So i have come across a lady that has had her thyroid removed an has never taken meds to replace them..has anyone else heard of this or no someone the same in not taken meds after a removal??
no thyroid no meds??: So i have come across a... - Thyroid UK
no thyroid no meds??
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farie02
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If she is still alive after several months I would guess they didn't remove the whole gland.
She may have had a partial thyroidectomy.
I wonder how she feels or is she used to feeling not so well. This is an extract:
How much of your thyroid gland is removed during thyroidectomy depends on the reason for surgery. If only a portion is removed (partial thyroidectomy), your thyroid may be able to function normally after surgery. If your entire thyroid is removed (total thyroidectomy), you need daily treatment with thyroid hormone to replace your thyroid's natural function.
What about iodine radiation ,would it be considered as complete removal of the thyroid?
Yes, iodine radiation destroys the thyroid and you must be on replacement for the rest of your life. It took me a couple of years to feel normal but there are still a few side effects that may never go away.
Wallye54, It will depend on how much RAI is given. A low dose may zap a toxic nodule without destroying the thyroid gland, but hyperthyroid patients are usually given a dose high enough to ablate the thyroid so it no longer functions.
_______________________________________________________________________________
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
No..you can still have some thyroid function left, but maybe not enough.
My aunt had RAI done and now in her old age, they tell her she needs no replacement, after being on thyroid meds, for 40 years. So apparently she has some thyroid function left..but i think the doctors are wrong. Probably because of that darn TSH test.
Interesting one!!
Last year when waiting for my thyroid blood test at the local hospital...talking to the lady next to me as you do......she said she doesn't have a thyroid,so I said that she must be on thyroxine then.......to which she replied that she doesn't take anything!!!!!!
At this point I opted not to further the conversation ...............???
She certainly seemed normal!! ...............whatever that is !!!!!!
dollcita in reply to
Also worth considering how soon this was after her total thyroidectomy...
After my TT, it was nearly 2 months before I was prescribed any hormone replacement, as they wanted to be sure that there was no remaining thyroid or cancer cells. During that time I was in and out the hospital for blood tests (and feeling terrible by the way!)
in reply to dollcita
She certainly didn't look as though she'd had any recent surgery and I think I was the one with the brain fog sitting there accepting what she said until the penny suddenly dropped!!!!
Still,all water under the bridge now .....don't suppose I'd ever meet up with her again to ask !!
she hasnt been on anythink for 20+ years..so could al us suffering be reactin to meds that are making is unwel
Have you ever tried going a few days without meds? Personally by the end of the second day I start feeling really weak. Getting out of bed on the third day is a struggle. I've never managed any longer than that.
Some people do feel really unwell on Levo, but as you know, NDTs are not a magic potion. The first brand I tried made me worse and the second took about 2 months before I felt an improvement. I really had to be consistent.
There are different reasons for getting a TT, so it's difficult to theorise on individual experiences. If someone with no thyroid feels well after an extended period without medication, I'd be very curious to see their blood work. It's something I'd be very cautious about, especially after ThyCa.
Yes! I went a couple of days when I forget my medication when visiting a friend - and had the same results as you did. I could hardly drive home.
what im experincing cant be anywher near as bad as what i go through after takin the meds i go to hell an ive tryed just bout all of them..body doesnt convert an hav even supplemented an no improvement...
If your body doesn't convert T4, then try T3. It is already converted before you take it.
im on a combo but think might be more to it y im not converting n the combos making me feel worse as each day passes natead of btter
Then drop the T4 and take T3 only. That's what I do because I couldn't convert T4 and it made me ill.
wat did you experince when unwel on levo
Not just Levo, any form of T4 : weight gain, hair loss, fatigue, problems with my nails, muscle pains, loss of muscle strength, loss of appetite, mood swings, depression... It was just like having the flu every day, day after day. I was practically bed-bound. I was bad on T4 only, a bit better on T4 + T3, but a 100 times worse on NDT. I'm best on T3 only.
I Don't have a gland anymore, destroyed by Hashi's.
so what form of t3 as im in nz an not sure of what t3 is avaible apart from compoundwd an that really is same as ndt its from dry pig gland..
I'm sorry, I have no idea what is available in NZ. I live in France. I take just ordinary synthetic T3 that I buy on-line, Tiromel. I Don't know if you can import that into your country.
not sure weather i can will ask specialist when chatting next to try this...now just had hair anlsis an has come back fine but very low amino acids protein..would this be big problem,?
I read you need to take your meds on an empty stomach because it's hard for the body to absorb. but I don't really Know may you need to look it up
Absolutely, Dorbara! If you Don't take on an empty stomach, you won't get the full benefit - or any benefit at all!
One hour before eating or drinking anything but water, or 2 to 3 hours after eating. 
i take every morning empty stomach then after t.. or 7oclock at 12 hours apart..
So, you take it twice a day. Have you ever tried taking it all in one go? That works better for some people.
i was taking at night but the t3 has shorter half life aparently hence mornin an night but ive gotten worse taken it like this..
It has a shorter half life in the blood, not in the cells. It goes on working in the cells for a long time. And it's more natural to take it at night, that's when the boy does all it's repair work.
farie02 in reply to
im wantin to try med free cos ever since they removed iv never been so horrible an un well an im woundering if my bodys reactin to al the meds n givin me poss side effects
Well, that tells me that either you're not on the right replacement hormone (and they are hormones, not 'meds' in the normal sense of the word, not drugs), or, you aren't converting properly, or you aren't taking enough.
OK, so I realise you can only get the one type in NZ, but can you not buy it on-line and import it yourself?
You say you get compounded T4 plus T3, but I Don't really know what that means. Does the pharmacist make it up himself? If so, can you not ask him to leave out the T4?
How much are you taking? Do you have any bloods to share with us so that we can understand the situation better?
Do you have any nutritional deficiencies? Most hypos do. And, if you Don't correct them, then the hormone you're taking will not be used properly in your body, and will make you ill. Have you tested your
vit D
vit B12
folate
iron
ferritin?
There are a lot of things to consider and doctors Don't know much about it. It isn't just a case of taking a little white pill every day and - bingo! - you're well again. But that's what they think. That's why fora like this exist, to help you cover all bases before taking the - inevitably - fatal step of stopping taking your hormone. Because you really, really cannot live without some sort of thyroid hormone.
hav forms for them to be checked again but last check specialist said they al fine..hence such fustraightion
But that's just his opinion! He could be horribly wrong. You need to see the numbers for yourself. Don't just take his word for it.
so wat ranges r best for thes test??
Which tests did they do? TSH should be one or Under.
FT4 up towards the top of the range.
FT3 at the top of the range.
But, having said that, optimal is when you feel well, not when your levels reach some magical number. Blood work is just a guide, not written in stone.
So, if you still feel ill, it's possible that your levels are wrong for you.
so new levels are strange...tsh 2.93 (0.4-3.8)
t4 10.5 (12.8 20.4)
t3 4.5 (4.0 6.8) how can t4 b out range yet tsh n normal...makes no sence...an to top it off i take meds at bed time an i feel shit al day til afternoon start comin right the take meds an feel horrided again but have to take somethink...h8 it wish i new if i could b wel without...
Well, that just goes to show what a rubbish test TSH is. What time of day did you have this test done? Did you eat before it? Did you leave 24 hours between your last dose and the test?
But, in any case, ignore the TSH, you need an increase because your FT3 is way too low.
Your FT4 is going to be low because you're taking T3. It doesn't matter.
The TSH is still too high, but an increase should bring it down.
How much T4 and T3 are you taking? It must be a very low dose. Just increase it.
Must have been a partial removal.
full
The body can't generate T4 without a thyroid. Either she misunderstood the doctor who did the removal, or the doctor missed a piece of thyroid but told her it was a full removal.
yes some people find it hard to beleiv that we may actually be able to function without thyroid..
It is absolutely not possible to function without a thyroid. Babies born without a thyroid in the past, died shortly after birth.
If you are functioning without taking any replacement hormone of any sort, more than a few weeks at the most, then you have at least some thyroid.
While it is true that we are all different and react to things in different ways, one thing is an absolute. A human being cannot live without a thyroid, any more than they could live without a heart.
I had what they called a sub-total thyroidectomy at age 18, I was told that I had only a tiny sliver of thyroid tissue left, but was fine without any thyroid replacement because that tiny little bit of thyroid was producing enough hormone for me. In fact, due to my having Graves' disease it grew again and at age 36 I had to have the rest removed as it had gone overactive again.
The second was a total thyroidectomy, and if I do not take my thyroid replacement (T3) I very soon start to feel so exhausted and brain fogged that I am unable to complete the simplest of tasks.
not possible..
to u that mayb..things arnt what we are made to beleive an guess u have to have a open mind or living proof to beleive😊
you cannot survive or have no symptoms, without a thyroid and no replacement hormone. You would go into a coma and die. Babies born like this..it is very obvious and require emergency treatment. It isn't possible, it's not a matter of my opinion, it is a fact.
Yup, I second that. You cannot live without thyroid hormones of some sort.
My neighbour is like this but I think they must have left part of it behind, what else could explain this?
that what we are told is incorrect an that the body can function without it..we beleive everythink we are told yet ther is living proof of people livin without...
It is perfectly possible (though very rare) to have functioning thyroid tissue elsewhere in the body. For example, Struma ovarii:
en.wikipedia.org/wiki/Strum...
thyroidmanager.org/chapter/...
However, in a logical sense, is equivalent to a partial thyroidectomy.
She may well have had a total thyroidectomy. I had a TT at the age of 18 and was then left with no hormone replacement for 18 yrs....by mistake! I slipped through the net for the first year and then moved to the States for 18 months. I never gained weight and was 9.5 stone until I was in my mid 30's. I did physical work, as a stone mason. At the age of 36 I started to get bad head pains and was seen by a GP in Oxford where I was working at the time. He did an emergency referal to the JR2 to see a Dr Burke in his clinic specialising in thyroid problems. My TSH was immeasurably high, off the scale!
He confirmed I had had aTT and stated I was both a medical mystery and miracle !
Because of pumping out huge amounts of TSH for many years I had developed tumourous nodules on my petuatory gland and have what is now called a TSHoma.
Most doctors I have told this to over the years initially say 'impossible'! until they bother to read my notes !
Further scans since then confirmed I have NO thyroid glands or partial remnants.
I had a terrible time trying to get stable on T4 for approx 3 yrs until I was tried on Eltroxin, which was just about tolerable.
I've posted on here about my experience once Eltroxin was taken off the market but through all of that distress I found this marvellous forum, and am now stable on NDT and feel the best I have in any years. I'm now in my early 60's and wonder what my life would have been like if I had been prescribed NDT instead of nasty synthetic levo.
Oh well.....
what is NDT and is it available in Aussie land? is it really totally superior to 'nasty synthetic levy' which I have been on a low dose for 12 years?
thanks, any info on the benefits of NDT compare to Oroxine (what I am on) are welcome! ozthyroid
hi Ozthyroid,
NDT is natural dessicated thyroid, which is taken from either bovine or porcine sources. There are a number of brands of NDT - Armour, WP Thyroid and Nature-Throid are a few of the products available.
GP's in the UK will not prescribe NDT's and so have to buy it for themselves. I've just started on WP Thyroid after 16 years on Levothyroxine, so it's a bit soon for me to say how it is. before you do start on an NDT, I would advise you to post your last 2 or 3 blood test results so that the very experienced people on this site can give you the benefit of their knowledge.
If you had had your Vitamin B12, Vitamin D, iron and folate blood tests done, please also post those results. If you haven't and you are still suffering hypo symptoms, then get your doctor the carry out the tests. It is not just the amount of thyroid meds you take but also a matter of optimising your vitamin and mineral intake so that you can get the best results from your thyroid meds.
best wishes x
Ozthyroid, I think Australia is strict about what may and may not be imported without prescription. You'll need to check your customs regulations. Compounded NDT is available in Australia and your GP may agree to prescribe it.
_______________________________________________________________________________
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Maggie and Clutter are dead right.
I am a great enthusiast of NDT after 2 and 1/2 years on a diabolical brand of Levo and a stupid Endo, the combination nearly killed me. I am now 98% normal on Armour (an NDT). Try to get your prescription from your doctor if you can. Keep shopping doctors until you get one who will prescribe it, I have to drive 400 miles round trip to the doc who prescribes my Armour. It's a long story as to why some docs will not prescribe NDT - some other time. If you cannot find a doc who will prescribe NDT you can get it without a prescription from a company who registers themselves on an island not far off the Austrailian coast. They do, of course, have a website. I know that sounds strange but Big Pharma has the strangle hold on synthetics and wants to push NDT off the market.
...also as for ferritin to be checked x
This lady probably takes Iodine
What would be the point of taking iodine if she has no thyroid gland to make thyroid hormones from it?
Thyroid hormones can only be made in the thyroid gland, nowhere else in the body.
Iodine is not a hormone. And it cannot replace hormones.
How would that help if she has no thyroid to use it?
I suggest you read David Browstein's book on Iodine. She may have some thyroid left. Iodine was used for years with thyroid issues.
Not with people who have no thyroid it wasn't! Iodine is used when people are iodine deficient, not when they're thyroid gland deficient.
I actually feel really well off of my levo even my hair stops falling out! butalas only for a bout 3 weeks and then the tiredness and pain all comes back. I do go without it periodically especially last year as I went into hyperthyroid whilst trying NDT. I am now being tested for autoimmune.
p.s. I do take Lugols iodine though.
so do u have no thyroid at all?? ive just had so much more trouble since they took it out im startin to wounder it id b better off it..its feels as if im just gettin side effects of the meds..my levels arnt within range but the more they play with everythink the more horrible i feel
Good morning Farie02 I am hypothyroid I do have my thyroid but I am trying to heal. Experts say it can take a year. I am on selenium, vit E, vit C, B'50 complex, magnesium, amino acids, boron, fish oils, NAC, Lugol's iodine, Taurine, zinc, copper, alpha lipid acid, Aswagandha, Dhea, good bacteria things and some for the brain cannot remember what they are called hee hee (they can't be working that well :0) I have gone gluten free also because I suffered terrible heartburn and good health starts in the gut. I also only eat grass fed organic meat from a specialise farm (no antibiotics). Some schools of thought do say thyroid and gut run in tangent. I take 50mgs of levo one day and 100mgs the next and alternate like this. I am hoping to get off of levo and do without or try to go back on NDT. I am trying to heal my adrenals first as my cortisol levels were way high. NHS has periodically checked me for Addison's interesting enough I read a report on here that hypothyroid and Addison's are very closely linked. The way Vit C levels and people living with low lying scurvy. This is working for me so far its a long haul (I was so ill last year).
Katherine xX
yes wel we have addisons in my family but somehow it skipd me..i think i hav issues in cortisol as level vis sliva were low but specialist hasnt addres this yet..
I am 55, i had 80% of my thyroid removed 7 years ago, the 20% left was granular and had nodules, this bit couldnt be easily removed as attached to my vocal chords, so surgeon left it and said it may need removing at a later date.
for 4 years i carried on as normal no one ever told me about thyroid replacement. I was still running 4 nights a week with British military fitness, walked doggy every day, gardening, riding, going out, i was always very active.
I noticed i was gaining weight for no reason, dr said it was my age, i was getting more tired than usual, dr said age, hideous periods, dr said age, massive weight gain...age etc etc by November 2012 i had to give up all exercise due to chronic pain in back, hips, knees etc dr said chronic arthritis due to age and too much sport all my life.
The list of symptoms became chronic, varied and many. I often said i thought it was connected to my surgery and was told no my thyroid was normal, i always questioned this as it was mainly removed and the bit left useless.
For 3 years i was extremely ill and eventually started self medicating, when dr saw how well i was getting he agreed prob was my thyroid after all, he is now treating me and monitoring.
So YES you can continue without meds but it will eventually wear you down into serious illness, i was so ill i was housebound, unable to move much, in constant pain and utterly depressed.
Farie02, what are the medication you're taking, is it Levothyroxine? Have you tried NDT instead?
I have no thyroid, And have been largely bedbound for nearly 3 years since my TT. Since before Christmas I've been changing over to NDT, Starting with a low dose. I've just been told my TSH is currently over 100 (and fT3 and 4 both well under range) on 1 grain of NDT. But I feel better than I did 2 months ago on T4 + T3, when all my blood numbers looked fine!
So I don't know how I will end up, but am hopeful I'm going to feel enormously better once NDT is stable.
im on compounded t4 t3 which i dont think is alot different..how do u manage mental im sufferin big time..an o need to functn for my kids
NDT is completely different compounded T4 and T3 is still just the synthetics and is the same as taking those two things as separate tablets it's what I was on up until November - just kept increasing my dose with a tiny improvement each time.
NDT is derived from pig (or cows) actual thyroid glands. So it contains T4, T3, T2, T1, calcitonin, And importantly every trace thing that a real thyroid produces, even if it's not known to science. For me so far, the difference between that and T4 + T3 has been like night and day.
But of course it doesn't work for everyone. And there are at least 3 other big things you can try 1) Make sure you are on the correct dose, do this by posting blood results here and people will comment 2) Make sure your ferritin.folate, vitamin D and vitamin B12 are in tip top shape - again, Dont take your doctor's word for it, see the tests yourself and make sure they are halfway up the ranges 3) Get your 24hr saliva adrenal test done, and if it's not looking good, treat your adrenals.
For me the biggest improvement with NDT has been mental stuff. I'm far more myself and can see the big picture, get curious about things, concentrate, and all the rest of it.
i have been tryed on the ndt whole thyroid with synthyroid an was bad but havnt been tryed just on ndt..i was told compounded was pig gland with wood filler to bind it..
aslo done silva test an they come bak low but specialist hasnt address that as he keep doin bloods n saing its fine.. i have posted latest ranges on profile..
compounded i was told is pig gland too.. but not wel on compound or ndt that ive come across..
Farie02 , I've just had a look at the on your profile. At the moment you are VERY undermedicated. TSH and fT4 are completely out of range, and fT3 is right at the very bottom. No wonder you feel terrible!
It sounds like you have tried several different forms of thyroid replacement, but none will work well unless the dose is right. If your doctor is telling you these numbers are good, they know nothing about treating hypothyroid.
Most people feel better with a TSH close to 1, fT4 needs to be in the top quarter of the reference range, and fT3 in the top third. To achieve this you need to increase your dose. Because yours is so out of range, you will probably need 2 or 3 small increases.
hi i found with the meds im currently on i am way to amped even with the low levels..so ive returned bak to synthyroid til i speak with doc..am bit confused as i feel shit al day til eveni g an i seem to start coming write then i take my meds then off we go again..im wounderin if its my meds making me unwel...only meds ive not tryed is straight t3..an i also had a low sliva cortisol which specialist done nothink bout...so bit confused as to whats goin on...
Farie, I have a similar pattern where i feel far far better in the evenings. I spend all day feeling rubbish, and then just as I start getting up and doing things its tine to go to bed.
I think this pattern is to do with adrenals. It's really important to get your adrenals sorted out, as your body can't make good use of thyroid medicine without them. It's the same with your nutrients: :ferritin, folate vitamin D and B12. These need to be halfway up their ranges. One of these things will be the reason you arent tolerating thyroxine.
Your doctor probably won't do all these things 
So some need to be done by yourself.
I have to agree that this woman still has a portion of her thyroid otherwise she would be suffering from all kinds of issues or dead. Mine was completely removed 40 years ago and if I miss to many doses I begin to have all kinds of problems.
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