Please help!!!: I am new posting on behalf of my... - Thyroid UK

Thyroid UK

141,245 members166,490 posts

Please help!!!

J6611 profile image
14 Replies

I am new posting on behalf of my 28 year old daughter. She reduced her levo from 175mcg to 25mcg and she was diagnosed hypothyroid in 2011. Please help I am at the end of my tether as to whether she will ever get better.

TSH high

FT4 normal

FT3 normal

Thank you

Written by
J6611 profile image
J6611
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Cleo1031 profile image
Cleo1031

Why???? Ask her, maybe ill advised

J6611 profile image
J6611 in reply toCleo1031

Her GP asked her to

Treepie profile image
Treepie

A reduction should never be so big ,25mcg at a time is right.

Best if your daughter posts her latest blood test results with the ranges ,which are shown in brackets, and includes folate,ferritin,D3 and B 12.

Normal is not necessarily optimal ! Do not rely on words like " normal" ,"high" ,you want the actual results.

She will then get some considered advice.

J6611 profile image
J6611 in reply toTreepie

Shall I ask her to post on this thread?

shaws profile image
shawsAdministrator in reply toJ6611

Put them on a new post with the results along with the ranges.

The doctor is very negligent to reduce her levothyroxine so severely. I have read quite a few posts over the past weekend with similar stories and it is so very wrong to adjust doses other than reduce (or increase)25mcg every 6 weeks.

Your daughter must be very unwell indeed and it all falls upon the GP.

When you post results you always have to put the results with the ranges. Ranges are important as labs differ and it makes it easier to respond.

She needs TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

The thyroid ones the doctor or lab wont do you can get them from one of our two private labs. They are home pin-prick tests.

Never accept the word 'normal' from a doctor or endocrinologist. We don't want normal, we want optimal and optimal means we feel well with no clinical symptoms.

J6611 profile image
J6611 in reply toshaws

She has posted under @shelley1989

J6611 profile image
J6611 in reply toTreepie

She has posted under @Shelley1989

Nanaedake profile image
Nanaedake

I'm sorry your daughter is having such a hard time. Thyroid disease is very poorly understood by doctors. Neither do they understand how thyroid hormone works or what makes patients feel ill. Neither do they know how to help us get better and stay well. If your daughter relies on her doctors to get her well then she will probably stay sick forever as most of us on this forum have discovered. However, she can get well again if she learns how to do it herself with the help of this forum.

Levothyroxine should not be altered by more than 25mcg at a time (50mcg at the very most as urgent measures). Altering levothyroxine by more than 25mcgs makes us fell ill. For me, I can only tolerate 12.5mcg dose change at the most and even then I get symptoms.

It sounds like your daughter probably has autoimmune thyroid disease. If she has blood test results then ask her if she'd like to post them here along with lab ranges and any antibodies tested because experienced people will help her to understand them and decide how best to address her symptoms and stay well.

She could read some of the success stories on this site to give her hope and confidence that she can live a better life with this disease.

With autoimmune thyroid disease, antibodies activity can raise thyroid hormone, temporarily reducing TSH levels. Doctors don't understand it and they panic and tell the patient to drastically reduce their dose which makes the patient feel even sicker and then takes along time to get back on the right dose again after the high antibodies settle down. They generally settle on their own and usually FT3 and FT4 are in the normal range despite low TSH. As doctors rarely test these hormones they don't have a clue how the main thyroid hormones work or what is really going on in the patients body.

Everyone here will help if you can invite her to join the forum and post her blood test results.

J6611 profile image
J6611 in reply toNanaedake

She had posted her bloods thanks

Nanaedake profile image
Nanaedake in reply toJ6611

Where did she post her bloods? I can see some high, low etc but to give good help we need the actual numbers and the lab ranges to really give accurate and detailed help. Lab ranges vary and what doctors call high or low may be normal for us.

J6611 profile image
J6611 in reply toNanaedake

She is newly registered. Her username is @Shelley1989

J6611 profile image
J6611 in reply toNanaedake

Under @Shelley1989

Nanaedake profile image
Nanaedake in reply toJ6611

ok, will take a look. Did anyone respond?

J6611 profile image
J6611 in reply toNanaedake

Not yet

Not what you're looking for?

You may also like...

Please help

I have ALL the symptoms of under active thyroid and have had two lots of blood tests in 4 months....

Please help!

I have been on levothyroxine since August and take 100mg. I have body aches, no energy, have lost...
RLM84 profile image

Please help!!

Hello wonderful people - please could I get some thoughts on my TSH levels please, so I am armed &...
janekathleen profile image

Please help

My Mum uses this web site as she has an underactive thyroid. I am at my wits end as to how I can...
M_V_B profile image

Endo results, please help!!

I have at least a 10-15 year history of illness which I suspected back then to be Hypothyroidism...
Flecmac profile image

Moderation team

See all
Jaydee1507 profile image
Jaydee1507Administrator
PurpleNails profile image
PurpleNailsAdministrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.