I had thyroid cancer 2017 and had two surgeries to remove my thyroid and the cancer. Then two radio active iodines. Initially I was well on 125mg, then I was reduced to a 100 mg. Then again to 75mg TEVA in 2019 and I have have just realised that this is when my T3 dropped to the bottom of the range despite my TSH being very suppressed and my T4 at the very top of the range. I fought to get T3 and ended up going privately. Now my T3 is up at 5 out of the 6.8 top range. However I’m still nauseated every morning, awake feeling like I’ve not slept. I ache like crazy and sweat. My vision is so blurred. I have an upset tummy all morning, my memory is shocking. Even though my T4 is now down at 16 (top range 22) my T3 is in range my TSH is abnormal at 0.01. I take my t4 every morning at 7:30 away from caffeine. I’m suddenly thinking is it a TEVA brand problem I became unwell looking back when I started the 75mg TEVa brand. Can’t believe I didn’t click until reading the posts re TEVA levo! For 3 years I’ve been chronically fatigued and had to give up work I hadn’t even thought it might be the brand! I am literally a shadow of who I used to be! Could I have your thoughts! Thank goodness for this site. Love to you all 💝
Teva 75mg Levothyroxine- So poorly!: I had... - Thyroid UK
Teva 75mg Levothyroxine- So poorly!
My medical story is similar to your. I only feel well when FT3 very near top of range. It’s 6.2 at moment
Were you on TEVA? When you were lower T3 were you breathless too💝
I was on TEVA. Very breathless when FT3 low. Not sure you can connect the two though. I think it was poor conversion between FT4 and FT3. I don’t cope well with high FT4 😻
Breathlessness is a symptom of low iron levels and that includes ferritin :
sootster, It certainly could be the levo brand that is making you feel so poorly.
Lots of people cannot tolerate Teva levothyroxine, and your symptoms of nausea, upset tummy etc might be caused by the mannitol in Teva levo.
The only way to find out is to get a different brand prescribed asap. That might mean getting a combination of 50mcg and 25mcg tabs instead of one 75mcg tab, so you'll need to talk with your GP about a new prescription.
Currently the only available 75 microgram tablet is from Teva. (Another one might appear sometime - it has been licensed but no-one has yet said they are getting it.)
To switch from Teva you will need a new prescription. One which specifies 50 + 25 - or increases you back to 100 - or something like that.
I'm not keen on using a formula to decide on dosing. However, every so often it can be useful to look at a dose from that direction. Just to get some perspective.
The most widely quoted formula is 1.6 micrograms per kilogram (it is what NICE include in their guidance). Thus a 75 microgram dose equates to a person of 47 kilograms. Or a bit under seven and a half stones / 104 lbs.
Gosh I’m 64kg so 75 is so low, I know I take two doses of 5mg T3 but I just don’t understand why I so suppressed! Thank you 💝
sooster
I know I take two doses of 5mg T3 but I just don’t understand why I so suppressed!
It's because you take T3, it's just what it does.
I’m 64kg so 75 is so low
The dose by weight for Levo is suggested as a started dose when newly diagnosed, to be adjusted as necessary. When on combination Levo plus T3 then we have to find out optimal levels of each hormone which involves a lot of time and patience and tweaking of each hormone replacement independently and giving it time for levels to settle before making another change.
Some of us are fine with low FT4 as long as FT3 is in upper part of range, some of us need both reasonably well balanced over half way through range. It's just something we have to experiment with and find out for ourselves. There are no rules.
Even though my T4 is now down at 16 (top range 22) my T3 is in range my TSH is abnormal at 0.01.
When doing thyroid tests we advise last dose of Levo 24 hours before test and the day before the test split T3 into two doses (or three depending on how much you take) and take last dose 8-12 hours before the test.
Thank you that’s so helpful. I need more tweaking and patience! 💝hate I’m getting no support off NHS just in process of trying to get it on NHS now I’ve shown my levels have come up on T3
Sorry if I confused - with T3 in there as well, that is different. I was trying to give you some sort of scaling.
Taking T3 suppresses the TSH - and just another reason why the TSH is a totally unreliable measurement of anything and must not be used in isolation as a measure of anything.
Tirosint has a 75 mcg capsule
True. But Tirosint is effectively not available in the UK.
As the original poster is located in the UK I decided not to consider non-UK products. 
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
From Dropbox:
dropbox.com/s/wfhrlmb5983co...
From Google Drive:
ESSENTIAL to test vitamin D, folate, ferritin and B12 if not tested recently
What vitamin supplements are you currently taking
Just had them tested and my ferritin and folate are low range normal so just started supplementing. My ferritin had dropped from 150 to 46 and folate 10.9 to 5.9. D3 ok and B12 good too. Don’t know why my ferritin has dropped so much since my Thyroidectomy. Thank you for your help 💝
Being under medicated for thyroid tends to lower vitamin levels, especially ferritin
Look at increasing iron rich foods in diet
Are you currently taking a daily vitamin B complex?
You need to get TSH, Ft4 and Ft3 tested together
Monitor My Health Is cheapest
ALWAYS test thyroid levels early morning, before 9am and last dose levothyroxine 24 hours before test
Day before test last 5mcg T3 approx 8-12 hours before test
Is this how you do your tests
Many, many members on levothyroxine plus small dose of T3 find we need Ft4 and Ft3 at least 50% through range minimum (and often higher than this )
FT4: 16 pmol/l (Range 11 - 22) 45.45%
Hello Sooster :
Your TSH is not abnormal :
What is ' abnormal ' is living without a thyroid as we were designed to have one !!!
The TSH relies on your HPT - ( Hypothalamus / Pituitary / Thyroid ) - axis being complete - BUT since you have had a medical intervention and your thyroid surgically removed this feedback loop is broken and an unreliable measure of anything.
The TSH was originally introduced as a diagnostic tool to help identify a patient suffering with hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement as then it is essential to be dosed and monitored on your Free T3 and Free T4 results.
We generally feel at our best when our T4 is up or heading towards the top quadrant of the range as this should in theory convert to a decent level of T3 which is the active hormone that runs all your bodily functions.
A fully functioning working thyroid would be supporting you on a daily basis 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.
T4 - Levothyroxine is basically a storage hormone that needs to be converted by you body into T3 the active hormone which is said to be around 4 x more powerful than T4 .
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 stop some of these processes, we can do something about some of them
Some people can get by on T4 only :
Some people find T4 doesn't seem to work as well it once did and find by adding back in that little bit of T3 that their own thyroid gave them, making a T3/T4 combo, their health is better restored.
Some people can't tolerate T4 and need to take T3 - Liothyronine - only.
Whilst other people find their health better restored taking Natural Desiccated Thyroid which contains all the same known hormones as the human thyroid gland and was the successful treatment for hypothyroidism for over 100 year and derived from pig thyroid dried and ground down into tablets referred to as grains.
20 odd years ago all these options were readily available through your doctor if T4 didn't relieve your symptoms but now should you wish to explore these further options you will need a referral to an endocrinologist, who may or may not consider you ' ill enough ' to treat on the NHS as it has become a post code lottery.
Thyroid UK, the charity who support this forum hold a patient to patient recommended list of sympathetic endos and specialists whom you would be ' better placed ' to see if you wish to ask for a referral, there maybe someone in your area, and you can ask for feedback on someone you are considering through the Private Message facility this forum offers .
thyroiduk.org - where you can read further around all things thyroid and Teva feedback.
Your knowledge is amazing. It’s been 5 years since my Thyroidectomy and I’m just getting worse. I can barely get out of bed in a morning and have zero energy. Even with the addition of T3 and what seem to be normal levels. When my t4 was at 25 I was well but they reduced my dose due to my TSH and it’s now 16. Could that be why I’m so tired. Last bloods:
TSH is still the same at <0.01. Normal range is 0.27-4.2
T3 is a little lower at 5.0 (was 6.6). Normal range is 3.1-6.8.
Your T4 is a little lower at 16 (was 22). Normal range is 11-22.
Just so concerned about my findings about TEVA too I wake up every morning with headache and feeling so weak.
Started the mercury pharma tablets this morning so hoping that helps. My surgeon goes on TSH and refuses to discuss T3 and will not refer me to an Endo.
Thank you for your support
Well I was in a similar situation though have Graves Disease and had RAI thyroid ablation back in 2005 becoming very unwell around 8 years later, and found myself on this forum while searching for " low ferritin " - and what that means.
I was refused both T3 and NDT through the NHS and now self medicate and am much improved and now take a yearly blood test more to see where my ferritin, folate, B12 and vitamin D sit, as I need to supplement all these to remain as well as I am.
I'm not concerned that my TSH is at 0.01 :
I don't care where my T3 or T4 sit -
Depending on the timing of the blood draw you can get lots of different readings -
but I'm not a mathematical equation - my brain and body now feel connected, and I am much improved both physically and especially mentally and psychologically out of a system where you are not listened to and the blood tests results are seen as more important than one's Quality of Life.
Gosh your words made me cry. I just feel so alone with this and feel totally unsupported by the NHS. I’ve tried to raise my concerns and they just knock me back saying there must be another cause for my fatigue. My confidence is shot. I know it’s my thyroid well lack of one. Why are they so arrogant? Feeling so sad. Hoping to see an improvement now I’m on the new brand. Thank goodness for you guys here on the forum 💝
Well, yes I fully get it as i was all alone with all my health issues:
I'm afraid you'll need to start reading up for yourself and if I can do it so can you.
I am dyslexic and when my cognitive functions slowly started to decline in around 2014/15 I thought i was looking at dementia.
My ferritin, when tested in 2015/6 came in at 22 and that was when I fell into this forum and needed to write out everything I was reading several times over to understand what i was dealing with only to forget it all unless I read it out loud several times.
Several A4 exercise books later I started to understand things and so far so good.
There is 1 goto book for me and written by a doctor who has a thyroid health issue.
Barry Durrant-Peatfield wrote " Your Thyroid and How To Keep It Healthy " for patients and he resigned from the profession due the restrictions placed on him as to how he should ' treat ' his patients.
It is an easy to understand sometimes, funny, insightful read and although it may sound counter-intuitive since we haven't a thyroid any longer to keep healthy, we do need to compensate for this amazing little gland and this book is totally worth dipping into.
P.S, everywhere I read said ferritin needs to be at least over 70 for T4 to be able to convert to T3 - and that was my starting point, along with supplementing my other core strength vitamins and minerals and this alone made me feel so much better as well detailed on this forum.
P.P.S. The Thyroid UK website has a recommended books section - if that's of help to you.
Going to get the barry Durante book 👍
Please, I'm sorry, that wasn't my intention - I'm just upset for you being left out on an limb like this.
No not upset with you, I’m so grateful and your words really touched me. Think it’s someone understanding 💝
Yes, that's why I stretched out :
"....my brain and body now feel connected,"
Thanks for typing this sentence. So powerful.
@sooster - all the best to you. I am so sorry you are going through so much. Here's hoping this is the beginning of some beneficial changes for you. A moment to exhale and have hope.
(I had a total thyroidectomy recently & am suffering through medication as well)
Just reading your posts and realise I replied to your last long list of curiousness and following your TSH jumping about " jack flash style '"and why we must not be dosed and monitored on this short cut blood test reading :
Yes you did. And I appreciated it greatly.You answering me then has nothing to do with my confusion now on this one issue. I would not ask again - I am merely just still confused about the one point I posted above. And reading here made me remember. Ie. If the TSH is irrelevant after a thyroidectomy, why do they monitor it so closely with cancer for it to be suppressed? Truly just trying to understand that one point pennyannie.
I remain beyond appreciative of all your knowledge & guidance here & elsewhere.
Just resent a message i thought I'd sent over an hour ago :
Thank you so much 💝
Just thinking - if this new brand of T4 causes the same problems there is liquid preparation :
If liquid T4 causes the same problems you may need to consider going T3 only or trialling NDT :
First and foremost work on building up to optimum your core strength vitamins and minerals as no thyroid hormone replacement whether it be T3, T4 or NDT works well until your core strength is strong and solid.
I now seem to feel at my best with my ferritin at around 100 : folate at around 20 : active B12 75++ ( serum B12 500++ ) and vitamin D to around 100:
Yep I will look at other options for medicating as I’m going round in circles 💝 thank you
"The TSH relies on your HPT - ( Hypothalamus / Pituitary / Thyroid ) - axis being complete - BUT since you have had a medical intervention and your thyroid surgically removed this feedback loop is broken and an unreliable measure of anything."
Pennyannie,
Curiosity.
Where does a suppressed TSH for a cancer patient fit in the paragraph above? Meaning how can it be broken after a thyroidectomy if people are closely monitored to keep the TSH very low? I am just not understanding. Thank you for explaining.
This is strange as I thought I'd replied but it's disappeared :
I believe when there has been a surgical intervention for thyroid cancer the thinking is that the TSH should be kept suppressed for around 5 years as this should stop the reoccurrence of cancer cells - after 5 years it seems there is no benefit to maintaining a low/suppressed TSH.
How one get a low/suppressed TSH is by monitoring and dosing on T3 and T4 blood test results at a high enough level to relieve symptoms of hypothyroidism and with the patient being optimally medicated.
I understand that hospital patients do get dosed and monitored on T3 and T4 blood test results and managed with either T3, T4 or a combination of both.
I also read that any dose of T3 will suppress a TSH - whether 5 mcg or 50 mcg so that just shows how unpredictable this TSH reading can be.
I think the issue is more one of primary care treatment as doctors seem to be dosing and monitoring on just a TSH reading and believe that the TSH has to be in range and this results in people being under medicated and doses reduced.
After surgery or thyroid ablation the HPT axis is down regulated and can't be trusted and T3 and T4 bloods must be done to assess thyroid hormone replacement treatment with the aim being to have T3 and T4 balanced in the ranges at around a 1/4 ratio T3/T4 :
Thank you.
"I also read that any dose of T3 will suppress a TSH - whether 5 mcg or 50 mcg so that just shows how unpredictable this TSH reading can be."
This is so helpful to understand, thank you pennyannie. And for endocrinologists that don't believe in the merits of t3, I guess they just keep upping the t4 and hope it works.
I guess so - but T3 is totally different to T4 and not the same - when I started self medicating I took my T4 over range but I didn't get a better T3 reading but a lower reading and a big headache.
Since your lost your thyroid and therefore lost that T3 your thyroid naturally supported you with, I just feel it probably needs reinstating - and especially considering it's around 4 times more powerful than T4 .
I sometimes talk of a seesaw - T3 sits at one end with T4 at the other, and the most fun and best functioning seesaw is when both these 2 seats are of equal weight so they can respond to each other and give each other the bumps, rather than one being stuck down in the mud with it's partner high and dry up in the air unable to do much about the situation.
You can liken the thyroid to being your body's engine, and now without the thyroid gland there to regulate our power and energy levels throughout the day we need to manually dose, balance and adjust and it can take time to get things back on track.
The ranges are for well people, we are not there, we haven't a thyroid gland and there are no guidelines for us - we are all just lumped together irrespective of how we became hypothyroid and the average doctor just recites the dogma from a computer screen which hasn't even been programmed with your particular health issues.
Hi Sootster ~
I had a TT in 2016 due to thyroid cancer. TSH becomes totally irrelevant to our response to thyroid hormone replacement except to maintain a suppressed TSH to lower the risk of recurrence. It's necessary to guide treatment by Free T4 and Free T3 levels.
Many of us find we do best with Free T4 in the lower third of the range and Free T3 at least midrange or higher. This often results in a very low TSH level — mine has been undetectable for six years and my doctors are fine with that as long as I don't have any signs of "over-medication".
Some people have found they do better if their levothyroxine is taken at bedtime (without having eaten for two hours and of course no warm milk). Improved absorption has been shown in studies.
The issue of doctors not understanding about thyroid seems to be a global problem but we do have an easier time of it in the US, though it can still take going through several doctors before finding one who actually sees us as a person.
You're not alone — you're welcome at any of ThyCa's support groups which meet on Zoom and this year's conference is in September — thyca.org. (Last year over 1300 thyroid cancer patients, advocates and providers attended from all over the world.)
Patti in AZ
Thank you that is so so kind! I now know I need to work on my ferritin and folate. All the information is invaluable. I will look up the Thyca meetings too. Bless you 💝
Hi Sootster,It does sounds like you've sussed that it is the Teva brand making you ill. However, I wondered if you have had your calcium levels checked lately? Are they low? Could your parathyroids be struggling after maybe being damaged in your surgery? Just a thought. I'm sure you will have had calcium tested in your last blood test check up.
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