just had a consultation with endo and he wouldn’t list to what I had to say , he said it would be incompetent if he was to give me any more medication as my tsh is undetectable. I tried to say about dr toft and also another endocrinologist dr Trevor a howlet at Leicester royal infirmary he then told me he was a thyroid endocrinologist and it was no use us talking anymore as I believed one thing and he believed another and he wasn’t going to change his mind no more than I would change mine . I said the only other thing is if the pituitary gland. Wasn’t working properly, he never replied to that. At all , I also mentioned about how he had put my thyroxine down by 50 and I thought you normally only change it up or down by 25 again no comment, then he told me results t3 6.4 (3.1-6.8) I was quite pleased with that t4 16.4 (12-22) tsh undetectable, I’m just wondering is there still time for improvement to happen as still sleeping quite a lot and not a lot of energy, would adding 25 t4 help or not please look forward to your replies thankyou all
endocrinologist : just had a consultation with... - Thyroid UK
endocrinologist
I’m sorry your endocrinologist wasn’t supportive/ was dismissive of your opinions. Next time you book an appointment with either an NHS or private practitioner, I would check first that they are on the TUK patient recommended list.Have you tested key vitamins recently Kowbie? Having optimal levels of folate, ferritin, B12 and Vitamin D supports thyroid health.
Thanks for replying,my vitamins were tested about 6months ago and were all good as I had been taking supplements, I stopped taking them because when I first saw an endocrinologist he told me to stop taking them , but he’s not the endo I’m seeing at the moment so I might start taking them again, thankyou for help hope your feeling good
Kowbie
What dose of Levo and T3 are you currently taking?
Did you take your last dose of Levo 24 hours before this test?
Did you split the T3 the day before and take last dose 8-12 hours before the test?
Thanks for replying, I’m on 150 thyroxine and 10 t3 morning and afternoon,took my dose t3 about ten hours before test the only thing I did do was take 50 thyroxine at the same time , I should have taken it all in the morning but forgot , normally take 100 in the morning with t3 and the other 50 later when I take my other dose , I didn’t know what to do I thought if I don’t take the 50 it would make my test wrong , I suppose I’ve messed it up taking it , hope you can understand all of that, thanks for your help, do you think I could have something wrong with the pituitary, hope your feeling well
Morning seasidesusie I just wondered if you had anymore thoughts about how I’m feeling, and if you have any suggestions, I would appreciate them thanks again, and I hope your in good health.
Kowbie
t3 6.4 (3.1-6.8) I was quite pleased with that t4 16.4 (12-22) tsh undetectable, I’m just wondering is there still time for improvement to happen as still sleeping quite a lot and not a lot of energy, would adding 25 t4 help or not
I’m on 150 thyroxine and 10 t3 morning and afternoon,took my dose t3 about ten hours before test the only thing I did do was take 50 thyroxine at the same time , I should have taken it all in the morning but forgot
So we have an undetectable TSH which is often the norm when taking T3, we shouldn't really consider TSH when on thyroid hormone replacement, it's useful for diagnosis but doesn't help once treated, it's the FT4 and FT3 that tell us what we need to know.
So FT4 is 44% through range and FT3 is 89.19% through range.
Because you took 50mcg Levo with your T3 10 hours before your test you may well have a slightly higher than normal FT4 level.
Where we need our individual hormone levels varies from person to person, it's something we have to experiment to find out what suits us. I know that with your results the FT4 would be way too low for me and I'd be unwell and symptomatic, but it would be fine for some others. So you have to find the balance that is right for you.
You certainly don't need any more T3 as that would take your level over range.
If those were my results I'd be adding a bit more Levo. However, taking more Levo will not only increase your FT4 level it's likely to increase your FT3 level as well depending on how much natural conversion you have so you need to look out for that.
I'd probably add 12.5mcg Levo at this stage, wait 8 weeks then retest to see how levels have changed, then reassess. If FT3 has increased you'll need to reduce your T3 dose a bit.
Don't change both at the same time, only ever one at a time because you need to know what that change achieves.
It can be a long, tedious journey to find the right balance and lots of patience is needed. You can't rush it, all you can do is make small changes gradually, check the effects then decide on the next step.
Thankyou for your opinion I think I will do as you said add 12.5 and test in 8 weeks, I’m just a bit worried at the moment as dr rang and said they couldn’t prescribe the t3 un till they had spoken with endocrinologist so I’m hoping I don’t run out , or what do I do then , it’s a bloody headache but thanks for your help , it’s so nice to be able to talk things through on this site much appreciated, bye for now , I’ve just woke up again slept all night had breakfast and been asleep most of the day , what a life
he then told me he was a thyroid endocrinologist and it was no use us talking anymore as I believed one thing and he believed another and he wasn’t going to change his mind no more than I would change mine .
Nest time tell him that the main difference between him and you is that it's you that is suffering with the symptoms of under-medication.
Thankyou for replying, have you any ideas why I’m still not feeling right, could it be t4 not high enough, or the pituitary being a problem, I thought my t3 was good so I don’t really understand but thanks again
Well, it could be that your FT4 is not high enough for you, as an individual. But, doctors don't understand the individual bit. They think we're all the same!
I could even be that your FT3 is actually a bit high for you. Too much can be as bad as too little.
But, I don't see that the pituitary would have anything to do with it. TSH doesn't make you feel anything, whether it's high or low.
Other possibilities are nutritional deficiencies - have you had your vit D, vit B12, folate, ferritin tested? Or low/high cortisol. Have you had an 8 o'clock serum cortisol test?
Hello hope your in good health, my vitamins were all good about 6months ago when I first saw an endocrinologist he told me to stop taking them because of the biotin in them seeing a different endo at the moment , but don’t know if they would still be good , about the pituitary I just wondered if it could be something to do with that why tsh is undetected, oh I am on folic acid 5mg ,
The TSH is undetectable because the Frees are high. But, as I said, that would have nothing to do with the way you feel.
Your endo told you to stop taking all supplements because of the biotin??? That sounds very weird. There's nothing wrong with taking biotin, except to leave it off for a week before a blood test. In six months, your levels could have dropped drastically. So maybe time to get them tested again. 
Thankyou I will start back on them today thankyou for all your help I do appreciate it, and I hope your in good health as well
I'm bearing up, thank you very much. 
Morning, I’ve just been reading through again and noticed about cortisol, I haven’t been tested for that what would that show up please,sorry to bother you again.
High or low cortisol would cause symptoms, and affect the way your body uses thyroid hormones. I'm not an expert on cortisol, but I know that when mine was very low, I suffered a lot from fatigue.
I once stopped taking my B complex for 3 months - then on a blood test it came up that my folate was under range and B12 had halved.I take it daily now and feel much better.
I also changed to Thorne Basic as recommended on here and that has made a difference too.
Hello again Kowbie
Primary hypothyroidism caused by having had RAI thyroid ablation is more difficult to treat :
I gave up trying to get better through the NHS and staying ' in the system ' simply exacerbated my symptoms and so after reading much and building up my vitamins and minerals to optimum levels I started to Do It for Myself and am much improved.
I was refused a trial of T3 and only ever treated with T4 monotherapy and became very unwell dealing with the long term consequences of RAI and a doctor dosing and monitoring me on a TSH that had to be ' in the range ' irrespective of how ill I had became.
I did get to see an endocrinologist who said nothing of any relevance except that my TSH was too low and that I was over medicated - though my T3 was at only 25% and my T4 at 100% through the range.
I'm presuming you have Graves Disease and why you had the RAI thyroid ablation years ago.
You might like to read of Elaine Moore and her Graves Disease Foundation - an excellent grounding in all things Graves Disease elaine-moore.com
Tired Thyroid - from Hyper to Hypo to Healing - breaking the TSH rule written by Barbara S Lougheed - and the title sums up where we are after RAI :
Both the above ladies have Graves and went through RAI thyroid ablation and finding their health unable to be restored through the mainstream medical channels ended up doing their own research, doing it for themselves and then writing books to help others stuck in a similar situation.
Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism and my goto for a common sense approach and understanding on how the body works and Barry Durrant - Peatfield wrote this book to equip patients to help themselves as the system is failing so many thyroid patients.
originalText
Hello thankyou for replying to me, I will look at the books you have suggested thankyou , I thought my t3 was very good but don’t really understand why I feel like I do , do you think it’s because t4 is not high enough, or do you think it could be pituitary problem thanks again.for your help
I think after RAI thyroid ablation the body tries to compensate as best as it can but nothing works the same and it's more about repairing and understanding what this toxic substance can do to the body and trying to optimise as best as you can.
If with Graves Disease I read we may need to run with a higher T3 than most, as our body has been programmed to run slightly over range ??
I think having lost the thyroid gland we haven't the ability to adjust / monitor how our body utilises the synthetic T3 and T4 thyroid hormones.
I've switched to Natural Desiccated Thyroid and am much improved - this was the original successful treatment of thyroid hormone replacement and used successfully for over 100 years NDT is derived from pig thyroids, dried and ground down into tablets referred to as grains and each grain contains all the same known hormones as that of the human thyroid gland.
Where do you get that from , please and could you tell me how much it costs as well , can you get it without a prescription, and how do you know how much to take , thankyou
NDT is meant to be available on the NHS on a ' named patient only " prescription basis :
Up until around the turn of the century, NDT and T3 were in your doctor's box of tricks to prescribe if T4 monotherapy didn't restore the patient's health.
Sadly, currently, you need a referral for any option other than T4 - Levothyroxine :
Some people get NDT on the NHS - being referred to the ' right ' specialist is key -
and if you go private obviously your options are greater and you can ask the question before committing your pension.
Thyroid UK the charity who support this forum have a patient to patient list of specialist - maybe get this list see if there is anyone there and remember distance isn't the issue nowadays as many will do zoom / skype consultations.
I was refused both T3 and NDT through my surgery and hospital back in 2017 and I couldn't travel too far and also the expense was an issue as I'm on single persons pension so I decided to buy my own and trialled both these options for myself.
I'd read the books by then, and reading, mostly on here I felt confident to give it a go.
You can buy NDT without a prescription but we are not allowed to openly discuss the details.
Thankyou for all the information you have given me , will start to read up about it nice talking with you ,
Elaine's first book, Graves Disease A Practical Guide was written from a medical perspective and for the medical profession as Graves is a poorly understood and badly treated auto immune disease.
I found Elaine's writing a bit heavy going - but then I am dyslexic and at the time very unwell and with terrible brain fog -
Suggest you dip into her website first as I believe it to be more patient orientated.
Thankyou ,well I can read something and then think what have I just read ,I’m ok on short ditty things but find I don’t take in what I’m reading sometimes, but I’ll have a go thanks again
Yes, I know that feeling and why I recommended Elaine's website as it's in smaller manageable chunks - but it's about Graves and not treatment options so you'll be better placed reading elsewhere about the different treatment options.
Elaine does mention though somewhere, that some people ' do better ' on a T3/T4 combo but her whole being has become one of learning about Graves and other AI diseases more than recommending any treatment options, at least that's my understanding.
Hi personally I think that your endo is either blind or stupid. How can your tsh be undetectable at 2.55 and saying your t3 is 6.4 when you printed that it’s only 4.3. You definitely need a raise in levo. Jo xx
Sorry I don’t know what’s happened, I did put results in for this time my t3 was 6.4 (3.1-6.8) my t4 was 16.4(12-22) and he said my tsh was undetectable, I wanted to talk about pituitary to see if there could be something not quite right there but no at least he is leaving me on my dose and not putting it down , well I hope that’s going to happen as surgery has phoned to say they can’t give me it at the moment , so I’m waiting to see if I can still get it , bit of a headache really thankyou for replying to me .
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