brain fog.....help needed: Hi all, I'm not really... - Thyroid UK

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brain fog.....help needed

Ms_Vonnie profile image
15 Replies

Hi all, I'm not really a newbie, but mostly just read comments until now.

I was diagnosed with underactive thyroid nearly 3 & half years ago. I'm on 75mcg levothyroxine, in my 50s & was symptom free until about 1yrs ago, which started out with reduces energy levels.

In the last 6mths, I am slowly becoming confused, brain dead, unmotivated, indecisive, unable to digest new information & irritable to name but a few symptoms.

Can anyone advise which medication are safe to take for brain fog?

Recent blood test didn't reveal anything:

TSH 2.46 (0.4 - 5.5)

Free T4 15.6 (10.3 -24.5)

B12 835 (197-771)

Folate 6.1 (4.6-18.7)

Ferritin 176.9 (13.0-150.0)

Calcium 2.44 (2.15-2.50)

Internally I don't recognise myself anymore and I feel like I'm in someone else body. Currently I'm unable to work because of stressed, which I know doesn't heIp my situation.

Any advice would be appreciated.

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Ms_Vonnie
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15 Replies
Jaykanes profile image
Jaykanes

Its the same for me I forget names get angry feel serial a lot I'm not me anymore don't want to be anywhere I'm exercising against my will its helping and the next day feels better plus iv switched taking my meds to the night that's helped hope you start to feel better soon

Ms_Vonnie profile image
Ms_Vonnie in reply toJaykanes

Thanks for replying. What is the % that you feel better, because of switching taking your meds at night?

TupennyRush profile image
TupennyRush

Can't comment on the vits - Grey Goose or Clutter are better on that but your tsh looks high so you may be under dosed.

Have you tested for the Dio2 gene snp? I had bad brain fog on levo, tested for the snp, came back positive and feel 200 per cent better on ndt.

If you test (privately) this may be the way to onwards t3 supplements to your levo. but, suggest you see if you can get dose higher on levo as you tsh should be less than 1 first

Ms_Vonnie profile image
Ms_Vonnie in reply toTupennyRush

Hi, thanks for replying. What is Dio2 and snp? My GP didn't test T3.

Jaykanes profile image
Jaykanes

It only day 4 with the switch but I'm waking up a bit easier and my stomach is more settled I'm a Yorkshire man I couldn't wait for hours for a cuppa tea bout 20% I'd say

Ms_Vonnie profile image
Ms_Vonnie in reply toJaykanes

Hi Jaykanes, in response to my post I was wondering why you stated your exercising against your will?

Just had a session with GP today, as I need help badly and was told to exercise as it will help with my mood.

I wanted to be re-referred to endo specialist but was refused and GP stated it wouldn't help. I am just lost for words at the this point in time and feel like I'm drowning.

Jaykanes profile image
Jaykanes in reply toMs_Vonnie

Iv always hit the gym since I was 20 and worked in scrap yards heavy lifting but a year ago I got a easier job and I went down hill quick my docter said my thyroid was so low I must of had it years my t4 was 1.9 my tsh was over a hundred I really believe being active made me feel better so that's my logic I'm not just gunna let it beat me

TupennyRush profile image
TupennyRush

Hi there

Dio2 snp is a gene defect that means you don't convert t4 (the main circulating hormone that levo replaces but that your body can't use) to t3 (which is the stuff your body uses). It mainly affects certain organs but particularly the brain.

If you have this gene defect you do need a medication with t3 as you will never be properly well on levo which is t4. It doesn't affect conversion everywhere just some specific organs but the brain is a pretty important one!!!!!

Giving levo only to someone with this defect is like putting diesel in a petrol car; it might work for a while but not well....

Ms_Vonnie profile image
Ms_Vonnie in reply toTupennyRush

Hi TupennyRush, did you have your Dio2 snp test done at Blue Horizon? If done privately did your GP accept the result or are you self treating?

TupennyRush profile image
TupennyRush in reply toMs_Vonnie

I got mine done at Geneva via thyroid UK website.

I went to a private endo and was prescribed ndt.

My NHS GP got me yo get the ndt signed off by a local NHS endo and my GP now writes me a private prescription for ndt. I get it filled from one of the pharmacies recommended by thyroid UK and it costs around 110 quid for 100 days supply (I'm on 1.5 grains)

Good luck

SeasideSusie profile image
SeasideSusieRemembering

Ms_Vonnie It's not a case of what medication you can take for brain fog, it's a case of getting optimally medicated where your thyroid is concerned and optimal levels of vitamins and minerals so your thyroid hormone can work properly.

For a treated hypo patient your TSH is far too high and your FT4 too low. The aim of a treated hypo patient is for the TSH to be 1 or below and the FT4 and FT3 to be in the upper part of their reference ranges or wherever is needed for you to feel well and symptoms alleviated.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

If you email louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP and discuss it.

What you really need is a full thyroid panel to include FT3 which is the active hormone, the most important one but this is rarely done on the NHS unless there appears to be something very wrong with the TSH and/or FT4 result. You could also ask for thyroid antibodies to be checked to see if you have autoimmune thyroid disease aka Hashimoto's. Ask for Thyroid Peroxidase and Thyroglobulin (probably not possible to get this done on the NHS).

Are you taking any supplements for your vitamins and minerals? Ferritin is high and may be if you are supplementing you should cut back. B12 is good, the Pernicicous Anaemia Society recommends 1000. However, your folate is too low at 6.1. It should be at least half way through range and with your range that is 12+. You can get a methylfolate supplement, or if you are already supplementing with B12 you should get a B Complex to balance all the B vitamins. A couple of good B Complex supplements are Thorne Basic B or Jarrows B Right and both contain 400mcg methylfolate which will help raise your folate leve. Another one is Doctor's Best Fully Active B Complex and that contains some B12 as well which will give your B12 level a bit of a boost if you're not already taking a B12 supplement.

I would also suggest asking for Vit D to be tested. If your GP wont do it then you can get a fingerprick blood spot test from City Assays vitamindtest.org.uk/ If that is below 100-150 then you'd need to supplement with D3, plus it's co-factors K2-MK7 and magnesium.

Ms_Vonnie profile image
Ms_Vonnie in reply toSeasideSusie

Hi SeasideSusie, thanks for your reply, which is very informative & will take some time to digest (because of brain fog).

Yes, I was supplementing with vitamins & was told by GP to stop as he wants to do another blood test in 3mths time.

My vitamin D was 82.0. I have been taking a Adcal tablet (which is a combination of calcium and vitamin d), but not religiously, as I want to replace it with something else.

SeasideSusie profile image
SeasideSusieRemembering in reply toMs_Vonnie

Ms_Vonnie What were you supplementing with and what has he told you to stop? If it's Vit D then you don't need to stop for 3 months.

And if it's B12 you need to be for that for 5 months I believe to get a baseline.

I use City Assays for my Vit D tests and they tell you you can continue with your supplements just don't take them on the morning you do the test, watch the video on the top right vitamindtest.org.uk and go to 2 minutes 30 seconds. I queried this with them and was told if you do that you'll know if the amount you're supplementing is right, too much or too little.

Before you're GP put you on Adcal did he test your calcium level? He should have done and if not was not low you shouldn't be taking calcium. If you have the caplets they contain Calcium carbonate (750 mg) and vitamin D3 (200 I.U.) so not very much D3 but plenty of calcium. If you have the chewable tablets they contain Calcium carbonate (1500 mg) and vitamin D3 (400 I.U.) so again not much D3 but plenty of calcium and they contain soya oil which is hypo people should avoid - we should avoid all types of soy unless it is fermented.

Unless you need the calcium then ditch the Adcal and get something like Doctor's Best softgels which contain only D3 and extra virgin olive oil.

And because you've been taking all that calcium it is imperative that you take K2-MK7. D3 aids absorption of calcium from food (and you've been taking all that extra calcium in Adcal) and K2 directs the calcium to bones and teeth rather than soft tissues and arteries. You also need magnesium as well.

Ms_Vonnie profile image
Ms_Vonnie in reply toSeasideSusie

SeasideSusie, my GP wanted me to stop taking any extra tablets/vitamins not prescribed, (which was vitamin c, zinc and B12) because some of my blood test results were high, which naturally got me concern.

Regarding the Adcal, I was put on that when I was under the endocrinologist.

Can too much calcium can contribute to brain fog, as I think I have read that somewhere?

Some of my results were:

Vit d = 82.0

Vit B12 = 835 (197 - 771)

Thanks for all your info, You have provided me with lots of info, that I will have to digest.

SeasideSusie profile image
SeasideSusieRemembering in reply toMs_Vonnie

You don't have to worry about your B12.

Did your endo test your calcium level before starting the Adcal?

I haven't seen anything about too much calcium causing brain fog but this blog post is worth reading to see if anything jumps out at you

drlam.com/blog/brain-fog/1962/

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