I had a throidectomy 3 years ago as I was diagnosed with Graves disease but my TSH levels keep going up and down. I am still having regular blood tests and my meds keep being changed. Has anyone has the same problem and do you know why the levels wont settle. Considering going to see an endocrinologist for answers but dont know what to do. My life seems to revolve around blood tests and then telephone consultations with GPs!
post throidectomy.: I had a throidectomy 3 years... - Thyroid UK
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kent1962
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hello there, I too have graves and am waiting for a thyroidectomy.I was hoping that my levels would be alot more stable afterwards so I await the replies to you question.Wishing you well.
Thank you for your reply. Wishing you all the best with your operation ❤.
Hello Kent and welcome to the forum :
It is essential that you are dosed and monitored on your T3 and T4 blood test levels and not a TSH which if you are now under the care of your doctor in primary care this maybe the only blood test being run.
The TSH was originally introduced as a diagnostic tool to help confirm a diagnosis of hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement.
The TSH is the least reliable measure of anything once on thyroid hormone replacement and this is especially true in Graves Disease patients as we still have antibodies circulating and likely ' sitting on ' TSH receptors distorting TSH readings down - so you may appear to be " hyper " for want of a better word when the reality is you are probably undermedicated.
What medications are you taking ?
T4 - Levothyroxine is inert and a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and is said to be around 4 times more powerful than T4, with the average person needing to convert around 50 T3 daily, just to function.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing, so whilst we can't turn back the clock we can try and ensure we maintain optimal core strength and wellness.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual wellbeing, 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 plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Some people can get by on T4 - levothyroxine :
Some people find theT4 seems to not be effective as it once was and need the addition of a little T3 - to likely replace what their own thyroid supported them with.
Some people can't tolerate T4 and need to take T3 only :
Some people find they achieve better health taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.
Generally speaking, currently, the NHS prescribe T4 only, your doctor an only prescribe T4 and you will need a referral back to an endocrinologist for anything other than Levothyroxine.
In order to help you further we do need to see some blood test results and ranges for a TSH, T3, T4 and inflammation, antibodies, and ferritin, folate, B12 and vitamin D as otherwise everything is a guess and not helpful.
If your doctor is unable to run these bloods for you there is a list of private companies who can, and found on the Thyroid UK website who are the charity who support this forum.
This is where we all need to start of and you simply start a new post with these results and ranges and forum members will talk you through anything that needs explaining and help you also get back your health.
I'm with Graves Disease but post RAI thyroid ablation in 2005 and found this forum around 6 years ago and am now so much better and basically come back on to help others claim back their health for themselves.
Thank you so much for your very informative reply. I am taking 75mcg of levothyroxine, just reduced from 100mcg. Every time they increase my dose I go 'overactive'. They do test for tsh and t4 and t3. I have requested copies of all my blood tests since 2019 so I can look at them myself and see if there is a pattern. O have not 'seen' a doctor for the last 2 years. I have had many telephone consultations and yesterday I asked to be referred to an endocrinologist to get specialist advise but they have refused as they said I need to get my levels right before a referral!!! Will probably go private if needed.
Well, that sounds like you are on a not so merry Merry Go Round - doesn't it :
When you say with a dose increase " you go over active " what exactly do you mean ?
Do you actually feel " hyper/ overactive " - what symptoms are you suffering with as it can be very confusing as some symptoms cross over both hyper and hypo conditions or is it that your results then " look overactive " ?
There is a list of both hyper and hypo symptoms on the Thyroid UK website maybe take a look and see in which ' camp ' you sit :
Can you give forum members the TSH, T3 and T4 results and ranges you have please ?
Again you may be better served arranging to see an endocrinologist from the list held by Admin @ Thyroid UK - as again, forum members have found through experience that not all endos are worth waiting and paying to see.
Yes merry go round is how I describe it! By overactive I mean I get very breathless with palpitations abd really bad pains in my legs. Usually 2 days after reducing my dose these symptoms disappear. I don't yet gave copies of my blood test results. But I do know that my tsh was 4.5 kadt April, 9.5 in October but I felt fine so no med change. Then 6.2 in January thus year my meds were then reduced. Another test in February and it was 0.19!
Graves is an auto immune disease which only tends to get diagnosed when it attacks the eyes and especially the thyroid because the thyroid is such a major gland and the body's engine, and it reads as though you now have ' kangaroo ' petrol ??
By surgically removing your thyroid all that has happened is that you are now hypothyroid with Graves Disease.
Your Graves antibodies now have no gland to keep driving up your T3 and T4 levels and so now you are not considered with a life threatening disease, but likely with a life limiting health issue.
Once hypothyroid you can't become hyperthyroid but you maybe over medicated which I very much doubt.
Thank you for all the info provided. Will go away and read carefuly. Will most likely book to see an enocrinologist .
Well, yes, that just goes to show how unreliable a TSH result can be and why you need to have a T3 and T4 run at the same time.
Those symptoms sound more like an imbalance of thyroid hormones and undermedication to me.
Ideally when optimally medicated your TSH should be under 2 and likely under 1.
Yes I agree. I had a medical months before I was diagnosed and my TSH was 1.3. I tried telling the doctor that but to no avail. In my opinion my February level was too low.
Well as already mentioned the TSH is not a reliable measure of anything once on any form of thyroid hormone replacement and especially since you haven't a thyroid to stimulate and have Graves Disease.
I'm now optimally medicated and my TSH is at 0.01 - and my doctor would think I'm over medicated but that is far from the reality that that is why we must not concentrate on a TSH reading but on where your T3 and T4 sit i the ranges.
We generally feel at our best when our T4 is in the top quadrant of its range as his should in theory convert to a decent level of T3 as it is too low a T3 that gives you symptoms f hypothyroidism just as too high a T3 may give you symptoms similar to being ' hyper ' :
The accepted conversion ratio when on T4 only is said to be 1 - 3/50 - 4.50 - T3/T4 with most people feeling at their best at around a 1/4 ratio T3 to T4 : and if your conversion ratio is coming out wider than the 4 the obvious first port of call is to check your levels of ferritin, folate, B12 and vitamin D as these can compromised conversion and can be easily rectified by supplementing what ever is necessary.
I get very breathless with palpitations abd really bad pains in my legs.
These symptoms can be low vitamins rather than thyroid
Breathlessness and palpitations frequently linked to low iron/ferritin
Bone/joint pain low vitamin D
Dizziness or feeling drunk low B vitamins
On levothyroxine the aim is to increase the dose slowly upwards in 25mcg steps until TSH is ALWAYS below 2 .
Most people when adequately treated will have TSH around or under one. After Graves’ disease even lower TSH is common.
Just testing TSH is completely inadequate
Always test Ft3, Ft4 and TSH together
Always test early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Hi there. I do take a vitamin d supplement and eat plenty of marmite which contains numerous b vitamins. I never take any supplements less than 4 hours after my thyroid meds and do not consume caffeine or breakfast for at least 30 minutes after thyroid meds. Hoping to have a telephone consultation with my gp with the hope of getting a referral. 🤞. Thank you for all your advice.
Before considering booking any consultation we always recommend getting FULL thyroid and vitamin testing done first
If vitamins are low, first step is to improve to optimal….and fine tune levothyroxine dose if necessary
Vast majority of endocrinologists are diabetes specialists
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
Likely to need to go privately……if TSH and Ft4 thyroid levels are “within range “ nhs endocrinologist unlikely to agree to see you
SlowDragonAdministrator
Welcome to the forum
Essential to always rest Thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH and lowest Ft4
Do you normally take levothyroxine waking or at bedtime?
Please add recent thyroid results and ranges
Far too frequently GP’s dose by TSH which is completely incorrect
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Many people find different brands are not interchangeable
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
New guidelines for GP if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Always take meds in am. Blood tests always in morning. Never take biotin.
So you take levothyroxine before blood test?
If took levothyroxine before test this gives false high Ft4, but won’t affect TSH
Many many people on levothyroxine will have TSH below range when adequately treated. Most important results are always Ft3 followed by Ft4, and all four vitamins at OPTIMAL levels
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
As you only just changed dose again…..look at getting vitamin levels tested now via GP or privately
NHS easy postal kit vitamin D test £29 via
Biotin is in lots of multivitamins and vitamin B complex
We never recommend multivitamins on here
But, many many thyroid patients need to take daily vitamin B complex
Test first before starting any supplements
SlowDragonAdministrator
Vitamins
On just levothyroxine, especially if GP keeps changing dose up and down incorrectly, you are likely to have low vitamin levels
ESSENTIAL to test vitamin D, folate, ferritin and B12 at least once a year
When were these last tested
Request GP test these now
Are you currently taking any vitamin supplements
Gluten
As you had Graves’ disease you’re likely to benefit from being on strictly gluten free diet
But get tested for coeliac BEFORE cutting gluten out
lloydspharmacy.com/products...
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
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