Need some advice please!

Hi , I've been back and forth to my go over the last year for numerous things ,joint pain, carpal tunnel , tiredness,not being able to lose weight,constipation,lower back pain ,longer periods, pain in my neck , glands popping up, cold all the time , eyebrows hair falling out , they have ran routine blood test after suggesting I could have hypothyroidism and said they came back normal , they prescribed me with anti depressants , I am not depressed so went to see , another doctor who knows me better , I wrote all my symtoms down and said I wanted to no the full results of bloods ,she said my tsh was 3.6 which is normal but said last year it was 1.6, they will not run any other test because of the normal results , apparently the range in my area is 0.4 - 4 .

after being on this forum and reading other stories like my own , I really do think I have a problem with my thyroid , I have a strong family history my mother , gran and aunt all suffering with it, I would be so grateful of any advice on how to even get a diagnosis , I am willing to pay privately for blood test I just don't know where to look to have them Thanks

26 Replies

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  • Omg you sound just like me, my dr has said I have ME. I have put a post on tonight Please help! Let's hope the more knowledgable people can help. X

  • I read your post earlier, it's grinding me down , I'm fed up of feeling like this , but I don't know what to do about it, I'm banging my head against a brick wall with my gp and I don't know enough about thyroid trouble other then I tick the boxes in 99% of the symptoms , where do we go from here !? X

  • See my response above to Bevs.

  • Before the blood tests were introduced along with levothyroxine, people were diagnosed according to their clinical symptoms and medicated with natural dessicated thyroid hormones (NDT) until they were well.

    Since the blood tests were introduced in the 60's it has slowly revolved so that the doctors who have trained today are only taught about using the blood tests alone and have lost their skill in diagnosing by clinical symptoms, or at least paying attention to them.

    One of our favourite doctors, Dr Skinner, died last year of a stroke brought on no doubt by the GMC's asking him to appear in front of them (not Dr S's patients complaining) for prescribing on clinical symptoms and giving medication. He was pursued by the GMC for seven years.

    This is self-explanatory and Dr S tried to get a meeting with all Endocrinologists to discuss with them (how he was taught as a Medical Student). He invited all of them and the ALL refused to attend.

    So, you see, it would apper they did not want to be knowledgeable about the Thyroid Gland and its functions or non-functions or enable the patients to recover.

    Since the introduction of the blood tests and levothyroxine, new diseases were named, ME, CFS and Fibromyalgia. My view is that these symptoms, if they didn't have a thyroid gland dysfunction, that the prescribing of thyroid hormones on a trial basis must have had a good effect on the patient.

    worldthyroidregister.com/Go...

  • You appear to have classic clinical symptoms of hypothyroidism. The problem is that in the UK they have been told not to medicate us until the TSH reaches 10, never mind that your symptoms are prominent. Some advice from Thyroiduk.org:

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/about_...

    In the USA many get treated if there TSH is at 3. We seem to be quite barbaric in that the doctors ignore clinical symptoms in preference to the TSH which is from the pituitary gland in the first place. The never or rarely check T3 which is the active hormone we need for our metabolism to function.

    You may have to have a private consultation if GP doesn't come up trumps. As well as checking your thyroid gland they should check Vitamin B12, Vit D, iron, ferritin and folate.

    Usually you will have a higher cholesterol - another clinical symptom which thyroid hormones reduce. I don't think they are aware of that but are willing to prescribe statins. Depression is another clinical symptom. When you have a blood test for thyroid hormones, always have the earliest possible appointment as TSH is highest then and may mean the difference between treated or untreated.

  • My usually hi cholesterol jumped up to 370 I'm on synthetic 0.125.feeling weak slow.blood tests were level.could the stress I'm under creating a storm with my blood pressure too.it is 120 over 78 ::/ 95 :/ pm .can you actually become adrenalin exhausted from stress...I'm a 8 year c survivor so chemo raises the cholesterol too.any ideas

    .suffering daily blinding head pain and tired.stress levels very high 8 years last

  • Hi 10705

    I am sorry you are suffering so much. The first thing to do is get a copy of your latest blood tests, with the ranges and post on a new question for comments. Always get a copy/print out of your blood test results for your own records and so you can post if you have a query.

    If you haven't had a blood test recently, get a new one as early as possible NOT having taken levothyroxine until after it. Just say you are unwell and need a new test. Also ask for vitamin B12, Vit D, iron, ferritin and folate if you've not had them as we are usually deficient.

    Don't take other medication or supplements after levo until 4 hours have elapsed. If you have eaten a two hour gap either side of levo is necessary.

    My personal opinion is that if your cholesterol is very high, you are not on an optimum of levo for you. Cholesterol is a clinical symptom which should reduce with levothyroxine, not statins.

    This is a link re blood pressure and hypo:-

    thyroiduk.org.uk/tuk/diagno...

    Regards

  • I spoke to a friend last night and the head pain,face and jaw pain,appears to be related to my heart.seeing a cardiologist on Monday. Thank you.

  • I hope everything goes o.k. It's good to have a heart check occasionally.

  • Thank you

  • I've no idea why the replies seem not to be in sequence. Never mind.

  • Thanks for your help , have you any idea where in the northeast I can get the t3 test done please

  • This is a link for blood tests and some can be done through the post. I think one of them does pin-prick tests. Other tests your local lab may be willing to draw blood if necessary, maybe for a small payment.

    thyroiduk.org.uk/tuk/testin...

  • With a tsh of 3.6 you do have a problem with your thyroid.

    The problem would be treated in every country in the world except the uk, where you may be treated when the tsh reaches 5 or 10 depending on... Err... The whim of the doctor aparantly.

    you can get a full thyroid profile, plus iron, ferritin, d3 and b12 by dealing direct with the labs yourself. They send you a testing kit, comprising of either a sryinge and a container for blood, ( you find a hospital or vet or dentist to draw your blood) and you send it back to the lab. Or they do finger prick tests, where you stab your own finger and squeeze blood on to a patch which you send to them. ( I think the blood draw is easiest and the leat painful)

    The doc probably won't take any notice of your tests, but you can use them to shame him into doing further investigation. and at least you will know which tests you need him to redo.

    details of private testing are under testin on the home page. Www.thyrouduk.org.uk

    Xx g

  • Thanks for your help x

  • Have a read of this:

    rcplondon.ac.uk/sites/defau...

  • Hi Bevs

    I was exactly the same as you & doctors let me go at least 10 years before I got answers privately. 10 years previous a specialist said I had antibodies & my thyroid was working hard to keep up. Eventually I started getting loads of infections and blacking out. I asked the doctor to refer me myself as my mum had thyroid probs. I went to a private endo and she looked at my palms which are always red like mums & she asked me to hold my hand out and it was shaking very finely - which I had noticed but thought it was just me! She said these were symptoms also my eyeshad so shine or life in them. I was border line too something like 4.2 & the cutoff was 5 but she started me on levo & I am loads better although cholesterol still v high & high BP but that comes from my dad.

    Do try to find a good endo I live near Manchester uk & if you are near me I can give you the name of mine. I hope that you get sorted.

    Castlepoint

  • Hi

    I am near Manchester and would love the name of your private Endocrinologist as I am thinking of having an assessment privately, I have given up with NHS blood tests - I think it all comes down to money and not opening the floodgates of millions of people needing extra medications, very short-sighted as of course we cost the NHS more in the long term, but that's the nature of things now. Anyway, enough ranting, please the name would be lovely!

    Suexx

  • Hi,

    A lot of what you're talking about sounds much like me with the glands being up, low back pain, the shakes & appalling tiredness. I was diagnosed underactive some years ago, have never felt well since but have also recently been diagnosed with severe growth hormone deficiency. I've just started a 9 month trial of treatment for that under Salford Royal who have been very good. There's a lot of useful info on the Pituitary Foundation site that might be worth checking but the hospital said that my GH will have failed before my thyroid.

    Hope you get an answer soon,

    Cath x

  • God do your symptoms sound just like mine were. That was 2 years ago to be exact. I have 2 sisters with underactive thyroid and a brother and a father who had pernicious anemia, which is related, but stupid as it sounds I related none of my own symptoms to that when I went to see my GP. I did not think to tell him and guess what I was diagnosed with tennis elbow because that was the most painful part of my body that was presenting itself at the time. So I had pain killers which did not work. Fortnight later back I went with all the other very tender aching joints which you seem to have too, dizzy spells in the morning on first getting up. Cold all the time, weight gain. I don,t seem to remember it affecting my hair or eyebrows in anyway but I have read on the forum it can. Numbness in my heels that is were it first started, and carpel tunnel syndrome running down into my fingers very painful at times, tingling and numbness in all my extremities, I actually thought I had rheumatics or something even worse, felt so bad.

    At last I had the luck to see a good young lady doctor at my usual surgery, who sent me for tests, and it was confirmed that I was off the scale with my underactive thyroid, but not until I presented her with a list of all the ailments I was suffering at the time, and of course my family history helped somewhat. My advice to you is go to another GP not your regular one, and ask for a new set of bloods, insist it is an early morning appointment, as that can make a difference to your results. I was steadily monitored every 6 weeks and going from 25mcg Levo with immediate good effects eventually taking me up to 125mcg in 25mcg bites at a time until I finally got rid of the buildup of inflammation in my body. I feel so much healthier these days and so much more energetic. Oh and by the way I gradually lost 1 stone without even trying.

    If your GP is not responsive ask him to refer you to a consultant who is. You just cannot go on suffering like this it is very detrimental to your future health.

    Good Luck and bless you as I do know what you are suffering believe me. x

  • Thank you for your great advice , my gp has been saying I have osteoarthritis for the last year and suffering carpal tunnel I had the operation on my hand in July and it's now in my other hand ,in less then a year I've gone from a fighting fit 41 year old to a frumpy gaunt lethargic women that feels 71, I wish I could take you all in with me to see my gp , she makes me feel like I have two heads ! Xx

  • I have had the same symptoms for years and been told they are fibromyalgia and arthritis but I feel sure there is a thyroid problem as my hair is thinning rapidly, nails breaking and flaking all the time, heels hurting, etc.........

  • When I read your symptoms I thought I was reading my own post they are so similar!!

  • I've given up on my doctors I'm taking vit d and b complex and gonna sit tight till my bloods hit my doctors range as I'm 100% certain it's my thyroid , I've just returned from my holidays and I usually tan really easy this time I didn't and just got spots where the sun has hit my skin this is another symtom of thyroid but my doctor still won't act on anything till my bloods hit 4 and there 3.81, hope you have better luck x

  • I've given up on my doctors I'm taking vit d and b complex and gonna sit tight till my bloods hit my doctors range as I'm 100% certain it's my thyroid , I've just returned from my holidays and I usually tan really easy this time I didn't and just got spots where the sun has hit my skin this is another symtom of thyroid but my doctor still won't act on anything till my bloods hit 4 and there 3.81, hope you have better luck x

  • I can,t stand this diagnosis of depression that the doctors hand out when they are baffled, especially when people are not depressed at all, just suffering pain and unable to perform the simple everyday tasks that most take for granted. Get your list of ailments and your family history together and armed with that find a good consultant if doctors are not helpful. I just cannot for the life of me think what else your present symptoms could be other that Thyroid.

    Good Luck x

    P.S.

    It took me 3 visits seeing a different doctor each time to get my underactive thyroid treated. I was well over the scale by that time and had many nasty symptoms to contend with. Do we really need to get that ill before anything gets done. I have a great lady doctor now, she listens and she was the one who read the tests and treated me correctly. Finally got my life back. Just persist,persist, persist.

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