I’m looking for a bit of advice as iv posted on here before and members/admin have always been very helpful.
I was diagnosed with an underactive thyroid over 10yrs ago. I have hashimotos so my levels don’t seem to stay normal for long. I assume that’s the hashis? Anyway, I was on 100mcg of Levo but still feeling tired/achy joints, they tested my TSH which I know those figures alone don’t tell an awful lot with all the other readings but my TSH was around 3.5. In the past when they upped my dosage to 125mg iv ended up going hyper very quickly so they suggested just doing 125 3 times a week and 100 on the other days. That’s what I have done the last 2-3 months but my latest test results show that I’m hyper again. My problem is that apart from a few night sweats I have felt so much better so really don’t want to drop back to 100. However my doctor has said that I must reduce the dose then retest in Feb. I’m baffled as when I’m just on 100 my levels are off but just 3 days a week on 125 my levels go into overdrive. I really don’t want to drop the dose as I do feel so much better…I have 1 pack of 25’s left and I’m tempted to just take one a week as a little boost. Any advice that might help with my little conundrum?
T3 is 5.3
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Henson1980
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Your TSH might be slightly below range but your results are not showing that you're hyper or over replaced.
Your FT4 is only 55% of range and no FT3 result. So long as free hormone results are within range then TSH doesnt matter, although most doctors dont understand this.
What time of day was your test taken? Highest TSH is at 9am or earlier.
Are you testing and supplementing low vitamin levels?
What are your latest results for ferritin, folate, B12 & D3?
Your GP needs to take your wishes and opinion about your results into consideration. Do show your GP this and you can take responsibility for your low TSH.
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “
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)
is this how you did your test
Do you always get same brand levothyroxine at each prescription
Exactly what vitamin supplements are you taking
ESSENTIAL to test and maintain GOOD vitamin levels
Night sweats suggests low B12
joint pain low vitamin D
Testing options and includes money off codes for private testing
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week 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
Thanks slow dragon I tested before 9am on an empty stomach only water and stopped takin Levo 24hrs before. I made sure I stopped biotin a week before as I know this can affect results. I take vid d, but b complex and selenium xx
Wow that’s really interesting…I feel so let down by my doctor, since iv reduced back down to 100 I feel like my energy has been zapped! She wants to wait until Feb to review me which means a good two months of feeling like this! If my own doctor doesn’t understand my thyroid results then what hope do I have 😩
Suppose a test is done on X and the result is 20 with a reference range of (10 - 30)
That means that, according to the lab that did the test , they expect all healthy people to have a result for X of 10 - 30. And with a result of 20, which is half way between the bottom and top of the range, i.e. half way between 10 and 30 your result is 50% through the range.
If your result was 25 with the same reference range then it would be 75% through the range.
If your result was 15 with the same reference range then it would be 25% through the range.
Now suppose you had X tested at a different lab and with a different machine. The reference range for this different machine is not the same as the one in the first example. It is (20 - 60), and your result for X is 40. How do you compare results from two different machines with two different ranges and two different results? In other words, how can you compare result one 20 (10 - 30) and result two 40 ( 20 - 60)?
You can't say that your result for X has risen from 20 to 40. It doesn't work like that because the reference ranges are completely different. A result of 20 (10 - 30) and a result of 40 (20 - 60) are both 50% through the range, and therefore are identical results and they haven't changed at all.
I've used simple numbers for a made-up example but comparing results for real tests with real reference ranges is a tad more complicated in terms of arithmetic. So we have two links that will do the arithmetic for us. You can try both and use whichever you prefer :
If I stick the numbers for your Free T4 results above into these two calculators I get that your result is 55.41% through the range.
For your Free T3 I get that your result is 40% through the range.
The next time you get tested if your Free T4 is 54.8% through the range and your Free T3 is 42.1% through the range you can tell that your results have hardly changed. But if your Free T4 is 27.6% through the range and your Free T3 is 23% through the range you can see at a glance that your results have dropped dramatically since the previous test, even if the reference ranges have changed a lot.
Thank you for putting that in layman’s terms for me…maths really isn’t my strong point which is why I think I find it hard to make sense of the figures. I plan to go back to my GP and use some of this information to make a case for not reducing my meds. Iv been on my lowered dose for a week now and feel like my energy levels are now depleted! I just wish I could put this across to her in a way that makes sense 🙈
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
Hi, sorry to throw a spanner in the works. Could you possibly be perimenopause with having night sweats and body aches. It also made me think, if your username is your birth year, then that about at the right age. It's so difficult when both thyroid and peri/ menopause can have similar symptoms
HRT frequently results in needing change in dose of levothyroxine. Usually an increase in dose
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who are aware TSH can be low and look at Ft4, Ft3 instead
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Hi Henson, use the info in the two posts below to argue for dose to be put back to previous , have a read through both of them and check out the research :
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
T3 treatment advice
Update I had a discussion with the endocrinologist today I think I need to be more assertive next time . Will I NEED T3 
Lab results - dosing query
doc wants to lower my thyroxine 
