I had my thyroid removed 2 years ago due to a pre-cancerous nodule. I am on 100mg of Levo and weigh 74kg having put on 10kg since the op. I have never had the dose increased as blood tests normal. A month ago I started experiencing in order of occurrence:
Numb feet and aching upper arms
Slight incontinence
Numb legs - balance off (fell over)
Very slow movement
Numb hands
Very painful thumbs (developed arthritic nodules)
Exhaustion climbing stairs
Brain fog
Numb pelvis
Numb stomach
Constipation
A&E performed a lumbar MRI which was clear and a blood test to measure T4 and B12. All came back fine. Blood pressure was fine too (but I have a low one naturally so could still have been raised)
A neuro physio friend is convinced it’s my thyroxine levels but my doctor is refusing to increase my dose to see if my symptoms subside. Is she right to refuse or is it bad practice?
Written by
Cazza0104
To view profiles and participate in discussions please or .
Most feel well with FT4 In top 3rd of range, FT3 at least mid point of lab range.
Usually TSH is low in range eg under 2, nearer 1 when level are higher in range.
Your FT4 might be low in range or your conversion might be poor so your FT3 might be really low.
100mcg sounds on the lower level for replacement dose.
You are entitled to copies of results either printed with lab range on online access. Obtain a copy so you can see exactly what’s been tested and exactly what the result are.
I’m getting my levels back on Monday during the GP appointment. Please could you tell me what the ranges are that I should be looking for? Thanks so much!
Lab ranges vary so you can only accurately interpret results once you have the full information.
One example might for FT4 might be (12 - 24) but another lab might be (7 - 17). In theory if the sample was tested by both labs the % through range should be the same, but this would give different number.
There idea of fine and our aim for optimal are often quite a considerable way apart, have they also tested your Vit D, Ferritin and folate? Important to get these to a good level along with B12
Worth getting a private test to check your fT4 and fT3 levels, plenty of deals on at the moment with Medichecks and Randox... or you could use Monitor My Health which is an NHS Lab
In my experience, unfortunately yes. And if they do raise it, they then try and lower it as much as possible. My neighbour's GP told her that the aim was to get her off thyroxine completely - and she also has had her thyroid removed. You are often better seeing an endo, but in my case, our endos are diabetic specialists and know a good deal less about thyroid problems than I do. I'm sorry, but its a constant battle.
Thyroid hormones are essential for life. They aren't an optional extra.
I would avoid that GP permanently if I was in your neighbour's shoes. And it might be worthwhile to check they are actually a GP and not one of the other fake doctors, e.g. Physician Associates, Nurse Practitioners, and Paramedics.
This link may be to a very old article (published 1949) :
if left on too low a dose levothyroxine then very likely to have LOW vitamin levels as direct result of
Being hypothyroid results in low stomach acid and poor nutrient absorption and low vitamin levels
Low vitamin levels can cause lots of these symptoms
First steps
get hold of all recent test results, see EXACTLY what’s been tested
Very likely just TSH and Ft4 which is totally inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
VERY important to test TSH, Ft4 and Ft3 together
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
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
The blood test I had at A&E revealed normal B12 as well as ‘thyroxine levels’ so yes, I need to see the actual results to see what was tested and to understand why the GP is refusing to raise my dose. A&E took bloods 3 hours after I took my morning dose.
I take a multivitamin containing B12 but my symptoms came on after a 2 week holiday. I didn’t take my vit supplement with me (but ate very healthily) which may have been the issue (I wasn’t aware of the importance of B12 as I’ve had no issues before, I’m embarrassed to admit).
When a doctor says 'normal', all they mean is that the result is somewhere within the range. But given the extent of most ranges - especially B12 - just being anywhere within the range is not the same as optimal. With a serum B12 test - which is more than likely what you got in the hospital - the level needs to be at least over 550. However, as ranges often start around 100, if it is 101 they will say 'it's normal'. It isn't.
And if you had the blood draw 3 hours after taking your levo then that test is null and void because all it will have tested is the dose you just took at its peak, not what is usually circulating in your blood. So, that could be why your doctor is refusing to increase the dose, you had a false high result. But, they cannot seem to get it into their heads that taking blood just after taking your levo will not give you the same result as taking the blood 24 hours later. They insist the results will be the same and it doesn't matter. Doctors have very little understanding of thyroid or of interpreting blood test results.
When you say you take a 'multi-vit containing B12', do you mean a B complex with just Bs in it? Or a pill containing all the vitamins plus iron plus iodine plus etc. etc. etc.? We do not recommend the latter for many, many reasons, but if it contains iron, that will block the absorption of most of the other ingredients.
If you mean a B complex, that is fine because just taking one isolated B vit - B12 for example - won't do much for you. The Bs all work together and need to be kept balanced.
I'm afraid it doesn't matter how healthily you eat, you can still be deficient in nutrients when you're hypo because you will have low stomach acid. That means you will have difficulty digesting food and absorbing nutrients. That is why so many of us take so many supplements.
I would not take the b complex, until you have your original b12 number in hand (and folate levels). Just in case someone asks for another blood test (EDIT: I read further down & see someone has already). You do not want it is even higher, and they take that as 💯 not having an issue. Doctors make a ton of erroneous choices around b12 - they just didn't get enough hours of study on it and/or inconsistent teachings - so best for you to have the number in hand and go from there. You might need shots & want to have the ability to go after that if it is your b12 (that aching could be vitamin d in tandem. I had very low both of them & if someone gently touched me it would be painful - that was the d)
I also had a thyroidectomy and had periods of similar symptoms. Could be so many issues. All the best getting them to figure it all out.
Your symptoms just got worse, correct? They were still present to a lesser amount before your vacation?
Absolutely get the numbers. The b12 can be barely into the normal range & still wreak havoc from head to toe. In fact, a few women over on the PAS section had high b12 in the serum originally, but it is not getting to where it needs in the body. Telling you that in case your numbers are not only in normal range but well into the normal. You should post over there & get the ins and out.
Also the incontinence could fall under many issues but just putting it out that sleep apnea is one of them, and many people do not know that.
It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and not a TSH / T4 reading or a TSH blood test seen in isolation - which may well be what is happening in primary care.
We generally feel best when the T4 is up in the top quadrant of its range at around 80 % with the T3 tracking just behind at around 70% through its range and at around a 1/4 ratio T3/T4.
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 mcg -
T4 is pro-hormone and needs to be converted in your body into T3 which is the active hormone that runs the body and is around 4 times more powerful than T4.
Conversion can be down regulated by non optimal levels of the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D - and inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing will also impact how well you are able convert T4 into T3 .
Some people can get by on T4 only medication - Levothyroxine.
Others find that at some point in time T4 seems to not work as well it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they feel improed and their T3/T4 hormonal balance is restored.
Some can't tolerate T4 and need to take T3 only - as you can live without T4 but you can't live without T3.
Whilst others find their health restored taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and the original, successfully used treatment fr hypothyroidism for over 100 years before Big Pharma launched ( on the back of NDT ) synthetic T3 & T4 treatment options in the middle of the last century.
NDT is derived from pig thyroids, dried and ground down into a medically graded powder and then made up into tablets, referred to as grains, or into capsules.
Currently in primary care doctors only have T4 and anti-depressants at their disposal and you will need to be referred to a NHS endocrinologist to be prescribe either T3 or NDT -
and it has become something of a post code lottery, as in some areas of the country ICB / CCG financial constraints seem to take precedence over patient optimal health outcomes.
Due to cost I very much doubt NDT will be prescribed to new patients and of course if you can afford to go Private you will find a very different landscape -
Thyroid UK hold a list of recommended thyroid specialists both NHS and Private - which you might like to have to hand should you face difficulties in the future -
Thyroid UK also has a very comprehensive list of symptoms of hypothyroidism which you might like to tick box ready to discuss with your doctor as when suffering with that horrible brain fog its difficult to hold a conversation for any length of time -
So first off we need to see a full thyroid blood panel to include the TSH.T3.T4 + inflammation, antibodies and ferritin, folate, B12 and vitamin D and around 10/11 biomarkers -
if your doctor is unable to do this for you there are several Private companies who can - as listed on the Thyroid UK website - where you will find all things ' thyroid ' -
and is the charity that supports this patient to patient support forum. thyroiduk.org -
once you have back the results and ranges just start a new post with all the information and you will be talked through what it all means and advised of your next best step back to better health.
Normal means that your blood test results are within the ranges - and hypothyroidism is experienced within these ranges -
We need optimal levels of T3 and T4 within the ranges which is where you feel at your best and have back ' your you ' and feel at your best to carry on uncompromised with the rest of your life.
Well done - when you have the results and ranges simply start a new post sharing the results and ranges -
Did you take your T4 this morning before the blood test ?
If so we will get a false high reading - but better than nothing -
We generally advise a fasting , early morning blood test with you just taking water o/night and taking the daily T4 medication - after the blood draw -
and for maximum absorption and conversion of any thyroid hormone replacement - we need to take it on an empty stomach and wait around an hour before eating or drinking anything other than water.
Any supplements need to have been stopped for around 7 days prior to the blood test - o we measure what your body is holding rather than that recently ingested and if any supplements contain biotin this can interfere with the assays used at the laboratory and may/can give false readings blood test readings.
Unfortunately I took it at 5.30am with the blood test at 11.45. I didn’t know the GP would offer a test at such short notice - the receptionist had said the 24th was the earliest. I did ask him about a false high reading and he said it wouldn’t affect Free T3 result which is the important one in this case…
Oh well - let's see what comes back - don't be upset - it's a big learning curve - so let's just go one step at a time -
just a shame it even had to come to this -
Do you have access to your NHS records held at your surgery - if you don't just ask the receptionist for the necessary forms to fill in and return -
if online - maybe look back and see what your thyroid bloods test results / ranges have been in the past and share these with forum members - even allowing for a false high T4 reading - we can get an idea of what's going on.
thanks so much for such a detailed answer. I am very lucky to have private health and was referred to a neurologist initially by the Aviva virtual GP. I am at a loss to understand why she didn’t suspect hypothyroidism but she did say she was confused by the symptoms! The private neurologist has a 3 month wait list so that why I went to A&E. I can now request another virtual appointment to get an appointment with an endocrinologist but that could be months too. Is it acceptable for the GP to refuse an increased dose to see if I improve while I am waiting to be assessed privatel
In my experience the NHS doctor is led by what is advised on the NHS computer screen - and my doctor was said to be the ' thyroid lead ' in a well respected group practise.
Doctors work to guidelines and I believe the current guidelines are not fit for purpose and- Thyroid Uk - who sponsors this forum - have been fighting this cause since I 've been reading on this forum which was in around 2015 -
I have had to go it alone and self medicate as I was refused T3 and NDT on the NHS in 2018 - details on my Profile page - just press the icon alongside my name - ( or - for that matter - any forum's name - if interested to read how they ended up on this forum ) it was a very stressful time for me and I do not wish to start thinking about it all -
needless to say I am much improved buying my own supplements, thyroid hormone replacement and running my own yearly full thyroid panel and staying away from mainstream medical for my thyroid treatment -
and why I now come back on here to give back - and help others who are struggling and getting nowhere in the system we believed was there to help us improve our health and well being.
Yes I insisted on being referred - the endo was a Diabetes Consultant - was refused any treatment options = T3/NDT - told I was over medicated as my T4 was at the top pf the range and my TSH suppressed.
The year previously I paid to see the only Endo in my area who was/is actually the Head of the Endocrinology Department at our one and only hospital -
I was too ill to travel further afield :
He had no comment to make about my symptoms - which I believe were consequences of having RAI thyroid ablation at this only hospital some years earlier or my treatment which was on TSH only results -
I paid to find out what my T3/T4 results actually were -
and he suggested - I go on the net - buy what I want - and he would treat me Privately -
I was so angry and thought - ok I'll go on the net and I'll Do It For Myself rather than keep seeing you - the Head of the Endo department where all my treatment had been carried out !
Well yes and why I'm there trying to help others caught up in this stupidity.
What you may not realise is that at the turn of the century your doctor had T3 and NDT in his box of tricks to prescribe to you if the cheapest option T4 - did not restore your health and well being -
and likely had T3/T4 blood tests and could treat you as s/he saw fit :
NDT is on the NHS blacklist and basically not to be prescribed to new patients -
and once upon a time ( 10 years ago ) the NHS purchased T3 from only 1 company who were a purchased by. I think, by various a hedge funds and ultimately the price of T3 rose by some 6000% and the NHS blacklisted T3 and actually withdrew T3 from patients already well and settled on this treatment option.
T3 is now not on the NHS blacklist though getting T3 prescribed as a new patient has become something of a NHS postcode lottery - there are several brands of T3 now in the market place and the price has reduced -
The argument is there is no research suggesting T3 or NDT are superior products but when you haven't a thyroid - and have ' lost ' both T3 and T4 thyroid hormones - it just seems common sense to me to replace like with like -
NDT was the original and successfully used treatment for hypothyroidism until the 1950/60 when Big Pharma launched its cheaper, synthetic treatment options and then went about claiming market share on the back of NDT.
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
This blog has the abstract of this paper plus link to the original full paper. Also includes some extra links to a video and some other related information.
Don’t despair- you will get better , but must take control. I , too, had my thyroid removed and put in weight . My numbness started in the toes ( before thyroidectomy) and gradually progressed affecting my feet up to the ankle level. Investigations showed that bit is due to the compression of the spine but I suspect it is also because of the thyroid problem. I do stretching exercises for my spine every day, prescribed by a specialist physio and they relieve the symptoms . I also have slight incontinence, so do pelvic floor exercises as well. I keep having to remind my Endo to test the key vitamins . Overall, good diet, gentle daily exercises and watching vitamin levels should help a lot . I have switched from Levo to Armour thyroid , which helped with my low calcium levels, improved my hearing and vision but I am resigned to the fact that without the thyroid, I shall never be completely back to normal. Accepting it, taking good care of yourself , practicing mindfulness and staying in a positive frame of mind can get you to about 80% of feeling normal, I have found. It is a journey, so be patient . Good luck!
Hey there again - you need to make sure you reply in the forum members Reply Box - as then they get a message telling them they have a message -
as it stands now - unless these other forum come back and look at your post again they don't know if you have read their replies -
you can use the More icon and go into Edit and then if you type @ directly before you start to type their username a drop down list appears where you can select their name which then turns blue - and means the forum member has been notified.
After I had my thyroid remover back in 2015 I too was put onto 100 Levo. I only weighed 62 kilos but the amount was too low for me. After only 6 months I could not even get up from the floor without help. I knew nothing about the thyroid and was lucky to find and join this site. I found about the importance ot the FT3 result.
Your dose looks way too low. Low T3 causes lots of aches a pains and can make life hell. Good Luck with getting it sorted out.
I had the numb legs and lack of balance when my Vit D was in my boots. Numb legs are gone and the balance is improving unless I turn sharply, all by taking lots of Vit D. Loads of info here on Vit D which I learned and followed. GPs generally will not test Vit D as the test is expensive and I had to push for over 5 months, but with private care they may do it.
This site is so brilliant - it changed me from a cold slug to a warmish worm!
Hi Cazza, all of the above plus this 2 cents worth:
What you could do for yourself before you embark on the inevitable frustrating fight with your Doc or Endo is to go get your selenium level checked. If it is low, go get some selenium pills or eat Brazil nuts. You need selenium to convert your T4 to T3 (it is the catalyst for that reaction) and all of your symptoms sound like low or non existent T3. If that doesn't do the trick then go back to the doctor (probably a different one because this one doesn't seem to know much) and you will start on the long journey of fighting to raise all of your thyroid hormones to a level that makes you well again. Don't despair, you will get well again, it takes a lot of time, trouble, blood tests and arguing with doctors (lots of them sometimes) I got through 5 before I got a knowledgable one.
Why the resistance to raising the dose to see if things improve? It’s surely cheaper than endless appointments? Adding Brazil nuts to the shopping list…thanks so much!
Yes, I agree. You could try raising the dose on your own. Just a little bit at first (cut your 100mcg into quarters and add a quarter to your 100mcg). It could take a week before you notice any difference (it could also take one hour) but should you feel better, go back to the doc straight away and insist on an increase. When I was on Levo when I first had my thyroidectomy I was battling the same problem as you. My doctor was very cooperative and let me experiment. I found that at about 150mcg of Levo my body started to generate T3 and I felt fine. Problem was that the Endo assigned to my case stepped in and demanded that the doc reduce my dose because my TSH was too low. I was not knowledgeable enough at that time to keep going (with low TSH) so I can't tell you whether that was a suitable plan for me in the long run (I have a feeling that it would have been). I changed to NDT (after a long frustrating struggle) and have lived with unmeasurable, zero TSH for almost 20 years now - and I feel normal. Low TSH is not going to kill you. My philosophy is that if there is any truth to the negative press about low TSH then it will kill me at 90 instead of 95+. That is preferable to 30 years living with unsuitable Levo dose (but suitable TSH level) and the awful symptoms I would have to have suffered.
Doing this had crossed my mind, especially if the GP refuses at my appointment on Monday. I can’t get a private appointment with an endocrinologist until Mid January and I’m desperate to feel better- I have a house full of guests over Christmas.
I am sorry that you are just entering this crazy stuff. Keep going, you will win in the end, it took me two years. This is a great place to learn just about everything and more.
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.
T4 after thyroidectomy 
Low TSH High T3 Normal T4 Total Thyroidectomy
Prozac after thyroidectomy?
15 month after Total Thyroidectomy 
