Advice please. I had total thyroidectomy 14 years ago. In the last year my tsh levels have been dropping and stand at 0.03 whilst T4 normal. I have been lowering thyroxine starting at 100mcg and am now at 25mcg daily.
How can this be right? I have no thyroid but am hyperthyroid!
CalamityJane TSH is a poor measure of thyroid hormones. You have no thyroid so why would the body try to stimulate it by sending out thyroid stimulating hormones (tsh)? You cannot be hyperthyroid unless ft3 and ft4 are over range.
You need to judge your dose on how you feel and your levels of ft4 and ft3. Ft4 and Ft3 are the thyroid hormones available for your body to use. T4 being normal means very little. The range of normal is quite broad so you need to find out where within that range of normal you feel well. Ranges vary between labs but let's assume the range for ft4 is 10 to 25. Your doctor would say normal if your ft4 result was 11 and he would say normal if it was 22. And there's an awful lot of normals in there! you need to find what normal suits you.
You need to have TSH, fT3 and fT4 measured to know what’s going on. Even after total thyroidectomy there can be remnants left which can grow although this would have happened sooner. A low TSH doesn’t tell you much without fT3 and fT4.
If you had Graves’ it’s possible you now have high TSH receptor (TRAb) and these can suppress TSH.
Thank you. TSH 0.03 and T4 18. It was all normal until recently. My NHS trust do not do T3 - too pricey!
Thank you. TSH 0.03 and T4 18. It was all normal until recently. My NHS trust do not do T3 - too pricey!
An FT3 test costs the same as an FT4 test. That's just an excuse. The real reason is that doctors don't know what T3 is and wouldn't understand the results - and even if they did test it, they'd still only look at the TSH!
You cannot be hyper if you don't have a thyroid. That is a physical impossibility. You could be over-medicated but only an over-range FT3 will tell you that. And, now you have the proof - and so does your doctor if he would care to admit it - that the TSH does not tell them 'everything they need to know'. In fact, it tells them practically nothing. Someone with no thyroid on 25 mcg levo only sounds very dangerous to me.
What does the FT3 show you and why is it useful?
The cost of the test is quite low. Im sure I read is something like an additional 0.89p.
Doctors argue FT3 is the last to change, but there are many cases where FT4 can be good & FT3 isn’t good - in fact it’s very poor.
How do you feel? do you have hyper type or hypo type symptoms?
So we suspect your FT3 is low, but we need to test to prove theory.
But the policy is set not to test it. - By ignoring FT3 doctors can deny having to treating it. The cost of LT3 is extremely expensive. Specialists are forced to go ‘out on a limb’ to prescribe it - so in most cases they don’t.
Folate & ferritin, B12 & Vitamin D often need to be optimal for levo to work well. Has doctor tested these? Often don’t especially vitamin D.
Often quickest way to make progress is testing privately.
Here’s a list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies (Medichecks advanced thyroid) Others a basic function only. (Monitor my health)
Some also have discount codes available.
thyroiduk.org/help-and-supp...
You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.
Is that something you think you could manage?
Don't exaggerate! It costs 92p not 89p! see healthunlocked.com/thyroidu... .
I have hyper symptoms, lost a few Kgs and a variety of other things, incl infrequent heart palpitations. What do docs give LT3 for?
The thyroid gland produces two main hormones. It mainly creates thyroxine (T4) and a tiny quantity of triiodothyronine (T3). Part of the T4 is then converted to T3 in the body’s cells and tissues.
T3 is an active hormone and is needed by all of the cells and tissues. So even if FT4 good FT3 can be low and you have hypothyroid symptoms.
Symptoms can be misleading. They can be very varied and high FT4 low FT3 can cause an unusual mix of symptoms. As someone who was mildly hyper for years and hypo for a short time. I felt my worse when my FT4 was high & FT3 was low, followed closely by both being hypo. I hasn't noticed being hyper, but the slow progression likely had hidden it.
Then again your hyper type symptoms it might be your FT3 is really high too, or even over range.
LT4 (Levothyroxine) is the synthetic thyroxine equivalent. Most manage well & are able to convert adequate FT3.
Having optimal folate, ferritin, vit D & B12 help many when conversion needs improvement.
For some, FT4 doesn’t make then well and they need a addition of LT3 (Liothyronine) the synthetic triiodothyronine. (Some need LT3 only)
Some years ago LT3 was made an extortionately high price item. Many were told is was now a banned drug and many had it withdrawn. In theory it is available “if clinically needed” but Clinical Commissioning Groups (CCGs) - now Integrated Care Board (ICB) misinterpreted the national guidance making the criteria such that it’s made virtually prohibited. Can be very difficult if needed.
Natural desiccated thyroid (NDT) (made from animals) was the original treatment & would contain both elements, but has now been entire replaced but LT4 in mainstream treatment.
First you need to find out where your FT3 is.
If FT3 is high you’d likely need a thyroid scan to see If residual thyroid has regrown.thyroid antibodies would ideally be tested but a specialist likely has to arrange Graves antibodies.
Just to clarify antibodies:
GP may agreed to test
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies
These are associated with autoimmune thyroiditis
TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)
TSI (Thyroid-Stimulating Immunoglobulin)
These are associated with Graves.
Many thanks for your advice
What dose of levothyroxine were you on when fT4 was 18.0?
The thyroid can grow back. Even during a total thyroidectomy some tissue can be left behind, it can be hidden behind other structures or too close to the vocal chords for the surgen to risk digging around too much. That's why they do RAI after a total thyroidectomy when there is cancer.
Why did you need a total thyroidectomy?
Perhaps you thyoid has grown back and you need to come off levothyroxine. Given you are displaying signs of hyperthyroidism they should measure fT3. Point this out to your GP or get a cheap (<£30) home fingerprick test to measure TSH, fT3 and fT4.
Jim - As you have written about something that has been on my mind a lot would you happen to know if there is any definitive way of my finding out what thyroid disease I had all those years ago or may still have as I was only told by the hospital that I had gone overactive with a goitre and needed to have a thyroidectomy or RAI - something I never questioned. I now know that I had post partum thyroiditis (overactive) after birth of both my sons which was wrongly diagnosed as post natal depression. I then went badly overactive after a virus and had a partial thyroidectomy (2/3) which apparently has now rejunevated and I am now the proud owner of half a thyroid and another multi-nodular goitre. GP thought it must be Graves purely because I had gone overactive but since reading so much on the forum I wonder if she was right. Incidentally, I've had antibody tests for both in the past year or so with neither showing raised antibodies. Thanks in advance for your input.
I’m not very up on thyroiditis, spontaneous (not really the correct term) or autoimmune but I don’t think you have Graves’. Graves’ is confirmed with elevated TRAb. Sounds like you have multi-nodular goitre with ‘hot spots’, I don’t know what is the best treatment for this.
I was on 50mcg with that data. Total thyroidectomy done because my levels wouldn't balance despite years of trying and I was getting very ill. Diagnosed later with lupus sle.
Will look into testing at home as I do have physical symptoms of wing hyper. Thank u
Yes, do the home testing and based on the numbers and how you feel you can adjust your levothyroxine or discontinue it.
Calamity Jane - What Jim says is absolutely true as I had a partial thyroidectomy almost 30 years ago because I went badly overactive after a virus and developed a goitre and obviously then went underactive. However, approx 2 years ago I felt a familiar lump in my neck which appeared at a bad time because of the pandemic but eventually I had an ultrasound scan which showed that not only had I got a multi-nodular goitre again but that my thyroid had regenerated and although I had had 2/3 removed I now have half a thyroid and he is absolutely correct in saying that it can also happen to people who have had a total thyroidectomy. I would definitely get tested as he suggested and maybe then you should be looking to get referred for a scan. Do you know if you have Graves Disease or not or was it something else?
Thank you. I was told it was probably Graves as my thyroid was a 'jelly mess'. Nothing in my notes to reflect this though. So ask GP to check it hasn't regenerated? Anything else?
Yes I've never been sure either as to what disease I had - now asking Jim in case he has any ideas. I went overactive around 18 months ago after being underactive for years but hospital endo didn't want to spend money on antibody tests (he is of the opinion that it doesn't matter what thyroid disease you have) so I paid out and did my own tests with the guidance of the lovely people on this forum. The TRAb test is the one you need to show antibodies for Graves and possibly your GP may do it for you (mine wouldn't), and if your GP is accommodating perhaps you can get your ferritin, B12, Vit D and folate done as well.
Thanks I've written all those tests down and will ask GP.
Good Luck and will be thinking of you!
STRONGLY recommend getting FULL thyroid and vitamin testing done
Via GP ideally
Being hypothyroid can cause hyperthyroid type symptoms including weight loss (living on adrenaline)
Low vitamin levels tend to lower TSH
ALWAYS Test thyroid levels early morning around 9am and last dose levothyroxine 24 hours before test
Test 6-8 weeks after being on constant unchanging dose and brand levothyroxine
What vitamin supplements are you currently taking
Only do private testing early Monday or Tuesday morning and watch out for postal strikes
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Many thanks.
Five year check up after thyroidectomy 
Thyroidectomy for Hyperthyroidism/Graves Disease
Hyperthyroid and TED - Is Thyroidectomy the only answer?
TSH level increase after total thyroidectomy(8 years ago)
