has anyone had madness when hypothyroid?

[MEguy]

I went a bit mad 12 years ago thinking people were after me and ran away from home. I had a diagnosis of ME/CFS in 1992 and it got better 16 years later which is just when the madness started. I was diagnosed with bipolar disorder (at 44 years of age). Since then, I have had 3 episodes where I thought people were after me and other mad ideas. I am ok now though since being on an antipsychotic (aripiprazole 20mg). Has anyone else had mad thoughts and found out it was hypothyroidism causing it?

[humanbean]

I've never been psychotic (as far as I know) but before my hypothyroidism was treated it made me severely depressed and anxious. I was a bit paranoid too.

I've found that all of the things that are common problems in thyroid disease, if levels are not right, can affect my mood severely. So, all the following have helped me :

Getting my free T4 and Free T3 high enough in range for me.

Optimising my iron and ferritin (iron stores).

Reducing my cortisol, which was way over the range at the time I first started treating my thyroid.

...

I was on T3 only for several years (I also tried NDT) but that didn't do me many favours other than keeping me alive. I couldn't tolerate T4 until my iron and ferritin were massively improved, but once I could take T4 and T3 together my mental health improved and many other symptoms reduced in severity. I'm still very short of mental and physical energy though - I have other health problems besides thyroid disease.

[HandS]

Hi : i have not personally experienced this but my daughter currently is - she was sectioned in September, sent home after 8 days. Is very manic and delusional, believes she is being watched. She has BPD - but she has never been like this before.

I rang her GP yesterday and begged her to do blood tests to at least eliminate thyroid issues as the psych hospital did nothing . GP sent an ambulance to her home, but she refused to go to hospital.

I am trying to get more help but it’s a battle.

Very best of luck , hope you stay well

[Ruby1 in reply to HandS]

Just wanted to wish you luck. It is so very difficult when our children are having health issues. Sending you strength and positive thoughts.

[HandS in reply to Ruby1]

Thank you, I appreciate your kind thoughts. X. It’s v hard

[humanbean in reply to HandS]

Getting some blood tests for nutrients would be a good idea.

Although not directly relevant, symptoms in schizophrenia have been found to diminish in people whose nutrients are improved, and I would expect they will help with other psychiatric problems or are at least worth trying.

webmd.com/schizophrenia/fea...

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

[HandS in reply to humanbean]

Thank you, the last test result I have seen showed several anomalies, and lacked key testing as well. The challenge is get another test down while she refuses to leave her flat, and get someone to request the correct tests in the first place. I had bern trying to get a home visit by her GP - but she wanted her tl go to hospital instead and called an ambulance

I knew she would refuse to go……the paramedics tried to persuade her for about 90 minutes and said they could see we were “going round in circles”.

I keep trying….

Thank you for your message

[Alanna012 in reply to HandS]

My thoughts are also with you Hands. It must be incredibly difficult and there isn't any support for relatives in your position. It is extremely anxiety provoking and your hands are often tied. All you you can do is keep asking for help, but if it is refused you are left to try and handle it

A close family relative of mine has BPD and last month and we had a similar scenario of the ambulance being sent and two specialist paramedics talking to him for over an hour. This was the second time the ambulance had come. Like your daughter he has gone missing and run away several times in the past.

We've been pulling our hairs out. Over the years nothing we have said to the doctors has resulted in any meaningful intervention. I went into the GP with him myself was very clear about his need for help, and they still wouldn't even refer him to the hospital mental health services. Treatment has been very poor.

This time however, he is now being put under the specialist community mental health team which includes, psychologists, doctors, nurses and therapists. But this was after a total breakdown. It's unbelievable we had to get to that point. It struck me that there isn't a nutritionist as part of this multi-disciplinary team, and despite a family history of autoimmune illness including hypothyroidism he has never been tested for hypothyroidism or had key vitamins especially the B's tested. There just isn't any knowledge of vitamins and minerals and their importance in mental health.

I speak, but of course he objects to me giving suggestions for his health. I'm convinced some people need a lot more B12 than official recommendations. Vitamin D is a vitamin we know a lot about, especially since the pandemic, but even now borderline (aka totally insufficient) levels are said to be no big deal. I have been told as much when mine were dire. My mother with severe osteoarthritis only gets D3 20,000 a week. No magnesium or any other cofactors.

Unfortunately I don't see acknowledgement of these things getting better. But we just have to keep trying.

[HandS in reply to Alanna012]

Thank you for your kind reply - and we both seem to be experiencing the same total absence of MH provision for BPD patients, as well as no communication between medical and mental health services.

Often patients are arrested for behaviour caused by no clinical support and are thereby criminalised for having an untreated severe and enduring illness. I have written to my MP and government.

Very best wishes for your relative’s progress x

[Bearo in reply to HandS]

You could be talking about my niece. Arrested several times for causing scenes in public, spends a few days on the psychiatric ward while they force her back onto her meds, then discharged with no support.

[HandS in reply to Bearo]

Sorry, I have only just seen your post. Yes much the same here . My daughter’s neighbours have actually been very kind but are sick to death of the police and MH services.

It’s too long a story - but 8 AND 9 of October she was taken hospital A&E by ambulance and kept in overnight for a Mental Health Assessment next day. Both times was said to have Full Mental Capacity -‘and on 10 October was told to make her own way home - 12 miles away through town and country - with no money, no phone, and flimsy footwear. By the time I was told, she was missing for hours -and the police refused to help look for her as she had ‘full mental capacity’.

At 8pm - after 7 hours of wandering, she was picked up in response to a 999 call about a ‘very distressed woman walking on a busy A road with no shoes on’..

Like I say - just too much to type but complaint lodged with all Agencies, MP, and Govt deparments. On Thursday she got a named CPN - that night she was visited by the Crisis Team and assessed under the Mental Health Act and detained under Section 2 on grounds of not having capacity - the actual doctors’ assessment was delayed for a few hours to locate a bed - but she was visited an checked on in between.

I know it beggars belief. I am not letting this go ……..

I am so sorry about your niece. My daughter was also arrested, TWO DAYS after being dumped at her flat after the 999!call. She was held in a custody suite for hours because the police did not think she was fit to interview - but by midnight were told she had ‘fully capacity’ , was questioned and released without charge ar 2am - dumped back at her flat.

It’s a living hell for her, and a constant battle on her behalf for me and my son.

But this is now war / and we have only just started

[MEguy in reply to Alanna012]

Hi Alanna

Are you suggesting your relative's BPD is due to an underactive thyroid? WHat symptoms has he had to get a diagnosis of BPD?

[Alanna012 in reply to MEguy]

His symptoms are myriad and include extreme anxiety verging on paranoia, fear of leaving the house, unfortunately episodes of violence (not toward people but things i.e. breaking furniture and things, deep depressive episodes which include malaise, inability to get out of bed, no desire to wash or be clean, alternating sense of self loathing, suicidal ideation, with break-through moments that can last quite a while of seeming confidence and stability, profound periods of sadness, obsession over relationships, extreme fear of abandonment (sometimes) manipulation of people, sudden impulsive behaviours, gambling, disappearing in car for days and not answering phone, driving unsafely, changing jobs or quitting work suddenly. This sounds extreme, but it is over years and doesn't all occur at once, it's more like a pattern of behaviour that reveals itself in response to things some of which are triggers. We've come to know many of the triggers, but he cannot acknowledge them himself so far.

None of this was understandable until a private therapist gave a diagnosis of BPD at which point it all made sense. We had been begging for a formal NHS assessment for years prior to this. After this breakdown he was finally properly assessed by NHS and confirmed.

The biggest factor of BPD is feeling emotions extremely deeply and more profoundly which drives the behaviour. Painful emotions are extremely difficult for people with BPD to process. It becomes understandable (and that is a great thing) when you realise this. Unfortunately there is a lot of stigma due to people not understanding this basic point. People have more sympathy for individuals who cannot read emotions well. But seem to find it harder to sympathise with people who can feel them but cannot process them.

Do I think thyroid disorders can cause it, yes but perhaps not always directly. Perhaps it makes an underlying genetic disposition more likely to express itself. I think in someone who is dependent on levothyroxine or liothyronine to have that withdrawn can cause mental illness and paranoia most definitely. I nearly quit my job the other day and spent days in and out of tears, anxious, disagreeable, and hating life after pausing my levothyroxine. Even knowing what was happening and why, I couldn't prevent myself from slipping into the void. Under-treatment and no treatment, can result in severe mental illness. And for me, T3 alone interestingly does not necessarily restore mental equilibrium, I need T4. But T4 in isolation also causes me to become depressed! Would a standard GP (or even a psychiatrist) understand this? No. The more time goes on, the more convinced I become that it's not as simple as hormones in, hormones out. Nor do I believe T4 is just a storage hormone doing nothing unless used. My personal experience tells me differently.

For some people who already have an underlying genetic disposition to mental illness, low thyroid levels or lets say low hormone levels are dangerous. In a university psychology degree the mechanism of thyroid disorders are taught and covered quite in-depth it is KNOWN that low hormone levels affect behavioural expression and affect levels of neurotransmitters in the brain (likely the gut too). I don't think this crucial information translates well to clinical practice for some odd reason. In my opinion they should ALWAYS give people with any form of mental illness a full thyroid panel. That includes post-partum depressive mothers.

There's a belief that celiac disease, ulcerative colitis, eczema, asthma, autism, lupus, ADHD, arthritis and several other diseases are in fact autoimmune diseases that are all branches of the same tree that manifest in families in different ways across the generations. So in mine, interestingly, we have ulcerative colitis, thyroid disease, asthma, eczema, allergies, chronic urticaria, now several young nieces and nephews have ADHD, if this theory has some truthful basis I do not see why BPD would not be included. I do think in time, that mainstream medicine will acknowledge that these illnesses are connected. Perhaps there's more chances of polymorphisms affecting T3 utilisation in these families. Or maybe cortisol. I'm speculating here.

If you have a mental health condition it is important to make doctor aware that a pause in your thyroid hormones can cause a decline. They often do stupid and bloody cruel things to thyroid patients, like stopping their prescriptions out of the blue, with no warning. Happens to me often.

[Noelnoel in reply to HandS]

If budget allows please consider buying a private test. She won’t have to leave home as it’s just a finger prick sample of blood that you then post back. Results are then online within a few days

[HandS in reply to Noelnoel]

Thank you for your reply. At the moment the Crisis team are searching for a bed so she can be admitted to hospital - it’s a long, sad story…. She is very, very ill and I have been limited in what is possible - but will continue to advocate for her x

[Noelnoel in reply to HandS]

I know how it can be, I had to advocate for my father for three years. Not with mental health but physical health. It was a daily battle that I fought like a warrior and the constant state of alert and hyper-vigilance exhausted me

You’re going to need to arm yourself with information and if you possibly can I urge you to get those initial simple private tests. Sounds a ridiculous idea but I can almost guarantee they won’t be looking at her nutrients because they don’t seem to understand how crucial they are to physical AND mental health

Before this forum I had thought my nutrient levels were good and so I ignored the advice here. Doing so lengthened my wellness journey

I wish you all the very best in getting the care your daughter deserves

[HandS in reply to Noelnoel]

Thank you so much / and I agree with everything you say. I am engaging all agencies relentlessly.

Sadly, at the moment, she is extremely aggressive and hostile towards me because she is in acute mental conflict and emotional pain / and the safest target to express that, is me. The crisis team have been out during the night and we are waiting for a bed - she isn’t safe.

Thank you so much for your supportive message.

[SlowDragon Administrator in reply to HandS]

Would she agree to a nurse coming to the house to do blood test ?

Or doing DIY finger prick test

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH both offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[HandS in reply to SlowDragon]

I thought I had replied to you - but seems not!

Thank you for your message. We are at this moment waiting for a bed so she can be admitted on a MHA section; she is extremely ill and volatile. However I shall continue to advocate for her .

Many thanks for your concern

[Ukie]

May be no help at all, but just in case. Are you on statins? Someone close to me had symptoms of paranoia, and when they stopped taking simvastatin they gradually got better. No return of those symptoms in 5 years since.

[MEguy in reply to Ukie]

nope

[helvella Administrator]

I suggest you have a read of this page of my blog and the linked paper.

Dr Richard Asher - Myxoedematous madness

helvella.blogspot.com/p/dr-...

[SlowDragon Administrator]

Myxodema Madness is recognised issue when hypo

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

psychiatrist.com/jcp/schizo...

Also thyroid patients can be misdiagnosed as bipolar, ADHD etc

some links re Mental issues including Bi-polar and Hashimoto's

drknews.com/when-hashimotos...

holtorfmed.com/mental-illne...

thyroidpharmacist.com/artic...

hypothyroidmom.com/miss-dia...

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

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

healthunlocked.com/thyroidu...

[Lottyplum in reply to SlowDragon]

Over 50 yes ago when I worked in a large mental health hospital, I came a cross a paper re a female psychiatrist (of course) who found treating some of her female patients with monthly B6 injections was hugely beneficial to relieve aggressive+in some, violent behaviour due to hormonal fluctuations+imbalance. 50 yes ago+yet still so little understanding regarding these issues in the medical profession at large.

[Alanna012 in reply to Lottyplum]

At this point I don't think it's due to misunderstanding, it's that we have this model in healthcare which is about money and profit, not altruism, which we tend to think is the primary objective.

There's no money in giving vitamins to patients. The NHS over the years has gradually dropped or discouraged the ability to get prescriptions for things like Vitamin E and A creams, Evening primrose oil (which I received as a teen from GP for premenstrual cramps) vitamin D - now only to be given for people suffering osteoarthritis, iron tablets - buy your own - etc etc.

We are hell-bent on this pursuing this model. Holistic healthcare may happen in countries elsewhere in Europe (I hear France is more holistic) or Asia, but not here.

[ShatteredofLee in reply to SlowDragon]

Sorry you might not know this but I’d be grateful if you could point me in the right direction. the first 2014 article link on the postsuggests that patients with psychosis have routinely a blood test to check their thyroid levels, is that still the case? Also would that actually include T3 rather than just TSH and t4?

[MEguy]

thanks for all your replies everyone. I will certainly keep an eye on my thyroid results in future. All my life so far though, they have always been in the mid range or even top of the range if I remember correctly. I wonder if it is worthwhile doing a full thyroid and B12 test while feeling well. Don't forget I am on 20mg of an antipsychotic.

[Alanna012 in reply to MEguy]

Worth doing an Active B12 test, rather than the standard one and then making sure you are higher in the range, rather than mid-range.

[MEguy in reply to Alanna012]

my last B12 I had 3 years ago when I had a relapse of ME/CFS was around 300-350 out of a possible 750. The GP just said "it's considered normal" and so I took 1000mcg sublingual B12 and anecdotally the symptoms went away.

[Alanna012 in reply to MEguy]

Yes the standard response to vitamins being anywhere within the range is 'that's considered normal' you could waste your time asking 'Whom considers it normal?' And 'how did they ascertain this was normal?', and 'But is it normal for me?' but you'll only get an irritated response.

A standard B12 test, only tests how much B12 you have overall in your blood and this the standard test you receive from the doctor.

An Active B12 test tells you how much B12 is being actively taken up and used by the body and you have to get this privately.

This is the test you should get to ascertain an accurate picture of how much you may need to further supplement B12. But you seem well informed anyway, but can you imagine if you got that response from doctor and you weren't.

[bookish in reply to Alanna012]

Please don't think I'm being picky but active B12 only tells you how much B12 is available for use, not whether the body is using it or can use it. The test can identify people who are deficient but were not picked up by a straight serum test, but it is not enough to be certain of not being deficient - no test can do that. Homocysteine, MMA, IF ab, GPC ab, serum gastrin, plus FBC may all give useful information to help identify a deficiency. Unfortunately B12 in the blood does not mean B12 in the cells, nor serum folate (B9), B6, etc. One carbon metabolism is complicated and as you so rightly say, anywhere 'in range' means we are just fine.....or not.....Best wishes

[Alanna012 in reply to bookish]

I appreciate the 'pickiness' and thank you for the correction. Never apologise for correcting information on the forum x

[Hidden in reply to MEguy]

Not an unusual scenario.

[bookish in reply to MEguy]

I would definitely also get your B12 checked although serum alone cannot rule out a deficiency. Used to be called megaloblastic madness, so worth ruling out as a cause/contributory factor. It was my great grandmother's main symptom but we all get a bit paranoid with B12D in my family, along with other neuro etc. Best wishes

[Lilian15]

When my sister was finally diagnosed with hypothyroidism the doctor gave her levothyroxine and told her to increase it until she feels better. He omitted to tell her to leave six weeks before increasing. So she took some the first day, next day she felt the same so increased the dose, and carried on increasing the dose, not feeling much better yet but she was becoming very paranoid. She told me she thought her husband was trying to poison her etc. Finally it was discovered she was well overdosed. She had to stop taking the levothyroxine and they gave her some drug or other until she was back to normal. She then went on to taking the thyroxine properly.

[HealthStarDust]

If you have a thyroid disease, is it colloquially called Thyroid Madness.

[E_lizab8]

Just a thought, many hypothyroid sufferers have problems with gluten, are celiac or have sensitivity, gluten can affect the brain and if not remedied can cause Bipolar D.

[1tuppence]

Years ago I worked in a secure acute mental health hospital. One of the patients was a young man, very slim and with large staring eyes. I asked the medics if he'd had his thyroid hormones checked. He hadn't. He was found to be hyperthyroid, and his treatment began. He was discharged from the hospital.

[Beau55]

sorry to hear about your suffering MEguy. Although I haven’t suffered with any type of psychosis, I have had two mental breakdowns requiring medical intervention. It’s earth shattering and terrible. I know mine have been caused by my thyroid, low cortisol and the stress of it all. Have you ever read Barry peatfields book? He has a few case studies about the mental aberrations of thyroid and its different manifestations. I think it’s safe to say this very well could be the cause of your illness ☺️

[Swissgirl]

 MEguy  HandS I am very sorry to hear about your own /your daughter's issues. This is devasting. Unfortunately, I can relate on a very personal level through my own health issues (Hashis, Mast Cell Activation Syndrome, ME/CFS, Fibromyalgia which all cause a myriad of psychological /cognitive and physical issues) but on a more severe level with our then 20-year old daughter who has been/was battling severe depression, with intrusive and suicidal thoughts, diagnosed with ADHD, burn-out... and had to be admitted to the emergency psychiatric clinic in autumn 2021. Disclosure - I am not a medical professional, I just want to learn to help my family and me I did a ton of research on what tests should/could be done and also had wonderful support on this forum - thyroid, nutritional - particularly as she has been vegan for about 3 years (B12, B6, folate, ferritin, Vitamin D, amino acids) parasites, coelic test, cortisol, food intolerances... Here is the post with all the really helpful replies: healthunlocked.com/thyroidu.... She has been suffering from digestive issues and is now following a GF diet and really has noticed

side effects (physical and psychological) the 2-3x she's forgotten (coeliac test came back negative when she was still eating gluten, so we suspect NCGS, which I also have and so does my sister. There is also EDS and PCOS on my sister's side )! I also did quite a lot of reading on other supplements that could help and one really interesting one I researched was lithium orotate for psychiatric symptoms, as well as low dose naltrexone LDN). Integrative/functional (and maybe also allopathic doctors) practitioners postulate that psychiatric symptoms are/can be caused by inflammation and research is increasingly finding evidence on the gut-brain connection (hence e.g. Autoimmune/antiinflamatory diets, GF/DF diets, etc. ). I really recommend reading Dr. James Greenblatts book ' The Cinderella Story of Nutritional Lithium' and also checking out his websites. As well as reading about LDN and psychiatric symptoms.

I wish you and your families all the best.

PS. Sorry about spelling mistakes. I am in Switzerland and English spell-check does not seem to be working on the forum.