'T3 will make me worse' - the view of an endocrinologist who has never seen me!

[terri_b]

When I saw my GP a month ago he agreed to refer me to an endocrinologist after I told him I wanted to try adding T3 to levo (he would have prescribed himself but but it was outside his expertise) and he dictated the letter while I was there.

As I received a letter from the surgery saying that this doctor had now left the practice I called them yesterday to ask if the letter had been sent as I hadn't heard anything, yes it had and I was told to ring the hospital to ask about the appointment.

Before I got round to doing that, the new replacement GP telephoned with a reply from the endocrinologist who stated that ' T3 would make me worse'!

It was also advised that I reduce my levo from 175 mcg daily to 150mcg. WRONG! I take 100mcg/75mcg on alternate days.

So an endo who won't see me is making suggestions on dosage notes that are incorrect.

I despair😡😞

[bluebug]

You need to say something about the letter in your notes as other doctors will act of it.

[bellk]

Ask to be referred to a different endocrinologist. If you are anywhere Newcastle try Dr J at the Royal Victoria Infirmary, if he is still there( it is years since I have been). He listens to patients' judgements on how they are.

[Dee188 in reply to bellk]

If its Dr James he is still listed at RVI.

[terri_b in reply to bellk]

Thanks for info bellk but I'm on the south coast near Portsmouth so if need be I'll do a bit of searching locally.

[Clutter]

Terri_b,

The endo can't possibly know whether T3 will make you feel better or worse. No-one knows that until you try it. NHS England is trying to stop the prescribing of T3 so if that's your only reason for seeing an endo you may not be successful.

What are your recent thyroid results and ranges?

[terri_b in reply to Clutter]

Hi Clutter

Most recent results from 14 Feb are:

THS: 0.105 (0.270-4.200)

Free T4: 22.04 (12.0-22.0)

Free T3: 4.9 (3.1-6.8)

Thyroid peroxidase antibodies: negative (<60)

Vit D: 65.6 (25 - 75nmol/L borderline ranging to insufficiency)

Vit B12: 18.5 (3.9-26.8)

Since receiving these results I reduced my levo from 100mcg daily to 100/75mcg on alternate days and am feeling better, palpitations just about gone and far less anxiety.

I have been taking Vit d and b12 and also magnesium as I thought that would help with the anxiety.

The request to see an endo was back in February when I was feeling unwell, but as things have improved I'm thinking it's not worth taking further, as you rightly say, I will probably be unsuccessful anyway. I'm just annoyed by the incorrect medication notes being held by the surgery and the possibility that I wasn't going to be told I wouldn't get an appointment with the endo.

Anyway I will be getting repeat blood tests shortly to check for any changes since I lowered my dosage and will then see the new GP and make sure they have the right medication information. If I still feel the need to try T3 at any time I know I can do that for myself.

[Clutter in reply to terri_b]

Terri-b,

You weren't biochemically over medicated on 100mcg but you won't be under medicated on 75/100mcg. FT3 4.9 isn't low so you might not feel any better if you added T3 and would need to reduce Levothyroxine dose to avoid over medication.

VitD 65 is sub optimal. Either soak up some sun on your face and arms a few hours each week or supplement 1,000iu D3 daily. VitD should be taken 4 hours away from Levothyroxine.

I think you've given a folate result and range instead of B12.

[terri_b in reply to Clutter]

Thank you for that Clutter and yes, wrong b12 result! Should be: 432 (191-663).

I am taking sublingual methyl cobalamin.

Time to try and relax now and wait for the sun to come back out!

Thanks again.

[Angel_of_the_North]

Not an endo you want to see. You need to tell the GP and/or practice manager that the endo seems to have confused you with another patient (as dose etc info all wrong)

[Glynisrose]

Ignorebthis ignoramous.