This post isn’t about myself for once but wondered if anyone could give some advice.
My grandmother is 94 years old and has been on thyroxine for roughly 15 years (she can’t remember when it started) she is currently on 70mg a day. She has always been an anxious person but she has got progressively worse and worsening confusion, her life at the moment is miserable. Due to her recent symptoms my mum has taken her to the doctors a couple of times and they have ruled out anything insidious, in fact they have said she is in great physical shape! She has also had a dementia screening and all is well.
To be honest her mental state has been awful for ages but due to her age we have always assumed that it’s something she would have to live with and just provide support. After being so poorly with my own thyroid levels recently and being very similiar mentally, I’m beginning to wonder if it could be her levels. I’m not sure how we would even approach this with a doctor as I’m sure they won’t touch her with a barge poll at her age and the ‘risks’ of overdosing.
I asked my mum to ring up and find out what her latest test results were and the receptionist couldn’t find a T4 annoyingly but her latest TSH was at 2.7. I know TSH can be higher in the elderly apparently but is it normal for it to be this high on thyroxine?
If we try and push for a dose increase based on symptoms is there any info I can use to back it up? I’m thinking that if they have concluded she’s in good physical shape then they shouldn’t be able to decline it but who knows with the current state of thyroid treatment.
Many thanks in advance!!
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Beau55
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I don't want to speak on thyroid issues, as I am relatively new on understanding them myself.
But can you see if you can get a b12 reading from her records and/or have her tested. Even if she does not have pernicious anemia (a reason for b12 deficiency), there are absorption issues as we age - that can lead to cognitive issues, including anxiety. Just to cross it out as a possibility.
Thank you for your reply, this is next on my list to ask my mum today. I’m sure at one point she was meant to be getting B12 but she is very awkward and sometimes refuses to do anything that is a ‘change’, another layer of difficulty in getting her help! I will definitely follow this up 😊
Anxiety has been one of the biggest challenges for me on my thyroid journey, so I can fully understand how your grandma feels and how you have felt in the past. TSH should be 2 or under and many with thyroid issues do not feel well until this is closer to 1. I would ask her GP to test FT3 and FT4 for a fuller picture. Also ask them to check folate, ferritin, Vitamin D and Vitamin B12, as having these optimal supports thyroid health.Very best wishes to you & your family 🦋
Thank you for your reply, I am the same- by far my worst symptom when I am unwell is crippling anxiety and my thoughts being completely illogical. Seeing her in a similiar state is heart breaking because at least I am able to push for what I need but she doesn’t even realise it could be her levels! We are going to fill in an econsult to try and request further tests ☺️
Your grandmother sounds lovely....and lucky to have a caring family.
When medicated we aim to have TSH at 1 ( 2 if not medicated)
However TSH is not a reliable way to monitor the dose because, as a pituitary hormone, it only reflects the hormone level in the blood ( high to low)....not the individual hormones FT4 and FT3.
FT3 is the most important one, being the active thyroid hormone
The brain needs a lot of T3
She may just need a small increase of levo and a test will help with that
We are not overmedicated unless FT3 rises over range but any hormone increase should be added low and slow...
For accurate evaluation ideally we need...
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG.
GP may not agree to this but...
Might a finger prick test be a possibility or a private bood draw
Thank you for your reply DippyDame, I am going to push for at the minimum a T4 test and then hopefully a dose increases as a trial perhaps. I honestly thought with her age there was no point trying but if they have said she’s in good physical health then why is she so confused! It’s worth a try.
I think I may struggle to do the finger prick test on her. Her mental state is so bad that even the smallest change to her routine sends her into a blind panic which makes her very ill, it’s very hard to juggle risks over benefit with her. It just breaks my heart that if this is thyroid related she’s living her last few years in misery that can be helped.
It would help if you had FT4 and FT3.....particularly FT3. I suspect her FT3 is low!
However if that is too stressful then under the circumstances pushing for a trial increase of Levo may be best. She really deserves better and somebody out there should understand this.
If the initial increase is tiny , say even 12.5mcg, then her response may allow for further low and slow increases.
I'm not a medic but I can't see there is anything to lose this way....and maybe a better QOL to gain.
I'm aged 77 and have had to self medicate with high dose T3 to allow me to function. I don't/ didn't consider myself either aged or frail....just wrongly medicated. I think my medics initially thought I was nuts but after much explanation they now leave me to it. This is madness too!
Your grandmother appears to be physically well for her age but her doctor needs also to consider her symptoms. Anxiety and confusion in someone diagnosed as hypothyroid rings alarm bells signalling undermedication.
I often wonder how many elderly people are written off as having dementia when they actually need to be correctly ( thyroid) medicated.
They owe it to themselves as medics, and to her, to give her another chance by adjusting her levo.
Thyroid hormones are essential for normal development and function of the central nervous system. Thyroid dysfunction is associated with many neuropsychiatric disorders mainly cognitive impairment.
This was understood well over 100 years ago when Dr Ord first used ground up animal thyroid to treat dying patients....
Modern medics are not always correct and they need to accept this.
Sorry, I'm ranting but being "old" and with a complex thyroid condition which I managed to resolve it makes me reach for my soapbox when I read stories like your grandmother's.
Good luck to you both....don't let them grind you down!
PS. I had an old uncle who rode his motor bike into his 90s....Age ( like TSH!!) is just a number!!
Request her GP test B12, folate, ferritin and vitamin D and retest thyroid levels including Ft4 and (ideally ) Ft3
Book the appointment for 9am and make sure she doesn’t take her levothyroxine until AFTER blood test
If GP won’t test…..get Medichecks or Blue horizon test and either pay extra for private blood draw at test clinic near to her, or (more money) a nurse to her home…..if book a nurse make sure they know it’s for 9am….no later
Is anyone actually checking she’s taking levothyroxine everyday…..and Always on its own on empty stomach
So many elderly patients get a dosset box with all their pills and supplements all in together …..which is hopeless
We had post earlier today …..levothyroxine being taken at same time as calcium, PPI and about 6 other medications !!!
Thanks slowdragon, you know what I hadn’t even thought of that! She lines all her medication up in the morning and takes it all at the same time, I will find out what the other meds are and see if I can persuade her to take it before the others.
She is 100% taking it, she’s very neurotic and definitely all there in terms of taking meds, in fact she sits outside waiting for her medication to arrive when boots deliver it as she is always paranoid it won’t arrive.
I have a suspicion her levels are very low or she’s not converting but I’ve felt helpless as it’s hard to sort your own out with GP let alone at 94 years old!
If I have no joy with doctor I may try get her to do private testing but then I’m stuck- if levels are off then I can’t do much without GP prescribing!
I have been battling the same for my lovely Mum who passed away two weeks ago. All her symptoms were ‘age’ related apparently but as I am hypothyroid I recognised the possibility she was under medicated. In the end we did a private blood test as her GP only did TSH unless it was ‘out of range’. Hers was way too high but in range. The private results came with a recommendation of an increase and eventually she got a tiny increase. We did a second private test and she was still too low and again she finally got another small increase. During this time she became much frailer and although I suspected, like me, she wasn’t converting properly I was unable to insist she saw an endocrinologist. At 90 I felt she was written off as far as her thyroid was concerned. I hope I helped make her life a little less anxious and more comfortable but I ran out of time. It was difficult not being her main carer and trying to convince family that thyroid issues are complex and not ‘seen’ by those who are fortunate not to suffer from them. I wish you and your grandmother all the best.
I'm so sorry for the very recent loss of your Mum. It sounds like you tried really hard to help your Mum and you did so despite not being her main carer.
I don't want to hijack someone else's post but I'm in a not dissimilar situation where I'm trying to get an elderly relative help for a possible thyroid problem when they don't think they have an issue and they don't want to challenge their gp. At the same time trying to get my own diagnosis sorted.
It's so sad that it's a battle to get help for thyroid problems and to be told it's just age related it's not acceptable. It's all wrong.
I'm sure your Mum appreciated all that you did for her. Take good care of yourself.
Thank you for your reply. I should have also said that Mum didn’t want to challenge her GP as ‘she is so good to me’. I do think increase in anxiety does happen as we age especially as we see our lives changing and feel like we are losing control but the anxiety with thyroid issues can be helped but is often ignored. It’s hard enough to fight for yourself but even harder when you are struggling to do it without support for someone else. I hope you get the help for your relative and look after yourself too.
Ah I am so so sorry for your loss. It’s heart breaking that proper care with the thyroid isn’t fundamental at their age all due to the reliance on TSH testing. It’s even worse because they don’t often know how to use the internet to look for their own answers so accept how they are currently feeling without anyone pointing them in the right direction.
It sounds like you were a great source of comfort for your mother and she was very lucky to have you looking out for her. I’m in the same situation, r the rest of the family think it’s just anxiety and that nothing can be done but I’ve tried explaining if she’s under medicated she could be living in misery for no reason!
100% Even if you can help make her feel a bit better it’s something. I think that was the hardest bit for me. Trying to explain to family that her life could be improved with just small adjustments to her medication. I got the impression they thought I was a bit of an unnecessary worrier as Mum was in her eighties then and had other health issues. Her thyroid condition was not top of the list for them. Even Mum thought a small increase wouldn’t make much difference to her not understanding that a little can make a massive difference to how she might feel. I do think I did my best in the circumstances but it was incredibly frustrating. I hope you fare better than me. Good luck.
I can't add much clinical advice, as I too am trying (and sometimes failing) to manage this thyroid ride for myself, but my heart goes out to everyone and anyone who is doing their best to advocate for their elderly loved ones. Follow your instincts, and don't let anyone shame you or brush you off for trying to enhance their quality of life. My grandfather passed at the age of 100, and trying to push for his basic care felt like I had to be on the warpath daily...and I am convinced that during the last few years his medication (synthroid) was not being managed - or absorbed - correctly. So many of the symptoms - constipation, drowsiness, feeling cold all the time, congestion, confusion, the list goes on could all be connected to his hypothyroidism. But he was "old" so he got written off, even by many family members who didn't understand these thyroid issues and/or didn't want to be bothered. In the end his medications were managed for him and I know there was zero concern for timing or absorption...I did the best I could, but sometimes I wish I'd pushed harder (I am by no means a "wilting flower" but the stagnation and lack of detailed interest in the system that has become "health care" seems to not ever include either health nor care, especially as you age.) It's hard work to be an advocate (for yourself or anyone else,) but it's damn well worth it! Best of luck to everyone, and just keep pushing.
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