# Misdiagnosed? Please help



## poohbear61 (Oct 11, 2010)

In Oct, I was told I probably have Graves', based on symptoms, and labs results: TSH undetectable, free t4 & t3 high, TPI antibody high. Had RAIU scan Mon/Tues, results inconclusive- sort of slow uptake, but no nodules or tumors- Thurs days diagnosis therefore Graves'. I had stopped all meds and herbals for 2 weeks prior to the RAIU: no propanolol even. Was given prescription for methimazole and had more labs done on Thurs, I assume to provide a baseline for monitoring upcoming labs. I decided to wait til the lab results came in before starting the meth, and I got 2 results so far- and I am utterly floored. TSH, which was undetectable in Oct, is now high at 7 times normal, and free t4, which was high in Oct, is now less than .4 (undetectable according to my labs analysis). T3 not in yet. In your experience, does Graves' have these type of results, where levels completely reverse themselves and send you hypo with no treatment at all, not even propanolol or herbs? Or am I maybe looking at Hashi's instead of Graves'? I am dumbfounded- thanks so much.


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## Andros (Aug 26, 2009)

poohbear61 said:


> In Oct, I was told I probably have Graves', based on symptoms, and labs results: TSH undetectable, free t4 & t3 high, TPI antibody high. Had RAIU scan Mon/Tues, results inconclusive- sort of slow uptake, but no nodules or tumors- Thurs days diagnosis therefore Graves'. I had stopped all meds and herbals for 2 weeks prior to the RAIU: no propanolol even. Was given prescription for methimazole and had more labs done on Thurs, I assume to provide a baseline for monitoring upcoming labs. I decided to wait til the lab results came in before starting the meth, and I got 2 results so far- and I am utterly floored. TSH, which was undetectable in Oct, is now high at 7 times normal, and free t4, which was high in Oct, is now less than .4 (undetectable according to my labs analysis). T3 not in yet. In your experience, does Graves' have these type of results, where levels completely reverse themselves and send you hypo with no treatment at all, not even propanolol or herbs? Or am I maybe looking at Hashi's instead of Graves'? I am dumbfounded- thanks so much.


It is common for the patient to wax and wane for months, even years between hyper and hypo. Many of us have had that experience.

I would say you are hyperthyroid and one way to prove that out is to get TSI (thyroid stimulating immunoglobulin.) You should have none; if you do, you are hyperthyroid.

There is criteria for Graves' which is thyrotoxicosis, exophthalmos, pretibial myxedema and goiter ..................as per Dr. Robert Graves'.

TSI antibodies are stimulating antibodies but also binding and blocking antibodies and autoantibodies come into play accounting for the weird labs even though the patient presents clinically as hyper.

When you have time; let me know if you have any of the "criteria" and what some of your other symptoms are.


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## poohbear61 (Oct 11, 2010)

I definitely have the criteria of thyrotoxicosis (see Oct labs), not the eye symptoms yet except something called "lid-lag" (?), only skin symptoms are red elbows but nothing noticeable on shins, no swelling, slight tremor in hands, no noticeable goiter but swollen lump at thyroid, like a little Adam's apple almost maybe 2 inches wide. I was told that on a speedometer of 0-200, based on Oct results, everyone else going at 55 mph, I am at about 120 mph. So I guess probably since I been hyper for a month straight, this is just a downhill on the roller-coaster, and my current elevated TSH is gonna shoot me back up the hill and whee, here we go again. I was also told that if it is Graves', it is very early stages so some symptoms may not have manifested themselves yet. Thanks Andros for your input, my endo did not tell me that Graves' has highs and lows from hyper to hypo without treatment, and knowing that makes me more comfortable that I have been diagnosed correctly. I am going to have to insist on TSI labs from my HMO, my endo seems very reluctant to order more labs ( I have no co-pay on labs, so I suspect this is because of cost considerations?) I had to insist on them this last time, in order to decide whether to start taking the meth. Thanks again!


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## Andros (Aug 26, 2009)

poohbear61 said:


> I definitely have the criteria of thyrotoxicosis (see Oct labs), not the eye symptoms yet except something called "lid-lag" (?), only skin symptoms are red elbows but nothing noticeable on shins, no swelling, slight tremor in hands, no noticeable goiter but swollen lump at thyroid, like a little Adam's apple almost maybe 2 inches wide. I was told that on a speedometer of 0-200, based on Oct results, everyone else going at 55 mph, I am at about 120 mph. So I guess probably since I been hyper for a month straight, this is just a downhill on the roller-coaster, and my current elevated TSH is gonna shoot me back up the hill and whee, here we go again. I was also told that if it is Graves', it is very early stages so some symptoms may not have manifested themselves yet. Thanks Andros for your input, my endo did not tell me that Graves' has highs and lows from hyper to hypo without treatment, and knowing that makes me more comfortable that I have been diagnosed correctly. I am going to have to insist on TSI labs from my HMO, my endo seems very reluctant to order more labs ( I have no co-pay on labs, so I suspect this is because of cost considerations?) I had to insist on them this last time, in order to decide whether to start taking the meth. Thanks again!


I too would agree that you are in the early stages of Graves'; you have 2 obvious symptoms of thyrotoxicosis and lid lag. One "possible" with the nodule possible goiter.

TSI would clinch it; yes indeed. And remember, no matter how little, you should have absolutely none.

Here is reference

Results and Values
What do the test results mean?
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Just to put you further at ease, for many years I would flip back and forth between hyper and hypo but yet the normal thyroid panel (TSH, T3, T4) always came back in range. No one ever ran the FREES and no one ever gave me antibodies' tests. I was sooooooooooooooooo sick and as you see in my siggie, I have Lupus also which I know I had for years as well.

Thank goodness you have a doctor that has least made a diagnosis.


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## lavender (Jul 13, 2010)

I know I had at least 1 hyper period years before my Graves was diagnosed. I suspect I had highs and lows for years, but had trouble getting a doc to do the bloodwork. I am glad you have an endo to work with!


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## GD Women (Mar 5, 2007)

Early stages of Hashi is hypermthyroid levels. Before any treatment, I would do another Lab test 6 to 8 weeks after present Lab test to see if levels have stabled out and to varify which direction to take your treatment.

Thyroid eye disease is also seen in hypothyroidism as well as other autoimmune diseases. That is why the name has been changed to thyroid eye disease (TED) which is a separate disease and antibodies from thyroid although close cousin. However, it is seen in higher percentage in Graves' Disease.

Can't make a guessing evaluation with out knowing the actual numbers of you thyroid levels with Labs reference range. They tell what thyroid/disease might be present, then the antibodies just confirms if doctor doesn't know how to read levels in relationship to each other.

Your bump sounds like a nodule, I have one in the same place also. 
Get a mirror and a glass of water. Drink the water down as you are looking in the mirror at you adams apple area. You might have to tilt your head. If the bump in your neck moves up and down as you are swallowing the water, it thyroid/nodule and not the adams apple.

As it stands you can be either hypo or hyper. They share a lot of the same symptoms.


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## poohbear61 (Oct 11, 2010)

I had the doc show me the results of the RAIU- I don't have a nodule on thyroid, & he agrees. The bump is the gland which is swollen, I think.


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## greatdanes (Sep 25, 2010)

You mentioned you stopped the beta blocker and ATD, before taking the scan. How long were you taking them?


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## poohbear61 (Oct 11, 2010)

I only took the propanolol, not sure what ATD is. I only took it for 5 days Oct 6-11, I hated it so much, and by the 5th day was only taking 5mg/day. I had been using lemongrass and bugleweed/motherwort for a week or so early in Oct, but stopped all about the same time as I stopped the beta-blocker, on advice from this forum that the herbs would also mess up test results. So for 3 weeks up to the tests, the only things I was taking was a regular multivitamin and flaxseed oil capsule, once a day. I suspect that since my TSH levels are now 7x normal, thyroid gonna start pumping hormones with a vengeance, so I should prepare for another Manic Month soon? Thanks!


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## poohbear61 (Oct 11, 2010)

Oh sorry Greatdanes, I see ATD is anti-thyroid drugs. Have not started them yet, picked up prescrip same day as lab test, but decided to wait before starting them until I had results. Good thing I did, since they came back so hypo. I think the meth works on T4 /T3 and not TSH, which is actually produced by the pituitary and not the thyroid, am I understanding this correctly? So it won't help me until T4/T3 levels go upwards again?


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## greatdanes (Sep 25, 2010)

poohbear61 said:


> I only took the propanolol, not sure what ATD is. I only took it for 5 days Oct 6-11, I hated it so much, and by the 5th day was only taking 5mg/day. I had been using lemongrass and bugleweed/motherwort for a week or so early in Oct, but stopped all about the same time as I stopped the beta-blocker, on advice from this forum that the herbs would also mess up test results. So for 3 weeks up to the tests, the only things I was taking was a regular multivitamin and flaxseed oil capsule, once a day. I suspect that since my TSH levels are now 7x normal, thyroid gonna start pumping hormones with a vengeance, so I should prepare for another Manic Month soon? Thanks!


Oh, I see, that stuff acted as a ''natural'' ATD. Similar happened to me. I used the lemongrass oil, in conjunction with my low dose ATD, along with L-carnitine(which is great for hyper), and within 2-3 weeks i was heading hypo. The beta blocker also helps to lower the T3, so all that stuff together played a part. I'm glad you didn't start taking the ATD either!! I was mildly hypo for two weeks(stopped taking my ATD on my own) and i hated the achey part of it!!!!


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