Good news - I think?: Hello everyone. Had first... - Thyroid UK

Thyroid UK

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Good news - I think?

Stumpy57 profile image
15 Replies

Hello everyone.

Had first appointment with endo today. He listened and asked sensible questions. I went prepared to argue my case for T3 but he beat me to it. He thinks I don’t convert well enough, looked at my T4 & T3 numbers and totally dismissed my under range TSH - ‘not a useful guide for treatment’. Made me wonder whether he reads this forum!

I’m currently taking 125/150 levo. He suggested sticking to 125 daily and adding 10 of T3. Does that seem ok?

The down side to the consultation? T3 only available from hospital pharmacy - and they hadn’t got any! So, back tomorrow.

Thank you to all who have replied to previous queries and for other posts that have given me some insight into this strange illness.

The endo is on Louise’s list - Kingston Hospital.

15 Replies
Nanaedake profile image

Amazing result!

SlowDragon profile image

Good to hear he listened

Your previous post from 6 months ago shows terrible vitamin levels

Are these now improved. That's likely essential BEFORE starting T3.

As you have Hashimoto's are you on strictly gluten free diet? Or tried it?

Stumpy57 profile image
Stumpy57 in reply to SlowDragon

Thanks Slow Dragon. I have been G free for some time and feel much better for it. Antibodies have reduced and I haven't had any flares for a while. Vits have improved

thanks to advice from forum members. Will get tests done soon to see if I can reduce to maintenance doses.

SlowDragon profile image
SlowDragonAdministrator in reply to Stumpy57

Best to start on only 5mcg T3 for about a week, then add second 5mcg dose in afternoon.

Hold at that for 6 weeks before retesting

Can cut into 1/4's using sharp craft scalpel

Just like Levothyroxine, different brands of T3 are not the same. So sticking to same brand every time

Unless lactose intolerant, many don't get on with Teva brand

Morningside Healthcare brand is in nice blister packs. Mercury Pharma just loose in a pot.

Stumpy57 profile image

Thanks for that advice. Yes, will split dose initially. Endo did say that he might need to raise the dose to 2x10 later on but next appointment is in November.

Will keep an eye on brand, I had to return Teva levo as it made me feel most odd.

SlowDragon profile image
SlowDragonAdministrator in reply to Stumpy57

Teva upsets many, many people

shaws profile image

About time we had some positive news that endocrinologists are helpful and kind and more interested in returning patient to good health.

So refreshing to hear your good news.Your Endo sounds like a good one and I hope you are soon on the road to recovery.The addition of T3 made a difference to me and good vitamin levels important too. I wish you well again.

Rita-D profile image

That’s fantastic! An endo who listens, ignores TSH and prescribed T3! Rarer than hen’s teeth! May increase T3 too. What a result for you. Brilliant!

JAmanda profile image

Glad to read your good news.

I live in Kingston and am awaiting an endo appointment - are you allowed to share the name of yours on this forum?

Stumpy57 profile image
Stumpy57 in reply to JAmanda

Um.... I don't know. If an administrator says it's ok then I will. If not, I can PM you tomorrow when I'm more awake and can work out how to do it.

JAmanda profile image
JAmanda in reply to Stumpy57

Thanks - pm it is best I guess if you don’t mind.

AliF profile image

I see a Kingston endo and also have some T3. Still trying to get levels optimised though after 4 months and have different problems with T3. Mercury is the manufacturer. Got my next month’s yesterday. You have to keep going back to collect them in monthly batches and best to call them in advance to check they have them. They’ll give you a free pill cutter too.

LAHs profile image

Great news Stumpy. It is quite normal for a pharmacy not to stock T3. I live a very long way from my pharmacy and I once traveled my 200 miles just to find they didn't have any (It's NDT for me). Guess who now telephones to make sure they have it in stock or ask them to order it fast?

Stumpy57 profile image
Stumpy57 in reply to LAHs

Oh heavens, what a wasted journey for you. The hospital pharmacy told me to phone 7 days before I need to collect and I certainly will - even though it's only a fraction of your journey.

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