Ha****oxicosis questions

[bnincongo]

I have many questions...
I think I have had thyroid problems for years. Mostly hypo symptoms. Occasionally I would have hyper symptoms. I finally begged my GP to test for antibodies in Dec. My lab results are below.
Labs:

8/2003
TSH 5.13

6/5/2007
TSH 4.87 (normal (.4-5.5)

Labs:
11/29/07
TSI 189 (should be 125 or less)
TSH 0.06 (normal 0.40-4.50)
Thyroglobulin AB 26 (normal 0-20)
Anti-TPO antibody 89 (normal 0-35.0)
Free T4 1.4 (0.8-1.8)

Lab on 12/18/07
TSH 0.05 (normal 0.4-4.5)
Free T3 347 (normal 230-420)
Thyroglobulin AB 32 (0-20)
Anti-TPO antibody 111 (normal 0-35.0)
Free T4 1.3 (normal 0.8-1.8)

Lab 1/18/08
TSH 0.37 (normal 0.4-4.50)
Free T4 1.1 (normal 0.8-1.8)
I had an ultrasound on my thyroid that was normal in Dec.

I finally got to see an endo last Fri (after a 4 month wait). He said I had Graves disease and when would I like to schedule RAI...

I said I wanted to think about it first. After research I think I would prefer to do the surgery to remove my thyroid however....
I don't have consistent symptoms for Graves disease. I have symptoms for both hypo and hyper at times. More often hypo symptoms than hyper.
When I asked if I could have ha****oxicosis the endo looked at me like I was crazy.
I have also been dx with lupus and sjogren's although the antibody test that pointed to lupus was in the normal range last time they tested it.
Any suggestions?

Thanks,

Linda

[NastyHashi]

Finally someone like me!!!

We have very similar labs.....TSH that jumps all over the place, TSI anitobies, other antibodies.

I too just had a trip to the endo about 2 weeks ago and am scheduled for a Pituitary MRI, Thyroid Sonogram, 24 Hour cortisol test, RAI Uptake Scan, Testosterone blood test.

My endo told me straight out that my case was certainly odd but she felt it was more like Graves' than Hashi's.

I asked her since I am a man, 350 pounds, if she has seen any other "fat guys" with Graves' and she said yes it was common. She said ultimately we would probably have to get rid of my thyroid through RAI which is how they usually treat Graves.

I asked her since my TSH was 19.8 if I should just go on Synthroid and she said "if I didnt know your symptoms and have all these tests in front of me then yes, I would have put you on Synthroid but if your Thyroid kicks in again when you are on Synthroid you will be getting a double dose and turn really hyper."

Not sure what I am going to do yet but at this point I think RAI is going to be my answer.

[bnincongo]

It appears that your endo at least wants to do all the tests to see the big picture.
The only thing I have are blood tests and an ultrasound which was "normal". I think I would feel better if my endo ordered other tests to cover all bases.
When I didn't agree to do the RAI right away, he said he would order an iodine uptake scan.... at least there is that. I asked if that test would help him determine more about the disease and his reply was:" I can already tell you you have Graves disease based on your blood tests".

Why would you do RAI rather than surgery? I have read that doing RAI can cause thyroid eye problems even much later.

Thanks for the reply... I too don't have problems with being thin.... I put on 40 lbs over several years.... even when trying to lose weight. Last fall I finally lost 14 lbs. Now I've put on 4 of those again... it just won't come off.

Linda

[NastyHashi]

I happen to agree with your doctor. You do have Graves' Disease. It's pretty clear cut. The only thing I would be interested to see is at least one or two additional TSI tests to make sure the first was not erroneous. If your TSI is high on multiple tests, you almost certainly have Graves', particularly with your TSH dipping so low without the Free T4 increasing very much. That particular point is a bit of an odditty.

Normally, when your TSH has approached ZERO, you would expect your Free T4 to increase to considerably above the normal ranges, however if I recall correctly, your TSH was right in the middle. Perhaps your thyroid had not enough time to react to the changes yet.

To follow this course of logic through, the RAI scan should tell him a lot. Next, I might press for a pituitary MRI to be sure your pituitary isn't playing games with your TSH.

For me, my TSH was clearly HYPO at 19 and change. That TSH is very high and not what you would expect from a guy with Graves'. Usually its the opposite. TSHis way low and Free T4 is way high. For me, my TSH is way high yet my Free T4 and Free T3 are perfect.

I've been tested for TSI multiple times. First I got a 165, then 175 then 185 and then 60 which was considered normal and during that time I felt GREAT! I stayed that way about 2 years and then all hell broke loose again and recently I got tested and my TSI was like 175 or something high like that.

Graves' does have a tendency to remiss and then come back. I find it perfectly coincides with stress. When I am stressed out (not regular daily stress but stressors like divorce, death, bankruptcy sort of stress) my Thyroid instantly goes wacky.

My biggest concern, and I asked the doctor about this, is that I chew tobbacco. I know RAI can cause havoc to your salivary glands, tongue and what not and I am just uncertain how my mouth would hold out with RAI. I am also afraid of going hyper during the kill-off process as my thyroid dies. On the other hand, if I get surgery, you can have all kinds of problems with the parathyroid glands and calcium levels afterwards.

For me, I will opt for RAI only AFTER I can manage to quit the damned chew. For some RAI is very non eventful. Your thyroid dies, you are put on meds and its the end of the saga so to speak.

[bnincongo]

Hi,

Thanks again...

I might ask about the pituitary MRI. It can't hurt.

I have also been dxd with sjogren's which destroys the salivary glands and tear ducts. My mouth is always very dry. I sometimes have very swollen salivary glands. So..... RAI would concern me in that respect as well.

Good luck with this... it sounds as if you have been dealing with this for a LONG time....

Linda

[GD Women]

FYI:

RAI was non-eventful for me. My dose was not that of total ablation. I still have some thyroid function, with the help of thyroid medication for the thyroid cells that were destroyed from RAI.

RAI does not cause thyroid eye disease. Although, RAI can cause a temporary worsening of the symptoms of thyroid eye disease if it is already present.

There are two major subtypes of TED. A milder form related to abnormal thyroid hormone levels, and an autoimmune congestive disorder that is usually more clinically significant. The first type of TED is the most common TED subtype seen, and with sensitive imaging tests, its seen in nearly all patients with autoimmune hyperthyroidism and in a smaller number of patients with hypothyroidism and in people with no evident of thyroid conditions. Thyroid eye disease it is more likely to happen in smokers and has only a slight tendency to run in families.

The autoimmune congestive Thyroid Eye disorder/disease (TED), is caused by a separate but close related antibodies to Graves' antibodies, almost cousin like. Thyroid eye disease antibodies attack the eyes where Graves' antibodies attack the thyroid. People who have high levels of both stimulating and blocking TRAb have a higher risk for TED.
Surgery will not prevent thyroid eye disease if the antibodies are present in your system. Nor will any of thyroid treatments or even euthroidism, due to thyroid eye disease being a separate autoimmune condition.


Antibodies, thyroid or others, can wax and wane, that is, go up and down in numbers/levels and are not an indication of disease. Other autoimmune disorders such as Sjögren syndrome, lupus, rheumatoid arthritis, pernicious anemia and in people who show no evidence of thyroid disease are sometimes positive for TPOAb. Therefore, diagnose and treatment is not done by antibodies alone. There is no cure nor treatment for antibodies, so in thyroid, levels are the prevailing diagnose, with antibodies confirming, if they are needed. Doctor is right, autoimmune thyroid as well as other thyroid conditions and some non-thyroid conditions can be detected through thyroid levels.

If there is autoimmune antibodies present but thyroid levels are normal, it's not active autoimmune thyroid, if at all. However, having these antibodies in the system might suggest the chance of becoming full blown autoimmune thyroid in the future.

Subclinical thyroid, TSH less than 0.1 without symptoms, or nodule or definite Graves' , nor TSH of 10 or less without symptoms, or TSH of 5 to 10 with symptoms or goiter or antibodies, which is suggested by AACE and US Government Guidelines, I personally would not consider any treatment.
THE 0.3 to 3.0 is just a suggested target level for levothyroixne treated patient.


Hope this information was helpful.