DH has autoimmune thyroiditis and has been under investigation for possible Hashimoto’s encephalopathy as his long term memory loss equates to amnesia. It seems to flare up after infections like food poisoning or cold viruses and he gets reduced mental processing and a host of hypothyroid-type symptoms. He doesn’t fit or have ataxia but he does get auditory hallucinations, or rather his processing of sound becomes very distorted. Ingestion of gluten also causes flares although he’s not coeliac.
So far all neurological results are normal so they’re leaning back towards it being thyroid related. Flares can last months but always follow one of the triggers above.
He’s currently titrating up a trial of LDN and we’re seeing the endo next week to discuss possible T3 trial. He’s quite bouncy at 8am but between 4 and 7pm, energy progressively drains from him and his processing slows and he gets grouchy and exhausted. He just can’t think straight when this happens.
He is in full time work but had to give up his previous career due to the memory issues.
His vitamin and mineral levels are well balanced now with supplementation. His TSH is not optimal at 2 and his target is below 1 but waiting for LDN titration or T3 before adjusting dose again. His last bloods showed middle rather than upper range T4 and low free T3.
Has anyone else with autoimmune thyroiditis suffered this level of memory loss? The endo is worried that is too severe to be attributable to the thyroid issue but neurology can’t find anything to date.
Would be really interested in hearing from anyone who scores or has scored with mild cognitive impairment in a flare-up.
Thanks 😊
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Zmalp
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I’m so sorry to hear of those worrying troubles . Cognitive issues are very common in thyroid issues, showing as brain fog, confusion, forgetfulness, lack of mental clarity, etc and all risk advancing if the cause isn’t addressed.
The HPA axis (hypothalamus-pituitary-thyroid) directly mediates or is mediated by thyroid hormones (amongst other), and T3 is a neurotransmitter that has more receptors in the brain than anywhere else in the body. Insufficient T3 levels can result in neurotransmitter abnormalities and neurological change.
However, my favourite book that helped me understand my head issues was ‘Why Isn't My Brain Working?’ by Datis Karrazian, who offers explanation on the gut-brain connection and how inflammatory overload can result in brain chemical imbalances and decline. My copy is so well read, it is now held together with sellotape and one of the few books I have never lent out.
He claims similar to leaky gut where food proteins cross the intestinal lining, the same can happen to the blood-brain-barrier which allows antigens in, instigating a similar unwanted immune response. A direct gut-brain connection has been evidenced by research showing G.I. immune cells (enteric glial) triggering the brains astroglial immune cells, and why some members claim eating gluten gives them brain fog.
A small amount of inflammation is healthy to heal ourselves and control infection but the systemic inflammation induced by autoimmune issues can be very destructive. Many with thyroid autoimmune disease also experience reactivity in other tissues such as in rheumatoid arthritis but Datis Kharrizain says TPOAb can also attack the brains cerebellum that coordinates muscle smoothness and helps with balance and stability. This triggers autoimmunity in the brain and symptoms such as instability and vertigo, sound and light sensitivity and anxiety.
The day after I starting medicating T3 my years of brain fog miraculously cleared like a light being switched on but it took another 7 years to get where I am today, and through the extremes of highs and lows, anxieties, head whooshes involving feelings of effervescent bubbles going off . Today my head feels calm and full of knowledge, and I know who I am but I still have OCD tendencies.
As well as restoring T3 levels, I was given additional supports such as 5 -HTP to help the brains serotonin system, adaptogens for the adrenals. LDN can be very helpful in addressing the chronic inflammation (elevated thyroid antibodies) but I adopted a g/f diet and took natural anti -inflammatories such as fish oils and curcumin that help both gut and brain inflammation.
What a brilliant response radd! You have just filled in a missing piece for me about balance, whooshes and vertigo issues! I have RA, Hashi and hypothryoid and many times my feet don't go where they should, plus I have memory issues. Since I have back damage, we thought the spinal column was involved, but an MRI showed no intrusion. I thought I was nuts, but you've given me a major clue! Thank you so very much! I am hoping to be on T3 soon (my endo appt is in a month.)
Thank you so much. I’ve seen that book mentioned elsewhere and wondered if it would be worth getting so I will order it now.
We are hoping the LDN will help reduce the over-reaction to cold viruses etc. He was only diagnosed with thyroiditis formally last November after years of misdiagnosis and one major diagnostic error where the hospital concerned misreported and missed clearly positive indicators in blood tests that he has thyroiditis. That caused a long delay in discovering the real issue, then inordinate NHS waiting times before formal diagnosis and then we gave up and got a private endo and neuro. We’ve done lots of balancing with vitamin and mineral levels as he’s been titrated up levothyroxine doses. I was told it can take a while and he was doing really well until he got food poisoning badly and got very ill again after it.
The symptoms you describe here around autoimmunity in the brain sound exactly like what he experiences in a flare. When we saw the endo last, he was happy to try T3 if we didn’t get great results on levothyroxine alone but he wanted the neurologist involved first to rule out other issues.
It’s going to be a long haul to get everything optimised. I really appreciate you taking time to respond. I’ve had more help here in getting him diagnosed, treated and in a better place than from anywhere else. It’s such a poorly understood condition. His GP (when we can actually get an appointment) is lovely and very supportive but doesn’t understand it at all and battling against waiting lists for consultants. What I have learned is you have to research it yourself and thank goodness this community exists.
Conventional medicine will not recognise the extent of thyroid autoimmune damage except to the thyroid gland. They try to suppress RA, etc with steroids as it noticeably cripples people but until they understand the gut-brain connection, they don't believe head/memory issues can arise from thyroid antibody induced inflammation.
If LDN works it will also help reduce thyroid antibodies and chronic inflammation. Unfortunately it doesn't work for all but shows pretty quickly which direction it is going. This chronic inflammation induced by thyroid autoimmune antibodies also affects hormones.
We tend to consider the common adrenal issues are a consequence of years of inadequate thyroid hormone but there are many articles linking sex hormones imbalances to being inflammation driven (progesterone, oestriol and testosterone are immune suppressive. estrone and estradiol are immune stimulating).
There is another inflammatory hormone called etiocholanolone that is made from DHEA and drives the same response as Hashi (IL-17) resulting from imbalanced TH-1 & TH- 2 cytokines. Low DHEA is now being thought of as a result of chronic autoimmune inflammation, that reverses after supplementing LDN. This evidences yet another huge connection between autoimmunity and hormonal imbalances, eg quell the immune response and everything starts righting itself but be aware it can take many months/years.
I can’t find the research paper to link but assume it must be referenced somewhere within here …. lowdosenaltrexone.org/index...
You have to be a shining endorsement for this book, your memory and depth of understanding had me thinking you must be an advanced AI Bot 🤭 turns out you are a fully powered up hormone replaced marvel 🤗
Haha , thank you E. My OCD tendencies mean I have to know everything to give me some sort of control.
With OCD it’s about looking upon it as a strength by channelling it to positive use and using it to conquer as opposed to allowing it to conquer oneself.
I can still get pretty wrapped up and driven more than is usual 😁, but T3 calmed me enough to now make rational decisions enabling me to choose where to apply my energies.
You perhaps don't realise how powerful your hard earned little snippets of wisdom are.... when my brain is in a fug the thought of reading a book about it is the last thing I want to do and then you drop in a well constructed brain bomb that gives me a kick in the right place 😅
Even when brain foggy I used to read and insert sticky notes everywhere to remind me of where info was, but then I forgot what info was there and what I was even looking for 🤣.
I also used to do online memory courses and fail dismally but the trying kept me buoyant.
I used to read the same page over and over again as I'd always lost the gist of it by the time I'd reached the bottom 😕 since the addition of T3 things are now starting to stick at least a little longer... I've only just completed my first year of recovery so lets hope the upward curve continues 😊
music starts playing.... 🎵 pan out to a mountain vista.... 'climb every mountain' 🌄🐐
Radd what a difference T3 makes. It helps me with my heart palpitations . Yet Dr's that I have been to even Cardiologist never made the connections. This is so tragic. But they did suggested ablation. Is that not a shame. I wonder how many more people are suffering that can be helped by just a little dose of T3.
I've had terrible memory and concentration issues that affected my job too. My blood results showed bad conversion of from T4 to T3. I have recently started taking a combination therapy and I must say I feel far more alert and memory seems better. But still early days. Before being diagnosed as being hypothryroid, I thought I was suffering from Alzheimers and felt very isolated. My hearing and eyesight were badly impaired and have improved since.
Thank you. He’s been investigated for dementia as the memory loss is so bad and also CJD but both ruled out but it’s awfully scary, isn’t it? His hearing has been affected and the tinnitus gets worse when his blood aren’t optimum or after infection. I’m hoping T3 may be part of the solution for him too 😊
I developed memory issues & eventually serious cognitive issues but it was mainly B12 deficiency , only slightly thyroid. This despite taking high dose sublingual B12, which raised levels but did absolutely nothing for symptoms.
It's also known on the pernicious anemia (PA) forum healthunlocked.com/pasoc that illness, antibiotics, and stress tend to stress or deplete B12 levels, leaving us feeling deficient even when we inject frequently.
I know symptoms overlap with thyroid but worth checking if he has other issues like gait/balance problems, shoulder bumps (hitting corners/walls), dropping things, pins n needles or bugs crawling sensation, vision issues, as well as tinnitus, hallucinations, any many more listed here: b12deficiency.info/signs-an...
A functional deficiency can potentially be diagnosed with homocysteine & MMA tests, as well as intrinsic factor and gastric parietal cell antibodies. However these may still all come back 'normal' especially if supplementing. Red blood cells are also often normal, i.e. there's no anemia but the brain & nerves are affected.
In that case, a trial of injections may be given, and deficiency evaluated/diagnosed based on the clinical response. British committee for standards in haematology guideline/ stichtingb12tekort.nl/engli...
Some neurologists will know all this, but many don't. There are new NICE guidelines being proposed which will hopefully make it easier to get diagnosis & treatment for b12 deficiency.
Oh wow… thanks for sharing this, have just walloped my arm going out of the kitchen door. Am on constant drop alert. Just thought I was clumsy and my thumbs don’t work properly from RSI, tendinitis. Felt very crawly in bed last night legs a bit jumpy. I’d dropped the B Complex down to 2 a week as I was at 844 (197-771) hmm separate B12 daily or up the complex?
Or... stop it completely for a few months and get tested for pernicious anemia?
Are you vegeterian/vegan? If so do you eat any food fortified with b12? Daily B12 requirements are only about 4 mcg per day. I know our low stomach acid from being hypo means we may need more b12, but i'm always suspicious when someone needs to be taking massive doses.
Do you still get symptoms on higher doses of B complex or sublingual B12? That worked for me & my 2 relatives for a while but we all ended up on injections.
In fact I had the shoulder bumps, dropping things, and feet burning for years while on sublingual b12 (levels would go nicely up to the 800-900s). At the time I didn't realize it was a symptom. Then I got the bugs crawling in my hair sensation at night - went to both GP & hairdresser asking them to check me for lice 😂 My severe crash - total numbness in arms, burning all over, only came a few years after that.
Luckily my relatives only developed symptoms after i started injections, so we caught them earlier. It was when they had to start taking 2 to 3 high dose b12 tablets per day they finally agreed that yes, it was malabsorption probably due to PA. Their levels also went up on tablets so they were of course highly sceptical. The other day one said getting injections made her feel like 'dancing on the clouds'.
You're welcome 🥰 You may want to browse through the PA forum's pinned post for more reading and some videos about PA and B12D, a great accompaniment to gardening I hear 😁😂 . healthunlocked.com/pasoc/po...
He’s always shown very good levels of B12 because that was the first thing they suspected but over 2 years of testing, he’s never had levels below the middle of recommended range, though he has been folate deficient. The psychologist thought it was like a B12 memory loss but they weren’t look for thyroid issues then due to the hospital mis-reporting. Any of the B12 deficiency symptoms he has are also hypothyroid symptoms too.
He’s been in a specialist neurology hospital recently for a week being tested (though they didn’t do all of the ones needed yet) and they did say they’d checked levels again. They were trying to rule encephalopathy im or out so were testing for a lot.
If he’s got good levels in blood, I don’t know how he could be deficient? Am I missing something? Sorry if I’ve misunderstood something obvious 😊
Hi Zmalp, yes, he can still be functionally deficient. That is, supplements raise blood levels, but cannot get into the cells. Not much is known about it, unfortunately. It may be an issue with the B12 transporter Transcobalamin II, or something else entirely. Too little research as yet on this.
You may want to review the British Committee for Standards in Haematology Guideline - this is a flowchart - see the right side. stichtingb12tekort.nl/engli... A clinical response to injections is also considered diagnostic. Though most doctors would not know/agree with this.
You might have more luck of a diagnosis asking for the following tests: MMA, homocysteine, instrinsic factor antibodies, gastric partietal cell antibodies.
However, these tests are not fallible. There is currently NO gold standard diagnostic test for B12 deficiency.
MMA and Hcy are often raised in functional deficiency, even when serum and active B12 levels are fine. But not always!! My MMA and Hcy were fine, both antibodies negative.
Antibodies can also be negative in up to 50% of the people who truly have pernicious anemia (PA). And there are cases of functional B12 deficiency where the cause is never found.
I and my 2 relatives are a perfect example of this. Two of us have negative antibodies, only 1 has positive antibodies. Tablets raise our levels. Mine were in the 800-900s on 1000 mcg sublingual B12. Yet I developed total numbness in my arms from elbow to fingertips, burning all over my body, severe cognitive deficits, memory issues, balance problems, vision problems (large scotomas blinding my vision, blind spot), and lots of other issues. All gone with daily injections.
B12 injections are proven safe and non-toxic even at high doses. stichtingb12tekort.nl/engli... It is also very cheap - one B12 ampoule costs less about 1 pound.
Especially if the psychologist thought it was B12 related, it would be very easy for them to do a trial of injections - say, every-other-day for 3 months. You can do them at home too. Many of us on the PA forum self-inject because doctors dismiss us.
If he has been supplementing folate, but is (functionally) b12 deficient, this is known to worsen B12 deficiency symptoms, possibly causing irreversible nerve damage. Supplementing folate can reverse/normalize the hematological signs (eg MCV, MCHC), as well as homocysteine, but does nothing for symptoms, and in fact accelerates the damage.
A neurologist knowledgable about B12 should know this - it's been known for decades and there are many papers on it. From the paper below "It is well known that folate therapy may mask anemia, and not treating with cobalamin may accelerate neurologic damage in people with vitamin B12 deficiency.49"
The paper The Many Faces of Cobalamin (Vitamin B12) Deficiency has some great info about a lot of this ncbi.nlm.nih.gov/pmc/articl...
Sorry for the info dump! Doctors think B12 is so simple... yet it's not! Hope this helps some. Please ask again if you have more questions, or join on us on the PA forum healthunlocked.com/pasoc
Zmalp, I just noticed point 5 in the letter writing template page has a long discussion on functional B12 deficiency - you may want to review that first. It's even mentioned on the NHS pages!! nhs.uk/conditions/vitamin-b...
Functional vitamin B12 deficiency
Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.
This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells.
This results in neurological complications involving the spinal cord.
He is dropping things and a bit clumsy. The neurologist did think he saw some unusual reflexes at times when they examined him but then he started to come out of the flare, although they still increase with fatigue.
The endo thinks there’s something nobody has identified yet that’s co-existing with the thyroiditis but the neurologist is somewhat baffled and now waiting for neuropsychological memory testing to try to identify specifically which parts of the brain are being problematic. The waiting list is months! Been on it three already. They couldn’t do it in hospital as he was in too much pain after the spinal fluid sample was taken.
His endo will probably be happy to arrange additional diagnostic testing via our GP 👍
Thanks again! Learning some new stuff now so I can talk to his consultant next week
I owe you a HUGE thank you. After a lot of delays with appointments and GPs being extremely unhelpful, and some really depressing and frightening results on his neuropsychological test, I gave up battling with the NHS and found a clinic to trial injections. He’s now self-injecting and is getting better all the time. All physical symptoms either gone or improving. He says his brain is working again and his memory is returning which is an incredible improvement. I’m still in shock!
Endo was fab. Says he can see such a big difference in health he wants to try optimising free T3 levels now to see if that resolves the rest
Wasn’t dismissive of B12 possibilities, just thinks there is progress and the neuropsychological assessments will pick it up soon if it is B12 issue so wants to see how much T3 improves things first
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