# Graves and prednisone interaction



## thumper54 (Sep 2, 2013)

Does anyone know how prednisone affects the TSI levels in Graves?

I finally got my very first TSI level results back and it read 100 with a range of 0-122. The doctor knew I was still taking prednisone, but said that it wouldn't make a big difference. I have been hyper for four months now and on PTU.

I don't know if my eye troubles are thyroid related or not because I was taking prednisone at the time of that visit too, but I really struggle with dry eyes and they got bad before the prednisone. My prescription changed, but she said it wasn't in the usual way, but didn't elaborate. So what do you think? Is this Graves or just hyper?


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## Ginav (Jun 7, 2013)

I don't know what your history is and the magnitide of issues with the eyes but I started to have extremely dry and tired eyes and on another site there was a suggestion to try 1000mg of Flaxseed Oil 2 times daily. I started a week ago and it has worked for me! I was told by my Opthamologist that the eye condition changes over time, it doesn't stop or just go away. That surprised me as I was told it clears up over time! He suggested I have a laser treatment to remove the pressure from my eyes as it builds up when GED gets worse and can cause I believe what he said "Critical Glaucoma" not sure if that was the exact term he used or not but it can cause blindness. I'm assuming you go to an Opthamologist not an Optometrist? Gina


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## Andros (Aug 26, 2009)

thumper54 said:


> Does anyone know how prednisone affects the TSI levels in Graves?
> 
> I finally got my very first TSI level results back and it read 100 with a range of 0-122. The doctor knew I was still taking prednisone, but said that it wouldn't make a big difference. I have been hyper for four months now and on PTU.
> 
> I don't know if my eye troubles are thyroid related or not because I was taking prednisone at the time of that visit too, but I really struggle with dry eyes and they got bad before the prednisone. My prescription changed, but she said it wasn't in the usual way, but didn't elaborate. So what do you think? Is this Graves or just hyper?


Gina; did you go to a Board Certified Ophthalmologist? If not, it would be highly recommended. And yes; Prednisone tamps everything down. Thank goodness. It's not to be over used as you well know but it has saved many a disaster. That is for sure.

Thus, both C and P markedly lower the TSI titers of patients etc.. Read here: http://www.ncbi.nlm.nih.gov/pubmed/2573120

P (prednisone)

http://www.ncbi.nlm.nih.gov/pubmed/1974269


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## thumper54 (Sep 2, 2013)

Thank you for the responses and references. If I understand the terminology correctly, would I be correct in saying that I have Graves disease?


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## Andros (Aug 26, 2009)

thumper54 said:


> Thank you for the responses and references. If I understand the terminology correctly, would I be correct in saying that I have Graves disease?


There is "certain" criteria for Graves' and I hope you don't have it. There is such a thing as just being hyper but w/TSI, Graves' is always suspected.

This may help explain it all.............

The criteria for Graves' is clinical. You must exhibit..........goiter, exophthalmos, pretibial myxedema and thyrotoxicosis as per Dr. Robert Graves' of the 1800 era. 3 out of the 4 qualify.
(3 chapters) http://www.thyroidmanager.org/chapter/graves-disease-and-the-manifestations-of-thyrotoxicosis/

http://www.thyroidmanager.org/chapter/diagnosis-and-treatment-of-graves-disease/

Otherwise you are classified as hyperthyroid either because of Hashi's, the criteria for that being high TPO Ab and a grapelike appearance of the thyroid, both of which are "suggestive" because this is commonly seen in Hashi's with FNA (fine needle aspiration) confirming those suspicions "if" there are Hurthle Cells indigenous to Hashimoto's. Or because of cancer. We don't know which comes first, the hyperthyroid or the cancer. We just know that they are often found together.

And you are more than welcome; seriously!!!


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## thumper54 (Sep 2, 2013)

It's not that I want to have Graves, but I'm just frustrated that NOTHING is adding up normally. I have a cold, solid, ill defined, fast growing 3.4 cm nodule on one side only (that I was told was a UNILATERAL viral thyroiditis, than Hashimoto's thyroiditis, then just thyroiditis) that now I'm told IS a nodule, not thyroiditis. My nuclear scan was 3% on one side and none on the cold side. My TPO has never been above 49 and now the TSI is at 100. While I began this episode with hyper symptoms that I'm now taking PTU for, I have been hypo feeling and hyper feeling at different times in my life before, but my TSH has never been above 3.87 or less than 2.13 and until recently I didn't know enough to ask for anything else, so who knows what was going on. I have been so exhausted I've been in a wheelchair and couldn't even walk 20 feet (I was 38) and other times they thought I was bipolar because I had so much energy. I am now 59 and I have spent the last few years trying to eat clean and I have really improved my health and thought I was finally on top of whatever is going on until last year at this time when I was waylaid by a kidney infection. I found a Dec 2012 TSH test of 1.88 (the lowest I've ever tested) taken in the ER and by April it was 2.86 (0.42-4.2),FT4 1.1 (0.7-1.7) and FT3 2.6 (2.3-4.2). In Aug it was TSH 0.02 with FT4 of 1.9 (same ranges as before) and in Oct it was TSH undetectable with FT4 of 3.4 (same ranges). I was taking Naturethroid up to three weeks before the nuclear scan so those results are not a true picture and I was taking prednisone when the TPO and TSI were run so those also are not a true picture. How much the Naturethroid and the prednisone affected the tests, no one seems to know. Both of my FNA's have come back with too few cells. It's only been about 4 1/2 months since the swelling, trouble swallowing, hoarseness, ear pain, hyper feeling got bad, but it feels like forever. I've seen two endos and two ENTs and have been virtually dismissed except for the last endo who just sent me a note with antibody results saying it doesn't look like Hashi's or Graves. And that's the biggest trouble - it doesn't look like anything conclusive and I really don't deal well with the unknown...... I have scoured the internet for some clue, but I can't find an answer either. So I have no idea how long the hyper will last, whether the PTU is the right treatment, what triggered this, or whether I can expect to go hypo, etc. (I must be pretty hyper right now as the anxiety about all of this is getting to me again just as it did when it first began). I apologize for the frustrating tone and the rant, but I'm glad you're here and can empathize.


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## joplin1975 (Jul 21, 2011)

Thumper, I don't know if this helps but...

My TSI was 129%. My TPO was in the 700s. I had cold nodules with no uptake on the left side, very low uptake on the right side.

It was cancer. The way it was explained to me, in lay terms, was that the TSI was more or less a "reaction" to the cancer. As the healthy thyroid cells were destroyed, the body tried to stimulate activity with TSI. I was mostly hypo, but did have hyper or hyper- like spells.


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## thumper54 (Sep 2, 2013)

Thanks Joplin. Did you have a FNA?


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## joplin1975 (Jul 21, 2011)

Yes and it was conclusive for papillary thyroid cancer.


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## thumper54 (Sep 2, 2013)

Did you have just one nodule and how large was it (them)? I have one large solitary on the right, but two small ones on the left side. They've tried to do the FNA with ultrasound guidance twice on the large nodule, but can't seem to get anything, but a few follicular cells and scant colloid - not enough to diagnose....


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## joplin1975 (Jul 21, 2011)

No, I had multiple nodules...3.2cm, 2.5cm, and 2.something on the left side (all solid); three small <1cm nodules on the right.


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## thumper54 (Sep 2, 2013)

Wow, that sounds uncomfortable! It really amazes me how much tissue can fit into a small area in our neck..... I'm assuming that you only had the FNA one time? I can't figure out why they can find tissue in some nodules and not in others even if they are the same size. (You largest and mine are similar in size). Did you have symptoms or had you been "watching" yours for any length of time? With your antibodies so high in both TPO and TSi were you diagnosed with hashtoxicosis or Graves?


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## joplin1975 (Jul 21, 2011)

Yes, I only had the FNA once.  I didn't realize I had thyroid issues...I thought it was just how it felt to get older. It wasn't until I went to my OB/GYN for an annual appointment that I had any idea about thyroid issues. She was in the room for about 30 seconds and asked how long my neck had "looked like that." So shortly after that, I had the FNA and was dx'ed with PTC. The path report said there was evidence of chronic thyroiditis, but by then we were focused on the cancer and not the auto-immune stuff.


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## thumper54 (Sep 2, 2013)

I'm glad it was not a long drawn out process for you. And I'm glad that you are on top of things now. You're in a good position to help many others. Nothing like experience to teach us. Thanks for all your help. Too bad you aren't my doctor....LOL By the way, once the thyroid is out, do the antibodies cause you any problems? (I think they are supposed to be only for the thyroid, but since they also show up in small amts in other problems, I wasn't sure how that might work, ie Sjorgren's or RF).


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## joplin1975 (Jul 21, 2011)

I don't have (that I know of, anyway) any other autoimmune issues other than allergies. Without a doubt, removing the thyroid has helped me feel "stable" - no more wild ups and downs (one day I'd go out and run 10 miles and still feel anxious, jittery or hyped up and the next day I could barely walk a mile), no joint pain, no more digestive issues, etc. And, my allergies are much less severe. In short, my quality of life has greatly improved.


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## Andros (Aug 26, 2009)

thumper54 said:


> It's not that I want to have Graves, but I'm just frustrated that NOTHING is adding up normally. I have a cold, solid, ill defined, fast growing 3.4 cm nodule on one side only (that I was told was a UNILATERAL viral thyroiditis, than Hashimoto's thyroiditis, then just thyroiditis) that now I'm told IS a nodule, not thyroiditis. My nuclear scan was 3% on one side and none on the cold side. My TPO has never been above 49 and now the TSI is at 100. While I began this episode with hyper symptoms that I'm now taking PTU for, I have been hypo feeling and hyper feeling at different times in my life before, but my TSH has never been above 3.87 or less than 2.13 and until recently I didn't know enough to ask for anything else, so who knows what was going on. I have been so exhausted I've been in a wheelchair and couldn't even walk 20 feet (I was 38) and other times they thought I was bipolar because I had so much energy. I am now 59 and I have spent the last few years trying to eat clean and I have really improved my health and thought I was finally on top of whatever is going on until last year at this time when I was waylaid by a kidney infection. I found a Dec 2012 TSH test of 1.88 (the lowest I've ever tested) taken in the ER and by April it was 2.86 (0.42-4.2),FT4 1.1 (0.7-1.7) and FT3 2.6 (2.3-4.2). In Aug it was TSH 0.02 with FT4 of 1.9 (same ranges as before) and in Oct it was TSH undetectable with FT4 of 3.4 (same ranges). I was taking Naturethroid up to three weeks before the nuclear scan so those results are not a true picture and I was taking prednisone when the TPO and TSI were run so those also are not a true picture. How much the Naturethroid and the prednisone affected the tests, no one seems to know. Both of my FNA's have come back with too few cells. It's only been about 4 1/2 months since the swelling, trouble swallowing, hoarseness, ear pain, hyper feeling got bad, but it feels like forever. I've seen two endos and two ENTs and have been virtually dismissed except for the last endo who just sent me a note with antibody results saying it doesn't look like Hashi's or Graves. And that's the biggest trouble - it doesn't look like anything conclusive and I really don't deal well with the unknown...... I have scoured the internet for some clue, but I can't find an answer either. So I have no idea how long the hyper will last, whether the PTU is the right treatment, what triggered this, or whether I can expect to go hypo, etc. (I must be pretty hyper right now as the anxiety about all of this is getting to me again just as it did when it first began). I apologize for the frustrating tone and the rant, but I'm glad you're here and can empathize.


 Cancer can and does cause hyperthyroid. I am very very worried and it is my humble opinion that your thyroid needs to come O - U - T!!!

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

Please; no apology needed. Many of us have been where you are right now. If nothing else; we understand.

Regarding your doctors; if I were in your shoes, I would start screaming cancer. If you have been misdiagnosed or fluffed off; a lawsuit may be on the horizon.

Meanwhile, I am sure it has cost you thousands of dollars so far.


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## thumper54 (Sep 2, 2013)

Thanks Andros. Interestingly I had just printed this study out this morning. Would this be a good time to get a thyroglobulin test? Would it be valuable for anything besides a base level? Thank you.


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## thumper54 (Sep 2, 2013)

I was on another (graves) site and asked the same question about the prednisone and TSI level interaction. This was the answer I got:

"A level of 122% is the level at which most people with Graves' disease develop hyperthyroidism. Normally, the level is <2%. A level of 100% suggests that you have Graves' disease and that your levels are falling from the time you were first diagnosed. Without meds, your TSI would rise and move you back into a hyperthyroid state. With treatment, over time, your TSI will continue to fall. Best, Elaine"

Another site was helpful in explaining that "antibody and thyroid levels rapidly drop once antithyroid drugs are started."

I hope this info helps someone else too.


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