I have a query regarding the dose of my Levo and what brand to use. After a long struggle with my thyroid, I started off with thyrotoxicosis/Grave's disease (diagnosed finally in August 2018 by GP) - and going completely UNTREATED by idiot NHS endos - I fell into subclinical hypothyroidism and autoimmune thyroid disease/Hashimoto's disease (diagnosed October 2020 by another endo, also idiot but at least put me on treatment). See my blood test results from October and December 2020 further down.
I was prescribed Levo 50mcg in October and I was given the TEVA brand in tablet form by the pharmacist. It has broadly cleared up most of my symptoms but I was struggling with low energy levels and a heart that felt strained. It turned out that I was still pretty deficient in Vitamin D when I returned for the routine blood test, so the endo decided to keep the dose at 50mcg and advised taking Vitamin D capsules at 20,000 iU to take once per week, which I started taking last week, to see how it helps with my energy levels. Its benefits only last about 3-4 days, and I tried supplementing with 2 Vit D 25mcg tablets on the 4th day to little improvement and I decided to take another Vit D 20,000iU capsule before going to bed. Safe to say, it is helping in bringing my levels up and I don't have issues with my heart, unless I seem to be running low in Vit D. I have always struggled with Vit D levels for as long as I remember and have been supplementing it on (winter) and off (summer) with OTC supplements. Last year, I supplemented Vit D with 25mcg/day all year round - sometimes twice a day in the winter months but still finding myself deficient/sluggish.
Since I think I struggle with absorption, I asked my endo whether it would be better to take Levothyroxine in oral solution form and he said it would certainly be worth trying and is in the process of writing out an e-prescription (it takes days to get any request sorted really). I also struggled with IBS for years, randomly became lactose-intolerant in 2018 and the FODMAP diet didn't work at all. I have since gone on a plant-based diet, with meat max 1/weekly, due to difficulty in digesting meat and dairy. Gluten is sometimes a problem but found it improving with treatment and plant-based diet. Since going on treatment, I've been able to eat more meat which I think has improved my iron levels but I'm not sure.
In the meantime, I thought it would be worthwhile to ask whether I should keep taking the oral solution with the TEVA brand or another lactose-free brand? I've read many people struggle with TEVA but I've managed to do well on them, although I am concerned that it contains mannitol and its potential impact on my health in the long run. However, I'm also worried that changing brand might not work well with my body since brands are not interchangeable for everyone.
Adding to that, my next blood test will be in late February/early March and the endo seems to be pretty convinced that the dose might not have to go up, but I certainly am not convinced by that. I'm thinking around 75mcg but depends on the results.
Would appreciate any comments and thoughts on this.
October 2020 results
TSH: 5.5 (0.4 - 4.0)
FT4: 16 (10 - 22)
FT3: 4.4 (3.3 - 6.0)
TPO: >1300 (>60)
TRAB: <1.0 (0 - 1.8)
Vit D: 62 (50 - 178), still classified as sufficient but recommended to supplement
Iron: 5 (9 - 34)
Ferritin: 18 (7 - 120)
Vit B12: 444 (156 - 672)
Folate: 41 (>7)
These were taken with a private lab and just before I had my period (usually when I had the worst flare-ups). I took it in the morning having fasted. No supplements for 5 days.
December 2020 results
TSH: 1.93 (0.35 - 4.94)
FT4: 14.6 (9.0 - 22.0)
Vit D: 64 nmol/L (75 - 150)
Iron: 9.8 umol/L (8.0 - 25.0)
Ferritin: 24 ng/mL (5 - 204)
Vit B12: 592 pg/mL (187 - 883)
I took this test on the fourth day of my period in the morning (fasting and before taking Levothyroxine, no supplements the day before as this test was a last minute arrangement). My idiot endo gave me a diabetes test, which does not measure FT3 or anti-bodies (he also treats diabetes patients) but at least I found out that my liver and kidneys are working fine and my bacterial growth is looking good. He recommended I push up my iron levels since they are in the lower range and continue supplementing Vit D. Endos don't seem to get any better in private, if you ask me.
Should highlight that I took an A-Z supplement until after the December test. I've stopped this now to focus on my deficiencies and to map out what's wrong.
I will order a private thyroid test measuring all the metrics to do around the time of the next test.
And finally, if anyone can read cortisol levels, could you advise if my levels are alright?
October cortisol: 430 nmol/L (145 - 620)
December cortisol: 4.38 nmol/L (<5)
Mainly I'm confused about the decimal point, but am well aware different labs have different values and figures.
Thanks for the help, everyone!
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glowing_cat
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One who is actually aware that TSH should be under 2 on levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
You'd be surprised to hear this specialist appears on the list of recommended endocrinologists with Thyroid UK. Perhaps the list needs a review?
I asked for an increase in the dose in my last appointment but he decided to prescribe 50mcg for six months and wants me to see a psychiatrist to determine why I still have some mood swings and why I'm not "la la la happy all the time". Nice waste of £200 if you ask me (and the useless diabetes test cost even more, which also didn't test T3 and antibodies!).
To me it's blatantly clear that I need a stronger dose but I'm really tired of having to argue with clowns who don't know their trade. I've done this for over 2 years with other doctors who are even more clueless than this idiot.
I'll email and ask for a higher dose. If he does not comply, I'll report him and try to find someone else who might listen
Should add that as a woman in her 20s, my health issues are always dismissed as emotional, when in fact these have a clear hormonal/endocrine link. I've had doctors tell me it's perfectly normal for women to struggle with anxiety, when in fact the very first day I took Levo cleared ALL my symptoms of strong anxiety which severely impacted my life for so many years. I also had greying hair, that another doctor said I would have to put up with all my life, but going on Levo has cleared a lot it.
But on this starting dose, I don't even have the energy to work 5 hours/week. I struggle to understand why they seem to think leaving us on such low doses (or in my case untreated for two years) is such a good idea.
Why are doctors so anti-science and anti-people? It makes no rational sense! Time to sack them all!
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Many people find Levothyroxine 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
Teva, Aristo and Glenmark are the only lactose free tablets
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
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
Is there seriously no one checking on the quality of care that our "cherished" health professionals provide us? I used to have a full-time in the City of London and I would be hounded down if I missed a typo on a report for clients, but doctors are somehow free to let patients die when they are perfectly treatable and able to contribute to society when in good health? Honestly, where's the accountability?
If these doctors had the job I had before I was forced to resign and move in with my parents, they'd be sacked in the blink of an eye. And I certainly think they should be sacked and barred from the medical profession.
Poor gut function due to being hypothyroid can make digesting meat difficult
Iron: 9.8 umol/L (8.0 - 25.0)
Ferritin: 24 ng/mL (5 - 204)
Hopefully humanbean may pop along to comment on these
Look at increasing iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Can't thank you enough for the links, SlowDragon!!
Honestly, I've been eating more meat since taking Levo because I struggled to digest it beforehand (then I consumed lentils, beans and other fortified foods in a bid to raise iron). I think the meat has helped raise my iron and ferritin levels, but not sufficiently enough obviously.
I also take iron supplements that comes with Vitamin C on a daily basis (usually 1/day, sometimes 2/day). I also drink at least one glass of orange juice daily.
My periods have always been on the heavier side of normal. They were very light during my hyper phase but still incredibly draining. The periods have become more normal and I am no longer ill for approx 3 weeks at a time since going on Levo, so it has provided some relief, but the dose is not enough to function as normal.
I tried to get the endo to prescribe me stronger iron supplements in my last appointment but he said to continue with the ones I have. He also said it isn't advisable to do iron infusions now with the pandemic. Any thoughts on this?
Basically, I do everything that is recommended to keep my vitamin and nutrient levels up, but it is never enough, and doctors are somehow shocked by this, yet they fail to treat me. This is the greatest mystery for me.
Re stomach acid: I did feel my stomach became a bit more acidic after going on Levo and I felt some immediate improvements, but that being said, I need a higher dose for the benefits to last long-term.
It's not rocket science, per se, but our doctors might just have to become rocket scientists to understand this simple fact.
Hi glowing _cat, your TRab are within normal range .
These are the antibodies that if over range ,are used to confirm Graves Hyperthyroidism .
Your normal level of these in 2020, combined with the fact that you have now become Hypothyroid, rather point to the correct initial diagnosis being autoimmune Hypothyroidism, rather than Graves .
Autoimmune hypothyroidism often starts with a transient 'hyper' phase , but this is not the same as Graves.
You say the GP diagnosed Graves in 2018, but as far as i know an Endocrinologist usually has to order the TRab test, so unless you had a TRab test in2018 that showed over range , it was probably not Graves.
December 2020 results
TSH: 1.93 (0.35 - 4.94)
FT4: 14.6 (9.0 - 22.0)
These results, (if on 50 mcg for at least 6 weeks ?) show room for an increase in Levo dose, usually 25mcg at a time.
50 mcg is only a starter dose. Most people end up on between 75-125 mcg.
If i were you i would be asking for an increase now based on those results.
I wouldn't want to wait until march before increasing.
FT4: 16 (10 - 22) in Oct before Levo
FT4: 14.6 (9.0 - 22.0) in Dec on 50 mcg......
you will notice that you actually have LESS thyroid hormone now than you did before you took Levo ... this is what happens until you are replacing a large enough dose.
The pituitary gland senses the extra from the tablets, and so sends out less TSH (Thyroid Stimulating Hormone), which then causes your own thyroid production to slow down a bit, meaning you end up with less T4 and T3 than you started with.
Levothyroxine does not 'top up' thyroid hormone , it replaces it. Some doctors don't seem to realise this, and think just giving a little bit is ok, but that's not how the system works.
It's way more complicated than just "give a bit of Levo and stop when results are anywhere in range."
Doctors should initially aim to get TSH closer to 1, and see if symptoms to resolve. and then adjust further if needed.
I think it's too early to assume you have a problem with absorption... the change in your TSH does indicate a response to levothyroxine , but you are just not taking a full dose yet.
Thanks for your reply tattybogle! I agree that I need a higher dose but as I wrote in response to SlowDragon, the endocrinologist was not keen on raising and thought that 50mcg was sufficient for another six months (although I tried to argue to the contrary).
As you say, I do not have Grave's disease (although another endo gave me that diagnosis when I was experiencing those symptoms when they couldn't read my blood test results).
I was initially diagnosed in Aug 2018 as having hyperthyroidism and IBS by an NHS GP, who referred me to a specialist to look into the matter. I ran two tests in July because the GP struggled to make sense of my results. Since my period was irregular at the time, the PMS symptoms messed up the first test results (or so she said).
July 17, 2018 results
T4: 17.2 (10.0 - 23.0)
TSH: 0.03 (0.27 - 4.20)
Anti-bodies not tested.
July 26, 2018 results
T4: 19.6 (10.0 - 23.0)
TSH: 0.05 (0.27 - 4.20)
Anti-TPO: >1300 (no range given)
Anti-thyroglobulin Abs: 35 (0-60)
I also tested negative for coeliac disease with both tests, but I was incredibly sensitive to gluten and dairy at this point in time (having no issues with this about half a year before).
As you can see, I certainly had higher T4 than what I do now and which is presumably why they thought it was a case of hyperthyroidism. I had pretty much all the symptoms of Grave's disease and my eyes were visibly popping out.
My current endo explained that my TSH was suppressed, but the outstanding question is why I was not treated back in 2018 (see below)?
I met the NHS specialist in October 2018, when my blood tests were also tested (but I only had these sent to me in a poorly formulated letter with no ranges in December). Safe to say the meeting was a complete waste of time, because the oh-so amazing specialist thought it a wonderful idea to prescribe me anti-anxiety pills, which I refused to take and I stormed out of her office.
Oct 2018 results
T4: 16.3
T3: 4.2
TSH: 0.90
Anti-TPO: >1300
Anti-thyroglobulin Abs: 74
They measured my blood pressure at 115/81, which was deemed as "normal." I was exhibiting every single symptom in the book during the appointment, even so, I was deemed "perfectly fine." The b***h of a specialist even said that I'm "young and have my entire life ahead of me" and have "no reason to be stressed." I was 25 at the time and my body was under a lot of stress from the raging hormones.
Needless to say, I can't wait to report this b***h when I am feeling much better.
I also got no support from my job and the idiot boss who refused to give me some time off to find a decent health professional to recover. The biggest irony of this is that she was given time off to seek health care in Poland for Hashimoto's disease.
After this I have about two years' worth of blood test results which demonstrate that everything was gradually turning into Hashimoto's/hypothyroidism but the specialist was even dumber than the first one I met and it didn't even come to her mind to inform me of my results. You can send me a PM if you would like to see them.
In the meantime, I ate plant-based, exercised within the means that I could and tried taking a variety of jobs that are well under my area of competencies. On 50mcg Levo, I find 5 hours/week tiring. But apparently, I'm in "good health."
The incompetence of these health professionals is really sickening.
I am now 28 and had hoped to be progressing in my career and scouting for property to buy, not wasting my money on appointments that don't get me anywhere.
"As you can see, I certainly had higher T4 than what I do now and which is presumably why they thought it was a case of hyperthyroidism".
T4: 19.6 (10.0 - 23.0)
TSH: 0.05 (0.27 - 4.20) July 2018
Anti-TPO: >1300 (no range given)
Anti-thyroglobulin Abs: 35 (0-60)
........No the fT4 was fine , it was the low TSH which made them wonder about hyperthyroidism, but fT4 was not high enough to consider it.... (Graves often has fT4&3 ,3 or 4 times higher than range)
"but the outstanding question is why I was not treated back in 2018 (see below)?"
T4: 16.3
T3: 4.2 TSH: 0.90 Oct 2018
Anti-TPO: >1300
Anti-thyroglobulin Abs: 74
........At this point in the progression of Autoimmune hypothyroidism there is not really any treatment that they can give....( but they could be nicer in how they speak to you!)
Antithyroid drugs would be inappropriate, because thyroid hormones are not even over range, they are right in the middle of the normal range.
Doctor could give something to help tolerate symptoms.
But they can't treat you for Hyperthyroidism when you don't have it, and your own private test of TRab in 2020 confirms that you don't have it.
The only treatment for Autoimmune HypOthyroidism is to replace the thyroid hormones when they eventually become too low , which is what they have done in October by giving you 50mcg Levo. ( but i do think dose needs raising by 25mcg now rather than making you wait till Feb )
"my body was under a lot of stress from the raging hormones.
Needless to say, I can't wait to report this b***h when I am feeling much better."
...... At this blood test there were no raging hormones for the Endo to see, so i don't think reporting her would help you at all.
I totally understand the frustration that this disease brings ,and how it is made so much harder to deal with when your very real symptoms are belittled by doctors.
But i do think that you need to try and let go of some of the frustration and anger you feel towards them. (Yes , i know they are useless, and patronising , we all do ..)
but , your treatment so far has actually been 'textbook', and what you most need now is to encourage current Endo to increase Levo to 75mcg
" my next blood test will be in late February/early March and the endo seems to be pretty convinced that the dose might not have to go up, but I certainly am not convinced by that."
....You may achieve better results if you imagine Endo as a stubborn thick animal that will dig it's heels in if it feels 'pushed' , but is actually very easy to lead with a carrot....
They don't like to think that they 'give in' to pushy patients who self diagnose, and demand prescriptions.... try a different approach.
I know you shouldn't have to , but their Ego's get in the way of their brain's.
p.s By the way , it is very interesting to see your result's, as they show an actual example of the way autoimmune hypothyroidism starts with an initial phase of raised fT4with low TSH , followed by progression to lower fT4 and rising TSH.
Often we just have to assume that this is what happens because many people do not have results from this period, and were only diagnosed once they had become hypo.
With hindsight , i had a period of 'hyper' a couple of years before i was eventually diagnosed 'hypo', and must admit at the time i thought i was going a bit insane and didn't tell anyone.
@glowing_catFrom my experience only, I have found with TEVA levo it actually drains me of any stamina. And I notice you have complained of lack of energy. My doc recently reduced my meds from 100 to 75. And of course TEVA supplies 75 mcg tablets, took me a month to get them to give me 25 and 50, although 50 was still TEVA. At last I’ve got none TEVA levo and within a couple of weeks have felt better, more energetic and able to carry on a bit more. By the way after having had a run in with TEVA before I had asked NOT to be supplied with their products, which till I moved house Boots had gone along with. In fact Boots encouraged me to fill in a yellow sheet (I think that’s what it’s called) for adverse reactions. The best news is tho, I’ve talked the doctor into reverting to 100 mcg! But that’s another story!
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