About to undertake Hypothyroid diagnosis battle with my Dr - help please!


I have had symptoms of hypothyroidism over the past few years and these have gradually got worse. I am constantly tired and fatigued, my hair is brittle, I have gained over 2 stone in weight, I suffer with depression and anxiety. I also get night sweats, hot feet at night, am intolerant to cold and have just been told by my dentist that I have a scalloped tongue! I get joint pain in my hips and hands and have been told by a physiotherapist that the muscle strength in my hands is extremely weak. My Mum, Auntie and Great Aunt all have hypothyroidism .

I have had 2 tests recently and I have just managed to get the results of them to see for myself. The first was in August 2012 and the only test they did for my thyroid was the TSH test. This came back as 1.7 (range 0.27 - 4.2). I was diagnosed Vitamin D deficient in that test too. The second test was in March 2013 and my Vit D level was fine (after taking supplements) and my TSH level was 3.4 (double the previous test). Both tests results were deemed "normal" despite my symptoms and no further follow up was arranged.

I am due to see my Dr again in 2 weeks and I want to be as informed as possible as to what I should be asking her. Should I ask for a T3 and T4 test? Should I use the jump in TSH levels and symptoms to argue my case? I am so fed up with feeling like this and the thought of a potential battle in order to get diagnosed is really daunting.

Thank you for any help!

11 Replies

  • This is the usual battle. You are not alone, as can be seen from other posts. Yes, why not ask for Free T4 and Free T3, together with the TSH and have a list of all your symptoms, noting whether they are getting worse. If you still get nowhere, I think the only route is to see a private consultant but you probably still need a referral in most cases from your GP. You could try asking for a referral to your local hospital endo dept and you may find a jewel of an endo that will be on your side, regardless of what TSH is. Good luck! Keep fighting. You will get help eventually. xx

  • I think your first paragraph (even without the latest blood tests) summarises very well many good reasons why your GP should test for FT4 and FT3 and thyroid antibodies as a minimum. You might struggle to get the FT3 though as they have cut back on this and many labs don't do it even when requested. The rising TSH supports all this as does your vitamin D deficiency. The strong family history should ring alarm bells and with your symptoms, they have a duty of care to investigate further.

    If you don't feel confident experessing this face to face, would it be an idea to put this in writing (you write very well) booking an appointment and handing the letter in beforehand saying you would like to discuss the contents during the appointment and have the letter filed in your records? I would even go so far as to request they consider a trial of thyroxine.

    The other option is to get private tests as others have done. However, I would do that after trying the first step if that fails because some doctors seem threatened when presented with private test results and then dig their heels in.... disgraceful in my opinion but it does happen.

    Its frustrating we have to go to such lengths to get basic diagnostic tests done properly let alone adequate treatment.

    Wishing you well.

  • I would suggest you first follow this link so you know what tests are available:


    also that page has a link to a long list of hypo symptoms, you could print it out, tick off those you have. Take this with you, have it put on your file as a record of your symptoms.

    Make sure blood is drawn for this next test as early in the day as possible, the TSH has a circadian rhythm and is higher in the morning than it is later in the day. Your TSH has risen each test, you have symptoms, ask her to test at least TSH and FT4 and run an antibody test for thyroid peroxidase antibodies as you might have Hashimotos.

    Next, buy "Understanding thyroid disorders" by Dr Anthony Toft, BMA publication only £5 from Amazon/chemists, Dr Toft past head of the British Thyroid Association. Pp 41-42 sets out how early dosage and titration should be done, and P 88 has good if short paragraph on Judging the correct dose of thyroxine.

    You have a right to be given a copy of any blood test once the GP has seen it, just ask, there should be no difficulty. Please post results with the vital ranges here for advice.

    Best of luck!

  • I am exactly the same!

    I got a diagnosis of cfs from my quack, which I deny.

    I changed gp for one that actually listened to me, and agrees that it doesn't sound like cfs, sent me for early morning bloods as your hormones run on a circadian rhythm so needed to be done as early as possible. She rang the local walk in centre to get me done at 8am this morning.

    I hope you get through to the doc, and get more tests done and treatment sorted.

    Good luck

    Ann xx

  • Thank you all so much.

    I have typed a word document with details of my 26 symptoms and some further information on each of these to help explain them a little better to the Dr. I thought perhaps this would show how they affect me and would not be so vague that the Dr brushes them off.

    I have also made a note of the 3 tests that you have all recommended and I also plan on asking if a referral to an Endocrinologist would be possible. My Dr has always been very nice, but I do not think she is the type to venture away from what appears to be GP uniformity on this issue unfortunately.

    Thank goodness I have found this forum! I will definitely post any further results and/or Dr issues on here for your advice in the coming weeks and months ahead.

    Wish me luck! : )

  • Thanks Ann

    It really shouldn't be this difficult and daunting to get help should it?

    Let me know how you get on and if you have any tips for me if you are successful in your current battle!

    Best of luck with your current test and new GP



  • Thanks Heather, I will let you know how I get on. I go back in 3 weeks for the results.

    Ann xx

  • I sympathise as you have all my symptoms ...you are describing me ! I was found to be vitamin D deficient & I never realised how important that vitamin could be to ones health. I had deep bone pain could not let my little dog sit on my knee without pain ...after 6 months treatment the deep bone pain has vanished. Have you had your vitamin B12 checked ? have a look at the pernicious anaemia society web site ..every symptom that we both suffer 'could be linked to P.A which is an auto immune disease !

  • Hi

    Thanks for your reply and suggestion. I have just been on to the PAS website and some of the symptoms do sound like mine, but more tend not to - but I will definitely ask my Dr if my B12 was tested. I am pretty sure it might have been, as my initial blood test in 2012 was a full vitamin, blood sugar and thyroid check to see if they could discover why I was tired all of the time.

    My Vitamin D levels are absolutely fine now, but unfortunately none of my symptoms have improved or changed because of that.

    My Dr's app is on September 5th and it can't come soon enough! I am desperate for her to actually listen to me and I am hoping that I don't come up against a brick wall as I am fearing.

    Thank you so much for taking the time to reply - I am very grateful.

  • In the USA, a TSH reading of 3.4 would be over limit. Not in the 'up to date' UK though!

    Time it was reviewed- I don't know how the top RCP people can justify a much higher limit here. We are the same basic stock of people after all.

    The other thing getting missed by GPs is that hormones in blood are not necessarily going to be in tissues esp.if other problems exist- and they usually do, in people after middle age.

    By the time one gets to elderly the mantra changes to-"You're getting older- live with it"

    Ching! - as the cash till closes on £100K salaries, shorter hours and no call outs. Nice.

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