GP changed Levothyroxine dose.

[Olivegarden]

Hi,

I had a total thyroidectomy in September 2023 due to a compressive goitre and started on 125mg daily of levothyroxine.

In September 2024 my TSH was 0.2 (0.4-5) and T4 15 (9-29). So GP reduced Levo dose to 100mg.

I had a follow up test 2 weeks ago with GP and TSH 11 (0.4-5) and T4 12 (9-29). I also took a private test this week with ‘monitor my health’ which showed TSH 15.3 (0.27-4.2) T4 16.1 (12-22) T3 3.2 (3.1-6.8).

I am due to speak to my GP this afternoon. I know they go by TSH so I want to be prepared for the discussion, is going back up to 125mg the right thing to do?

Thank you.

I realise from results below I need to start taking vitamin D

Note - vitamin D 54

HB 145g/L

Ferritin 98 ug/L

TSAT 22%

Active B12 98 pmol/L

Folate 9th/L

[pennyannie]

Hello Olivegarden :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg :

T3 is the ' active ' hormone and said to be around 4 x more powerful than T4 and you are being prescribed T4 - a pro-hormone that needs to be converted in your body into T3 which requires co-factors such as ferritin, folate, B12 and vitamin D to be maintained at optimal.

The TSH relies on the internal body's mechanism of the HPT axis working well -

however without a thyroid this Hypothalamus - Pituitary - Thyroid internal feedback loop is broken - as there has been a medical intervention and your internal physiology now changed - with this internal circuit loop now open ended - making the TSH a very unrelaible measure of anything -

and the reason why you must be dosed and monitored on your Free T3 and Free T4 readings -

Sadly in primary care most doctors are working from just TSH readings and guidelines not fit for purpose -

We generally feel best with T4 up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70% through its range.

On the MMH results - your T4 is at around 46% with your T3 at under 3% through its range.

The body runs on T3 not T4 - much like the fuel needed to run a car and we need a full tank to get us through the day and back home safely in order to do it all again, after a good nights sleep with our body repaired, restored, and recharged while we are asleep,

and with the thyroid responsible for the full synchronisation of all your bodily functions from your physical through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

So - yes, in the short term you need to start to build your T4 up into the top quadrant of the range where you will have the best chance of seeing an improved level of T3 -

and suggest you ask to be referred back to endocrinology where at least the complete TSH + T3 + T4 will be run in order to know, how best to medicate back to optimal T3/T4 levels.

I understand the system is very backed up - maybe get the Patient List of Recommended Thyroid Specialists and Endocrinologists - NHS & Private - from admin @ thyroiduk.org

There are 3 main treatment options -

We all are started on T4 - thyroid hormone replacement - the cheapest and most easily managed option which works well for around 80% of those who take it-

whether they be with or without a thyroid - we are all bunched together and the treatment options the same.

Some find after a while T4 seems to not work as well as it once did - and that by adding in a little T3 - likely at a similar dose level to that their thyroid once supported them with - they are able to restore the vital T3/T4 balance in thyroid hormones.

Others can't tolerate T4 and need to take T3 only - as you can live without T4 but you can't live without T3.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland but derived from pig thyroids, dried and ground down into a medically graded powder which is then made up into tablets - referred to as grains - and the original treatment for hypothyroidism and successfully used for over 100 years- and now the most expensive treatment option.

[Olivegarden in reply to pennyannie]

Pennyannie, thank you so much for your reply.

I’m trying to understand all this, it’s so hard when you talk to a GP and they tell you they know best, My surgery will not test for T3. I will have to see what they say this afternoon, But I will consider a private appointment,

I will work on improving my vitamins but do you think going back up to 125mg daily will help?

My body is certainly still adjusting as I also had my gallbladder removed last September (the pre op blood test is what triggered the reduction in Levo dose). I’ve also been working really hard to reduce my cholesterol.

[pennyannie in reply to Olivegarden]

The cholesterol will right itself once you are optimally medicated - and tht is putting the cart before the horse - though a lucrative earner ( I believe ) for doctors.

When you read around I think you'll even find the guidelines to doctors suggests they treat the hypothyroidism first before treating cholesterol.

nhs.uk/conditions/statins/c....

I'm not sure if the removal of a gallbladder changes anything - we were born to have one - and I know how much I miss my thyroid - so guessing there maybe some ' knock on ' - need to read around before I say anything remotely sensible.

So yes - on the MMH results your T4 isn't even 50% through the range and you need to build up the T4 to around 80% - so for MMH range you need your T4 up at around 20 -

and for your NHS range you need the T4 up at around 25 -

and this last NHS result shows your T4 at 12 in a range of 9-29 - which is around 3/20 = 15% ??

Please check my maths as I just use my head - which currently is totally bunged up !

[jgelliss in reply to pennyannie]

Pennyannie so well explained. But the sad fact of the whole thing is that none of us are one size fits all. Why can't the manufacturers make different thyroid meds NDT , T4 without fillers that make many of us not well and T3 the same with fillers that don't work well for us either. Unfortunately there are countless amount of people that depend on various kinds of Thyroid meds. They should be available and plentiful so that we don't need to have extra unneeded stress.

[Ozxpat]

I totally sympathise with your plight. Having been unable to get Armour here in the UK I was put on Levothyroxine for 6 months and refused an increase twice. Once I was seen by a PA and next a male GP who at least agreed to test me and managed to get both T4 and T3 done. But ultimately I was told that everything was in range Finally after twice paying for private tests I put all my results going back 8 years (7 of them on Armour in the US), converting measurements where necessary and listing percentages, on a chart so even the dimmest person could see the difference. A different GP - female this time and much more willing to listen - agreed to increase Levo from 50 to 75. I feel better but still not great. About to have more blood tests to see if I can go up to 100. Honestly the best you can do is read up, understand as much as you can and be prepared to insist. You have to be your own advocate. And maybe try to see a female doctor? 😁