I have just had a thyroid blood test, I have for some years been taking 100mcg daily of thyroxine. On 2 occasions my blood test results have indicated that I need to reduce my daily dose to 75mcg,but each time I had all my original symptoms return, so returned to 100mcg. However my last blood test reading result says my Serum TSH Level ( XaELV ) is below range, at 0.27miu/L ( 0.4-5.5 ) outside reference range. Does this again indicate my thyroxine dose is to high, I really do dislike changing my dose as I am fine as I am.I would greatly appreciate it , if someone could explain this reading to me Thankyou.
If it helps , serum free T4 level is 19.9 pmol/L
And my free triiodothyronine level is 4.4 pmol/L
Written by
jackrussell
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Well, we would need the ranges for the FT4 and FT3, but they look as if they should be in-range. So, no, you don't need to lower your dose.
Ignorant doctors dose by the TSH, but it's the best possible way to keep the patient sick. The most important number is the FT3 - if that's in-range, there's no problem - and the TSH is irrelevant once you're on thyroid hormone replacement, unless it goes high.
So, my advice would be to stick with that dose, if you feel well on it.
Thankyou very much for your reply . I have been told to repeat the blood test in 6 weeks,can you say if they are suggesting the reading is implying a lower dose or a higher one. I really hate having to "confront " the dr. Each time this happens,because lowering the dose makes me feel ill.
To get the best result our blood tests should be at the earliest possible time ,fasting (you can drink water). Allow 24 hours between your last dose and the test as this keeps the TSH higher and may prevent adjustment of dose.
We have to understand that they appear to know little about how to treat someone with hypothyroidism except make decisions according to the TSH and adjusting doses keeps us unwell.
If you feel well, that means no clinical symptoms, refuse to adjust your dose if you think its wrong and ask for an increase. We would have hyper symptoms if we took too much thyroid hormones and would probably reduce without doctors telling us to do so. The object of taking thyroid hormones is to relieve any clininical symptoms not to get the the TSH anywhere in the range.
That's why many of our members go-it-alone and get better.
They are suggesting you need a decrease, because the TSH is below range, and they are only looking at the TSH. They don't know enough about thyroid to understand that you aren't over-medicated because the FT3 is still in range (I imagine, but you must give the ranges. The numbers are meaningless without the ranges).
'I don't understand why they interfere with these things when there are no problems'
Because they were badly taught in med school - or they weren't listening at that point, or they were off sick on the afternoon they did the endocrine system... whatever, they know nothing - and believe me, I do mean nothing - about the thyroid. All they understood in class was that they should always keep the TSH in-range. And they think anywhere in-range will do. But we, the sufferers, know different. I can't remember which great doctor it was, but one of them said : the only specialist on a disease is the patient. But, most doctors are far too arrogant and full of their own self-importance, to realise that.
What shaws means by 'go it alone', is multi-faceted. First of all, you have to learn about your disease - yes, I know it's all wrong and we shouldn't have to do it, we should be able to trust our doctors, but the horrible truth is, we can't. Believe me, it's not difficult to know more than your doctor does! And, then, you have to take control. I understand you hate to 'confront' your doctor about your treatment - none of us like it - but it's that or stay sick. The choice is yours.
So, what do you do if your doctor won't go along with your new-found wisdom, and do the tests you know you need? Well, you get your own tests done. Your doctor is not as almighty as he would like to think he is. You can cut out the middle-man, so to speak, and get your own tests done. it costs money, of course, but what price health? The minimum tests you need are :
TSH
FT4
FT3
TPOab
TgAB
vit D
vit B12
folate
ferritin
(details of private testing on TUK main page)
When you've got all those tests done, you will have a better idea what's going wrong, and where to intervene. Hypos often have nutritional deficiencies, and yet, we need optimal nutrients for the body to be able to use the hormone we're giving it. But, you will not get any help from your doctor on that! They know even less about nutrients than they do about hormones!
And, third facet of 'going it alone' is buying your own supplements and treating yourself. And, you can even buy your own levo, T3 and NDT on-line, and decide your own dose according to your own test results.
It's hard, I know. And it's a hard truth to face when we realise that we're on our own with all this. But, that's the way it is, I'm afraid.
Thankyou for your very informative reply, I wasn't aware of all these other avenues that are open to us and no idea that we could get blood test or medication on line.
I also have Vasculitis and that is another up hill struggle. I am usually " on the ball " on most things,but when you don,t feel well it can be a bit daunting,
I have long since felt ( and Have had proof of it ) with my gp that the attitude is , If I can,t cure it you haven,t got it.
Will I be able to find the websites that have the medications avaible,and is a prescription needed ,because after reading these extremely helpful replies there is no way that I am going to accept a lowering of my prescribed thyroxine.
Again Thankyou so much to all that are giving me advice,it's certainly an education,It's a very lonely road sometimes with these illnesses ,and I am very grateful for your help.
I'm not sure, but I think there is a connection between Vasculitis and low thyroid. Certainly, having low thyroid won't help! It doesn't help anything.
The first thing to do is to get proper testing. You can find details here :
Then, you can decide what you need to take. If you post all your results on here, with the ranges, then members will be able to advise.
If you're ok on levo, then that's the easiest thing to take. But, you might decide you want to try something else. Whatever you want, write a new post, and ask for people to PM you their tried and trusted sources. Usually, without a prescription.
Thank you. My GP didn't believe that Levothyroxine was absorbed by food! Also during a recent stay in hospital Levothyroxine was administered to patients during the drug round AFTER breakfast. Despite my complaints and subsequently everyone else they looked it up, found should be taken half hour before food and then continued with their normal practice!
It isn't absorbed by food, it binds to certain nutrients, like calcium and iron, so you don't get your full dose.
In a French hospital once, the levo was handed out with breakfast - breakfast being a large bowl of milky coffee! Thank goodness I was only in there for three days!
It's better to wait a whole hour, rather than half an hour.
How do you mean "go it alone ". I will certainly be insisting that my dose is not changed I don't understand why they interfere with these things when there are no problems. Thankyou for your reply.
under the box on the right headed 'Recent News' is a small box marked 'Diagnosis and treatment of Hypothyroidism' with a link to a recent document which you may find useful / interesting.
On page 2 the authors suggest
"If hypothyroidism is diagnosed, the patient’s FT4 and FT3 levels should be increased enough to eliminate signs/symptoms of hypothyroidism without creating signs/symptoms of hyperthyroidism.11 TSH should not be used to determine the medication dosage."
It may be difficult to get your GP to look at that. Unfortunately they seem to stick to what they were told when they were students. GPs who really understand are few and far between.
This is a link re vasculitis and hypothyroidism. The only active thyroid hormone is T3. Levothyroxine is T4 and is inactive and converts to T3 so we should be at an optimum level of FT3 to supply our billions of receptor cells. Our brain contains the most and our heart definitely needs sufficient.
The problem with doctors is that they knw none of the clinical symptoms. When they believe we're on sufficient dose due to TSH stop increasing and then give us 'other' medications for the symptoms which arise.
If it helps, my TSH has been 0.01 for years and I still have symptoms... TSH doesn't mean diddly squat, even with low TSH you can still have symptoms. Only doctors are not aware of this because they are not taught this in med school and they (most of them anyway...) don't listen to doctors... Sigh!
In your situation I would certainly refuse to lower the dose. My TSH is lower than yours, but I am only just managing to get enough medication. I did once cave in to the GPs insistance that I should drop my dose, and I spent 6 months feeling very hypo. Luckily, they didn't change my repeat prescription, and I just told them that the "trial of a lower dose" didn't work, so I would carry on with my "normal dose".
I was lucky because if they had recorded a permanent change, I may never have got back to my original dose. It is best to never agree to a drop, but if you think you need to try less, do it without agreeing to drop!
For the last two years, I have been taking the dose they said was too high, PLUS T3 that I buy online. Now my TSH remains the same, but despite having no thyroid gland, my FT4 has dropped from over range to mid range, and my FT3 is slightly higher instead of below range. (The T3 seems to have stimulated better conversion of T4 to T3.)
We all have to learn as much as we can about thyroid hormones, so that we can take as much responsibility for our treatment as we feel able. Left in the hands of doctors (GPs or endos), we stand a good chance of being kept unwell.
Guess by now 2 years later you have learned that T4 isn't inactive and is involved in the methylation process and needed for mitrochondria and energy. It doesnt just convert to T3 or reverse T3.
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