Hello I had full thyriod removed what amount ... - Thyroid UK
Hello I had full thyriod removed what amount of thyroxine should I be taking?
What dose have you been given?
If you have no Thyroid you should be on a full replacement hormone dose, but they may do this gradually. If you had it removed because of cancer then they aim to suppress it (e.g blood TSH as low as possible, but FT4 & FT3 tests should be done too).
Many have a combo of T4 (Thyroxine - storage hormone) and T3 (active hormone). Sometimes they go by your weight. I can't really say as I only had a partialT and no medication (yet!) but notice many folk are on at least 100mcg (a 7 stone person? just to give a very very rough idea). Everyone's different but Basically enough to ease your symptoms of Hypo. (but they probably will go by blood tests). Best wishes Jane 
more info on the main TUK site here...
Thanks I,m on 125 reduced from 150 to try and control urgent bowel action but has nt had any effect just feeling tired I never had constipation probs
I started on 100mcg, was increased to 125mcg and am now on 112.5mcg. I felt ok on all of them, but best on the 112.5mcg. I'm 5 ft 4 and slightly overweight if that's any help.
We are all individual, so it is difficult to say what is the right dose. It is the dose which restores you to normal - I don't mean a normal blood test figure, I mean a normal healthy individual who can lead a normal life and feels as well as before the thyroid problems.
This can mean a TSH of anything between 0.01 - as mine is now - up to 2.9 or so. That's why aiming for a TSH level is nonsense.
This means that you slowly increase the Levothyroxine until you have a temperature which reaches close to 37 degrees and a blood pressure which is close to normal and not really low all the time.
One thing is certain, if you have no thyroid, it is going to be a strong possibility that you need more than just Levothyroxine. You may need some T3 as well. A person like that will find that no matter how much the Levo is increased, he or she does NOT feel well, temperature is still low, and sometimes the pulse will suddenly start racing. Pain can be a constant drain and energy levels still low. this is an indication of a need for T3, and in time on T4 (Levo) only, there will be a degree of adrenal exhaustion.
This is the precise situation in which I found myself after many years of levo-only hormone replacement. I found that although I was on what seemed to be an adequate T4 dosage, I still felt ill and tired plus quite a lot of ill-effects such as high cholesterol and asthma. Eventually I had a private blood test which showed high-normal T4, very low TSH (leading my GP to conclude I was overdosed), yet my Free T3 was just blow the normal range! I was actually underdosed because I could not convert the T4 to T3 to make it active. The higher the dose of Levo, the worse things got. I would never have found this out without testing the T3.
If you are still not right on that dose of Levo, you really need to get the T3 tested. If you can't get it done by your GP, then you can get it done privately. The main TUK Website has a list of private companies who do this, I find the Blue Horizon home fingerprick test very convenient - I do the Thyroid Intermediate - TSH, T4 and T3 every 6 months just to make sure, although I know that I am doing well by how I feel. If my GP tells me I'm overdosed I just show him my test and reject his suggestion of reducing my meds.
Sorry this is such a long answer, but it seems to me if you are asking that question, you don't really feel right!
This is the blood testing info:
thyroiduk.org.uk/tuk/testin...
Take care, now.
Marie xx
Thank you so much for explaining ,as you may have deducted ,I am one of many, who have just ,woken up to the I depth thyroid problems and are not alone ,will be going to GP for test results next wk armed with good advise
that is so interesting because I had my throid gland removed almost 13 years ago because of v. early papilliary cancer found quite accidentally - begnign lump on the thyroid which kept coming and going and which I insisted was taken out in the end. Shock horror! however I started on 150 lexothyroxine and the dose has changed between 100 and 125 depending. Recently I was changed to alternate 100 and 125 but what has happened my cholestrol has gone to 9.7 and ofcourse they want to put me on statins - noooooo! They said I am being overdosed to supress something!! I feel ok reasonable energy but want to get the cholestrol down but I have to be careful of my bones because I am told due to being on too high thyroxine I lost bone in my hips and had to have a hip replacement. Really its just a minefield what you read and I dont think I have had T3 tested ever!!!! I have put on 14 lbs in 2 years the dosage has been messed about with although I am a swimmer and swim quite hard 3 times a week it is hard to remove that weight. However I am cutting down on the carbs (bad time to do it) and trying only to have wine at weekends or social occasions (2) only. Sometimes I feel (thick)!! around the neck area at the sides although I do have a slim neck - just feels not quite right. I am very well really just having a moan because the correct dosage/treatment/supplements/ etc is so difficult to get right! Physicians dont give all the info - nobody ever mentioned losing calcium or having a side effect of high cholestrol if the dosage is incorrect. Thanks for all advice given - its wonderful.
I agree that you are probably not going to get along on just synthetic T4. I didn't get on with T4/T3 either. I'm doing better on natural finally but it's still a daily juggling act ....
I do not agree that a fulll replacement dose is three grains, that's a mere piddling 114 T4 and 27T3 which might suit a small child! The average natuaral dose is 3 - 5 grains of natural thyroid (Armour is not recommended since it's reformulation in 2009) but many people need more than that, so I know people taking 8, 9 and 12 grains (they are not the average though, but we all need as much as we need).
Managing being thyroidless is much more complicated than being just hypO - it's a balancing act of electrolytes, iron, cortisol etc and understanding that things in our bodies don't always go to plan / go awry since a major endocrine gland got removed so we need to be careful what other supplements / hormones we take. I'm also part of the yahoo! thyroidless group and they've really helped me.
Rebecca
x
The average natuaral dose is 3 - 5 grains of natural thyroid
Could you back this statement up with some reference/s that prove this please, such as prescription statistics or something?
Many people DO NOT need even as much as 3 grains of desiccated thyroid. I can quote my own experience as just one example. I was extremely ill on two grains, but assumed I was still under-dosed. Increasing made me even worse. It wasn't until I dropped down under two grains that I began to feel as if I might be getting somewhere. We have had lots of members here who have fallen in to this same trap.
(Armour is not recommended since it's reformulation in 2009)
We also have plenty of members who are doing just fine on Armour thyroid right now. It is probably the most commonly prescribed desiccated thyroid preparation here in the UK.
Please always remember this golden rule… What works for one does not necessarily work for another. We are all different. Sometimes less is better.
I was talking about thyroidectomy patients and most cannot get above three grains due to low iron, low cortisol or electrolyte imbalances. I'm a member of a thyroidless forum and that's the experience of their thousands of members. I'm assuming you still have your thyroid?
My thyroid does exist in theory. But autoimmune disease has rendered it useless. It does not produce thyroid hormones.
Also many people find Armour is no better than synthetic since it was reformulated.
Here is a medical article from 1949, these women were going into myxodema madness - which we can therefore assume is total thyroid failure. Please note how many grains they are on: ncbi.nlm.nih.gov/pmc/articl...
A 'full replacement' dose for an adult without a thyroid is usually more than 114 T4 and 27 T3. Like I said, being thyroidless is different to being hypO.
Also see here: stopthethyroidmadness.com/m...
Rebecca
I'm sorry, but I disagree. Being thyroid-less is no different to someone whose thyroid still 'theoretically' exists, but does not produce any thyroid hormones at all. It is the existence of thyroid hormones that matters, not the existence of a thyroid gland itself.
Granted, some people do simply have an 'under active' thyroid. And these people don't need full replacement dose because their own thyroid still produces some hormones. But these people are actually in the minority compared to those whose thyroids have been destroyed by autoimmune disease.
Quoting figures from a 1949 paper is not relevant today for many reasons. For example, diets have changed dramatically, which can affect absorption. The formulation of desiccated thyroid has been standardised, and how to manage dosing regimes is much better understood.
Also, interesting as the stop-the-thyroid-madness site may be, it does not change the fact that not everyone needs high doses of thyroid medication.
We all need to be careful about giving out potentially harmful advise, both for the sake of the wellbeing of patients, and in order to minimise the disregard and disrespect that many medics have for our plight.
LIke I said you still have a thyroid in your body. It's not the same and we wont agree on that. I also don't agree about dosages. C'est la vie.
Oh how clueless , I have been in not knowing, there, is more than levothyroxine, thanks for advise x
No, don't blame yourself! It is not you that is clueless but the medics that are supposed to be treating you.
Ive no thyroid and I'm on 50mcgs and have been for 3.5 yrs! Last tsh was. 3.6 and yes l feel crap. And been told tsh normal no action required!
deni, my understanding of total replacement doses is limited as it doesn't apply to me but I know that there is a chart which gives possible doses with regard to a persons weight. I'm sure full replacement is more than 50mcgs.
Did you have your last blood test early morning and before taking your daily dose? If you had your bloods done after your dose of levo or in the afternoon, this can change the result.
If you're still having symptoms, what is your GP doing? Are these being investigated further?
I hope you go back to the GP for some support as we all know that 'normal' may not be normal for you!
Good luck
Liza
That is crazy..I'm on 275 of t4 and 20 of t3 following total thyroid removal and RAI treatment 11 years ago.
I don't have a thyroid, I'm on 100 Levo, but really want more.!!!! But get told that awful saying.... You are within range!!!!! I hate those words
orangelady, my understanding of total replacement doses is limited as it doesn't apply to me but I know that there is a chart which gives possible doses with regard to a persons weight. I'm sure full replacement for an adult is more than 100mcgs.
Did you have your last blood test early morning and before taking your daily dose? If you had your bloods done after your dose of levo or in the afternoon, this can change the result.
If you're still having symptoms, what is your GP doing? Are these being investigated further?
I hope you go back to the GP for some support as we all know that whatever level you're at 'within range' may not be right for you!
Good luck
Liza
Thanks Liza I am going to question this x
Hi I had blood dine firs thing. Before meds doc won't do anything I'm within range!!! Having lots of palpitations etc tierdness getting worse x
Are you not under a consultant who did your TT? If so speak to them rather than GP. I'm under an endo following my cancer 11 years ago, GP always try to bring my meds down but endo is happy and so am I.
Did you take your levo before your blood test? I seen it advised that it's better to take your T4 after your blood test...
I'm so sorry to hear you feel so unwell.
What is your GP doing to investigate your symptoms? Saying 'it's not your thyroid - go away' isn't good enough. If it's not your thyroid - what is the GP doing to help you?
A TSH level of 3.6 may not be normal for you - why won't your GP allow you to trial a little more since you're still having symptoms?
xxx
No endo stopped seeing me once thyroid was removed in 2007 l don't understand why I only need 50mcgs ????? How is this possible? X
Your GP probably did his/her 15 minute thyroid module back when the old king died. The recommended starter/replacement dose in modern medicine is 100mcg unless a higher suppressive dose is required post cancer.
Allowing/forcing a hypothyroid patient to be under medicated can cause as much cardiac damage as overmedicating can. If your GP won't consider upping your Levo to bring down your TSH to 1.0-2.0 which will probably be much more comfortable for you, I think you should seek a 2nd opinion and probably a new GP.
Oncologist started me on 200mcg Levo. My weight was 49kg and BMI 16. It made me feel very ill indeed. But 100mcg Levo also makes me ill 
Thanks clutter it's like there programmed to just diss you off!
NDT - Should I take it and what are the benefits?
HRT and Thyroxine. Should you take both these drugs?
T3 what amount per day do you take 
Hi am a newbie I had total removal of thyroid gland 21 yrs ago an take 250mg of levo this was down
