Apologies for the long post. My question is at the top, history, details below.

Question: I seem to be fairly responsive to PTU (got hive reaction to Tapazole after a month), but have been fiddling around with it and am on the brink of a hyper state. My TSH after making a climb to .27 has plunged back down to 0.01. and fT4s and fT3s are at the high point of the normal range. Any suggestions for a method of titrating and a maintenance dose for PTU? My Grave’s story and details are below.

Thanks so much for this forum! I hope to be able to contribute in some kind of helpful way in the near future.

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I was diagnosed with Grave’s Disease at the end of April 2017. It’s likely that I had been subclinical since mid-2015 as during that period I seemed to slim down a little too easily with my diet and exercise regime (had gained 20 pounds the year before and was quite sluggish). I was eating well and walking a lot, but the results were as though I was doing a lot more and if I missed a meal or was stressed, 5 pounds would drop off. I was going through a fair amount of stress with caregiving a dying parent, so that might have provoked things. In February 2017, I had been experiencing insomnia, migraines, hot flashes (especially at night) and other symptoms that I chalked up to being menopausal. To see if I could ease things, I went on a liver cleanse that my naturopath thought would help with my migraines. Felt off from the moment I started taking the supplementary powder, which increased in dosage as the cleanse went on (for a month). I was working at my regular job, plus consulting (had been busy with that all winter) and just plugged through the cleanse… feeling more and more anxious as the time progressed and gradually feeling weaker. I could hardly walk a block without getting winded. I had heart palpitations almost 24 hours a day. It turns out that the supplement, which I was consuming tonnes of, had kelp in it. I was taking in up to 460 mcg of iodine for 2.5 weeks and lesser amounts (but still high) for 1.5 weeks. It seems that this threw me from subclinical to full-on Grave’s. My GP put me on:

Tapazole 5 mg 3x daily

Atenolol 25mg 2x daily (or as needed)

Clonazepam (as needed)

 She referred me to the Thyroid Clinic at the Women’s College Hospital. They felt that the course my GP had put me on was fine.

 My levels on May 3, 2017 were:

fT4 – 50 pmol/L (ref 10-22)

fT3 – 20 pmol/L (ref 3.1-6.8)

TSH – 0.02 (ref .5 – 5.0) – earlier tests I was 0.01 TSH

I had normal Thyroid Peroxidase Antibody levels (this was from an end of April test), but

TSH Receptor Antibodies – 15.27 iu/L (ref <= 1.75 iu/L)

 At the end of May I started developing hives. I was allergic to the Tapazole. My endo quickly took me off and switched me to PTU – 100 mg 2x daily. She was ready to do the radioactive iodine treatment whenever I wanted to. But like many people on these boards, I would prefer to avoid that method. I was fearful of the side effects of the PTU – none so far. A little bit strong though. I take cetirizine 5 mg before my first dose in the morning to prevent possible allergic reaction. By May 26 my labs were still slightly on the high side, including a bit of bump in ALT and the TSH was still 0.01. I was to get labs done in 6 weeks and had a follow up with endo in December. The follow up should be sooner, but she’s booked solid. I was told to request more labs if I felt awful.

 By June 12 my labs showed both my fT4s (16) and fT3s (4.8) in normal range, TSH was still 0.01. My PTU dose was adjusted down to 50 mgs 2x daily. I was concerned that because my T levels were in a good range that they would continue to plummet with that dose of PTU. I titrated down to PTU 25 mgs 2x daily starting June 9.

At the six-week mark – July 27, 2017 these were my results:

fT4s – 11 (ref 12-22)

fT3s – 4.3 (ref 2.6 – 5.7)

TSH - .27

I was feeling quite low. Had low energy and difficulty digesting. I seem to get heartburn in the hypo zone.

On July 28 I titrated down to PTU 12.5 mgs 2x daily – those pills are difficult to cut!

Was feeling bloated and crummy, stopped meds for about 5 and half days, felt more like myself, but got worried about potentially becoming hyperthyroid and started them up again - PTU 12.5 mgs 2x daily. Was a bit lackadaisical about taking medication for most of August, kept thinking I was low and nearer to hypo. Also, pills quite crumbly and was getting unequal amounts. By mid-September I started to get an irregular heart beat again – keeping me up at night. Because I hadn’t lost any weight, I thought I might still be hypo and was sure that I had a heart condition (I thought this back in the winter too… I should know better by now). Turns out I am back to subclinical level.

TSH – dropped down to 0.01

fT4 – up to 18 (ref 12-22)

fT3 – up to 5.6 (ref 2.6 – 5.7)

I got a call from my GP’s office letting me know about the TSH. My doctor is wonderful. Felt a bit freaked that I seemed to be moving quickly towards hyperthyroid state, so took a full PTU 50 mgs that evening and have resumed with PTU 25 mg 2x daily.

 My endo doesn’t know about these latest results. If I had continued on with her recommendation of 50 mgs 2x daily I would have been down through the floor with hypo symptoms. I know that feeling crummy is likely unavoidable, but would like to slowly and gently bring my TSH levels down rather than using a sledgehammer approach.