"breakthrough thyrotoxicosis" Anyone else experienced this?

[ERSH]

Hi everyone,

So after almost 5 months of taking carbimazole then PTU apparently my thyroid levels are still not stable. I'm taking way more meds than anyone else seems to take and am still getting what the endo describes as 'breakthrough thyrotoxicosis" where despite being medicated my levels are still going up sometimes. .

Last week I was really exhausted and thought I'd gone hypo- but it turned out the exhaustion was from my body trying to override the meds and my levels had gone up not down. They've now increased my dose up to 700mg of PTU and apparently I'm not allowed to take anymore than 800mg so I'm praying this higher dose will stabilize me otherwise it's not looking good.

Has anyone else experienced this? Advice would be really appreciated.

My endo is nice and it's easy to get appointments/talk to him by email so I'm appreciative of that, but I'm not that confident he knows what he's doing and it all seems a bit haphazard (for example he told me to take levothyroxine when I thought I was hypo, before we had the blood tests back, and then obviously I had to stop taking it when we found out the levels were up not down ! - I was happy to do that because I felt so tired but in retrospect it was a bit daft to take the levo without knowing what was going on!)

Anyway - all advice would be really appreciated!

Thanks guys

[bantam12]

When I first had Graves in my teens I was never stable on meds so had to have a partial op, second time around in my 40s same thing so had RAI.

[ERSH in reply to bantam12]

Hi thanks for your reply!

That's interesting. How did you find the op and the years after (before you went hyper again)

[bantam12 in reply to ERSH]

Op was fine and I had no problems afterwards, went on to have 3 children and everything was normal, total surprise when I went hyper again, I wasn't feeling it, just picked up on an annual test. Had Carb then block and replace and got fed up with it all, a second wasn't an option so I asked for RAI, again no problems with it and I've been fine since.

My sister had a total op in her teens and she's had no problems for the last 40 odd years.

[ERSH]

That's reassuring! What's the recovery time like for the op? Neither you or your sister went hypo?

[helvella Administrator Thyroid UK]

Are you taking your PTU is a single dose?

It is possible that dividing the dose, as mentioned in the Patient Information Leaflet, could help. PTU has a very short half-life (about an hour) with biological activity being somewhat longer (8 or more hours) but a single dose could result in a bit of a roller-coaster effect.

(This is based on reading - not personal experience.)

[ERSH in reply to helvella]

thanks for this suggestion!

I'm taking it as 2 doses currently, one in the morning and one with dinner. I had asked my endo previously if he thought that spreading it over the day would help (given I'm taking 14 pills it would be easy to do even 7 separate doses!). He said no but maybe I should give it a try anyway?

Although my problem is less that I'm unstable over the course of the day (although I think I do get worse symptoms as I'm approaching my evening dose) and more that my level have been fluctuating (within an overall downward trajectory) over the past few months

[helvella Administrator Thyroid UK in reply to ERSH]

Usual Adult Dose for Hyperthyroidism

-INITIAL DOSE: 100 mg orally every 8 hours (300 mg daily); some patients may require 400 mg orally daily in 3 divided doses; rarely, a patient may require 600 to 900 mg orally daily in 3 divided doses

-MAINTENANCE DOSE: 100 to 150 mg orally daily in 3 equally divided doses every 8 hours

drugs.com/dosage/propylthio...

I get the impression that single-dosing potentially allows the creation of thyroid hormone to get going again around 8 or more hours after taking it.

The effects of food on PTU appear inconsistent.

ncbi.nlm.nih.gov/pubmed/81118

Therefore, it is possibly an idea to think about this.

[ERSH in reply to helvella]

thanks this is really helpful!

Maybe I'll just tell my endo I want to try it, it can't hurt surely anyway.

Although 14 doesn't divide by anything apart from 2 and 7 so I'd have to do uneven doses or do 7 a day I guess!?

My impression is that they tell people to do it in 1 or 2 doses because they worry about compliance/people getting confused!?

[helvella Administrator Thyroid UK in reply to ERSH]

I really can't see 5:5:4 being a problem!

I agree that simplicity is sometimes used as justification.

[ERSH in reply to helvella]

cool I'll try that from tomorrow I think! It's an interesting point that the longer gap between doses could give the thyroid time to start up again - definitely worth a try!