The hellish outcome of forgetting to take T3 ta... - Thyroid UK

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The hellish outcome of forgetting to take T3 tablets.

DollyCon profile image
8 Replies

Hi

I'm new to this website.  I'm a long established well medicated Hypothyroid patient, taking Armour and T3.  During a difficult three year period towards the end of my mother's life, with me frequently taking long journeys to spend time with her, I became, after her death, increasingly forgetful and confused.  I put it all down to stress but in January 2015 I told my GP I was demented - because I certainly felt it!  Not long after, my gut ceased to function.  Then, once it was up and running I rapidly gained a stone in weight in five months.  Finally, at the beginning of this year I woke one day in a state of confusion - amnesic and losing words and unsure where I was.  I was uncertain whether I was indeed demented or had had a stroke.  I put it all down to the very stressful life I'd been leading.  However, following a blood test the lab reported: "This patient has not been taking her T3 tablets and it is impossible to say for how long."  There was an accompanying graph resembling a pyramid. I was horrified.  How could I have forgotten something so vital?  Clearly I must have forgotten to pack them in one of my sudden midnight dashes.  As my GP kindly pointed out, 'after two weeks you wouldn't have remembered you'd forgotten' - if you follow!

By this time I was in a mess: massive loss of confidence due to stumbling through conversations where words just disappeared, with me getting more and more confused and distressed, and with marked amnesia.  Gradually, with a few false starts my medication was re-stabilised, but not before I became hyper at one point - although I am now at last, improving.  But I'm not there yet.  Amnesia is a problem.  In the middle of a sentence everything vanishes and the more I try to recall it, the more agitated I become.  As long as I lead a quiet, fairly unsociable life, I cope.  I had just retired when this happened and the whole of the last year when I had planned to move on into a voluntary job, it was impossible to make that move as I was suddenly so unreliable and totally unlike my old self.  Recently I saw my GP to ask for some low dose beta blockers.  It occurred to me that if I could stop agitation in its tracks I would improve more quickly.  I am to take them on an 'as needed basis' but haven't yet tried them.  Because I have not yet returned to normal I do indeed fear that I will become demented.  I cannot believe, after all the very long years when I initially couldn't get treatment for my thyroid, having to fight even to get a diagnosis, it would come to this.  That I have actually caused myself harm. The irony is not lost on me!

Please, has anyone else experienced anything like this?  I am badly in need of reassurance.  Could it be that it will just take more time?

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DollyCon
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humanbean profile image
humanbean

I went through a prolonged phase where my memory went AWOL, although not for the same reasons as you. I have never managed to recover completely, but I have made big improvements. These are the things I've done or learned :

1) Making sure that my vitamins and minerals are at optimal levels. The particularly important things for me were iron, magnesium, and B vitamins.

2) Making sure I eat plenty of fat. The fats I eat are the ones that my ancestors would have recognised or understood e.g. beef dripping, lard, olive oil, coconut oil, butter. I avoid margarine, low-fat spreads, "I can't believe it's not butter", etc. I put a hefty teaspoon of coconut oil or butter in my morning coffee, believe it or not, and it has helped a lot.

3) Cut out sugar and carbs as much as possible.  I'm not doing well with this one - I love sugar. :(

4) If you take statins, stop taking them. They have never been shown to do women the slightest good. 25% of the body's cholesterol is found in the brain for good reason. The brain needs it to function correctly.

5) Do you take acid blockers a lot? e.g. PPIs (oneprazole, lansoprazole), ranitidine (zantac) Most people taking these are actually suffering from too little acid in the gut, not too much.

Clutter profile image
Clutter

DollyCon,

Do you have recent thyroid results and ranges you can post?  Most symptoms improve within 2-3 months of being optimally medicated.

shaws profile image
shawsAdministrator

Try not to worry to much which I know is easier to say than do. Brain fog is a common complaint amongst members even when on hormone replacements.

I think as you gradually work up to your T3 again you will feel much better. At one time if patients were not taking their thyroid hormones distressing symptoms could appear but they can be rectified.

If you don't have a weekly pill box (you can get them from a £ shop) I'd buy one and fill it weekly. So, if you suddenly thought 'have I taken it' you can look in your Pill Box. If you forgot completely you will be aware next day as the previous day's dose would still be in the box. 

Jazzw profile image
Jazzw

B12. Do you know what your B12 levels are? Hypothyroidism and B12 deficiency often go together, and I'm wondering whether over time your B12 levels have become so deplete that that initially caused you to forget to take your meds - and then the ensuing hypothyroidism made it worse. See pernicious-anaemia-society....

It might not be - but should definitely be ruled out! You said you had gut problems - it's very likely you didn't absorb very much for a while.

phoenix23002 profile image
phoenix23002

DollyCon...excellent responses and suggestions by others to your post.  The only other thing that I might add is the suggestion to get your adrenals checked.   Have the saliva cortisol test done.  Serious stress of any kind, especially prolonged stress (aggravated by your failure to take your thyroid meds) can drive our adrenals crazy and make it almost impossible to stabilize thyroid med dosages.  Probably wouldn't hurt to have your hormone levels checked also... saliva is better than blood tests.

Your experience reminds me of my sister's situation.  She had horrible short term memory problems, depression, exhaustion and thought she was going crazy.  She was a computer programmer and if she didn't take notes and write everything down during meetings, she could leave the room and remember nothing that had been said.

She went months with no clue what was going on but, when her thyroid levels were finally checked, her TSH was 46 !! Her doc asked her how she was even functioning and getting thru the day.  Well, duh.  Levo set her right and she has been fine since.  But it just goes to show how profoundly a compromised thyroid can effect our lives and our mental faculties.

DollyCon profile image
DollyCon in reply tophoenix23002

OMG - YES to what you said Phoenix.  The thing is, I don't want  to agitate my wonderful GP .... and they are in short supply ... by asking for such a test.

I'm really not into all these levels and tests - just a babe in these respects.

There is a fine balance in these matters.  As for knowing what the test results actually MEANT - well, I'm totally ignorant.  I will take everything you said into consideration and try to get a correct response.  Don't want to rock the boat.

Thanks all the same.  Much appreciated. 

phoenix23002 profile image
phoenix23002 in reply toDollyCon

DollyCon.... don't rock the boat.  Maybe act young and dumb...haha..  and let the all knowing, all powerful GP take the hint and maybe he will think it is all his idea?

But maybe say nothing and get the tests on your own?  If you aren't knowledgeable about these tests yet, just stay mum and read, read, study, study and become knowledgeable.  Knowledge is power and boy... most of us need all the power we can get.

A lot of us, even here in the US, find our docs (especially endos) pretty useless and we just use them for prescriptions and tests while we plow our own path and take our health into our own hands.  And yes, even here, many get their own tests done privately, especially when insurance won't cover them, particularly when the docs say  'we don't have symptoms'.

You are very lucky to have found this site.  Again, read and study and educate yourself as much as possible and when you feel comfortable ordering self-tests, share those results with folks on this site.  They have a wealth of knowledge and experience that they can share with you and help to guide you. 

You might ask the doc about checking your D3, B 12 and iron levels?  Those are pretty innocent but crucial to addressing thyroid issues.  Again, don't do or say anything that you aren't comfortable with.

DollyCon profile image
DollyCon in reply tophoenix23002

Will do.

Thanks again - all this help is much appreciated.

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