Just had my results back and I'm just in normal range but still find walking uphill a struggle and don't feel brilliant but can function daily ok. Would I feel better if my T4 and T3 levels were in the middle of the normal parameters? Not sure what the TSH is indicating here either.
T4 12.6 (11-24)
T3 4.1 (3.9-6.8)
TSH 0.50 (0.35-4.5)
Figures in brackets are what my surgery says are normal levels.
Thanks for your help.
FT4 and FT3 should ideally be in the top third of range.
TSH under 1. But GPs like to see it in range.
Are you taking Levo? what dose and how long?
I started taking 25 levothyroxine in Feb, then progressed to 50 but my results looked like I was taking too much but I didn't feel like I was so my doctor consulted a consultant who asked if I was I taking a supplement with biotin in it, which I was, as biotin can affect results and look like you are hyperthyroid. So I stopped all my supplements and went back to 25. This has been going on for months due to waiting 8 weeks each time I have a blood test, changing brands, odd results, delays in blood tests etc. My doctor is just seeing that I am within normal range and so isn't recommending going up to 50 which I assumed I would do.
I notice from other replies that you previously declined radioactive iodine, and your previous 'hypo then hyper' episode settled down . Did you ever have the antibodies for graves disease checked (TRab), just asking because if you had Graves antiboodies it might have a bearing on your results on Levo now.
You TSH seems a bit lower than you'd expect given that your Ft4 is also quite low.
I'm pretty sure I was diagnosed with Graves and so would have the antibodies. I will see if I can find out. The TSH is low and that is odd compared with the T4. I am also menopausal so would that affect things ?
I don't think menopause would be an explanation for low TSH with low T4. (although it does often seem to mess up our previous stability in 'thyroid' land)I think that since you seem to have both Graves and Autoimmune Hypothyroid, your relatively low TSH is more likely to be 'something' to do with that combination, (but as to 'what' i'm out of my depth )
Personally i'd be wanting to use fT4 and fT3 and physical signs of over / under medication to adjust dose if i was in your position, and try ignoring the TSH for a while.
The risks of low TSH are long term thing's , i wonder if you could get Gp to have a 'trial' of a higher dose again to see what happens to your TSH,
it looks to me like your TSH is a bit 'broken' and you shouldn't be paying too much attention to it on its own.
How much lower than 0. 5 did it go when you were on 50 mcg , did reducing to 25 change it much anyway ?
I looked into the risks of low TSH cos mine has been lower than yours for years (0.05 ish)
I was satisfied the' risks' are not a concern for me unless TSH was below 0.04, and even then they are all relative to quality of life. However . the reason for my low TSH is obvious,( fT4 near top of range or often above it), but there does not seem to be an obvious reason for your TSH to be that low .
Were you on 50 mcg for long enough to know if it made you feel better than you do now ?
Can find you links to the paper on low TSH risks if you want.
Sorry this is a bit rambling, i started writing before my brain has woken up properly.
Thank for so much for your reply - all makes sense to me!
I didn't realise there were risks associated with a low TSH. I first started taking note of my test results when I went hyper in Sep 2011 and my TSH was 0.01 and it stayed that way until Oct 2016. Then in Nov 2017 it shifted to 0.04.
So in May 2020 T3 and T4 were 6.0 and 19.0 and TSH 0.02 and I didn't feel great but thought I needed more thyroxine not less although results show otherwise. That was when my GP sought advice. I had been on 50mcg for 8 weeks then. Not sure if I did feel better then or not!
In July it went down to 0.02 and then up again to 2.23 in August and I was on 25mcg then. Next blood tests were as above.
Yes agree best to ignore TSH results for a while as don't always correlate with what T3 and T4 are saying.
If you could find the TSH info that would be great.
Looked up tired legs walking uphill online and one site said one of the reasons for that is Graves disease so I'm going to research that further.
Thanks again
'risks'
of low TSH
If you look at the first reply to this post;
healthunlocked.com/thyroidu...
and click on the links contained in it , you'll find useful discussion and evidence on the subject.
hope it helps you make your own mind up . i think GP's just get the 'headlines', not the full picture.
Thank you!!
If you are not diagnosed and not on levothyroxine, these results won’t get you diagnosed
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
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 .
If/when on levothyroxine.........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
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Thank you for all that info. I just get tested by NHS but like everyone pretty fed up with lack of knowledge from GP's. I always ask them to make sure to test the T3 but I'm certain they would think I'm mad to ask for the vitamin testing. Been put off taking supplements now after what the consultant said about biotin. Seems like I should get private testing.
There's nothing wrong with taking biotin under normal circumstances - it can be found in many B Complex supplements for a start.
The problem with biotin is that some testing machines use biotin as one of the essential ingredients in their testing protocols. If the sample being tested has lots of biotin in as well it makes the results of the testing unreliable.
For more info on biotin see these two links :
healthunlocked.com/thyroidu......
healthunlocked.com/thyroidu...
The safest way of dealing with the problem is to stop taking biotin a few days before a test. There are various lengths of time that people are told to stop taking it and they range from a few hours up to a week. I tend to err on the side of caution and stop all my supplements for a week before testing (if I can do without them). If I was going to stop being cautious I'd still stop taking biotin for three days.
Yes, it was in a B complex supplement and I hadn't realised. I'm not taking anything at the moment as don't want to affect my results at all! But I now realise that i should get myself tested to see what I need supplement wise instead of just guessing so will research vitamin testing. Thank you very much for the info.
Hello there Lilacbunny
Looking back, on another thread, I read that you refused RAI - was this for Graves Disease and are you on any medication now ?
Many of my symptoms, including breathlessness when waking, were relieved when I had built up ferritin, folate, B12 nd vitamin D to optimal levels and I know now I need my ferritin up at around 100 for optimal conversion of my thyroid hormone replacement.
You would probably feel better with higher T3 and T4 levels but with TSH at this low suppressed level, if your doctor is TSH obsessed and following the guidelines you'll be more likely to be told you need to reduce your thyroid hormone replacement if taking any.
If you have Graves we can have very unreliable TSH measures and it's essential that we are dosed and monitored on T3 and t4 blood tests only.
If you don't know of the Elaine Moore Graves Disease Foundation website please dip in and read about all things Graves and equip yourself to become your own best advocate, as this does appear to be and poorly understood and badly treated autoimmune disease.
That's very interesting. I'm not on any medication for Graves. After refusing RAI and that route, I had acupuncture and my thyroid gradually came back to normal but I am now menopausal so maybe this is what made me hypothyroid again. I have Hashimotos as well which really kicked off after I had my daughter 15 years ago. That was sorted and then I had a hyperthyroid phase. I really don't want to reduce my dose but can see that I need to get my vitamin levels checked and then supplement as you say with iron etc. I will have a look at the Elaine Moore website - thank you for that. GP's knowledge is pretty slim with thyroid problems but it is a complicated subject!
Good morning ;
OK - if it was suggested to you to have RAI would presume you do have Graves Disease and you need to dig out the medical evidence for possible future situations.
We are looking at an autoimmune disease that is, in reality, for life, as it's in your blood and DNA and you need to be aware that Graves waxes and wanes, and can reoccur.
Well done for choosing an alternative option and pleased the acupuncture worked for you. Holistic and alternative options do play a big role in managing this AI disease and Elaine Moore writes widely on nonmedical intervention techniques.
You may still have antibodies " sitting on ' ( for want of a better word ) the TSH receptors - as by sitting on/ driving down the TSH - hyperthyroidism occurs - hence why the medics suggest removing the target of the attack - the thyroid, as the medics don't know how to remove the antibodies sitting on the TSH.
I had the RAI back in 2005 so I've no no thyroid gland to cause hyperthyroidism and am hypothyroid but I'm stuck with the Graves antibodies which are now part of me, and will distort my TSH and this is why it's essential that I am dosed and monitored on T3 and T4 blood test results.
However in primary care I found out that I was only ever dosed and monitored on a TSH blood test and my replacement dose reduced, not increased, and kept undermedicated for several years causing me to become very unwell and additional health issues.
I'm 15 years since RAI treatment ( which I would not recommend to anybody ) but my TSH has never recovered.
So what I'm trying to say is that in Graves patients the TSH is a very unreliable measure of anything and should not be used to dose/monitor thyroid hormone replacement.
I only learnt all this after becoming very ill in around 2014 and started reading up on Thyroid uk the charity who support this amazing forum and Elaine Moore's first book after my doctor referred to me as a conundrum and I had spent over 2 years on a NHS " not so " merry - go - round that found nothing wrong with me other than a low ferritin.
Hashimoto's expresses as " transient hyper " phases whilst Graves " hyper " is continuous.
With every Hashimoto's " swing into hyper " when the swing swings back it will have further damaged the thyroid gland causing your own thyroid hormone production to be erratic and reduced and you will need thyroid hormone replacement to compensate for the loss of production from your dying gland.
I would suggest that you find both the Graves and Hashimoto's blood test results showing the raised antibody medical evidence and proof of diagnosis.
Once on thyroid hormone replacement - Levothyroxine - most people fell better when both their T3 and T4 are in the upper quadrants of the ranges and you probably do need a dose as you are barely in the range for T3 and T4 but your TSH is low in the range, and you may well find difficulty getting one as doctors seem to just look at a TSH irrespective of any AI disease you maybe living and dealing with.
Graves is a poorly understood and badly treated AI disease so best try to get ahead of the game yourself and with the Hashimoto's throwing another spanner in the works you do need to try and find a specialist who knows " thyroid disease " and can support you.
Sorry, I seem to have gone on a bit, hope it makes some sense.
Yes, that makes lots of sense, thank you so much. It definitely refers to me. As I have been feeling ok up until about a year and a half ago, I hadn't done any more research or got any expert advice which I see from what you are saying I do now need. Thanks again.
Also. must just say I'm sorry you have had such a time of it and I'm very glad you are hopefully able to manage your health. You've obviously done a lot of research since your op. Hope you feel ok.
I haven't had any operation - my treatment for Graves was to drink the RAI - but just remember Graves is for life, whether you have had a thyroidectomy, or thyroid ablation this is an autoimmune disease, and as such, for life.
The only difference is that when your thyroid is removed/ablated and rendered disabled/ gone / defunct the symptoms expressed are not considered be life threatening.
However you will then be without a thyroid and hypothyroid and currently treatment for hypothyroidism is leaving many patients undermedicated, on the wrong medication, and dealing with life limiting symptoms.
Just inside the reference range….
Raised CRP and Ferritin - Thyroid levels ‘in range’
Feedback loop TSH/T4/T3
When replacing with T3 will T3 blood test results be higher than 'normal' range?
Does my endos comments make sense?
