when should you give up fighting?

Ive sat here for a while looking through blogs and questions with one question over my head????? when do you give up fighting to get a diagnosis, my tsh has been rising its now 1.73 (within range) my ft3 5.0 and my ft4 11.0, i have been told my ft4 is low from others on here and other places and my ft3 should be mid range and that the tsh usually lags, the problem is i dont think im ever going to get anywhere!

Im sorry i just think im having a bad time right now and i dont think at any point im going to get the help i need.

i have a thyroid nodule, i have a scan every 6 months followed by seeing a endo a few weeks later, i seem to go between hypo and hyper and feel ill each and every day, im mentally exhaused and i feel im not being listened too, they are currently checking my heart as i get palpatations and heart flutter then they are going to send me to ear nose ans throat because of my dizziness and vertigo, so when they going to go more indepth on my thyroid, seems like there rather take the extra long route of checking each and every symptom one by one!

I dont want to be here in another few years still awaiting a diagnosis, im fed up with hearing the label......depressed/anxiety/health anxiety!

im tired of being told im mentally unstable!

So where do we all go from here?

45 Replies

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  • Nichola, how dreadful! ........ NEVER give up!!!

    First of all have you had your thyroid antibodies tested?

    Secondly do you have any family members with thyroid disease or other autoimmune conditions?

    Thirdly have you written to your GP giving a list of all of your symptoms? Have you asked your GP for a trial of levothyroxine?

    I would look into changing GP, I would also point out just how much money you could save the NHS as they are treating (or trying to) symptoms and not the cause!

    I battled for a year to be diagnosed (first battle) and am a bit like a terrier. Somehow you have to find the strength to fight this battle.

    Whereabouts are you in the country? Could there be someone who lives locally who would be able to recommend a doctor?

    Please don't give up!

    Sue

    thyroiduk.org

  • im in somerset united kingdom!

    I just feel that im fighting a losing battle they are going the long way and are going to test me for my symptoms one by one, do my blood work up above look ok?

    Im going to do the thyroid antibodies test privately, ive visited ent they said i had a sign of a balance problem, im currently having heart test i have a scan on my heart friday.

    Today ive completed my blood glucose test as my blood work came up slightly high so they wanted to test for pre-diabetes.

    The doctor said she will check my symptoms one by one but dont you think that is a bit silly when clearly all im getting can be linked to thyroid?

    Also ive been told even though my b12 and folate is within range its still low and someone on here said i should get the doctors done for neglect because even tho im in range im very low on the folate and the b12 you should be at least 500.

    i havent wrote the symptoms down i have told the doctor that i have many of the hyper and hypo and i usually go down to the doctors when a symptom is really bad!

    I feel they look at me like im just a freak and that im just obsessed with all this, am i obsessed am i putting in my head that i have a thyroid problem (i dont really know anymore).

    Im just not knowing what to do to be honest!

    im sorry for the bad posting i just feel like they wont listen no more and this is going to be a long painful road!

  • Nichola, NEVER, NEVER give up until you are well. It is a royal pain in the *** but the alternative is getting worse and that is not acceptable. Keep fighting, change doctors, keep posting on here for support. NEVER GIVE UP PR

  • Im so thankful i have found support forums, thanks

  • giving in should be classed as a Thyroid symptom - it's hard to fight when you have no fight left.(this is me too). but there are many positive posts here too. People DO get better! I'm loads better than last year when I was merely hibernating.

    Keep visiting the GP or change GPs for one that listens, if you don't go they think you're OK - not! I got somewhere with my ENT doc - FNA and partial op - it stopped the palps, anxiety etc (mostly) then dropped into Hypo (which GP says is CFS as my bloods are within range - rubbish co-incidence)

    but I am waiting, I have read up, knowledge is power, and do recognise other stuff is not anxiety or depression - there are other reasons - it's not in my head it's in my neck. (not just me either!) we'll get there nichola, just takes a little time. Jane :D

  • I have quite a bit of knowledge on anxiety and panic attacks because for many years i have thought thats what i had!

    It bugs me that they always put it down to a mental disorder, infact i believed them for a while untill my thyroid nodule came up then i started looking into my thyroid and realised i had loads of symptoms linking with that!

    I do feel i go between hyper and hypo but i didnt realise that was possible untill recently, i just feel they would rather give antidepressants than anything else.

    nichola

  • What is the matter with GPs- I tried going to a female doctor in our practise as I felt she would understand better that although I was excercising and dieting the 2 stone that I had put on would not come off. She said that she would give me prozac but would insist on my having some counselling re why I was so obsessed with my weight!!! I replied that all prozac would do would be to make me feel better about being fat- Being 12st 7lb when 5ft4" is not good. Pre diaganosis with underactive thryroid I was 10 st but struggled to keep at that.

    Missed the point completely- treat the symptoms not the cause. Thank goodness for this forum to keep you from throwing in the towel or hitting someone! lol

  • I do feel like locking my doctor in her room untill she listens :D but i dont think ill get anywhere other than sitting in a cell lol.

    They have dosed me on so many anti-depressants its unreal, i get all the bad side effects and end up really bad, i cant take them tablets (yuk), i wish they would listen but all i get is "well the symptoms your getting is depression" as much as i know depression causes alot of effects im telling myself im only depressed cause how i feel on a daily basis, and other results are coming in as either high low or normal ranges and even then they are saying "no furthur action" :/

  • Just backing Suze up. I learned earlier on this site what she says about verbal information from patient not being on file so made good and damned sure all symptoms of B12 deficiency were printed out and insisted to GP they went on my file.

    I know your folate is low, at 0.3 above the bottom of the range your GP should treat you and it is a disgrace she is not, what is she waiting for?

    You have to keep fighting, nichola.

  • with that folate test it was a complete full blood count, all my doctor said when the results was in was no furthur action, i have the full blood count printed out should i take it to the doctors with me and show her? if so what will i say?

  • Yes, you could take it with you take it with you and show her and say treatment is required for your low folate and if she is not prepared to treat then you require an explanation of her reasons for not treating.

    Personally, having learned the value of a paper trail, I would prefer to do this by letter so that her reasons for non-treatment are fixed on paper. Keep it, file it.

    There are various sites out there which teach you to interpret your FBC, it is better to have more understanding beforehand. Knowledge is power.

    She will probably tell you you "have health anxiety" but just let it roll off your back for then she is being defensive and so attacking you. So much for "investigate, diagnose, treat" which is supposed to be their guiding principle.

    patient.co.uk/doctor/Full-B...

    for really good FBC interpretation help for patients.

  • Ive always been told i have major health anxiety, i think this is why they dont believe me!

  • In sympathy, I spent 6 months going to doc with mood swings, muscle aches, tiredness, a croaky voice, hot feet (!) and he was very cautious. Had me tested for fatty liver, throat cancer, lung cancer. Very prudent and careful but ignored my history - mother was hypothyroid and focused on the above plus depression. I have had two bouts of severe clinical depression in the last 14 years: I know the signs and symptoms all too well and massive mood swings within a two hour span were n't part of it. My TSH was 3.43 and he said that was normal range and offered fluoexitine which I've had before. I gave up and took them. Ended up curled up in terror each morning after only a few days. Called the surgery - nurse practitioner replied and suggested taking them at night, as the fear lessened as the day wore on. I didn't want to double up so missed a dose. Result ! Felt better than before I started them, so stopped and made another appointment with a different GP. Oh and he'd told me to lose weight too. New doctor female, listened and tried an antibody test - positive for early autoimmune hypothyroid antibodies. She prescribed 25mgs of levo and have been taking this for two months. Much improved -face less puffy, muscle aches reduced, still croak like a bullfrog at times but happier. She leaving but has passed me onto a sympathetic colleague for next appointment. Trouble is that she felt she couldn't adjust dosage until it all gets worse so I'm still in there, reading up and keeping notes/records. My point is -don't give up. You know how you feel and it's too easy to be fobbed off with a vague anxiety/depression diagnosis. I was told I was right to stop the antidepression pills and I actually asked my partner to keep a diary of reactions cos I distrusted my own ability to judge changes - that was useful to us both. This forum and the UK thyroid website gave me the impetus and the info. to keep going. Thinking of you. You are a person, not a collection of symptoms, with a person attached like a helium balloon floating behind. Get a listening, smart doctor who's up to date. All the best.

  • wow i could have wrote this myself, i was put on flouxetine and i was very bad with them, i was getting all the very bad side effects within a few days since i have been on citralopram and others i cant really remember!

    Im going to do the private antibodies test myself and hopefully that will shed some light!

    Im so fed up with being told its anxiety and mental health,

    I completed my blood glucose friday so i should get my results back for that in a week.

  • nichola and sadie, please buy Dr A Toft's "Understanding Thyroid Disorders" only £5 from chemists/Amazon, on P44 he explains that raised TSH with "normal" FT4 is sub-clinical hypothyroidism, that about 5-20% develop more obvious hypothyroidism in each following year so says thyroxine is prescribed to nip things in the bud using thyroxine.

    The fluoxetine would make you worse because basically it has a fluorine molecule which is well known to reduce thyroid activity.

    Check everything you are prescribed on the web.

    See:

    fluoridealert.org/health/th...

    but don't take additional iodine, can precipitiate thyroid problems, and Dr Barry Durrant-Peatfield has an excellent paper on dangers of fluoride, find via search engine or main site:

    thyroiduk.org

    Avoid fluoridated toothpast, dental fluoride treatments, non-stick pans (why do you think budgies die if they inhale fumes from heated non-stick pans?) fluoridated water.

    Sadie, nichola, hang in there, with a computer you have accesss to loads of information

  • Incredibly helpful links and comments. Thank you,nostoneunturned and nichola.

  • Primarily addressed to sadiestairwell and nichola 79 - The links to fluoride info:

    rense.com/general57/FLUR.HTM

    and on Thyroid UK:

    thyroiduk.org.uk/tuk/treatm...

  • Many thanks. Just reading Dr D-Peatfield's guide.

  • Nichola, when you tell your GP your symptoms they are not on your doctors notes.

    When you write to them then it is on file. I just kept writing and attaching a list of symptoms.

  • Sorry I don't mean to interrupt but do they really not note your symptoms?this seems crazy.I certainly never knew that you learn something new all the time.

  • Vanessa, what I mean is, is that without doubt they have a record of the full list of your symptoms when you hand them a list or write a letter attaching them. Whereas if you tell them then you probably wouldn't be able to remember them all. My list was huge. When you look at lists either on the Thyroid UK website or other places, you realise that you have some that you hadn't even put down to thyroid.

    For example until I read Dr Skinner's book I hadn't realised this one:- seeing something out of the corner of your eye, like a spider crawling across the room, daft but it used to happen to me :(

  • so when i write them who should i give them to?

  • Yes writing is helpful. It's easy for a doctor to not listen to us - it's harder to ignore something written. I recently wrote. Today I had a very encouraging reply from the Practice Manager who said she was sorry about comments made to me at a consultation in 2012. She has said my comments will be raised at the next partners meeting. You could write to your Practice Manager. Good luck.

  • All I did was type all symptoms, with name and NHS number so nobody could claim they got lost, then at next appointment handed them to GP and said I wanted these to go on my file, he said OK, they would be scanned in.

    You can also enclose them with a letter saying that these are to be recorded on your file and address it to GP or Practice Manager.

  • Write to your GP and attach a list of your symptoms. This helps because then it is in your notes. THey cannot throw your letter away.

    I wrote lots of times and visited every doctor in the surgery, locoms and all, they got the message eventually that I was hypothyroid and that my symptoms were not due to other things! - why? because I no longer have those symptoms!

  • I agree totally with spareribs! Knowledge is power! I did a lot of research and printed it all out, stuck it in a folder and read it over and over again so it was locked inside my head. When I went to see my endo (a fantastic man in Shrewsbury) I was able to discuss my condition, and the treatment I would ideally like to try, with him and he listened because I did have such obvious knowledge. I took the folder with me so that I could refer to it whenever I was a little unsure, but he treated me like a human being, listened and I came away with the T3/T4 combo treatment I wanted. A year on I am feeling 100% better than I was, so NEVER give up. Good endos are out there, but it's no good going in with a vague 'Well, I'm not feeling very well, doctor'... You have to be specific and I also agree with Suze. Write it down in a letter and send it to them to get it all down on record. When you see the doctor he will only enter what he thinks is relevant on your records. I wish you good luck and hope you'll be able to get it sorted soon! :-)

  • Was your blood work in normal ranges? ive been told my ft4 is low? and it is contrasting with my tsh and ft3, my tsh level is going up slowly, started on 0.57 and a few months down the line it is 1.73, i know i shouldnt give up but i feel im fighting a losing battle, i know having a thyroid nodule may not give you symptoms of hyper/hypo but there is more to whats going on with me other than mental health issues.

  • At the time all my blood ranges were 'normal', but we all know how meaningless most of those tests are. My TSH was over 4.5 and T4 was mid range whilst my T3 readings was below mid-range. Now my TSH is too low to measure and my T4 is below range too, but my T3 is right at the top of the range. Gone is the brain-fog and confusion, and the only black dog I have now gets taken for a walk every day! Even the weight is beginning to come off!

  • Do my levels look ok?

  • Unfortunately I am not a medical professional, so I cannot really comment on your levels. What I would suggest is that if your T3 remains constant then it's probably ok, but the fact that your TSH is going up is possibly an indicator that something is changing. However, I can say that the main problem for most of us here is that no-one took our levels before we started having problems with our thyroid and therefore they can't say what 'normal' is for each individual. I have made my 3 daughters have thyroid tests whilst they're still young so that their normal levels are on their records and any future problems can hopefully be flagged up if they happen.

  • ive been told by many that my ft4 is low so im not sure what to do?

  • You have to take ownership of your own body and your health, you can't just allow someone to tell you to take antidepressants or anything else, if you don't agree with the diagnosis. It is your body and you have to live in it, so you need to speak up and make sure you are happy with your treatment. Doctors seem to think that they can talk down to patients, and to make decisions and dictate what must be done. Not so, it is a partnership and you work together to find wellness.

  • I really dont agree with my diagnosis but the doctors look at me like im crazy, im afraid that even if i went with a broken toe they would blame anxiety lol.

    Just need to figure out how to make them listen.

  • Actually - it's "hard skin". Been there, done that, got the t-shirt.

  • If at all possible try and see Dr Peatfield as he is able and kind and knows about thyroid. He is private, and costs around £150 for one and a half hours of consultation. He is very thorough and can help when nobody else will. He also has a good book that is very helpful and explains lots of things, you can get it on amazon or even from the library. There was a waiting list to read it at my local library when I wanted it ! I now have my own copy as a reference.

  • where is he based?

  • put 'Dr Peatfield clinic' in your searchbox, he has a few places you can see him at. He is based in Surrey but travels to visit his patients, the schedule will be online.

  • None of the areas are near me, im in bridgwater somerset, do you have any other you can tell me of?

  • I think (??) Dr P offers telephone consultations for those who can't get to see him. His contact details are here thyroid-disease.org.uk/inde...

    I'm off to see him next month.

  • What do he actually do to help though?

  • Dr P Book - Can buy it here:

    thyroiduk.org.uk/tuk/tuk_sh...

    Or borrow it here:

    thyroiduk.org.uk/tuk/suppor...

    Louise

    x

  • i cant find it on the list can you help?

    im having one of those days.

  • Hi Nichola

    Did you want to borrow it? It's £2.42. Drop a cheque in the post to Thyroid UK, 32 Darcy Road, St Osyth, Clacton on Sea Essex CO16 8QF

    :-)

    x

  • is that the only way to pay? also whats the title so they know what i want?

  • Your Thyroid and How to Keep it Healthy by Dr Barry Durrant-Peatfield

    brilliant book - everyone should have a copy

    (no I don't get commission!) Jane :D

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