Confused
I’m going back time and time again to the same issue. My life is getting home as quickly as possible so I can sleep
The weight gain!
I’m careful what I eat. In fact I’m possibly not eating enough
. No appetite . I could sleep 14 hours .So levo was raised to 150 and I feel the same.
Thousands of YouTube videos later I’m not sure what’s going to help
I asked for a full screen but they are satisfied that my levels are fine?
It’s ruining my life
First step is to get FULL thyroid and vitamin testing
Are you in the U.K.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
What vitamin supplements are you taking
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that 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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
I remember that feeling well, it was about 50 years ago and amongst other things it ruined my career.....so do all you can to resolve this!
My thyroid journey is detailed in my bio that might give you some encouragement.
There is no quick cure... but there is a remedy. So hang on in there and stay positive!
I knew nothing about hypothyroidism back then and despite frequent visits to medics nobody could tell me what was wrong....don't be surprised if they diagnose you with fibromyalgia and/ or CFS/ ME
If 150mcg levo is leaving you struggling the chances are that your T4 to T3 conversion is poor leaving you with low FT3.....you probably need T3 added to your levo dose
Your labs will show high FT4 with low FT3 if conversion is poor.
Medics are generally clueless about anything beyond the most basic thyroid function
For good health every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.
Low cellular T3 = poor health.
One role of thyroid hormones is to promote oxygen delivery to tissues. So, if you have low thyroid hormone levels (hypothyroidism), your tissues may have low oxygen levels....and exhaustion
But, first you need to have a full thyroid test as SlowDragon describes, to provide the clues. We then join up the dots!!
Do you have any results that you can post....including reference ranges.
With more information we will be able to help
No tests
I asked for the T3 but she rolled her eyes and wrote on the sheet tatt
Which was Tired all the time!
So I don’t understand the reluctance to test
Laziness and/ or ignorance!
Request a referral to an endocrinologist and if the GP refuses complain to the Practice Manager on the grounds that an outdated diagnosis of TATT is not resolving your poor health or improving your limiting quality of life.
Rolling her eyes is a shocking reaction....don't let her off with that.
It's your life and health....not hers
Complain!
Hello Miss Williams :
Are you still taking T4 - Levothyroxine as discussed on your previous post 7 months ago or have you done as you suggested and reduced down your dose to zero T4 - and are you now taking an alternative treatment option - such as T3 or Natural Desiccated Thyroid ?
I didn't realise I'd written to you previously when I wrote the rest of this post - so maybe some repetition here - but nevertheless I trust valid and helpful :
Thyroid UK - the charity who supports this patient to patient forum now has around 135 K fellow sufferers registered ( just scroll up to the very top of this screen ) and I'd guess of that number - 80% could immediately identify with what you have written -
It is likely a larger dose of T4 - Levothyroxine to when first diagnosed but it is obviously not working well for you and not relieving the insidious symptoms of hypothyroidism.
T4 - Levothyroxine is a pro-hormone - a storage hormone - and pretty much inert in itself -
and needs to be converted by your body into T3 the active hormone that runs all your bodily functions from your physical ability through to you mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
In order to know how well your body is converting and utilising the T4 we need to see both a Free T3 and Free T4 blood test reading and range - taken from the same bloods.
Currently the NHS thyroid blood test has been reduced down from 3 to 1 blood tests - the TSH - which does not offer enough information and why we are forced into organising our own private blood tests and sorting ourselves out if we want our lives back.
Conversion of T4 into T3 can also be compromised by non optimal core strength vitamins and minerals - so if wanting to see your full thyroid panel and everything we need to see
also have measured your ferritin, folate,B12 and vitamin D and inflammation and thyroid anti bodies, as already detailed in the links already given by ' Speedy ' Dragon.
Conversion of T4 into T3 can also be compromised by any physiological stress ( emotional or physical ) depression, dieting and ageing - and yes, not eating enough - will down regulate your body's ability to convert the T4 into T3 - so in effect ' slow ' everything down further with your body thinking you are in ' starvation mode ' and switching ' off ' your metabolism.
This is where we all start and once with the results simply post them and the ranges back on this forum in a new post/question and you will be talked through what it all means and your next best steps back to better health.
Arrange as early as possible morning appointment - I use the nurse home visit option - it's a little more expensive - but once a year - a necessary option for me that has held me well these past 7/8 years - when I fell into this forum researching low ferritin.
If taking any supplements stop these around a week before the blood draw so we measure what your body is holding rather than that just ingested -
and do not take your T4 on the day of the blood draw until after the blood draw so we measure what your body is working with and not the pill you took a couple of hours ago.
If you start reading around on the forum and get lost - just press the Profile icon top right on my laptop or likely bottom left on a phone and that takes you back to everything you have ever written on this forum-
If you want to read anybody else's thyroid journey just press their icon alongside their name :
We can all read everything you write on your own post and if you want to reply to anybody specifically just make sure you press their reply button box as then they get notified that there is a message waiting for them.
You may end up in information overload - don't worry it's a bit like a jigsaw with no picture especially if dealing with that awful brain fog - but stuff does stick and the fog does lift given some help and understanding from forum members.
I’m still taking the levo as I was a bit thwarted as I’m also fighting since 2015 to have my daughter seen to get her endometriosis diagnosis
I don’t know.. why does everything seem like a huge battle?
Sad to say - but yes, currently just living one's life seems a constant challenge which is not conducive to anyone's health and with medical issues the delay and the goal posts constantly move which I found exacerbated my symptoms and why I gave up the fight and started self medicating some years ago.
It seems to be patient heal thyself
Very true :
You are not alone - many of us have been where you are now, and have slowly dug our way out. Your results may be "fine" on paper for the surgery, but not for you and your body. Ask for your results - they are free and they have to give them to you - and you may see something immediately that shows why you are feeling so ill. If not, come back here and give us the results and we can take it from there.
There are so many wonderful people on here and I really believed it saved my life. It does take a while, but with all the help and support, we wil get you feeling better. Hug.
I too was on 150 levo daily to try and raise my T3 but it very rarely got above 55% so I have started trialling T3. Everytime I would increase levo dose I would feel good for 2 weeks and then crash again.Excess t4 causes problems long term.You should definitely get full thyroid done ASAP and post results on here.If you listen to your GP you won't get well.
I can see that great advice has been given - here and on your post of 7 months ago. So did you get your B12 - Folate - Ferritin - VitD tested ? Thyroid hormones work better when your vitamins and minerals are GOOD 🌻
That’s great
Nothing as yet
It’s nigh on impossible to get an appointment but I’m going soon armed with the info and insisting on a thorough blood test
Are you able to have the at home Private Testing done as detailed above by SlowDragon ? Thorough testing with your GP is impossible it seems..
I will look it up
I’m trying to get an appointment with my GP for blood tests
Yes but the NHS will only test TSH. You need TSH FT4 FT3 AND Antibodies tested to know exactly what is going on....
Ok that’s very helpful
I’m going to arrange the bloods at gp
I will ask for the above and then will have to go private if they refuse
It's the labs that refuse - in spite of the GP making the request. I can only share with you what I have been reading here almost daily since 2011. We have to take charge of our health in order to find wellness....
It’s incredible really
What really irritates me is that Dr Brian Moseley and the rest of these TV doctors say things like : Eat more berries
They haven’t got a clue or are they just happy pushing these pills?
Hence my comment above about taking charge of your OWN health. Click onto my pic on this reply and you can read my Bio 🌻
Re unexplained weight-gain if hypothyroid!
Trial to look for food that is gluten-free and I found that weight was easy to reduce over a number of weeks just by avoiding gluten and arrived at a good weight.
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