T3 Trial

[notpink]

Have had private endocrinologist appointment today. What a difference to the upsetting GP appointments. She's putting me on the T3 trial and writing to GP to instruct. Am so relieved to have her input and understanding. Hallelujah! Am so grateful to this forum, members and Thyroid UK, who share information so willingly.

[Coachgeorge]

Do you take T4? How much T3 is the trial? What are your symptoms?

[notpink in reply to Coachgeorge]

Have been on T4 since diagnosed in 2005 (currently 75 mcg). OK until 2018 - hair loss and various other symptoms. Had T4 reduced earlier this year, felt more unwell. Reinstated to 75 mcg at my request but symptoms continued including dizziness/ intolerant of heat, etc. But recent blood test revealed poor conversion. The endo is starting me on 10 mcg, split into 2 doses. I see GP next week, who should have her letter of which I will have a copy, so fingers crossed for that appointment!

[Coachgeorge in reply to notpink]

Best of luck

[SlowDragon Administrator]

Seeing an endocrinologist privately does not usually enable access to NHS prescription for T3

New NHS England Liothyronine guidelines July 2019

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

To get T3 on NHS you would need to be diagnosed as having clinical need by NHS endocrinologist (virtually impossible)

Is this private endo also an NHS endocrinologist? If so you can start T3 on private trial and transfer to NHS list for consultation...usually takes a few months

Private prescription enables access to cheap T3 from Germany. This needs to read

Liothyronine 20mcg x 100 tablets

Details on how to order here

thyroiduk.org.uk/tuk/treatm...

Did endocrinologist give you a prescription?

[notpink in reply to SlowDragon]

Thanks for your reply. What a minefield all this is! Thanks for the link about suppliers of T3. I'm gradually getting my head round all this. The Endo. I saw is sending me a letter + letter (copy to me) to GP. I saw her as a private patient, but she has an NHS base, where I presume she works for NHS also. Am a bit confused about all this, but no doubt will become clearer. Grateful for your explanation of T3 private trial and going on to NHS list for consultation. Should receive letter covering what I was told at the appointment this week. Thanks again for your help and links.

[SlowDragon Administrator in reply to notpink]

Clearly it's mainly about cost of T3 to NHS

Currently UK T3 is £206 for 28 tablets

German T3 is 31 Euro for 100 tablets

Media coverage of T3 debacle

mjauk.org/wp-content/upload...

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

[notpink in reply to SlowDragon]

Difficult to understand why this situation should exist. Thanks for info. and articles.

[DIYqueen in reply to SlowDragon]

Maybe that is why my liothyronine prescription was stopped. Although it was 5 years ago before this paper came out...

[SlowDragon Administrator in reply to DIYqueen]

Suggest you look into getting T3 reinstated

Your recent results show very low FT3

healthunlocked.com/thyroidu...

DIO2 gene test can be helpful......assuming you test positive

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

Takes about 3 weeks to get results

[DIYqueen in reply to SlowDragon]

Thanks slow dragon. Good idea but expensive! Especially as I would need the consultation (my GP would have a dicky-fit if that arrived for her).

[SlowDragon Administrator in reply to DIYqueen]

But, if you test positive for DIO2 and can then get T3 prescribed on NHS it's a good investment.

Yes, you would need to pay for the follow up counselling.

Several of us have been successful in using this route.

Obviously it's a gamble...you might not test positive

notpink .....Something to consider if GP won't prescribe

[DIYqueen in reply to SlowDragon]

Would a GP or an NHS endo accept the test as valid evidence of needing T3?

[notpink in reply to SlowDragon]

Been thinking about this test for some time an will certainly take that route if I hit the 'rocky road'. Thanks.

[hackman]

Hello notpink! I am new to this site and have not yet worked out how to pm someone.

I am currently trying to find a sympathetic endo and wondered if you would be so kind as to pm me with the details of who you are seeing (understand it is not a recommendation) to see if they are anywhere near my area?

Thank you so much in advance if you can

[TSH110 in reply to hackman]

Hit the icon of the person you want to pm this will take you to their profile and you will see a menu bar saying follow/message. Hit message to send your PM to that person.

Hope that helps 😉

[hackman in reply to TSH110]

Thank you!

[notpink in reply to TSH110]

Thanks for that - it does help.

[Pooka77]

Can i ask, how did you go about getting private consultation. Do you totally circumvent gp?

[SlowDragon Administrator in reply to Pooka77]

Thyroid UK has list of recommended thyroid specialists. Email Dionne

thyroiduk.org.uk/tuk/About_...

You would need to persuade GP to give you a referral to see an NHS endocrinologist

But you can choose to see an endocrinologist privately. They will often want a letter of referral from your GP. This is a formality, GP can't refuse a private consultation. Letter is just to provide some background information

ALWAYS recommended on here to get FULL Thyroid and vitamin testing BEFORE any consultation, but especially if paying for private one

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[humanbean in reply to SlowDragon]

But you can choose to see an endocrinologist privately. They will often want a letter of referral from your GP. This is a formality, GP can't refuse a private consultation. Letter is just to provide some background information

I'm afraid to say that GPs can and do refuse to make referrals for private consultations. I've read about it happening to other people, and it has happened to me. It was a long time ago now, so perhaps the rules have changed.

[SlowDragon Administrator in reply to humanbean]

I guess these days, if have access to your online medical record, you could circumvent GP and print that off instead

[notpink in reply to Pooka77]

SlowDragon has given you an excellent reply on how to go about getting a private consultation. I did initially ask my GP for a referral to an endocrinologist and suggested one on the list I had obtained from Dionne (Thyroid UK). She said she could only refer me to one in the practice area and he would have the same opinion as her.....that everything was fine!

[Pooka77]

I have been referred to endocrinologist by my gp but not sure what the wait is. Considering all options.

So are you saying that prior to the consultation I should have TSH, FT4, FT3, TPO and TG thyroid antibodies, vitamin D, folate, ferritin and B12? Is this recommended advice from a reliable source I can evidence to my gp?

Its so expensive to get the medichecks. If there was evidence to back me up maybe the gp might do them.

[notpink in reply to Pooka77]

I made sure all tests were up to date prior to Endo. consultation. Had GP test but assumed, as before, would only be TSH so had a medicheck test as well. Also had medicheck test for vitamin levels. Private consultation is expensive and I wanted to make sure no information was missed so, wrote all my results on a chart so they could clearly be seen and also typed up medical history.

[DIYqueen in reply to Pooka77]

I have tried numerous times to get FT3, TPO and TgAb done by GP as well as FT4 and TSH

GP asks, lab won't do them. So although you have to pay medichecks is cheapest I found. I got a special offer at £49. But you can get 10% off through ThyroidUK.

If you tell GP how run-down and tired you are all time it is quite standard to get vit D, ferratin, folate, iron especially if you ask.

[Miffie]

Unfortunately any private visit and subsequent recommendations need not be followed by any NHS staff. This is the case even if the consultant has both NHS and private clinics. I have had private treatment in an NHS setting just one week after a private consultation. As an NHS patient my GP had refused a referral although I was in a bad way. Had I been an NHS patient with the same consultant I would have had a very long wait.

At present our GPs are not able to prescribe T3 without a NHS recommendation from endo. Please let us know if you are given an NHS script from your GP. Good luck.

[notpink in reply to Miffie]

Thanks. Will let you know - did get the impression that it might by refused by GP, but worth a try.

[Breena]

Please can you p m me with the name of your consultant and where you are.

[LAHs]

Glad to here one more Endo has prescribed T3, it's like one more swallow flying back to Capistrano. Maybe if we wait long enough we will get to a Summer of T3 for all.

On the subject of the price of T3 you might want to get used to the idea of driving to Germany or wherever it is cheapest and closest. As I have written here many times, I have a 400 mile round trip to pick up my Armour NDT, I am not sure how that compares to a round trip from England, to Germany and back but it is worth it. I listen to books on CD if that helps.

[notpink in reply to LAHs]

Thanks for your comments. I came out of there ecstatic but the reality of obtaining T3 and maintaining supply is not straightforward. However I won't be driving to Germany! - at 74 it wouldn't be safe, even if I had the courage, and I'm in Scotland - a bittie further. Don't know where you're located, but that's some journey!

[LAHs in reply to notpink]

OK, no driving. I think some people on this site get the German T3 via mail somehow. Maybe one of them could PM you and tell you how they get it. I don't know the name of the manufacture off the top of my head but it's something like Thebon Herron (?????).

[LAHs in reply to notpink]

Sorry, driving to Germany from Scotland was a stupid suggestion it's nearly 1000miles one way. Do it via the mail.

[notpink in reply to LAHs]

Yes will probably do that. Endo said they obtain T3 from America and I could get it via them - she said it would cost about £90 per month. They guarantee the quality etc. The Germany T3 (thybon henning) is probably cheaper and I have saved info. on how to obtain that. Thanks for you help.

[Painti]

My daughter had a FNA performed on the right thyroid nodule. Clinical conclusion U3. Undetermined they said. So I am wondering what is going to happen next. She only 22. I am so stressed and worried.

[notpink in reply to Painti]

Hi - so sorry your worried and stressed about your daughter's FNA. I have no medical training, but perhaps you can make an appointment to see GP with your daughter and find out through that route. There is info on the internet about FNA, U3, but not always easily understood - best to talk to someone who knows. Take care.

[LAHs in reply to Painti]

I don't know if my humble opinion helps but I think "Undetermined" means that they missed the nodule. This might mean that it is very small (but you and they should know this from the ultrasound - you should have had one first so they could see what they were aiming for) or it might mean that the person who did the FNA was not very experienced. Don't stress or worry yet, what is probably going to happen next is that they try again.

[Painti in reply to LAHs]

Undetermined means atypia so like it's not benigh or cancer either.