[Darcy43]

#1059098

They never tested my T3 or T4 just the TSH……NOW 0.3. Alright!!!

This is within “normal range” as my endo said and is a huge difference from before. HOWEVER because I guess it is at the lower end of what is considered “normal” she still wants me to keep taking the methimazole.

When she had me at first taking a huge amount (30 mg twice a day – 2 pills a day plus a beta blocker) because I was HyPer and all those horrid symptoms occurred the first six months, then she drastically reduced it to 1/2 a pill once a day I got a bit concerned…hmmmm going hypo much doc and just didn’t want to tell me?….then the weight gain, crankiness and moodiness….yep I think it was still too much Methi to take and I was leaning now towards hypo.

Anyway I took it upon myself (I know let the thrashing begin) to adjusted my meds again, along with vitamin and mineral supplements and probiotics, to 1/2 a pill every OTHER day for one month prior to my next appointment and labs. Trying to wean myself off the proper way because my sides hurt and I am afraid for my liver. Heck I was told by the pmc doc to no longer even injest Tylenol due to the complications because of taking my methi…OTC Tylenol…and preggers can take that. Yet, now I get these good results. Hmmm…

Next appt isn’t until 8 weeks away, along with another, hopefully final lab.

Not promoting self treatment, etc. but everyone is different. The last three washes and my hair loss was minimal (totally different from chemo affect before – handfuls). I do believe less is more when it comes to Methi because I am balancing out finally.

Looking forward to my next appointment including the labs (pin pricks ouch), will continue to watch what I eat, exercise now that my heart and TSH is reading “normal” for me and pray things work out. I cannot WAIT for my next appt in July. Remission here I come.

I am picturing the depression cloud lifting high above. Thanks for all the support everyone…..One day…..

[Bobbi]

#1172111

No thrashing — just logic. If your doctor knows precisely what dose you are taking (i.e. if you are not tweaking things off and on whimsically), then he/she can make a better estimate of what dose you NEED to provide you with the proper level of thyroid hormone. Also, and perhaps more importantly: If your doctor even suspects that you are not “compliant,” then forever when you arrive with symptoms, it will be suspected that you have been playing with your dose. Even if you swear on a thousand Bibles that you have been diligently following protocol, the doctor may distrust the symptoms you report, believing that you’ve been tinkering again. In the long run, your best interests are served by be rigorously compliant with whatever dose prescribed. Yes, this sometimes means that we are on too high, or too low a dose for a brief period of time. But over all it builds up a trusting relationship patient to doctor.

[Darcy43]

#1172112

I agree Bobbi.

My only concern is that they are unsure and if I am getting positive results which I shared with my doctor (by the way) but was still told to stay the course, then I will follow as instructed. But, based on my own “trial” I am going to lessen my dosage as planned because I am getting good results and feedback and I do not want to damage my liver…ever. I had my enzymes check which is why my pcp said , well as long as you are on the Methi, DO NOT TAKE TYLENOL. He said there are a lot of precautions but he recommended my endo (he was the one who discovered the goiter asap and sent me to her). He said I am doing much better and the goiter has disappeared.

Thanks for your concern and great advice. I would never, ever want my endo to distrust my, but just like I listen to her trial and error, I am glad she is willing to allow me to tinker with my med as long as I follow up with her. She says “I must be doing something right.”

Again not advocating disobedience to the docs, but they are not perfect and everyone is different and for right now, unless something drastic or bad happens because I am listening to my body religiously, I am going to stick with my plan. I am still taking the meds, but weaning off (which was the plan of my endo in the beginning. If I didn’t have a change, then next would have been RAI, then surgery. Glad so far (knocking hard on wood) I don’t have to go that route now. I want to live a long time and even today, call it psychomatic symptoms whatever, I feel AMAZING just hearing that I, along with my endo orders, have been doing thing that have a positive affect on this dreadful disease. I pray and hope it only gets better.

[Kimberly]

#1172113

Hi Darcy43 – Personally, I would really push to have your doctor include Free T4 and T3 testing. If they need some convincing that this is appropriate, you can access the latest guidance from the American Association of Clinical Endocrinologists and American Thyroid Association in the “Treatment Options” thread in the announcements section.

Relying on TSH alone for ATD dosing can eventually send T4/T3 levels into hypO range.

Take care!

[Darcy43]

#1172114

thanks Kimberly. I asked several times why I couldn’t get that reading. The first two times they did check the T3 and T4, but this last lab was only for the TSH. I am definitely going to push for that. I really want to do whatever I need to for healthy healing and no relapses. Your knowledge has been profound and this board is really encouraging. Funny how they really cannot pinpoint what actually is the true cause of Graves/hyperthyrodism/hypothyrodism but this is a horrible fight to have. The body (or antibodies) attacking you. I feel bad for those when these accurate support groups and information wasn’t readily available like to my grandmother who had a huge goiter years ago (maternal).

thanks again for your help.

[catstuart7]

#1172115

Congratulations on the improvement, hope that cloud keeps lifting up and going away!

[Author]

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