Thyroid UK
88,820 members103,413 posts

Throxine dosage

I had a TT five years ago and have never felt well since my TSH level is suppressed 0.01and I am on 100 throxine.doctor wants me to drop down to 75 I have refused so he has referred me to encrinologist .my results are

October 2016

TSH 0.01

T4 15.9

June 2017

TSH 0.01

T4 18.4

I asked for T3 levels to be tested but they weren't t done

I have felt unwell joint and muscle aches

Tiredness

Since last September I saw a rheumatologist who said my vit d was low (30) and b12 was 219

She diagnosed me with fibromyalgia I have been taking vit d and b12 and am starting to feel better

Was really annoyed today when doctor rang (locum not my own doctor) to tell me to drop my throxine to 75 I had a long discussion about why I wouldn't t drop only for him to tell me I was in danger of AF if I had surpressed TSH I asked him where was the evidence to prove this guess what ? No answer so his reply was I will refer you to encrinologist

If the encrinologist suggests I drop to 75 can I refuse?

I feel so fed up with all this none sense but at a loss as what is best to do .

Since I ve had my thyroid removed my cholesterol has risen to 6.8 and my anxiety levels have risen

Interesting point from the doctor was he said on my notes after surgery the encrinologist has suggested keeping my TSH at around 2 !! First I had heard that

I know lots of people on this site have similar battles any suggestions on how to face encrinologist ?

Piedo

7 Replies
oldestnewest

Some people have to keep their TSH suppressed to less than 0.5 to prevent thyroid cancer from returning. It's called suppression therapy. I'm sorry you feel unwell and have joint ache. I have experienced similar problems. I improved my vitamin levels and am now much better. You will probably find as your vitamin levels increase, you won't need a much levothyroxine as it will be more effective so perhaps you could argue that you will consider reducing Kevi dose once all your vitamin levels are optimum but you need to have them all checked and optimal, not just 'in range' first. I found Selenium helped too as it improves conversion from T4 to T3.

Reply

Remind your GP about the high cholesterol levels and ask which is more dangerous, high cholesterol or slightly suppressed TSH? Also, if they were really concerned, they should be testing your FT3 level because if that is in range then a slightly suppressed TSH should not be too great a concern perhaps?

2 likes
Reply

Essential to have vitamin D at high end of range, adding Magnesium which is a vitamin D co-factor is important too

B12 & folate work together and both need to be at good levels

Vitamin B complex recommended if taking B12 - may help too - but if you do take this then remember to stop it (or any other supplements with biotin in ) 4-5 days before any thyroid test. Biotin can falsely affect test results

Good Ferritin important to

When all these are very good AND they test FT3 then can consider their request

Also perhaps Consider getting a DIO2 gene test to see if there's underlying genetic reason

1 like
Reply

Thank you all for replies and advice I have been on dose vit d and k2 and b12 plus magnesium b complex I have been feeling better wonder if this is the reason my t4 has risen from 15.9 to 18.2

Piedo

1 like
Reply

since your cholesterol has risen and your full of aches and pains the cause is B obvious you are not on enough thyroid meds but equally your not converting the t4 in levo into the t3 that every single cell needs to function

usually this is because

ferritin

folate

b12

vitd3

are below halfway in their ranges as they must be for the t4 to t3 conversion to occur

Reply

Thank you reallyfedup( know how you feel)!

When I see encrinologist I will ask for all of those to be checked I also think I will ask them for a heart as they keep going on about surpressed TSH and AF

I know since it have been self medicating with vit d and b12 my t4 has risen

Piedo

1 like
Reply

My Thyroid was removed in Oct 2015 prior to this I was not on any medication. My french surgeon then wrote a letter to my GP stating that he wanted my TSH suppressed to between 0 - 1. to avoid any reoccurring cancer.

I was on 100mg Levo and feeling very ill. I now self medicate with NDT and feel OK. My TSH is still suppressed.

1 like
Reply

You may also like...