I have had my thyroid radioactively killed, so have no active thyroid. Am fighting a long battle to have more medication as I feel almost as bad as before the treatment - I keep being told my levels are 'normal' and that I am just fat - if I lost weight I would be in perfect health! (Apparently!) I can't share my results as so far they won't let me know what they are - "it is far too confusing for someone not medically qualified to understand......." So having fought almost 8 years before they agreed my thyroid was 'broken' (I was treated as just fat and menopausal - ) I feel only slightly better than before!
Originally I was on 100 Levothyroxine, but because I read about it and felt I was 'not right' - overweight, brain fog, lethargy, generally crappy all over, I requested some more help and could I try Liothyronnine. "Oh - you know about that do you?" - Anyhow, I was made to drop the Levo to 50 and take 10 of Liothyronine as well - after three months this went up to 75 of Levo but still 10 of Liothyronine - which after about two months I managed to persuade them to change up to 20 Lio.
So - now I am on 75 Thyroxine, 20 Liothyronine - but still feel really awful. I fall asleep in the afternoons whatever or wherever I am, I have been doing my temperature on waking and before movement every morning - my average is 35.1 (been down as low as 34.6) so I really do still feel under dosed!
I was wondering if anyone had tried taking the T3(Liothyronine) ADDITIONALLY in the afternoons and was hoping to ask if they would prescribe me another 5 or 10 to take each day then - as I am sure I read that the T3 'runs out' after a few hours of ingestion?
Anyway - if any of you have had enough energy to read this (thank you so much if you are!) could you give your thoughts? I did get VitD/B12/iron and all the other stuff tested, but as usual am just told - They Are Normal.
The brain fog is driving me nuts to be honest! (& the afternoon nodding off!) I am 57 and run my own business so need to keep going somehow!x
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jimjim
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They have absolutely no right to refuse you a print-out of your results - no matter how 'confusing' they are (and even though THEY are medically trained and WE are not, we often make a better fist of understanding them than the so-called 'medically trained'!) So insist, politely but firmly, that you want them and you intend to get them (no matter what!).
Because T3 only has a short half-life, people usually take it in several doses through the day. There are, however, people who take it all in one go in the morning and there are others - like me - that take it all in one go at night. We are all so different that the only way to know what is going to work for you is to try it. If it doesn't work, no harm done.
That said, you are still only on a tiny dose of both T4 and T3 - especially for someone who has no thyroid! - so an increase in your dose wouldn't go amiss. And if you think that that is the best way to get an increase, then why not. But I would go for 10 rather than 5, it gives you a bit of room to haggle.
Thank you for the response! It does make us feel so helpless doesn't it! I do have a lovely new doctor now, but he still says I have normal enough results so must not 'up' my meds. Having read lots of other posts, I really can't believe I am taking enough considering I have not got an active Thyroid of my own! And I believe whilst there is a 'normal' level, it might not be 'normal' for me. So frustrating. Well I will continue with my research and try really hard to get my own results! I just wish I could get them before my next appointment. I might try and find the right receptionist later! I will report back next week!
I was on T4 for a few years but just over a month ago I saw Mr Endo.I was put on 50T4+20 T3 divided into two doses.Last week (a month on.)I saw my GP who upped both to 100+40 divided into two. I feel so so much better.Hope this helps you.
Can you tell me what your blood tests were please - you can Private Message if you prefer - but I am trying to get a guide on what 'normal' blood tests people have in relation to their actual dosages - my point is if my Thyroid has been destroyed radioactively, then I am surely going to need a fair dosage. I don't feel I am on a high enough lot, but they just keep telling me it is because I don't understand, and shouldn't try and work it out either! Drives me nuts!
But thank you for the info - I do believe they hate letting people have liothyronine as I believe it is really expensive!
I am horrified that your surgery won't share your thyroid results and agree with Greygoose that they have no right to withhold them from you. Luckily for me, my GP is willing to admit that she knows less about the thyroid than I do - maybe not something to be so proud of but at least she now lets me get on and medicate myself with T3!
Just to reply to your main question on this...... I did try a combo of T4 and T3 but actually felt worse on it, and only tried for around 6 weeks. Like you, I was only on 20mcg of T3 though in 2 doses.
Since then I have been able to move onto T3 only, and now on 55mcg per day. And yes, by taking it in 3 doses overall, I do definitely feel a lot better in the afternoon and evening than I used to feel. Previously I was on 100mcg T4, for around 17 yrs and had a diagnosis of ME/CFS.
The T3 only has not solved all the ME issues as I am still short on physical energy stamina, but I do find that the T3 gives me a top up throughout the day, and I am still working on optimising that.
I too had thyroidectomy about a year ago. I am on 112.5 T4 per day and take 10 microgrammes (1/2 tablet) 3x per day. Apart from recent batch problems this has worked reasonably well for me. I was told I was in range on 10microgrammes of T3 once per day, but didn't feel better and had some problematic symptoms until upped to 3 x per day. My endo said that if working particularly long day, I could up T3 by extra 10 microgrammes, but only occasionally .Have only done this a couple of times. I still feel myself dipping between doses, but afternoon / evening much more manageable.
Oh my at last i have found someone that feels as rubbish as i do i still have my thyroid but take 175 thyroxine a day but so fat and tired still i am 53 had big op for Ovarian Cyst/cancer at 32 so been on hrt since doc just's says blood tests are within range
So sorry that you are not so good! I know how awful it is - since it was almost 8 years of arguing that it wasn't just the menopause! I do accept that being 'our age & female' we would expect our hormones to go a bit loopy - but it is so hard! Originally I was told it was overactive thyroid, then underactive, then over again - so much so that on year 8 they agreed my thyroid was just broken. At least now we know it doesn't work, so whatever I take my body won't start reacting as it can't. We have a level zero base line, I accept that changes in medication take a few weeks to settle. After arguing to try liothyronine (T3?) as well, since I was so yukky, they did 'allow' me to try it! (How very lovely of them!!) This made a huge difference to the 'brain fog' which was terrible. It helped a lot, but now it's settled I am convinced if I could just have a bit more, I would feel even better, then might be able to shift some weight as I might stay awake long enough to find the strength!
I have been warned that 'long term' they need to protect my heart - so this is the reason they are determined to keep me on as low a dose as possible. I have NEVER had any heart trouble, so not sure how bad it would be to up my doses?
As usual, THEY hold all the cards, and follow their own rules. I am quite cross that I can't just get my results - I may be given them when I go to see him, (I shall demand them!) but - it doesn't help me to prepare any arguments - so - if any of you can put up a sensible set of GOOD & ACCEPTABLE levels all round - not just the 'normal range' sets, I would be most grateful - bearing in mind I do not have ANY activity from my own Thyroid.
Thanks to everyone for being here though - it is great to know we are not alone.!
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Brain fog!
No improvement with Levothyroxine increase
Recent visit to endocrinologist at Barnsley Hospital. 
TSH 65
Has anyone experienced a major improvement by taking NDT as opposed to Levo and/or Lio?
