I've struggled with different brands of levothyroxine as they give me terrible side effects (Teva is the worst). Wockhardt seems to be the only one I can tolerate, however I have not been feeling myself for a couple of months, and wondering if I now can't tolerate this one either. I feel weird heartbeats and pressure on my chest, twitches in leg muscles, every now and then like I can't breathe (although it feels more gastric if that makes sense). Oh and my hair is falling out again. So I'm wondering if now I'm 46, my hormones are changing and that affects what I can tolerate? Or whether I need to up my meds or whether it's low vitamins. I am going to request a blood test for all these today, plus menopause. I bought Metavive on someone's recommendation, as I do prefer the idea of taking something natural, but haven't been brave enough to take it properly yet. Has anyone else switched over or do you think it's worth trying to get the GP to prescribe me NDT due to side effects of levo? Any advice appreciated, thanks!
Written by
Joybells123
To view profiles and participate in discussions please or .
That's a good point, no I'm not sure. I have requested a full blood test from my GP, fingers crossed! I haven't been tested for ages, so will post again when I get these results. Many thanks for answering
They only seemed to refuse the antibodies test...but will see what the nurse says when I go for the test next Thurs. If not, I'll have to do a home test (can't afford to but health is more important). Thank you
i very much doubt you will be prescribed NDT on the NHS :
If you go into openprescribing.net and then go into analyse - and use Armour as the drug you are checking - you can see by surgery and CCG/ICB area how many prescriptions are being honoured in your catchment area.
We are reading of people who have had NDT on the NHS for decades being encouraged to try T4 monotherapy with a possibility of a prescription for T3 if ' deemed ' necessary by a NHS endocrinologist.
Once with a TSH Free T3 and Free T4 reading and ranges plus inflammation, antibodies and ferritin, folate, B12 and vitamin D we can help explain the results and offer considered opinion on your next best step back to better health.
Remember it's an early morning blood test for thyroid, fast over night, just taking in water and do not take your daily T4 until after the blood draw - so leaving around a 24 hour window from last dose of Levothyroxine and stop any supplements a week before hand so your results show what your body is holding rather than what you have just ingested.
That's interesting. I'm in the Southeast so there are more prescriptions here than any other region, but still not many. I've requested a blood test for all the factors you mentioned, will let you know what comes back. Many thanks!
Are your surgery writing any prescriptions for NDT ?
The excuse given to me by my surgery was that existing patients on NDT were the older patients who moved into Care Homes in my catchment area and already on NDT:
It seemed to me in 2017/18 when I tried to get an alternative to T4 monotherapy - and very unwell - that no new patients were to be prescribed NDT nor T3 in my catchment area as we were the county at the top of the league table for prescribing these much more expensive treatment options. - the hospital followed the same line and I started self medicating in 2018 and am much improved.
Oh that's interesting. Very frustrating that they try and fob us off with the cheaper stuff, but it's a false economy really as if we don't feel well, we will be more of a drain on the NHS surely? So what do you take, if you don't mind me asking? I bought Metavive after someone on a facebook thyroid support group recommended it, and I worked out approx half one of these would equal what I take of levo at the moment, but haven't tried it yet. I will ask my GP surgery whether they do prescribe NDT (I expect them to say no, but you never know)
Yes - but more ill health equals more prescriptions, and more profit on Big Pharma's bottom line !
Well look up your surgery first so you know if they do prescribe - but unless a single man practise we aren't able to actually see which doctor is writing the prescriptions.
Whichever thyroid hormone replacement you choose the first step is to get your ferritin folate, B12 and vitamin D results and ranges and then we can advise if these need supplementing as no thyroid hormone works well until your core strength vitamins and minerals are up and maintained at optimal and we also need to see a Free T3 and Free T4 reading and range.
I'm sorry - I thought you said you were getting a blood test ?
If your doctor can't oblige there are private companies listed on the Thyroid UK website - thyroiduk.org - it is a venous blood draw and around 10 blood tests and sometimes referred to as an Advanced Thyroid blood test.
Once with the results and ranges start a new post with the results and ranges and you will be talked through what it all means and given considered opinion as to your next step back to better health.
Arrange n early morning appointment -ideally at the beginning of the week - and fast overnight - just taking in water and take your T4 after the blood draw so having left around a 24 hour window from your last dose.
Also stop all supplements the week before the blood tests so we measure what your body is holding rather than what you have just ingested.
On the Thyroid UK website - who are the charity who support this forum - thyroiduk.org - there is a page detailing Private Companies who run blood tests :
I don't know if Medichecks - the company I use from this page ' s t r e t c h' to Northern Ireland - and suggest you take a look -
there might even be a separate listing on the page for forum members in NI -
I'm sorry I can't remember - if nothing there maybe try searching for private blood testing companies where you are.
Oh - I just looked and see that Medichecks has a presence in Northern Ireland :
But I have no information about the open prescribing -
maybe send them an email -
I contacted them a few years back as I wanted to know if the analyse went further and gave doctor's name but told they can't drill down further than the surgery.
I have now requested a new blood test so will see what comes back. Yes I think I will see what it says and then perhaps discuss with my GP (although we never get to see the same doctor and I think they will look at me like I'm mad, but you never know, sometimes you come across one who understands - unfortunately the last GP who did has now retired! ). Many thanks
Sounds much more like been left on inadequate dose levothyroxine
When on inadequate dose levothyroxine low vitamin levels are inevitable result
Low iron/ferritin results in hair loss
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
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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
List of private testing options and money off codes
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
I bought Metavive on someone's recommendation, as I do prefer the idea of taking something natural, but haven't been brave enough to take it properly yet
if you have taken any Metavive at all it will have affected your test results
Thanks for the info. I took a tiny bit a couple of weeks ago, but nothing since. I now have a blood test booked for next Thursday first thing. They agreed on all the things I asked to be tested apart from antibodies as I already have an agreed condition apparently. I'm only on 25mg levo, and have been for years. I have a goitre with nodules and am underactive so I guess that would mean Hashimotos, which makes sense as various things seem to make me flare up, then I feel better for a while then worse again!
I'm defo not extremely petite!! ok will do thanks. I am just taking Well Woman vitamin supplements and vit d/k2 spray (used to use liquid sunshine but can't seem to get hold of it anymore). Sometimes I take a glug of my daughter's liquid iron that she is prescribed. That's it really. What do you take?
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually 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.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Tell them you have symptoms still or coming back. Tell them that you want to try an increase in dose to bring your TSH down towards the lower end of the reference range and not just stop anywhere in range.
you need to get hold of all your previous test results
See exactly what has been tested and what results and ranges are
On levothyroxine we should ALWAYS have TSH below 2
Most important results are always Ft3 followed by Ft4
Many (most?) people on levothyroxine will have TSH below 1 when adequately treated
Many will have TSH below range
Always test each morning, ideally just before 9am, only drink water between waking and test and most importantly last dose levothyroxine 24 hours before test
Levothyroxine doesn’t “top up” failing thyroid, it replaces it
So almost every person on levothyroxine will eventually be on full replacement dose
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Hi SlowDragon. I now have my blood test results. If you get a minute, would you be able to have a quick glance over them and see if you spot anything? My initial thoughts are that my TSH could be a bit better, Vit D seems ok, But iron/ferritin/B12/folate could be better. Many thanks for your advice.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating 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.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Oh wow, thank you so much for all the info, I will read through it all later. Explains why my hair is falling out I guess. So they haven't actually tested my iron level in the above, is that correct (just checking as there are various things listed which I don't know what they are)? I will let my GP know and see what they can do to help. I had started taking some of my daughter's ferrous sulphate and it stopped the heart palpitations and I have started feeling a bit better, so I did wonder if it was to do with my iron. Thank goodness for this forum and for your amazing advice....the GP hasn't even asked to see me to discuss my results!
By far most likely reason for being anaemic is being left on completely inadequate dose levothyroxine
Levothyroxine doesn’t top up failing thyroid, it replaces it …..
If not on high enough dose levothyroxine, then remain hypothyroid and when hypothyroid we develop low stomach acid, this results in poor nutrient absorption and low vitamin levels as direct result
How much levothyroxine are you taking…..still only on 25mcg ?
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)
Is this how you did your test?
FT4: 11 pmol/l (Range 7.7 - 20.6)
Ft4 is only 25.58% through range
Most people when adequately treated on high enough dose levothyroxine will have Ft4 at least 70% through range
Request 25mcg increase in levothyroxine
Retest thyroid levels in another 2-3 months
Likely to need several further increases in dose over coming months
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I am taking a vitamin D and k2 spray, which is 3000IU per day. Thank you, I will read all the articles about B12 you have posted. Very helpful. I will ask for an increase of 25mcg of levo. I really appreciate you taking the time to help me out, I haven't felt myself for ages....not much energy, high anxiety/lack of confidence, low mood and I thought it was purely thyroid-related but realise it is more complex than that.
When I first started on levo I had been suffering from symptoms for years but because my TSH was borderline, the GP wouldn't give me any medication, despite virtually all my family having diagnosed thyroid problems and me having a goitre and nodules. I fought for years, saw an endo etc. In the end I got hold of some myself and took it and felt better. Then moved house, saw a new village GP and when I explained, he prescribed it for me from then on (I came out of the surgery and burst into tears after years of trying to get help). Now the village GP has merged with a bigger town GP, that lovely doctor retired, and there's no follow up care for anything. We never see the same GP twice, lucky to get an appointment at all to be honest!
It's all a bit depressing really, as I can't afford to go private or get private blood tests done at the moment. So I am going to ask the GP for an increase to 50mcg levo and also for a blood test for Serum Iron and TIBC (Total Iron Binding Capacity) and explain that my ferritin is low and I have symptoms and this needs to be addressed. In the meantime, do you think I should stop taking my daughter's ferrous sulphate, even though it is improving my symptoms slightly? I will order the B12 and B complex vitamins you recommended. Thanks once again.
Morning, thank you SlowDragon for your support and advice, I would feel like I was going crazy otherwise. So the GP just rang (a different one - again), he started talking about fraud and why am I on levo when I didn't every actually get a diagnosis and I should be paying for my prescriptions (I said I will pay, I will work full time, I'm not taking it as a scam, I'm taking it to feel better). He will not consider increasing my dose, even though I told him I feel well when my TSH is around 1. I explained all about my family history of thyroid problems and my goitre/nodules and that my TSH went up to just under the threshold. I also tried to say that in Europe the top of the range is much lower, and he basically said he has enough trouble keeping up with what's happening here. So he didn't listen and I may as well have just got up and banged my head against the wall. He said he will refer me back to the endocrinologist....which will probably take about a year to come through as we live just outside London, and also now I'm scared they might take away my levo. He also wouldn't listen about my iron/ferritin levels and refused to prescribe me anything as I'm "in range". I explained that previously when my vitamin d was "in range" but at the bottom I felt terrible until I supplemented it. He said I'm welcome to go and buy supplements but he wouldn't recommend it. So I asked what about my symptoms then? He said he will get me an apt with the dermatologist (because of hair falling out), I said it's not just that though, it's restless legs, muscle cramps, digestive problems, there's something going on which isn't quite right which is causing all these things, but he wouldn't listen. So I guess I will buy supplements and get a private test in a couple of months to see what my levels are then. Hopefully if I can improve my ferritin levels, TSH might improve. Honestly I felt like I was thrown back to those years of trying to fight to get my thyroid issues taken seriously in the first place, it's so upsetting.
Yes, I am one that had awful symptoms on levothyroxine - with both absolutely abysmal labs on it & a 'successful' one.
So I believe after a long go at it, I was at my proper dosage. That was not the issue for me.
And yes I do much better on NDT, for whatever reason.
But like SlowDragon and others have mentioned there is no need to make a conclusion for yourself until you are given your proper dosage. And that will take quite a while because we should never go up more than 25 mcg every six to eight weeks. Do not let any doctor tell you otherwise. I was taken from 112.5 to 200 in one go, and I believe my body took a real hit from that choice.
-------
Also, if you ever try NDT do not automatically think it is not for you if you feel 'off' or 'wired' at first. The change can take a bit, especially if you have never had t3 via a pill before.
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.
ok will do thanks. I am just taking Well Woman vitamin supplements and vit d/k2 spray (used to use liquid sunshine but can't seem to get hold of it anymore). Sometimes I take a glug of my daughter's liquid iron that she is prescribed. That's it really. What do you take?
Thybon T3 side effects
Carbimazole side effects
Any alternative to 50mcg Levo
Levo doses and side effects 
