how long did it take to get your diagnosis ( any thyroid) curious to see

Hi i posted last week that had alot of on going problems which im sure are thyroid related spent nearly 4 yrs being pushed from gastro to urology to urology to renal, hes carried out alot of blood tests resulting in a long wait (Sighs) however im just curios as to anyone that has thyriod problems how long did you have to wait until you got a diagnosis, days-weeks-months etc, since im seeing a hospital renal consultant this could take several weeks odd as he was going to go through my entire 4 yr past history blood/tests and wait for new bloods so he could try and end my 4yrs of hell since no one else could ....i always assumed no new is good news however ive learnt thats not always true as ive had written results months later stating i needed treatment tablets such as antibiotics and was left waiting ages, so my question did you get told in a matter of days weeks or months......

thanks :)

27 Replies

  • About six months, being fobbed off by various different doctors and even when a rheumatologist suggested I have a thyroid test, that came back as normal. Of course I now know that "normal" is not usually to be accepted. I have learnt a lot! Strangely the so called normal blood test has mysteriously disappeared from my records. Funny that!

  • tnxs hennerton, trying to get info on how long it took seems to me that it takes a different consultant to find the cause/problems have had 4yrs of hypo symptoms but tsh in 2010 was 2.33 told normal, they thought it was urology problem -all fine then now was sent to renal who is saying he's certain its auto immune or thyriod or diabetes so done a massive blood panel still waiting 4weeks so far, i hope he can give me a answer, i no its not diabetes blood glucose is fine, ive done so much research im sure its thyriod, just wanted to no how long it took to be told or get a diagnosis

  • About 4 years from first visit to GP with hoarse voice. Told nothing wrong. No-one in the four years, did anyone do a thyroid gland blood test despite seeing various different Specialists.

  • cheers shaws, yeah in 4yrs ive gone from gastro-urology now renal , he was great straight away he said this is not ur kidney its auto immune etc waiting for results as massive blood panel done, fingers crossed i get answers but just so silly how 1 consultant that doesnt deal with that area can come up with ideas that ur previous consultants and gps dismiss , all i ever get is yes you have a problem but we have no idea what it is.........unhelpful when 4yrs im still stuck in a rut

  • it took me nearly six years of constantly being told i was just depressed...i kept trying different doctors until i found one who listened...his wife had a similar problem so he had experience of it..he has been amazing and says even though my results were borderline he believes in listening to the patient and the symptoms as we know ourselves better than anyone else...dont give up xx

  • At the end I was so desperate I said to my GP I want to pay for a full body scan as something is seriously wrong. He said I will do a full blood test and duly phoned me about 4 days later very reassuring saying there was nothing wrong. Before that a ENT had a barium swallow taken, proudly pointed to the X-ray (which I now know is where my thyroid gland is) and pronounced 'see that - you have a post cricoid web' if it's not removed you will most likely choke. Underwent a procedure and I had NO web. Another ENT said acid reflux.By now was so ill, was kept in overnight in the Cardiac Dept, ran on the treadmill had everything checked and discharged with 'probably viral' but was bed-ridden by now. Fortunately a first-aider suggested thyroid gland had a blood test at 8 a.m. and by 10 a.m. GP phoned and gave me the diagnosis 'hypothyroidism'.

    It took about another 3 years to finally find my way round the maze, thanks to Thyroiduk.

  • im glad you got a diagnosis i only hope i do ,i think because my problem started with a kidney infection im sure the meds started something of or all the dyes they injected me with coz after the infection so many symptoms built up and i think they just assumed it was kidney related rather than looking at other things i can only hope this renal doc can give me a answer and not another oh well yeh your bloods show all this so you have something wrong but i dont no, goodbye .... i just want a real answer

  • My thyroid function was tested without my knowledge back in 2011 and was said to be high. My neck swelled up within 2 months and when I went back to my GP with difficulties swallowing they were going to refer me to a counsellor! They refused to test my thyroid function any more and so I changed GPs at the start of this year.

    I was tested for thyroid antibodies which came back high and my TSH sky-rocketed within 4 months. I was diagnosed with hypothyroidism in May 2013 so just under 2 years, but I've yet to be diganosed with Hashimoto's despite the high antibodies.

    Jo xxx

  • its crazy how they let people suffer, my bloods always show up things but never a answers in 2010 i said could this be thyriod tsh 2.33 then they said no not that, but renal doc seen 4 weeks ago i noticed as i walked down to blood room had a sneaky look at what he'd ticked.....almost everything hope when he ticked thyriod panal it means the whole lot there was also pth test not sure if tpo was in there, i was thinking at one point hashimoto's but not sure now, my bloods are always sky high in white cells and inflammation markers etc also had low b-12 in 2010, so hes running a panel on that 2 ive to go back in jan, but didnt know if he would inform me before or wait till i go back, i suppose if its borderline he might wait till i go back i dont no

  • It is terrible Mich, yes. I was in tears when I was told I had an autoimmune process going on in my body because my fears were proved right - after months of being told it was in my head re the swallowing problems and also after years of joint pain they told me it was in my head.

    There is hope out there - I spent so many months going to different GPs about my ongoing symptoms that I went to my "usual registered GP" and she offered to refer me. It wasn't even much of a battle to get it out of her. Hang in there, something good will come out of this, I'm sure. It did for me. :)

    Best wishes

    Jo xxx

  • jo can i ask what your symptoms/signs were , did your bloods ever come back with constant raised white cells/crp/ anything inflammtion wise , and b-12 ?

  • Hi thanks for your reply.

    Yes, of course. I've listed my symptoms below:


    Joint aches/pains


    Daytime sleeping/napping


    Intolerance to cold

    Intolerance to heat

    Episodes of flushing

    Back/rib pain

    Eye puffiness

    Pain behind eyes

    Mood swings


    Leg heaviness


    Heavy periods

    Swallowing problems

    Recurring hoarseness

    Early periods

    Recent test results inflammation-wise are:

    Red blood cell count - 4.94 (3.80-4.80)

    Plasma viscosity - 1.9 m.P.a.s (anything below 1.8 I think as no ref range given)

    Thyroid antibodies (not sure what ones or the ref range) - 84Kiu/L

    Vitamin B12, Vitamin D, antibody profile and folate is being tested next week (as never been tested for these) as well as a retest for plasma viscosity and ferritin.

    Jo xxx

  • my symptoms are

    constipation on/off


    gritty eyes and pain

    numbness and tingling in legs/toes/fingers

    muscle pain/weakness

    cold all time

    cant stand the heat

    back pain/loin pain/flank pain

    abdo/rib pain

    puffy eyelids on/off

    dry skin ezcema on face/head


    bruise more easily

    dry mouth

    cant sleep well

    fast pulse

    mood swings

    in 2010 i had rapid 3stone weight gain lost it but now stayed same cant gain cant lose.

    my results always show wbc over 13,400

    neutrophillia 9,900 crp 13 (nr<5)

    viscosity 1.99 (nr upto 1.72) also urine shows protiens and wbc over 500 so there always seems to be alot of inflammation but been tested for all the common things which is why i thought maybe its a auto immune thyriod problem

    forgot to add my hair is dry dull and falls out and my eyebrows have thinned and started to dissppear and when i eat somethings it doesnt go down and i have to cough it up (sorry)

  • Yes, my constipation is on and off - more so since I went gluten free for a week and have started eating normally again. The constipation is slowly creeping back in but not every day.

    I did have infantile eczema when I was little but I have acne on the forehead instead of eczema. For me it could just be my hair as it's very long.

    I used to bruise very easily but I haven't yet - I think that's probably because I haven't had any accidents lately!

    I empathise with your weight - I was 7.3 stone at the start of the year, which was slightly underweight from the problems swallowing and from what I ate. I was on a diet of tomato soup, Dairylea slices and fromage frais yoghurts because that was what I was most comfortable eating. I did weigh 8 stone in October but now I'm down to 7.10 stone again despite eating more foods high in starch, carbs and protein. :(

    My GP said my plasma viscosity seems to be connected to the high TSH I've been getting as it's an inflammatory response.

    Jo xxx

  • thanks jo youve been very helpful, i go back on jan 27th so hopefully i will get answers as to what is going on , its always good to speak to people as i didnt even no there was different thyroid problems, i think all the yrs of diff meds etc has maybe set something of as b4 this i was fit and healthy etc im 29 now and feel 92

  • Mich I'm 28 and I feel so much more slowed down than I used to. It is good to speak to people and I never knew I had a thyroid condition for 25 of my 28 years. I think the thing that set it off for me was when I had surgery in the summer of 2011. I needed it done as my condition was affecting my mobility and I came out of that operation with so much more life. I'm sure it made my immune system go out of whack.

    Have you actually been referred to an endocrinologist now or are you still waiting for that? If I were you I would push for one via your GP. I did that through a letter and my GP today has put me forward for an endo referral. Try it - you may never know!

    Good luck

    Jo xxx

  • no im under the renal consultant at the moment as gp thought it was kidney related but the renal doc said my kidneys are fine and hes certain its auto immune so on the 4th nov he ran a big panel of bloods that included auto immune thyriod glucose liver and kidney there were some i didnt understand and some i wrote down ena ana LFT PTH cholesterol rhemiod arthris sorry cant spell it and loads others related to either thyriod and other auto immune, ive always been prone to infections esp ears keep rupeturing in last yr, but otherwise healthy until 2010 they had me on 5 diff antibiotics diff times but for yrs made me sick plus had numerous dyes injected and swallowed for scans , he just said hes based at a diff hospital so he was going to take my 4 yr history back with him and old tests and wait for new bloods and try and figure out what it is

  • No worries about spelling. :)

    I'm prone to colds - my nose even gets blocked and runny when I wake up each morning. I don't know what that's all about! I've only had one dye test, IV, and that was an MRI scan of the head/neck with gadolinium (I had to get the spelling for that!) I haven't been on many antibiotics apart from Amoxiclav for a dental abscess and Trimethoprim for a bladder infection.

    Going back on my trigger it might either be the surgery I had or the course of corticosteroids. Either way I have it now.

    That was very good of your consultant to take your history back with him along with the old tests and wait for your new bloods - there are some doctors out there willing to go the distance.

    Good luck and I hope you get your answer soon!

    Jo xxx

  • tnxs jo hes been the best so far and acknowledges there is a problem one only hopes he finds it, i might be back depending on results,its not something id want but if it is that or something else at least i can move forward and treat it

  • No worries!! If you choose to post the results up there'll always be someone around to help you. Moving forward with my health and treating it, is my outlook exactly with things going on with me. :)

    Jo xxx

  • It will be 10 years in May since I first went to the GP. In the interim I have seen an oncologist, an allergy specialist, a neurologist, a haematologist and have had 14 (yes 14) endo appointments. Still, the only diagnosis I have is CFS and a sleep disorder, but now very much better on levo after two nightmare years on T3 only. This morning I was waiting for a letter of referral for Dr Skinner. Quite what I do now, I'm not sure.

  • im on no meds all my problems started with a simple kidney infection it was only after i spent yrs of diff antibiotics and dyes for ct/mri and camera up bladder etc that all my symptoms appeared and felt like rubbish :( i dont no what to do so banking on this renal consultant to prove hes right about it being auto immune or thyriod etc so i can take the next steps

  • About 30 years of symptoms before anyone thought to check my thyroid, despite previously being wrongly diagnosed with lupus during pregnancy, which miraculously cured itself, and macrocytosis for 25 years possibly longer coming up on blood work, but was always put down to being an infection of some sort, and depression for nearly 30 years, also 2 head injuries (explains a lot.. lol)

    Finally diagnosed in 2010, still not being treated properly and still fighting for an endo apppointment despite having swallowing difficulties and pain, choking and hoarse voice, thats when I can even talk . I buy my own armour or I probably wouldnt even be here by now.

  • mine got blamed on infection as bloods always showing raised wbc and more, yet been tested for most things all neg plus i dont feel ill i just dont feel my normal self that i did previous to all this, its a nightmare, well if renal doc cant find the problem i might try and look for somthing online as 4 yrs is taking the mick im not waiting another 4 yrs, i feel sorry for those that are still waiting for answers and treatments

  • It took gps 8 years for my graves to be diagnosed and that was only when the goitre was protruding from my neck. My symptoms started at age 14 and it was always put down to my age!!

  • after 5 years of being told there is nothing wrong with me all my blood tests normal, fell ill whilst on holiday, taken to hospital diagnosed within 4 hours( Hyper) with large toxic multi nodular goiter that was extending into my chest cavity, tt operation 8 weeks after diagnosis wonder what would have happened had i not gone on holiday ?

  • 1976 to 2004 were my wilderness years. I pray to God I never have to go back there

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