I was diagnosed with Hashimoto's around 18 years ago but kept on 50mcg of thyroxine for 4 years which left me very poorly. I went to see a private endocrinologist who put me on T3 and told me to gradually increase my T4 and for a few years I was on 150/175mcg T4 and 10mcg of T3. My TSH during this time was 0.05 and my T4 reading at the upper end of the range. I was taken off T3 about 3 years ago but found I was okay on 150mcg of T4 and my TSH was no different. I am now 54, nearly 55, and have gone through the menopause. On my last thyroid check my T4 was above the reference range so I was asked to reduce my thyroxine dose to 125mcg but, after testing 8 weeks later, my T4 had risen further and my TSH was the same. I've now been on 100 mcg since November and my recent test shows that my T4 is 22.9 and TSH is 0.01. I'm just wondering why this is happening when I am reducing my dose of thyroxine? I know that we possibly need less as we get older but I'm loathe to drop my dose any further which I fear is what I will be asked to do. I have been under a lot of stress over recent months and wonder if this could be affecting the results?
Any advice or suggestions would be most welcome.
Thank you.
Karen
Written by
klr31
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Are you leaving a 24 hour gap between your dose of levothyroxine and the test? Are you also fasting (you can drink water)?
The worst things doctors can do is to adjust our dose in order to try to 'fit' the TSH or T4 etc into a range.
Doctors or endocrinologists have lost the skill of diagnosing patients without the need for blood tests but taking account of their clinical symptoms and the relief of them. We used to also get prescribed NDT which was the only replacement at that time. It contains all of the hormones a healthy gland would produce.
If I were you I would get a private blood test and there are three labs : Thriva, Blue Horizon and Medichecks:-
They are home pin-prick finger blood draw and it has to be at the very earliest, fasting and a gap of 24 hours between last dose of levo and test. Make sure you are well-hydrated a couple of days before blood draw and hands/arms warm.
You need a Full Thyroid Blood Test which is:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
It's a pity that the medical profession seem to believe that a TSH and T4 are sufficient. They should take more notice of relieving clinical symptoms but I doubt, these days, they know any.
The aim is a TSH of 1 or lower and FT4 and FT3 in the upper part of the ranges. The latter two are rarely tested.
GP should also test B12, Vit D, iron, ferritin and folate and everything has to be optimal.
Levothyroxine (T4) is an inactive hormone and has to convert to T3 - the active hormone and we have millions of T3 receptor cells that need T3 in them so we have to have an optimum dose of levo and the ability to convert it to T3.
On Monday I had the test at 8.20 so I had been fasting for over 12 hours as I had cholesterol checked too. I know I'm going to have a battle to keep my dose as it is and yet I don't want to lower it further. I know I probably need less thyroxine now but am unsure why my blood tests are as they are, unless it's the stress I've been under. The doctor thinks this cannot be the cause but I'm not so sure.
Are you feeling well on your present dose. If so I would refuse to adjust it. If I were you I'd get both Free T4 and Free T3 tested because if either aren't near top of the range we wont feel too good. I shall give you a link which may be helpful.
I'm feeling okay at the present dose but not as good as I was when I was on 150mcg or 125mcg. I have M.E as well as Hashimoto's. I haven't had my vitamins/minerals checked but may take up your suggestion and get these checked privately. I just don't know why my T4 increased on my last test in November when I had decreased my dose from 150mcg to 125mcg unless it was because of the stress I was under. I'm unsure about conversion to T3 but, presumably, if I get these tested privately, this should be shown?
Conversion often gets worse after menopause, then vitamin levels drop, TSH drops and FT4 rises.....but you remain hypo
As you were previously on T3 you may need to be back on it
You must have been on constant unchanging dose for 6-8 weeks before testing
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 Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Yes, I have tested after 8 weeks and do take multivitamins but will pay for a private test as I doubt my surgery would agree to checking everything that needs to be checked. I know that menopause and the drop in hormones can affect thyroid levels but I didn't know in what way or how stress might affect these.
Most multivitamins are not usually recommended on here. Too little of what we do need and usually stuff best avoided like iodide
I am in the same situation. Have been going through a lot of stress lately plus menopause. After being stable on the same dose of NDT for years, I all of a sudden had to drop by 1 grain after my FT3 levels ended up above range along with some unpleasant hyper symptoms and elevated body temp (37.1C in the morning before rising, 37.9C at bedtime).
Not sure how these things are related, though, as I've read that stress will increase cortisol levels which in turn will increase rT3 production. rT3 is inactive and will block the action of free T3, causing hypothyroidism. However, that has not happened to me; if anything, I've ended up slightly hyper while being under a lot of stress.
I was previously on 4 grains of NDT which contain 152 mcg of T4 and 36 mcg of T3 and that is more than the thyroid gland normally produces. I am currently on 3 grains (114 mcg of T4, 27 mcg of T3) and feel better on that and definitely less jittery. Of course, the T3 in NDT makes me need less T4 than if I had been on T4 only. Back in those days, I needed 175-200 mcg of T4 daily just to feel human.
I expected to need more NDT during the winter, but the cold does not seem to make me need more thyroid hormone.
Yes, I am wondering how I can find out if stress is causing my T4 to rise. Just don't want to have to lower my thyroxine any lower than 100mcg and yet doctors can be so insistent.
Your B12 needs to be over/around 500 to prevent cognitive decline and neurological issues. Ferritin is good around 70 or mid-range. Folate the same. VitD is good at 100 or above. If any of these results are low in range then you can have many symptoms and also the thyroid meds will not work as well in the body.
The above B12 link is very informative - with the list of signs and symptoms - neurological ones come first - and videos to watch ... Make sure you request copies of all test results with ranges - results that are legally yours. GP's are often happy to say Normal/Fine/OK - when they are just in range.
Your dose only needs lowering if your FT3 is over range - so that is the most important test.
I think the mistake most doctors and endocrinologists make is that the blood tests they use in these 'modern' times were introduced along with levothyroxine as a 'set' when hypothyroid. i.e. blood tests for T4 only which has to convert to T3.
Levothyroxine (T4 alone) is an inactive hormone and it's job is to convert to T3 as it is T3 which is the Active Thyroid hormone and we have millions of T3 receptor cells in our bodies and all need T3.
Therefore if we take NDT - the very original replacement since 1892 and patients survived at last, instead of a dreadful death the numbers wont correlate. It is made from pigs' thyroid glands and I've read it is therefore more conducive to the human body.
That's the reason, I believe (and I am not medically qualified) is why NDT, which contains T4, T3, T2, T1 and calcitonin, that the modern blood tests tests cannot correlate as they were introduced along with levothyroxine (T4) alone.
Also M.E and Fibro and CFS were only'named' about ten years after the introduction of levothyroxine alone and blood tests. Probably due to the patient not having sufficient T3 in their bodies to relieve symptoms. The fact too that since 1892 people survived on NDT and the treatment saved their lives and they didn't die of a myxedema coma any more.
Those doctors who were skilled in the use of NDT (introduced in 1892) was to gradually increase the dose by taking clinical symptoms into consideration and slowly increased dose until the patient had no symptoms and felt well. No blood tests were needed. That's why Fibro and ME were named plus CFS- they had to do something as everything had to fall in with the 'brand new' blood tests which do not test the Free T4 and Free T3.
It is the same if we take a combination of T3/T4 - results cannot correlate.
Just the mention of levothyroxine to me, instantly recalls how awful I was on it and it comes as a surprise that 'medication' makes one feel worse than before diagnosis.
All of our doctors who 'treated' symptoms in preference to blood tests were put under pressure and some resigned and some may have lost their licences.
Those who do fine on levothyroxine will not be looking on forums and will feel well.
If a reduction in T4 dose is not showing a reduction in FT4 (and this is progressive) it will be important to know your FT3 level, because it might be that your T4-T3 conversion efficiency is progressively worsening. It is vital to find your FT3 level and work out the ratio of FT4/FT3. If it is over 4.5/1 (in pmol/L numbers not others) then this indicates poor conversion.
Did you know that diogenes who responded above is a Research Analyst involved in Thyroid Research ! Did you manage to get the FT3 tested with all the others ? Hope you are well.
Really important to have FT3 tested as it is the most important thyroid hormone needed in every cell of your body.
I spotted your post on the Fibro Forum suggesting Thyroid testing and gave you a Like ! I was restricted there for suggesting the correct thyroid testing so was not able to post to support you - sigh !
As T3 was stopped 3 years ago .....likely Ft3 has dropped considerably
As Ft3 drops then gut function gets worse and lo2 stomach acid causes vitamin levels drop too
Low vitamins result in poor conversion of Ft4 to Ft3...so Ft3 drops further
Important to regularly retest vitamin D, folate, ferritin and B12
We frequently need to supplement continuously to maintain optimal vitamin levels
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
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
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