Hi does anyone know what the highest dose of Thyroxine is you can take? as I am only 40 years old and am now on 200mcg. What happens once you need to go up again but you can't. A doctor I once spoke to said that I might have problems once I get to 60 years old. It is a bit worrying. Is the idea to live a healthy life to make sure your antibodies don't keep going up and you don't get to the stage where you need to increase. Thanks! 🙂
Highest dose of Thyroxine- What happens next? - Thyroid UK
Highest dose of Thyroxine- What happens next?
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Pink-Flamingo1
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shawsAdministrator
Have you ever had your Free T4 and Free T3 tested? If not I'd ask as that would be more informative i.e. you'd know if T4 was converting to sufficient T3. T3 (liothyronine) is the Active Thyroid Hormone needed in our 3 receptor cells. T4 (levothyroxine) is inactive and has to convert to T3.
To help to reduce your antibodies (as it is these that attack your thyroid gland) going gluten-free may help to reduce them.
Always remember to get the blood draw at the earliest, fasting (you can drink water) and allow 24 hours gap between last dose and test and take afterwards.
A number of researchers have shown that T4/T3 also has a beneficial affect if levo alone isn't improving symptoms.
Hi thanks for your reply. Yes my Ft3 is 4, my T4 is 12.6 and my TSH is 3.05. The specialist has just increased my Levothyroxine to 200mcg, and he thinks it should help but he did say that the 2nd step would be T3, if the T4 alone didn't work. I was advised on here that perhaps T3 isn't necessary for me at this stage but yes I have read many people say that T3 really helped them, and I will make a note to find out about this next time I go to the specialist. Thank you, yes I did do the 24 hour gap for my most recent blood test. I only heard about that recently on this site and can understand why this is logical. Gluten free might be hard to do as I love pasta, but perhaps there may be some gluten free brands I can buy, maybe once you get into practice it won't be so hard. Perhaps I could do an experiment for a month or so and see if it makes any difference. Thank you very much for your help and advice. 🙂
Maybe T3 may not be necessary but scientists have found that many benefit with a combination of T4/T3.
I wouldn't give up gluten immediately and wait until your dose is gradually increased and it may not be necessary. Millions seem to do fine on levothyroxine.
The very original thyroid hormone replacement - also called Natural Dessicated Thyroid Hormones contained all of the hormones a healthy gland would, i.e. T4, T3, T2, T1 and calcitonin. No blood tests were required as all the emphasis was on the patients' clinical symptoms- and prescription was NDT since 1892 up until the BTA decided it would no longer be prescribed in the UK - just as they then did for the prescribing of T3 (of course this was because the cost of T3 went sky high).
Going gluten-free doesn't help everyone so it is always trial and error.
The aim is to be symptom-free and we feel we have normal health.
I wish you good luck.
Hi, wow thank you! That's really informative. I understand, so T3 might be beneficial but doctors are reluctant to prescribe it. Yes I kept reading about NDT but didn't really understand what it was, so that is useful. Yes so perhaps I will see how it goes and if I still don't feel right after my current treatment perhaps I can ask about these forms of medication. Yes perhaps then I will wait until my treatment has settled down a bit to try gluten free. Thank you very much! 🙂
It is because of the very inflated cost for T3 that it was withdrawn. The fact that this was without previous notice to those who've been taking it for - maybe years -that it caused immense distress and worry.
Why do people who are supposed to be educated and knowledgeable about hypothyroidism have no clue what the action of T3 does in the body.
Yes it really is terrible. I have heard many stories of people really struggling and for years people haven't received any help or advice. It is so sad that so many people have to go through life like this.
Those professionals who are supposed to know more than us, withdrew NDT a few months ago. In order to do so, they had to make False Statements and one of TUK's Advisors who also was a scientist wrote to them and for three years asked them for a response. They never did response and the scientist died through an accident.
drlowe.com/thyroidscience/C...
How could the very original thyroid hormone be withdrawn, despite it being first given in the 1900s which saved patients from then on up to the present day? Before that we died an awful death.
Hi, I just read the link and that is really interesting. It does make you think doesn't it, what really is going on. I have been on T4 for 10 years now and to be honest ever since I started taking Levothyroxine I haven't felt great. It really is a nightmare for people, and if you aren't lucky to come across a doctor who knows what they are talking about then it can drag on for a long time. I am definitely going to ask about T3 next time I go though. Thanks!
It is worth asking for a trial of some T3. You may strike lucky but more probably be refused. This is because the majority of doctors/endos appear to believe that levo is suitable for everyone. You can always try to source some T3 yourself and then add some to your T4.
The following is by Researchers who advise Thyroiduk.org.uk
When you state numbers from a blood test you must also give the ranges. Ranges are in brackets after the results and enables members to make a comment because labs differ in their machines and so could the ranges.
Ok thanks. My Ft3 is 4 ( range 2.5 to 6.5) my T4 is 12.6 ( 7 to 25)and my TSH is 3.05 ( 0.35-3.5) From what I understand the TSH should ideally be (0.8-1.5) I think the T3 should be higher and I think the T4 should also be higher. I will see how I get on over the next month on the new medication and then will see if my results are better at my next blood test. I didn't take my medication 24 hours beforehand on this test ( taken on 30th Jan) and got very different results from my December test. My doctor said as long as you take the blood test before you take your medication it should be fine. I was wondering if the blood tests were so different in comparison due to the 24 hour gap. Do you think I should follow this procedure again next time I have a blood test.
The TSH is highest early a.m. and drops throughout the day and may mean someone does't get an increase in dose if they have it later in the day.
The 24 hours gap between last dose and the blood test is advisable. There are scientists etc who have done research. It is the same as eating before test, that can also affect results.
TUK also has some researchers who advise on the best way to get suitable results. Your results:-
My Ft3 is 4 ( range 2.5 to 6.5) my T4 is 12.6 ( 7 to 25)and my TSH is 3.05 ( 0.35-3.5)
FT3 should be nearer 6.
FT4 nearer the upper part of the ranges
TSH 1 or lower.
If we had a blood test every hour for 12 hours, we'd have a different results.
(I am also not Medically qualified but had to learn the hard way and am well thanks to TUK.)
Oh great. That's fantastic thanks! Now I know what it should be I can monitor it properly. Yes the blood test gap does make good sense and I have to remember not to have breakfast too. Ok I will check that out on TUK too. Thank you very much! Just one more thing I take my Levothyroxine at night time, so I can have my morning coffee or tea when I wake up. I have read other people that also do this. Do you think this is OK to do?
Yes, you can take levo at night but when having a blood test next a.m. miss this and take after test and night dose as usual. Or once a week!
"Now, a new study suggests that weekly doses appear to work as well. Indian researchers presented the findings at the 2016 annual meeting of the American Association of Clinical Endocrinologists in Orlando. "Once weekly L-thyroxine replacement was well tolerated and there was no indication of acute toxicity or hypothyroidism symptoms compared with daily therapy," according to researchers Satish Wasoori, MD, and Manoj Naik, MD, of Park Hospital in Guragaon, India. The new study echoes some findings from previous research.
U.S. endocrinologists who reviewed the findings say, in general, they still prefer daily dosing.
endocrineweb.com/news/parat...
Hi, Oh that's good news as it does seem better for me at night. I understand, so you should take it right after the test and then again as normal in the night. Thanks! I just read your link. That is an interesting concept. I wonder if it will be introduced. It would definitely be easier that way wouldn't it! Thank you so much for all of your information today and taking the time to reply. I have learnt so much today and I know it will really help me. All the best. 
Once we have travelled a long and weary road it changes our attitude towards the medical profession.
I believe they have forgotten that patients are relying upon them to diagnose and treat to optimum so that symptoms resolve. Unfortunately that doesn't always happen as the doctors are 'following rules' laid down by those who've never had a problem with their thyroid gland and the suffering continues - not for everyone - but for the majority on this forum and others who may not have access to the internet.
It's like me making a sponge cake, by throwing in the ingredients I think would produce a nice one and then being surprised that it turns out to be a flat/hard/tasteless sponge cake. Fit for disposing in bin.
Hi, Yes I completely agree! It is also shown in the number of people who need advice on here. I'm sure if people were told what blood tests, vitamins and medication to take in the beginning a lot of time and money would be saved. How many people miss work because they don't feel well or how many people keep going back to the doctor to get treatment. One doctor I saw at the beginning of my illness told me to go away and that there was nothing wrong with me. He was reluctant to run tests because this would cost money. It is so inefficient and could be easily solved. It really does make you sad, that people are wasting their lives on this, when they can easily be treated and can have a good life with the correct information and expertise. The key it to be persistant, to research as much as you can and to keep going until you feel better. Thanks! 🙂
SeasideSusieRemembering
We need what we need. A former neighbour of mine (female close to pension age) was taking 300mcg Levo.
What happens once you need to go up again but you can't.
What do you mean by "you can't"?
A doctor I once spoke to said that I might have problems once I get to 60 years old.
What problems?
Is the idea to live a healthy life to make sure your antibodies don't keep going up and you don't get to the stage where you need to increase.
So have you had your antibodies tested and they were elevated confirming autoimmune thyroid disease aka Hashimoto's? This isn't mentioned in any of your previous posts.
Hi, thanks for your reply. Ok so I shouldn't worry so much. Sorry I meant once you have reached the highest level of thyroxine possible. The doctor was a bit vague but said I might encounter health problems later on, around 60. I wondered if he meant about taking my thyroid out. Hi yes sorry, I was diagnosed with Hashimoto's disease 6 years ago. My antibodies ( TPO) are currently 315. I saw the doctor last week and he actually did say they have slightly gone down since last time but said with continued treatment ( medication) they might go down a bit more. I guess the best thing to do would be to take the medication, vitamins, maybe go gluten free and cut down on alcohol and try and lead a stress free life if possible. 😁
The aim is to get TSH to 1 or lower with Free T4 and Free T3 in the upper part of the ranges. The latter two are rarely tested. Also vitamins/minerals also have a part to play, so B12, Vit D, iron, ferritin and folate should be optimal.
Hi, ok thanks. I will keep an eye on it. I just had my vitamins tested so will start taking the vitamins and see if it makes a difference to my next blood test. Thank you! 🙂👍
Rather than numbers, it should be upon 'how the patient feels' (i.e. well and symptom-free) rather than a particular dose which could and may vary.
Hi, I understand I will give it a try and see how it goes over the next month. Thank you! 🙂🌸
Pink-Flamingo1
I was diagnosed with Hashimoto's disease 6 years ago. My antibodies ( TPO) are currently 315. I saw the doctor last week and he actually did say they have slightly gone down since last time but said with continued treatment ( medication) they might go down a bit more.
I'm not sure you doctor fully understands Hashi's. Have you looked into it?
Hashi's is where the immune system attacks the thyroid and gradually destroys it.
When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted slightly at these times if necessary, but will need readjusting when hypo symptoms return.
Antibodies fluctuate all the time, their job is to mop up the mess after one of these attacks. So the treatment for autoimmune thyroid disease (Hashi's) is actually for the hypothyroidism, Hashi's itself can't be treated. Once the immune system has completely destroyed the thyroid then the antibodies should no longer be a problem, as their job is to destroy the thyroid then they will probably disappear.
Some members have found that adopting a stict gluten free diet can help, although it's not guaranteed it's worth trying for a few months. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Gluten/thyroid connection: chriskresser.com/the-gluten...
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Here are some articles about Hashi's:
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
Recommended levels ae:
Vit D - 40-60ng/ml (100-150nmol/L)
B12 - Top of range for Total B12, at least over 70 for Active B12
Folate - At least half way through range
Ferritin - Half way through range
Hi, thank for your useful links and information. No I didn't know any of that about Hashimoto's or how the antibodies work. I see! that's why the vitamins are needed. Yes I did actually get my vitamins tested last week and I already posted on here and was given the percentages. My vitamin D was 33ng so is low, My iron is 97ug so is low. My B12 is 368pg so is a bit low. I have been advised to take vitamin D, but am taking cod liver oil so should that be sufficient? The doctor actually said I could buy vitamin D sind K together and take them in drops for a few months. I am taking iron tablets and have bought some B Vitamins. I was also given 400mg magnesium to take until April. I take selenium in a pro biotic form but it just says 55ug per capsule so perhaps I need to increase that to 200mcg. Thanks I will definitely read up on your links. It is important to be informed and know what is happening then you might be able to monitor your health in a better way. Thank you! 🙂
I have been advised to take vitamin D, but am taking cod liver oil so should that be sufficient?
You have to be careful with cod liver oil, it can have high levels of Vit A and that can lead to toxicity as Vit A is fat soluble and is stored, just like Vit D. So it's essential to know the amount of both Vit D and Vit A in your cod liver oil. Does it say the amounts on the label?
Hey thank you!🙂 So in 1 cod liver oil capsule there is 800ug of vitamin A and 5ug of Vitamin D. My current vitamin D Level from my blood test is 33ng/ml at the moment and I think it should be 40 to 60ng/m. Do I need a higher dose of vitamin D than 5ug? Do you think I should also get my vitamin A tested just in case. I have been taking these for a long time. I have to pay for vitamin A, but it might be worth it just to make sure I'm not overdosing. Thanks. 🙂
5ug of Vitamin D = 200iu and that amount wouldn't help a sunburnt flea.
If you take the middle of the recommended level - 50ng/ml - to achieve that level from your current level you are looking at a dose of 3,000iu D3 or 75ug daily.
To achieve that dose of D3 from your cod liver oil would mean taking 15 capsules which would give you 12,000ug Vit A.
The recommended daily intake of Vit A is 700-900ug and the tolerable upper limit is 3,000ug:
ods.od.nih.gov/factsheets/V...
Don 't forget that we also get Vit A from certain foods, eg:
•cheese
•eggs
•oily fish
•fortified low-fat spreads
•milk and yoghurt
•liver and liver products such as liver pate
Also from beta-carotene in certain foods (the body converts beta-carotene to Vit A):
•yellow, red and green (leafy) vegetables, such as spinach, carrots, sweet potatoes and red peppers
•yellow fruit, such as mango, papaya and apricots
So if I were you I wouldn't rely on the cod liver oil for your D3 needs and I'd use a D3 supplement along with it's important cofactors Vit K2-MK7 and magnesium.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
naturalnews.com/046401_magn...
drjockers.com/best-magnesiu...
Retest Vit D after 3 months.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Hi, thank you so much for all of the information. The doctor hasn't really given me much information so I'm sure if I follow your advice I will start to feel better. OK I will go today and get the vitamin D3 and K drops. The doctor has given me Magnesium Citrat 400mg, but the daily recommended dose for women is 310 to 320 mg. Do you think this is OK? He said just to take this for 2 months though. I think I will also get my Vitamin A tested just in case as I eat lots of eggs, fish and yoghurts. Thank you so much for the links! They are great!
The doctor has given me Magnesium Citrat 400mg, but the daily recommended dose for women is 310 to 320 mg. Do you think this is OK? He said just to take this for 2 months though.
Magnesium Citrate is known to have laxative properties therefore if that is the form of magnesium most suited to your needs then the best way to take it is in powder form (eg Natural Calm Original Magnesium Citrate Powder) and then you start low and build up to a dose that is comfortable for you, if it causes diarrhoea then you step it back a bit.
I use magnesium citrate and have used it daily for some time, I need it to help my bowels. I also take magnesium taurate for heart health.
The links I gave you will help in choosing the correct form of magnesium for you.
Hi ok thanks! That would be a bit awkward but thanks for the warning. 😂 I will give it a try and see how I get on with it. If not perhaps I can switch to another type in your link. I see, yes better to start low and adapt if need be. Thank you very much for all of the information. I can now use your web links as a reference, as I carry on with my treatment. I really appreciate the time you have spent helping me. Wishing you all the best! 😊
Looking at your post from 3 days ago, I see you’ve only recently been put up from 150mcg to 200mcg Levo. That’s quite a big jump in one go—and I think it’s going to make a big difference to your thyroid hormone levels.
I don’t think you need to worry—there are lots of people on higher doses (there should probably be more—here, we see all the time people being left on barely enough to sustain a hypothyroid mouse).
Wait and see what happens with this raise in dose. (Although I’d wait 6 weeks before having another blood test, not 4 weeks as you’ve been advised by your doctor. It takes a little longer than a month to build up in the body).
Hi thanks for your advice and reassurance. Yes perhaps I am worrying too much. I guess the important thing is to be on the right dose and to feel well and be able to live a normal life. I also think since October with the higher dose, I am starting to feel better. I have also started taking vitamins too so yes let's wait and see. No one ever knows what might happen in the future so there is no point worrying about it too much. Thank you! 🙂
SlowDragonAdministrator
Post a month ago says dose was increased from 100mcg to 150mcg
Dose is being increased too quickly and retested too soon
Now had another huge increase
Dose should only increase by 25mcg at a time
Blood should be retested 6-8 weeks after each 25mcg dose increase
Absolutely essential to test vitamin D,folate, ferritin and B12 too
Hi thanks! I was originally on 4 days of 150mcg and 3 days of 100mcg and I did that for about a year. Then in October 2019 I went up to 150mcg, was tested twice and last time on Jan 31st, now yes another increase of 50mcg and need to go back in March but would obviously need to get the blood test in advance so yes to me it also seems too soon. I will check tomorrow. Yes have tested vitamins, low on most so I got some from the doctor and just need to buy some vitamin D. Thank you!
Vitamin levels need to be optimal. That frequently means self supplementing beyond the levels GP will prescribe to
I see! Thank you for your advice.
Looking through your previous posts.....
Have you ever had thyroid antibodies tested?
Both TPO and TG Thyroid antibodies
thyroiduk.org.uk/tuk/about_...
If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Needing a high dose of levothyroxine can suggest poor gut function and poor absorption....common with hashimoto’s
Also lactose intolerance often results in needing high dose levothyroxine
Hi yes my TPO ( AAK ) antibodies are 315 it says my Thyreoglobulin AAK is 70IE/ml. I had a test for coeliac disease but it came back OK. I do have reoccurring problems though with a yeast infection on my tongue. A year ago I became really ill and I was advised by an allergy specialist to go on a yeast free diet and take probiotics. I did this for 3 months and thankfully my health recovered. Also since taking probiotics my stomach also feels better as I was getting acid and stomach pain, but even now I have white blotches on my tongue. Do you know anything about this? Do you think this is related to Hashimoto's disease. I think I will try the gluten diet as have heard really good results. I don't know if I should ask for anti fungals or perhaps I need to cut out yeast again. The allergy specialist did say I might have to follow the yeast free diet forever but as time has gone by yeast based foods have crept in. Thank you!
helvellaAdministrator
There really is no maximum dose of levothyroxine.
For one thing, in the USA they make 300 microgram tablets. They wouldn't make them if no-one needed them!
Also, there is a well-documented case of someone who was on over 3000 micrograms a day with no evidence of being over-dosed.
If anyone says that the maximum is 200 micrograms, I suggest they are mis-reading the Summary of Product Characteristics and/or Patient information Leaflet for levothyroxine tablets - at least in the UK. They say:
The final daily dose may be up to 100 to 200 micrograms.
(For one example, see: medicines.org.uk/emc/produc... )
Which, in my book, doesn't mean that more is never needed and must never be prescribed. It is a general observation - though poorly worded.
Hey thanks for the info. Yes perhaps that is where the misunderstanding is, as I thought I was now on the highest dosage, but if in the USA they have higher than that I shouldn't worry so much. Thanks for explaining this! 🙂
Not sure why you will have problems when you reach sixty. I was changed from NDT after over forty years to levo, the dose was increased up to 500mcg and I was over sixty. Have had a heart tremor since birth and an enlarged left ventricle. I can only imagine what health conditions are limiting your thyroud health after sixty.
Having been hypo for over sixty years I was refused an endo referral so had to self source NDT and treat myself. You seem to have a biddable endo so I would go along with him. Good luck
Hi, thanks for your reply. I'm sorry to hear you have had problems in the past. I hope that you are feeling better now and hope Levothyroxine is working better for you too. It is terrible that you had to do it on your own, but I'm glad you have finally got the treatment you need. Yes I shouldn't worry so much. Thank you! Yes after a lot of illness I wrote to this specialist myself and he said he would see me. Hopefully the specialist and advice on here can guide me in the right direction. Thank you for sharing your experience and your advice. All the best. 🙂🌸
Thank you for your reply, I only self sourced after the NHS let me down. I was treated well by NHD for over 40 years. I will continue to take NDT. Levo will never work better for me. I have been hypo since I was a baby, now 68 I know a bit about it.
I hope you do well with the consultant who has agreed to see you without a GP referral. I would never had done that, but you have a had a dreadful health journey. I know no consultant would see me as I only suffered for just over a decade on levo. Other conditions are diabetes, Barrett’s oesophagus, my heart, osteopenia, Reynards, arthritis, varicose viens and a few lingering symptoms. I count my blessings every day when I read of people like you who are so ill. I do hope the T3 doesn’t cause any more damage to your heart and that this consultant is up to dealing with your complex needs. Take care.
Hi, I am really sorry to hear about your ailments. It must be really difficult for you and I hope you are not in too much pain. I am glad you remain positive and that NDT is working for you. Thank you for your kind words. Yes I am hoping things will work out now, and for you too. Wishing you all the best
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