I am 65 and am on 75 mg thyroxine per day. I have no thyroid (thyroid cancer years ago).
My last TSH blood test in the NHS was 4.5. Private test result a few weeks earlier TSH was 6.2.
My GP notes say no further action - but I think both results might indicate the need to increase my thyroxine medication to 100 mg.
I don’t know what to do.
THANK YOU if you have any advice.
Hi ThymeTime, welcome to the forum. 
Yes. 4.5 is much too high. It should come down to 1 or under. But GPs really don't have a clue about thyroid, they are incredibly ignorant on the subject, and think that just because it's somewhere within the range it has to be ok and their job is done. They just don't learn how to treat hypo in med school.
So, what can we do? Well, we can try seeing a different doctor in the hope he might be a bit more interested in making us well. We can try nagging our present doctor, and making a nuisance of ourselves, until he gives us what we want just to get rid of us. We can make a huge effort to learn about the thyroid so that we know twenty times more than he does (not difficult) and then blind him with science... But what we don't do is cry or beg or put ourselves in the inferior position that gives him a power rush. We stand tall in front of him, full of confidence, and say : this is what I want and I want it now. Surprising how many times that works.
A 'normal' (euthyroid) TSH is around 1, never over 2 - which shows your thyroid is struggling - and over 3 you are technically hypo. So, at 4.5 you are still hypo. Have you actually spoken to your GP about this? Or just seen the results on-line? Did he test anything else apart from the TSH? I don't suppose he even thought about it when he wrote 'no further action'. Just saw it was within the range and automatically wrote it off. He needs to have his attention drawn to the fact that it's too high for good health because if you never complain, nothing will ever change. Silence is acquiescence. So if we don't say anything he thinks it must be alright. He's not a mind reader and he doesn't even particularly care. So, ask him. Calmly and confidently say: I would like my levo increased to 100, please, I still have symptoms and think I will feel better on a higher dose.
“I would like my levo increased to 100, please, I still have symptoms and think I will feel better on a higher dose”.
Thank you GreyGoose🙏 I appreciate you taking the time to help me. I will say that to him/her. ( I hope that works or I shall have to go private I suppose. )
you definitely need an increase of 25mg because a dose of 75mg is only just above a starter dose of 50mg. These doctors are clueless and I actually was speaking to an ex colleague of my husbands yesterday. We bumped into her and her husband while out and about She told me she is hypothyroid and is struggling to lose weight she then tells me she is only taking 75mg of Levothyroxine! I told her to join this site because she is definitely under medicated. I bet there are thousands of women in the same position who are being told by doctors everything is fine when actually it isn’t. I agree with greygoose i would find another doctor
I have also put in weight. I hardly eat anything!
It’s pretty poor that we are treated with such cluelessness/little care :-(.
Its your lack of T3 that prevents you from losing weight. T3 is the driver of your metabolism and without sufficient T3, your metabolism cannot run efficiently.
How are your cholesterol levels? Many hypothyroid patients have elevated cholesterol levels, as the lack of T3 prevents the liver from clearing this from the system. Many get prescribed statins, but even the NHS states that the hypothyroidism should be addressed first before giving out statins, as this will bring down cholesterol levels without the need for statins.
Your inability to lose weight is a metabolic problem, not a dietary one, so it should be addressed by increasing your thyroid hormones.
Hello ThymeTime and welcome to the forum :
Most ranges for TSH are around - 0.40-4.00 - and I understand doctors are advised that once the patient is on thyroid hormone replacement the TSH should be maintained at around 2 :
gpnotebook.com/en-GB/pages/...
The TSH is used as a marker on which to judge the level of thyroid hormone replacement - T4 - Levothyroxine needed by the patient -
it is not a very reliable measure of anything especially when you haven't a thyroid - as then we should be dosed and monitored on our Free T3 and Free T4 results and ranges.
A high over range TSH - when on thyroid hormone replacement means your dose of T4 needs increasing to bring the TSH back down into range - and we generally feel best when the TSH is towards the bottom end of its range and likely under at least 1 -
but if nothing else your doctor is obliged to keep your TSH in the range - and you'll probably feel best with your TSH towards the lower end of the TSH range which will happen with an increase in your thyroid hormone replacement
Did you run your T3 and T4 bloods in this private blood test -
as these are much more important than a TSH reading once on thyroid hormone replacement
if you care to share any Free T3 and Free T4 readings and ranges you have we can talk you through what these mean- and if you also had your core strength vitamins and minerals run - those of ferritin, folate, B12 and vitamin D we can advise where best these need to sit for optimal utilisation of the thyroid hormone replacement.
These were my other (private) blood results. The NHS repeat blood test was only for TSH (this time the result was 4.5, not 6.2, but still in the high side).
THANK YOU ALL SO MUCH. I feel pretty alarmed at all this. I have an appointment to speak to my NHS GP on the phone in two weeks. If I don’t get what I want - increase to 100 mcg of thyroxine should I go to private GP or private endocrinologist ? (Not easy for me to afford)
We generally feel best when the T4 is up the range and towards / just in the top quadrant at around 75/80% through its range with the T3 tracking just behind the T4 at around 70% through its range and at around a 1/4 ratio T3/T4.
This private blood test shows your TSH over range with a T3 at 3% and a T4 at 18% -
NHS doctors are not obliged to accept Private blood test results and ranges - but I would make an urgent appointment and use these results if push comes to shove with your doctor - you need at least your original T4 dose reinstated - and then a follow up blood test at 6-8 weeks to see how well you have been able to absorb and utilise the new dose.
T4 - Levothyroxine is a storage hormone and needs to be converted in the body into T3 - which is the active hormone that runs the body - much like fuel runs a car - and currently - as you can see yourself your T3 is much too low -
you are running on empty and your body is a state of stress trying to function as it should.
When metabolism runs too fast as in hyperthyroid or too slow in hypothyroid the body will also struggle to extract key nutrients from your food - which are needed to be maintained at optimal for good conversion of the T4 into T3 -
so ask your doctor if you can also have your ferritin, folate, B12 and vitamin D run and we can advise where best all your bio markers need to sit - as just being in an NHS range, somewhere, anywhere, is not conducive to your optimal health and well being.
You need your doctor to order a TSH + Free T3 + Free T4 blood test + inflammation and ferritin, folate, B12 and vitamin D -
This should be a fasting early morning blood test - just take in water o/night - and you need to leave around a 24 hour window from your last dose of T4 - Levothyroxine so we measure what your body is holding rather than that just ingested.
Any supplements being measured and all biotin containing supplements should be stopped - ideally a week before the relevant blood test.
As you’ve had thyroid cancer your TSH has to be below the range and therefore a suppressed TSH. So needs to be about 0.5 or lower. My sister had thyroid cancer and she has to keep her TSH suppressed as it stops any cancer potentially returning. Your TSH is far too high and you need a significant increase immediately. I’d speak to your GP and your Endocrinologist with some urgency and point out your thyroid cancer in the past. If you get nowhere with the NHS consider going private.
Thank you McPammy. I have been told this view of suppressing cancer by extra high dose thyroxine (I was on 200 mcg thyroxine daily) is no longer a current medical view. This was said to me by a thyroid consultant 4-5 years ago (I no longer see him as my care was thereafter handed to GP). Prior to that, for 20 years, I was on a daily dose of 200 mg thyroxine because of the cancer suppression factor in mind, Then the consultant at Guys Hospital London suddenly changed his mind, giving changed view as a reason, and put me on 100 mcg instead. Then my GP reduced it to 75 mcg last year.
Just read in latest NHS practice notes : “maintaining TSH concentrations below 0.1 mU/l is poor practice due to the increased risk of osteoporosis and atrial fibrillation (1,3,4). The exception to this is after thyroidectomy for thyroid cancer, when TSH values may need to be suppressed to and maintained at a concentration <0.1 mU/l (1,3,4).”
So, a direct contradiction there. It’s pretty confusing.
That’s the first time I’ve heard of this change of mind??? My sister sees thee most eminent Professor of Endocrinology in the country. He firmly believes that with thyroid cancer you must have a suppressed TSH even though that will bring symptoms as you describe. My sister does get many symptoms we were only discussing this last week. I doubt she’ll ever be symptom free. I myself have Hashimotos and with t4 and t3 medications I’m now taking have managed to get myself symptom free. I take ferris fumerate for low ferritin and get b12 injections regularly too. I did have some atrial fibrillation recently but have since found out my ferritin had dipped too much after I decided to not take as much ferritin as I should have. Silly me…sorted now. Vitamins are very important to monitor also!
There are mechanistic studies which link iron deficiency with electrophysiological changes, which predispose to symptomatic arrhythmia. However, the association between iron deficiency and AF has not yet been adequately assessed, but I still think that this is an interesting finding!
Yes, I think I’ve found something here. The only change I had made was not taking ferris fumerate as often (for 3 months) as I should have done. Reason behind this decision was that I wasn’t sleeping as well as usual and ferritin can give me unwanted boosts sometimes. After 3 weeks of regularly taking the ferris fumerate again my AF went away. I didn’t get a blood test for ferritin before I restarted my ferris fumerate but did get one 3 weeks in. The result at that point was 50 when normally it’s around 90-100 on previous results. I aim to get it back to about 100. I’ve just arrived home after getting an echocardiogram. I think it’ll be ok.
Gawd n bennet. What a confusion. My age may have been a factor. I was late 50s at the time; I seem to remember he mentioned osteoporosis. Anyway it was a new consultant, not my usual one. I didn’t get great vibes from him. Your sister’s consultant may still be correct. Thanks for your response. I’m going to have to sit down and think all this through more.
see/contact GP for next increase in dose to 100mcg daily
Retest in 6-8 weeks
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
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
These were my other results from private blood test company:
I've just seen this other set of blood test results -what dose of T4 were you taking here ?
Are these more current than the first set you posted with the TSH at 6 ?
So - once on thyroid hormone replacement - T4 - Levothyroxine our TSH should be kept below 2 with most feeling better when the TSH is down under 1 and towards the bottom of the range -
With some cancers the TSH needs to be kept low suppressed for several years - and can't comment on this as I do not know your health history.
Years ago - with a TSH over 3 - you would be diagnosed hypothyroid and prescribed T4 -
So your TSH much too high for someone on thyroid hormone replacement -
Your T4 is around 25% with your T3 at around 8% through the ranges :
You need to make sure if replying to someone that you reply within their post and their user name pops up as you start writing - otherwise no one is aware you have written anything else;
The volume of questions we receive daily is considerable and this is a patient to patient open forum supported by Thyroid UK - thyroiduk.org - where you can much more information on all things thyroid.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 ,cg -
T3 is the active hormone and said to be around 4 x more powerful than T4 - which is a storage hormone and needs to be converted in your body into T3 and no thyroid hormone works well until ferritin, folate, B12 and vitamin D at up and maintained at optimal levels.
There are 3 main treatment options for Primary hypothyroidism:
T4 - Levothyroxine - T3 - Liothyronine - Natural Desiccated Thyroid :
There is little point discussing these alternatives now -
T4 is the first and easiest treatment option to work with from a patients perspective and we are all start off being put on Levothyroxine - and first we need your T4 to be up in the range at around 75/80% to know how well this first option works for you before considering the above treatment options.
Thank you all very much. I wasn’t really expecting much of a response, if at all, but didn’t know what else to do and luckily found this place.
You will get the best advice possible from the very knowledgeable members of this forum. Good luck with your GP.
Some things for your toolbox,... use them well
~ several good references clearly advising GP's to keep TSH between 0.4/0.5 and 2/2.5 in ALL patients on levo :
healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-
~ simple explanation of why TSH anywhere in range is not the same as optimal ~in case GP is simple :
healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish
~ Current NHS guidelines ~ GP should be using them :
nice.org.uk/guidance/ng145/...
"1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1
Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis. "
note , as your TSH is 4+ on 75mcg, and your fT4 is lowish in range , then a small 'trial ' increase to 100mcg is highly unlikely to supress your TSH or cause thyrotoxicosis , and even if it did ,the dose could be adjusted back to eg 87.5mcg , no harm done, so this part of the guideline should NOT be used as a reason to refuse to trial of a slightly higher dose to see if it improves how you feel.
I am not from the UK, but isn't Roseway (is that the name?) a good option here? To go to the pharmacy with the labs in hand, to get a proper prescription. Is that possible?
I think thyroxine has to be prescribed through a medical doctor here in the UK. A pharmacist is not enough.
Welcome, and sorry you have an idiot for a GP. One thing - if he seems reluctant to raise your dose, remind him of your cancer and ask for a "trial" raise. They seem to be less reluctant if you use the word "trial", and I have never had one come back and ask me how the trial is going!
I hope you get your rise, and feel better soon. Sending a hug.
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