I know memory is affected and I’ve heard of brain fog but I’m not exactly sure what symptoms these involve.
I have been finding that I’m losing words and names - fairly infrequently but often enough that close family notice. However, more recently I’ve noticed that on occasion I say completely the wrong word. Like last week I was trying to draw my daughters attention to a rainbow, and I pointed at it and said Penguin 🐧! We weren’t talking about penguins, I don’t have any special interest in penguins - I have no idea why I said penguin. And I wasn’t even struggling for the word. Penguin just came out naturally as if it was right.
Is this normal for thyroid problems? I’m 46 and have Hashimotos. (Currently trying to get tested for Pernicious anaemia but haven’t been diagnosed)
Thanks 🙏
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EllsBells591
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Yup - like a game of Pictionary in our house often (but I’ve got a couple of other auto immune things going on too!). I note your age - could be menopause related too - can I recommend a purchase or a lend from the library of Davina McColls excellent book Menopausing - might point you in the right direction.
My husband has perfected his poker face so he no longer looks so frustrated when, in the middle of speaking, I pause (for what feels like an eternity) trying to think of the word I wanted.
My children (7&5) often look at me like I've got two heads because I've asked them to put their dirty clothes in the dishwasher or something.
It drives me bonkers. It's much better now I'm nearly optimally treated.
I do this too! And it’s so frustrating when they think you’ve finished talking! I’m always having issues with fridge vs dishwasher vs walking machine too 🤦♀️🤪🫠
Your word confusion could easily be the menopause. Google "Word Confusion & Menopause" to get some fast track information because it's very stressful when you know you are messing up words
For the last 30 years or so, but getting worse - I can, mostly, recalI the initial of the word I'm trying to remember - and my lot "guess" what I mean! [I'd be rubbish at public speaking (:)] In frustration at home, I end up going online and entering a phrase describing the word I'm looking for - until I find it!
oh I have this… and I teach! I’ve had to turn it into a joke with my students - ‘guess the word I’m looking for’! Nightmare but it’s got better as I’ve had to work hard at not being anxious about it. Found the more I worried the worse I got. Try not to focus too much on it if you can? Mine has been menopause and thyroid related for sure.
You nention PA - this can be difficult to diagnose due to false negatives. Due to gut surgery my B12 tested low and I inject weekly. At 77 friends tell me my recall is good however I do occasionally forget the simplest of words...
Yes, me too. I'm always putting clothes in the oven, dishes in the washing machine, dinner in the tumble dryer! As for names... I muddle up family names and at work I just go blank and forget names completely. It's very frustrating. I think it's partly menopause, partly thyroid and partly because I'm often multitasking and my brain just can't keep up.
It definitely happens with the menopause, but I think the other two mentioned are in the frame too. Thyroid and B 12 deficiency.
Twice now I’ve said funeral when I meant wedding… embarrassing. Reversing words too, par cark ….all kinds of funny things. ‘Hearing’ a completely different word spoken from someone…it’s a male dog instead of a female! Strange stuff for sure. I’m on HRT so not sure that’s helped! Also on thyroid meds and chomp on b12 although no diagnosis of the latter.
Good luck, we just have to laugh at ourselves I suppose.
EllsBells591, I thought I was in early stages of dementia, going same way as my Mum, but I was 56. Shortly after, my Mum died and I got a Hypothyroid diagnosis and levo. Word recall improved and also my capacity for solving problems, writing important letters.
Recently, I began to struggle again, not as bad but my bloods showed that my T4 levels had fallen from 65% through range to 34%. This was due to my levo 100 mcgm (Accord) not delivering the correct dose, I was being under treated and going hypo again. Now on Vencamil and things have improved, but not there yet.
Thank you so much - I will tackle this with Doctor when I talk to him on Thursday. It's only a 12.5 increase so hopefully he will agree. I feel so ridiculously tired atm and have a new job - falling asleep at my desk and struggling to focus are not things I want to be doing right now!
Aurora12, I have been taking Accord for ten years after a similar to do with TEVA not delivering the correct dose. (They, Teva had their licence revoked after MHRA received yellow card reports.)
So helvella reported Accord to MHRA, some time ago I think. I might have "survived" longer because I also take some T3. I felt awful in August during a holiday and was due an annual review with blood tests. My T4 had dropped from 65% through range to 32%. GP agreed to give me new scrip for Vencamil, feeling better than I was but still not right. I also sent in a yellow card.
Thanks a lot, crimple (and to Helvella!). I've never felt optimal with any brand ( - have high RT3 and both antibodies - but I'm not confident to get/take T3 by myself.
Our GP/Endo won't prescribe/test T3; GP only does in-house meds reviews with just TSH b/test , but, surprisingly, 'cos I managed a Telcon with a newer GP this year re: menopause and mentioned private test, GP did FT4 too!
You’ve had some very helpful responses but be aware that what you’re experiencing can be a symptom of several conditions.
EllsBells591, so your T4 is only 52 % through range and T3 even worse, only 24% through range. You need an increase in levothyroxine, in my opinion. Your TSH is still within the range to keep GP happy! To work out percentages go to thyroid.dopiaza.org and just fill in the test result and the ranges. In my opinion you are a poor converter and may need T3 to feel well. Need 6-8 weeks on increased levo and then another test and note how you feel. Good luck
Thank you so much!! I’ve been wondering about this for while. I’ve actually had a more recent TSH test from the doctor when I requested a PA test and that showed 0.24 so I don’t think he’ll give me any more T4. I’ve never felt any improvement on T4, and have been wondering whether to try to get some T3 privately to try.
The doctor didn’t actually do the Pernicious Anaemia tests I wanted, maybe it’s worth giving T3 a go?
Edited to add - I've just looked back over my results, and actually on one of the times when I think I was getting 100mcg of levo instead of the 87.5 that I'm on now, my FT4 went up to 20.5 and my TSH went down to 0.16 but I my dose got decreased because 0.16 was thought to be too low.
I think it would be a good idea to pursue the T3. I know we might not be the same but like you I did not notice improvement on T4 but with T3 the improvement was obvious, though not at all what I expected, within hours of taking it. An opinion coming now, I hope you don't mind. I didn't go privately, I used a combination of carrot and stick with my GP who became supportive and referred me. The first endo said to increase Levo and luckily my GP said that would definitely not help and referred me again, I chose an endo I knew would prescribe T3, he spoke only about 2 sentences and that was it, T3 prescribed. I've noticed on here that people who self-source T3 seem to have difficulty persuading their GPs to come on side. I've wondered if the GPs feel undermined or mistrusted when patients do this. The T3 hasn't improved my word-scrambling, I definitely still Penguin!
PS Only just noticed you too are vegan!
PPS and now I've seen that you are also wondering about PA, I made the mistake of supplementing before being tested (because - new - GP would not allow blood tests until I had had a consultation and that meant waiting weeks while I had all sorts of B12D neurological symptoms. Why didn't I think of private testing???
Long ramble because it's so nice to see another vegan who is similar.
Hey thyr01d - sorry it's been so long I started a new job and kinda got distracted! Thanks for your response, and happy to 'meet' another vegan too 🌱💚 I'm still trying to get to the bottom of it all - need to do another blood test as Doctor did up my Levo back to 100mcg but also put me on the hormone patch. None of it seems to have made any difference but I've had a nasty cough and cold for nearly 3 weeks which hasn't helped wrt knowing how tired I am. Brain fog, joint aching and balance issues definitely haven't gone anywhere though 🙄. I need to give this patch a proper go whilst I'm not ill - retest the B12 now I've been consistently taking officially buckets of the stuff daily, and then try the T3 I think.
Hi EllsBells, I hope the new job is good? My symptoms of brain fog and balance have definitely improved (and other symptoms too) on loads of B12 so now I'm reducing back to a maintenance dose to avoid depleting the other Bs. There are so many factors, I really hope you are soon improving - perhaps by Christmas?
EllsBells591, the classic dosing by TSH rather than looking at T4 and T3 numbers. They think you are over medicated but clearly NOT when you percentages through range are low. Contact one of the admins for the paper you can print off about below range TSH.
Thanks SlowDragon. I do fairly well with protein, but if I am more active than usual I have a very good quality supplement I use enrichd.com/collections/pro...
Vitamin D is 127 nmol/L
Ferratin 115ug/L
Folate 30 nmol/L
B12 - Active 44.2 (hence the test for PA) and 382ng/L
I supplement all of the above (other than Iron which I'm really struggling to fit into my schedule, but I did supplement quite heavily a while back as it got down to 18ng/ml).
I am not soya free, I've read very conflicting reports on it. I make sure I don't eat it within 4 hours (generally 6-8 hours) of taking my levothyroxine though
When I first got diagnosed with hypothyroidism and for a good few years previous I was very switched off forgetting names especially when watching TV and not remembering a well know actors name. At work I used to have vacant spells and a few guys at work used to joke you away with the fairies again . I seemed to be terrible with directions driving even if I'd been down same way multiple times. When I started on levothyroxine I got worse when on 50mcg and my family were worried I was getting dementia at 49 . Then got put up to 75mcg and brain started improving slightly then nose dived and got really ill and couldn't function at all. They did tests and tsh was high so upped my levothyroxine to 100mcg. Pretty straight away I improved in energy and state of mind to the point now after 7 months of been on 100mcg I am more switched on than I have ever been in my life. What dose are you on now?
Hope you get sorted out with your meds. Is 82.5 mcg what you leveled out at or are you still in the process of increasing doses.? Maybe another increase is what you need.
Oh yes I suffer from it, it became dreadful before diagnosis when I was really poorly I couldn’t even remember my friends names as I was talking to them - dreadfully embarrassing. It remained problematic on Levothyroxine. Mine manifests as the inability to recall words it’s somewhat better since taking NDT but it can still happen. Occasionally I use the wrong word but it is usually very similar to the one I meant as if I store words alphabetically in the filing cabinets of my mind and I pulled out the card next to the one I actually wanted. The jump from rainbow to penguin is intriguing. It’s a very strange symptom, I presume it’s something related to body clocks going wrong and upsetting anything involving considerable precision, or not enough T3 that the brain needs lots of (which may be one and the same thing) but I don’t suppose anyone really knows why it happens it will have been ignored by the white coats as unworthy of study….as ever. I think it would be rather interesting to know why it happens.
Getting your medication optimised ought to limit it somewhat.
I stand corrected there is some white coat activity on cognitive symptoms after all. Seems word recall is a known problem increasing with the severity of hypothyrodism. It seems to cause problems in the function of the hippocampus leading to the problems with recall. It appears to be reversible with correct thyroid hormone therapy. Those who were very overt (this was so my case) may not get full recovery from it, but I suspect T 4 monotherapy does not fully correct it but combination therapy can. I hardly ever suffer it now on NDT.
Wow, thank you for this. I will take a look at the paper. I’m glad things are better for you now. I feel better now that I have a plan; increase Levo, if that doesn’t help try T3. Thank you!
Hi EllsBells591
My sympathies for your situation.
In hindsight, when I've been deteriorating the last three years, have noticed a word switch in my mind for the last two years when I'm planning to mow the lawn and think: "I'm going to iron the lawn"!?! No reason/connection that I can see.
Coincidentally, for about 10 years I've been losing my (previously excellent) long-term memory.
My penguin moment was pre-diagnosis when my friends admired my new boots and asked me where I bought them. I told them confidently I bought them in Boots and they looked at me totally perplexed and asked "what....Boots the chemist?!". And I just knew it didn't sound right, but every time I tried to recall the right word my brain confirmed it was correct, and I had a little chuckle how funny it was that I could buy boots in Boots. I was so confident it was the right word, and bless them they just said a bit bemused "oh, I didn't realise Boots sold footwear too...". It was only a couple of days later I suddenly thought "oh I meant CLARKS!". Both big old-school highstreet brands I guess 🤷♀️😅
It was my conviction that my error was completely right that floored me. It wasn't just a slip of the tongue. I struggled with recall for a long time, and people got used to me filling in missing words with "thingy" or "whatsit", and I struggled to recall even my siblings' names quickly. I honestly think that at the worst point if someone had asked me my own name it would have taken me a couple of seconds hard effort to recall the right word.
The best way I can describe it is that it's the same thing that happens when you're very drunk - the words are still there, but the effort to recall random words is massive.
The good news is that for me it did eventually get better post-diagnosis and now it rarely happens. I had to do all the things that are recommended on here (levothyroxine, keeping on top of my supplements and iron, gluten free) but it has all worked out for me. I really hope it does for you too🤞 Keep us posted how you get on! 🙂
Thank you - that totally resonates. It 'feels' correct to me also when I get words wrong at times. More often though I come up with a similar word and know it's not right. The penguin situation was new for me, although it has happened since but not with such a funny word!
At the weekend my husband and I met his niece. I sat there for ages trying to remember her kid's name but it wouldn't come to me, so I asked how her family was rather than mentioning any names. But eventually it popped into my head - she had twins, and that info allowed me to remember their names.
Forgetting words and names is a permanent problem for me these days, and is getting worse as I age.
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Post thyroidectomy T3 confusion!
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