How long between does changes?

[MadM24]

Hi all

8 weeks ago I started 75mcg of levothyroxine daily following overly successful RAI. I think they left me too long before starting medication as the wanted to be sure the RAI had worked this time as I was slightly hypo before the treatment due to over medication.

when I started the Levo my Tsh was 84. I had the fatigue, extreme muscle pain weakness brain fog etc.

I had my first follow up blood test and yesterday a call from the consultant. Tsh is now 34. He says 8 weeks is too soon to increase the dose and anyway now the GP needs to decide treatment! I explained I still feel pretty awful. Muscle pain has improved but my hair is coming out in handfuls, I still am really tired and I feel miserable and depressed, my memory is crap.

I’m waiting from my gp to call. Is 8 weeks really too soon to increase?

As always they haven’t given me all the results. I have now written to the consultant 2 times requesting them, the gp gave me some historic ones but they don’t have them all.

I will pay for private tests after Christmas but just too expensive right now. ☹️

[helvella Administrator]

8 weeks would often be regarded as a sensible point to re-assess.

Good evidence for treating after RAI, especially when already inappropriately delayed, tends to be poor.

In your case, I think closer monitoring (by which I mean more frequent testing and re-assessment) would have been sensible. As it always is when someone with very high TSH is being treated.

Without a doubt it is sensible to seek a re-test through your GP. And do at least try to ask for FT4 and FT3 to be included.

Also, we are approaching the time at which you need to get the blood draw, and get the test results, and have a consultation, to even get a change of prescription - and all that asap so as not to end up in the Christmas delays.

[MadM24 in reply to helvella]

Thank you. I know they tested T3 and T4 as they were on the request form, but they haven’t given me the results. I shall follow up with the GP and if they say the same I can push at 8 weeks not being unreasonable now I know it isn’t.

[helvella Administrator in reply to MadM24]

Being on the request form is no guarantee they did them. All too often we see labs have high-handedly failed to run tests that have been requested.

[PurpleNails Administrator]

6 weeks is sufficient to assess a dose adjustment. So we say 25mcg daily increase after 6-8 weeks retesting.

Some who are extremely sensitive to dose changes find they do better with 10-12 weeks, but you are symptomatic with a very high TSH.

I think once you are not hyper & can be discharged to GP the specialist has effectively passed “concern” to GP. Terrible attitude.

Tell GP you are extremely symptomatic & you have very high TSH (89 to 34) & now overdue an increase.

Replacement initially tops up thyroid levels but by now it partially replaces output from already failing thyroid. This is why steady increases are required.

Final dose likely to be 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms). When your TSH was 89, in theory you could have been started on a full estimate dose, although standard is 50mcg with 25mcg daily increase after retesting and gradual increases are less shock to system.

FT4 & FT3 should also be tested along with key nutrients.

[MadM24 in reply to PurpleNails]

Thank you. I glad to hear my expectations are not unreasonable so I will follow up with my GP. They did test T4 and T3 as I saw them on the request form, they just ignore me every time I ask anything! Hoping I can get a better relationship with the GP.

[SilverAvocado]

I think when you've been under the care of the consultant it can then be hard navigating the system. It is not made obvious when you should go to the GP and when things are supposed to be done through the hospital.

It sounds like this consultant is giving you a push that they expect your GP to pick up your care. I think you should take them at their word and get to your GP as soon as you can.

If just tell the GP what you've told us here, that you are feeling very well, have a TSH of 34, and the consultant has given the GP the go ahead to adjust your prescription. It is very likely you will get a dose increase of 25mcg on the spot, or might need a round of blood tests first, but you should get that increase.

Best practice is to have your bloods retested and adjusted every six weeks. The adjustment should be 25mcg of Levothyroxine, unless you are getting in very close to your ideal dose. I was made to wait double that by my consultant.

In terms of blood tests, the first goal is to get the freeT4 close to the top of the range, and TSH down close to 1. GPs (and even Endocrinologists) will often dose purely using TSH, which isn't a very good method. Symptoms are a lof more important than blood tests.

It can easily take 3 or 4 adjustments to get your dose into the right ballpark. As others have mentioned, you've been started on a bit of a low dose, so it may take you longer to get to your optimal dose. It is good to get set up with your GP and get that first adjustment, as the whole thing is a time consuming process. Even if you get your blood adjusted promptly every six weeks it can still easily take six months to get your blood tests looking nice. And it can take much longer to close in on your perfect dose.

It's very expected that you will feel rubbish with the super high TSH you've mentioned. At the same time your body is going through a big shock to have lost a lot of your thyroid function all at once. Be gentle and kind to yourself for the next few months. Having RAI after Graves is also a huge adjustment because you go in expecting to be cured of one illness, and come out finding you now have a different illness to deal with, usually without any warning. I had my RAI due to cancer, and in my experience they just tell you nothing and leave you to find things out the hard way.