Hi I am new here. Has anyone heard of hallucinations with Levothyroxin Sodium?
Juts seen mums medical notes and she changed brand and went on bigger dose in 2015 when she started to hallucinate.
I remember mum saying the sodium part was new and she had reacted to it . I have recently Noticed they ease or stop if she hasn’t taken meds.
Doc said it is dementia but has made me question as she gets clearer when she hasn’t taken them. Very distressing. Many thanks.
Ask for a full report of all your mums medications including as necessary or PRN’s.
Does your Mum live at home? Does she administer herself? Does she have a dispensing system?
The elderly can easily go toxic. Pseudo dementia.
You’re probably right. Family know their loved ones better than anyone.
Are her experiences visual, auditory, taste, tactile or thoughts?
Was your Mum concordant on the lower dose. Could she take that dose again if concordancy could be assured. If she was happy and mentally well on that dose ?
Thanks so much Michelle.
Myself or carers give mum her tablets, so always correct. She’s gone from under active to overactive 0.2 I think.. in 2 months of Just a small 25g increase.
She has some memory and knows who we all are but also now has like a second life with visual and sound hallucinations.. it’s like psychosis. She’s sees children / new husband/ the whole works.. 
we go with it but it’s really hard.
She didn’t take tablets yesterday and I had the best conversation with her last night in many months if not years, her memory was clear and it’s like she was coming back to life. I may be clutching at straws but don’t want to give up and won’t.
Mum has always been sensitive to ingredients and meds.
Thanks again!
Youre not clutching at straws. What you have observed is significant and Dementia is such is terrible illness, its worth checking out. Yes could just be coincidence and lucid times are a common phenomena. I have seen so many elderly with toxicity its a scandal. I cant see it being the Thyroxine tablet itself as she has been taking it for years I presume ? They do have different binders and fillers and you can google that. I’m new on this forum as not doing well with the tablet myself. I’m trying Lactose free Teva. Did you not give all her medication or just not that one. Could be the combination. Please list all meds your mum is on. Which Dementia do they believe she has? Alzheimers, Multi infarct, Lewy body? Does she have any depression? I know its not nice for you but your mothers world does seem nice. How much is she drinking? Does her urine smell fishy? Does she have any breathing problems? Does she have any sores anywhere? Is there any malignancy?
Is her B12 good? My dad was told he had dementia when he actually had pernicious anaemia and by the time the GP found out, it was too late to correct the damage. Also be aware that carers do make mistakes
I’m so sorry to hear about your mum. Her symptoms sound awful and it’s very difficult to watch. My dad had a form of dementia called Lewy Body dementia which gave him hallucinations (he saw and heard people and animals) and affected his mobility so I know how hard it is. He also had an underactive thyroid in his later years but was never given any treatment. I hope you find an answer for your mum. Good luck. X
ncbi.nlm.nih.gov/pmc/articl...
Yes. If it is Lewy Body Dementia, it is critical to get this diagnosed. Often patients with Alzheimers are given anti-psychotics when they are "difficult." This is absolutely the wrong thing to do! Patients with LBD can be made worse with antipsychotic medications.
LBD is what my mother had. She often "saw" animals on her patio or on the balconies of other tenants in her building. Later, she insisted there was a demon in her curio cabinet. *sigh*
She needs to be checked by a neurologist, who will also test for such things as impaired movements. mayoclinic.org/diseases-con...
The active ingredient of all thyroxine products I know of is Levothyroxine sodium.
In the past, this has been simplified to Levothyroxine or even just Thyroxine. But it is just what is printed on the packages that has changed - not the actual substance.
(The reason for these changes seems to have been to ensure accuracy and avoid any possibility of ambiguity.)
Some people do not do well on some makes of Levothyroxine. Has she had any thyroid blood tests since 2015?
Fhxt1, As helvella says, some people don't do well on certain brands of levothyroxine. It is also important for the brands to be consistent and not change each time the prescription is fulfilled.
What dose is your mother on, and what brand/s?
Mum has Almus from boots. 125 reduced to 100 as they found out she’s gone overactive in a few weeks.
When the dose was 125mcg, there must have been another brand because Almus (which is actually Actavis inside the box), don't make 25mcg tablets. The 25mcg tablets might have been MercuryPharma, Teva or Wockhardt.
TSH of 0.21 is not necessarily 'over active' (or overdosed as we prefer to call it). If overdosing is suspected, then the FT4 test should be done at the same time as the TSH test, to see what the actual thyroid hormone level is.
If your mum still halucinates on the lower dose, then it seems unlikely that the thyroid hormone is the cause. Unlikely, but not impossible of course
If you can get hold of some test results from when mum was/is on the lower 100mcg dose and post them here, it might help to build up a picture.
I will also mention that feeling better on a day that levothyroxine hasn't been taken, is actually quite a common occurrence. I have often experienced this myself. One day without levo and I can feel so much better. But by the next day, I am beginning to slide downhill into hypothyroid state. So it's very important to realise that this can indeed happen, but it is a temporary phenomenon. It doesn't take long for the negative aspect of too low levels of thyroid hormone to begin to have an effect.
If you haven't already done so, do look into possibe vitamin B12 deficiency. This is another potential cause of dementia like symptoms.
When did she last have full thyroid testing:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12 (especially B12!)
folate
ferritin
How much levo is she taking? Do you mind if I ask how old she is?
I fully believe that hallucinations are a hypo symptom - low FT3. The brain needs a lot of T3, so if she isn't getting enough, all sorts of brain-related symptoms can manifest. It could be that he conversion is getting worse with age. But, you'll only know that if you test FT4 and FT3 at the same time.
I know it would be easy to jump to the conclusion that it's the levo doing this - poor old levo gets blamed for everything! But, without a lot more information, I don't think we can automatically come to that conclusion.
Thank you.
Mum has some of these done privately as the doc refused. They only do TSH. She is rock bottom on Vit D and low on B12 which we are now working on.
The antibody tests don’t ring a bell. Don’t think she’s very had then.
Mum is 79 but been fit, well and young for her age until recently. Her joints get very stiff and painful too especially knees.
Stiff and painful joints could be down to the low vit D.
It's scandalous that they only test the TSH! What was her last one? It probably doesn't matter very much about the antibody tests at this poing, but she really needs her FT4 and FT3 tested. A TSH on its own isn't going to tell you if she's on the right dose, whatever the doctor believes.
Yes I know where you’re mum is coming from inadequate treatment of thyroid can manifest as psychiatric symptoms. I hate it and specially when I deal with other stuff but I can say there is hope as long as it’s treated. I take a small dose of cytomel and I seem to be more even keel.
I get confused if I go over medicated on my thyroid medications. I’m 61 and Ok normally. But if my TSH is suppressed or T4 or T3 too high then I can get confused and can’t walk properly suddenly. As soon as I lower my dose I’m fine again. Although it can take a few days. Could you reduce her T4 and instead if the extra 25mcg do it every other day. Or cut the increase back to what is was. Also some brands can give you side effects that are unpleasant like TEVA. Not good.
I do completely understand your situation as my partner with their father is in a very similar situation.
It’s all very sad and can be draining and upsetting.
Thank you!
Yes we have reduced the dose and she’s already able to walk better and is clearer in the mind. I am so grateful to hear everyone’s feedback, as I have been fighting this on my own for three years.. she gets lots of UTIs and I even sent off for tests in USA which pinpointed infection which mum is now in antibiotics for and has picked up.. when mum comes back,for a few mins or hours it’s wonderful. I am have been fobbed off so many times but I keep on pushing for more tests.. juts have a real gut feeling I am right and not to give up. So many elderly don’t have anyone to fight for them.. it’s terrifying that so many could be on meds for life which they are allergic to and giving awful symptoms which are then treated with more meds.
Thanks for your time x
Fhxt1 As you've reduced the levo dose, please don't wait for months before doing another thyroid test. After a dose change, wait 6-8 weeks maximum and then re-test. For the most accurate information, TSH, FT4 and FT3 should all be tested. If the NHS won't do this, then seriously consider a private test (info about various companies can be found on the TUK website here thyroiduk.org/tuk/testing/p... )
Also, be sure to do the blood draw first thing in the morning, before any food or drink (except water), and ideally an absolute minimum of 12 hours after the last dose of thyroxine.
It's very important to be consistent about thyroid testing. Ensure all tests are done around the same time of day (i.e. early morning), and having left a similar number of hours after the last thyroxine dose. Inconsistency of testing times etc can be a common reason for apparent discrepancies in hormone levels, prompting medics to keep chopping and changing the dose when in fact it may not be necessary.
UTIs are common in older people, especially if they can't get about much. The infection itself can cause confusion.
I worked in care homes and if someone (many already had dementia) suddenly became more confused the first questions we would ask were if they had an infection or were constipated.
Try to make sure she drinks plenty and goes to the toilet regularly.
I agree with what has been said about Levo dosage too, but the UTI almost certainly contributed as well
Is your mom maybe also getting medication to sink cholesterol ?
Statins are a no-no, especially for older people. According to Dr Malcolm Kendrick in The great Cholesterol Con the only group where they have been shown to help is in men who have had a heart attack. Although there are no doubt risks in having a very high level, cholesterol is essential, is manufactured in the body and helps repair damaged blood vessels. Hypothyroidism causes a rise in cholesterol anyway as the liver has problems clearing it as fast as normal, but I'm almost sure that statins interfere with thyroid treatment as well as other bad side effects.
Okay thats why I asked my mother in law also has part thyroid removed and Takes L Thyroxine- doctor gave her Statins and this caused her to have the most horrific hallucinations- thats why I asked to rule that out. As soon as she stopped the Statins the hallucinations went away - she also saw and talked to people who already passed. I hope you find some answers. Wish you lots of strength
Good call then. I thought best to mention it just in case you were going to urge statins instead!
👍🏻Thank you
Not sure if you are aware but recurrent/chronic infections can cause hallucinations and confusion, particularly in the older part of the population? We noticed this with our parents, particularly my mum, who was on Levo. Perhaps your mum is experiencing a combination of effects from infection and reacting to the excipients in the Levo? The abc themselves may also have an effect as well.
I hope she feels better soon and you get to the bottom of what is going on x
Sorry, posted before seeing your answer. Confirmation anyway!
Hi Fhxt1
I have read that some patients are having their T3 (liothyronine) taken away and it is being replaced by T4 mono therapy, especially psychiactric patients apparently. This has meant that they go down hill very quickly and it is a dreadful state of affairs. Its all down to cost of T3, but may be your Mum could do with some T3 added to the Levo, even a small amount, but you would have to sort this yourself as probably doc wont prescribe. Also sometimes pharmacies will use different types of levothyroxine especially if they are cheaper or they cant get a particular make. This happened to my son recently. It is really much better to keep to the same make, but might be more tricky in the nursing home. May be some have more sodium in than others and I think that can also make a difference. I suspect they are only checking the TSH as alot of places now will not even check FT4. If you dont already it would be a good idea to get printouts from the past few months so you can see for yourself what they have actuslly been checking, rather than them just telling you things are "normal". Vitamin D and B12 need to be optimal. All the above mentioned tests need doing as mentioned by greygoose. She could be low in iron (ferritin).
Good luck with it all.
JaneCx
I am so very grateful for everyone’s time and feedback. It’s very helpful to me. I will make an appointment with the doctor and discuss some of the above suggestions. mum has been very bright the last 4 days without Levo but keeping a very close eye on her. They have found she has very low protein in her blood and doing some more tests for that too.
Thanks to everyone. It’s a huge comfort to speak to people with experience xx
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