Dose of Levo lowered

[Lowestoft]

Hi, My GP lowered my thyroxine from 150mcg to 125 mcg as my TSH was 0.01 after the January blood test

My TSH has been low for years. There was no discussion about how I felt and no option to stay on 150mcg.

Results from Monitor my Health as GP refuses to test anything other than TSH!

Both tests done following protocol.

22/02/2024 On150 mcg thyroxine

TSH 0.01 (0.27-4.2)

T4 26.9 (12-22)

T3 5 (3.1-6.8)

Not feeling particularly lively.

1/07/24 On 125 mcg thyroxine.

TSH 0.01 - the same

T4 25.5 - lower but still above range.

T3 4.7 -lower

How can that make me feel better?

Maybe I need T3.

Gained 8 lbs and multiple symptoms have returned.

I have a blood test at doctors tomorrow at 9am (earliest appointment available.)

I’ve asked for a follow up appointment.None available either in person of on the phone. I’m worried that she will drop thyroxine again without consultation.

Any suggestions?

[TiggerMe Ambassador]

Very irritating how they act without discussion!

Time to request a referral, having your fT4 above range to become symptom free isn't a good long term option health wise and shows your need for a little T3

[Lowestoft in reply to TiggerMe]

Hi , it’s only the last 2 tests that have been over range T4.They say I’ll get bone loss but as I’ve never had it measured I’m not sure how they can check for loss. I was referred to Endo about 10-12 years ago. Hi specialism was Diabetes! Knew nothing about thyroid!

I’ll try again.Hopefully I can choose one .

Thanks.

[Sparklingsunshine in reply to Lowestoft]

I agree with Tigger, having an FT4 over range isnt a good idea, its been linked with cancer and dementia. I understand where you are coming from though, you clearly need a high FT4 to generate a less than impressive FT3, in other words a poor converter. I was in the same boat last year, I was taking 200mcgs of Levo.

My FT4 was very high, but still in range but my FT3 was middling at best. Try and ask for Thyroid UK list of T3 friendly Endos and see if any are on the NHS in your area. And try and avoid diabetes specialists 😆. Easier said than done.

[TiggerMe Ambassador in reply to Lowestoft]

Worth another try, mine too is hopefully more knowledgeable about diabetes as she ain't great but does prescribe T3 and we have agreed it is based on free T3 & 4 as my TSH left as soon as I started T3... worth choosing a T3 aware one if there is one in your area

She also spouts on about bone loss and heart issues but I don't qualify for a bone scan for another 4 years (unless I start chain smoking and abusing alcohol) I went to the Nuffield and had a private scan last year so at least I know the score and can monitor!

thyroiduk.org/contact-us/ge...

[Aardvark00]

hello Lowestoft,

I’m in Portugal and the only treatment here is Levo only, so I understand your issue keeping T4 high to get good T3.

That said, make sure all other issues are addressed with the blood work. Keep the vitamin d, B12, folate, and ferritin in good ranges.

At least doctors here ask how you are feeling, and the do no harm part applies. I’ve resorted to managing my meds to get results I can live with….. good luck

[arTistapple in reply to Aardvark00]

High FT4 does not guarantee good levels of T3. I can definitely attest to that. The higher my FT4 the lower my FT3. Thyroid Patients Canada do good work untangling this myth, i.e. not for everyone.

[Aardvark00 in reply to arTistapple]

Originally from US, I was on perfect dose of NDT. All was good before retiring to Portugal to find out only Levo here. (As well as Spain and France)

With a decent doctor, we have at least been able to get a dose that so far is working. Making situations more complicated, I don’t have a thyroid anymore.