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My endo is very confused

thyroiditis graves hypo

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#1 thyroidbz8

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Posted 23 June 2018 - 03:05 AM

Firstly, I'm sorry if it's not okay to post what I already posted on another forum, but I'm really really really worried. This has been my story so far:

 

I started having extreme fatigue on February this year, and beside maybe increased anxiety, that was the only Hyper symptom I had. I had three 'fatigue crises' where the fatigue became very, very, very pronounced and I get anxious. Went to the doctor and got blood work done, everything was normal, but the thyroid tests. These were the results:
 
March '18
 
TSH: 0,008
FT4: 2,53
Anti-thyroid peroxidase (anti-TPO): higher than 1.500
Thyroglobulin antibodies: 232.1
TSH receptor antibodies (TRAb): 9.17
 
The endo then hesitantly gave me a Graves Disease diagnosis. He said I lacked important symptoms such as a goiter and eye disease. I do have family history, though. So he put me on Methimazole 30mg. I took it and felt a slight improvement two weeks after and it lasted for two weeks only. Then my symptoms took a turn for the worse. The fatigue intensified and my 'fatigue crises" happened more often. I also started to show new symptoms, symptoms that indicated Hypothyroidism such as sleepiness, weight gain, muscle cramps and aches, depression and a constant brain fog. By May, I took some tests again. The results were such:
 
May '18
TSH: 0,22
FT4: 0,62
 
He lowered the dosage to 10 mg which I took for a month before getting tested again. By now (June) my Hypo symptoms got worse naturally.
Results:
 
June '18
TSH: 21,40
FT4: 0,85
 
This time he told me to stop the Methimazole completely as I'm Hypo, and to get tested in July. But the thing is, he said he is even less sure of this being Graves now. He said Graves patients don't usually go Hypo after less than 3 months. He told me I might have/have had an "acute thyroiditis", whatever that may be. Or maybe even some other systemic illness. I'm really concerned because this is the first time a doctor tells me he doesn't know what I have. I have appointments with other endos, but they're not until August. I think I might have to see if I can find any other endo in the city to see me asap. I feel really uncomfortable without medication. I searched the web for info, but it's really confusing. Does anyone have a clue?
 


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#2 joplin1975

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Posted 26 June 2018 - 01:11 AM

Have you had a thyroid ultrasound? If not, that's some thing you need to have done ASAP.
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#3 thyroidbz8

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Posted 26 June 2018 - 02:20 AM

No, but he gave me a manual examination, and I don't even have a goiter?



#4 joplin1975

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Posted 26 June 2018 - 11:17 AM

Given your symptoms and especially your antibodies results, a thyroid ultrasound is imperative. I'd be less concerned about a goiter and more concerned about nodules.
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#5 thyroidbz8

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Posted 26 June 2018 - 05:20 PM

Wouldn't the doctor have felt it? Well, I'll look into it.



#6 joplin1975

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Posted 26 June 2018 - 05:50 PM

No. Only if it was very superficial and easy to feel. 


Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.





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