Hello all,

I saw my endo for the first time,last week,,

i am still shaking , and sweating , and feeling giddy and have tinnitus,,

he said

none of these symptoms are thyroid related,,!!

i am still shaking badly in the mornings and at night ,, i dont drink,,,

i sweat and someday still cant move,, although i have to say i was feeling marginally better, for a few days and getting all hopeful as im due back to work at end of july

i have to get the results of my urine test , but how can i ask the gps to get my tsh levels down,,they are around the 3.11 mark i think and t4 14.3 ,,they still seem to think that 50 mgs is a fine level to keep me on as my results are in the lower half ,,and i have been diagnosed with autoimmune thyroiditis..!! my weight is still up and down like a roller coaster ,,but on Sunday I totally crashed again ,, i had no energy , i was sweating profusely every five minutes and ached like id been in a car crash again. I t was such a struggle to get up the stairs and i kept falling asleep every 5 minutes i didnt even have the energy to make a cuppa..This is ridiculous I cant have this happening inadvertantly,, its taken me all my energy to type this today .I am going to the doctor again on wed, ive nearly seen the GP every two weeks I am feeling so rough. I thought it was a simple thing of just putting one on the right level , and eveything goes back to normal ,, oh boy was i wrong,,,!! nothing has gone back to normal ,and i am still very slow at walking and doing anything,, i feel such a drip i should be walking about as healthy as anything,, and im not, the endo also said im pre menopausal and the gp suggested i take sage and eve primrose oil, which helps a minute bit,, but im still sweating really badly

any suggestions,?



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18 Replies

  • Astro, Ask your GP again for an increase in Levothyroxine. He might refuse though as you are now under the care of the endo.

    If he refuses, I would simply increase your dose to 75mcg and see whether your symptoms improve. If you think you'll run out of Levo say you dropped your pack down the toilet and ask for a replacement prescription. You'll then have to decide whether to come clean with your GP and hope the improvement persuades him to increase your dose or buy additional Levothyroxine on the internet.

  • Dear Clutter

    I am seeing the Gp tomorrow i will ask him for a rise in levo as im still feeling awful,,but ive got to say i feel that none of the gps in this practice that i attend know very much about the thyroid.

    They seem to take all that they know of a text book, ! I would also like to know what to ask the Gps for , to take to stop my immune system attacking my thyroid further id like to preserve as much of it as i can if possible.

    I have read other replies where other people with auto immune thyroid problems have managed to save their thyroid,and i am none the wiser as to how or what they take to do this.

    I am aware my body has now gone auto immune and will likely stay like this for the duration(why cant the doctors reverse this by now)?

    I have just spent the weekend on the couch unable to move again as i was in so much pain and perspiring ( i really don't like that word sweaty ,,its sort of nasty) all the time ,,feeling giddy,,

    I also want to know if i should ask for water retention tablets to sort this weight thing out as i still feel like a roller coaster,,

    this thyroid thing especially as it gone all autoimmune is more complicated than ever and what one has to do to keep it happy is incredibly intricate,, like a precarious balancing act that if you get it wrong you can be very ill indeed.

    Im sorry i seem to ask so many things but im so fed up of being so unhealthy i just want to feel normal ,like i did three months ago.

    Thankyou so much for your reply



  • Astro, the only thing you need is an increase in Levothyroxine to reduce your TSH. It's not enough to be in range. You need to be much lower in range, around 1.0. If you can't persuade your dumbass doctors that you need an increase you'll need to seriously consider self medicating and raise the dose yourself as I suggested above. Your doctors are keeping you ill by keeping you on 50mcg with such a high TSH.

  • Dear Clutter

    I see we both have sleep issues too,, i cant sleep at night at all or thorughout the day..

    i will speak to my gp , i am not happy at all with any of the at the moment or my endo ,,im not that impressed ..

    however,, i dont want my immune system to attack my thyroid further and will see what he suggests ,, but i will ask for the dose to be increased as i dont feel anywhere near human right now!!!

    thankyou sooooooooooooooo much night owl

    and earth angel

    very kind regards


  • 50mcg is an extremely small dose and your Endo is wrong - they are clinical symptoms of a thyroid gland dysfunction, probably due to your low dose and a high TSH. Dr Toft of the BTA suggests a dose of levo to bring your TSH below 1. You appear undertreated which can cause other serious problems

    If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft to give to your GP. Highlight question 6 and send him a copy before your next appointment. I would ditch the Endo and also ask louise at the above email address for a list of sympathetic doctors - some may be private.

  • Dear Shaws

    my gp seems to think i havent hit the menopause but my endo says i have no oestrogen whatsoever

    confused?????? i AM VERY,,,

    My gp suggested i took sage and eve primrose as i cant take the hrt as i had hormone related breast cancer 5 yrs ago,this costs £30 a month and i have very little from my salary left after my bills as now i have been off work for three months i wont be allowed any over time until my phased return finishes, although i will when i go back have a fit for work note,which although i am only three weeks away from i still don't feel fit for my job which is walking most of the time and outside with the public,, i seem to have panic attacks at the slightest thing, which really isn't me!! i find lately the slightest stress sends me right back and im on the sofa perspiring all day and in pain,,its ridiculous!! Not the sort of person i am at all.

    The gp and endo both seem to think my TSH levls are ok ,, but i think they are both going by the text book,,

    my gp did do the outo immune test and confirmed it was ,,that was about all..

    i will e mail the lady you recommended

    thank you very much



  • This is a good link and although it's archived as Dr Lowe died last years, there is such good information. Clutter is right you have to increase your dose yourself. It's not dangerous as it is a hormone and listen to your body. There are other topics at the top of the page but some links within them may not work. Go to the date April 22, 2007 to read the whole question but all of the questions on the page may be helpful:-

    There are two potential sources I know of for people feeling awful when they are on T4-replacement. One source is the extremely low dosage that doctors typically prescribe nowadays. A low dose of T4 can effectively reduce TSH secretion. The lower TSH can in turn lower the thyroid gland’s output of thyroid hormone. At the same time, low-dose T4 may not compensate for the thyroid gland’s reduced output of thyroid hormone. The patient then has too little thyroid hormone to properly regulate the metabolism of most of her body’s tissues. She then ends up with abnormally low metabolism and troubling hypothyroid symptoms.


  • Dear Shaws

    I must say you two and alot of the others on this site have been wonderfull as ive been in such a state,

    The last time i had horrendous loads of sickness from work was when i had cancer, but that was a simple remove it , do the radiation thing when all the scars are healsed ,, go on the tablet and we will check on you six months hence and take the tablet and you should be good as new,,

    This however is an entirely different ball game ,, its like white water rafting,, nothing is simple and all your body is effected and you dont know if youre coming or going and in pain, crippled twitching shaking ,,sweating, cant think , cant talk, cant move ,, well im sure i need not go on,,, i spent the last three days going full cycle on that one

    any how i finally got the gp to agree to increasing my dose,imm now on 75 mg,,

    he also said to take ranititdine instead of omprazole, twice daily and hes given me another form of hrt that isnt hormone based to help with the sweats ,,

    The only thing i dont understand is that when you go to a gp they are supposed to tell you what to take to get better,, but in this case ive had to find out myself and ask him to prescribe it, all bar the ranitidine which another locum suggested taking and i asked the gp why she did this as i thought it was the same as omprazole, he said it wasnt the same and works in a different way and may control my roller coaster weight problem!!

    Well i took my extra dose of levo and the other tablets. Im pleased to say the results of my urine test came back normal and i have no nodules on my adrenals PHEW,,

    I JUST HOPE NOW THAT ALL THESE HORRID SYMPTOMS WITH SUBSIDE as i have two weeks and have to return to work,, and the thought of that in the state i am in was a nightmare,,, oh well,, i wish i could say its been a nice break but te summer and all its wonderful events have just sailed past me without me even recognising them or paying any heed to what was going on as i have felt too rough, and just slept as i cant sleep properly any how, so i catch it when i can and the exhausted feeling one has on a daily basis with this is something i hope the rise in meds will help ,, i just hope ive crossed a bridge in some way !!!

    thankyou soo much again another earth angel



  • Your dose is too low and you are going to continue to suffer if you don't raise it, but, having said that, t3 is most likely the med you need the most. If your ft3 is higher in range, you may do more harm than good by adding more t4. You need a free t3 test and reverse t3, that you can order yourself. Also, you can take bio-identical hormone replacements..they are safer and don't carry the risks that the synthetics do.

  • Dear Faith

    this sounds all wonderfull, but will the chemists supply them free as im currently on levo supp for life.

    and will the gp do a freet3 test ,,do i have to ask for all that,and what is the bio identical hormone replacement?

    Not a scubys?



  • Astro, your lab is unlikely to do FT3 test unless your GP is very insistent because your TSH is not suppressed <0.04. GP is unlikely to prescribe T3 unless your endo orders it. If your TSH is still above 1.0 at your next thyroid test your Levothyroxine dose ought to be increased.

    Bioidentical thyroid hormone ie natural dessicated pig thyroid isn't licensed for use in the UK so it's rarely prescribed on the NHS.

  • tHANKYOU Clutter

    hope youve been well.

    I still havent gotten my head round this FT3 thing, and the convertion thing .

    I dont think i convert well , at least i dont feel like i do.

    The meds im given only work for a short while and then they stop, especially pain killers. I think the GP Is giving up with me as he keeps passing the buck and asking me to ask my physio to refer me to a specialist, and my endo just chucked me back to the gps care as he did my urine test and said my adrenals were ok, stuck me on clonodine after saying my symptoms weren't thyroid realted. Back to Gp!!!

    I am feeling a bit better on 75ml levo with taking the anti histamine

    too that helps massively ,thanks so much for that tip.

    I still dont feel back to normal as i am unable to do things at the same speed i used to 3 months ago and i feel this auto immune thyroid thing has changed my life for the worse re work, but ive found all these wonderful knowledgeable earth angels here , who are fantastic,and without them i would be in hospital i think. so again THANKYOU.

    Hope youre well

    Kind regards


  • It is quite possible that your Endo will refuse a free t3 test, because if he believed in them, then he would have done it already, mine did, same with reverse t3. If your ft4 is high in range and ft3 low, then you know you aren't converting well anyway, without the reverse t3 test. You may have to order that yourself..i have had to order many tests. The t3 meds are $15.00 for 25mcgs, 100 of them, i don't know what that is in the UK.

    What is scuby's?

    Bio identical Hormones are ones that are identical to what a human makes, usually made out of Yams and i don't know what else. You would have to get them from a compounding pharmacy, where they make them up in the store. Google it to find out more, i actually don't know much, but use them myself, which is unlike me to do, it's just that they are safe.

  • Well first your TSH level is high, it shoud be around 2 or lower. Second with Hashimotos and those symptoms looks like you have a severe case of adrenal fatigue or (hopefully not) Addisons disease. Those symptoms looks like low cortisol. If you can, check your cortisol level with saliva test (4 times in one day), I haven't but what I have done is to take licorice extract when I feel very tired during daytime and it also rises my body temperature (do you feel tired during the day and awake at night?) and begin tonight a sleeping routine (go to sleep and wake up early) and take adaptogen herbs to help balance cortisol (holy basil and ashwaganda) and those symptoms go away or calm down most days.

    Have you checked if you have poor t4 conversion into t3? what are your levels of free t4 and free t3? have they checked iron and ferritin? have they checked for thyroid antibodies again?

    Don't worry about your weight untill you don't manage adrenal fatigue, probably you have insulin resistance and if you try to lose weight you will just get your adrenals worse.

    And very important: find a good doctor. You can find lists of doctors who treat thyroid properly in these groups in Facebook: ThyroidChange, Thyroid Sexy and in the web of Stop the thyroid madness.

    Also supplements you may consider to take (I write in capital letters the ones that have caused a great changed in my symptoms): MAGNESIUM, LICORICE ROOT, VITAMIN C, LIFE EXTENSION ADRENAL ENERGY FORMULA, MELATONIN and 5HTP or SAINT JOHNS WORT (don't need these last 3 anymore but were useful and take them sometimes if needed), selenium, vitamins B complex, vitamin D, glutamine, omega 3 fish oil.

    And consider changing your diet to paleo diet, when I did my energy and hability to focus came back almost all the time (I have bad days if I don't follow a sleeping routine or if I exercise too hard).

    I am goint to paste some links that have been very usefull to me in case you don't know them:














    Wish you good luck and don't give up!! read some success stories to cheer you up! and find a good doctor!

  • Dear Montegon5ra

    My Gp says low cortisol is as rare as hens teeth!!

    i do feel very tired in the day especially if i have increased stress, as it sets me back days,,

    i am awake all night and find it really hard to sleep,

    i will ask the doc about iron and ferratin, and low conversion, but im wondering about taking water retention tablets as now i seem to hold on to a great deal of water which i never did , but i do take b 12, and iron and zinc and all the vitamin supliments and cod liver oil and omega three and and various other supliments vitamin wise ,vit d and k and calcium ,

    i must rattle withthe amounts of supliments.. i also take sage and eve primrose as it coppies the oestrogen hormone that i seem to to vastly lacking in,,,

    I am sorry to ask so many questions but this auto immune thing is really complicated and seems to affect the whole body ,,and im exhasted trying to learn what i can to try and get my poor little exhausted self back to health ..


    I do like all the herbal alternatives but they are expensive and my salary is not that great and i try and stock up to balance everything but i need to support my son whos salary isnt good and we both need to eat ,, and at the moment i have to go gluten free which is more expense but again a limited diet as i find anything gluten just cripples me,,

    thankyou so much for your help



  • Most doctors ignore adrenal fatigue till it is Addisons disease. You have clear symptoms of adrenal fatigue and should treat that too. Supplements are expensive but licorice root extract is not and begining a strict sleep routine is free. Also stop eating sugar and foods with sugar, coffee, high carbs. Maybe try paleo diet.

    Do this to check for adrenal fatigue



  • Dear montegon5ra

    Thankyou , my endo did ask me to do a 24 hr urine test for that and thankfully it all came back normal..

    I dont know the paleo diet , but i love licorice,

    Sleeping is a bit of a prob as i find that difficult at the best of times and when i was well i only ever used to sleep 4 hrs a night any how,

    Now its stupid , i hardly sleep at all.


    Kind regards


  • Make sure you don't take iron or calcium withing 4 hours of your thyroid meds.

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