4/30 FLARE better but shoulder pain continues. Need feedback, please!

[Chicama]

Good evening/ good morning/ good afternoon ALL!

Hope you are enjoying spring. It’s cool here so spring has held on. The scent of mock orange and honeysuckle fill the air just before the Pennsylvania heat and humidity hit! I am in heaven in the garden.

When last I wrote, I had a HS-CRP of 56 on 4/14 and couldn’t turn over in bed. I was given feedback from Dorset Lady and PMRpro and other kindly folks. I went up to 17.5mg for two weeks and dropped back to 12.5 (the last dose I KNOW I had no symptoms).

On 5/15/23, HS-CRP was down to 21.1, nowhere near 7.3 before my thyroidectomy/ parathyroidectomy but I felt BETTER. Today is Day 27 of 12.5, I am still not symptom free: pain in shoulders, and intense fatigue. I am careful to not overdue physically and mentally.

The fatigue I feel may be from a TSH of 17.46 (up from 5.84 in April); the oncologist managing my thyroid hormone treatment is using “standard of care algorithms” and my body is starved (hence the jump in TSH) on her formula of how much thyroid hormone to prescribe. I’ve switched my thyroid treatment management to my functional care-oriented nurse practitioner for a “patient centered treatment.”

My hypothesis: my PMR was beautifully controlled before my thyroidectomy/ parathyroidectomy. Without these body parts my metabolism is upside down and it will take time to titrate to the thyroid hormone dose my body needs.

The rheumatologist RECOMMENDS (doesn’t demand!) going up to 15mg for two weeks and then down to 12.5mg for two weeks RATHER than staying at 12.5 until I feel better.

I’m uncomfortable about the increased and decreased dosing; my body is ultra-sensitive to these changes AND think that my lack of proper thyroid hormone dosage is impacting my metabolism hence extending my PRM disease activity aka FLARE.

Thoughts on what to do are welcome! Follow the rheumatologist? Stick to 12.5 until my pain goes? Or something else?

As always, thank you for lending me your brain and experiences.

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to follow Rheumy’s advice - if you’ve been on 12.5mg for almost 4weeks there’s no guarantee staying there longer for now will improve things.

So worth trying the increase -disappointing though it may be.

[Chicama in reply to DorsetLady]

Thank you, Dorset Lady! Between you and PMRpro I am reconciled with going up. I wasn’t thinking clearly…

[PMRpro Ambassador]

I also think the rheumy has a point. That TSH is high and it would account for the fatigue - will the thyroid medication be increased?

[Chicama in reply to PMRpro]

Good with following the rheumy suggestion and see how I feel 4 weeks from now. I’m betting lots better!

I’m moving from a mono therapy T4 only to T4/T3. Increased T4 (150 mcg) and added T3 (10 mcg) a week+ ago. I don’t feel a difference…