Hello, I’m hoping someone can help me, I had a goitre removed 2013 been on levotyroxine since. Currently 100. Iv been feeling very unwell for a few years. Every symptom of hypothyroidism. Cold all the time, constipation always, brain fog, a aches in joints and muscles, tinnitus in left ear, blurred vision. Anxiety difficulty losing weight and many others. Some how I feel it’s to do with my thyroid. I have sent of a blood test (paid) because it’s so difficult to get a GP to see me let alone listen at this time.
I eat healthy and walk miles. I don’t smoke or drink alcohol.
The nurse called with results today. She said everything is normal except T4 is raised. She also said I would need to discuss with my Dr 😩
I’m understanding the results that I would need to just cut down my levotyroxine slightly but won’t that make my symptoms worse ? I thought with raised T 4 I would have the opposite symptoms to the ones I have. I am confused and there’s no chance of. GP consultation at this time. Should I just cut my 100 thyroxine in half. Iv posted test results in case someone here can help. Thank you 🙏🏼
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Aliceharper
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Just testing thyroid levels is completely inadequate
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If took levothyroxine before test, Ft4 is false high result
Ft4 is slightly high, but Ft3 is very low
Ft3 is only 30% through range
Helpful calculator for working out percentage through range
Yes my test was early morning before food etc. My vitamins were tested a while back and all normal except high B12. I take B12 support also vit D and magnesium.
I’m just so confused. I was discharged from the endocrinologist back in 2013. My Dr never sends for bloods he just repeats the prescription. I have to ask them to check and they always say it’s all normal which is why I sent of the private test. Thank your for your reply 😊
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Many people after thyroidectomy can not manage on just levothyroxine, but need the addition of small doses of T3 prescribed alongside levothyroxine
But important to have OPTIMAL vitamin levels first
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3......NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)
Very important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email at
Do you always get same brand of levothyroxine Which brand?
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 thyroid antibodies or all relevant vitamins
I take the same brand and always early morning before food or vits. I’m guessing I should try to see a real endocrinologist not my gp. I was thinking I was over medicated even though my body is saying otherwise. I’m fed up with being freezing cold and having pain all the time ( carpel tunnel) hips and now my feet and terrible muscle pain in my legs. Brain fog is making me feel something else is wrong but I know it’s thyroid !
That nurse doesn't know much about thyroid, does she. It's your Total T4 that is high, which isn't the most important.
There are two types of T4 (and T3, come to that): Free T4 and Bound T4. The Bound T4 is bound to a protein carrier that transports it round the body, in the blood, to where it's needed. But, the body cannot use it whilst it's still bound. The body can only use Free T4.
A Total T4 test measures how much T4 you have altogether in your blood: Bound + Free. But, it's the measure of the Free T4 that is most important. And, that isn't even at the top of the range, so you definitely don't want to reduce your dose of levo. And, certainly not by 50 mcg! That would be too much in one go.
You actually have a decent level of FT4, but the problem is that you're not converting it to T3. T3 is the active hormone needed by every single cell in your body to function correctly. So, it's low T3 that causes symptoms. T4 is basically a storage hormone, and doesn't do much until converted to T3.
There can be many reasons for poor conversion. One of them is low levels of nutrients. You say your nutrients were tested last year and were all 'normal'. But, 'normal' just means 'in-range'. And, just being 'in-range' often isn't good enough because the ranges are too wide. So, ferritin should be around 100; folate more than mid-range; B12 at least 550 (serum test) and vit d around 100. Is that what your results looked like?
You say you're taking B12, but are you also taking a B complex? The Bs all work together, so need to be kept balanced.
You also say that you have difficulty losing weight - which isn't surprising given your level of T3. So, does that mean that you're on a low-calorie diet in an effort to lose weight? Low-calorie diets are another reason for poor conversion, so are not recommended for hypos. It's a bit of a vicious circle, I'm afraid.
Thank you for all your information. I went to see a private endocrinologist today who confirmed what you told me. He prescribed a 3 month trial of T3 liothyotyine 20mg. I now just need to find a pharmacy who will dispense the prescription at a reasonable price. I will post back in six weeks to say how I’m doing. 🙏🏼
Thanks for the reply 😊 yes Iv started a diet because I feel even though it’s just a stone or so overweight if I could shift it my leg pains and joint pains might go. I don’t know what my vit results looked like my Dr just said all normal over the phone and said B12 was high so stop supplements. The time that folate was low. She gave me a prescription for 5mg folic acid and said take for two weeks only
I'm not sure that starting a diet is the best course of action. You could be shooting yourself in the foot. And, if the extra weight is water-weight, dieting won't even help it. Most hypos put on water-weight, not fat. I think you should wait and see what effect the T3 has on your weight and your leg pains, before doing anything as drastic as going on a diet.
Your doctor was wrong to tell you to stop your B12 supplements. If you do, the level will probably just drop again. If i were you, I'd get a good B complex, one which contains methylcobalamin and 400 mcg methylfolate (for after you finish your two weeks of folic acid) as a maintenance dose. Igennus do a good one, and you can find it on Amazon.
As for the other results, 'normal' just means 'in-range'. You need to know where in the range those results fall because 'normal' is not the same as 'optimal'. Ask at reception for a print-out of your results. If you live in the UK, it's your legal right to have one.
Hi greygoose, the endocrinologist has done all of the vit levels and will talk me through the results. He went through all of the last 3 years results and my medical history that I requested my gp email to me. ( I had to pay ) based on all of that he suggested I needed T3. He wrote the prescription but I won’t start it until all the updated vitamin results are in. I didn’t stop my B12 even when the gp told me to because I always thought you could never have enough B12. I have ordered the B complex from Amazon that was recommended to me. I also ditched the diet as soon as you said it’s not a good idea! I am hoping to see the tinnitus and whooshing in my ears subside and my joint aches and muscle cramps as well as chronic fatigue and chronic constipation all improve. I’m not excepting miracles but Iv been living half a life for a long time now with many other symptoms and feel like I’m going crazy so at this stage any improvement will help. The endocrinologist was supportive and thanks to all of the replies I received from my post I have taken action and all of your advice to hopefully improve my wellbeing so thank you all 🙏🏼
Just one more point about muscle aches and cramps. They could be due to nutritional deficiencies. Vit D, for example, which you've just been tested for, which is one of the reasons it's so important to get the actual numbers - and, be warned, as a general rule, doctors know nothing about nutrients. So, don't put your faither 100% in whatever they tell you. Always check here.
Muscle cramps are often due to low magnesium. Most people are deficient in magnesium - hypos even more so. And, blood tests for mangnesium are unreliable. So, it's best to just take some - especially if you're taking vit D. Excess magnesium is excreted.
And, one that nobody ever thinks of testing: zinc. Hypos often have low zinc and high copper - although it's not always that way round. And, they do need to be kept balanced, so best to test both.
I used to have terrible muscle pain, and being on thyroid hormone replacement didn't help. I used to take 4+ Ibuprofen every day. Until I started taking zinc, and the aches and pains disappeared almost over-night. I haven't touched Ibuprofen since. So, worth it if you can get those tested, too.
Can I just add that a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1.T2 and calcitonin plus a measurable amount of T3 and T4 said to be about 10 T3 + 100 T4 :
Personally speaking I just think that when there has been a medical intervention and the thyroid surgically removed or RAI ablated and burnt out in situ that both T3 - Liothyronine and T4 - Levothyroxine should be on the patient's prescription, for if, and probably when, both these vital thyroid hormones will be required to restore the patients health and restore levels of T3 and T4 at high enough levels to give the patient back their wellbeing.
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.
T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on and is said to be about 4 times more powerful than T4 and I read the average person uses about 50T3 daily, just to function.
As you will see from the above without replacing your own thyroid production of T3, you have, in effect been down regulated by around 20% of your overall wellbeing.
Some people can get by on T4 only, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both T3 and T4 dosed and monitored independently to restore wellbeing and good health.
Your ability to convert the T4 into T3 can be compromised if your ferritin, folate, B12 and vitamin D are not maintained at optimal levels and you may find you will need to supplement these yourself as, you may fall in the acceptable NHS ranges, but not at a high enough level to support good thyroid hormone conversion.
The optimal conversion ratio of T4 into T3 is said to be 1 / 3.50 - 4.50 - T3/T4 - with most people preferring to see their conversion at around 4 or under.
If we divide your T3 of 4.20 into your T4 of 20.00 we get 4.76 so this shows that you are struggling and not converting well the Levothyroxine into the T3.
It will make sense to organise a full thyroid blood panel to include these core strength vitamins and minerals so we can then see if these need building back up to improve your conversion.
There are full details on the Thyroid uk website as to where to get private bloods actioned if your doctor can't help you, and Thyroid uk are the charity who support this amazing forum.
If you accept a dose reduction in T4 - which you don't need to as you are in range - your T3 will go lower and that in turn means more debilitating symptoms of hypothyroidism.
Your Levothyroxine is coming in at 80% with your T3 coming in at just 30% through the range - ideally T3 and T4 need to be balanced and most people feel better when both these essential hormones are in the top quadrant of both the T3 and T4 ranges.
Currently doctors can't prescribe T3 - Liothyronine - but an endocrinologist can - BUT it isn't a given, and more about where you live in the country and which CCG you come under.
Thyroid uk holds a list of " sympathetic endocrinologists " so it might be in your best interests to know who you might like to get referred to if you doctor offers you this option.
P.S. I'm with Graves Disease post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and was refused both Natural Desiccated Thyroid and a trial of T3 by my doctor and hospital : I now self medicate - both treatment options worked for me, and I am currently entering my third year taking NDT and am much improved and have my life back.
Thank you for this information. I have taken the list of endocrinologist from thyroid uk and have booked to see one. I am determined to feel better and appreciate all the comments and advice from all of you 🙏🏼
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