Hi. Im a female turning 40 y/o and lives in UK. I was diagnose of hyperthyroidism last April this year. My lab test were:
April 4 2024
TSH = <0.01 (0.3-5.0)
FT4= 52.7 (7.9-16)
FT3= 19.6 (3.8-6.0) doctor started me with carbimazole 10mg once a day and propanalol 20mg twice a day. After 2 weeks done another blood test and results were:
April 22,2024
TSH = <0.01
FT4 = 21.6
FT3= 7.1
Anti thyroid peroxidase 19 (<9)
Tsh receptors antibody 17.4 (0-0.9) Doctor said to continue my carbimazole and propanalol same dose. However after a week i develop hives and it's very itchy. I saw my endocrine doctor on May 8 and she changed my meds to PTU 100mg twice a day and just to finish my propanalol for 3 weeks then stop. Last saturday I develop lump on the lower side of my neck which is bothering mo so I went again to Gp but they are too slow so yesterday I wen to hospital and they checked my thyroid function again and schedule my ultrasound scan on my neck this coming tuesday. My latest result were:
May 17, 2024
TSH= <0.01
FT4= 13.4 (normal range)
FT3= 5.7 (normal range)
all my bone profile, ferretin and B12 were also normal. Doctor told me they wanted to incease my PTU to 150mg twice a day as my TSH still low but I refused. I told him that what if my FT4 & FT3 become low i will be hypothyroidism then for which he agree. He told me to continue the PTU 100mg twice a day until I see my endocronologist. My question is am I going to remission? Do i need to lower my PTU? how could I know if im going to hypothyroidism if the next blood test will be after a month or so? sorry for the long post but I'm hoping someone can help me. Thank you in advance
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Thank you slowdragon for the reply these were my latest results and ranges. Im started taking selenium and co-q10 vitamins and planning to add Vitamin A, C, and E.
May 17, 2024
TSH= <0.01
FT4= 13.4 (range 7.9-16.0)
FT3= 5.7 (range 3.8-6.0)
Calcium 2.39 (2.2-2.26)
Adjusted calcium 2.43 (2.2-2.6)
Vitamin B12 281 (120-900)
If ever my endocrinologist told me to increase also my PTU as I can see all the post from the UK most of the doctor here are basing on TSH. Do you recommend I'll take PTU 100mg once a day insted of 200mg twice a day? thank you
so your Ft4 and Ft3 look good ….possibly you might need to increase PTU
Retest again in 6 weeks
Shows exactly why it’s essential to have the lab range
You need folate, vitamin D and ferritin levels tested
B12 is too low
Get folate tested BEFORE adding a vitamin B complex
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week or so later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Hi slowdragon sorry but im a little bit confused on your first reply you said i have to reduce the dose of my PTU as my FT4 and FT3 is within the range and now on your second reply you said that I have to increase my PTU? Correct me if im wrong please. Im so confused right now as this is new to me and you are more knowledgeable, it would be grately appreciated if you could help me pls. Thank u so much
One more thing is you mention to stop biotin 7 days prior blood test as it gives false results. I took my co q 10 3 days already including the day (May 17) when my blood was taken. So it means that my result my be wrong?
Biotin interference is very specific to biotin - and due to the way the testing procedure technically works. (But not all assays work the same.)
A quick search did not find anything to suggest CoQ10 interferes with blood tests. But rather too many "we don't know" issues to be sure what it does - directly or indirectly.
helvella - Biotin supplementation and testing
A short article about how and why biotin can affect blood tests. Includes information about how to avoid any problems.
thank u helvella it such a relief to hear that as my FT4 and FT3 is on normal range now. Im just confused now if the titration of my PTU will be increase or decrease as i mention to slowdragon.
You look not too bad at present. But you might need to increase OR reduce PTU at some point.
And any changes should usually be modest and proportionate - unless you suddenly change (e.g. become distinctly hypothyroid or hyperthyroid when more significant changes might be needed).
thank u helvella. I do understand your point and as far as i know we are basing on recent lab test result for titration of medication ? My recent blood result was on May 17, 2024 my tsh still suppress <0.01 but my FT3 and FT4 were within the normal range. Do i need to decrease the dose of my PTU, continue the dose or increase base on my recent blood test? Thank u
It would appear that you are dealing with Graves Disease - as your Thyroid Receptor antibody - TRab reading is 17.4 - in a range of 0.00 - 0.09 :
Graves is an auto immune disease and something has triggered your immune system to turn and attack your body rather than defend it - and generally only gets diagnosed when the major glands and organs of the body, the thyroid and/or eyes become the target of the immune system attack.
There is no cure for Graves and an Anti Thyroid drug is prescribed, either Carbimazole or Propylthiouracil - PTU for short - to semi-block your T3 and T4 thyroid hormones rising higher and higher and putting additional strain on your heart.
All the AT drug does is ' buy you time ' while we wait for your immune system to calm back down again and hopefully this is just a ' blip ' and your thyroid will revert to normal function - given enough time - without the need for any drugs.
It is a bit like a plane waiting for a landing slot. circling above losing height and fuel so to have a smooth landing - and similarly you too have had a smooth landing back into range and now the PTU will likely be' fine tuned ' which can take some time and skill on the part of the endocrinologist - as blood tests tend to run behind symptoms - so keep notes on what symptoms you experience so at appointments you can offer information rather than just be a mathematical equation for the computer to solve.
The NHS generally allocates a treatment window of around 15-18 months with an AT drug so it's early days and with anything thyroid related ' low and slow ' generally the better route to take.
We do have some research which you may find of interest :-
I found the most well rounded of all I researched was that of Elaine Moore- books and website - though too late for me - as I had RAI thyroid ablation for Graves back in 2005 when I knew nothing, in shock, and simply followed the mainstream medical narrative.
If you go into Thyroid Uk - the charity who supports this forum thyroiduk.org - there is a very comprehensive list of both hyper and hypo symptoms - which may help you understand where you are in this phase of ill health - but like anything - it's not that easy as some symptoms can sit in both hyper and hypo ' land ' :
The range is just that - a guide - and quite where your T3 and T4 need to sit within the range for you to feel neither hyper nor hypo - is unique to each of us - as a rough guide - aim for your T4 to be at around mid range with your T3 at a slightly lower level - currently your T3 and T4 are the wrong way round in % terms - as T3 should be tracking slightly behind the T4 :
Your TSH is very much under the control of your immune system at the moment and may or may not respond in the ' normal ' way - so track on the T3 - as this is the active hormone that runs the body - too high a T3 = hyper just as too low a T3 = hypo - though likely showing as ' in the range ' :
When metabolism is not running quite right for you - either too fast as in hyper - or too slow as in hypo - the body struggles to extract key nutrients through food no matter how well and clean you eat - and non optimal levels of ferritin, folate, B12 and vitamin D can compound your ill health further than necessary.
Some NHS ranges are too wide to even be sensible - and we need to be aiming for optimal to be well and we can explain ' where optimal maybe for you ' on any blood tests you may have.
As detailed above your T3 and T4 are in the range - BUT the wrong way round -
as normal means the T4 tracking at around mid-range with the T3 tracking slightly behind in percentage terms.
The Propranolol slows the conversion of T4 into T3 - so you need to first come off this beta blocker and see how your thyroid hormones react and why it has probably been suggested to increase the PTU - to compensate for the effects of the Propranolol.
With your TSH stuck down at 0.01 - and there having been no movement - I tend to think it's best to be cautious and not reduce the PTU just yet - since your immune system is likely still active -
Considering the NHS treatment plan with an AT drug is 15-18 months and the research - as already detailed suggests much longer - if well on the AT drug just play for time - there are no short cuts and it takes as long as it takes for the immune system to calm back down.
There is likely a genetic pre- disposition to Graves with a family member maybe a generation away from you with a thyroid health issue.
No two peoples journey with Graves is the same which makes it a poorly understood and badly treated AI disease though stress and anxiety tend to be common triggers and for some it can simply happen ' out of the blue ' like a car accident or the unexpected death of a loved one.
The thyroid is a major gland and responsible for your full body synchronisation from your physical through to your mental, emotional, psychological and spiritual well being and with Graves attacking your thyroid all or a few of these areas of the physical and psyche can be affected and in my experience mainstream medical have a very limited understanding of how devastating this phase of ill health can be for the patient.
The reference ranges for your fT4 and fT3 tests are what has made the difference to slowdragon's suggestions.
Her initially suggestion that you may need to reduce dose was based on an assumption that your fT4 / fT3 tests were done using the more common ref ranges we see, but now we see the actual ref ranges on the tests you had done , they show that your fT4, and especially the fT3, are still relatively high in range and you wouldn't want the fT3 to be much higher than it is now ... (which is what would happen if you reduced dose) .
Hence the best course of action is to stay on same dose and wait to see what happens after another 6 wks. ( if fT4/ fT3 fall lower then a dose reduction may be needed.... if fT4/ fT3 go higher then a dose increase may be needed... and if they stay at similar levels then dose may be kept as it is).
to illustrate the difference that lab reference ranges make to the interpretation of results and how it changes the advice offered :
Free T4 13.4 (7.9 - 16) 67.9% through range ... . is actually fairly good level
a more common ref range for fT4 is [12-22] ... and if this had been the test used , a result of 13.4 on that test would have only been 14% through range .. a very low level.
Free T3 5.7 (3.8 - 6) 86.4% through range... actually fairly high level (it's ok , but you wouldn't want it to go much higher)
a more common ref range for fT3 is [3.1-6.8] and if this had been the test used , a result of 5.7 on that test would have been 70% through range... not so high
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