# Digestion and Graves!



## LindaKN

Hello! I'm new to the forum and decided that I really need to seek some advice from those that have been living with Graves. A very quick little history of my experience - I became quite ill about 19 months ago and after many, many months was diagnosed with Graves. I took Tapazole for approximately 8 months - and really didn't enjoy the experience  I think the shock to my system was too much and I really, really, really slowed down, gained weight (30 lbs!), had severe gastro problems and had zero energy.

I'm 34 with two teenage kids at home. The slowing down effect really compromised my ability to lead an active life.

I have been off of the Tapazole since the summer and my levels are ok. However - I still have problems with the gastro side of things.... My endo told me that it must be "something else" and to go see a family doctor instead.

SO - my question is: In your experience, have you had long term problems with your digestive system either because of the Graves or because of medication? And if so, any advice??? 

Latest lab results
TSH	1.1	ref ranges 0.3-5.6
FT3	3.5	ref ranges 3.8-6.0
FT4	11.9	ref ranges 9.1-23.8


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## lavender

I had constant diarrhea and stomach pains with Graves, even on the anti-thyroid meds. They improved greatly after my surgery. Taking Tapazole long term was not a solution I could live with.


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## Andros

LindaKN said:


> Hello! I'm new to the forum and decided that I really need to seek some advice from those that have been living with Graves. A very quick little history of my experience - I became quite ill about 19 months ago and after many, many months was diagnosed with Graves. I took Tapazole for approximately 8 months - and really didn't enjoy the experience  I think the shock to my system was too much and I really, really, really slowed down, gained weight (30 lbs!), had severe gastro problems and had zero energy.
> 
> I'm 34 with two teenage kids at home. The slowing down effect really compromised my ability to lead an active life.
> 
> I have been off of the Tapazole since the summer and my levels are ok. However - I still have problems with the gastro side of things.... My endo told me that it must be "something else" and to go see a family doctor instead.
> 
> SO - my question is: In your experience, have you had long term problems with your digestive system either because of the Graves or because of medication? And if so, any advice???
> 
> Latest lab results
> TSH	1.1	ref ranges 0.3-5.6
> FT3	3.5	ref ranges 3.8-6.0
> FT4	11.9	ref ranges 9.1-23.8


Hi there Linda!! Welcome!

Your labs look hypothyroid to me. Mid-range for FT4 is a little less than 16.5 and mid-range for the FT3 is 4.9. Both of these should be above mid-range for most of us to feel well.

It would seem your doctor is treating you by TSH alone and this is huge mistake because the binding and blocking antibodies skew the TSH at the receptor site and they do not always fall in to the place they are expected to be.

I am wondering if you have had any antibodies' tests? And also, do you have the triad for Grave's (3 out of 4) which would be......

Goiter, exophthalmos, pretibial myxedema, thyrotoxicosis.

These are suggested antibodies' tests. Have you had any of these?

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

Have you had the RAIU (radioactive uptake scan??)

And to answer your question, yes!! Like most Graves' patients I flipped back and forth between hypo and hyper for years. Hypo was the worst in regards to slow intestinal motility. Very very bad. I know what you are going through.

The solution of course, is to bring those numbers into range.


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## LindaKN

Argh - lost my post. I'll try again 

Thanks so much for the quick replies!

Andros, I think you are right that my endo is only looking at TSH. She said that she wanted to see it higher, but never mentioned anything about my FT3/FT4 ranges. I never really thought about the mid-range, interesting feedback and food for thought!

As for the antibodies - I asked about that too and forgot that I had been tested last year. My tests were negative, but I'm daft and forgot to ask "what" test was performed....

As for the 3 out of 4: I have a small goiter on one side of my thyroid and have had a swollen nymph node on the same side ever since I became sick. I guess I had thyrotoxicosis (?) - my levels were much different when I was first diagnosed. No real eye problems or pretibial myxedema.

My biggest quest through all of this is to find out WHY I am sick. Is it really Graves? Is it something else? My endo is pretty cut and dry = You have Graves - If you're not feeling well stop complaining take the RAI (in so many words or less) - Don't believe everything you read on the internet.

I had an ultrasound but have never had the RAIU scan. There is a family history of FM and a new diagnosis of Lupus in my family. I've always wondered if there is more to the story that I haven't quite figured out!!

As a comparison here are my first lab results before Tapazole, etc, etc.:

May 2009
TSH >0.01 ref ranges 0.3-5.6
FT3 8.9 ref ranges 3.8-6.0
FT4 21 ref ranges 9.1-23.8


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## lavender

I does not look to me like you had thyrotoxicosis according to your labs. When I was, FT3 and FT4 were 4-5x the normal upper limit and I had to be hospitalized for 2 days due to the risk to my heart. TSH could be low for reasons other than Graves like a pituitary problem so I would think it is best to have all the tests done to confirm a diagnosis. Even after my hospitalization, and everyone in the hospital telling me I was a classic case of Graves, my endo would not confirm a diagnosis until I had RAIU and all the bloodwork, and even then he was careful to say it was "most likely Graves."

http://www.nlm.nih.gov/medlineplus/ency/article/000400.htm

"Thyroid storm is a life-threatening condition that develops in cases of untreated thyrotoxicosis (hyperthyroidism).

Causes
Thyroid storm results from untreated hyperthyroidism. It is usually brought on by a stress such as trauma or infection.

Symptoms are severe and may include:
* Agitation
* Change in alertness (consciousness)
* Confusion
* Diarrhea
* Fever
* Pounding heart (tachycardia)
* Restlessness
* Shaking
* Sweating

Exams and Tests
* The top number in a blood pressure reading may be high
* Increased heart rate

Blood tests are done to evaluate thyroid function.
Possible Complications

Congestive heart failure and pulmonary edema can develop rapidly and lead to death.


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## LindaKN

Ah! Thanks Lavender! I never really understood what thyrotoxicosis really meant and thought that a thyroid storm was something else... I have had all of those symptoms - but definitely not severe enough to warrant a hospital visit or put me in any real danger. Sounds like I would actually know if it happened to me!!

I've asked my endo many times "is it Graves? are you sure?" and she keeps telling me that yes, you've had an auto-immune response and there's no other reason but Graves....

What sorts of tests can I request for pituitary problems? After so long and still not feeling better, I think it's time to request a new endo or find someone else that can help me through this.


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## GD Women

LindaKN,

May 2009
TSH >0.01 ref ranges 0.3-5.6
FT3 8.9 ref ranges 3.8-6.0
FT4 21 ref ranges 9.1-23.8

Definitely Graves'!

<<<>>>

Latest lab results
TSH 1.1 ref ranges 0.3-5.6
FT3 3.5 ref ranges 3.8-6.0
FT4 11.9 ref ranges 9.1-23.8

The FTs are not in relationship to pituitary function. However they might suggest adrenal fatigue, cushings Syndrome, prescription drugs, allergies, hormonal imbalance, yeast, etc.

Would suggest doing a repeat test 6 to 8 weeks after the latest one to see if levels repeats or thereabouts. It's how the FTs relate to each other that determines the issue, as well as where the TSH lays.

If levels do repeat or thereabouts would check adrenals. If adrenal issue exist they need to be treated and corrected first before thyroid because adrenals interferes with thyroid levels and test would not reflect your true thyroid nature/levels.

If not adrenals, work down from there eliminating potential causes for your levels being low. In most cases, out lying issues needs to be corrected before thyroid for the same reason as adrenals.

Hope you don't mind my prospective.

Good luck!


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## Andros

LindaKN said:


> Argh - lost my post. I'll try again
> 
> Thanks so much for the quick replies!
> 
> Andros, I think you are right that my endo is only looking at TSH. She said that she wanted to see it higher, but never mentioned anything about my FT3/FT4 ranges. I never really thought about the mid-range, interesting feedback and food for thought!
> 
> As for the antibodies - I asked about that too and forgot that I had been tested last year. My tests were negative, but I'm daft and forgot to ask "what" test was performed....
> 
> As for the 3 out of 4: I have a small goiter on one side of my thyroid and have had a swollen nymph node on the same side ever since I became sick. I guess I had thyrotoxicosis (?) - my levels were much different when I was first diagnosed. No real eye problems or pretibial myxedema.
> 
> My biggest quest through all of this is to find out WHY I am sick. Is it really Graves? Is it something else? My endo is pretty cut and dry = You have Graves - If you're not feeling well stop complaining take the RAI (in so many words or less) - Don't believe everything you read on the internet.
> 
> I had an ultrasound but have never had the RAIU scan. There is a family history of FM and a new diagnosis of Lupus in my family. I've always wondered if there is more to the story that I haven't quite figured out!!
> 
> As a comparison here are my first lab results before Tapazole, etc, etc.:
> 
> May 2009
> TSH >0.01 ref ranges 0.3-5.6
> FT3 8.9 ref ranges 3.8-6.0
> FT4 21 ref ranges 9.1-23.8


Okay.............................now listen to me, dear one. If you have a swollen lymph node, you do need to have the RAIU. This will locate any suspicious nodules. This is very very important because some forms of thyroid cancer do present with swollen lymph nodes in the clavical/neck area.

Lymph node involvement "suggests" that papillary cancer needs to be ruled out.

http://www.cumc.columbia.edu/dept/thyroid/papillary.html

http://www.thyca.org/fna.htm

You are definitely hyperthyroid and it is possible that you have the criteria for Graves'. Heaven knows I don't want you to have any of it.

Also, worthy of note, cancer of the thyroid and hyper are often found to be bedfellows.

Please insist on RAIU. If this doc won't order it, find one that will. All Graves' patients should have one anyway to see what the rate of uptake is but now that you are on 
Tapazole, that will not give a true reading on uptake.

Or a sonogram. That would be my second choice but clearly not the best. Too much room for error sometimes.

We can cross the lupus bridge another day. As you see in my siggie, I have Lupus. Interestingly, getting the thyroid under control practically negates the Lupus antibodies. Thyroid is not the cause of Lupus (in so far as I know), but if it is out of whack, the others "party on!" They see an open door you might say.


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## AngeInBoston

Hi, welcome to the Board!

My daughter is 11 and was just diagnosed with Graves in Early October, after a year of constant stomach aches. I took her to the Dr. SO many times during that year, and always pointed out other symptoms too, most notably to me was that she had been an incredible athlete and she just dropped it. At one point she was diagnosed with Acid Reflux and I had her on Zantac for a few weeks, which helped the heartburn but not the stomach aches.

She's had constipation problems since she was a baby, and she doesn't eat a good diet with much fiber...I used to give her Benefiber more, but fell out of the habit.

Once September came, and she was constantly missing school with the stomach aches I really stepped up the Dr. visits, xrays showed constipation and they prescribed Miralax. I even went to the ER a few days later because I was afraid of a blockage, she was even more constipated and they did two enemas and prescribed Ex-Lax along with the Miralax. It turned into horrible diarrhea, and around that time they diagnosed the Graves too.

We've been working on regulating her levels ever since with Atenolol and Methimazole, yet the stomach aches never go away. She's been tested several times for Celiac Disease, and I tried going without milk for about 5 days with no change. Her Endo has taken more Xrays, (we''re currently battling serious constipation again), but she doesn't think the stomach aches have anything to do with the Graves. I followed up with her Pediatrician, but she just recommended to keep with the Miralax and work on more fiber in the diet.....but nobody seems to be getting that NONE OF THAT IS HELPING!

I've noticed how Drs bristle when you mention learning something on the Internet, yet of COURSE we need to research this way, they don't have time to sit with us for hours teaching us all about the disease.

Sorry, I guess my post doesn't have much of any advice, I just thought I'd commiserate about the digestion problems with you! The next step for us is to go to a Gastro specialist if it doesn't get better....I don't know how much longer she needs to keep suffering before that happens, it's making me pretty mad....I should call her Pediatrician I guess.

Good Luck,
Ange


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## LindaKN

Thanks again for all the responses!!! It looks like I should follow up with my family doctor and see if there are any other tests i can request - the RAIU seems like something I should insist on. Even though your comments are a little frightening Andros - it's something I've feared and if anything, having my mind put to rest would be a good thing.

Trying to learn everything, stay informed and find the right doctor seems to be a common quest... I find it especially difficult when symptoms change or are inconsistent. It's too easy to think that it's all in one's head, or too difficult to convince a dr that you just don't feel right.

AngeInBoston, I'm sorry to hear about the trials you've been through with your child. It must be infuriating trying to find the right course of treatment, support and diagnosis. Your daughter is lucky to have you by her side  Thank you for your feedback and sharing your story.

On another note, I've been taking these 4-strain pro-biotics for about a week and they seem to help a bit. I suppose there is the chance that my digestion isn't linked to the hyperthyroidism and I've developed some sort of intolerance to "who knows what".

For now, the search continues. Thanks for listening everyone - and any advice is truly welcome.


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## Andros

LindaKN said:


> Thanks again for all the responses!!! It looks like I should follow up with my family doctor and see if there are any other tests i can request - the RAIU seems like something I should insist on. Even though your comments are a little frightening Andros - it's something I've feared and if anything, having my mind put to rest would be a good thing.
> 
> Trying to learn everything, stay informed and find the right doctor seems to be a common quest... I find it especially difficult when symptoms change or are inconsistent. It's too easy to think that it's all in one's head, or too difficult to convince a dr that you just don't feel right.
> 
> AngeInBoston, I'm sorry to hear about the trials you've been through with your child. It must be infuriating trying to find the right course of treatment, support and diagnosis. Your daughter is lucky to have you by her side  Thank you for your feedback and sharing your story.
> 
> On another note, I've been taking these 4-strain pro-biotics for about a week and they seem to help a bit. I suppose there is the chance that my digestion isn't linked to the hyperthyroidism and I've developed some sort of intolerance to "who knows what".
> 
> For now, the search continues. Thanks for listening everyone - and any advice is truly welcome.


There would be nothing like the proper lab tests because yes, the antibodies wax and wane. Therefore, so do your symptoms.

Please let us know about RAIU. No one wants to discuss the "C" word and I surely do not blame anyone for that. The reason I am not afraid to broach the subject is because it may save your life. I urge you to follow through.


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