Advised to stop levothyoxine- I thought this was a lifetime thing!? So confused

[Meggy222]

Hello all,

I received a letter from my endocrinologist telling me to stop taking my levothyroxine immediately.

I’ve been taking medication since the birth of my son 4 years ago. I was told then it was post partum thyroiditis- it didn’t go away and I took my medication right through this pregnancy until now.

My doctor advised me I went through a classic case of post partum thyroiditis once again this time round .

Here is my results - ranges are freet4(12-22pmol) tsh (0.3-4.2mU/L)

September

T4 3.4, TSH 67.58, T3 O

October

T4 23.9, TSH 0.24, T3 -0

November

T4 26.8, TSH less than 0.01,T3 7.7

January

T4 20.3 , tsh less than0.01

I’m concerned , I don’t want to stop my medication- I’m amazed it’s gone after all these years. Has anyone experienced this?

I’ve had a discussion on this forum before and lots of ladies suggested hashis and advised on antibody testing ....to date my endocrinologist hasn’t tested for these ! How can she be so sure it’s not hashis without this confirmation?

She is going to call me tomorrow and I’d like to be well versed on what I need to ask her, I hope she doesn’t fob me off!

Thank you

Megan

[SlowDragon Administrator]

Need ranges on these to interpret

As advised in previous post, for full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Either you have very low vitamin levels or you MAY be slightly over medicated

Your November result FT3 7.7 looks high, which would mean you are over medicated. But you need ranges to know for certain

January test has no FT3

High FT4 and low TSH can be due to very low vitamins eg

healthunlocked.com/thyroidu...

Reason - low vitamins

healthunlocked.com/thyroidu...

I would want FULL testing of vitamins and FT4 and FT3 before changing dose

See if you can get full thyroid and vitamin testing from GP tomorrow. If not order private test and decide after you get results

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

[Meggy222 in reply to SlowDragon]

Thank you slow dragon

Ranges were noted above- here they are again

ranges are free t4(12-22pmol) tsh (0.3-4.2mU/L)

Is my tsh currently suppressed ? Is this ok? As it currently stands do my recent results look ok ?

I will arrange for those tests to be done as recommended

Thank you so much

[greygoose in reply to Meggy222]

TSH is irrelevant once you are on thyroid hormone replacement, unless it goes high. It can go as low as it likes, it doesn't matter. Your FT3 tells you if you are over-medicated. And, if you are over-medicated, you just need to lower your dose slightly - not more than 25 mcg, though. You do not need to stop it completely.

I really don't think hypos ought to see endos. The average endo knows so little about thyroid and treatment, that s/he usually does more harm than good!

[Meggy222 in reply to greygoose]

She just rang me and I did my best to ask her what I wasn’t sure about.

She said currently my tsh levels are surpressed. She said it looks as if my own thyroid is recovering and she cannot let me take levothyroxine if it’s not needed because I’d increased risk to heart problems , brittle bones etc.

I asked about antibodies and she said yes I do have raised levels ! I said would like not indicate it could be hashis. She said there is no way to determine if someone has hashis- she said it may indicate it but for now she feels it is post partum thyroiditis.

She said The only way to confirm hashis is to take a biopsy of The thyroid.

She said what I’m getting from 25mg is minimal and my body is only absorbing the tiniest amount to which I said well why can’t I stay on it for 8 weeks at least than fun the risk of going off it and slump to underactive.

I have two young children and just can’t afford to be dragging myself around all day trying to raise two children

I feel so anxious about it all

[greygoose in reply to Meggy222]

Oh my goodness! She's talking such utter rubbish! Post-partum thyroiditis doesn't last for over 4 years!

If you have high TPO antibodies, then you have Hashi's, and she can wiggle and squirm as much as she likes, that is the way it is. You do not need a biopsy of the thyroid to diagnose Hashi's! An ultrasound would confirm, but the important thing is the antibodies.

And it really doesn't matter if your TSH is suppressed. It is suppressed because you are taking thyroid hormone replacement, not because your thyroid is recovering! There's absolutely no hope of that happening!

So, you're only taking 25 mcg levo? Even if your thyroid were recovering, I can't see that tiny dose doing you any harm! It's rediculous. This endo is dangerous! You should ask for a second opinion, or something, but do not do as she says, because she has no idea what she's talking about. Can you talk to your GP? You should not be left to the mercies of this mad woman.

[Meggy222 in reply to greygoose]

Oh goodness what am I going to do ! I doubt my gp will go against what she is saying . I would imagine the gp will go on her recommendations as she is the ‘specialist’.

I’m really, really concerned and I don’t know what to do. Help!

What would you recommend? Should I demand an ultrasound ? Can you explain to me how that’ shows the likes of hashis? If I was to put that her I’d imagine she will have an answer as to why it doesn’t!

This is crazy!

Why is she so against the fact that this could be hashis... I don’t understand why she doesn’t want to even consider it ....

At a complete and utter loss at what to do

[greygoose in reply to Meggy222]

Well, I think the first thing to do is to at least talk to your GP. You never know, he might side with you. She's not a thyroid specialist, is she? She's more than likely a diabetes specialist - they usually are - and that's why they don't know much about thyroid. Try explaining that to him. And, ask for a second opinion. I think it is your legal right to have one.

And ultrasound will show up any damage done to the thyroid by the Hashi's. But, it may be better, when talking to doctors, to use the name 'Autoimmune Thyroiditis', as they don't like - or don't understand - the name 'Hashi's'.

And it's not just Hashi's they don't like diagnosing. They don't like diagnosing hypothyroidism, full stop! Quite why, I don't know. But, they are always very, very reluctant to diagnose hypo, and usually like your TSH to be over 10 before diagnosing, which is rediculous!

But, the thing is with Hashi's, they just don't understand it. And, possibly, they are afraid you will ask questions they can't answer, so prefer to just ignore it.

Or, you could just point blank refuse to stop your levo. Tell her that if she won't prescribe for you, you will self-treat. End of.

[Meggy222 in reply to greygoose]

Thank you - I’m hesitant to ask my gp as I know what she will say . I will though as I have no choice - here’s hoping she will try and see where I’m coming from. Do I have the right to ask for a second opinion? If I do, can I ask to be referred to a specialist? I live in northernireland- I wonder does anybody know anyone? Do I open a new post asking this?

I think I will keep taking what tablets I have left and in the meantime push for a referral.

I feel so out of control of my health, that I can’t trust anyone? It’s crazy!

[greygoose in reply to Meggy222]

You do have the right to ask for a second opinion, and you are going to have to be very forceful with your doctor. Stay calm and polite - no tears or tales of depression! - but let him know you will tolerate no fobbing off. You life is at stake!

It would be a good idea to write a new post asking if anyone knows of a decent endo near where you live.

And, also email this address and ask for the list of decent endos, to see if there's one near enough :

[e-mail]

[Meggy222 in reply to greygoose]

Thank you Grey goose! I will do my best to be firm ! No tears I promise lol thank you for your advice and support - it’s very much appreciated!

Regards

[greygoose in reply to Meggy222]

You're more than welcome. Don't forget to let us know how you get on.

[Angel_of_the_North]

No, don't stop it. Your endo is panicking because of low TSH (probably not a thyroid specialists), but your free T4 is is lower than it was previously. Can't advise without ranges - put them in your original post. In any case you should not drop levo or raise by more than 25mcg at a time. I suspect your free T3 was over range in November suggesting a Hashi flare, but you can't know without having TPO and TG antibodies tested.

[Meggy222 in reply to Angel_of_the_North]

That’s correct she’s not a thyroid specialist. Although she did say that high antibioties does not result in a diagnosis of hashis! And I currently do have antibodies which she didn’t even mention until I asked her was it tested and what did it show??

The ranges are in the original post

Thank you

[Angel_of_the_North in reply to Meggy222]

Well, if high TPO and TG antibodies don't mean autoimmune thyroiditis (Hashis) what do they mean? It is possible to have Hashis without high antibodies but usually a scan shows damage in that case. The antibodies in the case of Graves are different ones.

I think she is waffling out of her posterior as she doesn't really know what to do. NHS and a lot of private UK doctors don't care if you have antibodies or not because they don't treat the autoimmune condition, so, to them, it's irrelevant.

i would ask to stay on the same dose and retest in 8 weeks. There are no ranges for free T3 in your original post.