Has anyone on this site been diagnosed with a P... - Thyroid UK

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Has anyone on this site been diagnosed with a Physciatric disorder before being diagnosed with Graves.

Scarfred profile image
31 Replies

Thyroid systems can mimic Physciatric conditions.

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Scarfred
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31 Replies
PinkNinja profile image
PinkNinja

I wasn't diagnosed with Graves, but I was diagnosed with a psychiatric disorder (and was then given T3 as part of the treatment, which worked miraculously!) before being diagnosed with hypothyroidism.

Jackie profile image
Jackie

Hi , Many years ago, I could not get thyroid treatment ( GP )My cardiac problems were inadequately treated by a rubbish cardio. I had a lot of falls, known to be associated with these conditions ( but not then!) instead of being referred to a cardio again and an endo ( as in my notes from years ago),useless GP referred me to a neuro who did no relevant tests and I ended up in a psyche hospital for 6 months.then even in those days the thyroid was always tested by psyches. When discharged I sorted out my own treatment and psyche wrote to everyone that he was wrong,he had assumed I had had the correct tests. I had it removed from my NHS records, what a fight.!Before it was removed it caused me terrible problems, even now the GP , who I do not see, phones hospitals when in as an emergency and says that i am mad. It has seriously endangered my life on many occasions but the hospital I normally have to go to ( unless ambulance men decide otherwise!) is a brilliant hospital which correctly understands these conditions. It is one of the reasons I say that the T4 and Free T3 test along with TSH are essential with thyroid disease. I hope that this is some help to you.

Best wishes,

Jackie

Scarfred profile image
Scarfred

Hi Jackie thanks for your reply.I am new to this site I feel I may have found someone who can show me empathy.My nightmare began in 2008 January. I was so ill I went to my local A&E. After hours there I ended up being sectioned under the MHA section 2 for 28 days. I was taken to the local Mental hospital to a secure wing. What a place, fortunately I had private medical insurance and was transferred the next day(I know think this was a huge mistake). My nightmare continued after seeing the Physchatrist for 10 mins was diagnosed with bipolar. I was 48 years of age with no previous history except an elder brother with severe mental issues(I have since found out they were quick to section me because of him, it is known as a family cluster). I contacted my solicitor to make a mental health tribunal which I lost (now found out that only a staggering 5% win) I did not want to take the drugs I was told if I did not comply I would be put Under a section 3 six months. A now win situation. About a week later after medical tests at the clinic was diagnosed by a Endo with Graves. The Endo told me one of the worst cases he had seen, and I should be on a medical ward. Did not know what this disease was, had to be better than bipolar. I thought they would send me home. Oh no! How did you get the NHS to change your records. I have since proved I never had bipolar a misdiagnose. I am now really ill, I suspect autoimmune hypo. I will have bloods done this week. I cannot climb the stairs,can't sleep tremors, no body hair, no eyebrows. Head hair falling out at an alarming rate. I have ended up all alone, I have no life just a sorry existence.thanks Annie

Jackie profile image
Jackie in reply to Scarfred

Hi first of all ,if you reply click on "reply to this" as otherwise only know you have e mailed by trawling!I often miss it.I was in a private hospital but still horrible when OK! I was very lucky as by pure chance under a well known ,actually famous psychiatrist. he gives legal evidence as expert witness ) all over the world. how ever to answer your question a night mare. However you have to persevere as those wrong records and GP were lethal when I was very ill in a coma. A lot more besides. This paticular psyche great enough to say he was wrong. he had to write lots of letters to every one to say I never had any psychiatric disease and in fact was not tested correctly before being referred to him.. GP In the mean time as very ill caused so many problems, vile. in the end after I changed to another GP in the practice, unfortunately because so ill I have to stay with that practice!!She was frightened of the senior partner who keeps getting rid of docs as so vile! Eventually, after threats etc. ( not me at all) with the letters , I finally had the NHS records corrected. The other doc ( so called ) I will not allow to have anything to do with me. Not easy with hospital etc as she they are all part time. 2 hospitals still have this rubbish ( from the rotten GP ) but best i could do there was have letters from pysche put in file. The hospital I have to go, a large teaching hospital, who have more sense and really only interested in what the patient says is wrong etc. I have many docs there and they all know the truth, for my own protection The only thing I can say is to get as many consultants ( eg endo) as possible to write to GP, keep copies of letter and always take them into hospital with you.If you are firm enough and plenty of written evidence you should win. It took me 12 years!No good changing GP`s as that would make it harder because only then going by records. keep all history ( medical ) on PC and a print out with you at all times ,incase of hospital admittence.I am in hospital every month or so ,only with emergencies, horrible places! I hope this is clear as long story and I am dyslexic, so ask if not!

Good luck with it.

Jackie

in reply to Jackie

Hi Jackie , could I have the name of the psychiatrist , who owned up to the misdiagnosis.

in reply to Scarfred

Sorry to hear your story , are you better now ?

greenginger profile image
greenginger

Hi I have Graves and probably have been having episodes of being hyper for several years.

I was working as a Police Officer back in 2005 and kept having panic attacks at work and fast heart rate. I thought I was going to have a heart attack. This passed and all blood tests showed being border line for hypo ( my mum and sister have Hashis). I saw occy health who advised I lose weight and that I was stressed.

I later left my job as I found the paperwork and physical confrontations suddenly very hard to deal with. I had done 11 years and felt bullied at work about other matters. I was diagnosed in May 2011 as hyper and have been on carbimazole since. I thought prior to treatment that I was cracking up. I was angry and exhausted and even now I cannot stand to be around people for long. Simple things annoy me and I am no longer outgoing nor do I enjoy driving or doing hobbies anymore.

So yes I think that untreated Graves can cause psychotic episodes and I am glad my husband helped me get though the worst time or I may have ended up in the room next to you. Good luck with getting treatment and with getting your notes edited.

Scarfred profile image
Scarfred in reply to greenginger

Hi thanks for your reply. Do you mind if I ask you a few questions. How old were you when diagnosed with Graves and what treatment are you receiving? Do you have any other illnesses associated with Graves? Final question what was your medical history before this started. Thanks on anticipation.

greenginger profile image
greenginger in reply to Scarfred

I was 41 when finally diagnosed. Health generally good before except for ovarian cysts removed when I was 29.

Now I am on carbimazole but due to be weaned off in next few months. I have problems with my joints and have awful periods. I have sore gritty eyes but not TED as yet. Still tired all the time as have 3 young kids. I have had carpal tunnel, migraines plus all the other problems such as low iron, B12 and hot sweats, swollen feet. etc etc.

I have hashmotos since age 6 and I was diagnosed with every mental illness going! Phobias of everything, panic disorder, eating disorder, generalised anxiety, ocd, depression. Was given a lot of anti depressants/anti anxiety drugs but they did nothing.

These all started within weeks of my thyroid stopping working, and all went away once I started NDT 14 years later. :)

merissa profile image
merissa in reply to

me too. well done, glad you are well, im still in the process x

Just to add I was also very paranoid/easily irritated and angered and so ridiculously over sensitive that it's unreal... those haven't really gone :( I still cry at everything!

Scarfred profile image
Scarfred in reply to

Thanks for reply. I am so sorry it has taken 14 years to get better and receive NDT. Have only just found out about it. I suspect I was hypo since childhood. Then when hyper in 2008 when diagnosed with Graves. I now believe I am autoimune hypo all the symptoms. I have bloods on Thursday

I have found and new Endo see him 27th. I am frightened to see GP re fear of being prescribed antidepressants due to past history. This disease has ruined my life. Let you know how I get on.

Scarfred profile image
Scarfred in reply to

Hi forgot to ask do you mind telling me how and why you were diagnosed at 6. Many thanks

Jackie profile image
Jackie in reply to

Hi that sounds under treated for your thyroid and possibly low vit D ( a hormone) or even B12An endo always tests for these things + other tests. ,common with autoimmune thyroid disease.

Best wishes,

jackie

PinkNinja profile image
PinkNinja

I found this paper about a patient who was admitted to a psychiatric hospital with psychotic symptoms that appear to have been caused by the onset of Grave's disease.

ncbi.nlm.nih.gov/pmc/articl...

and another case report here

jmedicalcasereports.com/con...

There appear to be many more such case reports.

I hope you manage to get the psychiatric diagnosis (or should I say "misdiagnosis"?) removed from your records without too much fuss from the establishment.

Carolyn x

Scarfred profile image
Scarfred in reply to PinkNinja

Thanks Carolyn, I wish a could find a British case of this. I have tried solicitors as soon as you mention MHA Section they don' t want to know. This misdiagnoses resulted in the end of my marriage. Do you mind me asking how old were you when you had your incident? What heart problem did you have, I had reallbad Artierial Fibliraton which resulted in me having heart stopped and restarted. Thanks

PinkNinja profile image
PinkNinja in reply to Scarfred

When I was at university I started suffering with severe depression. I also started gaining weight after always being skinny and struggling to gain weight. On top of that I developed epilepsy which they believe is possibly due to damage sustained as a child. At the same time I was fainting a lot and it was noticed that I had an arrhythmia and bradycardia but they couldn't work out what was causing it, even after a week on the coronary care unit. After some months I started exhibiting psychotic symptoms and a couple of years later was sectioned.

After a forward-thinking psychiatrist prescribed me T3 as a last-ditch attempt to successfully treat me, I made a miraculous recovery. I no longer needed any psychiatric meds, I lost all the weight I gained, I was able to successfully manage a full-time job as a network engineer and run 10k races.

After several months of feeling human again, it was decided I no longer needed the T3 and it was stopped. All my psychiatric symptoms returned and I was hospitalised again and prescribed ECT (Electro-convulsive therapy). I was tested for thyroid regularly due to my psychiatric meds (lithium among them) but was told my thyroid was fine (it was actually borderline!)

A couple of years later, I was diagnosed hypothyroid and prescribed T3 again. I had just changed to a different GP and he was excellent. I was able to work again and felt great. Later it was decided that all patients must be prescribed levothyroxine, not T3 and I went downhill again. I gradually regained some of my health, but the biggest improvements have been since sorting out my adrenals (still not totally there with that) and switching to NDT. I still have a little way to go, and wonder if T3 might be the answer again, but I am doing so much better. I am now off psychiatric meds again :)

I don't know if this helps you at all, except to show that thyroid disease of any kind can cause all manor of havoc to your body and mind, but I was happy to tell you anyway.

I haven't had my diagnosis removed as I am having difficulty convincing them it is my thyroid that is the problem (My mental health issues started before an official diagnosis of hypothyroidism). It isn't causing me any problems though. Even occupational health at work are quite happy with me and can see that it isn't an issue. My psychiatrist currently doesn't feel I have the mental health diagnosis I was originally given and may eventually agree to have it removed, but the GP will take a little convincing, I feel.

Carolyn x

Jackie profile image
Jackie in reply to PinkNinja

Hi Carolyn, I have left details on the question as to how I had my records sorted. it is really important for serious hospital admissions.It effects your treatment ,in a terrible way!

Best wishes,

Jackie

PinkNinja profile image
PinkNinja in reply to Jackie

Thank you Jackie :) I hope to get it sorted out very soon! I really appreciate your help and experience.

Carolyn x

Jackie profile image
Jackie in reply to PinkNinja

Carolyn, Goo morning! Let me know how you get on.My endo thought "They" were mad, not me!

Best wishes,

jackie

merissa profile image
merissa in reply to PinkNinja

Carolyn your post sadens me greatly, what a road to go, what you have been through, is bording on abuse. Its teribble and fears me greatly as you no with my post, I keep getting labelled health anxiety but blood tests are showing possible graves.

I do not wish to see any consultant, or any g.p Id rather suffer, they have scarred me or preferably scared me to death.

its terible indeed, when I come back from my scan on Tues, I will be seeing Dr S.

thank god, my CBT private therapist keeps me stable.

I have recently been told that I can see the nhs endo, dont think so as he felt Dr P a load of crap and to top it all felt there might never find a cause for my smptoms.

big hugs and thank you so much for sharing with us the treatment you have suffered. xxx glad you are getting there.

PinkNinja profile image
PinkNinja in reply to merissa

Keep fighting and find all the information you can in order to win. It can be a long road, but I knew nothing about thyroid disease back then, and I was very young. Arm yourself with all the knowledge you can and maybe you can avoid going through too much more of this. Trust your judgement and Dr S. I'm sure he will put you on the road to recovery.

Wishing you all the very best.

Carolyn x

Jackie profile image
Jackie in reply to Scarfred

Just read about solicitors , will not work for this as far as I can tell, son a lawyer. I had all the evidence but still....Make sure you see arrythma ( cardio ) expert for AF, it was about the 6 th cadio I saw, so different If saw him earlier I might not have had 4 cardiac arrests.,etc.

Jackie

in reply to Scarfred

Ive been misdiagnosed , contact me if you want the story.

Scarfred profile image
Scarfred

Hi Carolyn Many thanks for you honest and canid story. I feel so angry about this misdiagnosis it finished my marriage,my children think I'm nuts, not vey nice. From the links you have given me I have discorved Encephalophy masquerading as acute psychosis hashimo and corticosteroid- responsive encephalophathy associated with autoimmune thyroiditis may be of some interest. I think as I am alone with no support it is hard to get an answer. I want to proof to my wonderful children that I am not mad. Thanks for all your help and understanding. Take care. Annie xx

PinkNinja profile image
PinkNinja in reply to Scarfred

All the best with it Annie. I hope you get there and I'm sure you will. You sound very determined and determination is half the battle. We will be here to support you however we can. Please let us know how you get on.

Carolyn x

RedApple profile image
RedAppleAdministrator

There is a website called 'Thyromind' that was set up in 2000 to help raise awareness of the link between thyroid disorders and mental illness.

Unfortunately, the site is currently experiencing a problem (may be the subject of a trojan attack or something). However, as it's a static site, the information does not change, so it can be viewed safely through the 'way back machine'.

Here's the link:

web.archive.org/web/2012050...

riverdove profile image
riverdove

I have a toxic nodule which was undiagnosed for a long time. Was constantly told by drs and nurses that I was having a panic attack when I was actually in thyrotoxicosis. Wasnt picked up til hospital did a blood test when I was admitted with AF. Until then hey seemed to think it was all in my mind and ignored my symptoms.

Scarfred profile image
Scarfred in reply to riverdove

Hi Thanks for your answer. What treatment did yo have for AF? I read your early question I have those same symptoms the pain in my neck across the shoulders and chronic lower back pain and tremors sweats and a racing heart.My whole body aches. My sleep is awful too.

riverdove profile image
riverdove

Hi

Hopefully I am on the road to recovery. They finally got my med dosage right and had RAI for the nodule 10 days ago.. If you are on Carbimazole it will give you pain in the joints. (arthralgia). I am happy to have it to get well again. Am just starting to be able to talk again and can get around a little bit with a walking frame. Still need the wheelchair to go out.My muscles have wasted away. Was superfit six months ago.

I have been getting AF for twelve years. Probably from when the nodule became active so have tried a lot of things. Was much worse with the thyrotoxicosis. My big standby has been Magnesium. The hospital here increased my dosage to six tabs a day of Mg aspartame. Also found when in emergency the only thing that worked was a Mg drip. The beta blockers and channel blockers make me worse so have had to do it on my own. I dont drink anything with caffeine in it not even decaf, and I do love a cup of coffee. You mustn't drink any alcohol. The AF from alcohol is known as Holiday Heart Syndrome it is so common. Dont go long periods without food and only have small meals and just eat a little bit of food constantly. Keep really well hydrated. Try not to get stressed. When I got diagnosed with AF suddenly a lot of upsetting things didnt seem that important any more when it involved my heart. I also use l-arginine and l-taurine. Read the work by George Eby. Also take l-carnitine for thyroid. Read the work by Benvanger. I also cannot overexercise or get heat stressed. (I live in tropical Australia). I also take Vit E and Co enzyme Q10 to keep my strong.If my heart hadnt been so strong I dont think I would have survived this.

If you go online there are sites that list AF triggers. Its worth checking them out. My biggest help has been research and more research. Read, read, read. There is a huge amount of good info out there. Just keep cross checking it and try and find medical sites.

The tachycardia has been an awful problem for me as well preventing me from doing anything. It is slowly going. Hallelujah. It is so horrible. You sound like your medication isnt right. Until mine was increased the tachy was bad and the tremors were so strong people thought i had Parkinsons. Carbimazole was increased from 10 to 30mg per day and slowly improved.

I also take a lot of other supplements and am vegetarian to reduce the risk of stroke. You need to find what works for you. Apart from the Mg I've found the medical profession doesnt seem to have much idea about anything alternative. Also found acupuncture helped with the chest pain and tightness. Hope some of this helps. I think just the fact that someone else cares enough to write is a wonderful boost.

Cheers Sue

ps The chest pain was not heart attack as checked for that everytime with ED admissions with AF.

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