My TSH is now lower than ever at 0.02 (0.35-4.94) T4 13.20 pmol/L. I’m on 125 levothyroxine. I’ve been feeling tired, sore and achy so gp advised blood test. Had a phone call from the receptionist to say make an appointment with the doctor. I presume this is about the low TSH. Could this be the reason I am feeling the way I do? I’m not sure if I need an increase or decrease in levothyroxine. I know that having Graves’ disease suppresses TSH anyway but I’m worried, can it be too low? Please can anyone advise, I’m confused x
Should I be worried with a TSH of 0.02mlU/L (0.... - Thyroid UK
Should I be worried with a TSH of 0.02mlU/L (0.35-4.94)
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Argie1
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SlowDragonAdministrator
All thyroid tests should be done as early as possible in morning and no food or drink, other than water before testing
Obviously you need TSH, FT4 and FT3 tested together
Last dose levothyroxine should be 24 hours before test
Essential to regularly test vitamin D, folate, ferritin and B12
After thyroidectomy many patients need the addition of small dose of T3 if FT3 is low
Optimal vitamin levels can help improve conversion of FT4 to FT3
What vitamin supplements do you currently take?
Thanks for replying SlowDragon. I’m taking Jarrow B12 1000mcg and basic B complex. My gp won’t check T3 so I guess I will have to pay for that. I do take with water and away from food and drink and bloods done first thing with no Levo etc.
Do you test or supplement vitamin D?
Remember to stop any supplements with biotin in a week before any blood test (eg vitamin B complex)
Biotin can falsely affect test results
We don't really have a choice where our TSH is. If we try to get it back into range, we would have to reduce our thyroid hormone and make ourselves ill. So, I would say no, it can't be too low. It is what it is. The important thing is to have enough thyroid hormone to make us well. The TSH doesn't make us well, and it doesn't make us ill, it just vaguely reflects our thyroid status. But, most of the time, it is very vague. 
Thank you for replying, I was worried as it seems to be getting lower and lower but now it makes more sense.
If it gets too low could it go reverse t3
TSH can't 'go to' rT3. rT3 comes from T4 - either because your FT4 is too high, or because of one of the many other reasons. TSH has nothing to do with it.
Besides, rT3 is not anything to worry about, anyway. It does not affect the action of T3 as so many people think. It just syphons off a little of the T4, for whatever reason. It is inert and doesn't cause symptoms. So, forget that.
Sorry I was told about my t4 going too high therefore could end up reverse t3 not tsh, ignore me
OK, brain fog! But, even if the FT4 does go too high and converts to more rT3 than T3, the rT3 itself is not a problem, so nothing to worry about.
I may call myself brain fog from now on 😂. I going to carry on with the 100mcg until the next bloods in 6 weeks and keep taking my supplements and see what happens. Strangely enough I don’t feel too bad today but that doesn’t mean I’ll feel good tomorrow but I hope so.😊
What is the range for T4? It doesn't look all that high. I would guess you are under rather than overmedicated regardless of the TSH. But without the T3 level it's impossible to know
Do you feel "Wired" as well as tired? If you had Graves you know what those symptoms are like.
Try stretching out your arms in front of you, palms facing down and fingers spread. Is there any tremour in your fingers? If not, you are not overmedocated.
The low TSH is almost certainly a consequence of having Graves'. A period of high thyroid hormone levels can suppress the hypothalamic pituitary thyroid axis, you no longer secrete as much TSH as you should do. In this case TSH does not indicate you thyroid status and should be ignored. This is confirmed by your fT4 which is a bit low for someone on levothyroxine. If you can't get you doctor to increase your dose go back to the endocrinologist who treated your Graves' as your case is complex.
It is possible that your thyroid is still being attacked by Graves' antibodies and releasing lots of T3. This is most unlikely as your fT4 is normal for someone without a thyroid and on 125 mcg levothyroxine. In any event your case justifies an fT3 test. Tell your GP fT3 needs to be done because of your Graves' and inconsistent TSH / fT4 result, or get a referral to an endocrinologist. If they are reticent they could telephone their local endocrinologist for advice.
• in reply tojimh111
I have Hasis and my doctor sent a referral request because I was still symptomatic (worse) after decreasing thyroxine, when results got back within range. The endo's response was a refusal because my results were now within range! 😣😡
Sadly not all endo's have a clue either
It is disgraceful that endocrinologists don't take more notice of patients' clinical symptoms when hypothyroid. A dose of thyrod hormones that reduce all clinical symptoms is the aim not to get results somewhere 'in range' which I think they believe.
Thanks for replying jimh111. The gp will definitely not increase my levothyroxine. All they all want to do is lower it! I’ve been asked to see the doctor but I’ve cancelled the appointment as I just know they will. Can I insist on staying on the dose I’m on and a referral?
I don't think you can insist on anything in the NHS - although you can try. But, in the end, it's the doctor that writes the prescription, and he can write what he likes! Although the NHS pays lip-service to informed consent, and shared decision making in your treatment, basically, it thinks all patients are idiots and not capable of understanding what's going on. And most doctors still think they're god. So, it's difficult. But, you could stir up a fuss by writing to the practice manager, explaining all that's been said on here, and expressing your belief that your doctors doesn't know his thyroid from his elbow - in polite terms, of course - and see if that gets you more informed treatment.
Hi, would it be worth writing a letter stating your case and explaining in as factual as possible terms why you think you should have a trial of increased dose? Offer some actual evidence too. They have to keep your letter on file and their response too. Ive had better success with letters than in person 
Me too ☹️
Hello Argie
I am with Graves Disease and had my thyroid ablated with RAI back in 2005.
Approximately 8 years on, I became very unwell, as I believe this is when my thyroid eventually " gave up " the struggle to function completely.
I was on monotherapy with Levothyroxine, and dosed solely on my TSH.
My TSH was always suppressed and at 0.01 when I felt reasonable well.
My doctor kept reducing my Levothyroxine to increase my TSH to bring it into range, this action made me more ill, I received no understanding or help, but offered anti depressants.
You can't help where your TSH is, and it is a " uniqueness of Graves " that people will probably have a low, suppressed TSH after the medical intervention of either thyroidectomy or RAI ablation.
Graves patients are diagnosed by TSI/TRab antibodies that sit on the TSH driving it down, and that's the reason you were overactive " hyper " in the first phase of this illness.
This overactivity of your thyroid, causing you to be unwell was caused your TSH going too low, driving your metabolism up, and making your thyroid go overactive and giving you horrible, possible life threatening symptoms.
These TSI/TRab antibodies are in our blood, and they can still be there, siting on your TSH driving your metabolism, for months and many years post the thyroidectomy, but since the thyroid has been removed, this Thyroid Stimulating Hormone, is of no value, as there is not now a thyroid to stimulate, and it's function does not respond in a reliable way.
It is therefore essential that you are monitored and dosed on T3 and T4 blood tests with the intention of bringing both these vital hormones into balance, and to a level wellbeing acceptable to the patient, which generally sees both these essential hormones in the upper quadrants of their relevant ranges.
Your doctor is monitoring you on a TSH reading and believing you are overmedicated because of your low TSH, when in fact, the opposite is probably more true, in that you are undermedicated and need a dose increase of Levothyroxine, to bring up your T4 which in turn should raise your T3 and thereby reduce some, if not all, of the symptoms you are suffering.
Thanks again pennyannie, I think I am going to increase the dose to 150mcg of levothyroxine, every other day, to see if there is an improvement. I am always prescribed too much medication on every repeat prescription, so would be able to. I’m just not sure I can face the battle with the gp at the moment. I doubt they will ever realise and then do my own Medicheck bloods.
How did you manage to convince your doctors?
Hey there.
In three words " I did not " .
I managed an increase back up to 125mcg where I felt better than on 100 mcg daily and a referral to endocrinology for a trial of T3. I was denied a trial of T3 as my TSH was suppressed, and yes, it was basically a stitch up.
I was told off for having a suppressed TSH - I offered to go back on 100 mcg and become ill again but with that giving me a TSH in range I would be considered for a trial of T3. There was no acknowledgement or discussion of my having Graves antibodies, and the implications therein. I was simply dismissed and I was too unwell to fight my corner.
I am now self medicating and buying my own thyroid hormone replacement, and staying away from the medical profession. Fortunately, I don't believe I have any other health issues other than those given to me by the NHS as their treatment option for Graves Disease. I now have to manage Graves, hypothyroidism, thyroid eye disease - one of the known consequence of RAI treatment, plus, I believe, some other long term consequences of drinking Radioactive Iodine, for which I have received no help nor understanding from within the NHS system.
I have trialled both T3 with a slightly lowered T4 dosage, and Natural Desiccated Thyroid and they both worked for me. I have decided to stay on NDT as it is softer on my body.
There are a couple of books you might like to take a look at :-
Graves Disease - A Practical Guide by Elaine Moore - this lady has the disease and went through RAI in the late 1990's. She found no help so wrote this book to help other people in a similar position to her. She now runs a Graves Foundation in the States and it is an excellent resource for all things Graves. It has an open forum, much like this amazing site, so we can all learn and read from each other. Elaine Moore is now a leading medical researcher into her own disease and is active member on her own website.
Tired Thyroid - by Barbara s Lougheed - another American lady who has Graves Disease. Her book has the rider of - from Hyper to Hypo to Healing - Breaking the TSH rule :
I believe she now also runs a " blog " under the same heading.
Your Thyroid and How To Keep It Healthy by Barry Durrant - Peatfield. This doctor has hypothyroidism himself, and his book is an excellent reference of everything that this amazing little gland does and we need this information so we can to try and compensate for its loss. It's responsible for your mental, physical, emotional, psychological and spiritual well being. It's the conductor of all your bodily parts, your inner central heating system and your metabolism.
A fully functioning thyroid would be supporting you daily with approximately 100 T4 + 10 T3. T3 is said be about 4 times stronger than T4. T4 is a storage hormone and your body needs to convert it into the active hormone T3. If being treated on T4 alone you have lost the 10 T3 your thyroid produced, and of your daily requirement of T3, and basically down regulated by 20%.of your potential well being.
Your own ability to convert T4 into T3 can be compromised if your ferritin, folate, B12 and vitamin D are not optimal within their ranges, and if hypothyroid your metabolism may not be optimal which will compound this issue.
Some people can get by on T4 alone, some people, at some point in time simply stop converting the T4 into T3 and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient, which generally sees both these essential hormones in the upper quadrants of the ranges.
Personally, I just thinks it's common sense that if there has been a medical intervention and the thyroid surgically removed, or ablated in situ with RAI, that both these hormones need to be on patients prescription for if, and probably when needed.
The TSH test was originally introduced as a diagnostic test to test for hypothyroidism.
Once on thyroid hormone replacement, if you want to do the job properly you need to test all three levels at the same time :- Tsh:T3:T4: and if T3 is in range, you're ok.
P.S. Might I suggest if you do increase your Levothyroxine yourself that you to keep to the same dose every day. If you don't want to jump by 25mcg - cut the pill in half and go up to 12.50 daily, keep everything on a level a level as you can. You know the symptoms to look out for, so slowly slowly, tortoise/hare comes to mind.
It's a massive learning curve, there is so much to take in, I know, it's daunting especially if with brain fog. It's amazing how much you can learn from just reading of others peoples issues, so try not to get too upset and anxious, I know it's difficult as Graves is stress and anxiety driven.
Thank you for all of your advice. I really appreciate you taking time to reply! I will look into the books you mentioned and the advice you gave re splitting the 25 mcg. I think I’m going to give it a try. I might have to find out where you source your levothyroxine from in the future! You seem to have been through so much. I just can’t believe we are in this situation. I do not regret having my thyroid removed for one minute but think it’s terrible how we are just left to treat ourselves, it’s unbelievable x
Hey there Argie,
No problem, but I am self medicating with Natural Desiccated Thyroid.
It is meant to be available on the NHS on a named patient only basis, but finding a doctor who will write the script is near enough impossible.
It was the treatment for over 100 years before the 1960's and the arrival of Big Pharma, blood tests, ranges and the patented new thyroid hormone Levothyroxine.
There are sites where you can buy Levothyroxine - T4, Liothyronine - T3, and NDT.
The price of T3 on the NHS has increased by something like 6000% and that is basically why the NHS will not prescribe, though these self same tablets are just a few euros on the continent.
NDT cannot be patented as it has been in use for many years, and doesn't need to have the " seal of approval " of Big Pharma and Big Pharma like to have a monopoly.
We are living with a two tier system, if you can pay, you get the full blood test and you then pay for a doctor to write a prescription and then you pay for the medication prescribe.
I've paid privately, and received no answers that made any sense. I have tried changing doctors but was met with the same TSH dogma.
Thank goodness for this amazing site, as it has educated me to help myself. There's a lot to read and understand, but you'll get there, and you'll turn things around for yourself, like many of us on here have had to do.
Could that apply to me too then pennyannie as I was thyrotoxicosis twice 5 yrs apart before they wanted to do a total thyroidectomy a year last July. The range for t4 was 10.8-25.5 and I was 95 and told if I hadn’t struggled down to the drs that day I could well have ended up blue lighted to hospital with heart problems. They are still looking at my tsh even though I have no thyroid.
I think we need to be talking on your own post, rather than confuse people on this one.
I mentioned this post because of the article mentioned by jimh111 where he refers to both my post and that excellent reply by Miss Grace.
I can't do cut and paste otherwise I would have " stolen " the article he has highlighted in blue print for you. This may help you with your doctor ?
I think we need to be on your post and not here on Argie's though there are some similarities as you are both with Graves and being monitored on TSH results.
Yea that’s why I asked the question
I’ve posted the below about Levo and TSH before a few times, so apologies if you’ve read it already, but just in case it helps - I’m on T4, and have hashimotos - but graves may similarly distort - the info may be useful in your battle to be well.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, (update - it is now 0.03) my T4 and T3 are about 50-55% of the way through the range (update they are now 70% or more thru range) and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range. (Update - I have continued to increase, my T3 has finally jumped and I now feel well.)
If you have been severely hypo or hypo for a long time then TSH is no longer reliable in the way it reacts when you take T4. Graves will also affect this. My endo (a thyroid specialist) has said to me ‘Let’s forget about the TSH, it’ll probably never recover.’ Magical words!
What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low - same with graves - the whole system goes haywire. Also if you have been hypo for a long time, the feedback loop doesn’t work properly anymore. We also know that you can be taking lots of T4, but if you don’t convert enough of it to T3, you won’t feel any better.
My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important rather than the TSH. Doctors have to realise we are not ‘normal’ and don’t have normal thyroid function - we don’t produce enough thyroxine - so we can’t be measured against the ranges of ‘normal’ people as we take a synthetic version of thyroxine once a day! Our thyroid does not respond to need, we take Levo all in one lump for the day, that also is bound to send TSH low - not rocket science really.
The combination of hashimotos (and graves, rai etc) and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. If he hasn’t - why hasn’t he? He can’t just reduce your meds on a figure and not actually look at you! You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! He has to check you are over-medicated, not just assume you are.
He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient. He needs to turn away from his computer and look at you. I would ask - if you insist on reducing my Levo what are you going to put in its place to alleviate the symptoms I will feel? Will you refer me to an endo for a trial of T3 as you are identifying I cannot get well on Levo as I cannot take the amount I need?
Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿♀️ 🥛
• in reply toMissGrace
That was a great post! I was seeing a locum NHS endo who was totally fine with my TSH of 0.03 as I was on combo of T4 and T3. His main concern was getting balance of meds to s point that relieved symptoms. Sadly for me he's just moved on to a new post.
Michael
LindaC• in reply to
Wow - you hang onto that guy!
Aww! Thank you so much for such an amazing reply. I feel so alone with all this but I know I can pop on here and get some great advice from you lovely people 😊.I just wish I could take you all with me to my appointment! I think I might just ignore the doctor and increase my dose myself to 150mcg every other day, to see if this helps. I doubt they will even realise if I don’t make an appointment. They keep prescribing me extra 25mg of levothyroxine every time I get my repeat prescription so I would have enough to do that. I’m definitely not over medicated, I know that feeling only too well. Thanks again xx
Great Information! Wish all doctors were this knowledgeable
Fully endorse what MissGrace has written. Also with pennyannie but one minor pedantic correction: -
TRAb do not 'sit on the TSH'. TSH is a molecule, TRAb are antibodies that stimulate TSH receptors. The thyroid has TSH receptors that respond to TSH and secrete thyroid hormone, the thyroid mistakes these antibodies for TSH and so secretes too much hormone.
It is likely that you secreted a lot of hormone whilst under active Graves' and this down-regulated you axis. Sometimes the axis recovers after several months, sometimes it never does. So, TSH stays much lower than it should be.
A further technical point is that the pituitary itself has TSH receptors, presumably so that it has an idea of how much TSH it is pumping out and can regulate it a bit. These pituitary TSH receptors can be affected by TRAb also, these antibodies tell the pituitry there's lots of TSH around so don't produce so much.
It's detailed in this technical study academic.oup.com/jcem/artic... (I haven't read the full paper yet). The essential words are 'We conclude that TSH receptor autoantibodies can directly suppress TSH levels independently of circulating thyroid hormone levels'. So, they are saying Graves' antibodies can cause a low TSH. No need to study this paper but if your doctor gives you grief you could plonk it on their desk.
The essential point is that in many cases of Graves' TSH is no longer a reliable indicator of thyroid hormone status and should not be relied upon.
I take a huge dose of T3 only. My TSH is no more, my FT4 likewise and my FT3 is heading into orbit. Yet I am recovering with careful monitoring and with no signs of over medication! I have Thyroid Hormone Resistance!
I understand why this is because of advice here and personal research but my GP doesn't want to know (he's "not supposed to know these things"....and clearly doesn't want to learn) and the endo I saw a couple of times couldn't explain this despite the fact I had shared my findings with him
Big mistake....big ego!
Being in a group that does not respond to basic LT4 treatment can be a very lonely place as I discovered ...until I found TUK and others in a similar situation
I'm not surprised you are confused... but
you have now come to the right place for help.
TSH, after initial diagnosis, is just a red herring!
Good luck
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