I’m new here. I was just after some advice if possible please. I had a total thyroidectomy, 1st op last December, second Feb this year and then RAI Treatment in March. I’ve been on levothyroxine since Feb, my dose has been changed a few times. I’m currently on 125mcg and 150mcg alternate days. I last had my bloods done in sept when I had a check up with my consultant. I have been struggling alot with anxiety, low mood, irritability, hand tremors and heart palpitations. I was on 125mcg everyday previous to this and I felt like a walking zombie.
My blood results were (this is all I got back)
FT4 21.2 (10-22)
TSH 0.32 (which they are aiming to suppress to less than 0.1)
Basically due to my anxiety and FT4 levels they are reluctant to increase my thyroxine dose and I’m guessing they don’t want to decrease it as they don’t want my TSH levels to rise any?
I have been reading alot of the posts on here about T3 levels, I don’t think I’ve ever had my T3 levels tested ? Is this something that my consultant would do or is it a case of I would have to get this done privately ?
I understand that it can take up to two years to get my levels right but I am finding my anxiety and also irritability 😬 and low mood increasingly hard to manage. I was advised by my consultant that they wanted me to stay on my current dose. I am due back next feb to see her and have bloods and a scan ect.
I’m just at a bit of a loss as to what to do. I suppose there isn’t much I can do, I just wondered if anyone had any advice please . I’m new to all this and whilst I have tried to remain patient in finding my new normal I dread thinking that this is it!
If you managed to read all my rambling thank you! I hope I’ve managed to include all the info needed for any advice .I really would appreciate any advice anyone has.
Thank you
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Hunter1983
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Do you always get same brand levothyroxine at each prescription
Do you take levothyroxine waking or bedtime?
Absolutely essential to regularly test Ft3 as well as TSH and Ft4……plus test vitamin D, folate, ferritin and B12
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Low vitamin levels common on just levothyroxine and as we get older too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water 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
Welcome to our forum and sorry to hear you feel so unwell. Was your treatment the result of Graves Disease or cancer?
Levothyroxine can take a good while to start working effectively as is dependant upon many other cofactors, particularly optimally iron & nutrients.
Your FT4 is high in range, but you need to know FT3 levels to gain a fuller picture. T3 is the active hormone that gives us well-being but is not tested as standard in the NHS. Therefore, members use private labs & post results complete with ranges for others to comment.
High anxiety is commonly either Levo medicated without adequate iron levels or in your case possibly elevated cortisol. Cortisol is an adrenal stress hormone that will have worked hard over your difficult year and may still be being produced in high amounts whilst trying to support unbalanced hormones and a body that is evidently still healing.
Conventional medicine measures cortisol by an 8-9am blood serum test but cortisol may also be measured by a functional saliva 24 hour test that gives not only info on levels but circadian patterns allowing determination of appropriate supplements. Are you sleeping? Also, if you post any iron and nutrient results (complete with ranges) members will comment.
I would guess that your T3, the hormone that does all the work, is low and you are not properly converting the T4 you are taking into T3. T4 is high and everyone is happy except you, who feel dreadful.
I had a thyroidectomy many years ago and it took several years for me to accept that I felt unwell most of the time. I read about T3, begged my GP to test it and of course it was under the reference range but my T4 was over range, because it was not being converted to T3 by my body. You can try asking your GP to test T3 but things have got trickier in recent years. You need to read up on what has been happening with pharmaceutical companies inflating the price, to understand the background. You can try asking your endocrinologist to test it but he may refuse and you will have to pay privately. There are many companies that can do it listed on this site. Then, if I am right and it is below range, you can either ask your endocrinologist to prescribe it, based on the fact that they took out your thyroid without explaining the full implications, or buy it yourself. There are members here who can tell you how to do that. I am fortunately still getting mine through my GP, very rare nowadays and it makes me furiously angry when I consider all those who have to source their own.
Keep asking questions on this site because you have come to the right place and with help from members your health will gradually improve but firstly you need to know the all important T3 result and then take steps from there.
Can I just add that a fully functioning working thyroid would be supporting you daily 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.
You are being just T4 - Levothyroxine which is a storage hormone and needs to be converted by your body into T3 that active hormone that the body runs on which is said to be around 4 times more powerful than T4 with most people needing to convert and utilise around 50 T3 daily just to function.
So, as you can see from the above, by not replacing your " lost own T3 thyroid hormone " production you have, in effect, been down regulated by around 20% of your overall health, and it's as obvious that your body is now struggling to keep up and your expectations of a full recovery not being met by not replacing what you have lost through surgery and treatment.
Your own ability to convert the T4 into T3 can be compromised by low vitamins and minerals especially those of ferritin, folate, B12 and vitamin D.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Some people can get by on T4 only : some people find that T4 at some point in time stops working as well as it once did for them and add a little T3 - Liothyronine to the T4 - Levothyroxine : some people can't tolerate T4 and take T3 only : whilst other people prefer to take Natural Desiccated Thyroid to restore their health and well being.
Personally I just think it makes common sense to replace what you have lost, and believe bot T3 and T4 should be on any patients prescription for if, and likely when, they will be needed if optimal health is the end goal.
Currently in the UK doctors can only prescribe T4 - Levothyroxine - though 20 odd years ago all the above thyroid hormone treatment options were available through your primary care doctor.
Now the rules are such that you need a referral to an endocrinologist for anything other than T4 and there is no guarantee that you will be acknowledged as medically needing more than T4 as there are financial restraints on prescribing T3 - Liothyronine and NDT in place and it is vey much a lottery if you will be successful or not.
Please start reading up on the Thyroid UK website, which is the the charity that supports this amazing forum, and first things first organise the full thyroid blood test profile so we can see where you are in your thyroid journey and what you can do for yourself to get back on track.
Thyroid UK also hold a list of specialist endocrinologists both NHS and private, who are supportive of thyroid hormone treatment options if you find yourself in this post code lottery and an area with little or no support for thyroidectomy patients.
I'm with Graves Disease and post RAI thyroid ablation in 2005 and became very unwell around 8 years later. I have been refused any treatment options other than T4 and so I have resorted to self medication and am much improved and have my life back, thanks in the most part to this forum and a couple of books.
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