I had a full thyroidectomy in 2000 and although it took a little while to stabilise / find the correct dose of levothyroxine for me, I’ve now been taking 125mcg for many years and feel pretty good despite a few issues with my white blood cells which is another matter…
I have an annual blood test and this month it showed a low TSH reading. Straight away the doctor booked me in for a med review and I’d suggesting a dose reduction. I am not happy with this! I have no symptoms of being over-medicated and worry that messing with my dose could make me feel unwell after years of stability. The results are as follows:
serum T4 level 16.8 pmol/L (7.0-20.0)
Serum TSH level 0.08 mu/L (0.3-5.0)
I had the test first thing after fasting and 24hrs since last dose.
Am I being silly wanting to reject the change? Or should I push for additional testing?
Any advice greatly appreciated.
Thanks
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IslandBean
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The NHS blood tests really don't give us a full picture of our thyroid health. To see that we need an additional test for FT3 which is the active hormone. If both FT4 & FT3 are within the normal range then you are not over replaced although the NHS doesn't understand this.
It may be that you have low vitamin levels which are lowering your TSH. Most hypo people need to supplement continuously to maintain OPTIMAL levels of key vitamins ferritin, folate, B12 & D3. 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 & 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.
You can also 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. "
See also this link with information about keeping TSH lower.
Thanks Jaydee1507, I have been tested for D3, B12 etc in the past but not for at least 2 years now. I have considered organising a private test as I really don't want to decrease my dose and could do with some evidence to present to the GP when I have the review next week. I may try asking them to test for the key vitamins etc and explain that I will not agree to any dose changes without more information to base the decision on. I'm on the Isle of Wight and I don't suppose there are any walk-ins for tests over here. Will need to go for a postal option I think. Thanks again for the advice.
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Your doctor is obviously only looking at TSH to decide your dose of Levo which is wrong. TSH is useful for diagnosis but doesn't have much use once on thyroid replacement hormone as it's a pituitary hormone, the thyroid hormones are F4 and FT3, with FT3 being the most important and very rarely tested.
Your FT4 is 75.38% through range which is a good place to be, definitely not overmedicated, providing that you left the 24 hour gap since last dose of Levo to give the most accurate measure.
Has your TSH been low before? What does it normally come back like?
Thanks for your message. I had the test at approx 8.30am as it was either that or 7am which I felt was too early. I'd taken last dose of Levo 24 hrs before and just had water in the morning until the test was done.
I am really lax at taking any supplements so don't think I had anything in the run up that contained Biotin but will be really careful to make sure of this next time.
I believe my TSH has always been low (I'll try and go through the last few years tests to check) but maybe not quite as low as this, which is why they've suddenly jumped on it and suggested the dose reduction.
The reason for my Thyroidectomy was Graves disease that wasn't responding well to medication. Having experienced both being extremely hyper and also hypo I feel that I know my body enough to recognise whether I am under or over medicated. It's just so frustrating that the GP doesn't test for the right hormones, or in fact test for the same things each year for a proper comparison. It's definitely worse since Covid too as it's near impossible to see anyone face to face and decisions are made on scant information - like a quick glance at TSH levels.
I'm relying on the GP I speak to actually listening to me and not pushing a dose adjustment without further testing at least. If I can get them to test the vitamin levels but not the T3 etc I will definitely organise the private test for my own information.
Refuse to reduce dose at moment and get FULL thyroid testing …..ideally via GP …if not test privately
You need TSH, Ft4 and Ft3 tested together
Do you always get same brand levothyroxine at each prescription
Essential to test folate, B12 and ferritin at least annually
Test vitamin D twice year when supplementing
Many (most?) thyroid patients need to supplement vitamin D, magnesium and vitamin B complex continuously to maintain optimum vitamin levels
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. "
Thank you SlowDragon, that's really helpful. The levo brand I have been prescribed has stayed the same for a good few years now. I'll do my best to get the GP to test again with the vitamin levels too, and then go private if not.
The TSH is originally introduced as a diagnostic tool to help confirm a diagnosis of hypothyroidism and was never intended to be used as a marker once on any form of of thyroid hormone replacement as then a Free T3 and Free T4 reading need to be run.
We generally feel best when our T4 is in the top quadrant of it's range as this should convert to a decent level of T3 at around a 1/4 ratio T3/T4.
T4 is basically a storage hormone and needs to be converted by your body into T3 which is the active hormone that runs the body, like petrol in a car. and said to be around 4 times more powerful than T4, so super grade premium fuel.
The thyroid is a major gland responsible to full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by one T4 - Levothyroxine only :
Some people find that T4 seems to stop working as well as it once did and that by adding back in a little T3 - likely to replace that ' lost ' when the gland was removed - they can restore T3 and T4 hormonal balance.
Some people can't tolerate T4 at all and need to take T3 - Liothyronine only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pigs thyroids, dried and ground down into tablets referred to as grains.
Currently your doctor can only prescribe T4 - which seem to be suiting you, providing you are able to keep your dose as it is - and since your T4 is only around 75% - I very much doubt you are overmedicated - but we need to see where your T3 and 4 sit from the same blood draw to help confirm that you are not over medicated and there is no need for a dose reduction in Levothyroxine.
Just for reference T4 needs to convert in the body - generally the liver/ gut area - to T3 and non optimal levels of core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D can compromise this process - so ask your doctor to run a full thyroid panel to include TSH, Free T3, Free T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D - so we have base numbers to talk you through and advise on if anything looks amiss.
I feel a bit daft as despite being on levo for more than 20 years I still didn't know enough about the relationship between the different hormones. But it's never too late to learn!
In order to reply to someone in particular you need to make sure you reply in the reply box alongside their comments and their name pops up in your reply - as then they get notified they have a message.
No, you are not silly - I also knew nothing 10 years on from RAI thyroid ablation for Graves and only started researching when told my ferritin was at 22 - and otherwise I was well and good to go -as by that time i was on my knees !!
Read my profile - just press on the icon alongside my name and read my thyroid journey of being dosed and monitored on just a TSH reading - and in an ever decreasing circle of wellness for around 2 years and trusting the doctor, the thyroid lead at a group surgery, knew better then me, though when I questioned everything i was offered anti depressants.
Thanks pennyannie, I was replying on a different device and clicked In the wrong place as I couldn't see the screen properly! I'll read your story now. Sounds like you had a hell of a time. I was initially told (pre-diagnosis) that despite my eyes bulging, being boiling hot and eating everyone's dinner and still being hungry, that I was fine. After pushing for repeat testing my levels were found to be 6x higher than ideal. The next few years were horrendous and as I was only 16 at the time and doing my A-levels it ruined a time that should have been some of my best years. The whole of uni was spent trying to get my thyroid under control, having the thyroidectomy and then suffering horrible issues with thyroid eye which made me terribly self-conscious. I was then hypo for some time as they gave me too low a dose - probably due to looking at the TSH levels and not the whole picture. We soon learn that we have to take charge of our own treatment as, despite how much we want to, we can't fully trust in the system to do the right thing.
Oh, I didn't realise you too are with Graves Disease -
Even more reason not to trust a TSH -
Once a Graves patient always a Graves patient as this is an auto immune disease and the cause is one of our immune system mistakenly attacking our body rather than defend it - with the thyroid being the victim of this poorly understood and badly treated AI disease -where common triggers appear to be stress and anxiety.
We can have Graves antibodies ' circulating in our blood and sitting on our TSH receptor sites for years and years - no one knows.
Graves waxes and wanes throughout one's life - so the thinking is as we can't cleave off the Graves antibodies driving down the TSH reading - let's disable the thyroid gland/body's engine - either by having RAI thyroid ablation and drinking a toxic substance that slowly burns out the thyroid in situ - or slit the neck and remove the entire thyroid rendering the patient primary hypothyroid and totally reliant on having to take thyroid hormone replacement for the rest of their lives - so switching the patient from automatic to manual controls and reliant on a measured dose of thyroid hormone replacement for the rest of their life.
It is like being between a rock and a hard place - I'm so sorry that it happened to you when so young - it's not good at any age.
You might like to reading around - the most well rounded of websites I found is that of Elaine Moore who has Graves and went through RAI and becoming more unwell since this treatment devoted the rest of her life to finding answers and developing research as her profession is that of a medical technician in the States.
Thank you. It certainly wasn't a fun experience and it was so hard to make the decision to have the thyroidectomy instead of the RAI treatment. I chose the surgery in the end as had heard some worrying things about RAI and felt that although the surgery would affect my self-esteem and take a while to recover from, it might be better in the long term.
I've just had a look at my previous blood results and the TSH level has always been low. The only difference is the opinion of the practitioner reading the result - most of the time they have noted that as on thyroxine the result is acceptable as long as I am feeling ok. This time they have flagged it as needing review when they should have looked at the historic pattern first. At least I can refer them to the other results and they can see that things haven't significantly changed.
I do like to read about other people's experiences so will take a look at Elaine's site, thanks pennyannie
What is disconcerting is that the NHS continue to offer a limited time window on AT drugs and RAI as the first line treatment - sometimes as in my case, the only option - though I was very well on the AT drug.
Obviously your case was much worse than mine - and if your eyes were already involved, as mine were, RAI should not even have been offered as a treatment option as it tends to exacerbate thyroid eye disease.
We also know now that RAI is also taken up - to a lesser extent - by other glands and organs within the body and there is a known cancer risk to the breasts and small bowel, and I guess this subject is likely to be continued - as further evidence based research dictates.
I was aged 58 and deeply regret having RAI though knew no different - I simply trusted what I was told which I realised, some 8-10 years later was very limited and no one in the NHS mainstream arena would take responsibility and I ended up having to sort myself out and now self medicate and stay away.
P.S. . I see you registered here in 2014, but this is your first post - I know people ' lurk ' - I did for a couple of months - but think you must be the winner of the lurking lottery !!!
Haha, you did make me laugh with your lurker comment I actually joined so that I could keep up with any new treatments for my husbands lung condition then added myself to the Thyroid page too. I haven't posted before because my husband is very private and rarely posts anything online. But In this case It's about me so here I am!
I'm so sorry that you had an awful experience with the RAI and associated care. At the time I was offered it I had read about potential fertility issues which worried me as I wanted children. As it turns out we haven't had them anyway but even if I knew that might be the case I think I would have stuck with my decision.
It really is worrying that people are basically having RAI treatment as they maybe don't feel that they have a choice if they have been on AT drugs for some time. Thank goodness for forums like this where people can learn from each other and make more informed choices / advocate for themselves better as a result.
There is likely a genetic predisposition to Graves with possibly a family member a generation away from you with a thyroid health issue - and Graves tends to get triggered at around puberty, giving birth or menopause, with stress and anxiety being common triggers, and yes, you are right regarding RAI fertility issues and probably why younger patients are more likely to be offered a thyroidectomy.
As I understand things it takes great skill and considerable time to manage a patient well on the AT drug - and the hospital pressure and incentive is to reduce O/P waiting list times rather than extend them and definitive treatment, especially RAI seen as more cost effective as it is a quick fix - just a 15/20 minute appointment in Nuclear Medicine and a discharge back out into primary care.
Sorry for late reply. Interestingly I think my paternal great grandmother would have been diagnosed with a thyroid issue - possibly also Graves - if they’d understood the condition back then. As it was I think they took her symptoms as signs of madness and she died younger than she should have. I had the call with the doctor and she dismissed any idea of testing for t3, just saying ‘we don’t test for that!’. She accepted the fact I didn’t want to change my dose and has arranged a blood test for Oct including Vit D, B12, Ferritin etc. I may still get a private test done for the t4 and t3 results.
Ok - no worries - yes - best to get the blood tests run yourself and then post the results and ranges in a new post/question - we need a TSH, Free T3, Free T4 antibodies, inflammation and ferritin, folate, B12 and vitamin D.
You will be talked through what it all means and be better prepared for your next appointment with your doctor as forum members will also advise on your next best steps back to better health
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I actually joined so that I could keep up with any new treatments for my husbands lung condition then added myself to the Thyroid page too. I haven't posted before because my husband is very private and rarely posts anything online. But In this case It's about me so here I am! 
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