Memory Loss: Hi, My memory is shocking and I’m... - Thyroid UK

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Memory Loss

Welly73
Welly73

Hi,

My memory is shocking and I’m starting to worry. It’s been a gradual thing over the last 3 years. I laughed it off at first and blamed it on the menopause (I’m not even in the menopause) then I though it could be stress but it’s getting worse.

Could it be related to UAT? I read a deficiency in B12 could be the cause. How do I know what the range levels should be? I’m on 75mg levothyroxin.

Has anyone else suffered the same and did you manage to resolve it?

57 Replies
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You will see folks on here referring to brain fog. That is what you are describing. Can't think straight, forget words, forget what you were on about mid sentence, can't concentrate

Do you have recent blood test results to share. It could be you need a levo increase. Or it could be B12 or other vitamins so be good to check those levels too.

Welly73
Welly73 in reply to Lalatoot

I’ve just added a copy of my last bloods to my post. Since increasing my dose we went into lockdown so the drs aren’t seeing anyone unless it’s urgent.

Lalatoot
Lalatoot in reply to Welly73

The tsh is too high for someone on levo. It should be 1 or lower. The ft4 result is not near the top of its range. I think you need and Increase of 25mcg levo to begin with.

Welly73
Welly73 in reply to Lalatoot

Since these bloods were taken the dr has increased my dose by 25mg.

I’m due another blood test but due to covid they arnt doing them.

trisport
trisport in reply to Welly73

I've started using a private blood test company called Thriva. My docs weren't doing any blood tests during lock down so gave them a try. I was really impressed with the service and was worth every penny to get that underactive thyroid diagnosis. Sent the readings to my docs and they put me on medication! (I'm not associated with Thriva in any shape of form, was just really pleased to get a great service!).

SeasideSusie
SeasideSusieAdministrator

Welly73

How do I know what the range levels should be?

Ask for a print out of your results from the receptionist at your surgery. The reference ranges will be on there alongside the result.

Ranges vary from lab to lab so no-one can tell you what your ranges are.

Memory loss and confusion is listed under Non-Physical signs and symptoms on the list that you can see on ThyroidUK's main website here:

thyroiduk.org/signs-symptom...

Welly73
Welly73 in reply to SeasideSusie

I was reading through that list going yes, yes, yes, yes!

I've been like this. I started to catch myself doing things my partner's grandmother (with dementia) had been doing in her early days with the illness, and it was scary facing going to the doctor to raise the subject. I simply had a B12 deficiency, and the B12 supplements made a difference quite quickly.

It's up to you whether you test, I technically don't think there's any harm supplementing B12 on the off-chance it'll make a difference.

Other symptoms are tingling/numb toes, mouth ulcers, clumsiness.

Welly73
Welly73 in reply to Cooper27

My grandma had dementia too and It has made me worry but I think it’s more likely to be a symptom of UAT. As soon as the drs will see non-urgent cases I’ll be booking in for my bloods re doing.

Are there any side effects to taking B12?

Cooper27
Cooper27 in reply to Welly73

None that I'm aware of, it's one of those supplements that's near impossible to overdose on. The only issue with it is that is can artificially inflate your blood levels if you do test, so you need to stop taking for a few weeks before a blood test. If you do manage to get a test soon, hold off on supplements until you're tested, if it will be a while until your tested, then you have nothing to lose. I take Cytoplan sublingual B12, it's not too expensive. Make sure you buy from a good brand (not holland and Barret's, but Cytoplan, solgar, BetterYou mouth spray)

thyr01d
thyr01d in reply to Welly73

we do need to be careful with vitamin B 12. B vitamins need to be in the correct proportions, if you take too much B12 you are likely to deplete other important B vitamins and develop other symptoms.

SlowDragon
SlowDragonAdministrator

Time for new tests

Are you still only on 75mcg levothyroxine?

Which brand of levothyroxine do you have

Do you always get same brand of levothyroxine?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had thyroid antibodies tested

Can see you have low vitamins and now supplementing

Ask GP to Retest vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Welly73
Welly73 in reply to SlowDragon

My last test was taken in the afternoon but now I know this top tip I will make sure I do it that way in future.

I was on 50mg and increased to 75g.

I’m not overly sure on the brand but will check first thing in the morning.

I haven’t been taking any supplements as I was worried to do so incase there were any side effects to taking them. I bought b complex should I start taking them do you think?

Marymary7
Marymary7 in reply to Welly73

If you take b complex now and need a thyroid test the Biotin in it will effect the lab test, need to leave off for one week. If you want to know your b 12 levels any supplements will make it look falsely high.

Good luck.

shaws
shawsAdministrator in reply to Marymary7

If you have a low B12, you should ask for an 'intrinsic factor' blood test to diagnose if you have Pernicious Anaemia - a common autoimmune condition. I have P.A. and the P.A. forum will advise/help you. Don't supplement with B12 until you get the proper blood test.

Many on this forum have more than one autoimmune condition.

labtestsonline.org/tests/in...

SlowDragon
SlowDragonAdministrator in reply to Welly73

Get tested first

request vitamin D, folate, ferritin and B12 are tested...alongside TSH, Ft4 and Ft3

Plus both TPo and TG thyroid antibodies, if these haven’t been tested yet

Test privately if GP only tests TSH

Welly73
Welly73 in reply to SlowDragon

Where would I get these blood tested privately?

SlowDragon
SlowDragonAdministrator in reply to Welly73

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Marz
Marz in reply to Welly73

If you read through your last post of 5 months ago SeasideSusie explained the supplements you would benefit from based on your results. I would be starting them as soon as you can.

Click onto your username to find your previous post 🌻

SlowDragon
SlowDragonAdministrator in reply to Welly73

If the 75mcg is single tablet it will be Teva

Teva brand upsets many people

Strongly recommend getting FULL thyroid and vitamin testing privately...assuming GP only tests TSH and Ft4

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

List of private testing options

thyroiduk.org/getting-a-dia...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Welly73
Welly73 in reply to SlowDragon

Hi my brand at the moment is MercuryPharma. I take 3 x 25mg daily.

I have posted a clearer picture of my results.

The results were:

Serum vit B12 397pm/mL (191.0 - 663.0)

Folate 2.8 mg/mL (2.4 - 26.8)

Vit D 55.7 nm/L

SlowDragon
SlowDragonAdministrator in reply to Welly73

All vitamins far too low ...which also suggests you are likely under medicated and levothyroxine dose was too small

B12 Minimum of 500

Folate at least over ten

Vitamin D at least around 80nmol and around 100nmol maybe better

Vitamin D

Recommend getting Better You vitamin D mouth spray. Easy to use and well absorbed

GP will often only prescribe vitamin D to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need,

Calculator for working out what dose you may need

grassrootshealth.net/projec...

Government recommends everyone supplement October to April as absolute minimum

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

SlowDragon
SlowDragonAdministrator in reply to Welly73

Low folate and low B12

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. This also contains B12

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

If you have Low B12 symptoms you may need addition of extra b12

b12deficiency.info/signs-an...

Welly73
Welly73 in reply to SlowDragon

Thank you so much. I’m going to call my gp on Monday morning g to get new bloods done if possible. I think it’s a good starting point. If they refuse due to the lockdown restrictions do you think I’ll be best getting them done privately?

Since these results gp increased Levo by 25mg. So I’m not sure what my vitamin levels are now.

SlowDragon
SlowDragonAdministrator in reply to Welly73

Bloods should be retested 6-8 weeks after this dose increase

How long exactly have you been on higher dose?

Welly73
Welly73 in reply to SlowDragon

Since the beginning of march.

But then the pandemic hit so not been able to go to the Drs.

SlowDragon
SlowDragonAdministrator

Very important when you test - always get tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Agree with the b12 deficiency. I use betteryou vits. I suggest you do the same, They come in a liquid form, you spray, hence they’re easily absorbed and very good quality too.

You are also vit D deficient according to your results! That will also cause you big probs . I take both.

Betteryou vits are in holland & Barrett’s or you can sometimes get good deals on line. Good luck with that. Am sure you’ll soon notice a difference 👍

I can see from the photo of your (latest?) results that your TSH is not well suppressed.... and there is no result for T3*. The B12 result is a blur on my screen, but your folate and Vitamin D are both too low, barely scraping into the Normal ranges.

Note on supplements - the 'side effects' of taking a quality B complex are negligible compared to the really damaging effects of a deficiency. Vitamin D deficiency is very serious as it compromises immunity, mental health and our other (not just thyroid) hormones. To avoid side effects of too much vitamin D - it's a Calcium magnet - is to take Magnesium and Vitamin K2. The Magnesium helps vitamin D to work and fights inflammation and the K2 pulls any extra Calcium into the bones where it's needed and away from soft tissue and arteries. It's a trusted combination.

forthwithlife.co.uk/blog/wh...

In order to have optimal vitamin D (you do with Hypothyroidism) results should be >75 nmol/l. See above link. Labs often use another scale which is in nanograms per ml (ng/ml)measurements, so be careful that you don't confuse them...

*I think I initially misread your T4 result... is that a 19, 18 or a 15? Well, it's only low - mid range, so you'd certainly benefit from a dose increase with that TSH over 3 and hypo symptoms. Your doctor needs to address this.

Welly73
Welly73 in reply to HLAB35

Since these tests my dr has increased my dose by 25mg. I feel much better since but the memory thing is majorly noticeable by everyone now.

I’ll double check my results tomorrow and let you know.

SlowDragon
SlowDragonAdministrator in reply to Welly73

So you should test thyroid levels 6-8 weeks after each dose increase

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What are the vitamin D, folate and B12 results....too blurry to read?

HLAB35
HLAB35 in reply to Welly73

I agree with Slow Dragon that you should really have been tested after the increase (these results are quite old). Obviously, during full lockdown many of us put things like blood tests off, but I'd be getting on with it now, before the colder months kick in which is always harder for many of us.

I noticed in your posts five months ago, a lovely and very comprehensive reply from Seaside Susie about getting your vitamin levels sorted.

Now your t3 and antibody levels were never given, so, for all anyone knows you could be a poor converter. I would ask for t3 to be tested. Low t3 effects the brain. Having low vitamins or minerals is often the cause of poor conversion, also high antibodies.

If you chose to put off supplementing due to concern over side effects, or decided to go along with the GP and take 400 units of Vitamin D, and folic acid (rather than proper methylfolate which is much easier to absorb) then you won't see much improvement. I know the 'better' supplements may seem a bit of a stretch, but nutrition is really not part of a medic's training and there's a lot of experience on this forum about what's actually working.

HLAB35
HLAB35 in reply to Welly73

Here's some evidence showing Free T3 to be low in Alzheimers. In the study, the TSH and T4 was the same as those without Alzheimers, but T3 was much lower. This is shocking, because clinicians don't always routinely test for T3, even in those on Levothyroxine. My mother-in-law ended up with dementia after years of needless suffering with hypothyroidism.

ncbi.nlm.nih.gov/pmc/articl...

Please ask to get Free T3 tested as well as antibodies.

Welly73
Welly73 in reply to HLAB35

Thank you I will. And even oaf the go refusals I will get a test privately.

I had same around the time of menopause. Then as I got further away from the menopause my memory seemed to recover. I’m on 125 Levo. Hope you can relax and don't worry too much. I felt at that time too, I had so much to deal with it can be overwhelming.

Hi welly 73 i am having the same problem until recently i was on 75mg 100mg of levothyroxine on alternating days then it was decided by my gp that i should take 75mg and 50mg alternating days . Went to see my endo and he put the doses up to original dose and my b12 is awful. They also found a deficency in my vit d. But would not give me a loading dose as the gp told me i would have to buy it myself. Just awaiting new blood test to see how they are . Hope you feel better soon

HLAB35
HLAB35 in reply to VLJones

Your GP sounds pretty cavalier going against your Endo's recommendations and lowering your dose. I'd be tempted to switch if there's someone else at your surgery. You could try posting your b12 results on the PA forum for advice.

VLJones
VLJones in reply to HLAB35

Yes she's a nightmare going to change GP soon as moving

Welly73
Welly73 in reply to VLJones

Have you started any supplements?

VLJones
VLJones in reply to Welly73

Not started any supplements yet. Awaiting blood test results

Hi I feel your pain as I suffer from the same. I have spoken to the doctors but they just laugh it off. I have lost a lot of confidence especially my work life as sometimes I can’t string a sentence together. So I would also be interested to see what everyone says !

Welly73
Welly73 in reply to SmilerG

I feel like I will be dismissed by the gp! But it really is a scary situation to be in when you just can’t find words in sentences.

It’s a kind of relief to read others experience with symptoms that you suffer yourself. My husband has even commented on my inability to remember particular words to complete a sentence! It’s embarrassing when you just cannot remember which word you need to explain something. I’m hoping that when my recent full bloods are back, it will show a deficiency and that by supplementing my memory and muscle/joint aches and pains will increase/decrease respectively. I see that VLJones has at least got a supportive endo that has increased his/her Levo.

HLAB35
HLAB35 in reply to Kimkat

The B vitamins that have helped me with cognitive function are methylated b12, folate and coenzymated b6 which is called p5p. B5 is good for stress. Also, minerals like zinc and magnesium are good for cognitive as well as anxiety prevention (as magnesium acts as a buffer to cortisol spikes) and an iron rich diet for fatigue.

VLJones
VLJones in reply to Kimkat

Yes my Endo is lovely he sent the GP a very hard hitting letter and he sent me a copy . It basically said do not mess around with this ladies meds!!

Kimkat
Kimkat in reply to VLJones

That’s fantastic, my endo doesn’t even know what dose of Levo I’m on. I wanted an increase of 25mcg which would take me to 50mcg and he refused for the moment. Then sent me a letter saying that he would like me to have bloods done in August before our September phone appt and to stay in the 50mcg that I am currently taking!!! He obviously cannot be bothered to read my notes, I’ve got no chance 😟 where do you live? Are you in the northwest by any chance?

VLJones
VLJones in reply to Kimkat

Yes my endo is at RLH in Liverpool

Kimkat
Kimkat in reply to VLJones

What is his name I may get in touch with him

VLJones
VLJones in reply to Kimkat

Doctor Sharma and his team they are all brillant

Kimkat
Kimkat in reply to VLJones

Thanks very much.

shaws
shawsAdministrator in reply to Kimkat

I'd get your Free T4 and Free T3 tested (rarely done by GP). Free T4 is an inactive hormone and converts to T3. Free T3 is the Active thyroid hormone and we have millions of T3 receptor cells that enables our body to function, especially heart and brain have the most T3 receptor cells.

urmc.rochester.edu/encyclop...

I had started to have memory problems that resolved with B12 injections but emerge again if I stop having the jabs. My mother had this too and also had Osteoporosis and Hypothyroidism. My theory is that B12 absorption is thwarted if the sufferer has metabolic disorders. Stands to reason really! I'm also vegetarian so need to get B12 some way other than in food. I'm currently trying a liquid form that is Vegan friendly and is supposed to be easier for the body to absorb and utilise. I have a hunch that B12 absorption deficiency might be implicated in Dementia.

Hi, sorry to hear your having memory problems.

I too experienced similar problems when taking Levothyroxine.

I have taken many supplements but the memory problem still remained.

I drink a fair amount of water each day, at least a litre but my moring urine still says I'm dehydrated.

When i increase my water intake my brain fog is not as bad.

Try drinking more plain old fashioned water. As a first step its not going to break the bank and might be that all to obvious essential we overlooked.

Welly73
Welly73 in reply to Angelic69

I will certainly give it a go.

My sister had terrible memory lapses. Turned out she had Pernicious Anaemia. She thought she had dementia (only 51). But being diagnosed and now having injections of B12 makes a HUGE difference.

My folate, B12 and vitD all drop low if I don’t supplement practically all the time.

The advice above is the best. Seaside Susie, Slow Dragon and others should not be ignored.

I would get new tests done before any supplementing.

Then repost on here, and get great advice.

You can have the supplements ready to start after the test results.

Folate, B12 and vitD being low will make you feel extra fatigued too, so hopefully you will see an improvement within a few weeks.

Although my memory has improved, I still write notes in a book. I find writing it down helps me to forget less. Sometimes I might have to read something several times for it to sink in. Don’t give up, keep reading, keep learning, and gradually you’ll feel more like your old self again.

Hi Welly73 sounds as if you need your bloods done to get your levels and take docs advice..

I have terrible Memory issues

I’m actually going to see a specialist in August to discuss it all It is really impacting on my life

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