Too much thyroxine: I’m now showing signs of too... - Thyroid UK

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Too much thyroxine

flo-jo100
flo-jo100
41 Replies

I’m now showing signs of too much thyroxine now. I saw endo this morning so he’s told me to drop dose to 100 mcg from 125 mcg. I’ve never felt good on thyroxine so I’ve asked for an alternative he wants to do a t3 trial through the nhs but I can’t see that happening! Not quite sure why he wants the trial as I wouldn’t be able to afford it which I did tell him and I’m sure the nhs won’t fund it. I think my only option now is NDT .

41 Replies
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SeasideSusie
SeasideSusieAdministrator

What are the results that show you are overmedicated?

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flo-jo100

Sorry I replied to myself!

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flo-jo100

Well that’s just it the results are from 2 weeks ago so they’re probably slightly different now

Tsh 0.09 (0.35-5.00)

Free t3 4 (2.30-5.10)

Free t4 19.3 (9-22)

I’m having terrible sweats, insomnia, palpitations, racing heart, head buzz, eyes have sunken into my head. Agitated, anxious, angry, and very emotional! Not sure what to do next, I think my endo is struggling

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SeasideSusie
SeasideSusieAdministrator
in reply to flo-jo100

Well your results don't indicate overmedication. TSH is irrelevant as you're taking replacement thyroid hormone (although doctors disagree with that statement), but your FT4 and FT3 are well within range.

Do you take any other medication that might cause these symptoms as aide effects?

Have you had your brand of Levo changed and these symptoms come on since the brand change?

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flo-jo100

No I’ve always been on the same brand. All I’m taking is vit d, k, b complex and a probiotic plus a food enzyme when I eat to help me digest.

Mind you the 100 mcg is a different brand to the 25mcg. But I’ve been taking both for awhile

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SeasideSusie
SeasideSusieAdministrator
in reply to flo-jo100

Can you pinpoint when those symptoms started?

Have you had adrenal saliva test done?

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flo-jo100

I’ve been getting worse over the last week also my emotions are all over the place. He did adrenal blood test last August and 24 hour cortisol urine test and all was fine but I was thinking of doing the saliva test myself through medichecks as I believe it’s more accurate. I’m not dealing very well with stress either

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SeasideSusie
SeasideSusieAdministrator
in reply to flo-jo100

Don't bother with the Medichecks adrenal test, it only does Cortisol and for a full picture you need DHEA as well as cortisol.

Look at Regenerus thyroiduk.org.uk/tuk/testin...

Or Genova

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

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flo-jo100

Ok thank you so much

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greygoose
greygoose
in reply to flo-jo100

Your conversion is poor. That's probably why your endo wants to trial T. And could be the cause of your symptoms. Would you not consider buy your T on-line?

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flo-jo100
flo-jo100
in reply to greygoose

Im too scared to self medicate. I asked him if he could add t3 to the thyroxine but he said it wouldn’t help me.

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greygoose
greygoose
in reply to flo-jo100

Who said that? Your GP? GPs know nothing about it. But, if your endo suggested the T3 trial, surely he would monitor you if you bought your own, no?

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flo-jo100
flo-jo100
in reply to greygoose

My endo said adding t3 to my thyroxine wouldn’t help so how will just t3 work? I don’t understand what he’s doing! I think I’d prefer to go on NDT I’ve never really felt good on levo

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greygoose
greygoose
in reply to flo-jo100

You've never felt good on levo because you can't convert it. But, I thought you said your endo suggested a trial of T3, no? Surely he meant T3 added to your levo, not T3 only.

But, I'm afraid he's talking rot saying that T3 wouldn't help you. He obviously doesn't know much about thyroid. T3 is the active hormone. T4 (levo) is the storage hormone. How could T3 not help you? I'm not sure he understands what he's doing himself! Next time you see him, ask him to explain his plan in detail. He should have done that, anyway. He shouldn't just leave his patients in the dark and treat them like lab rats!

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flo-jo100
flo-jo100
in reply to greygoose

I’m pretty sure he meant t3 only because of his comment. I wasn’t very well when I saw him but I’ll email him tomorrow and get him to clarify. I take it t3 only is not a good idea

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greygoose
greygoose
in reply to flo-jo100

It can be a splendid idea, but rather unusual for an endo to suggest it. I think it would be a good idea to email him.

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flo-jo100
flo-jo100
in reply to greygoose

Thank you I’ll let you know what he says

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greygoose
greygoose
in reply to flo-jo100

ok :)

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flo-jo100
flo-jo100
in reply to greygoose

Hi again when you said my t3 was low how high should it be? Does that mean I’m not converting properly. Although my endo is trying to do a t3 trial he did say to me he thought my t3 was fine and it wouldn’t help. I think I might need to find another endo

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greygoose
greygoose
in reply to flo-jo100

The problem with endos is they don't understand the difference between healthy people and hypos! That might sound like a strange thing to say, but what I mean is, they don't realise we have different needs. Your FT3 is just over mid-range, and that would be fine for someone who isn't hypo, but when you are on thyroid hormone replacement, you need more than someone who is getting their hormone normally, from their thyroids. Most people on thyroid hormone replacement, of whatever kind, need their FT3 up the top of the range to feel well. We're all different, of course, and some might feel well on a lower level. But, in general, they need it higher, rather than lower.

Your FT4, on the other hand, is nearer the top of the range, so that means your conversion isn't brilliant - not the worst I've seen, but could be better. Did you find out if he meant T3 only or T3+T4?

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flo-jo100
flo-jo100
in reply to greygoose

I’m still waiting for a reply! I’ll let you know what he says

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greygoose
greygoose
in reply to flo-jo100

OK :)

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flo-jo100
flo-jo100
in reply to greygoose

Hi again, the clinic letter has finally come through. He’s trying for a T3 only trial!

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greygoose
greygoose
in reply to flo-jo100

OK, well, see how that goes. !)

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flo-jo100
flo-jo100
in reply to greygoose

I think I might go 2nd opinion nhs will never fund it and I can’t afford it would rather try NDT I think

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greygoose
greygoose
in reply to flo-jo100

Fair enough. Seems a bit extreme, anyway. If it were me, I would have at least tried T4/T3 before going T3 only.

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flo-jo100
flo-jo100
in reply to flo-jo100

I agree! That’s what I asked for he said he didn’t think it would help!

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Huddy1234
Huddy1234
in reply to flo-jo100

Hi Flo-Jo100,

Just reading through your messages - I am only on 25mcg and increased to 50mcg back in June and suffered exactly the same side effects as you, really horrible!

The sweats (day and night), insomnia like never before, anxious, emotional, stressed, low mood!!

Dropped back to 25mcg and all the above subsided...... I've now been referred to an endo and see him Saturday, was very thorough and done bloods done same day and know some of them I've never been tested before.

He asked me to increase my levo back to 50mcg just for one day this week and see if I feel any different - I've taken this morning so shall see the outcome.

It's a long old road trying to feel myself again - for me the tiredness, fatigue is the biggest symptom.

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flo-jo100
flo-jo100
in reply to Huddy1234

Hi since then I had to go on to NDT I couldn’t tolerate thyroxine. But still not there yet yes it is a long road!

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Huddy1234
Huddy1234
in reply to flo-jo100

Does your doctor prescribe this NDT? I know you say you're not there yet but does this help you any better?

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flo-jo100
flo-jo100
in reply to Huddy1234

No I’ve had to go privately. I’m not feeling better yet but I’m not on the right dosage yet it’s a slow process.

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Huddy1234
Huddy1234
in reply to flo-jo100

I've recently gone private too (through a work benefit) I'm seeing my endo this Saturday for results from blood tests I had last weekend - I wonder if he'll mention NDT?

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flo-jo100
flo-jo100
in reply to Huddy1234

Most want to exhaust all routes before they consider NDT. How long have you been on thyroxine?

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Huddy1234
Huddy1234
in reply to flo-jo100

Been on 25mcg (almost 3 years) and increased to 50mcg back in June and suffered really horrible side effects.

Hot sweats (day and night), insomnia like never before, anxious, emotional, stressed, low mood!!

Dropped back to 25mcg and all the above subsided...... will await Saturday to see what my latest blood tests reveal

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flo-jo100
flo-jo100
in reply to Huddy1234

Yes then maybe ask about NDT good luck

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SlowDragon
SlowDragonAdministrator

Your results don't show over medication

FT3 is low and FT4 in range

Presumably you have Hashimoto's as you mentioned high antibodies in a previous post

Are you on strictly gluten free diet?

Have you had vitamin D, B12, folate and ferritin tested. Essential these are optimal. They need regular testing

You also mention different brands of. Levothyroxine? Which brands. Many people react really badly to Teva

T3 is usually started as 3 months trial under care (and cost) of NHS endo. Then, assuming it helps, care is transferred to your GP.

It is still perfectly possible to be prescribed T3 on NHS, under NHS endocrinologist diagnosis.

If your CCG refuses to fund then you can fight your case via your MP

See Improve Thyroid Treatment campaign on Facebook for very helpful info pack and letter templates

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flo-jo100

Hi from my last bloods you said I’m not converting properly

T3 4 (2.30-510)

T4 0.09

Where should my T3 be ?

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flo-jo100

No my antibodies are fine not got hashimotos. The problem is my endo is not with nhs.

B12 418 (200-910)

Vit D - 131 (50-200)

I’ve ordered some b12 lozenges. Haven’t got folate and ferritin to hand but we’re tested recently and ok

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SlowDragon
SlowDragonAdministrator
in reply to flo-jo100

Then you will need private prescription if you want T3.

It's cheap from Germany or France £25-£30 for 100 x 20mcg available on prescription only

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flo-jo100

Finally got diagnosed with hashimotos. I wasn’t happy with my endo so found a new one. She’s put me on NDT as I felt so rough on thyroxine only day 3 so early days yet. I’ve gone gluten free but I’m struggling to keep weight on and this was before I started the NDT. I picked up a tummy virus a month ago seems to be since then. Can people with hashimotos struggle with under weight?

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SlowDragon
SlowDragonAdministrator
in reply to flo-jo100

Yes, it's not as common as gaining weight

But it's not that rare either

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