I am a little lost in my health, diagnosed with graves this year, had thyroid removed due to mass. Had a heart ablation due to a arrhythmia (prob caused by graves). Bloods have come back “within range” yet I still have loose stools, fast heartbeat with pain at times, anxiety and my right eyelid slightly bigger then the left , with twitching and irritation. I have seen a eye specialist that said I don’t have TED a few months back.
I don’t understand how my thyroid levels are “within range” and yet I still feel this way?
My endo cancelled my appointment for November and new one sent out for January, she has not seen me since having the thyroid removed, my doc has been testing my levels and only checking t4 and Tsh
I have no follow up with doc, just a text to say “within range, carry on with meds” nothing said about follow up bloods
I feel there is no point going to the doctor with my symptoms anymore because it gets me nowhere! I get told there’s nothing we can do for you because there are specialists dealing with it.
Is this it? Have I got to live like this for the rest of my life? Just accept it as my new body? What did you all do to feel normal again? I can not afford to go private or pay out of pocket for medication
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Mumms
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hi purple nails, thank you for your response, no FT3 tested, primary doctor only tested t4 and TSH. I take 112.5mg of thyroxine a day. My endo has given me 0 advice, and cancelled appointment straight after having the thyroid removed. So I am not really sure what to do as doctor sees results as normal and no bloods have been requested for me for the future. My appointment with endo is in January
The symptoms do sound like you might be ‘over medicated’ but the FT4 is good - you would expected to see a low (under 1) TSH with adequate FT4 & FT3. which make me think FT3 is low.
Ask GP request to request FT3 & state in blood test form notes - previously hyper Graves, currently on L-T4 please test FT3 (lab should take into account it & test as required)
Or contact endocrinologist department and ask if they can send you a blood test form for you to arrange blood test at practice then they can telephone you with results. As the appointment was postponed until January I don’t think that’s unreasonable.
Ask GP to also test Folate, ferritin, B12 & vitamin D if these aren’t optimal (not same as in range) levo wont work well.
You could ask GP to see if symptoms improve with slight levo increase.If not a full 25mcg daily increase - half of this (so an increase to 125mg)
Dr may be reluctant as FT4 good in range & will say you will be in danger of being over medicated or “hyperthyroid” - Point out TSH is mid range & show them the articles in this link confirming low TSH often necessary when on replacement.
Full testing can work out expensive if you find you need it frequently, but a basic function from Monitor My Health is £26.10 with Thyroid uk discount.
It’s a NHS lab so GP should really accept them without needing to repeat.
Do you test as recommended on forum- early appointment. Fast overnight (lots of water) delay dose until after draw? Avoid supplements containing biotin as can skew results.
I believe that the professionals should concentrate on the T3 in those who're hypo.
Our bodies cannot function as 'normal' if our T3 isn't optimum as it is the 'active' thyroid hormone and heart and brain have the most T3 receptor cells.
I am fortunate to be prescribed T3 alone and I feel well - and am symptom-free.
I've also reduced T3 slightly - by going 'how I feel'.
Doctors 'in general I believe' have little knowledge about how we develop a dysfunctional thyroid gland. We have lost our 'knowledgeable GPs' as the 'modern ones' don't seem to be. One phoned me and I told him he was wrong i.e. he stated T3 converted to T4. (I take T3 so he was puzzled why I had low T4). (A number of our 'older' GPs were pursued as if they were criminals and some resigned their licences)
How did our 'old fashioned doctors' (before blood tests and levo were introduced) diagnose patients? They knew all the clinical symptoms. I was fortunate to see two and the first thing they did when I entered, was to shake my hand 'I think they found the hand to be 'very cold' plus of course how the patient responded to them either desperate to have a proper answer and they were willing to prescribe other than levothyroxine .
Unfortunately they now seem to be limited by what they can 'trial' with the patient to try to restore their health.
The very first replacement that saved lives from 1892 onwards was NDTs (natural dessicated thyroid hormones) and no blood tests had yet been invented and it all depended on our clinical symptoms. NDTs were withdrawn!!!! those who had been fit and well on this were desperate when this happened.
I'm quite shocked that you have not been followed up more closely by the hospital as at least there, you will get a thyroid panel of TSH, T3 and T4 and advice on what to do next !!
I 'd try and talk with your doctor and if there is no chance of an immediate endo appointment and s/he is unable to run the appropriate blood test - do it yourself.
Many of us on here have had to resort to getting our own blood tests run, it's not ideal, it's not right, but where we are and in order to help you better we need more factual information in order to advise of your next best steps back to better health for yourself.
If you go into Thyroid UK - who are the charity who support this forum thyroiduk.org there is a page detailing the private companies who can run the appropriate blood tests for you - some of these companies offer a nurse home visit so this takes the stress out of the whole situation.
We need to see a full thyroid panel which is around 10/11 different results from the one venous blood draw - to include a TSH.T3, T4 antibodies, Inflammation and ferritin, folate, B12 and vitamin D.
Once you have back the results simply start a new post with the results and ranges and give a brief recap of your thyroid journey, and we can look back at previous posts to refresh our minds if necessary.
Arrange as early as possible morning appointment, fast overnight taking in nothing but water and take your T4 Levothyroxine after the blood draw.
If taking any supplements leave these off for around a week so we can see exactly what your body is holding.
You have Graves Disease and have recently had a thyroidectomy and it is essential that you are dosed on your T3 and T4 blood tests results and not a TSH and T4 reading.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on, and said to be around 4 times more powerful than T4.
Your ability to convert T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing also have a bearing on your ability to convert T4 into T3.
The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
We generally feel at our best when our T3 and T4 are balanced at around a 1/4 ratio - T3/T4 and with T4 up in the top quadrant of its range as this should in theory convert to good level of T3 at over 50% through it's range.
hi sorry to hear how you are feeling and to hear about such poor care post op. Sounds appalling. I have started to split my Levo dose, some at bedtime and some in the morning instead of taking all at once. This has helped with the slightly jittery feeling I get despite having hypo symptoms. If you can get a T3 via NHS that will help but if not then the £26 one mentioned already will definitely help. I’ve found cutting out dairy had the biggest difference to my gut health, I follow a strict autoimmune diet now. Hope you are able to get on top of it, sadly GPs don’t seem to care about symptoms only about lab numbers, which is daft. 🦋💚🦋
thank you all for the advice, I am waiting to speak to a doctor to request vitamin and Ferritin blood test, also spoke to endo department And was told they would be discussing me this week, then I should get a phone call. Will request for t3 test when they do. Will post results when all this goes ahead
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