HELP BACK TO SQUARE 1

So my results for a battery of tests is normal!!..will somebody please tell me what normal is!!

i have my hypo symptoms back with a vegenace! was .7 my TSH in dec and when i demanded to know what this one was its 1.8! so yes i know its going up you know it ism but as it comes within normal levels as set by the lab im ok..the extreme hair loss,brain fog,dry skin,tireness and cold are all what in my imagination!

please what do i do i never ever want to be ill as when i was diagnosed hypo dec 11 and a tsh of 19.75.

Now on 75mg of levo and i think we should try 100 on alternate days as i seem great on levels below 1.....the gp needs to listen as i am FAR FROM Normal...

im gonna make an appoinment tomorrow and ask for all the results of all the tests i had...and i also paid at Harpenden today for my T3 T4 etc as im really unwell.....so tired of fighting xx

10 Replies

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  • Jayne63, dont give up! I am new to all thia so cannot give clinical advice but all I can say is you know at what level you feel well and you must fight to get well. This forum has been so supportive to me so I hope you can feel supported too. I hate it when doctors say 'normal'. Wonder how many of them are hypothyroidism - or their wife! !!! Might be different then if they felt so poorly ans someone told them it was normal. if their wife was hypo they would soon want to get her libido back!!!!!

  • Yes, we're just fellow sufferers and cannot give clinical advice. But....

    folks report a hair loss connection to low ferritin? - have you had vits and minerals tested? as these tend to be low too. (irons, ferritin, B12 folate & Vit D)

    I especially harp on about vitamin D as I feel so much better since supplementing, and as I don't take anything else it must be that. (wrist, elbow pain, hand/arm numbness, muscle spazms & ribcage pain too - all better at the mo for me - still cold, tired & fuzzy -headed 'tho)

    Keep fighting! Jane :D x

  • 75mcg levo is a very small dose to have achieved in a year from diagnosis in Dec 2011. Your doctor should have been raising your levo from a (presumed) starting dose of 50mcg, for about 4-5 weeks, then raising the dose checking with blood testing until you reached your optimal dose, where your symptoms eventually resolved, which is usually higher than yours. He has been making the mistake that so many GPs make, of keeping your TSH in the reference range. Most treated people feel better when their TSH is very low in the range, below 1.0

    You have an absolute right under NHS rules to be given a printed out copy of your blood test results by the doctor if you ask. It is your body!

    It would be best if your could exercise this right and post on here the complete blood test results then you could be advised further. It is to be hoped that he is requesting TSH, FT4 and FT3 to be tested.

    You'll find on the main site, loads of information regarding many aspects of hypothyroidism, best to have a good look around on it to gain background.

    Dr Anthony Toft, past president of the British Thyroid Association, has written a book called

    "Understanding Thyroid Disorders" which you might find very useful. Only £5 from chemists/Amazon.

  • HI,

    YES ALL were tested Haemaglobin,B12 Aand Ferratin ,ESR,FBC,Liver function,thyroid function,urea and elctolytes//apparantly according to the receptionist are all NORMAL!

    I went and paid for the T3 T4 today as i KNOW im unwell,...maybe i should collect my hair tomorrow and take it down and show em!...and it was .7 my Tsh in dec and 7 wks later its 1.8 hmmm hello im staring to get unwell.....i am fed up...we go to St Lucia in March after out marriage in dec and Rays cancer getting better..out last holiday was Cuba in 11 and i was newly diagnosed hypo with a tsh of 19.7 so are we gonna get the same rubish...thanks for the support i felt well at .7 now i feel like death,so trat me not the conditiojn please x

  • I wish receptionists would be just that. Receptionists. While it's good they give you your results, it should be the doctor who tells you, so that you can discuss it with him. The Dr Toft book, page 88 is the cosh to use (gently). It clearly states there that to feel well the TSH would be possibly as low as 0.3 and some feel well when it is even lower.

    I strongly recommend you get the book and take it with that information highlighted as well as the big red box on the same page which says the test results should not be interpreted in isolation but should be backed up with clinical examination - look at the patient, not the computer screen!

    My doc reduced my T4 to 100mcg because he thought I was overmedicated, but when my TSH was 1.4 I was extremely ill. He has increased it at my insistence armed with the Dr Toft book. Only 25mcg extra but already much improvement.

    Hope you can convince your own doctor. Courage, mon Brave! (sorry, ma brave!)

    Marie XX

  • Hi First you definitely did the right thing getting T4 and Free T3 done, makes sure you have the ranges.you cannot be properly or adequately treated without those. Any strain eg partners health does also effect the thyroid badly Ask for or your ranges as a docs " normal" often is not!Some times they do not even look at them properly.

    Best wishes,

    jackie

  • Yes I am there with you... my bloods are also normal but I feel far from normal. I do not understand why there are so many of us out there who feel ill even though we are being 'managed within the normal range'! Doctors do not seem to know this is a common complaint of this condition. I have actually been told that 'your symptoms have nothing to you with your thyroid' but.... Why would the exact same symptoms that presented before I was treated, that were caused by my thyroid, now have nothing to do with my thyroid. I find it all very draining and frustrating.... Good luck and best wishes...

  • Well im in bits...my MALE GP has told me that my present symptoms are NOT MY THYROID!

    Jayne im looking and your well within normal ranges so lets get this righ out of your head now ok!!

    Now i am not saying your symptoms are not real but they are mot thyroid related!

    What so the extreme hair loss,tiredness,cold and dry skin are not thyroid related?..No Jayne its not possible..so do you know how to read to the levels Jayne as lke i say yours are very good..so you are 49 maybe its the menopause...well i had hysterectomy at 31 but i have no menopausal symptoms..well hair loss and depression are 2 of them and Jayne i see a good head of hair there!

    well do you want to see when i wash it just how much falls out easch time?

    and lets get these next bloods done today eh?...and what did he forget despite there being strong links and i asked as he also said it needed investigation diabetes!!

    erm i got requests for Cretanin,oestrogen and tsh...he refuses steadfastly to increase my meds and did gve me my print outs of my levels but will not listen to me saying when my level was at .7 i felt fine...he says its not on the high of normal ranges!!

    im looking to have my results back next week and i will see Dr Allistone but not until 15th feb..im dreading seeing my male line manager for supervision next tues a im gonna get a rocket about how i am again...but put in a professiional way..

    I have my TSH ref ranges from nov 11 to now if that helps ok i will out them on.

    28.11.2011 T4 11.6 pmol/L (9-22.7)

    06.01.2012 11.6 pmol/L (9.22.7)

    31.01.2012 16.1 pmol/L (9-22.7)

    20.02.12 19.1 pmol/L (9.22.7)

    20.04.12 17.6 pmol/L (9-22.7)

    22.O6.12 15.8 pmol/L (9.-22,7)

    03.12.2012 15.2 pmol/L (9-22.7)

    29.01.2013 17.5 PMOL 9.22.7)

    Means nowt to me

    TSH

    28.11.11 19.7 mu /L range (0.35-5.5)

    06.01.12 18.6 mu/L SAME

    31.01.12 8.94 mu/L

    20.02.12 1.67 mu/L

    20.04.12 1.32 mu/L

    22.06.12 1.01 mu/l

    03.12.12 0.7 mu/L (FELT REALLY WELL)

    29.01.13 1.37 mu/L feel awful

    Comments welcomed next move?xxx

  • Jayne

    You may want to post this last post as a new question - comments can get missed. :-)

    Louise

    x

  • thanks love x

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