Levothyroxine dose ? Up or down ?

[Sixties123]

Hi everyone hope you are all doing well . I have a few questions which I’m going to apologise for long waffling post ? I’m feeling pretty low and rubbish at the moment .

Diagnosed Graves’ disease had Radioactive Iodine treatment 2012 then hypothyroidism kicked in . ( I’ve tried going private for T3 and/or T3/T4 combination but that meant long journeys and I never quite knew if I was doing the right thing as my GP wasn’t really with me on this and didn’t understand )

I have psoriasis and Psoriatic Arthritis and now quite recently Ulcerative Colitis having Stelara inj to help all 3 of these conditions every 8 weeks - it’s early days.

My issues are I have gained quite a lot of weight which is proving very difficult to lose despite me not really eating much ! Honestly have little appetite . I usually have breakfast and tea and some fruit and maybe a biscuit . The weight is mainly round my stomach and upper body and around my face and neck . I am shattered most of time . I have zero motivation and I crash at around 3/4 pm to the point of exhaustion feeling sick and need to sit down/lay down and often fall asleep. I feel fatigued and weak . I have ectopic beats and have had a 24 hr ecg which said to get thyroid checked (17/9/24 appointment ) and I need an echo but no appointment yet ) I am experiencing hair loss , loss of any libido, I have got high cholesterol , itchy skin also . Low mood but hardly surprising . I find it difficult to exercise due to the lack of motivation low mood and fatigue but also I have psoriasis in my soles of feet which cracks and bleeds .

BLOODS

10/5/24

TsH was 0.71 range 0.3-4.50. My ft4 16.6 range 11-22. FT3 3.5 range 3.1 - 6.8

Had another tsh done and it was 2.25

No ft3 or ft4 done for some reason . I am seeing Endo 1/10 but feel intimidated and she makes me feel like I know nothing and baffles me with long words . Does anyone know what might be going on ? And what I should do or ask her ?

I am currently taking 125 mcg Levothyroxine one day and 100mcg the next .

Thank you for persevering with me . And thank you to anyone who can offer any advice . I’d just like to be armed when I see her .

regards

Lesley x

[pennyannie]

Hello Leslie :

We are here to try and help explain a few things that may well be relevant to your thyroid health status - and will try and support you to become your own best advocate -

so when people who should know better use long convoluting words in order to shut us up - it is us who have to persevere with them - in order to get better thyroid health for ourselves.

So I too had RAI thyroid ablation for Graves back in 2005 and becoming much more unwell some years later fell into this Thyroid Uk forum in around 2015 and started my thyroid journey back to better health.

RAI is a toxic substance that slowly burns out and renders your thyroid totally disabled in situ, without the need to slit your throat, so sounds the least worst option, but longer term we now have research that acknowledges what many of us end up living with -

a reduced Quality of Life - though doubt you'll ever find a doctor confirming these facts :-

ncbi.nlm.nih.gov/pubmed//30...

Other research suggesting for Graves much longer term treatment with Anti Thyroid drugs : -

pubmed.ncbi.nlm.nih.gov/338...

The thyroid is a major gland responsible for full body synchronisation from your physical well being and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism and living without a thyroid is no walk in the park, as you may have been led to believe.

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 - with T3 known to be the active hormone and around 4 x more powerful than T4.

T4 - Levothyroxine is a pro-hormone which needs to be converted in your body into T3 the active hormone that runs the body much like fuel runs a car.

We need a full tank of thyroid hormones to get us up, out the door, and then back again with enough thyroid hormones left to do everything we need to do and to restore, replenish and repair our bodies overnight ready for the next day.

No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - so just being somewhere in a range - is not good enough for us as some ranges are too wide and you may need to be supplementing these yourself - which we will advise on.

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH :

When taking T4 only medication - Levothyroxine - we generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around a 1/4 ratio T3/T4.

Currently your T4 is at around 51% with your T3 at around 11% -

so you are currently under medicated and also struggling to convert the T4 into T3 -

and going from what I've read and my own situation with Graves and post RAI thyroid ablation 2005 - you will likely ' do better ' with the addition of some T3 so to replace both these vital hormones that were once produced naturally by your thyroid.

Some people can get by on T4 only - Levothyroxine:

Others find that at some point in time T4 seems not to work as well as it once did and that by adding in a little T3 - Liothyronine - they are able to restore vital thyroid hormonal balance and feel better:

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

Whilst others find their health improved better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains and the original treatment option used successfully to treat hypothyroidism for over 100 years.

Graves Disease is a poorly understood and badly treated Auto Immune disease for which there is no cure - I found the most well rounded of all I researched that of Elaine Moore - books, website and forum - elaine-moore.com

All things thyroid - thyroiduk.org - which is the charity who supports this patient to patient open forum to which I 'm totally indebted as are many forum members who care and share to help others get back on track and offer the help and support so sadly lacking in mainstream medical.

[Sixties123 in reply to pennyannie]

Hi Pennyannie, thank you very much for your detailed response. Im just working my way through it . If its not too personal a question and I would understand if you dont want to reply ... what treatment regime are you on and are you ?? optimal at the moment ? do you have a consultant that you are confident in ? thanks Lesley

[pennyannie in reply to Sixties123]

I have been taking NDT for the past 6 years and know I am optimally medicated as my cognitive function is much improved and the dementia I thought I was dealing with now gone - and mentally so much improved as to how the NHS would have me.

I was refused both T3 and NDT by the NHS in 2018 and decided to self medicate and buy my own thyroid hormone replacement, run my own blood tests - now just once a year and supplement as necessary for the core strength vitamins and minerals.

[Sixties123 in reply to pennyannie]

well done for taking your health into your own hands . im afraid I wouldnt know how to treat myself to become optimal ,. Do you find yourself a healthy weight or have you not experienced weight issues ? i am really struggling with it - feel like i have no metabolism . x

[pennyannie in reply to Sixties123]

The excess weight I carried when on T4 monotherapy was the last issue to resolve itself - and I only realised I'd lost weight about 18 months into self medicating -

though I haven't bothered buying any new clothes because of this and still ' big ' as I'm around 5'10'' with size 9 shoes - and have always had a weight issue and now understand that I've been hypo since a child.

I was so much more happier having my brain back as that to me was the worst of my symptoms apart from the consequences of the RAI that caused me to have no saliva for around 18 months and living in constant awful pain like your mouth is full of concrete - hard to explain but so very very painful 24/7 when awake.

Details on my profile page - just press the icon alongside my name if interested.