[NannyK March 15, 2012 at 7:28 pm Post count: 1]

#1058900

Hi Everyone!

I was diagnosed with GD on Jan 31st this year. I had been losing weight for the previous 6 months and had horrible hand tremors for about 4 months. I had went through a very stressful time at work just at the time these symptoms occurred so I chalked it up to that. I didn’t have hair loss but noticed my hair had less body. I have had three surgeries in the last two years, carpal and ulnar tunnel releases both arms and a torn meniscus in my right knee. I was diagnosed with PVC’s about 7 yrs ago, but no treatment needed at this time. I did have Epstein-Barr about 14 years ago and have never felt back to my old self since.

Thyroid Peroxidase Antibody
578 IU/ml
Negative <100
Equivocal 100-200
Positive >120

Free T3 12.5 pg/ml
Free T4 3.68 ng/dl
3rd Gen. TSH .0.005 uIU/ml

Thyroid Uptake w/scan

24 hr RAIU 64% 10.0-36.0%
TSH <0.005 uIU 0.27-4.2 uIU

Enlarged gland with uniformly increased distribution of activity. There is evidence of a pyramidal lobe.

My GP put me on 5mg MMI and 10mg 2x daily Propanolol for tremors.

Went to the Endo this week and he increased MMI to 20mg daily and has me scheduled for an ultrasound next month. I also had labs done there and have not received results to date. I am not sure what these test results are saying. I go back to the GP for more blood work next week. Any info on the results would be helpful. All both Drs say is you are hyperthyroid and have Graves Disease.

[KimberlyOnline Facilitator March 16, 2012 at 9:07 am Post count: 4294]

#1170770

Hello and welcome! We’re not doctors here, just fellow patients, so we can’t interpret lab results. I would encourage you to get a hard copy of your labs, so you can see where your Free T4 and T3 are compared to the “normal” reference ranges – and keep track of them over time.

Speaking in general terms having T4/T3 that are *above* the normal range indicates hyperthyroidism, as does having TSH that is *below* the normal range.

One issue to keep in mind, though, as you start this process is that it’s important for your doc to make dosing and treatment decisions based on free T4 and T3 and *not* TSH. TSH can remain suppressed for quite some time in Graves’ patients, so using this as a benchmark early in the dosing process can end up sending patients into hypO territory. The latest guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association notes that: “Serum TSH may remain suppressed for several months after starting therapy and is therefore not a good parameter to monitor therapy early in the course.”

The best scenario is if you can get your doctor to give you a lab slip for your *next* set of labs at each appointment. Then you can have bloodwork done in advance of your next appointment. The down side is that this does require two separate trips to the lab and to the doctor’s office. However, this allows you to spend your limited time with the doc actually looking at your labs and being able to ask questions, rather than having to decipher a phone message after the fact as to how to adjust your dosing.

Please check back and let us know how you are doing!

[Bobbi March 16, 2012 at 1:01 pm Post count: 1324]

#1170771

Perhaps a bit of explanation:

T3 and T4 are actual thyroid hormones. The number refers to the number of iodine atoms contained in the molecule. T4 must be broken down, in the body, into T3 to be used in the cells.

The word “free” indicated in your test results, means that the test was looking for molecules available for cell metabolism. Some of our thyroid molecules get bound to the molecules of other substances — proteins, estrogen, iron, etc. — and are NOT available for cell metabolism.

TSH is Thyroid Stimulating Hormone, which comes from the pituitary gland. The endocrine system in the human body has a series of checks and balances. The output of the thyroid is monitored by the pituitary gland. If the pituitary thinks there is not enough thyroid hormone, it raises its production of TSH to stimulate thyroid cells to make more hormone. Conversely, if it senses too much thyroid hormone, it reduces the amount of TSH produced. It acts a bit like a thermostat. So, as Kimberly pointed out, if the actual levels of thyroid hormone are too high, the levels of TSH should be low. And vice versa. Once we’ve been under treatment for a while, the TSH is typically the only number our endos look at. The test for it is very finely tuned, and minute particles of TSH can be detected.

Sometimes we can be hyperthyroid, but only parts of the thyroid gland are active in hormone production. But when we have Graves, ALL thyroid cells are involved in the production of hormone. So the test results which said “uniform distribution of increased activity” means that all of your thyroid cells showed uptake on the test, which is an indicator for Graves. Sometimes the test results say “diffuse” in the description — but that means essentially the same thing.

I hope this helps.

[modo202 March 16, 2012 at 2:41 pm Post count: 6]

#1170772

This is wonderful that I found this site. It’s been years of torture.
Before I go on with a story I wanted to know if you had any ideas about
using 7-KETO if I have grave’s disease…..thyroidechtomy…on synthroid but not on any cytomel. If I am not taking cytomel will the supplement be a better option. I know I do not convert well. It seems my numbers change so much. As a breast cancer survivor I was on Arimidex for 7 years which interferred with the synthroid…and other meds that I know interfere with it…but still….what about this supplement? Can it hurt me?
thanks so much

[KimberlyOnline Facilitator March 16, 2012 at 5:51 pm Post count: 4294]

#1170773

@modo202 – Hello and welcome to the forum! I’m not familiar with 7-KETO, but know of one patient who recently added a DHEA supplement to her regimen. She was already on replacement hormone, and the DHEA was added at the recommendation of an endocrinologist.

We aren’t doctors here, just fellow patients, but I personally wouldn’t recommend adding *any* supplement to your regimen without the advice of an endo or general practitioner who knows your entire medical history, as well as all the medications and supplements you are currently taking. Best to err on the side of caution!

Take care!

[modo202 July 24, 2012 at 12:11 pm Post count: 6]

#1170774

Thank you.
I am no longer using the 7-Keto
Am waiting for new labs.
I seem to have a very difficult time remaining stabilized for more than a few months.
I am on and off prednisone for swelling in the eyes from the GD that has also effected my eyes which is one of the most depressing side effect of this disease..I feel somewhat defective or disfigured…
I have developed a phobia of leaving the house…or it takes hours to get it together to go anywhere.
I am having trouble regulating my fat tissues in stomach and noone HEARS me. I am a small petite woman of 5’2″ and am 108 lbs…in reasonably good shape and a breast cancer survivor going to be 60 years young…
No matter what I can’t fit into clothes and there is what I call a THYROID STOMACH BULDGE…I believe it and other women have it also. Any thoughts there? I am also concerned about cortisol levels…this sight has saved me so many times….when dealing with the BC there was one sight that also “saved” me. Thank you so much. ANy thoughts on what people do for their eyes? Mine aren’t as bad as some but not normal…is it true they never return to normal?
NL

[modo202 July 24, 2012 at 12:11 pm Post count: 6]

#1170775

Thank you.
I am no longer using the 7-Keto
Am waiting for new labs.
I seem to have a very difficult time remaining stabilized for more than a few months.
I am on and off prednisone for swelling in the eyes from the GD that has also effected my eyes which is one of the most depressing side effect of this disease..I feel somewhat defective or disfigured…
I have developed a phobia of leaving the house…or it takes hours to get it together to go anywhere.
I am having trouble regulating my fat tissues in stomach and noone HEARS me. I am a small petite woman of 5’2″ and am 108 lbs…in reasonably good shape and a breast cancer survivor going to be 60 years young…
No matter what I can’t fit into clothes and there is what I call a THYROID STOMACH BULDGE…I believe it and other women have it also. Any thoughts there? I am also concerned about cortisol levels…this sight has saved me so many times….when dealing with the BC there was one sight that also “saved” me. Thank you so much. ANy thoughts on what people do for their eyes? Mine aren’t as bad as some but not normal…is it true they never return to normal?
NL

[snelsen July 24, 2012 at 12:23 pm Post count: 1909]

#1170776

To Modo. I do suggest you go to a good ophthalmologist who is familiar with TED thyroid eye disease, so you have good care, good measurements,and good advice. If you do have TED, there is a LOT to learn about it. If you have this eye problem, there a couple stages. In the active stage, you eyes can change a lot or a little bit. Sunglasses, eye drops and eye lubricant (both preservative free) are helpful.

I am not familiar with thyroid stomach bulge, never have heard of it nor did I experience it ever. However, now that I am older, (older than you) I have a bulgy abdomen that I never had in my life, and I am not overweight at all, and very fit. I don’t like it either, but I see the same tummy on most women I know. So I am not much help there.

I have had breast cancer twice, different breasts and different pathology.
I am very perplexed that you were told that Arimidex and Synthroid have drug interactions. I take both drugs, and I know I need both of them.
Here is one reference of many, but I suggest that you revisit this subject with your doctors and or pharmacists. Here is one site I found which I copied for you.

Interactions between your selected drugs
There were no interactions found in our database between Arimidex and Synthroid
However, this does not necessarily mean no interactions exist. ALWAYS consult with your doctor or pharmacist.

Arimidex is in the following drug classes: aromatase inhibitors, hormones/antineoplastics.
Arimidex is used to treat the following conditions: Breast Cancer, Breast Cancer, Metastatic, McCune-Albright Syndrome, Pubertal Gynecomastia.

Synthroid is a member of the drug class thyroid drugs.
Synthroid is used to treat the following conditions: Hashimoto’s disease, Hypothyroidism, After Thyroid Removal, Myxedema Coma, Thyroid Suppression Test, TSH Suppression, Underactive Thyroid.

I don’t know anything at all about cortisol levels, and do not believe that this a critical path for having Graves’. I guess you can ask your doc that question, too.
Shirley

[gatorgirly July 24, 2012 at 6:00 pm Post count: 326]

#1170777

Hi modo,

I have heard lots about “thyroid belly” and I have it. I’m only 27 and in otherwise good shape so I can’t blame it on age or genetics. I always had a flat tummy before Graves, ugh! I know high cortisol levels are associated with disproportional stomach fat. I don’t know much else, other than that stress and sleep have a lot to do with cortisol, so make sure you’re getting enough sleep and reducing stress as much as possible. I am so frustrated with my thyroid belly that I am going to schedule an appointment with the nutritionist (really meant for diabetics) at my endocrinologist’s office.

I also have TED and was on a huge dose of prednisone for a while. It will likely make you gain even more weight, though hopefully it will come off once you stop taking the prednisone. For me, it hasn’t and I’m not sure why. Like Shirley said, make sure you get in to see an ophthalmologist who treats TED or even better, a neuro-ophthalmologist. Good luck!

Kelly

[KimberlyOnline Facilitator July 25, 2012 at 10:54 am Post count: 4294]

#1170778

modo202 wrote:

I am having trouble regulating my fat tissues in stomach and noone HEARS me. I am a small petite woman of 5’2″ and am 108 lbs…in reasonably good shape and a breast cancer survivor going to be 60 years young…
No matter what I can’t fit into clothes and there is what I call a THYROID STOMACH BULDGE…I believe it and other women have it also. Any thoughts there?

Hello – I have experienced this issue as well and posted some info in this thread:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42669/

I just wish there were some easy answers as to why this happens to some patients, but not others…and how to keep it from happening!

[modo202 July 27, 2012 at 10:53 pm Post count: 6]

#1170779

thank you,
this is so much help to me
it’s a peacefullness and a calming once I feel connected.
This is such an on going nite-mare.
THe regulation comes for a few months and then needs tweeking.
However, now that I quit smoking 5 months ago and with the doctor only looking at my numbers not at my symptoms…not sure if am going hypo or if the metabolism and weigt aren’t from that. And do you know if seroquel interacts with the affect on thyroid?
thanks everyone

[KimberlyOnline Facilitator July 28, 2012 at 9:53 pm Post count: 4294]

#1170780

@modo – I’m not familiar with that particular drug…I would suggest talking to your doctor or pharmacist about any possible interactions.

Hopefully, your doc is looking at Free T4 and T3 when making dosing decisions for you, and not just TSH. The latest medical guidance notes that TSH can remain suppressed for quite some time, and therefore is not a good benchmark for dosing early in the process.

Take care!

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