help with my mother’s results

[Bigfraz76]

hi, my mum is 77. She is taking 75mcg of levo. She’s fine, but not feeling her best lately. After testing the doctor says that everything is fine. Could I get some advice on her thyroid results, see if her problems are stemming from being under medicated. Thanks

[pennyannie]

Hey there Bigfraz -

Generally once on thyroid hormone replacement it is recommended that the TSH is maintained under 2 -

Years ago medication was started when the TSH tipped over 3 - so your Mum's result with a TSH at over 5 - and already on medication shows her very under medicated or non - compliant ???

I've just found this link which suggests a slightly different range from the GP notebook ?

gpnotebook.com/en-GB/pages/...

[Bigfraz76 in reply to pennyannie]

Thank you for reply. So you think that she’s very under medicated? By how much roughly?

[pennyannie in reply to Bigfraz76]

It's difficult to say - her T4 is around 46% and we generally feel best with a T4 up at around 70% -

Has she had her dose of T4 - Levothyroxine changed ?

If this just her yearly thyroid function test - how does it compare to the previous year ?

Ideally we need to see a T3 and T4 blood test reading from the same blood draw to check if conversion is compromised - as we need a good level of T3 to maintain cognitive function -

and with age - food metabolism is naturally slowed and it could just be down to low levels of the core strength nutrients - ferritin, folate, B12 and vitamin D.

[tattybogle]

TSH is over range indicating undermedication (or non-compliance , but i am assuming she does her take levo regularly)

when TSH is slightly over range on levo , GP should be asking how she feels, not just assuming she's fine ..... and if it's not 'good' , then a slightly over range TSH ought to lead to a small dose increase.

she may have to push quite hard for it , as they will probably say 'oh but when you are 'older' it's normal for your TSH to be higher , and yes , it's true that healthy older people do tend have a VERY VERY slightly higher TSH than younger people do , BUT that should not be used as a reason to leave someone so undermedicated that they don't feel well.

please follow this link to a reply i just wrote for someone else ~ healthunlocked.com/thyroidu...

it gives some useful references that will help get GP to increase dose if unwilling , sorry , too lazy to write it out again....

[Bigfraz76 in reply to tattybogle]

Thank you

[Bigfraz76 in reply to tattybogle]

she takes 75mcg everyday

[tattybogle in reply to tattybogle]

p.s i would suggest you get her to ask for a 'trial' increase to either 100mcg , or 87.5mcg which is much more likely to be agreed to if GP is reluctant, 87.5mcg would also be easier for her body to adjust to the increase.

GP's often prescribe 87.5mcg as '100mcg / 75mcg alternate days '

(12.5mcg tablets are available , but are stupidly expensive and only made by one or two manufacturers, so realistically the smallest tablet usually prescribed is 25mcg , but 25mcg is often a bigger adjustment than is needed , which can result in TSH going quite a bit lower and GP freaking out and reducing dose again ,, so for several reasons , its best to make smaller adjustments and wait and see if more is needed , rather than overcook it )

[Bigfraz76 in reply to tattybogle]

Thank you

[DippyDame]

How littĺe these medics know of thyroid disease!

Her TSH is too high, correctly medicated it should be close to 1

Her FT4 is too low

FT4: 16.6 pmol/l (Range 12 - 22) 46.00%

We aim to have both Frees roughly approaching 75% through their respective reference ranges

You can see that your Mum is undermedicated!!

Doctors diagnose and prescribe by numbers and often omit to factor in how the patient feels

You Mum's GP is doing the latter

How can her medication be correct if she is feeling under par, and, "poor compliance" is an assumption suggesting she misses the dose.... so forget that. Did he ask her?

However "under therapy" is correct yet he fails to pursue what is in black and white in front of him!!

GP should be increasing her dose and checking her vit D, vit B12, folate and ferritin levels which support thyroid function.

TSH, a pituitary hormone, is a poor marker after diagnosis, and is basically a messenger between brain and thyroid to adjust it's production of hormones.

FT4 is only half the story! It is the storage hormone which is converted to T3 in the cells

T3 controls metabolism and if low then metabolism runs slow and we don't function properly

FT4 and FT3 are the important results....but medics often don't understand this

Push for an increase instead of leaving your Mum getting increasingly under par for the next 12 months.

This might help...

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

I'm 79 and no longer prepared to accept nonsense from medics who lack the knowledge they should have!

Go, help your Mum, she's lucky to have you!!

Good luck!

[Bigfraz76 in reply to DippyDame]

Thank you for your reply. By how much do you think she’s under medicated?

[DippyDame in reply to Bigfraz76]

The usual increase is 25mcg but GP might be willing to trial her on 12.25 initially, now....that might help.

Depending on her general health going "low and slow" might work

I'd suggest you push for that then test again in 6 weeks and depending on labs you might add the other 12.25mcg

Or if GP gets clued up he might give her the 25mcg!

[bikebabe]

Does your mum take other medicines as well ? Calcium within 4 hrs of levothyroxine can affect uptake as can several other meds. And not to take within 1hr of tea/coffee /food. I’ve been surprised how many of my friends are unaware and take it with an early morning cuppa then have breakfast straight after. Having taken it from childhood myself it never occurred to me to read leaflet as an adult and no clinician warned me about calcium when I started taking that a few years back.

[Catlover1981 in reply to bikebabe]

I was never told by my GP but my pharmacist was the one who told me to take levo first thing in a morning on empty stomach and any iron or vitamins hours after.

[Bigfraz76 in reply to Catlover1981]

Thank you

[Catlover1981 in reply to Bigfraz76]

I hope your mum gets sorted out soon.

[Nelxy]

I'm 75 years and on 87.5mcg per day. I weigh just under 60kg.Prescription is for 100mcg, and 50mcg, and 25mcg levo tablets.

I take 100mcg on alternate days with 75mcg (so avoiding the piddly 12.5mcg tablet or having to try to cut a 25mcg in half) (also to avoid the ridiculous expensive to the nhs 12.5mcg tablet, and added to that it's difficult to find a chemist that has it in stock)).

I use an 'ultra fine point Sharpie marker' to write the day and date on the tablet blister pack so I always know where I'm at and also my son can check that I've taken it. (Some people prefer to decant tablets into the weekly pill boxes you can buy.)

My Lab (Leeds, Yorkshire) stipulates "Assuming patient on treatment (i.e. Thyroxine) for primary hypothyroidism, adequate replacement therapy indicated by TSH 0.2 - 2.0 miu/L

My last test result 0.63 miu/L . Normal range [0.2 - 4] So if I went over 2.0 miu/L on a TSH blood test I would be classed as under-medicated and be given an increase in Levothyroxine (which is a synthetic T4).

Hope this helps 🙂

Edited to add: I take levo first thing with a small drink of diluted fruit juice, then about 30mins later I have my morning cup of cappuccino 😊

Levo alternate day marked

[Bigfraz76 in reply to Nelxy]

Thank you