dr's tomorrow hoping to change meds.....HELP!!!

im on 50mcg levothyroxine last TSH 5.2 need to book the works on blood hopefully but i feel so ill on levo my heart is racing constantly headache going from hot to feezing cold terrible mood swings/temper very tearful entire body hurts from head to foot and just feel like im going to die any time soon or something really bad is going to happen

throat scan showed very small thyroid he said thyroiditis

still to be confirmed by dr....referral made to hospital for 24 hour hear tape

what medication other than levothyroxine is there that i could ask for that will be prescribed

19 Replies

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  • Are you sure it is Levo affecting you? It may be that you are not taking enough, as your TSH is high. The symptoms you have may be those of hypothyroidism. You may also be low in various vitamins and minerals. First to be checked should be a full iron panel, as you may be anaemic. This is common in a hypo person. Also B12, Folate, and Vit D. It is difficult for the body to deal with Levo if any of these are low. Your doctor may laugh at this idea but they are not generally well versed in nutritional supplements but all those tests should be available on the NHS. Finally a full thyroid test would help to see what is happening, meaning T4 and T3, together with reference ranges. If you are seeing an endocrinologist, he should do all of those. If, eventually you find your T3 is low, but T4 is high, you could ask for T3 to be added to your T4 (Levo). Hope your appointment goes well and if you get the blood tests done, post here and someone can comment,

  • im allmost certain its the levo as before i started i felt fine then within a few weeks my breathing got worse my heart was pounding all over the place and just a general feeling of being ill. The only thing my dr ever checks really is TSH and mine is in the normal range but i will ask for all vits ect to be tested too and hope she agrees. Not been referred to an endo yet

  • If your TSH is within the normal range and you felt fine why were you prescribed it in the first place?

  • when i was first prescribed levo my TSH was 10.2 but i felt ok it since being on the levo i have felt like death......my heart rate is hardly going out of the 80's today

  • It's hard to tell whether it's the Levo not matching your system or the raised metabloism causing the discomfort. I didn't like Levo and felt it was wrong in my system- but I'm fussy about meds...

    If you get to go on T3, with or without T4 this may settle out- but T3 may make your heart rate higher again.

    Note that 80 is note a high pulse rate for many, but instability can feel worse at higher rates due to stronger pulse [metabolism]. How is your BP?

  • 80 makes it feel like my chest is going to pop open....i started taking selenium last night with levo so maybe that will help with the t4/t3.......as for my blood pressure i dont know but something off with it as keep feeling light headed and dizzy (like when you have been spun real fast on a round about when you was a kid...kind of drunk feeling) and its not when i stand from sitting it happened last night while in bed too so will make sure thats checked today

  • Good luck with app, I went back and forward to docs for years, after gaining some knowledge off very nice people on this site I am getting there, I have just started T3 only stopped my levo, so my fingers are crossed this will work for me, good so far, it may not be the answer for you, just saying don't giv up x

  • Thankyou Princessze......im not holding me breath yet but another dr did say a while ago there was something else they could give me if the levo didnt agree with me. But the dr im seeing today told me a few weeks ago i shouldnt feel ill as my levels are fine and that shes hyp on 175mcg levo and has never felt ill.........with a bit of luck shes done some research but from my scan results it leads to hashis which has not yet been confirmed by the dr so will ask today. DOes that make a diff to treatment?

  • I don't know what my problems were or are I just know I always felt unwell even after starting treatment on levo 15 years ago, getting worse about 5 years ago no real quality of life but trained myself just to push through every day as my family relied on me so much, stopped levo once and realised how well I felt what normal must be, told doc and endo, there reply was it was all in my head and levo was only treatment, so went back on it , a year later back to the way I felt, stopped it again and again felt well , went to docs several times in the year just to get same answer, then after coming on this site I went back armed with a little more knowledge, got to see a new endo have had lots of bloods done, vits ect and t3 and t4 for the first time in 15 yrs, they have not commented on results, I have them ( need to look into that) , they just said its up to me if I want I can stop levo an take t3, asked for there advice and instruction but they just said it's complicated , so I have made the choice just to take t3 , looks like I will have to look into it more myself?, only on day 4 but I'm feeling good so far but I know very early days, my TSH was once 199, 75 at the moment, yours maybe different story, but keep trying x

  • Hello Mandy,

    What is happening to you is what happened to me, after seeing a private Dr - I was advised that when i was taking the Levo, not all of it was getting used up, so it was building up in the body being usused - creating Hyper like symptons.

    What could be happening is the Levo dose is too high, or maybe you have low adrenal reserve, the conversion problem or maybe the receptor uptake is not yet as good as it should be. Maybe an ASI test would confirm the Adrenal function & DHEA Levels, if you have the conversion problem then you may want to try T3, and if it is the receptors then supplements can help and also have a GTT test to check you stomach acid levels, along with checking Glutton intolerance and blood sugar x

  • does'nt thyroiditis cause a swing between hypo and hyper?.......but saying that ive not felt well since starting levo

    im due bloods soon so will ask about everything else getting tested too

    i know at my last bloods they said i was borderline diabetic but do need to mention that today as i pee for england now and allways thirsty

  • I am the same - I put mine down to water rention & adrenal Issues. Do you have Hashimoto's Thyroiditis?

    If you are getting Thyroidtoxicous then you get those symptons. I don't think you can do the ASI test on the NHS, they do the Synacthan Test which only shows up Addisons Diease not Adrenal Fatigue - They will tell you differen't of course. i wished I hadn't requested the Synacthan test as it went against me

  • when i had my throat scan the guy who did the scan said my antibodies were attacking my thyroid which was very small and that i have thyroiditis

    ive not had confirmation from the dr yet as ive not been seen but will ask today (im going by what ive found from the net and what ive been told ob various groups)

    what is thyroidtoxicous? sounds quite scarey tbh

  • Hello Mandy, Thyroidtoxicous (not sure my spelling is correct) that is when the the thyroid medication builds up in the body unused and causes hyper like symptons - That is very nasty, I put up with that for so long before seeking private help. My pulse was at worst 125bpm, I was sweating, had trouble breathing, sharp pains in my chest and various other symptons. It is important to stand up to the docs - good luck

  • wow kitten sounds quite scarey

  • Hello Mandy,

    It certainly is, so much so that I don't take my Thyroid Medication unless it is essential. Hope you get on ok with your Docs

  • end stage thyroiditis (sounded scarey until i found out i wasnt going to die)

    dr couldnt explain what it meant]

    finally got a referral to an endo which can take up to 2 months

    said i can stop levo

    take half dose

    take full dose

    i asked for propranolol for my heart rate which she took and it was 85 and she said thats a good rate and thats when i broke down and told her it feels like its going to pop out of my chest so she agreed to the meds 10mg once a day which i took last night and have been short of breath since which is a side affect (dr allso knew ive been short of breath on and off for a while) so not sure if the meds or not

    heart rate stayed at 60-70 which it was a while ago and i feel comfortable there

    im making a guess im going from hypo to hyper

    she allso made a point of letting me know i had seen every dr in the practise complaining of feeling unwell to which i told her i am unwell

    today ive noticed my tongue has teeth marks

    still waiting on 24 hour ecg

    she assure me my heart and lungs were fine a few weeks ago on the chest x ray

    so now its just a waiting game for me

  • Hello Mandy,

    I really feel for you & I assure you that I am in a very simillar situation to you, I waited 6 months to see an endro and he was worse that the doc - we had an arguement, he couldn't provide answers to my questions. They always reach for betablockers or ecg's. In my case it is clear that the medication is making me hyper. I do get annoyed with the docs and what we have to put up with. Please be careful Mandy, it sounds like that are just passing you around as they don't know what to do. I have changed doctors and I am waiting for an appointment to see a really good doctor - he is a strong charactor and will always do his best to help and what information I get I will pass on to you. Their is light at the end of the tunnel. Have you tried other forms of Thyroid Medicaton? take care

  • Thankyou Kitten in a bad way its good to find someone whos going through the same as you

    i just feel fobbed off all the time with the drs

    i need to go in tomorrow as the meds they gave me messed up breathing which dr knew i suffered with

    im allso looking into getting some vitb12 as palps and shortness of breath is a sign of defficiancy

    today im quite bad and anxious and i hate feeling like this i just want to give up

    im really hoping the endo is going to be worth the wait and not as useless as a wet paper bag

    ive only ever had levothyroxine as my dr is convinced its not making me bad as it dont have side affects allthough i have read the side affects

    i guess its just a waiting game now

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