Log in
Thyroid UK
91,839 members106,105 posts

Thyroid Levels Variation and Circadian Rhythm

My Mum is 93 and has been hypothyroid for decades and taking levothyroxine 100mcg until and doctor decided to reduce to 75mcg based on the TSH. My Mum has developed dementia. I noticed today that Mum was quite normal during the day, talking about things using long and short term memory, she wasn't confused and you wouldn't know she has dementia. We had a cup of green tea late afternoon and quite quickly Mums memory deteriorated and she got confused. I have noticed this happens at the same time every day and I was wondering if it was linked to a change in thyroid or TSH levels later in the day. I have read that TSH levels reduce later in the day and I am wondering if T3 drops late afternoon which results in slower thinking, brain fog and other issues. I give Mum zinc selenium B12 D3 K2 Bvits. Does anyone have any ideas please?

17 Replies
oldestnewest

Can you post her TSH result here to see if a reduction in meds was really needed (and any previous ones - it is her right to have a copy of her results with ranges). If it was not justified try and get her back on the higher dose and see if her dementia goes away. It is too much of a coincidence that her medication was dropped and she suddenly becomes forgetful.

The latest absurd thinking here by the medical profession is that old people can have a TSH of 10 and that is ok. It isn't, it is age descrimination and ought to be challenged and stopped.

I hope you get your mum back to rights soon. Reaching 93 is very impressive 😊 she deserves good medical care.

4 likes
Reply

This is the earliest I started getting a copy of results -

2013 Reduction of levo to 75mcg after being on same 100mcg dose for decades with no problems and no memory problems, fit and healthy.

2013 I noticed the start 2013 when she couldn't remember the word windmill when we were looking at one and she had just a few days before been started on clopidogrel for a small clot in her eye. Mum was black and blue but left on clopidogrel.

9/6/15 T4 24.2 (12-22), T3 3.8 (3.1-6.8), TSH 0.08 (0.3-4.2) B12 and folate were high in range as I had been giving Mum supplements to make sure these weren't low. had MRI scan confirming vascular dementia, on report it stated 'not suitable for medication'. I had reported to her doctor for the previous two years that she was having problems and they just put 'memory problems' on her records and nothing was done. I asked for Mum to be referred to an endo, a letter or referral was sent by doctor.

4/2/16 T4 19.7 (12-22), T3 4.2 (3.1-6.8), TSH 0.03 (0.3-4.2).

29/7/16 T4 15.2 (12-22), T3 2.8 (3.1-6.8) TSH 0.01 (0.3-4.2) a doctor at surgery reduced levothyroxine to 50mcg as TSH too low. I argued that the T3 was too low but it was still reduced. I had to pay for Mum to see endo privately who said I was correct and the dose was raised again to 75mcg after a few months. Said to add 12mcg T3 privately which I have to import.

6/9/16 T4 23.8 (12-22), T3 3.9 (3.1-6.8), TSH 0.05 (0.27-4.2)

15/9/16 T4 22.4 (12-22), T3 4.3 (3.1-6.8), TSH 0.02 (0.27-4.2)

10/11/16 T4 18.9 (12-22), T3 4.1 (3.1-6.8), TSH 0.01 (0.27-4.2)

5/1/17 T4 15.1 (12-22), T3 4.5 (3.1-6.8), TSH 0.01 (0.27-4.2) I had to pay privately again for endo as Mum has still not received appointment for NHS endo after two years of waiting.

29/6/17 Pacemaker fitted.

July 17 DVT Rivaroxaban given, I had to stop supplements for dementia. Memory, balance, appetite, strength deteriorated since.

Mum is very weak and wobbly and has constant pain in grinding shoulders, had xray and doctor said take pain killers. Can hear them grating. No arthritis.

1 like
Reply

I am not at all expert on the readings. I think it is free T3 that is most important rather than T3 but hopefully others more knowledgeable can comment on the readings. I tend to think if she felt well then the medication should have been left alone. At least her TSH is not 10 or anything dreadful like that.

Reply

Get results from when she was on 100mcg and if not tested since dose reduced get this done

GP's can be TSH obsessed and don't look at the whole picture

1 like
Reply

Dramlouie,

Both TSH and FT3 drop in the afternoon. See healthunlocked.com/thyroidu...

In Jan 17 FT3 was 4.5 which means there is a scope to increase T3. Perhaps an extra 6.25mcg an hour to 90 minutes before your mother seems to deteriorate in the afternoon.

1 like
Reply

I shall try that tomorrow, will put in her pill machine. Thanks for the idea.

1 like
Reply

She's definitely not over medicated on any of the results you posted, and has always had room for an increase! So terrible when doctors reduce people's doses arbitrarily and sad to see anyone going downhill on it :(

Clutterer's suggestion is spot on, and amounts to a small dose increase. You may even want to increase some more after she's settled in on that does and hopefully get new tests. The most important number is freeT3, which you want to be in the top third of the range.

Having a T3 dose split into at least 2 during the day is good. When I firststarted splitting mine I got a lovely boost almost immediately, even feeling better when I got out of bed in the morning, and that was without an actual increase, so hopefully your mum will get a nice improvement, too.

Reply

I brought up the subject of the elderly asleep in care homes to Dr P and he said that its atrocious that because they are elderly they are all probably low in T3 but nothing is done about it. Trouble is that because Mum has dementia she is under a doctor that reported me to a safeguarding enquiry because I care and have the courage to speak up if I think the doctor is wrong. I was investigated for 6 months, telephone calls from social services but luckily I backed up all my conversations by recording them on my mobile so I could check what I had said. Mum was prescribed a drug whose side effects were arrythmias and bradycardia but because I questioned the fitting of a pacemaker because of these symptoms and suggested a different drug to see if it made a difference I was overruled because of the dementia and they went ahead with the pacemaker and gave Mum a DVT. I was then investigated for refusing life saving treatment for my Mum. She had no symptoms.

I am interested in what you are saying about myself, my T4 is 9.4 but because my TSH is 0.01 my doctor wants me to decrease my dose of NDT. I haven't done so and keep asking for a referral to an endo but she says I have to come off all thyroid meds before I am referred. This is the second doctors surgeries I am on, I have used up all the doctors in the town! But what you say about getting up in the morning, I can't get out of bed, I drag myself around, eyes closed. I am on one grain NDT 6am and another 1am. I was awake till 4am and decided to take my dose early and then woke up at 9am. Given up on doctors, I get more information on here!

Reply

It's worth experimenting with timings. I take mine when I wake up, between breakfast and lunch, then between lunch and evening meal. I found the one in the afternoon made a big difference.

NDT contains T3, and theoretically the half life of that is 6 hours, so it may be a waste to take one at 1am. But not necessarily, as some people recommend dosing during the night, and it may help you stay asleep.

TSH is irrelevant really once you're on replacement. And freeT4 is also very misleading on NDT. Because the tablets contain T4 AND T3, the T4 is the less important part. The more important number is freeT3, T3 is the active hormone your body actually uses, and T4 is just the storage hormone.

From the blood tests of just TSH and FreeT4 you can't tell much about NDT dose, only the freeT3 is really relevant.

Absutely crazy talk to say come off your medication to see an Endo! Doctors sometimes see throid replacement as a completely irrelevant thing you can live comfortably without!

2 likes
Reply

I was finally diagnosed hypothyroid after suffering for 17 years with typical symptoms and telling the doctor my Mum was hypothyroid. It has and is affecting my life and I still havent managed to get an endo appointment through the NHS. The doctors want to look at each symptom separately and not looking at the whole picture. Paracetamol for the pain, exercise for the stiffness, anti-depressants for the anxiety, sleeping pills etc etc. I haven't taken any of their rubbish. They are now trying to get me back onto levo 25mcg before I see an endo going from 2 grain NDT. I shall try yet another doctor. I will take your advice.

2 likes
Reply

Good luck Dramlouie! I think you will need it to find a doctor that supports you :(

I started out with thyroid cancer, they removed the thyroid, Levo didn't work for me, and then I was just dumped. I was stuck in bed the whole time, not able to wash myself or get dressed. I'm now self medicating with NDT and starting to get a bit more of a life.

But the NHS doesn't support NDT at all. My GP have told me they won't even do blood tests for me. I do have an Endo, the one who did my surgery, and she knows nothing about thyroid! She does tolerate the self medication, though, and gets me freeT3 tests. But now that's only every 6 months, so I buy my own mail order tests every 6 weeks.

Reply

Its a tragedy, I feel my life is passing me by, I look so much older than my friends, I am stiff, weak and we were all school pals all 60 this year. I am meeting them tonight but they will be full of energy and chatting away and I will be trying to keep my eyes open. All started when my children were born, I went to the doctor and all I kept getting is 'what do you expect!' Well I expected at least that I had the strength to pick my baby up! Useless. We have to get on with it on our own.

Reply

Just wanted to add that Nitrous Oxide can cause issues, blocking the B12 receptors, although the fact that she's OK during the day and fades later seems to indicate more likely a thyroid issue. Can you give her NDT instead of levo?

Reply

I thought the nitrous oxide reacted with the B12 to change it - rather than an effect on the receptors?

1 like
Reply

Could be, I just know there's an effect. My father in law is demented after several operations. Sadly.

Reply

Trouble is the carers work closely with the doctors, I couldn't even ask them to put a drop of olive oil in her ears so she can have her ears syringed ready for a hearing test without them double checking first. Its ludicrous, she's my Mum and I feel as though she has been taken from me. She looked after me when I was a child now its my time to do my duty and look after her, they treat me as if I can't be trusted. The carers give her the levo in the morning, all checked off by the doctors. the only thing I can do is to give the extra as NDT myself everyday without them knowing. I use a pill machine to give Mum Bvits, etc, I could add it in there.

Reply

I could give NDT as an addition to the levo already prescribed, the carers act with the doctor and I have no say in the matter. They wouldn't give NDT.

Reply

You may also like...