My meeting with Endo predictable with some surprises

[Goldengirl01]

Hi, had my meeting, told him Iv never felt well on just thyroxine after my thyroidectomy and I would like to try t3 as a trial. Answer, you have t3 in your body.....I said yes but not much because I don’t convert well. He then said they are concerned also about variable t3 levels and the longer term effects on the bone and heart, I said that’s not been proved ( couldn’t find the paper that said that but I’m sure there is one) . He suggested I try 125mcg of thyroxine for 6 weeks (target tsh 0.1-0.3). on letter to gp he’s stated 0.1-0.5. He then continued saying if I want to try t3 then cut thyroxine to 75mcg and take t3 10mcg 3 times daily, I said no that’s a big jump I will take 5mcg twice a day and see how I go, oh,oh yes you can do that he said and promptly wrote in the letter to take 5mcg t3 3 times daily then asked how I can get 5mcg..........Er, I can cut 10 mcg in half. I asked why they continued to look at tsh ranges when everyone is different and his answer was “well that’s the thermometer”. I said but you all seem to treat pt’s Like a one fits all when we are all individuals, he said no, tsh can be low and be okay for some but that doesn’t suit everyone, well that’s true. I have to see him in 6 months, he wouldn’t give me a prescription he said they weren’t allowed to ,my gp can give me that.

Would anyone like to comment 😁

[SeasideSusie Remembering]

T3 has to be initiated by an endo with usually a 3 to 6 month trial. After that prescribing would be passed on to your GP if you are to stay on T3.

SlowDragon may be able to help further.

[Goldengirl01 in reply to SeasideSusie]

They don’t want to commit to prescribing, he’s passed the buck to me

[SeasideSusie Remembering in reply to Goldengirl01]

So is he telling you to source your own T3? And is this the GP or the endo?

[Goldengirl01 in reply to SeasideSusie]

The endo, and gp said don’t take t3 til u see endo

[SeasideSusie Remembering in reply to Goldengirl01]

So is he saying source your own T3?

[Goldengirl01 in reply to SeasideSusie]

Yep

[SeasideSusie Remembering in reply to SeasideSusie]

So if he's happy for you to take it, is he going to monitor you? Why isn't he giving you a prescription?

[Goldengirl01 in reply to SeasideSusie]

He won’t give me a prescription because he says he is not allowed to and as he said in the post re letter they don’t recommend t3 because of bones and heart . No, he wants to see me in 6 months but not monitoring me, he’s just leaving it to me to decide how I feel. He wants me to do Levo 125mcg first for 6 weeks.

[Goldengirl01 in reply to Goldengirl01]

I have an appt In January with another endo from Dionnes list so as it’s a woman I’m hoping she has more understanding. I didn’t mention this to the endo I last saw though, I just want to see what another would suggest.

[Goldengirl01 in reply to Goldengirl01]

Consultant also asked if I drank coffee as t3 gives the same buzz for a short while and they are not convinced t3 is good for you because good feelings come and go and they don’t know how long for..

[SeasideSusie Remembering in reply to Goldengirl01]

Geez, they come out with some garbage.

I've never had a buzz from coffee, but I'm not a coffee aficionado, and I don't get a buzz from T3. Maybe there's something wrong with me!

[Goldengirl01 in reply to SeasideSusie]

Haha no , there is something wrong with medics though.

[SlowDragon Administrator in reply to Goldengirl01]

Are you in England (rather than Wales/Scotland)

If in England Print out the guidelines and highlight, page 4 - box 2

If an NHS endocrinologist believes you have clinical need they should prescribe for initial 3 month trial. Assuming trial is successful, then endo writes to GP explaining that GP then takes over ongoing prescriptions, care and cost. With annual review back with endo

sps.nhs.uk/wp-content/uploa...

Please fill in the current Liothyronine thyroid survey ......your Endo is suggesting you have clinical need but won't prescribe ......directly against guidelines

healthunlocked.com/thyroidu...

[Goldengirl01 in reply to SlowDragon]

I took the RMOC paper with me and said about a trial and he wasn’t interested because they are not allowed to prescribe it where they are hence I have to try and get it elsewhere. He said there is no real proof t3 helps and can affect heart and bones.

[SlowDragon Administrator in reply to Goldengirl01]

Your endocrinologist is out of date. They can prescribe.

surreyandsussex.nhs.uk/wp-c...

Fill in that Liothyronine survey

Make an appointment see your (new?) MP once this election debacle is over

[Goldengirl01 in reply to SlowDragon]

Just done the survey. Even with taking paper from RMOC endo still refused saying no proof it works and not always good for pt as it can affect bones and heart.

[SlowDragon Administrator in reply to Goldengirl01]

Low FT3 can affect bones and heart too

We need the right amount.....not too much....not too little

Wearing a Fitbit can help demonstrate low heart rate

[Goldengirl01 in reply to SlowDragon]

My heart plays about, sometimes it’s rapid then slows right down, making me light headed and dizzy.

[Goldengirl01 in reply to SlowDragon]

Yes in England and took that very paper with me , he wasn’t interested and said if I knew how many people bring in papers all the time........well maybe they should start reading them then. Anyway he said point blank they are not allowed to prescribe t3 at this hospital and my gp surgery won’t do prescription for it so I have to try sourcing it myself.

[Angel_of_the_North in reply to SeasideSusie]

Quite. T3 at night makes me sleep better - what a Buzz!

[NWA6]

Morning Dustpan. Everyone has written good replies. My NHS endo said it was ‘dangerous’ so I’m living dangerously by getting it from a private Endo! Lol loving this ‘dangerous’ lifestyle ‘choice’ 😛

I just wanted to add that no way would I lower to 75mcg. I’d think about your FT4 range before I altered it. If it’s in range I’d consider keeping it as it is and then adding T3. 10mcg like you said.

[Goldengirl01 in reply to NWA6]

Hi there NWA6 I always thought you had to lower t4 by 25mcg before starting t3. Anyone else got any thoughts on this.x

[Goldengirl01 in reply to NWA6]

He wants 10mcg three times a day isn’t that rather high for first time?

[NWA6 in reply to Goldengirl01]

Yes it is always recommend to lower by 25mcg when introducing T3 but I don’t think that’s always necessary. So for example if my FT4 was settled at 17(12-22) then I think that is a good number (50%through range) to start T3 on, it shouldn’t be any lower than that. We don’t yet know all the benefits of T4 and trying to convert as naturallly as possible. For me taking T3 should be a ‘top up’ Even for me as a poor convertor I still want to maintain that process as much as possible. Lowering Levo dose is not optimal in many cases, I believe.

Keep the FT4 level and add T3. But no you don’t want to add 30mcg as your Endo suggested. You were right, add it slowly and build up to what you think you need based on how you feel. You could start at 5 or 10. I started at 15mcg per day divided into 3 but apparently that’s unusual and the fact that I had no adverse affects is unusual but then compared to what?? Who else has just added their full T3 dose? There doesn’t seem to be enough data to support any of what’s being advised so it’s ALL experimental.

[Goldengirl01 in reply to NWA6]

Thanks for that advice. The worrying thing is being able to continue getting t3 from Germany. One pharmacy said they would accept my prescription so sent it off and heard nothing since. Have ignored my emails as well so lost that prescription. Another had stopped delivering to Uk.

[NWA6 in reply to Goldengirl01]

Yes it is a worry getting it from Europe. I too get my Thybon from Germany. I justgii i t my last lot of 6mtjs supply in Sept/Oct with no problem. What pharmacy are you using?