Mental health in T1 diabetes

[MaggieSylvie]

My partner has been in hospital for many weeks now, and discharge has nearly happened twice but each time he has been kept back. He was admitted with high blood sugar, aggressive behaviour and confusion. I would say that for the past ten years, he has not been the charming man I first met back in the eighties. We have both aged. He has a benign pancreatic cyst which seems to be playing havoc with his blood sugars. I'm not talking about hypos at dawn or hypers with or without ketones. I'm not even talking about low blood sugar causing snappiness. I am talking about rages and outbursts, sometimes leading him to behave in desperate ways.

He can now be triggered so easily, and the hospital staff have tested him for dementia (he's 82). He can get very confused and aggressive, but apparently, it isn't because of dementia. They don't know what the problem is. The young doctor in charge of the ward discussed him with me and wondered about a personality disorder - can that happen late in life? Schizophrenia was even mentioned. When he's at home, I'm walking on eggshells and he's become very demanding.

When I visit him he is not welcoming, and last time, because I didn't manage to get him out of the hospital, he told me he didn't want to see me again. That was over a week ago and so I haven't visited. I'm sure they are going to discharge him soon because he is not going to get better while he's cooped up in a ward.

While he has been in hospital, I have been dealing with a court defence involving both of us and it is ongoing. I am afraid if he comes home soon, I won't be left alone to get on with things and he won't understand what I'm doing. I'm on my own, so I will have all the shopping and everything else to contend with, although he will be having official carers, but they only care for him, and I have my own problems which my partner doesn't see because he's blind and doesn't want to know what other people are doing.

Is there anyone out there who can recognise what is going on? It's a miserable state of affairs.

[DippyDame]

My first thought is always to have a full thyroid test.

The brain needs a lot of T3

btf-thyroid.org/psychologic...

Sorry things are so challenging

[MaggieSylvie in reply to DippyDame]

I have asked if they considered thyroid, as he sometimes feels very cold when it is warm. They just look at me blankly. When I ring up to ask how he is, I will make more of a point of it. Thankyou for having the same thought.

[DippyDame in reply to MaggieSylvie]

Push for a thyroid test ....must include FT4 and FT3...not just TSH which is not a reliable test

Results must be approaching 75% through the ref range.....not just scraping in near the bottom

You are legally entitled to request copies of any results, from the surgery...ask at surgery reception

I can only imagine how upsetting this must be

Thyroid disease is abysmally understood by many medics

For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply, so....

2 thoughts..

Is his thyroid managing to produce enough T3?

Is his system adequately converting T4 to T3

And.. the following is actually relevant!

I remember, long time ago,reading a wonderful old book called The Citadel by AJ Cronin,

The main character correctly diagnoses and successfully treats hypo-thyroidism (‘myxoedema madness’) in a man who suddenly became violent and who is on the brink of being committed to an asylum by the other doctors.

The book has influenced people to study medicine including one of TUK's former advisors, Dr Toft.

rcpe.ac.uk/journal/aj-croni...

Keep fighting for your poor husband he's probably trying to protect you by saying he doesn't want to see you!

He might agree to a private finger prick test at home, like this one below, run by the NHS so medics can't argue against it's worth.....as they do with some private tests!

monitormyhealth.org.uk/thyr...

Just a few thoughts...

Good luck

[MaggieSylvie in reply to DippyDame]

Thanks DippyDame. I have made a note of the 75% aspect. I remember the name A J Cronin and I don't think I have time to read the book, but I know from my own experience how clueless doctors are and with a very low TSH I'm not being medicated, which is probably fine. When I've got through all these nightmares, I will make a start on my own health; in the meantime, talk to the hospital, where, as my partner is physically fit to come home, they are considering other options for him. The hospital bed has been waiting for two weeks to allow him to have downstairs living but they are doing tests. I hope they have already done the thyroid test but doubt they will have included T3. It's a tick-box situation, I feel.

[Blondiejayjay]

researchgate.net/profile/Sa...

[Marz]

Could you ask at the hospital to see copies of all bloodtests that have been carried out ? CORRECT Thyroid testing to include T3 and B12 - Folate - Ferritin - VitD ??

So often the above can be low in range as we age and cause the unpleasant symptoms you describe...

[MaggieSylvie in reply to Marz]

Oooh thank you for that, Marz.

[Marz in reply to MaggieSylvie]

youtu.be/s5wDIoqN2X0?si=GPw...(Not working as expected?)

Prof Smith talking about low B12/B6 and brain shrinkage research ...

[Britpol]

I am so sorry to learn about your problems. Could you ask the hospital to scan his brain . I remember my mother’s uncharacteristic aggressive behaviour, prior to being diagnosed with a brain tumour. I am sorry to be bringing up this unpleasant possibility, but it is best to know what you are dealing with. I would also ask for further dementia tests. I also recommend reaching out to family and friends for support. All the best

[MaggieSylvie in reply to Britpol]

Thank you for your support, Britpol. He has had at least one brain scan, so I think a tumour has been ruled out. I don't know what further dementia tests there can be. I'm assuming they won't give up after a simple memory test.

[bookish]

I would echo Marz. Whilst of course this could be thyroid, to me (from my own family history) it also shouts B12. In view of your partner's age (increased risk of poor B12 absorption) and the stress of ill-health generally (depletion of B12 and other vitamins) I'd ask for serum B12 and serum folate but also anti-intrinsic factor antibodies and if at all possible homocysteine and methylmalonic acid. Is he taking anything like metformin, methotrexate, a PPI? Any other increased risk such as meat-avoidance or stomach surgery or Crohn's, coeliac etc. Unfortunately B12 metabolism is not yet completely understood and testing is far from perfect - there are tests that may rule in a deficiency but none which can rule one out. The level in the blood does not necessarily equate to what is in the cells, which is the bit that matters. If B12 is said to be ok and folate is low, please don't let him be given high dose folic acid without better testing. Best wishes

[MaggieSylvie in reply to bookish]

Thank you for the extra information. I will make a note but while he is in hospital I don't have much say.

[nooneimportant]

Firstly, I am so sorry for your situation it sounds like you have a lot to deal with and I'm sure someone on this forum is likely to be able to point you in the right direction as they're all supportive.

I have a client whose son has a blood sugar disorder - it's not diabetes, NCAT deficiency or something - when he has an NCAT episode it can result in brain damage so they have to monitor his glucose almost like diabetes ... my husband has type 1 diabetes and severe hypos and hypers can also result in brain damage .... strokes (numerous family members) also have had slight brain damage ... as I'm sure you are aware any brain damage can result sometimes in aggressive behaviour changes. Might be worth looking into.

I have Graves disease hyperthyroidism which sends everything raging, including for me my personality - I've never been in such a state of perpetual anger as what I was in the height of Graves ... it was exhausting feeling like that too. Like others I would suggest a full thyroid test, blood count and vitamin test.

I do so hope you can get to the bottom of the situation and get the treatment that you both need x

[MaggieSylvie]

B++++y hormones! We are living too long, and yet it seems such a short time. Yes - I am aware that every time me partner gets a spike in is blood sugar or has a urine infection, it is damaging his brain. This is the first I've first heard of NCAT but my partner has had Type 1 for about 45 years.

I wasn't expecting to get so many helpful replies to my post. I have tried previously to get help from Diabetes UK and have given up on them.

I can relate to you with your Graves in a way; I had an early menopause - I had just carried a baby for 22 1/2 weeks and had no idea I could be menopausal. I was raging - went into mental hospital for a little while - came home - went back to work - triggered by anything and everything, and lost the job I had worked so hard for. Still no-one had any idea what was wrong with me - I was just "unpleasant, mad".

There's no treatment for me, other than some peace and quiet when my partner gets discharged instead of walking on eggshells. Thank you for your understanding.😊