They think im mad and need to see a psychiatrist

First appointment to see endo and i was excited as my health has been getting worse, I thought this is it im going to get sorted and feel better, this year is going to be good for me and my family, how wrong was i? I have been ill for about five yrs in that time ive been back and fourth to the doc with diffrent symptoms but she kept saying it was caused by depression so for the first few yrs had me on anti-depressents which i told them i didnt need as i had no reason to be sad and down. At that time i had just got married to a wonderful man and was meant to be happy which i was but it was being dampered by my illness. In the end i typed all my symptoms into my laptop and it came up with under active thyriod so i went back to my docs i had blood tests and found out i had hashimotos disease, i was so relieved, i knew i was ill all along and now i had proof.. That was last feb and i was put on levothyroxine my health has been getting worse and im now on 100mcg but still feel ill and have lots of symptoms. I took a list of these to the endo appointment yesterday, he didnt even read them or the notes i had made he said that my meds were enough and that there was no pill he could give me to make me better i had some blood tests and he said if they come back normal he would be writing to my doctor to advise that i see a psychiatrist, that was it i broke down and couldnt believe what i was hearing. i dont know much but what i have learned is that there is NO NORMAL everyone is different. My symptoms are getting worse and i dont know what to do. Im coming down with migraines,neck aches,weight gain,carpel tunnel, plantars fasciitis,tiredness,hot and cold intolerance,hair loss,sore gums,muscle weakness,mood swings,memory problems,loss of peronality,withdrawal from everyone and everything,irritable,agitated, simple everyday tasks just seem so hard and ive had thoughts of ending my life but could never as ive a 10yr old son that needs me.Its not my life anymore, im not me... I just want the old me back and dont know how.... Any thoughts?????

25 Replies

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  • Hi Julie,

    None of us are normal and while others may think you are mad you or not.

    While I dont have magic fairy dust to make everyone with thyroid problems better, which I would love to do, as you know you are not alone.

    Dont give up if you have any blood test results please post them as other here are very good at offering advise on a possible next step.

    Sending you lots of hugs on this cold day

    Karen x

  • Oh, you poor thing. That sounds dreadful and I think as a first step you should write a formal letter of complaint to the Endo saying he was dismissive of you and his attitude stank.

    As a last resort is there any way you could see a private doctor, ie Dr. S, Dr P? Or even have blood tests done privately?

    I do hope you get some answers.

  • Well I for one don't think you are going mad as all of your symptoms sound like under-treated hypothyroidism and I can relate to many of them myself. In fact my endo told me that my symptoms were not caused by my thyroid, but by health anxiety :( I couldn't believe it, but thanks to the help I received here, I realised he was wrong. Luckily 9 moths later when my TSH had shot up to 59.0 he did say I was my thyroid after all.

    It might be worth seeing the psychiatrist, as they will hopefully be able to backup what you are saying.

    Do you have your latest thyroid test results available to post on here? If so it would be good to post them and get some feedback. Personally I didn't feel we'll until I got some T3 in the form of NDT.

    Clare xx

  • Absolutely its worth seeing the phsychiatrist.... when he declares that the reason for you not being right is nothing to do with your head, that will prove its a real issue. that the endo and doctor need to fix.

    If you are feeling worse with levothyroxine, have you had any tests to see where your thyroid levels are? also, the hair loss can be linked to low ferritin, which happens with hypothyroidism......... ideally you need it to be in the 70's or over..... what level is yours? How about D3, B12? they all make a difference to how the meds work.

    G x

  • I think seeing the psychiatrist is a good idea. At least then you can show your endo that you have tried his way and it hasn't worked.

    Another good reason for seeing a psychiatrist is that a few will prescribe T3 to treat a depression that won't lift. My psychiatrist did this (many years ago) and I made a miraculous recovery, at which point the T3 was stopped. At the time I was borderline hypothyroid (which we all know means "hypothyroid"!) Luckily I was diagnosed not long after this and prescribed T3 as it had been shown to help me so well before, then things went pearshaped with thyroid treatment and I was put on levo :(

    The point is that, if you get a good psychiatrist, you may be able to persuade him to change your levo for T3 or at least partially. See if you can find some research online for using T3 to treat resistant depression and take that with you. Tell him all you have told us. You never know, he may be able to help you.

    Carolyn x

  • Julie this is a disgraceful way to be treated, I am so sorry. I had it too. I didn't see a psychiatrist, I did go for CBT but it was clear I was physically ill and consequently fed up, depressed by the situation, not the black dog clinical depression. I would write and complain in strong terms. This is why we did the petition. People seem to think an endo appointment will solve things and it really is far from the truth a lot of the time.

    I personally worry that agreeing to see a psychiatrist has some kind of long term bearing on your medical notes/diagnosis. I may be wrong, but why should you have to play their game to get well. I felt those symptoms when the levo was backing up in my blood causing high Reverse T3. It may be you are not able to convert. Take a look at the map of medicine and go back to the GP, they are supposed to further test if you still have symptoms (england) healthguides.mapofmedicine....

  • Thanks for the map of medicine lala!

    I left some feedback on there. I suspect it might be read by a computer technician rather than any doctor but what the hell, I felt like a minor rant was in order...

    "I found it very interesting and revealing. I also find the model of care regarding hypothyroidism to be over simplistic and ineffective, as it has been in my case, due inability to tolerate synthetic medications due to toxic side effects. I know I am not alone. As there are no alternatives I'm left to stew with my autoimmune hypothyroidism which ruins my life and prospects. Again, I know I'm not the only one. I think it's a travesty and functional knowledge of this condition amongst GPs and endocrinologists in the UK alike is generally abysmal."

    Good luck to you Julie and I hope you manage to get some good treatment, it's an unbelieveable battle for a lot of us it seems.

    And thanks laladrew for what you're doing - I was very very moved when I watched the parliament footage. I think I want to move to Scotland now!

    Best wishes, Andy

  • Loving your reply to the map of medicine Andy! ;-) I don't know how they can print such things, knowing full well it just doesn't happen.

    Come to Scotland, we can start a revolution!

  • Yes, God knows, we need one of those! Och eye, I'm heading north o the border if it duzny get any better doon here!

    Thanks too to you guys for pointing me to Dr Lindner's hormone restoration website - that's really interesting and given me some hope - my next line line of enquiry / experimentation!

    Funny enough, re the map of medicine, it DOES reflect my own path of treatment, I've been round the houses also with endo etc. and up and down the various routes, but now I'm stuck on one of those dead-end branches at the bottom where they monitor my TSH each year - and that's it - no medication, no further investigation, just wait until I get critically ill I suppose? Then what I don't know, I already know levo doesn't work and they won't prescribe me armour, even though my kind GP has investigated that possibility for me.

    I should post a blog on that really, I haven't been on here in a while. It's quite an interesting letter about the local PCT's view on dessicated animal thyroid - it seems the 1970s propaganda about its unreliability still pervades very strongly!

    Ah well, on we go. All power to your elbow!!!

  • p.s. I wasn't taking the mickey - I love the scots. I think Robert the Bruce had the right idea

  • I know you weren't! ;-) As the great Voltaire said " We look to Scotland for all our ideas of civilisation"

  • Didn't know that!! Right, I'm packing my bags! Most folk down here have got me down as a head case ... just to get back on topic! :-)

  • Andy, I looked at your profile and we have trod a similar path. When I was toxic on T4 my gp trialled me with T3 but same awful side effects as you listed. I'd been on omerprazole for two years (!) which had ruined my food absorbtion and gut, so bought this, amazon.co.uk/SYMPROVE-MANGO... And what a difference it made! Before I was having problems with my Erfa NDT but now it's an awful lot better. It is being used in some hospitals in England for IBS and is really very good. Worth looking at.

  • There a few on this forum who were incarcerated due to wrong diagnosis and it may well affect them in the future if they were ever able to get well.

    If you can afford it, I would go private - it is worth it in the end and if you email Louise.Warvill@Thyroiduk.org she will send you a list of sympathetic doctors.

    Levothyroxine does not work for everyone and this is a link and you can look at the other topics on the top of the page.

    web.archive.org/web/2010122...

    If you get a copy of your most recent blood test results and post again, complete with the ranges, someone will comment. Also, as recommended above, get Vit B12, Vit D, iron, folate and ferritin.

    During the week two women gave their histories to the Scottish Parliament and I attach a link. There are so, so many in the same boat but there is a way forward and we have to read and learn as much as possible, when you realise some Endocrinologist and GP's do not know one thyroid clinical symptom from another. They can condemn people especially those who do not have access to the internet to a life of ill-health.

    thyroiduk.healthunlocked.co...

  • I need to comment, I went to see a psychiatrist, but he did not take on board all my smptoms and I was told I had health anxiety on my records, I challenged his conclusion and he did back off, however this is on my medical records argghhh therfore in my own opinion I dug myself a bigger hole by attending, I fed my g,p, as thats what she wanted to hear.

    its not in your head hun, I have just watched the scottish parliment vidio, remarkable ( please watch)

    if its any concellation, I to and many have been treated with scant disregard and are labelled with depression or some other form of illness, except the one that is in there face. La la drew is correct, on the other hand, when you are well and you will be, you can defend your case. Try not to focus on this, as you are already stressed dealing with your smptoms.

    I have most of your smptoms as so do thousands of people all over the world, so we all must be barking mad. I have days where I want to sling the towel in, I come on these forums and recieve very useful advice.

    big huggs, remember you are not on your own. xxx

  • I'm very sorry you had such a bad experience with the psychiatrist and GP. I was very lucky and perhaps this is rare. My psychiatrist always listened and always felt there was a physical cause for the way I was feeling rather than it being a psychiatric reason. This was also many years ago and perhaps things have changed for the worse.

    Perhaps your advice is better; to NOT see a psychiatrist. It shouldn't be like this. We should be getting help from our doctors, not ridicule :(

    Carolyn x

  • well said hun, dont get me wrong, I was depressed many years ago and seen a psychiatrist, he was lovely and I had CBT rather than meds, because no cause was found last year on blood test and examination, Doc ask me would I go, I went to prove I am not depressed and prove my doc wrong, it backfired on me. I was sithering with anger and I couldnt let it go, so I decided to write in great detail about how his conclusive evidence was so very wrong and not to judge me on my past history. I would get help if I thought I was depressed, dnt get me wrong, I get low and anxious but my moods shift again.

    Its has scarred me, but I am confident to challenge there analasis and evidence, as there arnt any, just my past medical history. 16 years ago. pleased you had a good one, but I feel as with all of us, our list of smptoms have no diagnoses, therefore it must be psycological in roots. As I am a honest person, he was really nice, but feel my half hr interview was not enough to warrant a dignoses of Depression, unless im in denial lol.

    My pain is very real, infact I was going to slap my hand on his desk and shout ouch and say I didnt feel that its all in my mind lol lol wish had of done now.

    Any way that was my experience and my list grew of a magnitude of smptoms.

    Thanks Carolyn, we shouldnt be ridiculed, if we say we are not depressed then they should except that and stop looking and analising us.

    did you know that there a 5 tick boxes for a psycosomatic disorder?

    ibs, gastro probs( acid or indigestion) anxiety, exhaustion ow and palpatations, I fit them all with a TSH undetectable.

    bigg huggs xxx

  • Looks like you have got to research psychiatry before you interview this new psychiatrist of yours. Good luck. Maybe psyc for dummies..

  • Ow sorry went of on a tanjent there, if you feel you need some help then please go, dnt suffer.

    xxx

  • You're not mad - it's in your neck not your head!

    I too was given the 'you're depressed' story & antidepressants fix everything - not! (actually I had 'anxiety symptoms' caused by a dodgy nodule).

    I knew I wasn't depressed and didn't go back for years either, fearing a wrong diagnosis would make things worse, even 'tho my 'mental nurse' friend suggested a visit to a Psych would prove it wasn't in my head - my gut feeling was it would just be on 'my record' for ever - just my experience.

    Maybe I was mad - refusing treatment - but the wrong treatment!

    Sadly I've heard this time after time, so not just me and when they did eventually find the nodule, at the pre-op the nurse had a heart-wrenching story how she wasn't believed either and her son died, all because she was an over-protective mother with 'Münchhausens'

    Trust yourself, took me a while to convince the GP it was a physical thing. hugs Jane xx

  • Hi, I know exactly how you feel, I feel exactly the same and I have all of your symptons, I was diagnosed in 2006 and I haven't seen any light. I am fed up of going back to the doctors to be told to go and do exercise and to take some antidepressants and do things for me! And look at me like I have nothing better to do than make up symptons and go and see them.

    Feel like my body my house my family is not mine anymore it's been taken away.

    Xx

  • Hi there -am sure i read somewhere that people with Hashi do better on T3......so being on levothyroxine no matter what the dose isn't going to cut the mustard. I would ask for a combination of treatments -perhaps adding T3 in or going onto a NDT or as a last resort T3 on its own. Can you afford to see someone privately? It would be worth it if you can afford to do so.....if so Thyroid Uk have a list of the 'good' docs as do TPA. Please don't swallow their nonsense about needing to see a psychiatrist -you are quite right you need appropriate thyroid medication. Oh and do make sure that you have optimised all your vits and minerals as listed on Thyroid Uk - it can really help with your uptake and absorption of thyroid hormones. For me this was b12 and a high B vit complex made a big difference.

    As for those so called doctors - they need their heads examining!!!!

    hugs

    xxx

  • Hi Julie

    Sorry to hear you're feeling worse. I was the same after seven months on T4 but luckily found a good doctor who changed my diet ( no dairy, gluten, sugar, prcessed, additives, preservatives etc) and checked iron, (low) D3 (low), changed the brand of thyroxine too. Most hypothyroids have gut issues - leaky gut eg - where we don't absorb nutrients and T4. Lots of allergies. It's not enough to just take the tablet as you'll read on here so many other factors need looking at. You may also have adrenal fatigue like I have and I was overexercising and making things worse - it's all a fine balance. i'm much improved, no panic attacks, depression, palpitations, dry skin, aversion to bright light, aching joints, swollen tongue, fatigue, hair loss the list goes on.For over two years now I have stuck to my new diet - only having treats on special occasions - hard at times but worth it.

    It's worth looking at Dr Lams site and others.

    Good luck and don't get down about psychiatrist visit and as someone on here said you can tick that off once done and arm yourself with as much information and knowledge as possible so they can see you are not mad :-) because if you are we all are on here too ;-)

    xx

  • Hi Julie,

    I am so sorry you are having such a tough time right now.

    I would suggest it might be wirth while seeing he pyschiatrist as you have nothing to lose and every thing to gain.

    i have underactive thyroid and severe depression. But i just wanted to sat 2 things really, firstly i have only seen 2 pyschiatrists and they have both been utterly lovely - they LISTENED, and were consummate experts in not "telling" me what I should. It is utterly different to seeing a GP believe me.

    mu second point is that when I first saw pysch for severe depression he saw that my thyroid results were not normal and was actually going to just treat me with thyroxine to see if that was the cause of my depression/anxiety. Apparently (you can google it) there is a massive connection with hypothyroidism and depression etc), pyschiatrists are much more proactive in treating subclinical hypothyroidism than GPs.

    So I would say give it go, there`s nothing to lose - I used to to take my best friend to appts - it was great as my concentration was poor and she could remember more accurately what pysch had said. I actually left my first appt with pysch with a prescription for thyroxine other meds came later but that doesnt mean that you will need anything else tho..

    take good care, hang in there - things will improve, :)

  • oops me gain , sorry meant to say i left pysch appt with T3 presc NOT levo - it was a while ago! pysch`s are more into T3 - pity they couldnt spread the word with their GP colleagues. :)

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