Hi all, first time poster here, so glad I found this forum
I have lived with thyroid problems since I was 31, am now 52 and peri-menopausal (take HRT). Back in my 30's had Graves Disease and had radioactive iodine treatment, which left me underactive and have taken 75mg thyroxine ever since.
Recently have been experiencing a real mix of symptoms both hypo and hyper including; weight gain, apathy, bloating, changes in bowel movements, pins and needles, loss of motivation, weakness in muscles.
Asked for thyroid review and got the results above (TSH level 0.2 and serum free T4 level 21.6) can't seem to find out if this means I am overactive thyroid or underactive and whether I should be asking GP to alter my thyroxine dose?
Other blood results are:
Serum ferritin - 49 (in range)
Serum folate - 15.1 (in range)
Serum Vitamin B12 - 279 (in range)
Serum Sodium - 140 (in range)
Serum potassium - 4.7 (in range)
Serum urea - 5 (in range)
Any advice appreciated, as I know in myself I just dont seem right and am not my usual self.
Looking back at older blood test results my TSH level was 0.06 in December and 0.01 in September last year.
Thank you for reading and for any advice
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Catmomma1
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Do you have lab ranges for your results. Lab ranges can vary between labs so need to accurately interpret results.
The FT4 (free thyroxine) looks high by most ranges. It might be just within the upper limit which I why dr has thought it’s acceptable.
Low TSH can be a sign you are over medicated & but TSH can be unreliable for many reason. most doctors reduce levo if TSH low.
Your FT3 hasn’t been tested & the FT3 is the active thyroid hormone. Sometimes conversion is poor and you can have high FT4 and low FT3. Many use private test as NHS don’t routinely include FT3.
Recommend tests are taken early in morning, fast overnight, cease any biotin supplements 3/7 days before tests, as has potential to interfere with test & delay replacement until after draw.
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days 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 if last test result serum B12 was below 500 or active B12 (private test) under 70
Please add the ranges to any blood test result - as ranges are not standardised ;
Ok - so you have Graves Disease and went through RAI thyroid ablation 20 odd years ago:
RAI slowly burns out your thyroid in situ - there is no knowing how long this actually takes but ultimately your thyroid will be burnt to a cinder and you will be totally reliant on thyroid hormone replacement.
With Graves post RAI thyroid ablation the TSH is a very unreliable measure of anything -
and you must be dosed and monitored on your Free T3 and Free T4 thyroid blood test results.
Sadly in primary care I think your doctor can only get a TSH and an occasional T4 reading so his management of your treatment is all but a guess.
rcpe.ac.uk/sites/default/fi... - please see this link - and go to page 3 - top left hand side paragraph, 1/3rd down and the sentence starting -
' I am so concerned ' - basically what this is saying is that :-
Your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH relies on as working well is now broken - and the TSH is now meaningless - and not a reliable measure of anything -
You have had a medical intervention and your body physiology changed - and your internal feedback loop is now open ended as you have no thyroid in situ to complete this circuit loop.
Your T4 is high and likely just in / or out - of its range and you will probably face a dose reduction on your T4 - Levothyroxine - which in turn will reduce your T3 reading -
and it is too low a level of T3 that causes all the symptoms you are already tolerating.
It's impossible to say what is going on - from such limited information and the minimum we need is a TSH + Free T3 + Free T4 blood test result and range :
You can't be over active as you have no thyroid - but you most likely are being wrongly medicated with your T3/T4 thyroid hormones not balanced and your metabolism not working as well as it once did.
RAI is also known to trash vitamins and minerals - amongst other things, and we need optimal levels of ferritin, folate, B12 and vitamin D to enable any thyroid hormone to work well -
Being ' in a range ' is not optimal - and some ranges are too wide to even be sensible -
I am with Graves Disease and post RAI thyroid ablation 2005 - and I now know I need to aim to maintain my ferritin at around 100 - folate at around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.
If you go into Thyroid uk - the charity who supports this patient to patient open forum there is a whole page of Private Blood test companies who can run the appropriate tests if your doctor is unable to help you further - thyroiduk.org
Do you always arrange an early morning by 9.00am fasting thyroid blood test and leave around a 24 hour window from your last dose of T4 - Levothyroxine so we measure what your body is holding and not that just ingested ?
You might like to read the most recent research :-
The most rounded of all I researched when I became so much more unwell some 8/10 years after RAI thyroid ablation is that of Elaine Moore books and now archived website -
Thank you for your replies PurpleNails pennyannie & SlowDragon
Here are the labs ranges:
TSH - 0.49 to 5.23 - my result 0.22
T4 - 11.5 to 22.7 - my result 21.6
Ferritin - 15 to 200 - my result 49
Folate - 4.6 to 18.7 - my result 15.1
B12 - 211 to 911 - my result 279
My blood test was done at 9am in the morning and I hadn't had anything to eat just water to drink, I had however taken my levothyroxine at 7am as I usually do as was not aware not to take it. I have had the same brand of levothyroxine for a long time.
I have an appointment with the nurse in May, apparently the GP no longer deals with hormone issues and we have to see the nurse now. When I see her I will ask for bloods to be redone to include T3 and vitamin D, if she cant do that then I will order private tests. In the meantime should I start taking vitamin B supplements? I currently do not take any vitamin supplements other than NMN .
Thank you, I bit the bullet last night and ordered Medichecks full thyroid and vitamin blood tests so I can go to my appointment armed with upto date results.
Ok then - yes - good idea - as it's an uphill struggle with the NHS just to get the appropriate blood tests - and all so stressful -
My surgery agreed, reluctantly. to run the T3 and T4 blood tests after I plucked up the courage to stay, sat, in the chair in the doctors room and the Laboratory were phoned and confirmed they would do them !!
Mind you once with the results the NHS didn't acknowledge my problem -
low T3 / high T4 - and after wasting another 12 months trusting the NHS endo would treat me, as promised, I decided to do it for myself in 2018 and am much improved.
Arrange the appointment for either a Monday/Tuesday morning by around 9.00am so the sample isn't left over the weekend in a post box or Laboratory congealing.
Stop any supplements and anything containing biotin for around a week before the blood test and leave around a 24 hour window from your last dose of T4 - Levothyroxine.
Once with the results simply start a new post with all the results and ranges and you will be talked through what it all means and your next best steps back to better thyroid health.
The NHS are not obliged to accept Private blood test results but depending on your doctor it can force their hand to run the appropriate tests themselves and put you in the ' NHS system ' and then await the computer prompts for the necessary action.
Well, yes. when I had back my results and could see very clearly my issues and then with some support from forum members here, I was able to start taking back some control for myself which was liberating and far better then staying in a system that kept rather than keep getting sidelining me.
If you read around on this forum you'll find you are not alone -
and you can read anyone else's thyroid journey by simply pressing on their icon which sits alongside their user name in any post / comment they make and will take you to their Profile page and all theyhave ever written on this forum.
If you get lost reading around simply press your Profile icon which sits on the task bar where the Alert bell icon sits.
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