Elderly Hypothyroid With Dementia in Hospital, ... - Thyroid UK

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Elderly Hypothyroid With Dementia in Hospital, Doctors Don't Know What is Wrong! Ideas would be Appreciated

Dramlouie profile image
71 Replies

My 95 year old Mum has now been in hospital for 4 days with an infection and UTI, green stuff in the nether regions and thrush. Despite me giving the doctor her endocrinologists letter regarding her taking T3 with levothyroxine and telling him we have to buy it, I was told yesterday that Mum hasn't been given any T3. I did notice for a few days that her voice had deepened and she is very confused. I gave the doctor her T3 yesterday afternoon. She has only been taking levothyroxine and was still waiting to see the hospital endocrinologist. Mum also has dementia and when she went into hospital she knew who her family were and was chatting. Today she is shaking, didn't know her son, is very confused. She was talking when she went into hospital and now she is slurring her speech. She is on antibiotics and they don't know what is wrong. Other than dementia and thyroid Mum was very well although her legs were weak and wobbly after being left in bed by carers for weeks saying it was dangerous to try and get her out of bed. She was walking a mile with her walker 2 months ago. I have asked for B vitamins to be tested as I found out antibiotics deplete them and they are linked to the brain function. Any ideas would be appreciated. She is still waiting to see a gyneacologist re the green stuff.

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71 Replies
SeasideSusie profile image
SeasideSusieRemembering

I would be worried that the hospital endocrinologist won't agree to her taking T3 despite the letter - I hope you have another copy of that.

Are you visiting your mother every day? Considering her apparent decline which sounds as though it could be connected to the lack of T3, I would seriously consider giving her the T3 yourself when you visit. Just my opinion and what I would want in these circumstances.

Dramlouie profile image
Dramlouie in reply to SeasideSusie

I am visiting tomorrow morning so I shall take another copy of the letter and insist that it is given. I sometimes forget one of my 4 daily doses of NDT and I quickly notice it, my voice goes croaky and I can't think straight. Mum has been off t3 for days.

SeasideSusie profile image
SeasideSusieRemembering in reply to Dramlouie

The trouble with hospital staff giving meds is that they have their routine and you have your meds when they give them to you. She may be given them with her food, other medication, etc, and that's not ideal.

Dramlouie profile image
Dramlouie in reply to SeasideSusie

I will check tomorrow. She is now on her third ward and third doctor. I printed out all the information when she went in, it is probably lost by now so I shall see the doctor tomorrow.

MissGrace profile image
MissGrace

I wouldn’t expect them to give it - I’d give it her myself. They may get round to it after having lengthy discussion and referring up the hierarchy - but she’ll be very ill by the time they get round to it.

This makes me so upset and angry. They are destabilising an elderly, confused, ill lady. We know that this denial of medication would make any of us ill if it’s what we are taking every day, so goodness knows what it will do to your mum.

Is it on her notes at the GP’s that she takes T3? I remember discussing this very issue with my (private) endo and what would happen if I took T3 (I don’t at the moment) and went into hospital. He said he would write to my GP and get it put on my notes and then they would have to give it to me.

I too hope you have another copy of that letter. Complain, contact PALs, feed her T3 yourself, threaten to record the conversation with them over T3 and contact the media, be prepared to fight. Slightly different, but when my elderly dad was in hospital once he was put on a terrible ward with dementia sufferers wandering around, interfering with each other, falling over, falling out of bed etc and the nursing staff had no grip. I told them that I had videoed what was happening on my phone and would be contacting the media if they didn’t move my dad out of there. They moved him - within 10 minutes!) 🤸🏿‍♀️🥛

vocalEK profile image
vocalEK in reply to MissGrace

You rock, MissGrace!

MissGrace profile image
MissGrace in reply to vocalEK

Lol! The sad thing is all the other elderly confused people left on that ward because they had no one to insist on better care for them. It was like Night of the Living Dead in there. Maybe I should have passed that footage over to Panorama... 🤸🏿‍♀️🥛

klr31 profile image
klr31 in reply to MissGrace

I wish I'd followed this suggestion when my dad was moved to the Elderly/Frail ward after a good week on the Respiratory Ward as the difference was huge and dad went downhill quickly. He died just under two weeks later and suffered despite me asking for the anticipatory medicines to be used. It haunts me still.

Karen

SlowDragon profile image
SlowDragonAdministrator

Clearly she needs someone, probably a relative to ensure she gets her daily T3

Is this a single dose, or split doses through the day?

Do you have a health power of attorney set up for your Mum

gov.uk/lasting-power-attorn...

Dramlouie profile image
Dramlouie in reply to SlowDragon

It is split into two doses, I share it with my brother on an agreement for health and wellness but he doesn't believe in T3, only what drugs the doctor prescribes, no supplements which I have to buy for Mum out of my money. But because they aren't prescribed, even the T3 which is not on the mars sheet or in the blister packs the carers aren't allowed to give it but I have fought hard for me to put it in a dosset box and they then give it to Mum but only the T3. No supplements are allowed even though recommended by the NHS endocrinologist for thyroid support.

Quokka profile image
Quokka

I'm really sorry about your mother. I think a UTI can cause temporary dementia and make existing dementia worse, till the antibiotics have an effect?

Muffy profile image
Muffy

Yes, a UTI can cause incoherence and should improve as the antibiotics do their job. My 96 year old, normally totally ‘with it’ aunt was the same last week. A UTI was diagnosed and treated and is fine now after antibiotics.

waveylines profile image
waveylines

Am so sorry to hear what has happened to your Mum. What a worry.... Am afraid hospitals are notoriously bad with meds. Ive had the misfortune of several ops in recent years in different hospitals & they are all the same!!. You have to keep a beady eye on meds am afraid. I keep my thyroid meds away from them because they either mis-dose or give at the wrong time -that is with food so I tell them I will take them myself. I would if you can give the thyroid meds yourself. They will have a set routine -the first round of meds is usually given with or just before breakfast. Anything out of their range such as ndt or T3 they will not understand am afraid.

The slurred speech would concern me. Have they checked her for a stroke? My mum had dementia and am afraid the big downturn for her was when she had TIAs /mini strokes. They can do a blood test to check for this.

Thinking about you at this difficult time. Xx

Batty1 profile image
Batty1 in reply to waveylines

You have to provide your medication when going into the hospital for surgery?

waveylines profile image
waveylines in reply to Batty1

Yes Ive always instructed to bring my meds in with me. Have you not been told this?

Batty1 profile image
Batty1 in reply to waveylines

I'm in the US and I just bring my medication list and they provide but never on my schedule...so I have to complain constantly I need my meds...I like everything I take to be on time.

I feel for your mom my 78yr old mom had crazy time sleeping because muscle cramps and memory blips so bad she would hallucinate I finally insisted to her Dr. That he give her a vitamin panel with Magnesium .....she was deficient in magnesium and calcium after couple of weeks she said "I have never felt this good" pretty stupid that doctors dont test for vitamins and minerals deficienciesin the elderly.

Dramlouie profile image
Dramlouie in reply to waveylines

The carer did put the meds into her bag but because the T3 is in a dosset box and it doesn't have a pharmacy label on it they didn't. I took it in on Friday but it is sitting there in her cupboard.

waveylines profile image
waveylines in reply to Dramlouie

Am so sad to hear of your Mums plight. You will have to give her the thyroid meds by the sound of it. Not having them will male it much harder for her body to fight infection.

annnsandell profile image
annnsandell

This is a very poorly lady, whilst the T3 problem will certainly not be helping the situation her other problems are very worrying. A UTI causes temporary dementia, not just a little confusion but it can be severe. I would be worrying about this green stuff, what is up with them if they haven't discovered what is causing it in 4 days and where the infection is and treating with the right antibiotic, it sounds more like the UTI is a side effect of what is happening internally. She obviously isn't improving on the current antibiotic. Try talking to the nurses, they often know more what is going on than the doctors. Time to cause a stink about the whole position and the care home where she has been. Is she getting enough fluid, again dehydration can cause confusion. I can't advise on symptoms of insufficient T3 but you will know ow she was before it was prescribed.

No doubt we all have stories of poor diagnosis and treatment in hospital and banging your head against a wall with a doctor that appears once a day 4 days a week, especially as your Mother will not be able to say what is going on.

I hope it soon goes better.

AnneEvo profile image
AnneEvo

When my sister was in hospital she had a UTI and was very confused (she phoned the fire brigade to get her out as they were trying to kill her!) The staff said it was due to her age but her daughter and grandaughter insisted it wasn't, that she wasn't normally confused. She hadn't had any of her usual meds (not hypo though) even though she'd fairly recently been in the same hospital so they should have been on her records. Her granddaughter contacted PALS, another doctor got involved and the staff attitude and treatment quickly changed, thankfully.

Buzcat profile image
Buzcat in reply to AnneEvo

Every thing is down to age they won’t listen to you I had the same problem I was fit only meds’ I was on was Levothyroxine they changed my brand and I thought I had been poisoned went to doctor with a lot of bad symptoms but of course it was my age went private and my antibodies are over 3000 that is very high think they are listening to me now it’s time doctors look at how fit you are and not put it down to age.

AnneEvo profile image
AnneEvo in reply to Buzcat

Yes. If it isn't cigarettes or alcohol, it's your age!

Angel_of_the_North profile image
Angel_of_the_North in reply to AnneEvo

And elderly patients are a nuisance and take a lot of care so they doesn't really care too much if they die. My mother was actually denied water and food as she didn't die fast enough in a hospice.

AnneEvo profile image
AnneEvo in reply to Angel_of_the_North

😥

Dramlouie profile image
Dramlouie in reply to Angel_of_the_North

Terrible. Her doctor a month ago stopped her antibiotics and put her on end of life which stopped her occupational therapist and physio treatment. Its an abomination and sadly we are all headed for the same treatment and demise. Sorry to hear about your Mum, she was probably holding up the queue :( xx

Angel_of_the_North profile image
Angel_of_the_North in reply to Dramlouie

Take her home, if you can. She won't be any worse off and you won't have to suffer hearing her crying out for a drink and being ignored.

Karen321 profile image
Karen321

Contact PALS first thing tomorrow and complain , in fact I would call the duty hospital manager today and complain also make sure you give her the medication yourself. UTI does cause dementia like symptoms especially in the elderly but I am concerned about the green discharge you have described x

Gingersnap202 profile image
Gingersnap202

To me, the UTI could actually suggest a need for a stronger dose of T3! ... Several years back, when my new GP decided I was taking too much Armour (4 grains at the time) and cut it in half. I had repeated UTI's for a year! .. I finally gave up trying to convince that GP that I needed my dose that my Old Doc had me on and found a new Doc. He gave me back my four grains of Armour and I soon felt normal again. ... That was 10+ years ago and I haven't had a UTI since! ... Get your Mom her T3 any way you can. Otherwise, I would be afraid the UTI won't resolve and she will slip away from lack of proper thyroid treatment.

Marz profile image
Marz in reply to Gingersnap202

T3 needs to be at a good level so ALL the cells of the body can receive an adequate dose - and that includes the cells that line the bladder and for the healing of those cells ...

Buzcat profile image
Buzcat

Check with the pharmacy that they have not changed her brand of Levothyroxine after I got changed from Mercury pharma to Teva I am still having Side effects a year on I Am 75 yrs old my daughter was the same

Boba profile image
Boba in reply to Buzcat

I had bad side effects from Teva too. Could not breathe properly, could not swallow food , anxiety ...Pharmacist asked me immediately return Levothyroxine from Teva and go back to GP , who said she never ever heard of any side effects from thyroid meds and also that was message from endo that she spoke too regarding my complaint.

I only tolerate Wockhardt and Actavis ( 75mg dose)

But, I came to major breakthrough about Hashimoto and also found out that there are numerous patients who healed and are off the meds.

My symptoms improved much with a little work ( detox) , but now planning to do more as recommended how to heal.

I will write about it here soon with a hope that it will help someone .

Regards 😊

Breena profile image
Breena

Please make sure that she is going to toilet properly this can make her very agitated motions must be monitored.

Sylvia22 profile image
Sylvia22

Also if your mom has water

Infection it

Affects the mind. They need to make a priority of sorting this.

Dramlouie profile image
Dramlouie

I have just visited Mum who was fast asleep and I couldn't rouse her. She was on a sodium chloride drip. I spoke to the nurse who said that despite me taking in the T3 it has not been given to Mum. She is due to see the endocrinologist tomorrow Monday, it seems it is always tomorrow, tomorrow! I took in more copies of her endocrinologists letter but no doctor is on duty today. I managed to slip a T3 under Mum's tongue. I am so angry about this, despite letters, talking to doctors, nurses she still isn't having her T3. Nurse said she is chatty early evening but sleeps the rest of the day. The carers at home give her porridge for breakfast and my brother makes sure she has a full box of turkish delight beside her. I keep telling them eggs for choline and no sugar! What on earth can I say to make people listen, she is my Mum for goodness sake!

Hypothyro profile image
Hypothyro in reply to Dramlouie

Hi, you should still be able to rouse ur Mum when asleep, so this is now serious! Press the alarm bell if you have to but get a Dr. there NOW. Good luck 👍

Dramlouie profile image
Dramlouie in reply to Hypothyro

I am home now, the nurse knew I couldn't wake her....

Hypothyro profile image
Hypothyro

Hi sorry to hear this. I can’t comment on the hypo part of this as I’m still learning, but I have dealt with UTI’s for a long time & that’s probably what’s causing all ur Mums symptoms. Confusion, absolute confusion to the point of not even recognising anyone & that coupled with dementia not good. I agree with others that you should give Mum her Hypo meds as that’s going to add to the problems. Check that she is on a broad spectrum antibiotic, & that the UTI is actually gone (doesn’t sound like it is at mo) also she may need IV fluids, gently pinch the back of her hand to check skin bounces back, u’ll see if she is dehydrated etc Dehydration is a major cause of confusion. Also really important ask if her blood pressure is ok, her blood sugar level is ok, her oxygen sats & her Temperature. Write these down, if you can & repost here & I’ll advise if these are ok.

My Dad was left in bed by carers too, which caused him problems & along with his dementia & uti, caused him a breakdown. Hopefully you can catch this & ur Mum be better soon.

Very best of luck to you 👍

Oops nearly forgot to say, slurred speech, needs FAST Test Asap 👍

Dramlouie profile image
Dramlouie in reply to Hypothyro

Is that fasting sugar test? She has the shakes as well. She feels cold to the touch. Mum as never drunk much and her skin stays up like a skyscraper!

Dramlouie profile image
Dramlouie

I read online that Amoxycillin depletes the B vitamins including B12. I requested a vitamin and mineral test. I shall visit every morning with T3 in case it hasn't been given. She is now on a side ward so easier to give it to her. I have read that D-Mannose and cranberry tablets keep UTI's away, why can't carers give this to the elderly, it doesn't make sense when antibiotics deplete vitamins.

Hypothyro profile image
Hypothyro

Normal blood sugar, throughout the day (not fasting) but especially if not eating or diabetic

Dramlouie profile image
Dramlouie in reply to Hypothyro

Mum's only eating a small amount and hasn't been eating for weeks properly due to the swollen tongue and sore mouth. The carers give her the same food day after day. I tell them what to give Mum but it falls on deaf ears. The fridge is full of good food but its the same old packet porridge, beans on toast, quiche.

vocalEK profile image
vocalEK in reply to Dramlouie

This may sound mean but... maybe you should go to your Mum's house and remove all the crap they have been feeding her instead of what she is supposed to eat. No beans. No porridge. No problem.

Make sure there is plenty of what she should be eating. Maybe quiche would be ok, since it is mostly eggs?

Had the same problem with my 90 year old Mum. She like myself was hypothyroid and went into hospital for ‘tests’. She was perfectly fine for a few days but I mentioned to the night staff to keep an eye on her as she had dementia. The following day she was in a terrible state, confused, slurring and totally out of it. It would appear that they had given her night sedation to which she reacted badly. All very upsetting and unnecessary.

Worth asking if they are sedating your mother.

Dramlouie profile image
Dramlouie in reply to Tropicalgardener18

I shall ask, thank you

vocalEK profile image
vocalEK in reply to Tropicalgardener18

Or worse yet, giving her antipsychotics.

vocalEK profile image
vocalEK

A warning: If a person's dementia is caused by Lewy Body Disease (a form of Parkinson's) rather than Alzheimer's, make sure the hospital never doses him or her with an antipsychotic. It will make things much worse. LBD and Alzheimers have very similar symptoms, but a LBD patient often has hallucinations -- especially of an animal.

verywellhealth.com/differen...

"IMPORTANT NOTE: Traditional, or typical, antipsychotics, such as haloperidol, fluphenazine or thioridazine should be avoided. About 60% of LBD patients experience increased Parkinson symptoms, sedation, or neuroleptic malignant syndrome (NMS). NMS is a life-threatening condition characterized by fever, generalized rigidity and muscle breakdown following exposure to traditional antipsychotics." lbda.org/go/treatment

vocalEK profile image
vocalEK

Keep us updated on how your Mom is doing. Thanks.

Camomile1 profile image
Camomile1

Hi Dramlouie. Have you got Power of Attorney or Deputyship for Personal Welfare for your Mum? If you haven't been given Power of Attorney you may find it difficult to convince the medics to give her T3. If you have Health & Welfare Deputyship, you should insist that as there is a letter from her endocrinologist about her requirement for T3, then T3 should be administered to her. We've just got Health & Welfare Deputyship for our severely learning disabled son. It's not always easy to convince them to prescribe him medication, but as his Deputy they have to consult with us regarding his treatment. Good Luck and hope the gynaecologist sorts out your mum. She may be better off seeing a Uro-Gynaecologist rather than a straight gynaecologist?

chrisbuy63 profile image
chrisbuy63

I am so sorry to hear of your mums plight but I am glad she has you fighting her corner. I agree that UTI's can cause confusion and seemingly worsen the dementia but it is good you are getting B12 checked too because that vitamin is often low with hypothyroid or autoimmune conditions and in the elderly low levels could lead to dementia like symptoms etc. I hope you will see improvements in her condition soon. She is blessed to have such a caring daughter.

tgirlnc profile image
tgirlnc

Hello- I’m so sorry to hear your mum is going through this. (Sorry I haven’t read through the other comments-but I’ve been through a bad UTI scare with my mum and she had cognitive issues too) First and foremost what antibiotic is she on? My mum ended up in critical care because of a misdiagnosed UTI and they put her on Cipro. She ended up with antibiotic poisoning that caused severe cognitive symptoms (she was only 67). Your mum may have a UTI, she may also have a fungal infection..regardless they need to test for both thoroughly as a fungal can slightly elevate bacteria in urine and depending on what test they do and ranges they are using to measure- it can be wrong. In which case an antibiotic will be more detrimental than good..All that said, I implore you to make sure she is not on any of the fluoroquinolone family of antibiotics. It is known to have horrific side-effects..(that should cause it to be pulled off the market, but unfortunately doctors still use it and over use it). I was just looking for some articles related to it’s horrible effects, but can’t find..will keep looking and post later. Also if she was put on any of the fluoroquinolones, then supplement her on magnesium and ubiquinol (both good for thyroid as well)..as well as a high-grade probiotic...and get her off of it and on to another antibiotic if needed. Also- my mom had a full recovery after 7 scary days in critical care (she didn’t know who anyone was while she was in there and her body was detoxing the antibiotic)...but the head doctor of Critical care validated my assumptions and agreed it was antibiotic poisoning and treated her accordingly to a full recovery. I was grateful someone listened. Sending positive thoughts for your mum. 💛🙏🏻

Eddie83 profile image
Eddie83

There is little doubt that hypothyroidism is related to dementia, even though establishment docs fall all over themselves, to deny it. You should administer her T3 - also, being euthyroid will improve immune function. And you should give her supplements, docs are clueless about that.

ncbi.nlm.nih.gov/pubmed/299...

Dramlouie profile image
Dramlouie

I have been buying supplements for her but about two months ago it became very difficult to get her to take any, I had to whittle it down to the most important then she wouldn't take any when her UTI took hold. It is difficult when the carers aren't even allowed to give her vitamin C which the chemist suggested to keep her immune system strong and help with the UTI. No cranberry tablets are allowed, nothing and the doctor won't even give her complan to help with nutrition. She just went downhill. A year ago I kept getting spaced out episodes, not quite there, doctor had no idea. I did research on healthunlocked and found it to be low zinc, after just one tablet no more episodes. It can be something so simple that the doctors aren't bothered with. It is so frustrating. I wish I could get a naturopath to visit her.

Dramlouie profile image
Dramlouie

My thoughts today......

Mum has primary hyperparathyroidism and her normal endocrinologist wanted the doctor to keep an eye on her calcium levels, her last visit was end March 2019. In March 2019 her calcium level had risen to 2.41 ( (2.05-2.4) and her parathyroid hormone to 8.45 (1.6-6.9). T4 17.2 (12-22), T3 7.5 ( 3.1- 6.8), TSH under 0.01. The hospital doctor said Mum had high calcium levels.

Low zinc level causes high calcium levels.

Serum calcium levels physiologically controls secretion of parathyroid hormone (Hyperparathyroidism).

High parathyroid hormone linked to low zinc levels (hypozincemia) and to magnesium levels.

Symptoms low appetite, low immune function, eye and skin lesions, lethargy, weight loss, CKD. My daughter noticed a cut across her eye yesterday!

Food intake has been minimal with not much variety.

Porridge containing phytates is given every morning which lowers zinc absorption.

Taken from Alzheimers.org.uk

Zinc is essential for the healthy functioning of the body, including within the brain. Many older people do not have high enough levels of zinc in their bodies, and this is worse in people with Alzheimer's disease. The especially low levels in Alzheimer's may make the disease worse and lead to even poorer memory, although the reasons behind this remain unclear.

It is thought that zinc plays a key role within the brain of reducing inflammation; when we talk about inflammation in this context, we mean chemical changes related to the immune system being activated, rather than swelling. Inflammation in the brain is often seen in people with Alzheimer's disease, and is being investigated both as a cause and effect of the disease.

These researchers, and others, have found that low levels of zinc can make inflammation in the brain worse, and so directly impact on the progression of the disease.

tgirlnc profile image
tgirlnc in reply to Dramlouie

Have you checked to see which antibiotic she is on? Sorry to message again, I know you are stressed, but I cannot emphasise enough how high levels of antibiotics (the one I mentioned has a black-box warning in the US and is especially bad, but others) can cause cognitive issues in women over 55 and the potential for cognitive issues gets exponentially higher with age.

alchemilla12 profile image
alchemilla12 in reply to tgirlnc

sorry I see that I'm reiterating what others have already mentioned -didnt read down through all the comments before I replied!

Dramlouie profile image
Dramlouie in reply to tgirlnc

Amoxycillin and Nutrofurantoin x

alchemilla12 profile image
alchemilla12

it may also be the infection that's not cleared with the antibiotics -elderly people can suffer dreadfully with confusion and weakness with UTIs

Dramlouie profile image
Dramlouie

So I gave Mum a T3 25mcg early aft yesterday. I visited today to find Mum sitting up, a big smile on her face and she was so glad to see me, her eyes lit up, she looked sooo much better. She was still a bit confused. They have given her Cinacalcet to reduce her calcium levels. The hospital endocrinologist has refused to give her T3 despite her daily tablets of 25mcg mor and 12.5mcg aft. So I gave her another T3 early aft today. So it could be the Cinacalcet or the T3 working. Such a big difference in her. I can't tell them and my brother is so niaive about T3 and won't believe me. He would get angry if I told him I had given it to her, doctors know everything in his eyes. I will keep up to date. I hope this helps others.

vocalEK profile image
vocalEK in reply to Dramlouie

Good for you. Sad that sometimes we need to protect ourselves or our loved ones from well-meaning know-it-all medical professionals.

Eddie83 profile image
Eddie83 in reply to Dramlouie

Great news! You are learning that establishment/institutional medicine is run by exceedingly stubborn, stupid people.

MissGrace profile image
MissGrace

That is great news. We are all thinking about you and your dear mum (we only get one, they are so precious.)

The endo’s refusal to give her T3 disgusts me. I admire your restraint, I think I would have floored him. Doctors may know everything in his eyes - but what about the endo whose letter you have, don’t they know too? We are trapped in the lottery of these differing medical opinions on T3 constantly and endos who are willing to gamble with our health. And those most vulnerable have no chance of fighting the ignorance.

If she is a little better, get her out of the hospital and home as fast as you can. Keep fighting for her. My thoughts are with you and your mum. I miss my mum every day; we love our mums. x 🤸🏿‍♀️🥛

Dramlouie profile image
Dramlouie in reply to MissGrace

Too true. I owe it to my Mum to fight for her. She taught me lots about supplements, gave me books and she has always been for alternative medicine. Now she is in the clutches of the big pharma brigade and just because she doesn't have a say now I know what my Mum would want and I mean to see that she gets it. We have to fight because next time it could be us! xx

Dramlouie profile image
Dramlouie

Mum's usual endocrinologist was recommended on this site as being T3 and NDT friendly and we both went to him privately first and then switched to NHS but we have to travel out of the county to an nhs hospital to see him. The endocrinologist now in charge of Mum has kept my friend on levothyroxine for years and if she does anything she has to sleep for the rest of the day. I have told her to see mine but she believes her endo. Her life is being ruined. I am visiting shortly and will be asking for her T3 to be returned to me, it is always trashed.

Dramlouie profile image
Dramlouie

Mum has high B12 levels which is strange and is linked to liver disease. So I researched online and found that antibiotics killing off the gut flora affects the production of choline in the liver. Antibiotics also affect the absorption of choline. All linked to cognition.

waveylines profile image
waveylines

So glad you decided to intervene and give your mum her thyroid meds yourself. Glad she is looking much better since you did so. 🤗🤗

Its an important message for all of us who arent on standard thyroid treatment -we need to make sure that someone in our family knows so they can give it to us if the hospital wont and we are too ill to do it ourselves. To be fair my hospitals would but it want first thing an hour before food which is the way I take it.

Dramlouie profile image
Dramlouie

I gave Mum her T3 again today mid morning, she is sitting up, chatting, joking, happy but still confused. The doctor said her liver kidneys and heart are all good and strong, it is her dementia now. The best thing is that her mood is soo much better, she is very happy and her eyes are bright now. I take my NDT 4 times a day, I wonder what would happen to me, is there a care directive that can be made at least regarding thyroid. I wish I could post a photo of the big difference in Mum. Thanks for all your help and support and urging me to give the T3 myself, I wouldn't have had the guts to do it otherwise.

Dramlouie profile image
Dramlouie

Yesterday 23 Aug 2019 Friday found Mum to be ratty and unhappy. I found out that Mum hadn't been given breakfast as she was asleep. She would be asleep as she was flat on her back! This was at noon. Today I found Mum chatty, alert, happy, responsive, enquiring about the family, her memory has drastically improved, speech is normal and couldn't tell that she had dementia. I have been giving Mum 25mcg T3 every morning with first dose last Sunday. The change is gradual but dramatic. Her levothyroxine has been decreased. I am so pleased, I have my darling Mum back. It shows that doctors pronouncing end of life can be wrong and not to give up on our loved ones. If we had not insisted on Mum going to hospital Mum wouldn't be with us now. She is even better than before and is looking forward to going on trips again. First one is an ice cream by the seaside. We have moved her bed downstairs into the lounge now, it was a hard decision to make and being sentimental it hit me hard but I have my Mum and that is the most important thing. It shows how important the thyroid is for brain health and mood. Thank you for all your support and suggestions, it was much appreciated and kept me going x

Eddie83 profile image
Eddie83 in reply to Dramlouie

A significant portion of doctors have an avoidance thing with people who are elderly, and/or have disabilities. This got drilled into my head during the 29 years I was the parent of a child with severe CP.

Dramlouie profile image
Dramlouie

So I visit Mum today and found her slumped in her chair and shaking. Her bed was in the process of being made and I said that Mum needed to get back into bed. You will have to wait 10 minutes for the bed to dry was the reply. Mum said she felt dizzy so I got a doctor who did obs and bp and pulse ok. They were faffing around and then I asked if Mum had any breakfast. It turns out she had a few cornflakes and a cup of tea early in the morning. It was now 12.30 and I said that it was probably low blood sugar as she usually has two eggs, bacon and porridge for breakfast. OMG they have been starving her. They got Mum into bed and Mum was in a deep sleep. They were trying to feed her and I said that she needed a while to recover and then try and feed her. They really didn't have a clue and I said she has low thyroid and needs to keep up her blood sugar. I am hoping they are more aware now but I shouldn't be telling them what is wrong, it isn't very reassuring.

Dramlouie profile image
Dramlouie

Mum was good 3 days ago, bright and joking and happy. 2 days ago I found her shaking and bent over in the chair, saying she was dizzy. yesterday she was obviously not feeling good, curled up in bed and not very responsive. Today, just curled up and mostly asleep and when woken by a nurse very ratty. At home she has snacks throughout the day and in hospital she isn't eating or drinking much. Today they missed her on the tea run and I had to get them to return. I thought it could be low sugar but they tested her and it was ok. I am really worried why she has gone downhill, she really looks depressed. She managed 'I love you too' today but that was it. I keep wracking my brain, why is she so up and down. When they hydrate her with a drip she is so much better and then goes downhill again. I hate seeing my Mum like this, it is breaking my heart. She said she is very sleepy. Zinc was low in blood test a week ago.

Dramlouie profile image
Dramlouie

I just wanted to give an update as to how Mum is doing. She has now been transferred to a rehabilitation centre, I continued to push for her T3 to be given. I had been giving her two thirds of her dose mid morning but every time I visited she was asleep and depressed in bed. On Monday morning I found her in the chair, awake, happy, alert, 'Hello Darling' she said with a big smile. I couldn't believe it and the nurse came over and said that they had started that morning early to give her normal T3 dosage. Oh my, from a person who didn't know me and was consumed with dementia to a totally different person. She was amiable, thanking the nurses, you wouldn't know that she had dementia. I was so happy, to go from end of life a few weeks earlier and the doctor withdrawing antibiotics but luckily we insisted Mum go into hospital to having my Mum back, it is a miracle and I totally put it down to the T3. Yesterday I wheeled her into the garden, we went blackberry picking, she had a hot chocolate outside and chocolate biscuits and we stayed out there for over an hour chatting about our holidays. Her legs are weak but to go from not knowing me to remembering holidays, people etc. Her short term memory is still not good. Dementia can be reversed, this proves it. The social worker was pushing us to sell her home to pay for a care home, nonsense, my Mum is going home again with a care package. She is off antibiotics. Thank you for all your support and suggestions, miracles do happen! x

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