Hi all, has anyone been tested for dementia as I am convinced I have it. I cannot concentrate on anything, drift off mid conversation and can't carry out simple tasks that I could do automatically as recently as 2 years ago. I used to crochet and can no longer read a crochet pattern as do not understand it any more.
Have read that there is a strong link between hypothyroidism and dementia as the brain requires adequate thyroid hormone to function properly and as my thyroid is not being adequately treated, I believe that I am destined to get it, if I don't have it already.
Any advice or thoughts would be appreciated.
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sobs1962
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i thought i was heading for dementia b4 diagnosed hypo. Did have afew tests that were worse than useless. I Now i think it is 'just' the hypothyroidism.
EDITED: just seen your latest results. no wonder you can t follow the crochet pattern
Thanks for that but my brain problems are getting worse and have anxiety,depression and borderline personality disorder as well which is making me the most negative I've ever been. Don't know whether to contact my GP about it or not as if this is what my life is going to be like from now till death,I really don't want to carry on.
Did you manage to get the dose increase that was advised on here when you posted your results? Your TSH is too high and your T3 too low. I strongly believe that it is the T3 that will make the difference. I felt like you in 2010 and asked my GP for a referral to an endocrinologist who then prescribed T3 as well as T4. It made all the difference and quite quickly too. Now I know it’s not so easy to get T3 prescribed now so you may have to fight for it or see a helpful doctor privately. I hope this helps and wish you all the best
Yes, levo as been increased to 100mcg and blood tests scheduled for mid January and I honestly believe that I need T3 as my depression is treatment resistant and whilst I realise that they have to extremely careful with it I believe it is what I need and not prescribing it due to cost and not clinical need is an absolute disgrace. If I had to source it privately or see a doctor privately, I'm afraid I would just have to stay ill as I simply cannot afford it.
I quite agree that not being able to get T3 prescribed is a disgrace! There are still some endocrinologists in some areas willing to prescribe and some CCGs willing to pay. There may be others on here who can point you in the right direction...
Wow! I can't believe I've got almost identical to you, sobs1962. I have BPD plus over past couple of years, getting worse since my father dying last year, i have early mild dementia, I believe. So depressed
You believe you may have dementia, well that's sad, but I have had a few informal tests to check, such as being able to draw a clock face and putting all the numbers in the right place and I can do that. I understand where your fears are coming from and when you have BPD, you overthink absolutely everything and your mind goes straight to the worst possible scenario and then you worry yourself half to death. Noone really understands those with bpd and how your mind tortures you 24/7. The fact we despise ourselves and believe we are bad people only makes things a million times worse. Are you receiving any treatment for your BPD and where are you? I'd like to stay in contact with you as we have so much in common and as we understand each other much better than most other people we could be a source of support for each other. Up to you of course, no pressure.
Thanks for your reply, it is so heartening to come across another individual who has 3 crucial things in common with me: a Borderline P.D. diagnosis, hypothyroidism, a fear of and may be even actually being in early stage of dementia, plus similar age (I'm 61yrs old). No one really understands those of us who suffer from BPD (which is one reason why i am alone, without partner, or children. I live in London, UK, and was offered 6 month DBT group therapy, from February - July of this year. I had hope, but seems such an abrupt ending. Rage against the ending which feels like rejection, i feel more lonely now than b4 treatment even! The psychologist running the group might be able to offer some 'trauma therapy' but only on our next Zoom session in November.
I'm glad you're in the uk, so now I can tell you about the therapy I'm having. It is called Structured Clinical Management pathway and is specific for people with BPD and is based on DBT, but is much longer term actually involves, a 121 session and a group session each week and lasts for 18 months. Please go back to the psychologist and ask about this, I'm sure they will know what it is but you'll probably have to wait, but at least it gives you some hope, that something can be done, it's either that or just be miserable and terrified for the rest of your life and I'm sure you don't want that for yourself and I don't want that for you either.
OMG! That sounds more like it. 18months, a proper length of time to absorb DBT skills, practice properly, get feedback and support. I actually feel the short term 6 months was simply not long enough. Like a crash course. I am SO GLAD to meet a fellow sufferer. Thank you! And I'm making a note of the Structured Clinical Pathway treatment. I need hope!
Reading your other posts I notice you were taking a PPI - now stopped. Perhaps your B12 is low and the amount in your B Complex is not enough. PPI's can affect the uptake of vital nutrients in the stomach. What was your latest B12 result ?
So much information on the internet about the connection between the gut bugs (microbiome) and the brain. Dr Datis Kharrazian is a good place to start and Kelly Brogan too. Please ask if you cannot find the information. How is your diet ?
Your low in range T3 may be the cause of your depression as the brain needs lots ... 🌻
Stopped taking PPI in February and taking super b complex which contains 900ug which according to bottle is 36000% of NRV. I truly believe T3 is the answer to all my symptoms but actually being prescribed it will be the battle I need to fight but I don't know if I have the energy or motivation the way I'm feeling,I have just about given up the will to live.
Previous B12 result 546ng/L( 211 - 911) was on cyanocobalamin but not best and only on for a few weeks have been taking Igennus Super B Complex 2 each day but is a high dose of 900ug which is according to the bottle 36000% of NDV so doubt I'm deficient and hoping that when bloods are done in January they'll check B12,vit d, folate and ferritin, but no guarantees unfortunately.
Your result is fine. If you were supplementing at the time then results will be skewed and only show what is circulating - not the amount in the cells. No point in testing whilst supplementing. Did you look at the link I posted for you above ? Go by your symptoms - many of which can and do overlap with thyroid.
The B12 link above will give you so much information ....
Have looked at it but don't think I have the symptoms but apparently need to be at top end of range to feel well and will stop taking all supplements a week before next blood test so as not to skew results.
Yes I agree with Marz, at least 4 months clear of all b12 supplements and energy drinks or results will be skewed.
So, when my folate was low I became quite mentally unstable and had a strange depression, which completely stopped when I raised it, the difference was astonishing.
B12 and folate cannot work without each other. Folate should ideally be in the top quarter of the range. I'm at last on b12 injections for my deficiency.
Yes, as Marz said, gut biome is very important. Sounds like a lot of brain fog, which is also a problem with thyroid. Some of that is acerbated by gut problems. Gluten free etc may be helpful. (Izabella Wentz's books are good in this area.) I started taking oregano oil capsules a few months ago and am feeling better (I take other things, including selenium, which I rank as one of the most important and necessary supplements for thyroid). Please don't give up (and don't let your doctor put you on SSRI's until you've tried dietary changes and supplements.) Hang in there! There's a lot of people here willing to help!
My endo suggested taking a selenium supplement of 200mcg twice a day but I think that is too high. Which selenium do you take, at what dose and when do you take it?
Once a day is fine and when the pot runs out give yourself a break for 6 weeks. Read SeasideSusie's posts for good vitamin and mineral advice. Folate is in your B Complex so should improve. Result should be in double figures ...
Have you done the at home 'sage' test and the peanut butter test. These will give you an idea if it's early dementia.
Lots of medications can cause impaired cognitive skills and of course under treated hypo.
Before t3 I had times I couldn't string a sentence together or think coherently and I was unsteady on my feet. I remember clearly Xmas 2014 I was ready to give in, I couldn't see the point anymore, I was in pain all the time, miserable, constant anxiety, panic attacks, sleeping all day, I had lost the will to live. 4 months later I had an appointment with Dr peatfield and my life changed, within days my symptoms started going, by the end of 2015 I was getting back to the old me.
Don't under estimate the effect of poor thyroid treatment. I am sending you love ❤️ google the at home tests xxx
Do get your B12 , ferritin, folate and VitD levels tested, a blood test can be done for all of these !
When my B12 was low, I was, like you, sure I had dementia. I couldn’t concentrate, was forgetting words for things, even in mid conversation. There are other symptoms that can be present if it is low B12.
How is your balance? Do you find yourself bumping into doorways? Have you any pins & needles, blurry vision, or anything else that you’ve noticed along with your brain symptoms?
I do hope it’s only low B12, because that is definitely fixable with regular injections.
The only way my levels will get tested are if I do a private blood tests and can't afford to keep doing that and my husband says he is sick of me blaming everything on my thyroid so doesn't want me spending OUR money on private blood tests and that I should listen to my GP and endo as they are the EXPERTS.
I’m very sorry to hear that, it will make things much harder for you. Can you afford to try a B12 sublingual spray? I have used one of those to top up my levels between injections, and it did help. The spray goes under the tongue, and is absorbed through the membranes in the mouth. Which means it bypasses the gastric system, where issues with absorption are based.
Ok, will do, that was my plan anyway but sometimes I forget to take my medication and my supplements and it drives me crazy,I'm so easily distracted and constantly stressed and worried. Will stop all supplements a week before next bloods.
Yes there is a strong link between undertreated thyroid problems and dementia. In fact it was known as hypothyroidal dementia but is now known as metabolic dementia. I have this form of dementia having been diagnosed some 15 years ago while suffering the worst of my thyroid problems. For years I was given inadequate thyroid treatment and it has damaged my brain. In the end I decided on T3 treatment and my dementia has much improved. Too much damage has been done for it to go completely and my memory is completely shot along with my number processing capability and multitasking ability. I now know that a head injury has damaged my pituitary and this has wrecked my endocrine systems. Getting Endos to understand this has been an ongoing war!
Good luck with reviewing your thyroid treatment and associated vitamins.
I wish soooo much that the doctors would actually listen to the patients instead of constantly focussing on blood test results and if you're within range you're FINE.
I am also concerned that my memory isn't what it was. Names don't come as easily to me, I have to think about spelling words whereas I was spot on before & I can lose track mid conversation sometimes. Obviously, I hide it but like you it's troubling me. I have been wondering about T3. Don't know if I'm deficient in B12. I also tried private blood tests a year or so ago & as you say they are not cheap. My levo dose feels right. I tried Ashwagandha powder for 2 weeks. It helped me to sleep better & definitely gave me a buzz but after 2 weeks I started to get a headache so stopped it. I'm now taking magnesium citrate to help me to drift off & it seems to be working. Fortunately, I'm not depressed. I don't want to go to the doc with this & have it recorded on my file.
I'm sure we're not the only ones but I hope our friends on here can help you.
I have been told that depression and anxiety can cause cognitive problems and when you worry as much as I do and are permanently stressed and extremely self critical, every tiny thing becomes a massive issue. I never thought that I would have to fight so hard to be listened to or treated for any medical condition,it just shows how far down the NHS has gone.
You are so right. Regarding hypothyroidism we feel at a loss. We know we are ill but boy, what a task getting the right help. Thank goodness for this site. Through experience these guys know more than the quacks. Don't give up.
Sorry to hear about this, what you describe does sound like classic brain fog, but symptoms with hypo and so wide and varied its difficult to be sure.
My example of brain fog is I would hurry out my front door putting my coat on with full intent and purpose then by the time I get to the front gate would forget why I was leaving the house. Its wasn't a memory recall problem, it was my brain just would just pause, like a computer going into suspense mode awaiting next clear instruction. Often I woudl stand at the gate not know whether to turn left or right.
I would certainly start my suspecting brain fog over dementia. Having said that its quite easy to test for cognitive impairment and all GPs can do this and may be better to get this done if it worrying you.
I resonated with your partner comment, I find people fall into two camps, people who get possibility that understand thyroid conditions are complicated and need investigation and 'the GP knows best' crowd. What I have learned is there is little point trying to win over the 'GP knows best' crowd - you will not win them over with facts and reason. Actually it can be quite demoralising as you start to doubt your own mind. I would find a way to pick your way through this by not shutting them out but not trying to win them over.
I tend to find it more in older people who grew up with the GP being a 'pillar of the community' and 1950s NHS buts also reason its down to whether people get their information from reading or listening. The latter tend to favour 'experts' and the NHS does very poorly here.
Most my foggy symptoms went quickly with Levo but I get other symtoms and cycles. I favour vit d (3000 ui a day) and having the most benefit. I take B12 too.
But try other things too, like good diet, more exercise if ever of these are a challenge for you.
Finally keep a health diary of symptoms and how you feel. It helps add structure to what is a multi month cycle and feedback loop as you try different things to re-balance. Take it with you when you see your GP and be prepared to talk to it.
To be honest,my diet isn't that healthy,I do eat a lot of sugar,mainly in the evenings as it makes me feel better but going gluten free keeps being suggested but I don't believe I'm gluten sensitive or intolerant and the cost of going gluten free would be quite prohibitive as we have a very limited budget. As far as exercise is concerned,I joined the gym but read on quite a few websites that "normal" exercise can actually damage your thyroid further as if you do not have enough fuel in your body to do exercise it triggers your adrenals to work and this just worsens your thyroid function. The truth is I have very little appetite and only eat when I'm very hungry, which is not very often and I don't get out of bed until the afternoon most days so am having breakfast at lunchtime and then only an evening meal after that and usually lots of cake but not always. I think the chances o me getting prescribed T3 are slim to nil. If I wasn't so depressed, life would be so much easier.
I have a little piece of dark chocolate, feels like a treat and much better for you than milk and its difficult to eat too much due to the cocoa hit. It also has magnesium which is good for you. But generally I don't have sugar in the house and avoid processed foods.
Yes , be careful with the gym especially strength exercises, only do what you are comfortable with and if you not well balanced that might not be very much. It can also be demotivating to be paying that money and not using it. Fast walking every day could be quite effective. Helps breathing, metabolism, serotonin levels etc and its free.
I am the middle of a gluten free trial, I generally feel very good but I dont think its the gluten but a small rise in levo and lots of vitamin D. I feel lighter in the stomach for sure but it can take a while to build up to GF cooking - its not easy change if you have others to cook for. I wouldn't necessarily start here but recommend all to try it at some point. I started by lowering carbs bread pasta etc and changing my diet , then GF was just a few steps away. What I like is it forces you to shop better as most the crap in supermarkets has gluten in it. I avoid the gluten free aisle except for bagels.
During April lockdown I got chronic insomnia problems, thyroid induced sleep apnea, (had it once before before I started levo). I downloaded a £2 app that records your sleep at night, that was quite useful though it mainly just motivated me to do something.
Insomnia brought my life to halt and was crawling back into bed by 11AM, I could not function as a human being. Turns out I was on too much levo, I took a week off then built back up to a lower dose. I then ended up with myopathy (muscle weakness) from too little Levo and could barely move for the ball at tennis. So I upped levo a little and started a lot more vitamin D. Suddenly i found a sweet spot and am feel like superman again.
ever tried st johns wort , very good short term natural anti depressant available in Holland and Barret. Above all though keep trying there should be a optimum balance for you out there to find. good luck,
Dose has been increased from 75mcg to 100mcg, but I know that's not high enough as was struggling with depression on 150mcg so will just have to stay ill until they decide to increase further or add T3.
They decreased the dose because initially said I was "over-replaced" because TSH was below bottom of range and T4 was above top of range but they've NEVER tested my T3 until February 2020 despite being diagnosed way back in 2002, so without knowing where my T3 was they've done the wrong thing over and over again and relied on TSH and T4 levels only. Honestly, I despair and let's be honest, no doctor wants a patient telling them how to do their job but that's the way it is and they're going to have to like it or lump it.
I'm afraid your experience is pretty common unfortunately. You need to check your results and take control. Doctors often seem clueless where thyroid issues are concerned.
I am going through similar experience as sobs1962, may be I dont even need to see neurologist. It could be my thyroid. If I post my thyroid results can anyone help to see whats going wrong? I am not sure whats happening. Or any recommendations.
Would be most grateful to pointed in the right direction.
My thyroid is fluctuating alot and feel a cognitive decline and planning to see a neurologist. Anyone who can recommend any neurologist in London and surrounding areas? Or any other ways to go around it during this lockdown period? Perhaps online consultation. Also the waiting time might be too long!
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