hi, I'm 73 in good health. Ive been on levothyroxine for 5 years, last TSH level was 3.69. Like a lot of my age group I worry about dementia but have been reassured by family and friends, but I do make silly mistakes and sometimes dont notice things. However last week I had an episode where a lack of cognition ie mistaking a stranger for my husband, caused me acute embarrassment.
So, just wondering if poor concentration can be due to hypothyroidism even if managed by medication. I don't want to start panicking that it's indicative of a form of Dementia.
I would appreciate others views and experiences. Thanks so much.
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So we can offer better advice, can share blood test results (with ranges in brackets) for:
FT3
FT4
in addition to TSH (if you have them).
It is likely you will need an increase in Levothyroxine as TSH should always be under 2. Your concentration issues are likely due to thyroid medication not being optimal; please don’t panic!
What is your current dose of Levo? What time was your blood test? What time was your last dose of Levothyroxine prior to the blood draw?
It would also be useful to share antibody and key vitamin tests (ferritin, folate, vitamins D and B12). Anti body tests confirm whether your thyroid condition is auto immune (aka Hashimotos). Key thyroid vitamins support thyroid health so having these optimal is hugely beneficial.
If your GP is unable to complete all the above tests (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
I would think it is highly likely connected to being under replaced with your thyroid hormones, your TSH is high as ideally around 1 when on levothyroxine only
Do you have any recent results for folate, ferritin, B12 and Vit D as these are best optimised
Before I started taking T3 having been on T4 only I was convinced I had early onset but it was all down to a lack of vits and mins and T3 😅
Highly likely hypothyroidism in my experience. I’m 50 and two years ago was contemplating giving up work as a teacher as I’d lost words, cognitive skills, couldn’t remember what I was teaching one lesson to the next. Luckily I had great resources I’d made beforehand. I didn’t even remember making them.
I like my TSH under 1 and T4/T3 around 70% through range. 🌱
Yes, it was when I was titrating up. Started on 25 mcg, then at 8ish sometimes 12 week intervals went to 50, 75, 100, 125 back down to 75 back to 100 mcg now. I had those symptoms until I was on 75/100mcg and also introduced a little T3 from Roseway Labs. They haven’t returned since.
70% through range means that my FT4 blood test result is 70% of the way through the reference interval, which on the testing sites I use is 12-22 for FT4 e.g. a result of 12 would be 0% through range, 22 is 100% through range. A result of 17.5 is 50% through range. So personally I know I do better when mine is over 20 on this particular reference interval.
I think SlowDragon gave you the info but many of us test privately to understand FT4 and FT3 levels. I use Medichecks and Monitor My Health and adjust my dose and explain my real to the GP who will only look at TSH.
It’s been a massive learning curve, especially as at the time of learning I wasn’t particularly with it! Luckily folks here will keep reminding us what to do 🌱
You almost certainly need dose increase in levothyroxine
On levothyroxine TSH should always be below 2
Many people need TSH below 1
How much levothyroxine are you taking
Which brand
when were vitamin levels last tested
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
It be that your under replaced as TSH should be no more than 2 when on levothyroxine, could be B12 deficiency, could be first signs of dementia.
I can share that I seem to be losing words a lot before diagnosis, and even more since levothyroxine. I had a small window recently when I resumed on a lower dose due to overmedication, where I could carry a conversation with struggling for words. So, I can only hope once on the right dose, brand, or other treatment it resolves.
Hmm. I don’t think I would feel great if my TSH was that high.
What are your other figures like? I’ve given up on my GP and I order a Medichecks full thyroid plus vitamins and minerals finger prick blood test and test myself at home - it saves me begging the GP to do tests that they don’t want to do. How much levo are you taking? You might need an increase.
Are you taking statins or antihistamines? Some people think these can affect your memory - others say they don’t.
As for mistaking your husband for someone else - I did that only yesterday. You do feel a bit silly but I’ve had men think I was their wife so it’s not unusual or even all that uncommon.
I’m 75 and I don’t particularly worry about dementia but I do worry about those dementia tests that doctors do - I mean no way could I count backwards in my head from 100 in nines or whatever it is they ask you to do. I couldn’t do it when I was younger and I definitely can’t do it now. I usually know what day of the week it is and the date but when you are retired you don’t really have to bother about that sort of thing.
I remember to turn the gas off after I’ve cooked and mostly remember to check that the door is locked when we go out because my husband who is older than me never remembers and if I don’t do it we often come in and find the back door unlocked.
Post your test results with their ranges and tell us how much levo you are taking and more people will comment.
just had another thought… if you have been particularly stressed or anxious, had sleep problems for any reason, this can trigger forgetfulness and daft things happening. 🌱
good point. We were on holiday and that can be stressful, and unused to the hotel bed. I try not to overdramatise lapses but this was more serious. If I'd been a man, the other guy might have punched me in the face!
🤣🤣🤣 Not this time but even then I wouldn’t worry. I’m assuming you didn’t walk up behind him and put your hand in his back pocket or put a cold hand up under his jumper for fun did you?
Years ago when I was young we were visiting friends of my parents. We were sent to take the dog for a walk. They lived in a terrace of two story flats. When we got back we opened the door, the dog walked in and we followed him, when we were inside I realised something was different about the house so I listened at the living room door - definitely not our parents talking. I’m afraid my brother and I just scarpered and left the dog to find his own way out.
We found the correct house and tried again and never ever mention our embarrassing adventure. Then when she was old enough to know better my mother once got into a total stranger’s car thinking he was someone she knew who was offering her a lift - like you she thought he was someone else. She definitely didn’t have dementia either.
You’re in the right place now though with your problem. People on here can answer almost anything. 😊
Several years ago before being diagnosed with Hypo I had to go to my surgery to collect a prescription, the receptionist asked me name and my mind went completely blank, I just couldnt remember it all. I'm sure the receptionist was very suspicious and thought I was upto something. Very embarassing.
please don’t worry. I had a mother and grandmother both with dementia and convinced myself at 80 I’m next. Never mistaken my husband, he’s 6’5” so not too many about, but was chatting to a lady in a queue, convinced she was our old next door neighbour. The fact that 50 years had passed and the girl couldn’t have been over 30 didn’t occur to me!! 🙄
I remember wondering what the kettle was for and put in the fridge !
When hypothyroid and already taking T4 - Levothyroxine thyroid hormone replacement we generally feel best with a TSH down towards the bottom of the range, definitely under 2 as symptoms of this insidious disease do start creeping in as the TSH rises - signalling for more thyroid hormone support.
Some 20 odd years ago treatment for hypothyroidism was diagnosed when TSH was over 3 :
We generally feel best when our T4 is in the top quadrant of its range with the T3 tracking slightly behind at around 60-70% through it's range.
Monitoring and treating of hypothyroidism in primary care does tend to be with just a yearly TSH blood test and if ' in the range ' the computer doesn't flag a problem.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels so you may also need to have ferritin, folate, B12 and vitamin D run and we can advise where ' optimal ' sits as it is not just somewhere in an NHS range, some of which are too wide to even be sensible.
A friend and I were talking about losing our brains, she said she walks out of the room to do something, and then has to go back to remember what she was doing. I said I did the same, and we both agreed that going up and down the stairs was tiring.
We then looked at each other as we both live in bungalows.
Now I just say my hard disk is full and I need to reboot!
I have no thyroid and for years felt very well on medication. After covid they changed the medication that I was taking and guess what I became a weird weird person. Not at all like my old self forgetting things falling over etc.etc.
Now back to normal and studying Russian History and 77 years old. Don't worry.
I took NDT Thyroid s for years but after Covid it changed and contained less ingredient and I started to feel unwell. Now I am back on it and feeling well again.. I know that when my sister was low on FT3 she couldn't function thought wise either. I do get Levo plus T3 prescribed by the GP but I take my own NDT. He doesn't know this, but I need a doctor, just in case of emergency. I dislike most doctors especially GP's I prefer my own way. That's just me talking.
I am lucky My GP doesn't worry about suppressed TSH. When I left hospital after my TT my professor surgeon handed me a letter stating that my TSH was always to be kept low due to thyroid cancer. I live in France and NDT is banned here that's why I keep it quiet. However, I am easily able to get T3 if I collect my prescription. The Cynomel is made here by Sanofi.
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