At what age were you diagnosed (on the NHS) - Thyroid UK
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I was diagnosed with over active thyroid at the age of 38yrs although my initial symptoms were those similar to an underactive thyroid (chronic fatigue, puffy face, weight gain). I received carbimazole for a short period which was like a miracle drug. Then low and behold was recalled by the Thyroid Register for a test and was told I was underactive and have received thyroxine ever since.
I have been hypothyroid for 11 years and have still not been diagnosed by the NHS. I have had to pay privately for all my treatment and my GP now reluctantly takes twice yearly bloods and still frequently asks what is Armour thyroid and why do you take it?! I am only happy that they go along with it and don't challenge the treatment as I either seem well to them or they don't have the time or inclination to do anything different.
Hello I am new here. I wrote to Thyroid Uk because I have a lot of the sympoms and so far the standard thyroid test is "normal" but it feels as if I may have low thyroid I am so slow, tired and gained weight. I have an appt with my GP next Fri to try and ask for further tests;I was sent this support group advice from Lyn Mynott at T.U and looking to meet people I can talk to about the treating and diagnosis process. Hope to here from someone
Dear Bunny,
Keep at it - you are not alone. As far as I can see virtually all of us have great difficulty getting the diagnosis and treatment we need. ALL GP's, Endocrinologists etc have been told by the Royal College of Physicians (and so their own colleges) to NOT treat people who are "borderline normal yet symptomatic" but to look for some other reason for the low mood etc (like depression). GP's are not being allowed to use their clinical judgement. They have no real choice because if they go against this advice they run the risk of being disciplined if caught - sometimes even struck off. This leaves patients with a false dignosis of depression and/or CFS/ME with all the stigma and prejudice that goes with it. I myself have been on 150 mcgs of Levothyroxine (hypothyroid) for about 2 years now. Despite "normal" bloods, I remain exhausted and depressed and have now been diagnosed with CFS. I have no idea what a scan is, nor a specialist, nor a support group. I have never had any advice from the NHS about managing either Hypothyroidism or CFS. I am feeling very fragile at the moment and don't really know what to do - there just seems to be no support out there. I know this all sounds very negative but please don't give up trying. Firstly, you may have a really good experience of NHS support. Secondly, we must keep at them. If we don't we condemn ourselves to a life of difficulties and future generations to needless suffering. We owe it to ourselves and them to persevere. I would love to get some information about past historical medical mistakes (eg Thalidomide) so that I can remind the arrogant so-and-so's that they are not all infallible - no matter what they would like us to think. When you are feeling suicidal and no-one seems to care, you finally realise that if you don't help yourself then no-one will. I am just SO glad to have this website as it is great to talk - I just hope all of you can put up with my irritability right now. - It will get better.
Good luck Bunny. When you get the right diagnosis and dose, you will slowly begin to feel right again. It took me over 6 months (and perhaps a year before I felt like myself again). It may be worth pointing out though that if it remains untreated for over a year, you run the risk of retaining some of your symptoms permanently, albeit at a lower level. You may also be more vulnerable to stress as a result. If you GP isn't listening - either go to another one - it's sometimes the only way - or ask for a second opinion. Also, I found it very useful to read Dr Arem's book The Thyroid Solution.....it covers most problems we have re diagnosis, treatment and management for both Hypo and Hyper.
Take Care and keep at it.
I was diagnosed in feb with very high levels (x4) of thyroid hormone - this was discovered after a test to see why my blood sugar control (I'm a diabetic) had gone haywire. I never expected it, but had been feeling awful for ages and thought this was menopause. My symptoms were weight loss, irritability, panic attacks, fast pulse, neck pain on exertion and general batty-ness. I thought I was going bonkers, so was a bit relieved to discover it had a physical cause. I was put on the 'block and replace' (carbimazole and thyroxine)regime, which I'm really not enjoying - nausea, fatigue, depression, bad guts - with a 50% hope of going into remission after 6 months. 2 months into it and some days i feel hopeful, other days I could just howl my eyes out and hide away. (not really possible with 5 kids still at home!) glad to find this place, though.
question - does anyone else suffer migraine - never had it in my life before, but started lately.
Jane, sorry to read of your suffering, I send my sympathy. I am fortunate that I don't suffer from migraine but thought I would let you know that Dr Sarah Myhill was on a TV show recently and I watched it online, you may find the details on her website but she was saying that migraine sufferers are often magnesium deficient, she said that in New York there is a migraine clinic and sufferers can have a magnesium injection and their migraine immediately disappears.
Hello. I was diagnosed with hypothyroidism about four years back as my mum had carpul tunnel syndrome and had to have surgery. I did the research for her and found that it is genetic. I had a test done to see if I had it and hey, presto I did! After four years on 100mcg per day, my gp has now upped my dose to 125mcg per day. The problem is I still feel knackered all the time, fall asleep in the office most days etc.
<b>Updated on Jun 10 2010 12:48PM:</b> Amongst my symptoms are depression, anxiety, difficulty losing weight, lack of interest in hobbies etc, severe lack of concentration, memory shot to hell, very dry skin leading to excema.
Apparently, when I was born, the midwife did a 'napy' test to test for iodine deficiency and hypothyroidism and I am told that my heel bled and bled but they did nothing about it. They told my mum nothing, so my diagnosis was missed even at birth! just something for mum-to-be to watch out for!
Hello. The recurring theme with all of these comments is the lack of help from the NHS. Bunny is absolutely right. Specialists and GPs are running scared because the GMC is hunting down all doctors who think for themselves and diagnose by symptoms not the blood tests which have proved so ineffective.
They have therefore FORCED many of us into expensive private care and/or self treating in order to get better. Those of us who are now feeling better MUST highlight the deficiencies of the NHS in order to help those who are still struggling for a better life.
Suze, thanks for your suggestion re migraine (and sympathy!) will check that out. Originally my gp took a quick look at my levels and started writing a prescription out for thyroxine - I had been consulting 'dr google' in the meantime and said 'no I think I have hyPERthyroid - he did a double take and said 'ah yes you're right!' Good job I told him - adding extra thyroxine to my already meltdown levels probably would have given me heart failure I reckon! my consultant at hospital was really really good and on the ball though, but I had to wait forever for an appt.
CAN YOU PLEASE ADVISE ME AS TO BLOOD TEST INTERVAL FOR LITHIUM CARBONATE?I HAVE BEEN USING LITHIUM,THE POISON,FOR SEVENTEEN YEARS AND WOULD LIKE CLARIFICATION AS TO WHAT BLOOD TESTS,KIDNEY FUNCTION(DOES THAT INCLUDE/MEAN CREATANINE?)LIVER FUNCTION TESTING AND THYROID CHECKS?I SET OUT BELOW MY CURRENT MEDICATION.
LITHIUM=1200MG
CARBAMAZEPINE=1000MG
QUETAPINE=400MG
MY THYROID HAS BEEN ATTACKED BY THE LITHIUM SO I NOW TAKE 100 MICROGRAMMES OF EUTHYROX.IT IS NOW SIX MONTHS SINCE I ATTENDED HOSPITAL FOR A PSYCHIATRIC VISIT OR TESTING.I HOPE YOU CAN HELP.THANKS PETE.
I was diagnosed as hypothyroid in 1999 but I'm pretty sure that it started in 1983 after my second child was born. I was diagnosed with ME/CFS & possible Fibromyalgia until my T4 finally went under range and I finally got treated for what had been wrong with me all that time. So many wasted years! 
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i was diagnosed in ireland when in my early 20s, but i had been suffering since i was about 12 with hyperthyroid symtoms. I had a subtotal thyroidectomy in England in 1990 and i did not need any medication up until 2 weeks ago when i was diaganosed hypothyroid, i am now on 25 mcg but i have not noticed any difference so far, can anyone tell me how long it will be until i see a difference?. I am having a blood test in 6 weeks to see if the dosage is right. I am 48 years old.
