25 mls starter dose but not raised because doc says now okay.

[smilingjane]

Hello lovely thyroid colleagues.

This is a post about my mum. she is 80 and has various health conditions.

However she has always been super active until a year or so ago, She had just recently had to stop Scottish dancing.

Her GP started on 25mls Thyroxin a couple of months or more ago and is saying that her thyroid is now fine.

My mum can hardly leave her chair all day and is suffering from cognitive impairment, all completely out of character.

I remember reading on this site or maybe somewhere else, that if you start with 25 mls of thyroxin that your body thinks oo good something is coming back in or starting up, ie the Thyroid gland and blood tests suddenly show okay when things are not.

Has anybody on here any advice backed up with a scientific paper of link to something with clout. My dad is going to the doc with her tomorrow and it would be really helpful if he could go armed with relevant up to😍 date info.

Thank you so much, everybody

Jane x

[SeasideSusie Remembering]

smilingjane

The fact that your mum is 80 might be a bit of a stumbling block. It would appear that it's been said that TSH is higher in older people so maybe her GP is being cautious. It doesn't make it right, of course, it's quality of life that counts and sitting in a chair all day from being super active is obviously not good. She needs to get back as close as possible to where she was before.

It's important to know exactly what her results are, with reference ranges, for TSH, FT4 and FT3, you can only "argue" for an increase if you have the results and can see they are poor. So make sure they ask the receptionist (not the doctor) for them, preferably before they go in to see the GP.

Do you have the results/ranges of tests when she was diagnosed?

A low dose of 25mcg tends to switch off the thyroid from making it's own hormone but isn't enough of a replacement dose to cover what the thyroid was making plus the extra needed that the thyroid wasn't producing and causing hypothyroidism.

[smilingjane in reply to SeasideSusie]

Thank you Seaside Susie

Tricky for me because I dont live nearby to my mum and she likes to think the doctors know what they are doing and wouldn't ask for her test results!

Might ask my dad though!

Thank you for getting back so quickly 👍

[smilingjane in reply to SeasideSusie]

Actually, think I will her GP myself !

[SlowDragon Administrator]

Can see you have Hashimoto’s yourself

Clearly your Mum needs FULL thyroid and vitamin testing including thyroid antibodies

Suggest you get private testing

[smilingjane in reply to SlowDragon]

Thank you Slowdragon

Actually should have said, step mum not real mum!

[humanbean]

You might find this post of interest :

healthunlocked.com/thyroidu...

Unfortunately doctors are being told that older people don't need a TSH as low as that of healthy people of the same age. I've seen numbers bandied about suggesting that a TSH between 4 and 6 or between 6 and 10 is okay if you're old. It is just another way of torturing the elderly in my view.

[vocalEK in reply to humanbean]

When I read that, it ticked me off. It never occurred to those geniuses that the TSH of older people might be higher because their thyroid glad was getting older, but not better? Did they not remember that at one time, it was thought to be OK for older people to have higher blood pressure, because it was "normal" for their advanced age. And did they not also recall that finally it was found that if you lowered their BP, those older folks had better health and didn't die as young?

[humanbean in reply to vocalEK]

Very good point about BP in older people!

[SlowDragon Administrator]

Do you use Medichecks or Blue Horizon?

Getting her full private testing

TSH, FT4, Ft3 and TPO and TG antibodies

Make sure she gets blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to test vitamin D, folate, ferritin and B12

Low B12 extremely common in the elderly

[smilingjane in reply to SlowDragon]

Thank you Slowdragon. She wouldn't consider private

[SlowDragon Administrator in reply to smilingjane]

It’s easy postal kit ....£79 when on offer and £25 extra to get blood draw if don’t want DIY finger prick test

[smilingjane in reply to SlowDragon]

I know

It's a good deal. It's not the money with her, it's the principal and a generational thing.

Nothing I can do.

Thanks Slowdragon 😊

[SlowDragon Administrator in reply to smilingjane]

So you need to make sure she gets hold of test results from GP

Perhaps go with her to consultation..(.or join in phone consultation if it’s not face to face ) and make sure GP tests vitamin levels, thyroid antibodies and Ft4 and Ft3

[smilingjane in reply to SlowDragon]

Hi Slowdragon

Please see response to mandyjane below.

I know that a video call would not be something my parents would agree to!

If mum isnt given more thyroxin this morning. I will write in to the surgery.

Thank you as always for your incite-full help

Jane 😊

[FancyPants54 in reply to smilingjane]

Sadly, with her attitude, she's not going to get better. Try not to torture yourself over it. It's a generational thing. My Mum won't have any tests done. Won't even ask the GP for them. She thinks if she needed them the GP would do them. I've tried to get her vitamins and minerals to take. Won't take them.

To get well from this condition you have to be prepared to test privately. Argue with GP's. Medicate yourself if your GP won't play ball and learn everything about the condition. Do all the normal vitamin and mineral stuff yourself. She's not about to do any of that by the sound of it.

My friend's Dad is in his 80's. He suddenly went from on the go all the time to sat in a chair all day. He was started on 25mg thyroxine. Felt much better at first then slipped again (as we expect). He's now on 100mg and back to normal, which is good because he's the carer for his wife who has become crippled with arthritis. But he had a good GP and he isn't afraid to put his case forward and stick to it.

[smilingjane in reply to FancyPants54]

Ah, I hope she does get better.

I am hoping the GO will have received my message this morning and increased the dose.

We will see.

I can understand people having complete faith in doctors.

Otherwise who will make them better? in their eyes.. Especially when very I'll and not used to the wonderfull internet.

Interesting a out your friends dad!

I will mention that to my dad.

Thank you Fancypants54.

I hope your keeping well 😊

Jane

[mandyjane]

Maybe as a start off if she is going today get her husband to request the correct blood are done as most doctors do not know what they are so she needs TSH, T4, T3, folate, ferretin, b12 and vitamin D. I am not sure how things can progess if she is only willing to believe doctors as they are worse than useless with thyroid. There is a list however obtainable via our website of more helpful doctors and endos. Might she ask to be referred?

[smilingjane in reply to mandyjane]

Thank you Mandy Jane

Thing is I dont live in the local and also both parents are of the old school. Doctors know best.

I did ring the surgery this morning, Yes I got through!! and passed on a message to the GP they are seeing, however the receptionists wouldn't take my phone no, said she would only pass a brief message on. Said the doctor would know the right thing to do.

If she isn't given an increase in Thyroxin today, I may write to her GP with some info,

They seem very stressed re the corona virus, staff off etc etc.

When I called my GP as well this morning she was also very stressed, saying 'its a nightmare here'

Thank you for responding and for all of your advice.

I hope your day is starting okay

Jane 😊

[smilingjane in reply to mandyjane]

Thing is she has other serious health conditions and it is difficult to tell what is overlapping with what. The main one is adult onset Luekiema , (had it for over 25 years) She thinks that's what the main issue is and maybe it is.

She does like and respect her doc and has been in his care for many years. She wouldn't even consider anyone else. Fair enough.

I will do what I can and if no increase in Thyroxin today will contact the doctor to see if we can have a chat.

Thank you so much for your help advice and thoughts

Jane 🤞

[SlowDragon Administrator in reply to smilingjane]

Leukaemia and hypothyroidism may be linked to leukaemia or its treatment

ncbi.nlm.nih.gov/pubmed/155...

ijhonline.org/article.asp?i...

[smilingjane in reply to SlowDragon]

Than you SliwDragon.

Really helpfull, as always

Jane 😊

[smilingjane]

I think your absolutely right!

Good yo hear about your dad xx