# DX of Grave's Suggested in 2004 after Uptake - Never knew



## gkygrl (Jun 16, 2007)

Just wondering if I could get a little guidance. Thank you in advance!

In 2004 on an MRI for MS (I have that too) I was found to have a nodular thyroid. They followed up with CT and that moved to Thyroid uptake.

*2004*

Imaging at six hours following tracer administration demonstrates
homogeneous uptake in the thyroid. There are no hot or cold
nodules seen. The right lobe is slightly more prominent than the
left lobe.

Quantitative uptake analysis shows the following levels:
At 2 hours, there was 15.4% uptake (normal: 5-12%).
At 6 hours, there was 25% uptake (normal: 4-40%).
At 24 hours, there was 44% uptake (normal: 10-35%).

Impression:
1. Increased thyroid uptake function. This is compatible with
thyrotoxicosis.

2. No evidence for hot or cold nodules. The gland demonstrates
homogeneous function. *This suggests diagnosis of Graves disease.*

Code: ABNORMALITY-ATTN.NEEDED

Fast forward to 2008 and my thyroid was so nodular I had a complete thyroidectomy (they mentioned that there was very little thyroid and it was mostly septated cysts. Yuck). The thyroid was grown very large and was lodging under my collar bone and pressing on my windpipe. Since my thyroidectomy, I have been on various doses of Synthroid and thought I was dealing with Hashimoto's ... not Graves. No one ever really told me about Graves ... I read about it in my testing.

Over the past couple of years, I have struggled to regulate my TSH. I had been on .137 mcg for years. But I started losing hair, getting puffy and sore joints and some of the other stuff. I was found to have a TSH of 15.6 in June 2017. This was about the time I had an MS relapse (optic neuritis) that put me in the hospital for 3 days on IV solumedrol. Pretty standard in the world of MS. My eyes have always been my nemesis with MS with recurrent bouts of optic neuritis. I also have Keratoconus (thinning corneas). My blood work since June 2017 has slowly gotten back to normal but I actually went hyperthyroid recently and it landed me in the ER by ambulance - Oct 27. Almost like a thyroid storm I guess (not sure if that is possible without a thyroid) - I was transported by ambulance with tachycardia - I was up to 187 bpm and high blood pressure 186 / 111 and flushing. Needless to say, I felt pretty crappy and nauseous. In the ER, they found I was hyperthyroid and had a UTI (I self-catheterize with MS so not that uncommon for me).

*My TSH in the ER on 10/27 - THYROID STIMULATING HORMONE 0.19 uIU/ML L - Low (DX with Thyrotoxicosis without storm in the hospital ER - they got Fluids in me and some meds via IV - also DX with UTI)*

That was all he ran but told me to get plugged in with an endocrinologist ASAP and stop my synthroid for a coupld of days until I could get a lower dose. I finally got the referral and will be going to see a large endocrine group who specializes in just thyroid and parathyroid. Getting into them was not easy but I finally got in. Since the ER, they have lowered my Synthroid from .175 mcg to .155 mcg and it has been about two weeks but the blood pressure and heart rates are normalizing. Still have anxiety though and agitation, tremor, diarrhea and insomnia. I tend to blame MS on a lot but I think this is definitely thyroid.

Since 2008 or so, I thought I had Hashimoto's - yet that test suggests "Grave's Disease" (done through the VA - I'm a disabled vet). Any reason why docs would choose not to share this with me? My thyroid was very very cystic and was removed. I guess they just wanted to manage that TSH. Unfortunately, my endocrinologist had left the VA in 2009 and I have not seen a real endo since.

Another piece of the story is that in the space of 3 months, my TSH jumped from 3.X to almost 16!!?? Nothing changed in the way I took synthroid. What could have caused such a jump so rapidly. This to me was the most concerning things. It seems I am sensitive to big swings. Not sure why and I guess that is why I'm posting.

Is it possible to have both autoimmune antibodies - Graves and Hashis??? I have other autoimmune diseases - MS, allergies, Asthma, psoriasis, I am service connected for MS and asthma (Army takes responsibility for the diseases and compensates me). I was exposed to a LOT of toxins in basic training - thyroid disease in the civilian population where I was stations was rampant. I guess I got it too.

I have a kind of strange clinical picture that makes it tough to isolate. Any way to approach my appt? I am bringing tests and have faxed bloodwork. *Can Grave's still affect after complete thyroidectomy?* Why such huge fluctuations with TSH? I've posted on the board before - suspecting I was hypo. Now it is the opposite.


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## Lovlkn (Dec 20, 2009)

Have you had your thyroid removed?

When is the last time you have had TPO and TSI antibodies run and what are the results with ranges?


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## gkygrl (Jun 16, 2007)

I had a complete thyroidectomy in 2008. Never heard the term hashitoxicosis - only thyrotoxicosis recently. it just reached a super symptomatic level effecting heart and BP that I had to call 911 on 10/27. Horrible feeling.

The bouncing around of TSH number is what has me confused - especially over the past year.

I'm FINALLY getting back in with an endocrinologist - have not seen once since 2009 and feel out of sorts

----

Found these tests in old records from 2007. I do not think I ever had this done again:

I I found these in my records from 2007. Not sure what they mean - will need to research

*ZZANTI-THYROGLOBULIN*
(V2<11/16/07)
59 *

*ZZTHYROID PEROXIDASE
AB* (V2<11/16/07)
24 *

*ref. rangeTPO)=0-34 IU/mL
Antithyroglobulin AB=0-40 IU/mL*

So, add the increased RAIU from 2004 and what is the real dx. Looks like Graves to me? Maybe I carry antibodies for both?


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## gkygrl (Jun 16, 2007)

Just trying to figure it out


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## Lovlkn (Dec 20, 2009)

> I had a complete thyroidectomy in 2008.


Your issue sounds more like "over medication" - diet and supplements can effect the absorption of your med's.

I have not had 1 antibody test post TT. They never mention it and I understand it's not really needed.


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## gkygrl (Jun 16, 2007)

It was total. Here's the journey on Video. 2008,






My TSH went up to 44! That sucked. You can see it on video.

Back to the ups and downs. There must be something else at play.


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## Lovlkn (Dec 20, 2009)

Can you please share the lab results from June?

Does your doctor ever test anything more than TSH?

Free T-4 and Free T-3 will reveal the free and unbound thyroid hormone in your system.

How often do you have thyroid lab's drawn?

Posting some lab history with ranges would be helpful to sort out what's happening with you.


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## gkygrl (Jun 16, 2007)

Lovlkn said:


> Can you please share the lab results from June?
> 
> Does your doctor ever test anything more than TSH?
> 
> ...


Recently I have had a lot of labs drawn because I was losing hair and knew I was hypo. I think being hypo contributed to an MS relapse I had too that put me in the hospital back in June. Definitely over medicated at .175 mcg and am on .155 mcg -I am wondering why I am having these swings. Nothing has really changed for me. I changed from TSH (that's all I have)

Tests below will go from Oct to June

From the ER 10/27

Test Result Standard range Status Remarks
THYROID STIMULATING
HORMONE
*0.19 uIU/ML L  Low *

10/6/27

Test Name FREE T4 (REFLEX)
Result 1.36
Units ng/dL
Reference Range 0.58-1.64

Test Details Details
Test Name TSH SCREEN
Result 0.48
Units uIU/mL
Reference Range 0.46-3.59

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2 Aug 17

FREE T4 (REFLEX) 1.31 ng/dL (0.58-1.64)

TSH SCREEN 3.72 High uIU/mL (0.46-3.59)

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12 June 17

FREE T4 (REFLEX) *0.94 *ng/dL (0.58-1.64)

TSH SCREEN *15.46* High uIU/mL (0.46-3.59)

--------

28 Feb 17

TSH ULTRASENSITIVE
TSH 2.647 uIU/mL ORL 0.550-4.780
Free T3 2.9 pg/mL 2.3-4.2 ORL
FREE T4 (THYROXINE)
Free T4 1.66 ng/dL 0.89-1.76 ORL

----

The jump from February to June was big for me. I've been dealing with this since 2004 but this is up and down. The hyper thing is really giving me cardiac symptoms .... but I think they are calming down a bit. I am finally going to get back into an endo. I'm just really sensitive to the changes in TSH I think. Maybe something going on in the pituitary or MS affecting it.

THANKS FOR YOUR HELP!!! ;-)


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## Lovlkn (Dec 20, 2009)

> From the ER 10/27
> 
> Test Result Standard range Status Remarks
> THYROID STIMULATING
> ...


With your lab results - specifically your FT-4, it is odd that you are having such fluctuation in your TSH. Since TSH is a pituitary hormone - consider looking for a possible pituitary dysfunction.


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## gkygrl (Jun 16, 2007)

Thanks Lovlkn for adding your comments - I just saw them.

I think it's odd too ... and it was kind of sudden. I do have a brain disease - MS. I will definitely have them look in that direction. Those intense hyper symptoms were scary. One of my MS medications (Copaxone) in August caused a weird allergic/anaphalactic reaction - I am no longer on it. And awoken in the middle of a night with smashing headache and very high blood pressure and heart rate. Somethings kicking things into high gear and low gear really quickly. My heart rate will jump to 155 and then down to 60 in seconds. Feels like I am on a roller coaster and can't catch my breath.

Something isn't working right. Need to get to the bottom of it.


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## Lovlkn (Dec 20, 2009)

It's odd for someone to have such dramatic TSH swings post TT for sure.

I found this doing a Google search... Since you are on other medications for your MS, had anything changed recently in medication or dosage? DO any of your medications for MS contain the following?



> Several substances are known to interfere with intestinal absorption of L-T4, such as cholestyramine, aluminum hydroxide, calcium carbonate, ferrous sulfate, and sucralfate. Other substances can increase the hepatic metabolism of L-T4 (e.g. carbamazepine, phenytoin, and phenobarbital),16 whereas estrogens such as oral contraceptives can increase TH requirements by increasing serum levels of T4-binding globulin.17


When you take your T4 hormone are you consistent in time and food avoidance or supplement avoidance of iron and calcium? Are all of your lab;s drawn at the same time prior to ingestion of any thyroid hormone replacement?

Have you ever done a 4 point saliva adrenal gland testing? Adrenals can cause what you describe and your body sounds like it's under stress with the MS.

Other items to consider - Pituitary or hypothalamus issues such as a cyst or tumor which are causing erratic TSH results.

My understanding is that as long as the FT-4 and FT-3 are within the 1/2-3/4 of range you should not be symptomatic regardless of your TSH results as Free hormones are what is metabolically available.


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## gkygrl (Jun 16, 2007)

Lovlkn said:


> It's odd for someone to have such dramatic TSH swings post TT for sure.
> 
> *I was fine up until about 1-2 years ago - big swings and feeling yucky. Things were managed pretty consistently up to that point. Nothing for me changed in the way of medications or menopause (went through full menopause in 2008 after my last ovary was removed. Everything for me started in 2004 with nodules found on thyroid when they were doing a brain and spine MRI which was routine for my MS. no hot or cold nodules on RAIU .... but increased absorption pointing to suspected graves disease. My thyroid became so cystic and nodular (they thought is was cancerous) and was pressing on my windpipe that they had to remove it all. There was nothing left of it ... it was destroying itself. *
> 
> ...


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## gkygrl (Jun 16, 2007)

Another thing I noted about my history, is that I was on the dose of .175 mcg of Synthroid for years. I must have gone hyper or something and was moved down all the way to .137. mcgs. Recently, up to .155 and then .175 and boy have I had issues! Why would .175 be such an issue now if I was on it for years? Could it be extra TSH coming from something else like the pituitary? Maybe it is more complex than that. Body has changed too ... same weight (which is more than I want - 200 lbs, 5'9") but my body shape is totally different. Bigger around the middle - kind of Cushing's-like which apparently comes from too much ACTH - Cortisol. I was on a BIG round of high dose IV steroids in June for MS relapse and then a two week taper. Maybe the "corticosteriods" affected my adrenals or something? That doesn't explain the swing that happened from Feb-June?

Just playing sleuth here.


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## joplin1975 (Jul 21, 2011)

While it would be odd, you might want to consider having another RAIU.

Thyroid surgery always leaves small bits and pieces of the thyroid behind. It's possible (although, again, it'd be strange) that a small piece grew back and is now kicking out antibodies and causing your swings.


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## gkygrl (Jun 16, 2007)

joplin1975 said:


> While it would be odd, you might want to consider having another RAIU.
> 
> Thyroid surgery always leaves small bits and pieces of the thyroid behind. It's possible (although, again, it'd be strange) that a small piece grew back and is now kicking out antibodies and causing your swings.


Anything is definitely possible with me - I never rule out anything. They may at very least, start out with an ultrasound. Will keep you posted. I am on a cancellation list but appt is 11/30 if not beforehand. I'm at the top of the cancellation list. We shall see.


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## Lovlkn (Dec 20, 2009)

> Why would .175 be such an issue now if I was on it for years?


As we age we need less thyroid hormone - or so they say.

What I have noticed 13 years post TT - I am now 13 years older, 10 lbs heavier, post menopausal and taking the same dose of thyroid hormones, although I changed from brand Cytomel to generic lilothyronine and needed a very slight reduction to not be too high on my FT-3. The change to generic has contributed to my weight gain which is odd because my thyroid lab results are almost exact to being on brand.



> Maybe the "corticosteriods" affected my adrenals or something?


Absolutely - could also explain your weight gain,


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## gkygrl (Jun 16, 2007)

YOU are DOCTOR HOUSE Lovlkn hugs3 ... thanks for giving me some good angles to explore. Most primary docs (especially VA primary care docs) think an RX of synthroid and a yearly TSH check is enough. When I lost contact with my endocrinologist in 2009 or 2010 (he no longer wanted to work at the VA - too many hoops) I lost the care I was receiving that involved much more blood testing and a keen eye. Now I'm hitting up a non-VA practice and should get the kind of help and testing I need. arty0045: LOL - love the banana, had to post the banana


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