I’m hypothyroid ( after graves 2006 and taking RAI) - I was taking 125mg levothyroxine per day. The last 6/7 years I’ve been feeling awful, mood and low energy, stabilised weight, could never lose weight unless I starved myself.
My GP referred me to a endo last year. After lots of tests, cortisol etc etc my tests showed I had a high range of thyroxine but could explain my symptoms which I found a surprise.! All other tests normal.
The endo lowered my levothyroxine and I felt much better but have gained weight? This also could be due to Covid and sitting at home a lot. I try and walk 10,000 step per day.. I’m the heaviest I’ve ever been.
Why do I feel better lowing my levothyroxine??. I’m now taking 100mg mon - fri and 125mg weekend.
Test results ( 125mg )
8th June 2020
TSH - 0.04 ( 0.35-4.78)
T4 19.4 ( 10.0-20.0)
T3 5.3 ( 3.5-6.5)
Lowered thyroxine 100. /125 alternative days
TSH- 0.4 no range
T4 - 18.7 no range
T3 - they didn’t test
Now I’m taking 100 weekdays & 125 weekends.
I’m due another blood test this week- If my levels are low that could explain my weight gain in a matter of 7/8 months.
Any advice would be appreciated!
Written by
yolobrass
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Obviously just testing TSH and Ft4 is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
It’s really frustrating I always ask for a full thyroid panel when testing, I even adjust the form but always comes back with TSH and T4 only.
I take Vit D, B Complex, selenium, magnesium and Zinc.
I have had tests done and I’m not coeliac. I follow an non gluten diet.
I just wondered if low TSH on Levo can cause weight gain? Or Covid lockdown moving less- just confused as to the cause. It’s frustrating that all my favs face appointments have been cancelled too...
Levothyroxine is T4 and T4 converts to T3 and reverse T3 (rT3) which stops T3 working. Lowering your dose can lower your rT3 which will increase uptake of T3 into your cells. You need your rT3 level check.restartmed.com/thyroid-lab-...
Reverse T3 is unconverted T4 - and the body's natural way not to convert too much T4 to T3 :
I guess you could look at it as the body's way of not letting you boil over -
Think of the valve on a pressure cooker, that you can adjust during the cooking procedure : or simply manually lifting off the lid when something's going to boil over :
You have Graves Disease and when first diagnosed you will have probably had high over range T3 and T4 levels and undoubtedly high reverse T3 numbers from the unconverted T4.
Graves is said to be life threatening in some people and your body put it's own brakes on your conversion, and to save you becoming more ill with higher T3 switched the surplus T4 into reverse T3.
We all have some reverse T3 - it's something we all have as the body adjusts itself to it's needs throughout the day and overtime your high reverse T3 numbers should have slowly come back down into range.
the theory that rT3 (reverse T3) blocks T3 (active hormone) from getting to thyroid hormone receptors is an old one which has since been updated. It used to be thought that rT3 attached to the same receptors as T3 inside the cell , but it is now known that it cannot attach to those receptors .
It does attach to thyroid hormone receptors on the outside of the cell, but this does not stop T3 getting to the receptors inside the cell.
An rT3 test is relatively expensive , and doesn't tell you anything that can't be seen from looking at fT4 and fT3 results,, ie. fT4 is high /over-range , so this may cause high rT3 levels . and if levo dose is reduced , rT3 levels will likely reduce.
But other than the suggestion to consider reducing dose due to high fT4 level, the rT3 test can't tell you what else could be the cause of high rt3... there is a very long list of possibilities, most of them nothing to do with thyroid hormone, so to me it doesn't seem worth the high cost of the test for most situations.
rT3 should be low, it is affected by how much T3 you have, but also rT3 can be high regardless of how much T3 you have. The links I posted above has information on T3/rT3 ratios. My endo and many GPs never mentioned rT3 or tested it!!!! I had my first test for it today and I have all the hypothyroid symptoms despite 200mcg T4 Levo and 10mcg T3 Liothyronine.
If you check out the Thyroid UK website, scroll up this screen, and you'll see their logo and members numbers and you'll see you are not alone in all these thyroid health management issues.
Thyroid uk are the charity who support this amazing forum and you will find details of private companies who will run the blood tests for you.
Simply post the results and ranges back up on here and you will receive considered opinion and suggestions how you can turn things around for yourself.
Weight gain is a classic hypothyroid symptom and results from your metabolising having been slowed down too much.
Too high a level of T3 and you may have hyperthyroid symptoms and too low a level of T3 and you may well have symptoms of hypothyroidism.
There is no T3 in your last set of bloods so can't saying anything about those results but in your previous set from last June your conversion is good coming in at around 3.70 ;
The accepted conversion ratio when on T4 only is said to be 1 - 3.50/ 4.50 - T3/T4 - with most people preferring to be around 4 or under :
So to find your conversion ratio you simply divide your T3 into your T4 blood test result and that comes in at around 3.70 - optimal vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D need to be maintained as these contribute to your body's ability to convert the T4 which is a prohormone into the active hormone T3 - which is the hormone that the body runs on.
A fully function working thyroid would be supporting you daily with trace elements of T1.T2. and calcitonin plus a measure of T3 said to be at about 10 mcg plus a measure of T4 said to be at about 100 mcg. T3- synthetic Liothyronine is said to be about 4 times more powerful than T4 with the average person needing to utilise around 50 mcg T3 daily just to function.
So as you will see from the above, having lost your own natural T3 hormone production you have, in effect been down regulated by some 20% of your overall well being, and no matter how hard your body tries to compensate, overall your health and well being maybe jeopardised.
Most people feel at their best when their T3 and T4 are balanced and generally when both thyroid hormones are in the top quadrant of the ranges.
If you look at your June results your T3 was at around 60% and your T4 at around 90% and you may find to balance these out - a little T3 - synthetic Liothyronine would do the trick.
I just think that if there has been a medical intervention, either surgically or RAI ablation that both these essential, vital hormones need to be on the patient's prescription for if, and probably when, they will both be needed to restore good health and at a high enough level in the ranges to be acceptable to the patient.
I'm with Graves post RAI thyroid ablation in 2005 becoming very unwell in around 2014 and then after over 2 years on a very unmerry NHS merry go round started reading up myself on Graves Disease and Hypothyroidism and found myself on this amazing forum.
I failed to be prescribed anything other than T4 - Levothyroxine through the NHS and I now self medicate and am so much better it simply defies my understanding of the NH service.
i understand how you feel as i also have to starve myself and take great amounts of exercise . my weight gain is unreal and it has been like this for 5 years
i have never received any solid advice from the NHS frankly i used to cry at not being able to wear my beautiful clothes and having my identity stolen. you just have to try more exercise thats all but the weight gain does not seem to shift for me. they have recently lowered my dosage and i feel terrible so its back to the drawing board , one long battle month after month year after year good luck with getting an answer
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