Long story short I have been taking Levothyroxine for around 8 years and within this time I have had a constant battle with my GP to manage my symptoms. Unfortunately I have found that it does depend on which GP you get as to whether they will increase Levothyroxine.
My latest results were:
FT4 14pmol/L. [11-23]
TSH 7.3miu/L. [0.27-4.5]
First GP said no change to current regime. Second GP increased my Levothyroxine to 150mg. Symptoms were and still are unbearable. Sleeping all the time and bearly able to keep eyes open through the day. Low mood, anxiety, achy joints, dry skin, hair falling out.
I have to wait 3 months to be retested (apparently) and after 8 weeks I am still sleeping way too much.
I have only stumbled across this issue since downloading the NHS app and being able to view my actual blood results!! I have a strong suspicion that my bloods have always been hypo as I have had an awful 8 or so years since diagnosis. As far as I know I have never had antibodies checked or whether I am deficient in any vitamins. I actually may request my bloods medical records for the past 10 years to see if I have been poorly managed all this time!
I am trying to take supplements with posts I have read but I am just exhausted with the whole thing. It really does grind me down. I thought maybe getting some private bloods but funds are a bit tight at the moment.
Any help/moral support/guidance would be gratefully received 🙂
Written by
Pinknosenena
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In a nutshell - T4 is a pro-hormone and needs to be converted in your body into T3 which is the active hormone that runs all of the body's requirements -
and your thyroid the controller of your whole body's synchronisation from your physical capability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
When hypothyroid the body struggles to extract key nutrients through food no matter how well and clean you eat and mediocre levels of vitamins and minerals can compound your ill health, further than necessary.
No thyroid hormone replacement treatment works well if the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D are not up and maintained at optimal levels -
I now aim for a ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D around 125.
Just being in an NHS range somewhere is not ideal, with some ranges too wide to even be sensible, and prescriptions not suggested until you are out of the range and on your knees.
Once on Levothyroxine - T4 - we generally feel best when the Free T4 is in the top quadrant of its range with the Free T3 tracking just behind at around 60/70% through it's range.
Currently your T4 is only 25% through its range and once on thyroid hormone replacement the TSH should be towards the bottom of the range under 2 and likely under 1 -
a TSH over 3 indicates symptoms of hypothyroidism and T4 is then prescribed -
you are already on T4 - and I would imagine you may have absorption issues - there is liquid T4 - maybe this would suit you better ?
Do you take the T4 on an empty stomach and wait around an hour before eating or drinking anything ?
Currently the NHS yearly function test is generally just a TSH reading which is a very limited measure of anything once on any form the thyroid hormone replacement and occasionally, some people get a T4 reading and if your symptoms of hypothyroidism are not resolved, and increased doses of T4 - do nothing for you - some GP 's then suggest anti-depressants leaving you feeling - not listened to nor believed :
So, first off we really do need to see a full thyroid panel - sometimes referred to as an advanced thyroid panel results and ranges to include :
TSH - Free T3 - Free T4 - inflammation, antibodies and ferriin, folate B12 and vitamin D -
and then we can read these results for you, explain how everything works together and recommend your next best steps back to better health.
it is overwhelming and like a jigsaw with no clear picture - but keep reading, stuff does sink in, and you too can come back from this and find yourself again - with your health and well being restored with a little effort and support from this patient to patient forum.
and if you doctor can't help you - there are Private companies listed on the Thyroid Uk website - thyroiduk.org - the charity who supports this forum - who can - and where we all seem to end up having to go to - at east once - and then taking back some control of our own health and getting better despite some hurdles we tend to find along the way.
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies TPO and Tg
FT3 is the most important result followed by FT4
T3 is the active hormone and for good health must flood every cell in the body.
Optimising esential nutrients would be a good start
GPs are not very thyroid disease savey....as you have discovered!
I don't think you have ever been correctly medicated. This happened to me. After almost 20 years on levo ( max 200mcg) I could barely function and knew if I was to recover I had to take control....and learn.
With correct medication you should be fine....but it will take time so patience is vital!
First you need to build your case using available info.
When I joined the forum I was clueless about hypothyroidism despite being on levo for years!
We're all in this thyroid mess together so plenty of support and advice available here....the collective knowledge and experience of members out weighs that of any medic!!
Excellent idea to request copies of previous notes from GP reception...they will form a picture of where you've already travelled
So.....start your onward journey to recovery here!!
Post whatever info you can source and any new labs you can manage to have tested ( test kits are a valuable birthday etc present!)
Presumably you are currently on 125mcg levothyroxine daily?
Which brand of levothyroxine
Do you always get same brand?
Yes you do need to wait 6-8 weeks before retesting after any dose change or brand change in levothyroxine
On levothyroxine the aim is to be on high enough dose to bring TSH to around 1, Ft4 and Ft3 at least 50% through range minimum
ALWAYS test all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually
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GP response - just as predicted!
GP finally responded to recent blood results 
Am I a poor converter?
Referral from GP to BUPA
Due for thiyroid bloods tomorrow 
