Started meds, what symptoms best to track to test progress? Any tips for starting meds?

[Hashi-hacker]

Hi,

I've finally got agreement to start levothyroxine on 25mcg daily (major achievement believe me!). My question is - what should I track to see what effect the meds is having, what blood tests should I be tracking and how frequently? And do you have any tips for a newbie starting out on meds - happy to be pointed to reading.

I have a phone appointment with my GP on Tuesday and would like to be prepared!

DAILY - can do this myself first thing in the morning. (I read in the Paul Robinson book that he suggest tracking every few hours which seems intense to me!)

Body temp, blood pressure, resting heart rate, weight plus general symptoms - e.g. mood, fatigue/alertness, quality of sleep.

BLOODS - how often??

TSH, free T4, free T3 (can only get total T3 on NHS), rev T3 (can't get on NHS)

Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies (I have Hashi's).

Thank you!

Lyndsay

Thanks

[Aurealis]

Hi Lyndsay, I’d suggest that you make a list of the symptoms you currently have (or the most troublesome symptoms at least) and monitor these. Weight heart rate, temperature and blood pressure once per week at the same time could be useful if you keep these records over time. Paul Robinson’s advice about monitoring every few hours is for those on the short acting drug Liothyronine, you don’t need to do this with Levothyroxine though you could if you want to. To start with you should have a test every six weeks and six weeks after every dose change. The NHS does sometimes test fT3, but usually only if you are taking Liothyronine.There is some research evidence that Levothyroxine is best taken at bedtime (with lots of water and after several hours since last meal).

Good luck!

[Hashi-hacker in reply to Aurealis]

Thanks. So 6 weeks is the 'magic' number for testing. That's interesting about taking levothyroxine in the evening, I was expecting to be taking it as soon as I woke up. Good to know!

[Hidden in reply to Hashi-hacker]

Hello, I'm one stage ahead of you, having been "Promoted" from 25 to 50mcg!

They may say 8 weeks instead of 6, as they did with me, but when it gets near the time, if you find you don't feel so well, you could ask if it's OK and they may say yes. Less than 6 weeks doesn't give enough time to stabilise on the new dose.

I can only go on my own experience, and learned from this forum.

Since you were started on 25 (the usual starter is 50), I assume you are over 50 years of age and/or have a heart weakness or high blood pressure. Going straight onto 50 I suppose may be too much of a shock to the system for us. With thyroid, everything seems to be in slow motion - including the hypo patient sometimes! - so it does take months.

On 25 mcg I began to feel quite a bit better after a week or two, but, when it came near the 6 week mark, symptoms started to get a bit troublesome again. Until someone on here explained I was rather discouraged by this but apparently it's usual for this to happen. Even though you need the hormone replacement, it makes the thyroid produce less after a while, so a dip simply means that your dose is not enough and you are ready for an increase. Confusingly, it's possible with Hashis to get Hyperthyroid symptoms sometimes, when thyroid cells killed by the antibodies disintegrate and dump their hormones into the blood stream all at once.

I think the other tests, ferritin, liver and kidney function, cholesterol, vitamins, minerals etc, are normally done every three months.

You probably know most of this already, (I've learned most of it since being here) but just in case...

[Hashi-hacker in reply to Hidden]

Thanks Jnetti.

'Since you were started on 25 (the usual starter is 50), I assume you are over 50 years of age and/or have a heart weakness or high blood pressure.'

Nope, I'm none of the above! I'm 46, have low blood pressure (95/60 is normal for me) and as far as I am aware my heart is fine, and other than Hashi's and the associated symptoms, I am fairly healthy. My (non medicated) T4 and free T3 are both bottom/below range, so it sounds likely that the 25mcg isn't going to do much for me. Time will tell!

[Hidden in reply to Hashi-hacker]

I'm nearly 70! Thankful to have had reasonably good health up to now