ive been on thyroxin for 31 years due to a medical blunder, dose has been 375 a day but now up to 400, body feels like its falling apart

[charka]

what long term side effects please, as getting worried

[PinkNinja]

Sorry you are feeling so terrible.

Do you have any recent blood test results?

This does look like quite a high dose but that is what some people need. Do you have any of your own thyroid left and is it working at all? I'm guessing the answer to both parts is "no" if you are on this dose. In which case getting a free T3 test would be helpful to you (and perhaps a reverse T3 test too). Perhaps you need a little T3 to replace some of the thyroxine. Sometimes the addition of only a small dose of T3 can make a huge difference.

There aren't necessarily any long-term side-effects of thyroxine but, if your body isn't using it very well and you therefore are effectively hypo, you could suffer the effects of being effectively undertreated.

You may also want to look at getting the following tests as deficiencies in these can affect how your body can use thyroxine:

Serum iron

Ferritin (stored iron needs to be above 90ish)

Vitamin B12 (above 500)

Folate (around 12 is good)

Vitamin D

Cortisol (preferably the 24hr kind)

Can you get a referral to an endo? If you can get a more detailed thyroid test (including free T3 at the very least) you may be able to get to the bottom of why you are feeling so terrible.

You may want to have a look around the main Thyroid UK website for more information. Click on this link thyroiduk.org.uk/tuk/index....

I'm sorry I couldn't be more help.

Carolyn x

[charka in reply to PinkNinja]

hi i have no gland at all, i have a full blood test every 3 months, but doctor says all is ok ? ive not heard of t3 or armour

[PinkNinja in reply to charka]

If you have no thyroid at all then it is likely that you may need some T3, either from synthetic "liothyronine" or from "Armour" or other NDT (natural dessicated thyroid).

Can you ask for a printout of the results? You are perfectly entitled to them. What doctors call "normal" isn't necessarily "optimal" as the ranges can be very wide for some of them.

T3 and Armour are not often prescribed by GPs although there are a few who will prescribe. There are some endocrinologists that will prescribe T3, especially if the patient has no thyroid at all and is not responding well to thyroxine only. This is actually mentioned in the guidelines that if thyroxine only is not working, then a trial of T3 can be started. There are a few NHS endos that will prescribe Armour but not many. Most people that get prescriptions for Armour only do so after visiting a private GP.

There is more information about T3 and Armour on the main Thyroid UK website (on the link I gave above) if you look at the menu down the left hand side of the page I know it all seems rather too much information but it is worth taking some time to read the information on the website and try to absorb what you can. I know that's not easy when you are feeling so unwell.

I hope you find a solution soon.

Caorlyn x

[helvella Administrator in reply to charka]

Very much endorse CarolynB's response.

Please, please, please get your actual test results. See here:

thyroiduk.org.uk/tuk/NHS_In...

And do follow up the B12, D, iron/ferritin and folates - ask your doctor if he would run a test.

Rod

[Karl in reply to charka]

Hello Charka

I am in the same boat but not been on board for quite as long..

I am looking to get some T3 prescribed, I have no thyroid having had cancer 5 years ago. I have never once been prescribed t3 which i find weird as where is my body getting this from?

Armour is reportadly much much better than synthetic as its a natural replacement I will be looking to push for this from January, it cant be any worse than the levo that ive been on for the last 5 years..

good luck pal

[ritz]

gosh.........i got up to 250 of levo and it just made me feel worse and worse the more i took. so i went to see dr s and changed to armour and t3 which do work for me

[tingles]

Dr S, is Dr Skinner if you are new to this site x

[Totoro]

I was on 200mcg of T4 and although it had helped, I still felt awful and had many symptoms. Although my TSH was almost suppressed my T4 was only just over half way within the reference range. My T4 went up very slowly with increases and on that experience I probably could have gone up to 300mcg to 350mcg and still not been over range. So high doses do happen. I've known someone on 375mcg T4 before too.

Fortunately I got a trial of T3 and after some trouble and eventually finding a good endocrinologist I'm now on mostly T3 with 100mcg T4 and likely to move to T3 only.

The difference for me between T4 and T3 is striking. Basically T3 works much better for my body (won't be the answer for everyone though). Family and friends all remark on how much better and brighter I am too.

Some T3 might help you too. The thyroid gland produces both T4 and T3 and if you're on T4 only with no thyroid that's one of the reasons you're on a higher dose. You're not just replacing the T4 you would have had with your gland, you're taking more to replace the T3 you're not producing. T3 is the active hormone, your body converts T4 into T3.

Best of luck

[shaws Administrator]

Our own thyroid glands produce T3, T4, T2 and T1 and maybe some other things we aren't aware of. Previously before the TSH blood test was introduced everyone was diagnosed according to clinical symptoms alone and prescribed a natural dedicated thyroid hormone (made usually by a pigs thyroid gland) Levothyroxine a generic version was then made and contains T4 only which should convert to T3 but doesn't always suit some people or convert properly.

Also it is much cheaper and has been promoted as the only one to be prescribed despite complaints that patients still feel quite unwell. They are then told it is nothing to do with the meds or thyroid and you are then referred elsewhere.

There are several dessicated thyroid hormones but usually you have to go private. Occasionally a GP or Ends will prescribe.

As stated above your T3 may be low but I only got better by changing to a dessicated hormone which contains all the thyroid hormones.

[charka in reply to shaws]

thankyou, ive asked my my doctor why hes never told or suggested t3, he said it works for some but would not be a benifit to me ????

[PinkNinja in reply to charka]

How can he know this without trying it? Perhaps you should ask him to explain that. If he can't, then ask if you can have a trial of T3 to see if it does benefit you.

[charka in reply to PinkNinja]

hi carolyn

im having a full blood test friday and ive asked for a print out of the results.

i went to a hospital with a lump on my throat and they gave me an iodine drink in a sealed room, sadly the lump was not the thyroid gland, and on top of that the iodine drink was 3 times the amount it should have been, that was a lot of years ago.

roly

[shaws Administrator in reply to charka]

Unfortunately this, I believe, is what they've been told when they are trained. If you read the British Thyroid Associations guidelines you will see what I mean.

If you email [e-mail] and ask for a copy of the Pulse article by Dr Toft. Read question 6 as it tells your GP that some T3 can be added. When I was on Levo only the addition of T3 made an enormous difference. It may not work for everyone but is certainly worth a try.Your G.P will also be informed when you give him a copy as it is about other thyroid conditions. Dr Toft was President of the BRA.