Post thyroidectomy

[MajawithaJ]

Hi all,

Was wondering if you can enlighten me. I’ve had a thyroidectomy on Monday due to Graves’ disease. It went well, I’m on calcium for the next two weeks and seeing the surgeon to review calcium in 2 weeks time. I was given 75 mg Levothyroxine but no mention of when I should do the thyroid hormone tests to see what the right dose is. The nurse on discharge yesterday said that this dose is for life.

What is your experience, how long till you had a test to see whether the dose should up or down or stay the same? Thanks in advance.

[SlowDragon Administrator]

Bloods should be retested 6-8 weeks after each dose change in Levothyroxine (or brand change too)

Many people find that different brands of Levothyroxine are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

When were vitamin D, folate, ferritin and B12 last tested? These need to be at optimal levels

[MajawithaJ]

Hi SlowDragon, thank you. I remember reading here about the Teva tablets not agreeing with many. Annoyingly I’ve got 2 brands 50mg Actavis & 25mg Teva. Thanks for the advice re how to take it. Already made a rookie mistake, taken calcium straight after thyroxine and a coffee half an hour later.

Think I had ferritin tested recently but can’t remember vitamin D, folate or B12. When I asked my endo he said we tested that back in September & it was all fine. Hmm. Is it even done on the NHS or is the best bet doing it via medicheck?

[MajawithaJ]

Thank you @reallyfedup123 that’s good to know re ranges & Graves.

I managed to get hold of my endo & he said he’ll arrange blood tests for in 6-8 weeks & that 75mg is a starting dose & will decide after 6-8 weeks whether to up it.

After having the weekly blood tests & being in touch with my endocrinologist pre-op, was kinda worried I’ll drop off their radar without a proper dose for me.

Mentally, I’m in a “what have I done” getting rid of my thyroid mode so I want to make sure I’m on right medication.

Thanks all x

[pennyannie]

Hello again Majawithaj

You might remember I replied to you prior to your surgery.

Well, put simply, you need whatever dose of thyroid hormone replacement that relieves your symptoms and brings you back to a level of well being acceptable to you.

A fully functioning working thyroid would be supporting you daily, drip feeding you, with approximately 100 T4 and 10 T3.

It's early days, just take your time, wait for the 6-8 weeks as already suggested and then let's see what the bloods say, and what your endocrinologists has planned for you.

Graves thrives on stress and anxiety, look forward to better health, don't overthink it all, relax and be kind to yourself.

[MajawithaJ in reply to pennyannie]

Thank you pennyannie,

It all makes sense, thanks for your advice especially re Graves. Must look at this as a positive.

[MajawithaJ]

Just wondering, I received a blood test form from my endocrinologist in the post today, this is the one I need to do in 6-8 weeks. It’s just for TSH. Surely they should test T4 & T3?

[pennyannie in reply to MajawithaJ]

Hello again,

Yes I would have thought you needed more than a TSH blood test.

I don't know " the Guidelines " but realise now I was only with a TSH blood test for years, despite my unwellness.

Disillusioned and disappointed doesn't come close to my how I feel about the lack of help and knowledge I found on the Nhs roundabout to nowhere.

If you want more people to see this last question you posted some minutes ago, I suggest you start a new post asking the question -

" 1st blood test since TT - seems to be TSH only - shouldn't it include T3 and T4 "

or something like that.

Think it will be missed having been tagged onto the bottom of your original post.

[MajawithaJ in reply to pennyannie]

Thanks @pennyannie I will do that. I really can’t get my head around all this but I thought that after all this time of doing my blood tests before TT and starting Levo that they’d need more info to see what the right dose is.

[MajawithaJ]

I was thinking that @JaneyJaney especially at the moment, it’s still early days from the op & have no idea what’s me & hormones & post op knackeredness.

[MajawithaJ]

I hope you get the right dose @janeyjaney I was told before the op they’ll start me off on 100 but they gave me 75mg after all, not sure how they worked it out.

[Sophitje]

Hi, i had surgery (TT for Graves) on the 20th March so recently too and they put me on 100 mcg. I'm 49 kg, 160 cm, i think the initial dose is in relation to your BMI. 75 mcg seems quite low, are you very light/petite? At the moment I'm feeling fine but I've taken levo before through block and replace treatment 2007-2010) and i know that my body is very sensitive to variations, whether it's over replaced or under, but symptoms for me seem similar, mainly palpitations, nervousness and sore eyes, i have very mild TED and it always flares up if levels oscillate too much. The brand of Levo they gave me at hospital on discharge is Activis so I think I'll stick with it if it carries on suiting me but 10 years ago i used Teva i think, which was fine for me back then (although i hear they recently changed the formula and it's created issues for many patients). I am due a blood test on the 25th April so that's 5 weeks after op. Most endo will recommend 4 to 6 weeks test post operation. I hope that helps and wish you a good recovery. Now that i am on week 2 off work and feeling much better, I'm chilling (doctor's order!) and making the most of the time off work!

[MajawithaJ in reply to Sophitje]

Hi @Sophitje, glad to hear you are recovering well, thanks so much for your reply. I have no idea how the endo came up with 75mg as he said before the op, that they’ll probably put me on 100. I’m not light really 67kg, 168cm. It does worry me a bit that 75mg might be low. I will have to see at the first blood test.

I’ve heard about Teva but in the end I had no choice & it’s the 25mg of the dose. The 50mg is Actavis.

I’m also taking calcium for 2 weeks.

I’m definitely feeling better in terms of feeling much calmer. Everything is a bit in a slow mo, after things always being on fast forward before the op, if that makes sense. Wishing you a good recovery 👍

[Sophitje in reply to MajawithaJ]

Yes 75 seems a bit low. If you are in touch easily with your endo, maybe check with him /her, especially as he /she mentioned 100 before op. Just for peace of mind. Take it easy!

[MajawithaJ in reply to Sophitje]

I will, thank you!