free of the disease itself. (This is why I don't advocate RAI be used at all, and suggest surgery as second choice, even though that too can elevate TRab).

This article below shows a patient who underwent a thyroidectomy and his TRab antibodies suddenly shot up 15 times normal. He then began suffering from lesions on both shins. They feel this surge in antibodies was caused by damaging the thyroid cells, which released antigens and caused these antibody flareups. "Acute development of pretibial myxedema following radioiodine treatment for thyrotoxic Graves' disease has been associated with very high TRAb titres post-radioiodine (RAI).2 Similarly, very high TRAb activity in response to thyroid antigens released during surgery may have caused the postoperative flareup of the dermopathy in our patient."

But Antithyroid medications REDUCE TRab antibodies. It takes some time, but if you stay on a good therapy and maintain good thyroid levels, your TRab should slowly come down. 
There are photos on the link below:

http://journal.nzma.org.nz/journal/121-1283/3294/

Acute pretibial myxoedema following thyroidectomy for Graves' disease
Akheel A Syed, Nigel A G Jones, Petros Perros


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## MrGraves (Nov 6, 2009)

Sorry for your troubles, will keep u in my prayers tonight! 
God Bless!!
Mr.Graves


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