Hi Elaine,

Thank you so much for your earlier responses to me. I got back new lab results and my T4 /T3 have dropped significantly again for a second straight month even though I’m only on a tiny 12.5mg maintenance dose of PTU. My blocking antibodies seem to have firmly taken control of my thyroid function at the moment. Symptomatically, I have been abnormally fatigued, have an increased heart rate at times, feel very hot at times, and my TED condition has been as bad at it has ever been.

MY PROBLEM:
I have tried small doses of T4 supplementation on four separate occasions but I was physically unable to tolerate the pills each time. It gives me a horrific stomach pain and causes me to double over. I have recently even tried an equivalent of Tirosint (gel capsule form of T4 supplement) but, unfortunately, I could not tolerate it either. I have not yet tried any compounded versions, any T3 only versions or any desiccated versions of supplementation.

----------------------------------------
QUESTIONS:
1) Are there any other possible options (other than T4/T3 supplements) to help raise my T4/T3 levels back up towards the upper half of the normal range? I am already on a pretty restrictive diet and take a broad range of supplements but any specific recommendations or suggestions that you have would be appreciated.

2) If I were to try a Desiccated hormone product or any other product with T3, would the T3 in it interrupt my natural feedback loop and leave me dependent on it for the rest of my life? I’ve read on the Living with Graves website that this can happen when supplementing with T3 which makes me hesitant to try it.
----------------------------------------

Overall, I am very discouraged because I feel like I have limited control over my body. I clearly have blocking antibodies controlling my thyroid right now but I seem to have no way to offset them other than to wait and hope that they balance out with my stimulating antibodies.

Thank you again for all of your advice and help to date! It is greatly appreciated and valued.

Sonia


BLOODWORK:

DATE TSH T4 T3 ATD DOSAGE

(0.32-5.04) (10.6-19.7) (3.00-5.90)

---2016---
Apr 6 <0.01 37 12.5
May 2 <0.01 25 no result Started Tapazole 5mg
May 24 <0.01 20 5.0 Tapazole 7.5mg
June 22 <0.01 29 7.2 Bugle Weed due to reactions to meds
Aug 5 0.03 15 5.0 Bugle Weed
Sept 7 <0.01 21 6.3 Started PTU 25mg
Sept 28 0.02 16 4.5 PTU 50mg
Nov 2 0.05 14 3.9 PTU 75mg
Dec 9 1.31 10 3.02 PTU 100mg

---2017---
Jan 13 5.92 10 3.45 PTU 75mg
Feb 2 5.86 9.7 3.80 PTU 75mg
Feb 16 7.40 9.7 3.38 PTU 37.5mg
Mar 8 6.79 9.0 4.37 Went down to 0 mg PTU after this test
April 7 0.99 11.5 4.21
April 21 0.70 13.1 4.52
May 19 0.70 12.9 4.23
June 16 0.04 15.3 5.15 Restarted PTU 12.5 mg on June 20
July 11 0.06 14.2 4.30 PTU to 18.75 mg on July 2
Aug 11 0.18 11.8 3.31 PTU to 12.5 mg daily on July 12

Hi,
Your PTU dose is too high and it's possible that you're in remission. You could lower your dose to 6.25 mg daily but will likely still need to add some form of replacement hormone. Since you're secreting TSH normally, you may be able to stop meds if your levels are still low on a lower PTU dose.

Often, it's the fillers in pills that we react to, but it's also possible that you can't tolerate the iodine in synthetic thyroid hormone. It's not true that if you use T3 replacement hormone, that you'll always have to since it's converted from T4 hormone. There are some reports that taking unnecessarily high doses of T4 can interfere with the normal feedback process and T4 production can be lowered when replacement hormone is stopped. If you do need to start replacement hormone, I'd probably try a very small dose like 1/4 of a grain (15 mg) of a glandular extract to see if you can tolerate it. Best, elaine