I was diagnosed with an underactive thyroid in 2006 and have been on levothyroxine since. 175 at the highest and now 100 (due to low TSH).
I had blood tests done at Monitor My Health and the results are
Your result is 0.05 mu/L
TSH levels low (normal range 0.27 - 4.2 mU/L)
Your result is 15.5 pmol/L
FT4 levels normal (normal range 12 - 22 pmol/L)
Your result is 3.2 pmol/L
FT3 levels normal (normal range 3.1 - 6.8 pmol/L)
The blood test was taken 5 days after reducing levothyroxine from 125 to 100.
My Dr asked me to reduce because of a low TSH - that NHS blood test was TSH 0.03 (no other tests) . I expect he will want me to reduce it again in 3 months time if the TSH is still low, which it no doubt will be.
I wouldn't really want to reduce it more - because of the T4 and T3 - but is this right?
I will do another private blood test at the same time as the repeat NHS test.
Any help would be appreciated - thanks
Liz
Written by
Book99
To view profiles and participate in discussions please or .
Your Ft3 is extremely low at only 2.5% through range
Ft4 too low at 35% through range
So you very likely need dose increase in levothyroxine and currently extremely poor conversion
Blood test should done after 6-8 weeks on constant unchanging dose and brand of levothyroxine
Do you know if you have high thyroid antibodies?
When were vitamins last tested.
What vitamin supplements are you currently taking
Good vitamin levels improve conversion of Ft4 to ft3
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 at least annually
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 if nor been tested yet)
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
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
How are you feeling Book99?Have you ever seen an endocrinologist?
Your T3 and T4 are low in the range and as SD says, you’d do better with an increase not a decrease.
With the help of forum members, I feel so much better with thyroid medication & key vitamins more optimal.
The reason I ask if you see an endocrinologist is that you might feel better if you had a trial of T3 in combination with your Levo. However, not all endocrinologists (NHS or private) are thyroid specialists, so worth checking with forum members if you are considering this option.
Unfortunately your doctor, as many others are too, are trained to go by the TSH level. This method has been shown to lead to under medication which clearly is happening to you. You are very undermedicated. The TSH (Thyroid stimulating hormone) is not a thyroid horome but simply a chemical mechanism that your brain (the pitutory) uses to tell your Thyroid to produce more or less thyroid hormones. What your doctor should be doing is looking at the actual thyroid hormone levels (Ft4 &Ft3 blood test results). These need to be in the top third and some people need them near the top of the ranges to feel well. Sadly many endocrinologists are not thyroid specialists but specialise in diabetes so know no more than your GP re thyroid treatment so if you go down this route you will need to be super careful who you see.
First step is to get full thyroid and vitamin testing done
Come back with new post once you get results
Likely to need to improve low vitamin levels before seeing any thyroid specialist endocrinologist
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
If you have high thyroid antibodies then strictly gluten free diet often helps or is essential
But always get coeliac blood test done BEFORE cutting gluten out
Thank you for your replies. I really appreciate it.At the moment, the more I read - the more confused I get - so your replies are very helpful.
I will do another private test to co-incide with the NHS test in 3 months (and will do the full thyroid and vitamins etc) I will then have the information/evidence on how things have changed since recent reduction in levothyroxine to 100.
(I did do the private test 1st thing in am, not taken levo and had left 24 hrs from previous dose - helpful advise I have read on the forum)
I 'm not sure how I'm feeling to be honest. Nothing at all like when I first diagnosed thankfully. I could have symptoms, but its so hard to tell. These could be due to depression or eating disorder (bulimia morphing into binge eating disorder).
My dilemma now is whether to share the recent private blood test results with my GP. I am now very preoccupied with the situation. There is also a feeling of not having any control.
Well you could show the doctor the private blood test and whilst s/he is not obliged to take notice, it might prompt a dose increase in T4 - Levothyroxine which can be actioned in the surgery.
It might even prompt a thought in the doctors brain as to why s/he didn't/ can't / run the appropriate thyroid blood test and offer a level of treatment to the patient that they would expect for themselves.
If it is this doctor who has taken your dose down from 175 mcg is there another doctor in this surgery who might be more clued up on thyroid?
Sadly many doctors only monitor and dose on a TSH blood test result which is totally wrong and as you can see, because you have a low TSH it's presumed your T3 is high, which is the complete opposite of where you are.
You need to be dosed and monitored on your T3 and T4 blood test result with aim being to have these 2 essential hormones balanced and at a high enough level in the ranges to restore health and relieve symptoms of hypothyroidism.
You need to slowly build up your T4 medication by 25 mcg increases and get bloods tested every 6-8 weeks as you will probably feel better when your T4 is in the top quadrant of the range at around 20 and this should in turn increase your T3 proportionately.
Did you have your antibodies tested ?
Was there a cause to your being diagnosed hypothyroid back in 2006 ?
No thyroid hormone works well if vitamins and minerals are not at good levels within the ranges and we need to keep our core strength strong and solid.
Do you have any results for ferritin, folate, B12 and vitamin D ?
I maintain my levels with around a ferritin at 100 : B12 active at 70 + - B12 serum 500+ folate at around 20 and vitamin D at around 100 : obviously range dependant but aim for a good over 50% through.
T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs - and your ability to convert the T4 into T3 can be compromised by low vitamin and minerals so it's essential those listed above are maintained at good high levels to help the medication work effectively and support your core strength.
It is very hard when being told by the doctor that you need to do the opposite of what you think - doctors do seem all powerful and do take control - but you are not wrong and you took back some control by taking these private bloods.
You needed proof and these blood test totally highlight and show the stupidity of the system we find ourselves in when relying on NHS blood tests for thyroid when we realise that only a TSH is run.
The TSH test was originally introduced as a diagnostic tool to help diagnose hypothyroidism and it was never intended to be used once the patient was on any form of thyroid hormone replacement.
Knowledge is power, and with that comes back control and once your T3 comes up the range with dose increases in Levothyroxine your mental clarity and strength within will be restored.
You are being sucked into the big misunderstanding most docs have. Your situation is very similar to how I started out on Levo. My (good) doctor slowly built me up to 150mcg of Levo and I felt better and better. After I had achieved a good result and enjoyed feeling great for a year my doc retired and I flopped back to an Endo. She took no notice of the fact that I felt great, looked at my TSH result and immediately dropped me back to 125mcg. I immediately became very ill with hypothyroidism. I kept complaining about how I felt and she told me, "My job is done, your blood tests are now normal. If you feel ill then see your GP in order for him to diagnose your problem"!!!!!! At that point I panicked and took the situation into my own hands - but that's a long story, one which I think you are about to embark upon. Basically it is study up as much as you can, experiment, and take the advice you read on this site because, while doctors still adhere to this TSH rot, it is basically DIY.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Back with test results, please advise!
New test results - Please advise?
latest results, confused, please advise!
New blood results/advise please 😁
Medicheck Results, please advise.
