Average dosage

[veryangirl44]

Hi all me again with another question sorry. What is the average dosage if thyroxine people take on its own with out a thyroid please.

[marsaday]

docs use 1.8mcg per kg of body weight as a rough guide. Obviously it can be more or less because so much more influences how thyroid hormones work.

[veryangirl44 in reply to marsaday]

I'm sorry I meant how much on average do people on this Web site take thyroxine wise.

[greygoose in reply to veryangirl44]

I'm not sure anyone can answer that. I don't think the average has ever been calculated. Or do you just want people to tell you how much they take? I don't take any, I take T3 only. But, when I did take it, I took up to 200 mcg before I realised it was never going to make me well.

[Hidden]

Everybody takes a different amount according to their needs. I take NDT as Levo did not work for me. I think it is weight as well.

[BadHare]

I self-medicate with NDT & T3, & take a higher dose than three people I know, two with no thyroid, one with no thyroid function after RAI. All three still have hypo symptoms, especially fatigue. My friend's husband is a big 6'5" ex rugby player, & is only on 140mcg. He was told to take his levo with yoghurt, & not told about other things that impact on absorption. My mother is only on 70mcg. I don't think there's an average dose that works for anyone, due to health, lifestyle, genetics, etc, but it seems to me that their endos have all of them undermedicated.

ps Apologies for the dreadful spellies, my phone has presumptive text issues!

[veryangirl44 in reply to BadHare]

This is why I get so frustrated with the ranges of how we can all be treated within the ranges

[BadHare in reply to veryangirl44]

It seems almost everyone on here is frustrated, but considerable less so, thanks to the advice from the wonderful admins & other knowledgeable people on here.

Where you are in the range is unique to you, your condition, & every other factor that's impacted on your body from conception. Any comparisons will only be vague.

[helvella Administrator]

If this is for general interest - fine. But be very wary of gauging your dose according to others.

I reckon for someone who cannot make any thyroid hormone at all, you are probably looking at a minimum of 1.6 micrograms per kilo of bodyweight.

Some require not just a little more, but massively more. A lot of this seems to depend on ability to absorb the levothyroxine from the gut. However, we vary and some people simply seem to need more. Perhaps they are particularly effective at getting rid of any excess? Or they take their levothyroxine with food?

[veryangirl44]

My question is more put of frustration of having a thyroid an still needing a high dosage of thyroxine as I'm not working very well on the reduced 150 and I have been on 200 for over twenty years till now. Isuppose I was trying to get some kind of an idea if mine was working at all now after all these years

[helvella Administrator in reply to veryangirl44]

If anyone is suggesting that a (slightly) high dose needs looking at, I won't disagree. But it needs to be investigated properly - for example, low iron can affect the ability of the body to handle thyroid hormone. Or if you have low selenium. Or a gut disorder. (Many reasons for needing a high-ish dose are not in themselves thyroid issues.)

[veryangirl44 in reply to helvella]

Does thyroid UK do any meetings around locally icon attention please

[helvella Administrator in reply to veryangirl44]

Could have a look here:

thyroiduk.org.uk/tuk/suppor...

And/or post a new question asking for your area of the country.

[veryangirl44 in reply to helvella]

Thank you

[marsaday]

If you don't do well on more and more T4 then this indicates a problem with the body using that hormone. Blood tests can help here as a guide to show what is happening.

eg. Bloke takes 150 T4 and Ft4 is at 20. He is still not well.

Takes more and more and gets to 200. His FT4 is now 26. So he has much more hormone in his system but is still not well. We tend not to get FT3 figures, but this would help so much more than T4 only.

If Ft3 was lowish in the range then this shows the person has a conversion issue and taking more T4 is just going to be a waste of time. If the FT3 is high in range or over then the thyroid is not being used by the body. He doesn't have any hyper symptoms because the thyroid is just floating around the blood and is not being sucked up into the cells.

This is so common. So why is he not absorbing the T3 ? Often we don't have enough cortisol to accompany the T3 into the cells, or we can have too much cortisol. The body can go into protective mode and make RT3 instead of T3 and so even though we have high FT3 numbers, the T3 is actually the non usable type. This is done to protect the body from excess energy production. The body feels it is not in the position to use this excess energy. Why ? This is called metabolic dysfunction and is so much more than just taking thyroid hormones.

It really is an essay to help explain what is happening and how you can go about taking steps to improve things. It takes time and is not straight forward.

Having said all that, have you tried more T4. some people are needing big amounts, say 300-500mcg to feel good. Have you actually tried bigger doses ? I suspect these people have an issue in the stomach and intestine and the T4 is not getting past the stomach and so only a little gets into the blood. Could this be your issue ?

If you take more and more T4 and start to feel tight in the chest and BP goes up then this indicates it isn't working.

Sorry no straight forward answers, but hope the info gives you some leads.

[veryangirl44 in reply to marsaday]

Thank you for taking the time to reply. for the last four weeks my belly and chest has felt tight on the 150 this is not the case on the higher dosage of 200 mcg.

I'm constantly feeling full and my stomach hurts.

I do feel I was better off on the higher dosage.

In the last five years I have put on three and a half stone. I think more so through a bit of depression and over eating so that has not helped I'm sure.

I'm thinking of trying ndt.

I have never tried a really high dosage of thyroxine I have been so scared by what drs say till now but now I'm ready to try anything.

I do not know the cause of my thyroid problem it was enough to get a diagnosis I was told back then I was to young to have a thyroid problem as I was about twenty.

Twenty four years on I realise more and more people are diagnosed and younger.

Is there a way to find out the cause of my thyroid problem please?

[marsaday in reply to veryangirl44]

What are your thyroid blood test results and on what dose of T4 ?

Have you had the thyroid antibodies tested ? If you have these antibodies you have hashimotoes and this makes treatment a little more complex as you need to look at diet a bit more.

IF you were better on 200 T4 it sounds like you are now under medicated on 150. You just need to tell these docs to trot your symptoms and not the blood tests.

If you self medicate and get back to 200, see how you go for another 4 weeks. If you still feel off'ish then i would first look into using a little T3. Moving over to NTH is a bigger step, more expensive and harder to get on the NHS. Getting T3 on the net is simple and 100 tablets costs about £22 on a well know supplier.

The bloated stomach is a classic hypoT symptom for me. I will get this if i don't take enough T4.

It is important you start to monitor your blood pressure and temperature. These are good indicators to help you work out if you are doing ok. I won't go into specifics now, but if you want more info on this just ask.

[veryangirl44 in reply to marsaday]

My free t3 normal at 5.2prol/L range u 3.1-6.8

My tsh is 0.019 miu/L range 0.27-4.2 on 200 mcg

My t4 is 27.1pmol/L range u 12.0-22.0 on 200 mcg

Tsh was 0.1 range 0.27-4.2 on 175/200 alternate days

T4 was 23.1 range 12.0-22.0 on 175/200 alternate days

Now My tsh is. 55 ranges (.27:4.2) on 150 mcg

T4 20 range (12.0-22.0) 150 mcg

Now Dr wants to reduce me to 100 mcg for next six weeks till blood test.

I have been on thyroid meds for over twenty years nearly all on 200 mcg where I feel better. Now my Reynolds has come back I'm constipated and fed up but just again arming myself with knowledge. I have never been told why my thyroid does not work.

[marsaday in reply to veryangirl44]

Thyroids don't work that well in some people. It can happen at birth, or develop when still a young person. More commonly it starts to lower output as we age naturally.

I can't say why this happens, but it does. You were hit early on in your life, but it seems you have been ok on 200T4. Time to go back up. You need to be more assertive when dealing with the docs. You just need to make it clear you now feel much worse on 150 compared to 200. The doctor MUST listen to the patients SYMPTOMS. This is the key to proper treatment.

You need to communicate as best you can what is now happening that you are reducing. I have just had the same thing happen to me. They wanted me to drop down to 125 from 150. I spoke on the phone to a general GP and explained i feel worse if i lower down and NOT to focus on the TSH. My FT4 was 19 as well, so well within the range. He was happy so long as i came in that day for a check up (heart rate was his main indicator). Well my HR is mega low so not a worry in the world. He could see and satisfy himself i was no where near hyper thyroid with a TSH of 0.16

You have to understand these GP's no very little about thyroid health. It is not seen as a difficult condition to treat. All they understand is the TSH. If it is low they get warning lights going off. IT is an issue with education and sadly the GP's are not catching up with forum info.

So monitor your heart rate and temps. Get a blood pressure monitor and take your reading at set times of the day. I take mine at bedtime while lying down. This gives me a good idea of what the body is doing. I don't do it every day. Same for temp, but do it in the morning when you wake up. Temp should be higher than 36.4C (36.6C according to the famous thyroid doc Broda barnes).

Your results on 200 T4 are not that bad. They don't fit in the standard box, but FT3 is still in range. Ft 4 is over, but some people find they need a high FT4 to feel good and a low TSH.

I would think a little T3 added to your T4 at 200 would make you feel even better. It's a case of trying the lowest amount first of all and see how you feel. Tablets are in 25's on the net, so 1/8th is about 3mcg. Believe it or not this would really make some difference. Over time you may want more, but you need to see how a little works first.

BUT need to get back up on the T4 first.

[veryangirl44 in reply to marsaday]

Thank you again. Your advice is so valuable to me. I'm taking on board everything you say and all advice on here. Can I just ask do you know my tsh is not changing much please

[marsaday in reply to veryangirl44]

Your tsh was 0.01, then 0.1, then 0.5 I think.

So it is going up. This is as it should be because you are reducing down the t4 and the body can sense this because your blood level of t4 is going down. All is working ok.

[veryangirl44 in reply to marsaday]

Nice to know something is ha ha thank you

[Stourie]

How did you feel on 200mcg. If you were good then I would go back to taking that. I haven't read back to your other posts so don't know if it was you or your doctor who reduced your dose. I really think that after 20 years you need your 200 of levo. The thyroid rarely starts working again.

Jo xx

[veryangirl44 in reply to Stourie]

I had this nine years ago at my other drs when I first went there they did all the reducing tablets then realised I was better off on 200 and left me alone. It's since moving again and going to the Dr with constant all over pain the bloods come back only my thyroid looking over medicated with the lab suggesting I have a t3 test but that come back in the normal range at 5.2 so it's so frustrating. I am waiting on new blood results back now.

I'm going to go back to my follow up appointment more assertive but this is how I come around just wondering what would be the average meds someone was on with no thyroid at all.

[Stourie in reply to veryangirl44]

It really is just a case of everybody is different and their bodies utilise all things differently so there really isn't an answer to that. I hope you get your levo up to 200 again, soon.

Jo xx

[veryangirl44]

Thank you x