Post thyroidectomy care

[MajawithaJ]

Hello,

Haven’t been here for a while as I’ve been okayish after total thyroidectomy in March. Well, sort of. I’ve also had laparoscopy in the meantime which uncovered severe endometriosis. So the focus has been on that in the last few months.

I’ve had one appointment with an endocrinologist in April which was 6 weeks after the op & one in August was cancelled by them & the next one now is in December.

I haven’t been feeling well so went to GP to ask for a blood test to check my levels & discovered that they don’t even test T3.

I’m on 75mg Levothyroxine and my latest results from last Thursday are TSH 4.68 & T4 14.

I did a test in August before the laparoscopy

& my TSH was 1.20, FT4 16, fT3 3.5.

I’m now chasing my endocrinologist to see if should be on a higher dose than 75mg.

My question is how often did you see an endocrinologist in the months after the op?

It just feels like I’m not on their radar anymore & GPs don’t have the time/knowledge... I just want to feel ok and get the dosage right. Thanks in advance.

[Nanaedake]

I'm sorry that post thyroidectomy care is so rubbish. Reading your other posts you really haven't had good help or advice for general management of hypothyroidism from your health care providers.

Could you please post the lab ranges for your thyroid blood test results. It sounds like you need a dose increase but we need the lab range to be sure.

Always get a print out of results that includes lab ranges or register for access to results online.

[MajawithaJ in reply to Nanaedake]

Thank you, it’s so frustrating.

Deep sense of regret that I had thyroidectomy if this is what the care is like afterwards.

I don’t have the range for the latest ones as I’ve just been told the results over the phone, I do normally ask for print outs.

But I did ask for the TSH range of the latest one

TSH 4.68 lab range 0.2-4.20

T4 14 (don’t know the range)

They didn’t test the T3 as they don’t do it at the surgery.

August results

TSH 1.20 range 0.27-4.20

FT4 16 range 12 - 22

FT3 3.5 range 3.1 -6.8

As you can see there’s a big jump with my TSH & have no idea what that means, could be to do with my laparoscopy. I think I’m feeling it tho, feeling constantly tired, stressed out and.... angry. But that’s another post!!

I think I’ll have to test vitamins privately in order to get a fuller picture as last time I had it done after the op, the endocrinologist said that he’ll get in trouble for testing my vit D, B12 & folate!

[Nanaedake in reply to MajawithaJ]

"But I did ask for the TSH range of the latest one

TSH 4.68 lab range 0.2-4.20

T4 14 (don’t know the range)

They didn’t test the T3 as they don’t do it at the surgery."

As you can see from these results, your TSH is elevated above the lab range. You definitely need a dose increase of 25mcg and repeat in 6 weeks time when you will likely need another increase.

Weight /dose ratio is a guide for starters but you need to adjust according to blood test results. As we don't have the range for FT4 and no result for FT3, I can't comment accurately but I suspect FT4 is low and you need it in the upper part of the range. Most people feel best when TSH is around 1 although I tolerate a higher TSH so long as its within the lab range and FT4 not too low.

Have you seen your GP because normally you are discharged to your GP. However, they will not follow you up, you have to take the initiative to make appointments and keep going back until your dose is satisfactorily adjusted.

You could ask your GP to check your vitamin levels, including calcium but you'll need to offer a reason for it such as a list of symptoms. Symptoms of low vitamins and thyroid dysfunction are often similar so you'll need tests to differentiate.

I have had a partial thyroidectomy and am similar height although a little heavier than you and take approx. 110mcg of levothyroxine daily so I think you are on a lower dose than one would expect for TT.

[MajawithaJ in reply to Nanaedake]

Thanks so much for your reply. I haven’t been discharged officially but it was the easiest to just go to my GP & have a blood test done there, I didn’t think they would test the vitamins but I will try like you’ve suggested.

It all points towards a higher dose, I’m really hoping to hear from my endo or get an appointment ASAP. Thanks for your reply, that’s super informative.

[Nanaedake in reply to MajawithaJ]

If your Endo and GP refuse to test vitamin levels you can get them done through an online lab such as Medichecks and Blue Horizon. Many people on this forum use them if you post your results on this forum and ask for advice people will give you excellent responses.

Read some of SeasideSusie's responses to other people on vitamins to see what I mean.

[MajawithaJ in reply to Nanaedake]

Yes I’ve been looking into Medicheck ones & think I’ll just have to bite the bullet & do it online. Thank you!

[MajawithaJ]

Thanks for your reply. Sorry to hear you are struggling.

That’s interesting what you say about the weight. I’m not short and thin, 165cm tall, and about 67kg. I did query the 75mg dose at my 6 week appointment & they said that’s a starting dose and they’ll take it from there. Except they just forget about you.

I’ve been going to the gym regularly doing HIIT classes & running a bit. I think if did this amount of exercise in my previous life I would have probably lost a stone by now but post op, I seem to just keep level at this weight.

How much T3 are you taking & have you noticed the difference @janeyjaney?

I need to see if I have any private health cover left for this as I used up loads for my Endo treatment.

[MajawithaJ]

Gosh, that makes sense. I think the dosage was decided while I was still at the hospital and then when I had my 6 week check up, he looked at my T3 & T4 at the time & said there was no need to go any higher.

Baring in mind at the time I thought that I’ll be having regular blood tests to monitor & tweak the dosage which just hasn’t happened.

[MajawithaJ]

That’s interesting what you say that you know when is what. And that one dose can’t fit all, it so makes sense.

I guess I’m still learning. I’ve had the “waking from the dead” feeling in the morning recently regardless of 7,8 hours night’s sleep and just thought that I’m anaemic again but now I think it might be the thyroid. And I had a massive hair loss a few months ago which I just attributed to Thyroidectomy as that’s what happened 3 months prior.

I went back to rereading “Tired Thyroid” last night & the author said that when her dose is too low she has nightmares, which I seem to be having at the moment-full blown, horror, waking up with relief that it was just a dream!!

I’ve managed to get hold of the endo secretary & I’m hoping to either get a call from him or see him & that he’ll increase my dose.