Desperate for input on thyroid replacement med

[lovesweetpeaches]

Over 2 years ago,  my thyroid was removed. I've always been EXTREMELY sensitive to all types of medications, so I haven't had a chance to grieve having cancer because of the fear I would have exactly the problem I'm now having. Since the surgery, I've been on over 30 different doses of 5 different thyroid meds and couldn't tolerate anything. I had a page long list of symptoms. After a myriad of tests, the conclusion is allergies to the fillers was the problem. The starting med after surgery was Synthroid 175mcg. After all the experimentation, my endo started me on Levoxyl 88mcg and generic Cytomel 5mcg, 8 weeks ago. I spent the entire time miserable from something in the Cytomel, but I stuck with it until I saw her yesterday. She said my numbers looked really good and I could ditch the Cytomel, and continue with only the Levoxyl 88. But I can already tell from how I feel this morning, that is not going to work. There are numerous posts online about adding an NDT but I need help understanding how much and what exactly is need. I think she'd prescribe something if I asked her but I don't know what to ask her for. I'm listing my TSH, Free T3 and Free T4 on my last 3 doses of Levoxyl. Any advice would be greatly appreciated. Thanks in advance!  

3 Nov 16- 112 mcg
TSH     0.03 Range 0.36- 3.74
Free T3 2.86 Range 2.18- 3.98
Ftee T4 1.79 Range 0.76- 1.46

29 Dec 16-100 mcg
TSH     0.02 Range 0.36- 3.74
Free T3 2.33 Range 2.18- 3.98
Free T4 1.36 Range 0.76 -1.46

28 Feb 17- 88 mcg
TSH     0.01 Range 0.36 -3.74
Free T3 2.58 Range 2.18 -3.98
Free T4 1.32 Range 0.76 -1.46

[gimel]

The 88 mcg of T4 is not very much at all for a person after a TT.  There are a couple of things I want to clarify.  You said you started on 175 mcg of T4.  Why was it reduced, and to what level at that time?  How were you feeling at the time?

After the dosage was reduced to 112, how were you feeling and why was the dosage reduced?  Same questions for when you were on 100 mcg.

IF tested for Vitamin D and B12, please post results.  Also, what dosage of D are you taking?

Finally for now, have you been tested for cortisol and ferritin?  If so, please post the actual results.

[gimel]

I have no idea why your doctor would think that you would be okay by reducing your T3 and staying at the same level of T4.  Why do you say that you can already tell it is not going to work?  What symptoms do you have?  Also, do you take your med before the blood draw for those tests?  Have you been tested for Vitamin D, B12 ferritin, and cortisol?  I ask specifically about the ferritin and cortisol because people sometimes have reactions to T3 med when those are not optimal.  That would be a more likely explanation than a reaction to the T3 itself.  Cytomel is one of the few meds that can say that it has no known side effects.

[lovesweetpeaches]

Gimel, thank you for your quick response. I've been reading your posts for a couple of years now and I'm so happy you've responded! I usually DO take my meds before labs, but this time I didn't due to fasting. I have had two rounds of complete bloodwork done in the last 3 months- Comprehensive Metabolic Panel, CBC, etc. and everything else is normal. I take Vitamin D3, Magnesium, Zinc, Calcium daily; B12 and Potassium 3x week. The first two days I took Cytomel, I cut them in half and took them am/pm, to ease into it. The third day, I took it all in the am. Within an hour, it hit me like a ton of bricks. It was as if the inside of my body was slammed with a tidal wave, to the point I couldn't even speak. I curled up on my bed, and stayed there, about an hour, until I felt it subside. I did drink two bottles of water to see if that would help flush it through my system more quickly. After that day, I cut them into 4 pieces. If I took it, I felt "better" in one sense, but it felt as if someone was standing on the center of my chest. I also had a splitting headache that wouldn't let up, accompanied by the feeling of a vise crushing the joints on both sides of my face, at the jawline.  But if I skipped it, my shoulder blades and collar bone ache so badly, I can hardly stand it.  It's as if my body is screaming at me that it needs SOMETHING.                                 My guess is the problem is an allergy to one of the fillers. I've been to see an allergist who tested me for a boatload of things, but she also said it would be virtually impossible to isolate the ingredient/s that are causing the problem from different medications. As for today, the ache in my neck and shoulders came back because I only took a 1/4 tablet yesterday before I saw the doctor in the am and none after. I tried to tough it out but finally, around 2pm, I gave in and took 1/4 because I hurt so much. It eased up within the hour after taking it. I wanted to at least try what my doctor suggested yesterday. She seemed thrilled about my Free T4 but I've read repeatedly that T3 needs to be in the upper third of the range. Until I was on 88mcgs of Levoxyl, I was having recurring episodes of rapid heartbeat. I've been to the ER 13 times in the last couple of years, including three overnight stays because of it, once by ambulance with a heartrate of 223 bpm. My heart has been thoroughly tested and no problems there. This new endo is supposedly really good...I transferred to her back in Nov. of last year because, after a year and a half of experimentation,  my last endo literally told me he had no idea what was causing my problems.
Until I started Levoxyl, my body was processing the other meds in reverse. The lower the dose I took, the more hyper I became. I felt like with Levoxyl, I finally had an answer to my prayers because all of the symptoms I'd been dealing with went away, other than the palps. And those have finally disappeared on the 88. Three doctors now have said to me "You're a fascinating case. I'd be interested to see how this turns out" or some variation of that. This whole thing has taken over my entire life, and I just want normal everyday  back. If I understand everything correctly you've written on here in the past, if I can get my T3 up, I should finally be able to get my life back...I'm praying.