FT3

[janer560]

My doctor refused to test my FT3 so I had it done privately. I told the doctor and said I would bring the results to show her, But she said it wouldn't make any difference because she would only give the same treatment anyway! Apparently they NEVER give T3.So now what?

[PinkNinja]

You could ask for a referral to an Endocrinologist or are a different GP. They are allowed to prescribe t3 but they don't because of the cost and the propaganda about it. Some Endocrinologist will prescribe but others won't.

If you are in a position to see a private doctor, Louise Warvill will be able to send you a list of good ones that thyroid uk currently know of. Email her on [e-mail]

I hope you get somewhere with this.

Carolyn x

[janer560 in reply to PinkNinja]

Hi Carolyn, thanks for the reply. I did ask to be referred to an endo but the doctor said they wouldnt see me because my TSH is back in range now (its 0.12 now).I think it might be time to change my GP. How do I know who to choose though? Can I ring around the surgeries and ask, and who is the best?

I did get the list from Louise but there's no-one anywhere near me. I live in devon.

[PinkNinja in reply to janer560]

You could ask local pharmacies if they supply prescriptions of t3 to anyone currently. If they do, you could ask which doctor. They may or may not tell you.

If you are asking for a private referral, the GP should have no objection. You could also post asking if any members here know of a good endo in Devon.

[deniD in reply to janer560]

We need list of good doctors and endos in all areas ! I'd of went too but none close to me either x

[PinkNinja in reply to deniD]

Unfortunately the list that thyroid uk has is compiled from information from patients. If you do find a good one on your area please let us know so they can be added to the list.

A list of endos in all areas would be great!

[Hidden]

It should be difficult to believe that a Dr could be so closed-minded in this age of evidence-based medicine, but it isn't. If the Endo route fails, you could consider purchasing your own T3.

[janer560 in reply to Hidden]

Yes Hypnoteq, I might have to do that in the end, but really I'd like some guidance on it all. Its all so confusing to me. My brain is totally fuddled and its difficult to think straight. So exhausted, I need help with sorting it all out really.The doctor is useless!

[HarryE in reply to janer560]

These thing is, if you aren't dealing with the other things like iron, b12 and so on, taking t3 might not help. It isn't a magic bullet sadly. You might find that, with better levels of other things, you convert your Levo much better anyway.

[Hidden]

This is scandalous.Are the NHS abdicating their responsibility for our health?

We know that if T4 is not converting to T3 then we are not going to get well.Perhaps every GP should have a copy of Dr.Antony Toft's book ( £4.99in chemists )put on their desks.

I was fortunate that I learned a lot from joining TUK and asked many questions of my GP which resulted in me being sent to an endocrinologist who tested for FT3 and then prescribed T3 from the Hospital Pharmacy with a repeat prescription which has since been given by my GP( though he did remark on the cost I must confess)

It seems I was one of the lucky ones,but it should not be this way.

The NHS should be looking after everyone's Thyroids.

I shall ask again " When are they going to acknowledge the importance of this tiny pea sized gland and start making sure that everyone's Thyroid is working to OPTIMAL level in order to help avoid the development of other conditions....diabetes.....overweight and obesity problems that they're now concerned about" ? If they are out to save money then perhaps they should get the basics right to start with.

[janer560 in reply to Hidden]

Sounds like you WERE lucky Marfit! I cant even get referred to an endo.

[Hidden in reply to janer560]

It took a long time for me to get to that point.My GP always said there was nothing wrong with my thyroid even though I was lacking energy,losing motivation,had aching muscles,gave up my art group sessions because I couldn't cope and gradually started backing out of social commitments.

It wasn't until I joined this group a year ago and posted my TSH result which was 4.08( 0.35 - 5.5) which was regarded as too high and probably why I wasn't feeling well+ had been on only 50mcgs Levo for over 10 years that I began to be more assertive.I went to my GP and asked for a rise in Levo saying that if he left me for another year I'd probably be out of the top of the range.

This was a turning point and he started listening.He arranged for me to have Vits B12,Folate and Vit D done ( as advised by this group).I later made him aware that I had joined Thyroid UK so that I could get more information about thyroid matters.

It was when I started talking about the conversion of T4 to T 3 that he said .....Don't go down that road .....You'll lose me.

I think that was when he realised he needed to pass me over to an Endo. I picked up on someone here asking for a good Endo in Essex and asked if I too could have the information which was from another member.

When my GP then said he thought I should see an Endo I requested the one recommended and was fortunate that my GP knew him and could refer me to him.You can imagine I was asking myself why this couldn't have happened years ago as the Endo is very highly regarded and had a clinic at our local NHS hospital!!!!!

So that is how I gradually arrived at where I am at the moment.

I think if you gather all the information here that you can.....do some reading ...........keep lots of notes in a notebook that you can refer to and start asking all the relevant questions of your GP( I always do this without being rude or disrespectful ) then I think eventually you can get what you need.

.Ask him why GPs won't do an FT4/ FT3 test when apparently it is so important to know whether your T4 is converting to T3? Tell him that you have become aware that T4 needs to convert to T3 or else it could be floating around your bloodstream doing nothing,which is bad.

How can you hope to feel good if your thyroid is not working to optimal level because we don't have the fullest of information.

I'm afraid we have to keep pushing.....and for me it has been a busy year.......but we are lucky we have TUK to help us ..Good Luck.x ....PS sorry this is a bit of a long reply.....hope you haven't gone to sleep ! x

[janer560 in reply to Hidden]

Yes I will start a notebook, good idea!

[deniD in reply to Hidden]

Disgrace some can class themselves lucky good treatment should be available to everyone it's disgusting! X

[janer560 in reply to deniD]

Too right it is.

[Fruitandnutcase]

Exactly what I was ranting on about yesterday. As long as you fit within 'the range' it doesn't seem to matter whether your body is working are at your optimal level - or someone else's. Short term savings like you say Marfit.

[Hidden]

May be our GPs need asking a question .....If everyone's Thyroid problems are quickly solved by a TSH test and some Levothyroxine tablets,why are thousands of their patients subscribing to Thyroid Support Groups ?

Why do they suppose that HU TUK's membership is growing by the thousand each month and we are eternally grateful that they are there for us.

I hate to think what the outcome would have been for the many patients left undiagnosed or under treated for decades because of the NHS guidelines used,if they hadn't found Thyroid UK and Health Unlocked.

[PinkNinja in reply to Hidden]

Totally agree! I'd still be on disability benefits and be a regular nutcase to boot if I hadn't found thyroid uk! Finding thyroid uk has literally given me a new lease on life!

[HarryE]

Jane, sorry it didn't get the result you wanted. As for what next, I think you will have to take it into your own hands - get copies of all your results, your iron, B12, anything else you have had tested, or get them tested if you haven't already. Make sure all those are where they should be with supplements, then maybe your medication will work better. If that doesn't work & you still feel you need T3, get some & try it, carefully & slowly. Keep a diary of symptoms, results, supplements, medication doses etc. Unfortunately, no-one is going to do it for you. Good luck

[janer560 in reply to HarryE]

Oh Harry, I am so down. Sometimes I wonder wether its worth carrying on at all. I'm still at work but each day is longer than the last and I dont know if I can keep going much longer.Sorry To dump on you. I am going to ring another doctor right now and see where that goes.

Dont feel I can cope on my own.

Thanks for your reply, meams so much. Jane

[Hidden in reply to janer560]

Harry is spot on there, janer560.

I was very ill after about 28 yrs of the T4 wonder drug (not) and by pure chance, because I was trying to get the landlord of my son's student digs to sort out the problems in the house, I started liaising with another of the mothers - and guess what, she introduced me to T3. I was so lucky that fate brought us together because she introduced me to Dr Peatfield and gave me all the info and photographic evidence that I needed to force (and I'm using that word accurately here because it was definitely a locking of horns) my GP to prescribe T3. I was single, self-employed and ill, but having that lady in my life albeit we never met, just like here, enabled me to improve my health - DESPITE my GPs attempts to keep me unwell. I am not anywhere near perfect on T3/4 combo and with help from here, have bought NDT online and am intending to convert next month when all my private blood tests are back from India. So take heart, you have the support here, and a fantastic virtual library of knowledge and personal experience in the heads of people here. You can do it

[janer560 in reply to Hidden]

Thanks Hypnoteq.x

[HarryE in reply to janer560]

I know, and it's so unfair that we have to do it ourselves, but it works. I just followed all the steps, one by one, and went from 4 months off work, barely able to stand, to being back at work and able to walk 12 miles as I used to. It is possible, just take it one step at a time, and stick to it. Like your iron for example, you need to be taking a big dose, every day, without fail. Give it your all, it will work. And if you have to treat yourself, you will have gained the confidence and you will be able to show the damn doctor!!

[janer560 in reply to HarryE]

Yes I will.

[PinkNinja in reply to janer560]

It really can get better. Keep fighting and we'll help you get there. I used to be a right mess but you should see me now! Working full time, volunteering on here, training to be a karate instructor and generally living my life again.

There is always hope.

Carolyn x

[janer560 in reply to PinkNinja]

Thanks Carolyn. x

[janer560]

Thank you all SO much. I dont think I could take another step without all the help I get from here. Have bought some iron today with B12. I'll try and be more positive and I'll post to try and find a good endo to see pivately.

Thank you for keeping me going xxxxxxxxxxxx

[HarryE in reply to janer560]

It's hard work, I can't say it isn't, but you can do it xx

[deniD]

Keeping us unwell ends up costing more money but the drug companies have a life long customer in everyone of us who doesn't feel well generating more money !