I asked the Endo ages ago why its like this he said its because I had to much thyroid hormone in my body and didnt say much more at that appointment he even had raised my T3 another 10mgs to 30mgs
the next appointment bloods were
TSH 0:004 Range 0.35 -4.94 TSH 0.004 for ages
T4 11:5 Range 9,00-19.00 it was Was 12.7 . the previos blood test
T3 4:6 Range 2.90 - 4.90. Was 4.9 that was previously 5.6
Anyway Endo said he is thinking he isnt liking my TSH so may reduce T3 next visit, anyway Im confused with this as it was like this on T4 for ages before i even went to see him.
I am trying to get a referal to another Endo as think this Endo is only a prescriber of small amounts of T3 but really having his doubts as a good Dr
I feel under medicated and getting aches and pains when my T3 runs out , carpal tunnel has come back with a vengeance raynauds thats quite new , frozen shoulder and no knee or Ankle reflexes. if i get up at 4,30 am i am good for the day if i go back to sleep till 7 i feel severely hung over and i dont drink , so get up early to avoid hangover feeling as is bad , I get quite a few migraines as well I also have days where i have zero energy and do not manage to get out of bed,
I do however have much better days since the T3 was added but do not feel not over medicated,, if my T4 is this is low surely that shows I am not on too much meds.
I am wondering if I should ask to get new Ends to look at pituatary as I have had a serious car accident quite a few years ago where my front lobe was very bruised and I was unconscious for a couple of days , I also passed out onto a pile of rubble in Goa and was out for a while I fell on my face then as well I was in hospital 3 days with that
or should I ask for a Dextra bone scan where the TSH is this low,,
I do not trust Drs that much anymore and thought someone on here would be more clued up than any Dr ive seen in the past
I have dio2 heterozygous and a dio2 genetic fault
Thanks
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Pascha1
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The TSH is not a thyroid hormone. It is from the pituitary gland and only goes into action (i.e. raising the TSH) to try to flag up more thyroid hormones. The emphasis should always be on 'how the patient feels' before adjusting dose. This is an excerpt:
You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. It's simple common sense. TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels.
It Seems Endos and Drs know very little about the Thyroid with just a few select who do know about it all !
I have a GP who is better than Endo, but only comes to my surgery once or twice a month as I am very remote anyway she had copied him in, on all my my symptoms she said was Endocrine but because I was under the Endo , she would tell him everything and hopefully between them they could get me well but he could do the investigations , she thought I maybe a difficult one to get right,
she is not allowed initiate any doses of T3 nor able to initiate NDT as her hands were totally tied an Endo had to initiate then she could treat me ., ( she was about to prescribe me T3 last year but got banned just after i had bloods done
When i told her about recent appointment that he had almost pushed me out office after 5 mins, he was late seeing me and guess he wanted to see next patient on time ,saying I could either go back to the GP who may not be happy to prescribe the T3 i was getting or I could waste an appointment someone else desperately needed.. I went and sat in toilet and cried after that !
My GP was not happy he hadnt even bothered to read what she had copied him into and said You know you are entitled to a 2nd opinion, and pick next endo wisey as you not want to travel 100 miles for another one that won't listen and she will refer me, I think i have found him so waiting to hear if he will see me
This GP is not worried about TSH just how i am feeling a rare GP but with her hands tie tightly round her back for prescribing better thyroid meds
I had a sub thyroidectomy in teens now 55 never felt right after it felt worse after diagnosed and on Levothyroxine that seemed to cause a whole new array of problems and symptoms I never thought it could be the T4, I dont think i ever read the PIL to see side effects, I should of but a bit late 15 years on as they dont believe me now I have bad side effects I blame stupid Gp i had at time for not realising i was not right on it !
Some people seem ok taking it all at once, others need split dose
I have found, by experimenting, I need to take it every 8 hours otherwise I get carpel tunnel, intense adrenal pain, shoulder pain, etc
That's on exactly same dose. (125mcg T4 and 20mcg T3, taken as 1 x 10mcg, plus 2 x 5mcg)
Even taking twice a day is no good for me. (Pity as mid afternoon dose is inconvenient)
Dosing 3 x per day virtually symptom free. 7am, 3pm and 11pm
I also have DIO2 gene heterozygous
Your TSH is bound to be extremely low on your level of T3 and T4
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If also on T3, make sure to take last dose 12 hours prior to test
10mgs morning 10mgs lunch then 10mgs before i go to bed,,
My Tsh was that for years on T4 mono before I even started T3 added
Bloods done 9 am noT4 thyroid meds for 24hrs T3 was over 12 hrs I took after bloods done
I am an ultra fast metabiliser of tablets in general and not many last long on me, many prodrugs cause me severe allergic reations because of this its in my genetics
( shame im not a fast metaboliser to get rid of my fat lol)
So when T3 runs out all thyroid pains and things start happening, till I take next dose, but the Endo says my T4 backs me i up I agree to disagree on this one .
T4 has really never done that much for me to be honest but didnt realise it ws that till I came on this forum .. Gps made me believe it was my age the usual stuff we get fobbed off with,,, .. I try different foods to see why one day I may be ok then another not,, nothing seems to be a trigger to making it work ,,
I can only guess that sometimes the T4 works and other times it just does not its weird ,,
I think im one of those people where bloods look ok but I feel far from ok or that its because its a prodrug as said to someone else I have never done well on prodrugs x
I did wonder about T4 should be higher , tbh when they 1st added T3 I was slightly under medicated and as the T4 came out sytem I began getting symptoms again , , I hopefully am going to an Endo who prescribes NDT and T3 and listens to my symptoms , till then i cant do much about it or other option is see the Endo I have been seeing when ever he sends next appointment But i think Ive washed my hands with him tbh I have lost faith in him so wont see him again x
It's not a question of 'should', but do you, as an individual, need your FT4 to be higher? Some people do, others are happy on T3 only. It's a very individual thing.
As to your pituitary, did you have your accidents after you started taking thyroid hormone replacement, or before? If before, what was your TSH when you were diagnosed? Even if the problem is with your pituitary, the treatment won't be any different. It will just be that they can't dose by the TSH. They shouldn't, anyway. When taking T3, it's the FT3 that should be looked at.
Do you know how well you converted before you started T3? If you're a very poor converter, NDT might not be right for you, because it only contains 9 mcg T3 to 1 grain.
I am also in process of waiting to see if the Endo who prescribes NDT will see me, Thats if he is still allowed to prescribe it, on NHS if not I may have to go private but cant really afford private treatment tbh x
I didnt convert that well as proved by medichecks, bloods, so will take those results with me when i go, I cant afford to have them done again and may not show it now I have T3 added ..
Now you have T3 added, your bloods will not show conversion rate, no. They have to be done on T4 only to show that.
Im not sure if i fell better with higher Tsh
If you did, it wouldn't have been because your TSH was higher, because TSH doesn't make you feel anything. It's low T3 that causes symptoms.
felt really good when t3 was added but after 1st month I think I became undermedicated
You more than likely were under-medicated, yes. T3 needs slow titration just like T4. You have to increase by 6.25 mcg every two weeks until you find your sweet-spot.
I had both accidents before I was diagnosed,, I was very clumsy and fell often so probably had more bangs on head after being diagnosed
So, what was your TSH when you were diagnosed? Were the accidents long before diagnosis? Ah, found it. If your TSH was 7.8, it's doubtful you had a pituitary problem. Anyway, as I said before, even if you do have a pituitary problem, the treatment is the same - thyroid hormone replacement. Your problem seems to be that you can't find a doctor that knows enough about thyroid to treat you properly. Leaving a patient with a TSH of 4.8 is just wrong.
But, if you've had a sub-thyroidectomy, that is more likely to be the reason for your hypo that a pituitary problem. People can rarely manage on half a thyroid. I don't understand why you were taking carbi. Have you ever had any antibodies tested?
I was on carbimazole because I was very hyperactive before Sub thyroidectomy,
i wasnt on anything after it that was 1981
I was not treated for hypo till 2002,
I think with a TSh of 2,7- 2.8 in 1987 was me probably hypo as no energy at all
the accident was after that around 1997 the india fall probably was in 2001 no record of any of them all lost , I have no records of what I was just after Sub thyroidectomy but I know I had no energy ever after it, so my bloods looked ok but i was suggish . I must of been one of these people who felt better when i had much lower TSH higher T4 but guess I will never know...
so have no bloods till 2002
Medichecks said i had a conversion problem and reverse T3
I will take medichecks results to Endo appointment so they can see it , but I was also slightly over dosed but never felt like i was I was freezing cold body temp of 34.5 - 35.5 pulse was 66-72 bpm so no way does that indicate overdosed or hyper, I have been hyper and i didnt feel like that , when hyper was hot never cold !
I felt brilliant when the T3 was 1st added 10mgs twice a day but my guess is when the T4 was going out system I started to feel not so good
As I said i get really good days well what others would call a normal day where i am productive and then some really low energy crap days with very low moods and cold and just cant get out of bed a struggle to even make something to eat or drink its that bad !
I have to spend a day or two in bed, bit like after the thyroidectomy its like i have to recharge batteries but get pain and heart burn back so feels like the meds just dont work on some days, is quite frustrating really
Zero Antibodies for Hashis, , was tested with medichecks end of last year and when 1st diagnosed so not got hashis !
You can never say with any certainty that you don't have Hashi's, because some Hashi's people never develop high antibodies.
So, when you had 'hyper' levels of thyroid hormone, did you have your Grave's antibodies tested? Because something must have caused your levels to be high. And that would either be Hashi's or Grave's.
I felt brilliant when the T3 was 1st added 10mgs twice a day but my guess is when the T4 was going out system I started to feel not so good
I doubt the T4 leaving your system had anything to do with you starting to feel bad, because you couldn't convert it, anyway. I expect you just needed an increase in your dose of T3, as I explained above.
Your Medicheck results are a couple of months old, by now, aren't they? So, not much use to your endo. You need a new FT3 test to see where you are now.
Im not sure if I had graves as my mum dealt with it all and the hospital have destroyed notes. most of medical records have gone AWOL so guess I will never know, I had very bulging eyes a a thyroid toxic crisis s( a thyroid storm) heart beat was 180bpm resting , I had quite a large Goiter where i often choked when i drank anything, I know my levels were very high and was kept in hospital for 2-3 weeks l I was stabilised I was 1st put on lugals iodine the and propanonol and some other things but as allergic to it they put me on carbimazole , Is there another hyperthyroid other than graves as not sure myself,
They took thyroid out very quickly and put back in care of crap Gps thats all I know about it tbh , the only thing in notes said somthing about thyroid toxic crisis. thats all there is,
my mother has passed away so I have no way of finding out..
My eyes were bulging badly, I couldnt even light a cigerette or hold a glass my hands were so shakey, could never get suntan and was very thin and white , I had been like it for years , the drs put me on valium and then lorazepam , they thought i had anxiety and depression,, not much better treatment from GPs being hyper either ! I do not remeber graves being mentioned just dangerous levels thats all !
my friend has Hashis I she never feels like I do, she says levothyroxine works ok on her she never ached, just low energy which has T3 added but no symtoms are the same as mine... She said she felt hyper at times, ive always felt tired no hyper swings as I hear others with Hashis have, just tired and achey
since starting Levo felt better before starting that,but as pe rusual GP blamed everything but thyroid and I believed Gps back then , I do not now !
Before being diagnosed and not on Levo I just had very low energy hair never grew after operation..@ still doesnt grow that much and was very slim.
You can be hyper with either Grave's or Hashi's. But, you can still find out, because if you had Grave's antibodies, you will still have them, they don't go away.
You can't compare yourself to other people, we're all different, and all experience these diseases in different ways. Which is one of the reasons they're so difficult to get diagnosed and treated. But, with bulging eyes, it does sound like Grave's. How are your eyes, now?
my bloods were 0.004 FT4 11 bottom range and T3 was 4.9 very top end of range ,, the range ended at 4.9 so the endo wouldnt increase anything ! I am being refered to one who might listen to me, my GP wasnt happy with the Endo at all as she had been copying him in things I had seen her about and he didnt bother to read them thats why she said i could go for a 2nd opinion if i wanted to,, I said yes please
Im not sure if i fell better with higher Tsh , felt really good when t3 was added but after 1st month I think I became undermedicated,, I get really good days still but get some god damn awful achy ones , a bit of a mix really....
I had both accidents before I was diagnosed,, I was very clumsy and fell often so probably had more bangs on head after being diagnosed just not ended up in hospital no Thyroid tests in medical records which are missing everything re my sub thyroidectomy in 1981 i think it was , absolutely nothing on thyroid toxic crisis as was in hospital for 2 or 3 weeks whilst they stabilised me,, I had thyroid bloods done yearly but this was all i could find in medical records at Gps , The hospital have destroyed my notes so cant go back to then I remember being on a huge amount of carbimazole and propranolol as they had to keep upping it as wasnt working
anyway 1st bloods i could find 1988 TSH 3.6 and 1989 TSH 3.8 and had macrocytes which im now told that , that meant I was severely hypo but no one even mentioned that to me I feel my bloods do not really say how i am feeling at all . no T4 tested which im disgusted about as I was put on loads of Anti depressants and made to feel I was always wasting Gps time never once did anyone suggest all my symptoms were me hypo... I was thin before taking Levo so i guess they never suspected someone a size 8 to be hypo, I dont come from a fat family so no T4tested after sub thyroidectomy, I believe I was hypothyroid then , I was always tired hair very dry and never grew and my voice was very husky I rarely had energy I would have to stay in bed 2 days if i knew i was going out or wouldn't of coped,,, any way didnt get diagnosed till 2002 with a TSH of 7.5 and t4 14 where i was diagnosed as chronic hypo as i was in a very deep sleep for weeks... ,, then I was left hypo for about 10 years of TSH of 4.8 on 50 mgs Levo till i upped it to 100mgs I seemed to be able to stay awake then but always felt crap , often fell asleep driving it was dangerous , Then TSh done again was 4,6 and Gps said ok again I never felt ok so upped it to 150 myself and Tsh was about 1.2 but still very tired achy next time had tested, I have never felt good on levo and went down hill year by year,, I can see they left me hypo for years so think my body may not be so good and maybe just knackered after years of being Hypo I have the Dio2 gene as well also a dio1 gene fault probably others not discovered > so always ached after levo was 1st started didn't ache like that before it ! T3 helped that but days I feel im still just on t4 mono , also got left hyper for 5 years before with a rapid pulse about 180bpm for at least 3 of them years and ignored, .. I feel better with T3 added than i had done in years tbh.... .i felt almost humanagain the day T3 hit most of my cells .
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