Dr Toft on high T4: Hey grey goose this is the... - Thyroid UK

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Dr Toft on high T4

MMAndrea52 profile image
20 Replies

Hey grey goose this is the article I was on a bout

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MMAndrea52
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SlowDragon profile image
SlowDragonAdministrator

I have tagged greygoose

This article is often quoted on here

Professor Toft recent article saying, T3 may be necessary for many. Otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

MMAndrea52 profile image
MMAndrea52 in reply toSlowDragon

Yes but my endo has insisted I lower my levythroxine because I had high T4 and suppressed TSH even tho I felt well. Yesterday he’s insisted I stay on 75 even tho iv told him I’m now colder, constipated, aching joints and muscles and absolutely no get up and go.

greygoose profile image
greygoose in reply toMMAndrea52

But, as I said before, your endo is pretty ignorant. He doesn't understand how to treat hypothyroidism. He doesn't appear to understand anything about thyroid. It's your endo that is wrong, not the rest of us. :)

MMAndrea52 profile image
MMAndrea52 in reply togreygoose

I know that grey goose. Thing is I’m stuck now on this low dose of 75mcg till me next appointment in May, tho I intend to email these findings to his secretary first thing Monday morning.

greygoose profile image
greygoose in reply toMMAndrea52

Well, as I see it, you have three choices: a) find a new endo that knows something about thyroid; b) self-treat; c) continue to suffer at the hands of this… person. I don't know what else there is to say. He doesn't sound as if he's open to reasoning of any kind. Although, having said that, you might find the discussion on this thread, between Hidden and holyshedballs , on the ethics of the doctor/patient relationship, of some interest:

healthunlocked.com/thyroidu...

MMAndrea52 profile image
MMAndrea52 in reply togreygoose

Well I’m in bed it’s took me all my time to get up and put some alpen in a bowl. Im back in bed now. I’ll email the endo. Wait for a reply then decide what to do. One thing I know if it stays like this never mind get worse I can’t go on. I’ll send the report and suggest he lets me higher my dose slightly, rather do it slow than too much. What would you say a sensible increase would be? I was thinking just a quarter of a 25 tablet or half of a 12.5 tablet. Give it 6 weeks then see how I am. Thanks I’ll read that article.

jgelliss profile image
jgelliss in reply togreygoose

AMEN !!!! To That . So Well Said …. Thank You .

greygoose profile image
greygoose in reply tojgelliss

Thank you, jgelliss. :)

jgelliss profile image
jgelliss in reply togreygoose

I admire the way you get straight to the point and say it like it is .

Thank You greygoose .

SlowDragon profile image
SlowDragonAdministrator

Previous post says you are on Teva brand of Levothyroxine. Many, many people find Teva is terrible

Have you now changed to a different brand? Certainly worth a try

Your FT3 is far too low on current dose, it will get even worse on lower dose

You are very poor converter

You're probably going to need the addition of small dose of T3

Your endo is likely only a Diabetes specialist

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

Roughly where in the UK are you, some CCG area are worse than others

You might consider getting DIO2 gene test

This can help get T3 prescribed

Medically recognised test including compulsory counselling

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

Wider DNA test

Educational only, as no counselling

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

MMAndrea52 profile image
MMAndrea52 in reply toSlowDragon

I am in Preston. My endo won’t entertain T3. Yes I’m definitely deteriorating as the days go by. I’m bed now, can’t get up out my bed. I haven’t the energy to look for donnas email and ask for list of Endos atm thanks anyway

MMAndrea52 profile image
MMAndrea52 in reply toSlowDragon

By the way no I’m still on teva but don’t think that’s the problem somehow

SlowDragon profile image
SlowDragonAdministrator in reply toMMAndrea52

Teva upsets thousands

You won't know if you don't try a different brand

Have you only ever been on Teva?

An average Diabetes endo is never going to agree to T3. They don't understand the problem

Here's Dionne's email - contact her on Monday

tukadmin@thyroiduk.org

Preston is a very low in number of T3 prescriptions

openprescribing.net/analyse...

So you will almost certainly need to see a recommended endocrinologist privately to get a T3 prescription

MMAndrea52 profile image
MMAndrea52 in reply toSlowDragon

Thank you. I’ll email Donna on Monday. I really am feeling very weak today. Hopefully it’s just cos I had a day at the hospital yesterday and I’ll be ok tomorrow. Thanks for that slow dragon. Yes iv only ever been on teva.

SlowDragon profile image
SlowDragonAdministrator in reply toMMAndrea52

Unless you are gluten intolerant it's best to change to a different brand

Activis or Wockhart or Mercury Pharma are all popular ones

in reply toMMAndrea52

Jumping in here. Please just give another brand besides Teva a try. You'll be doing yourself a favor. Best to know. If Teva turns out not to be a problem for you all well and good.

But there is so much documentation about problems with Teva on this site alone it would be terrible not to find out and correct this part of your problem puzzle,

Concerned. irina

MMAndrea52 profile image
MMAndrea52 in reply to

Thank you. I did mention about teva to my endo he looked at me like I was making things up and being silly he shrugged me off. Shall I just change brands while I’m on this 75 then?

in reply toMMAndrea52

I would. We don't have to accept the brand offered by the pharmacy even if they say they have nothing else, we have to, or whatever.

I would consider doing 2 things. Call ahead to say you are bringing in your prescription and will not accept Teva. If told that's all they stock tell them you will wait for them to get another brand in.Or go elsewhere.

Often pharmacies will have 2 brands available but will try to push the cheaper one (for them) off on the customer.

Believe me you are not the only customer refusing certain brands.

And second, always check what brand they are giving you before you step away from the counter. It is supposed to be on the container. Here (in the US) once we walk away from the counter with our med we cannot return it and have no recourse if there is a problem. It's federal law.

I always ask to look at my prescriptions even before I pay. I don't just look at the bag or the accompanying info papers stapled to the outside but check the actual bottles myself to be sure everything is correct: right med, right dose, right directions, you get the picture. If they start to ring it up I politely remind them I want to check my bottles before they do. I also don't give them my card or money before I'm satisfied everything is correct.

Better to be a tough customer than get incorrect meds. It happens more often than we think. Nothing like getting home, opening our bag and discovering our prescription is incorrect.

SlowDragon profile image
SlowDragonAdministrator in reply toMMAndrea52

Posts about Teva

healthunlocked.com/search/p...

vocalEK profile image
vocalEK

I was unable to track down the source of your excerpt above, mainly because thyroiduk.org.uk does not have a search option that I could find. In doing a Google search, I did come across this: endocrine-abstracts.org/ea/...

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