Officially given up!

Saw gp again today as symptoms of hypo deteriorating daily. Have now been officially told that there is absolutely nothing wrong with my thyroid. She was fairly sympathetic and said there was no point in testing for adrenal or antibodies as my results were so 'perfectly normal it would be pointless'.

My tsh was 3.78 (range 0.35 - 5.0)

Ft3 4.2 (range 3.6 - 6.5)

FT4 14.4 (range 10.6 - 20)

B12 200 (range 180-900)

Ferritin 40.5 (range 10- 200)

So lovely forum thanks for all your advice, shared tears and laughter, you are all an inspiration. My gp says my problems are all menopause so I won't trouble you all anymore with my non existent thyroid concerns. I am 48 years old, can hardly move for pain, am frozen cold, thin hair, nails breaking, so tired I can hardly breathe but hey ho the joys of being a woman, it will pass am told! Good luck to all you genuine thyroid sufferers.

26 Replies

oldestnewest
  • damn those doctors who dont have a clue!! i dont know you nursery but do not give up ? change your docs if you have to? If nothing else stay on here because every single person on here can relate to you some way or another, know what your going through and prob also feel like giving up nut DONT!!!

    One day someone in the medical profession is gonna take this degenarative desease as serious as what it is for alot of sufferers on here...i dont know when but at least on here theres people that can at least sympathize with you & maybe make you feel that your not alone

    chin up & know we at least care

    janey x :-)

  • Sorry only just read your blog from last month , it made me feel very sad and also very angry.i was diagnosed underactive 6 years ago, but had been suffering for years back and forward to doctors lots of blood tests, told I was depressed , would come out of doctors crying.After yet another visit to the doctors, was sent for more blood tests to check thyroid.when I went to clinic, iforgot blood form nurse said I could fill in one my self but she shouldnt really let me.i ticked thyoid box and also tyhroid antibody test.days later rang for my results to be told by receptionist everything ok, and no further action.the following day I got a call from surgery to go see doctor.she told me the antibody test was high and so I had underactive thyroid.as this test is not done automatically if I had not ticked this in error they would still be telling me there was nothing wrong with me.she told me I will have to take thyroxine daily and would be feeling alot better within a week.well no I wasnt, at the same time I was seeing a specilist for carpel tunnel, he actually explained that it was an autoimune disease and that I would have it for life , and could actually present with another autoimune disease at any time.3 weeks later I went back to gp as still feeling awful she said oh it wont be your thyroid , but I persisted and did did more bloods my tsh came back14.75 she then increased my medication to 75 mcg, with no follow up appiontment to see how I was , by this point I was an emotional wreck and exausted I just gave up.i moved house 4 years ago and doctors at same time my brother came back from Australia after living there for 12 years he could see the change in me , and how ill I can be , he told me I need to fight back.over the last 2byears had terrible time ive has kidney stone numerous water infections,pyoderma gangerosum , chronic urtecaria.and angiodema.have been treated abismally by work had to take out greivence with help of my brother, this made me so emotional and angry I just wanted to punch the wall I was so fustrated.my brother advised me to get my medical records, and he came to doctors with me he spoke to doctor and said that as a family we have seen a deteration in my health and thatwe would be taking things further if nothing was done.he also stated how could I be treated properly when therewere no cconsistency with my care as I never saw the sams doctor.following that appiontment .I have now been to see an endo who has given me t 3 and have had doctor phone me at home on several occasions.but unfortunatley she left the surgery last week.i know my struggle is not over yet endo said havecto go back in 8 weeks if not feeling better it is not thyroid which is not correct.and by the way my maternal Grandmother was overactive as wall as my Aunty. I hope your feeling stronger, please dont give up.take care

  • I agree with Janey, nursey. You mustn't give up! Your bloods are not perfectly normal, far from it. Given that a 'normal' TSH in a 'normal' person is in the region of 1.25, yours is much too high. The problem is that it is still in the cursed range! And your doctor cannot think out of the box and see that this is too high.

    Your frees are both too low. Far too low for you to feel well on. But she doesn't know that because she hasn't been taught that at med school. But if it's any consolation (think I've said this before, if so, forgive me for repeating it) it's only going to get worse! One day soon, that TSH is going to be out of range and then they won't have any excuses. I know that's not much consolation, but...

    As Janey says, change your doc if you can. Try and find one with an ounce of brain! lol But whatever you do, don't give up, please.

    Lots of hugs, Grey

  • There is nothing "normal" with those blood tests. If you were in the US you would likely have been diagnosed hypothyroid with a TSH above 3.5. Your T3 and T4 are also low in the range so I can imagine you are feeling pretty awful!

    Your B12 is very low. You really want it to be above 500. You could try a sublingual B12 supplement of somewhere between 1000mcg to 5000mcg (I take 5000mcg daily). This will likely be contributing to your symptoms too.

    Your ferritin is also rather low in the range. You might find you benefit from taking an iron supplement too. B12 and iron are very important, it is believed, in order for your body to use thyroid hormones.

    As to her comment about it being a waste of time testing your adrenals - I respectfully disagree. Just because your other blood tests are within range it does not mean you do not have a cortisol issue. Unfortunately I have recently learned through a very knowledgeable member on here, that the NHS serum cortisol test doesn't really tell you much and that a 24 hour saliva test (unfortunately private) is the best way to know.

    You ARE a genuine thyroid sufferer.

    There is also the issue that everyone has their own "normal". These may be "normal" results but it doesn't mean they are normal for you! It's like the analogy someone posted on here a while back. I could wake up at 5ft4 tall tomorrow. That is well within the normal range for a woman but it is not normal for me! There would be a serious issue if I suddenly woke up 2 inches shorter overnight, lol!

    Please do look into the B12 and iron issues. Do some research and perhaps try supplementing. This may help to improve how you feel somewhat (but probably not completely). Also, if it is true that you don't have enough B12 and iron to use the thyroid hormones effectively, you might find your blood tests become more hypothyroid "on paper" which might help persuade someone to prescribe you a trial of thyroxine.

    Also keep hold of any blood test results and look for any trends. It may be that your TSH starts to increase and will eventually be outside the normal range.

    I don't know if this is an option for you but if you can't get an NHS doctor to prescribe, Thyroid UK have a list of private endocrinologists that are very good.

    Please don't give up. Your hypothyroidism is just as real as anyone else's on here. We're just lucky enough to get abnormal blood test results... eventually. It took me a good few years to be diagnosed but I am there now :)

    Take care

    Carolyn x

  • Nursey

    Your B12 range is very, very low. You are nearly below range. I suggest you supplement with methylcobalamin B12, either sublingual or tablets. Low B12 can cause many similar symptoms.

    A healthy persons TSH is below 1. Why cannot they understand clinical symptoms?

  • Thank you all. I did mention that if my result was out of range you would ttreat me and bring it down but it's ok for it be be 3.78. She touched my arm gently and said 'it's not your thyroid'. I will supplement though as I so want to be well. Anyway, must go I have a pile of leaflets on hrt to plough through.

  • ....sorry to intrude but why are you having to plough through HRT leaflets - is it part of your job or are you considering taking it ?

    Hope you soon feel well.....lots of good advice for you - thankfully.

  • Doc says my problems are the menopause and has asked me to have blood test for this. She gave me leaflets about the different types of hrt. She refused blood test for thyroid antibodies. I had the blood test today to try to rule it out. I still have periods and have never had a hot flush in my life. I wish, I am usually freezing!!

  • ....I'm 67 this year and was only diagnosed with Hashi's in 2005. However my instincts told me to stay away from docs during menopause as I knew they would whip out my uterus ( fibroids ! ) It may just be me but I think women have had a raw deal since the launch of HRT. It's just another quick fix that GP's can hand out making even more money for BIG Pharma.

    Mostly women go to the GP at menopause because they are feeling low in mood, lacking in energy and often with some weight gain....same as UAT. So in my humble, non-medical opinion most of them needed the thyroid treated and that HRT skews it all even more with even bigger imbalances within the endocrine system

    Having your hormones tested may be a good idea as the doc has suggested - you may find you are oestrogen dominant - which seems to happen with UAT. A little Progesterone Cream may just help to bring balance

    Hope you are feeling warmer soon.........

  • How awful.. this is why I want off to Dr BDP and ignored the NHS.. having had one spat.. and found I had four other conditions... the thought of another tedious, energy sapping journey...was a frightful thought...I hope you can find some help! Mary F x

  • Iam so sorry for you. These idiot Doctors are costing us not only our health but ruining quality of life. No wonder we are forced into private medicine. As Dr Skinner said to me "what does your Doctor think is wrong with you ?" Very poignant words. Keep fighting and good luck. These stories are appalling xx

  • hi all it all comes down to costs all meds are free and some gps dont like to give out free meds they think its from there own pocket.and goverment dont want everybody with hypo diagnosed coz they think everyone is going to jump on e.s.a or mobilaty just my opinion

  • I also told her my sister is hyperthyroid and my mum had Addison s. Again she emphasised my thyroid is 'good' and it's the menopause. So lovely forum friends, night night, off to my bed now. Hope you all have a lovely Easter weekend with lots of yummy chocolate. Xxx

  • If your mum has Addison's (which, I believe, can be autoimmune? - I'm sure someone will correct me :) ) it would definitely be a good idea to get your adrenal function tested! Please keep fighting this!

    Carolyn x

  • Although Addison's is hereditary only rarely (and usually shows in childhood in these cases), the causes of Addison's are often hereditary conditions. Please do fight to get this checked out.

  • I asked but gp refused said wasnt necessary as my electrolytes were normal. Money a bit tight a moment but will investigate private.

  • Actually, I probably won't, it won't help as she won't recognise tests. I need to focus on my family etc and try to look to the future. X

  • I'm so sorry to read about your difficult time.

    I would also suggest making a written complaint to your medical centre.

    As you have symptoms and a high TSH, you will not be well enough to focus on your family for long and the best way to have a better future, is to fight this and the GP. Your TSH isn't going to go away or get better on its own.

    I'm wishing you lots of luck.

    x

  • Put your complaint in writing and enclose submissions from the Scottish Parliament petition. They have to investigate your complaint and it won't look good on their revalidation.

    Even if you do decide to change to another surgery, it's worth putting in writing your dissatisfaction before you switch.

    Good luck.

  • Hi Sorry to hear of your bad experience, the ones I have had would fill a book. You need to go on until you are happy that you are having the right treatment.,to feel well.

    Have you had a FBC? as your B12 is on low low side. It shows the B12 in the cells. Symptoms are very similar to Hypo.The foliates are normally done with the B12 and they need to be.It is autoimmune too. Also Vit D ( hormonal)?It took me years to have the correct treatment, so do not give up.Would the GP refer you to an endo? They would test these and other things and if good treat your thyroid symptoms. Make sure endo your choice not the GP`s.Most good consultants are not ruled by blood tests but just consider them. I know that is how all mine are.

    Best wishes,

    Jackie

  • If you want to be referred to an endocrinologist, you have every right to be so - legally. You can state that you are unwell and that your clinical symptoms match those of a thyroid problem and that you wish to eliminate this as a cause through a specialist in the field. You have the right also to request to see an endo of your choice - anywhere in the country.

    To gently touch your arm and sweetly reassure you it is not your thyroid is to treat you like a neurotic child - it's patronising. It makes me angry to see how someone can be very gently put in their place when they are still so very unwell. Before you can concentrate on your family you need to be well. Go for it, girl. You fight for your health.

  • I've never yet heard of the menopause actually killing anyone... However, hypothyroidism CAN and DOES if it's ignored! Fight for your rights and if the patronising b*tch doesn't afford you the treatment you're entitled to, go somewhere else for it. An FT4 reading that low would be ok if you're TSH was below 1 and your FT3 was at the top of the range, but your combination is just WRONG!!! Never give up fighting, you CAN get through this and there are a lot of us here who are willing to support and help you all the way! :-)

  • My results were very similar. My mother was hypothyroid which added a bit of back-up to my concerns but the GP was similar to yours. Basically he thought I was eating and drinking too much, should move more, was menopaused and prescribed diet, no alcohol and antidepressants. My husband joined the diet with me. He lost 8kg over 3 months and I lost 1kg. Muscle pains, mood swings, brittle nails, hair loss, black eyes, exhaustion.. and the anti-dep. tabs sent me into anxiety attacks. He ordered Xrays for the muscles, lungs, a liver scan and when these returned with only minor arthritis, persisted in saying my blood was within range.

    I asked him how he knew what was 'normal' for me. I told him I was hacked off that my diet had produced zilch and I still felt terrible. My voice had begun to croak then too so I got a throat camera job. Clear.

    Went to another GP in the same practice and poured out my angst - though praising GP1 for his thorough, step-by-step elimination of cancers etc. She listened, treated me like a person, said,'Oh but an antibody test hasn't been commissioned..' and set one up.

    Result - lots of antibodies. That was two plus months ago. I was given 25mgs start on levothyroxine for two months then re-tested. Lovely GP left - tears- but she passed me on to a similarly favourable GP in the practice who has increased dose and is commissioning a scan of my gland as the voice still sounds like a bullfog-squeak. All is not perfect but it's a huge improvement on 8 months ago.

    Do not give up or give in to the dim, the insensitive or the undertrained. Look for someone better. Arm yourself with knowledge and argue the case or bring in a trusted ally to support you. All power to you.

  • Thank you everyone. You are all so kind and generous to take the time to reply. I am going to go through all the advice so thoughtfully given. I am still unsure as I have no energy, no will. Its all so exhausting. Happy easter all. Xx

  • Hi

    I shan't add any more info - you have plenty to think about but my insiduous ill health began at 46 by 48 I could barely walk having lost control of my leg muscles and weighing in at an extra 2 stone. Terrbile pain and IBS symptoms etc etc etc.

    Because my bloods were 'normal' for thyroid but of course low for menopause then just as you EVERYTHING was put down to menopause. It is now 8 years later and I have had a life from hell. Months of no sleep and months of joint pain with no energy etc.

    Alas, no antibodies for me and yes, I do accept that menopause can irritate a poorly functioning thyroid that is otherwise hanging on for dear life but NO - I will not accept that eye-brow loss, swollen tongue and muscle weakness are signs of menopause.

    Just last month once again it was a 'really it's not your thyroid' smile as I asked once again 'should I really feel lke this. HRT is out for me.

    If and that's one big If GP could say just anothe ryear and it will all be over you'll be back to your old self then maybe I could take some hope but she can't even say this.

    Private bloods last week showed a similar picture of course but the suggestion was 'probably subclinical thyroid' - so what do you do?

    I'm on the verge of finding the cash for a private endo but still wondering if I've just been unlucky with a bad time as my ovaires shut down.

    If I could turn the clok back 8 years and be 46 again I'd have fought them tooth and nail. You know yourself better than anyone. Don't let them win.

    x

  • I think it's ok to give up on taking GPs seriously, the sooner you do that the better you can help yourself - you'll be extremely lucky to get any sensible diagnosis or treatment options from the NHS currently.

    The NHS is a brilliant thing and a superb ideal, but we are far from that when medical science is so far off the mark regarding our treatment.

    The only things that have got me better are things I learned and specialists and treatments I paid for myself.

    Cinnamon Girl's ideas are good mind you, if or when you have the energy and will to fight and protest.

    Good luck. A x

You may also like...