Elderly Mum with hypothyroid sleeping all day

Mum has been hypothyroid for decades and on 100mcg levothyroxine. Mum was diagnosed with vascular dementia last summer and has a very gradual deterioration in short term memory. Christmas Dad she was quite confused and didn't say much. I have noticed she has been more tired than usual and today I went round and she was still asleep at 11am. I gave her breakfast and her supplements in bed and I left her for a few minutes and she went back into a deep sleep. I had to leave her in bed. Her last test results in June 2015 were free T4 24.2 (12-22), free T3 3.8 (3.1-6.8) and TSH 0.08 (0.3-4.2), cholesterol 7.1 (2.8-5.0), serum calcium was 2.58 (2.15-2.55), serum creatinine 107 (44-80), GFR calculated abbreviated MDRD 42 (60-90) serum total protein 65 (66-87), ferritin was not tested. I have insisted she see an endocrinologist and with doctors not wanting to deal with it and her normal doctor dragging their heals and having to write a letter for an appointment I am pulling my hair out. Its my Mum and they just don't care. I have been adding in quarter grain of T3 in the morning for the last month but it doesn't seem to have had any effect. I am so worried about her. I have made an appointment with Dr P for 3 weeks time but he has been ill for the last 8 weeks. Mum takes supplements, B-100, B12, Vit C, Multi Vits, selenium, magnesium, lecithin, garlic, CoQ10, resveratrol, coconut oil, folate, Vit D3 and K2. Mum is quite fit generally and goes for over a mile walk most days with me and is in good spirits. Nearly forgot - her temperature was 36.4 at 11am, and her blood pressure lying down was 102/57 pulse 46, 109/58 pulse 48, 112/65 pulse 47. I don't know what to do, she is still asleep now at 3pm. Any ideas would be appreciated.

27 Replies

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  • I am really sorry you are worried about your poor mother. Left to get on with things herself.

    Maybe her levothyroxine was in too low a dose to give her sufficient T3. Levo is supposed to convert from T4 (levo) to the active hormone required in all the billions of receptor cells for us to function normally.

    I assume your mother has never had her Free T3 tested to see if she was able to convert T4 (levo) normally to sufficient T3. Our brain contains the most receptor cells. This is a link. I would get your mother's Free T3 tested and I do not know why this isn't done on a regular basis.If we don't have sufficient T3 it also affects our heart and every single thing in our body.

    ncbi.nlm.nih.gov/pubmed/228...

  • In June last year her free T3 was 3.8 (3.1-6.8). I keep on saying this to the doctor and the memory clinic, its pathetic. I will go visit Mum again this evening, give her some soup and another quarter of T3, I don't want to overdo the T3. Perhaps I will go visit again tomorrow morning and give Mum half a grain of T3 and then a quarter of a grain tomorrow afternoon. At least its only 20 mins driving. When she went for her MRI after years to telling the doctors she had a memory problem I think they just give it vascular dementia as nothing else showed up on the scan and due to her age its got to be something. We really need to do something about this, otherwise when we get old us hypothyroids will be stuck in a care home in a corner, fast asleep and given a name as demented when its a simple lack of hormones. If it wasn't for Dr P I would still be ill thinking it was my heart, now on NDT I am nearly feeling normal again, only taken them, (actually Dr P) 18 years since my children were born that I started symptoms. I can now walk pain free for the first time in 18 years!

  • I am so glad that you yourself was helped by Dr P and it is a pity he has been unwell over the past months himself.

    We have to use our initiative unfortunately and search for ourselves. It is amazing that, considering how important T3 is, that it is rarely involved in our blood tests as the assumption that we convert to sufficient T3 when obviously it's not the case for your mother. My sister has been diagnosed with the same condition as your Mum but she understands everything you say but has lost the power of speech. We used to talk about 3 hours several times a week as we live quite a distance from one another. It is very hard on both of us as we are close and it is frustrating for both of us but, thankfully, she doesn't get distressed about it. Also she's had no treatment at all as they probably think there's nothing can be done. I've gone on about T3 for about 5 years but as she lives with her husband I am unable to do anything.

    The fact that they don't try anything for her to improve is the worst thing.

  • Something really isn't right there! Her blood pressure and pulse would concern me and the fact that you are having difficulty rousing her would also ring alarm bells.

    I'm not medically qualified in any way, but would suggest that if she's non-responsive it would be advisable to seek emergency assistance. Take care x

  • Mum did sit up this morning and have breakfast and she does wake up, she is a bit deaf, but she said she is enjoying her nap. I am just looking through her supplements to see if anything could be causing it. She is taking olive leaf and hawthorn berry for high blood pressure and has been for years so I need to stop these for the time being. She is on no drugs except levo.

  • Good idea to stop the herbal treatments for blood pressure; obviously not needed at present.

  • I apologise, I did see that your mother's FT3 was tested. She may need some direct T3 added to her T4 (levothyroxine) as her Free T3 is low. On re-reading your post I also see that you are already adding 1/4 T3 and it would be preferable to be towards the upper level rather than low.

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Dramlouie, I'm sorry there's been no improvement on T3. FT3 was low in range in June and should be better on 6.25mcg.

    Elevated creatinine and low GFR indicate kidney disease or impairment. Is her GP keeping an eye on this?

    ___________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • The doctor said its not getting any worse for years now. Mum isn't on a diet or anything, I just try and keep her off gluten. I am wondering if it is the sugar she has been eating over Christmas, cake and chocolates every day, my brother gave her a huge Christmas cake and big box of chocolates which she has eaten herself, half of the cake I have managed to make disappear. And of course its gluten. The doctors don't say much or give out any information, just keep looking at their clocks then 'Next'!

  • Dramlouie, if her sleepiness is due to gluten and sugar she should improve when she's back on her normal diet but I agree with Bantam12, your mother should be tested for a urine infection.

  • She should be tested for a urine infection asap, in the elderly this can have a profound effect with a worsening of dementia symptoms, her kidney function result also shows something is amiss. My mum had the same problems, memory would be worse, confusion and wanting to sleep all the time, it was always down to an infection.

  • I have a bee in my bonnet about calcium - and I can see your Mum's is slightly over range. If Calcium is not directed to the bones then it keeps circulating and can cause problems with the arterial system - causing the arteries to have a build up of calcium. Could this be contributing to her vascular dementia ? Along with the Low T3 of course.

    I am not a medical person - just an observer and Hashimotos sufferer.....

    So glad you are there for your Mum....

    PS - the kidneys are on the same meridian in Eastern medicine as the thyroid - low thyroid can often reflect in kidney issues.... I have nodes on my kidneys that match the nodes on my thyroid ....

  • My father has vascular dementia but no thyroid problems. He also sleeps for long periods and had a sudden deterioration. Many people with vascular dementia have sudden deterioration when a part of the brain is deprived of oxygen and finally stops working, they then often plateau at this new level for an indefinite period prior to further progression. I absolutely think you need to ensure that your Mother is optimally medicated but just be prepared in case it is vascular dementia progression and not hypothyroid.

    My thoughts and best wishes are with you.

  • I was told there was nothing that could be done for vascular dementia by the memory clinic, so I have done research on my own and give her everything that is supposed to help. At least I will know that I have done everything I can to stop this awful disease.

  • It makes me wonder if your father has thyroid problems, the doctor said my Mum was fine when she got the results of her blood test. It was only when I asked for a copy and showed Dr P that he said she was below the lowest limit for T3 and that she was T4 toxic, the GP said she was fine. You wouldn't have anything to lose if you haven't seen the results yourself.

  • Thanks everyone so much, hopefully picking up a testing thingy later on way to Mum's, then drop off in morning for testing and got a doctors appointment 5.30 tomorrow aft. Mum doesn't take calcium supplements and takes K2. All your replies are lovingly received and acted upon. x

  • I know there are lots of possible causes of your mother's sleepiness. But I just wanted to say that when I first started taking T3 in tiny quantities I slept like the dead for a while too. I also staggered badly because I couldn't walk properly, and my memory got so bad I couldn't string a sentence together.

    However, my problems could have been because I had dropped my T4 down to zero far too quickly. It was making me feel so awful I just didn't want to take it a second longer than I had to. (I didn't know any better at the time, I was a complete novice in matters involved with the thyroid.)

    Things only improved when I increased my dose of T3. It was really worth it in the end, but my reaction at the start of it all was rather disheartening. I had expected to be bouncing around like a spring lamb.

  • Oh, and another issue when I started T3 - I was dreadfully iron-deficient, and it probably affected my reaction to T3 an awful lot.

  • Dramlouie the magnesium could be affecting her blood pressure and also the vitd pushing her calcium too high which is not good. If her kidney function is impaired there is possibly a build up as they struggle to excrete any excess. It would be a good idea to look at the supplements she is taking to see if anything is adding to the problems.

  • My relative, also hypothyroid was misdiagnosed with ME for years and then dementia. It turned out to be severe B12 deficiency.

    Your mum's GP should be doing the correct tests for B12 before diagnosing dementia, as many people, as they get older have low acid, which means they are unable to absorb B12 from food. Memory loss and other neurological symptoms are reversible if treated early and aggressively. Here are some links I posted in the PA site recently:

    pulsetoday.co.uk/clinical/m...

    "Professor Andrews said that ‘significant financial and emotional damage and unnecessary disability can be avoided’ from early diagnosis"

    More links:

    ncbi.nlm.nih.gov/pmc/ar...

    "Laboratory testing should be considered to identify potentially reversible conditions that may mimic dementia. Early identification and aggressive management of such disorders may improve a patient’s thinking and daily function. Which laboratory studies to order is controversial. Some clinicians suggest a detailed laboratory evaluation to include complete blood counts (CBC), chemistry panels, erythrocyte sedimentation rate, thyroid function tests (thyroid-stimulating hormone [TSH] and free thyroxine [FT4]), vitamin B12 level...

    helpguide.org/harvard/whats...

    theyworkforyou.com/wrans/?i...

    ncbi.nlm.nih.gov/pubmed/985...

  • Waiting for doctors appointment now. But my friend mentioned her Dad has low sodium and gets confused. Then I remembered something about sodium potassium and it led me to dysglycaemia and metabolic syndrome. Mum has been eating badly over Christmas, cake, chocolates etc, carbs and low thyroid causes dysglycaemia. chriskresser.com/thyroid-bl... I haven't had time to read all of it but this morning Mum was asleep at 10.30am, I gave her breakfast scrambled eggs, a tablespoon of coconut oil and cup of green tea and she went back to sleep. In half an hour she came downstairs and didn't seem at all confused. We had a chat, another cup of green tea and at 1pm she went back to sleep. I am wondering if its an imbalance after Mum has suddenly stopped having the sugar and its now showing itself. Also maybe low sodium as I did put Himalayan salt on the eggs. Mum wasn't repeating herself and was looking at the old family books and remembering everything.

  • How lucky your Mum is to have you looking out for her! I can't add much to this advice except to say that my B12 was low for a long time, and I was sleeping my life away. I had no interest in anything, and just fell asleep at any time during the day. Taking a tablet by mouth may not be enough to help your Mum if this is an issue for her. Get the GP to do a blood test for her levels of B12, ferritin, folate, and VitD ( that was low for me too!). She may need VitB12 injections, this commonly accompanies thyroid problems, and if levels are low she won't be able to fully absorb the thyroid medication she is taking. Very best wishes MariLiz

  • I am exhausted after all the worry and a sleepless night last night. I rang my Mum this morning and she was up, and just getting breakfast. Amazing turnaround. She didn't have a UTI and the doctor said the advice these days is not to use liothyronine or do any T3 replacements. We have to wait for a local specialist to make a decision and not something that GPs are willing to do. GPs are advised that they shouldn't be prescribing liothyronine from the Medicines Management Committee locally. GPs can't initiate it. Anyway, I gave Mum a quarter grain liothyronine last night and she was bright and breezy this morning. Her B12 and D3 are at the top but the doctor said she hasn't ever been tested for ferritin. Her folate is also at the top end as she has been taking supplements for years. Mum has a blood test on Monday booked. Dr P looked at her results last year and said she needed T3 added and it what dosage but the normal GP wouldn't listen, that was in October, she was tested in June and I am still waiting. So it gives us no alternative but to go it alone. I have booked Mum in to see Dr P in a few weeks anyway. Thanks for all your suggestions and support, I was very low yesterday and stressed. It just doesn't only affect my Mum, it affects me too and it affects my children. Does anyone know if having a day of stress would lower thyroid, I just feel a bit off and hypo today, I usually take one grain NDT during the day! x

  • I took Mum to see Dr P yesterday. Mum is cold and tired due to her thyroid uptake due to weak adrenals. So Mum is to increase Rhodiola and Ashwagandha for adrenal support and adding in some Nutri Thyroid and a small dose of NDT and T3. So during the afternoon I gave Mum a quarter grain of NDT and at bedtime 6mcg T3. This morning, oh wow, she is up, dressed and having breakfast. Oh my, truly amazing. On the way home yesterday after the NDT she didn't repeat herself once, was interested in where we were going and didn't fall asleep. She didn't want to go back to bed and stayed up watching tv. Its so simple, going from a sleeping wreck to a human again in a few hours. Dr P asked why no doctor had taken note of her thyroid and when I mentioned that she was already on levo he said that was why. This is from October we are still waiting for an NHS endo appointment. It cost me money but Dr P is well worth it to get her life back. I thought all was lost a few days ago. If your loved ones are having problems then you have to fight their corner and don't believe what the doctors say. I shall keep updating.

  • I took Mum to her NHS doctor today. I told him we had seen Dr Peatfield and he wanted to see the report. I told him the above and there was Mum sitting looking at the doctor, looking well and not at all tired. I told him I gave Mum some NDT (he didn't know what NDT stood for) and he instantly looked horrified, its not in our guidelines, its not recommended, even when I said that I am so much better on NDT he wasn't listening. There is the evidence sitting before him and he was no negative, its like they are brainwashed and can't think for themselves. I have also told the doctors not to tell Mum she has vascular dementia as it is her worst nightmare and would be horrified to know. So he says as soon as we sit down I see your Mother has been diagnosed with Vascular Dementia. Mum didn't say anything but she gasped and looked upset. We got home and with everything else the doctor said I am hoping she has forgotten so I didn't bring it up again. He just wants test for parathyroid and Vit D which the last blood tests showed were high. I shall carry on with what Dr P said.

  • I just wanted to update everyone. I found Mum unable to get off the toilet, she had been there for hours. Her speech was slurred and she was diagnosed with dehydration in a&e. They sent her home the next day but she was very wobbly. Had dizzy spell in hospital. She fell at home during night and cut her arm. She is now very weak and sleeping very deeply. I finally

  • Continued....... getting help now but still waiting for her to see endo since october. Even being in hospital she couldnt get to see one. Her recent results are tsh 0.01 t4 15.2 t3 2.8. They wanted to decrease t4 due to tsh!!! They hadnt a clue about t3 levels. Heart and kidneys they say are ok. One part of test for uti was high but other low and no temp. Mum has a watery runny nose and I wonder if that is linked. I was giving her spatone a few times a week. Her blood pressure was normal. They couldnt believe she was on no drugs, just supplements. She is actually quite healthy just this sleeping problem with dementia. She is terribly bruised.

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