I’m new here but I’m far from new with thyroid difficulties 😩
I have just received my new blood results which is -T4 level 13.9, Serum TSH 0.09 and T3 is 4.9
The doctor is seeking advice from consultant in regards to decreasing my medication however I feel this is the most stable my t3 and t4 have ever been. I constantly fluctuate with my thyroid levels. Have done for 12 years now. It’s never been stable for longer than 3 months.
Would anyone on here consider that to be reasonably normal?
Many thanks
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Nello20249
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Could you add the reference ranges for each test? Ranges vary from lab to lab so are important to quote - numbers in brackets after your result number.
What hormone/s do you take?
There are a few tips that fellow patients can pass on to you. As our dose is decided by blood results its important to standardise how we take a blood test each time.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
I'm afraid we're not going to be able to comment without the ranges for those results. Ranges vary from lab to lab, so we need those that came with your results to be able to interpret them. But, on the face of it, it rather looks like your doctor is only looking at the low TSH, and wants to reduce your dose to bring it into range. Which is the wrong way to dose thyroid hormones.
I feel this is the most stable my t3 and t4 have ever been. I constantly fluctuate with my thyroid levels.
The aim of thyroid hormone replacement is to make you feel well, and stability is not really a consideration. Do you feel well on your present dose? If so, your doctor should not be changing it just because of the TSH!
Do you have Hashi' - high antibody levels? If your thyroid hormone levels constantly fluctuate then it rather sounds as if you have. Either that, or your doctor has been dosing by the TSH all along.
I have always had the negative side affects with thyroid. I take 225mg levo - even when it says on paper it’s stable ,I still suffer with the dreadful tiredness and brain fog! Along with the rest!
I feel for the past 4 years I’ve been fobbed off by GP. They don’t listen to my symptoms and they tell me I wouldn’t be able to physically feel when my thyroid is low but I really can feel it within myself that I’m not right.
If I do have hashi- what is the treatment for that?
Will hashi always give my bloods an out of baseline result?
Well, you're certainly not over-medicated according to these results. Both thyroid hormone levels are well within the ranges.
But... How did yo do the test? Did you leave a gap of 24 hours between your last dose of levo and the blood draw? And was the blood draw before 9 am? It's strange that the FT3 is higher in range than the FT4.
And, how do you take your levo? Because it doesn't look as if you're absorbing it very well. One would expect the FT4 to be higher than that on 225 mcg. Do you take it on an empty stomach and leave at least an hour before eating or drinking anything other than water? Do you take any other medication/supplements at least two hours away from levo?
I take the medication first thing in the morning around 6-6:30am religiously. I will not eat or drink coffee until around 8:30 when I leave for work. Do you think that coffee could be playing a part in absorption? I do take other supplements like vitamin d, iron , biotin and collagen but I take them around lunch time (12-1pm) with food.
Never had an anti body test however that will be my next move with the GP.
I’ve learnt so much from this site in 30 mins than I’ve have from any consultant or medic involved in my care!
That is because on this forum we know more than any consultant or medic! They just don't learn much about thyroid in med school, I'm afraid. They know next to nothing. Wereas our lives depend on knowing what we're doing.
OK, so you're taking your levo the right way. Coffee does affect absorption - it also affects TSH levels - but not after two hours.
One point about your supplements, though. You really shouldn't take iron with everything else because it blocks absorption of other nutrients. Iron should be taken two hours away from everything except vit C. And it's essential you take vit C with it because it helps absorption of the iron and avoids constipation. Iron should be taken four hours away from thyroid hormone.
sorry I missed a section. This I’m very mad at my GP because I once asked about taking morning medication before a blood test and he’s always reassured me to take my dose before as it will not affect the results etc.
I always have my bloods done first appt around 8am.
Thank you for that advice. I’m due Monday for bloods. I will follow your guidance and see if that changes my results.
Oh lord! Your GP is really very ignorant! How can it possibly not affect the results??? It goes into your blood. The take a sample of your blood and it's full of the dose you just took! So, that explains the high FT4! But not the high FT3. Are you sure those numbers are right?
And, I'm afraid, there's no wriggling out of that low TSH. Although that doesn't matter to anyone except a doctor! Doctors are terrified of low TSH, and always want to reduce your dose even if your results are crawling along the bottom of the range. They just don't understand how it works! All you can try and do is convince him that it doesn't matter. Low TSH will not give you a heart attack, nor cause osteoporoiss, which is what they believe.
That's a difficult question to answer. And first you would have to answer the question: what is normal? Ranges are based on the machine the lab uses and the average levels of the population in the area. They are unlikely to be 'normal' all the way through because you are bound to have a certain number of people with undiagnosed thyroid problems. But, a 'normal' (euthyroid) FT4 would be around mid-range, with the FT3 slightly lower. So, your FT3 is most definitely abnormal for someone not taking supplementary T3.
A euthyroid TSH is around 1, but in hypos it's usually lower because they need their thyroid hormone levels higher than a person with a healthy, working gland. Plus the feed-back loop (from the hypothalamus to the pituitary to the thyroid and back) no longer works correctly.
But doctors understand nothing of all this, and base their considerations around TSH levels - which they don't understand either. So, we have these uneducated dictators in charge of our health and often making us sicker - I've never seen a doctor that didn't make me worse, rather than better. So, little wonder so many of us self-treat.
Yes, it is liothyronine. And it can be very difficult to get it prescribed because doctors don't understand what it is and it terrifies them!
How long ago did you see this endo that told you you'd have to pay for your T3? Things have changed recently because, as you said, prices have dropped. So, it might be worth asking again. Although, to be honest, it's not what you need at the moment because your FT3 is high - your blood test result even looks like you are taking T3! So, frankly, that is not the right route to take right now.
Your next step should be getting your antibodies tested to try and find out why you're hypo. And, if it does turn out that you have high antibodies, and therefore Hashi's, that could be the cause of your high FT3. So, that would give you a clearer idea of where to go next.
My next plan of action is to ask GP about anti bodies blood test.
Would you advise my dose be kept at 225? I do feel some improvements although still symptomatic. GP wanted to lower the dose last time but consultant advised a repeat blood in 1 month time before any adjustments to medication.
Given the level of your FT4, yes, I would stay on that dose, until you find out why you're not absorbing it very well. Your GP only wanted to reduce it because of your low TSH, but that is NOT how you dose thyroid hormones.
When you do that next test, make sure you do it correctly - i.e.
- gap of 24 hours between your last dose of levo and the blood draw
- early morning blood draw, before 9 am
- have breakfast after the blood draw.
Be interesting to see what your FT4/3 levels are when done like that.
Would this be medication named liothyronine? I have inquired about this to the endocrinologist however it’s too expensive on NHS. He informed me I would need to pay private for this if I wish to pursue that treatment. Which was around £500-800 per month!
However, I am aware from reading this forum that the pharma company recently got into some bother with over charging and I believe they have now lowered the price? I will explore this during my next contact with GP/Consultant
I really can't answer all your questions because you haven't given the ranges for your results. But, quite honestly, 'stable' has nothing to do with anything if you don't feel good.
If you don't feel good on 225 mcg levo, then it sounds as if you either aren't absorbing it very well, or you are a poor converter of T4 to T3.
T4 (levo) is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. But we're not all very good at that. But I can't tell how well you convert without the ranges.
Doctors are not interested in symptoms - they don't even know what most of them are! And they're not interested in how you feel. They are only interested in your TSH level. Rediculous, but there you are. And your doctor really is a muppet if he thinks people can't tell when their thyroid levels are off! Of course we can. And do.
Hashi's - aka Autoimmune Thyroiditis - is an autoimmune disease where the immune system slowly destroys the thyroid, mistaking it for the enemy. It is diagnosed by testing antibodies: TPO and Tg antibodies.
It cause fluctuations in levels because during an immune system attack, the dying cells release their stock of thyroid hormones into the blood, causing levels to rise and the TSH to drop. But doctors know nothing about that and often don't test antibodies because they can't see the point.
That is probably because there's nothing you can do about the immune side of the disease, all you can do is replace the missing hormone, just as you would for any other form of hypo. So, you're on the right treatment, it's just that your doctor doesn't understand how to regulate it.
But, if you want to know more we need to have those ranges (numbers in brackets after your results - e.g.:
Goodness what a thing for your doctor to say… you can’t feel when your thyroids not right?? We need a few more doctors with thyroid problems then we may get a better understanding. So sorry Nello, trust your judgement you know your body. I won’t say much on your results as many on here know more than me but if you’re on such a high dose then it seems somethings not working right? I’ve been fobbed off for 20+ years and only now getting to grips with how complex this really is, so fight for yourself to be heard 🤗💜
It’s awful isn’t it. It was the endocrinologist who told me that! Someone who allegedly specialised in thyroid dysfunction 🙈
It’s a very high dose and over the years it’s like my thyroid has deteriorated slowly. GPs can only manage 200mg of levo from reading NICE guidelines which I will query with them on my next appointment
I’ve honestly learnt so much from this page!
Thank you for your kind words, I will keep you all posted ❤️
Hi Nello
I noticed that you take biotin, I was advised by this forum to stop taking it several days prior to your blood test because it can affect the results
First step is to get FULL thyroid and vitamin testing
Likely low vitamin levels and/or high thyroid antibodies (hashimoto’s)
Request GP test vitamin levels and thyroid antibodies
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine are you taking
Do you always get same brand
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
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