HI this is along rant so i am sorry if i go on a bit.
I am boiling mad after years of feeling like death you all know what that feels' like being given every tablet under the sun along with thyroxine, anti depressants' pain killers' for fibromyalgia and other shite of crap doctors' going back and forward to see a endo and paying for t3 myself, i after much pleading got the endo i was seeing in mancheaster [nhs] hospital to prescribe t3 in may of this year i was taking,
50mg thyroxine
5mcg of t3 2in the morning 2 at late dinner time and 1 round about tea time. [total 25 mcg]
i have not felt this god in a long long time, still get the odd bad days' but feel life worth living again.
on the 28th sept 2014 went along for my appointment with endo only to be told she had left and i was, going to be seeing another doctor who was male fair enough i thought boy was i wrong,
He never even asked how i was feeling just wanted to know what i was doing on t3 , i knew then i had a fight on my hands' explained the situation to him and how well i had been feeling since being on t3,
well he was having none of it, asked if i had had my bloods; done told him i had them done by gp 22nd sept, thats' when all hell broke loose my results' were
T3 6.9 ABOVE RANGE
T4 7.9 BELOW RANGE
AND SLIGHTLY SUPRESSED TSH AT 0.04
HE told me that i needed to come of t3 that i should never have been given it kept going on about findings in canada linking t3 to osteoporosis and cardiovascular risk and the long term harm full effects'
i told him i had been really unwell and had been in bed most days'
he said that it was just my age i told him he only wanted me off t3 because of the cost and that i had also read up on my illness oh he said doctor peatfeild he made alot of money out of people;
then came the battle i gave as good as i got. at the end he just said that when the green paper comes' out
about t3 no doctors' gps or other wise will be able to prescribe it i told him i will fight to stay on t3,
there is no way i am going back to how i was for over five years'
he has now sent my gp a lettter reducing my t3 to 5mcg 4 times' a day and increasing t4 to 75mg
He also wrote i will not suppress her tsh long term and would not support a regimen that did so.
I feel that if i had not fought my corner he would have taken me of it all together i came out of there shaking i have to see him in four months' time i dont' know if i could go through that again., and now my gp wants' to see me she never wanted me to have t3 in the first place , i keep waking up thinking what will i do if they take me of t3 any advice please should i change? endo.
He told me that there are a lot of endos' now who wont' prescribe t3 he really was a bully.
i really need your help.
Take care [sorry for the long post]
ms polly
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Written by
mspolly
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Ms.Polly, Well done for fighting your corner and keeping most of your T3. I doubt it is purely a cost issue as your dose has been reduced very slightly to let your FT3 fall into range. Reducing your T3 by 5mcg and increasing T4 by 25mcg is actually a slight increase in meds. Endo has said you should have 75mcg T4 + 20mcg T3 so why do you think your GP will stop your T3?
My FT3 was 8.4 (3.2-6.2) on 75mcg T4 + 40mcg T3 so T3 has been reduced to 30mcg. I didn't feel overstimulated other than slight tremors but I've reduced T3 to 20mcg for the last 12 days so FT3 drops a little before I take 30mcg and tremors have improved very slightly.
There is increased risk of atrial fibrillation and osteoporosis when TSH is suppressed long term and/or FT3 elevated. I have mild osteopenia and TSH needs to be suppressed so I'm keen to keep my FT3 in range, hopefully towards the top, but not over.
Just buy your own. He doesn't have to walk in your shoes (or more likely limp along). You can pretend to be doing what he says to get your blood tests and free prescriptions. He'll think you are a medical anomaly.
I haven't found a real problem with some big quarters and some little ones when dividing 25mcg T3 tabs.
If they think you don't need T3, it would be interesting to act innocent and ask them what T3 is then and what job does it do? It would be fascinating to hear the answers offered.!!
Ask about T4 too ........what happens to that when we take it?
Please everybody ......don't bombard me with answers though .......I have read a lot of books and had the benefit of a lot of help from you all already.
I found that once I had become a bit knowledgeable about the thyroid and started asking relevant questions the whole attitude changed towards me.
It's really bad though that we have such a fight to get help from our medics. I had to tell my GP that if he continued to let my TSH rise each blood test, I'd soon be out the top of the lab range.........It was then that he said he had heard what I was saying and started to adjust my medication.( and to back you up polly my Endo is one who does prescribe T3 and my GP has accepted that I need it)
My GP never asks how I feel.........He's probably scared I will tell him.
His first words are always "What can we do for you?"
I think it's maybe surgery policy.........
It looks like you will have to fight hard .........I'm not keen about changing surgeries .I know it's a continual struggle but they need enlightening and if we run away they learn nothing.
I hope things will improve for you too.
Another thing to try might be to ask who wrote the Canadian study and find out in which journal published. If it's going to be used to take patients off T3, then it must be a wonderfully written thing, mustn't it?
Anyone have any idea what study might be being referred to here?
they raise the osteoporosis bogie every time they want to keep us on Levo, don't they? Isn't there (conversely)) a study that gives the lie to that link? Or h ave I dreamed that?
HI thank you for your reply please could you pm with any lists' you have to source, T3 the ones' i bought only came in 20 mcg and i had to cut them which means' you are not getting the full dose, just in case i this idiot endo stops' my t3.
Some doctors talk sense but it seems when it comes to the thyroid gland, they talk nonsense. Their knowledge appears to be non-scientific and rumour filled. These are a couple of links and if only more doctors treated their patients, instead of the computer print-out.
Your doctor is spouting the type of language to frighten us off getting proper treatment, that is sufficient decent medication to relieve all of our symptoms not just one or two, with the others being treated with anything other than sufficient thyroid hormones.
Stand your ground!! Tell the endo you are fine on whatever dose you are on and DO NOT let them lower or change your meds without permission. You have to agree with the doctor to reduce meds and all you need to do is say, 'I am fine on the dosage I'm taking, thank you' and keep repeating it till the 'specialist' backs down.
he'll probably wash his hands of you - but difficult to see a downside to that! You could ask to see a different Endo. I imagine he won't fight to keep you on his books ...
Can anyone confirm or refute that taking T3 along with Levo harms the heart long or short term? I do not have a thyroid, removed earlier this year. Thanks x
I'll PM you all the stockist I know about in a mo (it's not the only one, I'm sure).
I'll just add - getting T3 is the easy bit. There are folk here who can help you work out what dose you'll need to take, in conjunction with Levo, or NDT, or on its own - but I don't have a good enough grip to go there.
Ask for help (in a fresh 'question' posting) and I'm sure each of you will receive. It'll be useful to say what blood test results you've had recently (if you have any) and what meds you're currently on (if you are). And what the problem is that you're experiencing. There can be a lot of different reasons why Levo (usually) doesn't suit you.
My problem is possible allergy to Levo, shaking, internal tremors, unable to sleep. after I have seen private Endo this week, hope I will ave some answers. Thanks again. X
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