thyroid misery

cltt97

Have you had your thyroid hormone levels tested recently? I don't have nodules, but my goiter definitely decreased on taking medication. Usually the goiter is there due to the deceased gland trying to keep up with the demand and growing in size.. but as I said I don't know about nodules. So might be worth getting re-tested. and as recommended try and get a TPO FT4 and FT3.

cltt97

Kloecor wrote: »

Well luckily I don't have Hashimoto's!

ah ok, well then you can forget about TPO. Maybe you should get your doctor to do an iodine status (usually urine test). And you need to be careful with the amount of iodine you take as well, it can happen that the thyroid gland, albeit starved of iodine will suddenly start protecting itself against the sudden onslaught of iodine and become even more deprived. It's a safety mechanism of the body. It's called the Wolff–Chaikoff effect. May be worth discussing with your GP

Kloecor

cltt97 wrote: »

Have you had your thyroid hormone levels tested recently? QUOTE]

Yes, I get them checked around every 3 months. Last 2 tests have been normal. I get very confused about all the different levels of different things. There always seems to be more and more stuff to learn about all this.

cltt97 wrote: »

And you need to be careful with the amount of iodine you take as well, it can happen that the thyroid gland, albeit starved of iodine will suddenly start protecting itself against the sudden onslaught of iodine and become even more deprived. It's a safety mechanism of the body. It's called the Wolff–Chaikoff effect. May be worth discussing with your GP

Do you mean I could be taking too much Iodine is it? I looked up the Wolff-Chaikoff effect.... I'm very confused (I'm not the brightest!) Is it where I take Iodine and then my own body starts producing it's own Iodine, and therefore I'd be getting way too much Iodine? Sorry, I'm slow at understanding some thing! :mad:

Greendiamond

This is a fantastic thread...so much info

For those with hashimotos .....I have read online it can increase the risk of other autoimmune diseases. Has anyone experienced any other issues?

Does your doctor take extra bloods to screen for other autoimmune diseases or how do you monitor this ?

cyning

I don't have hashimotos I have/had Graves Disease, and I'm tested every 6 months for diabetes and pernicious anaemia. My dad is a type 1 diabetic (and 3 aunts/uncles), and one grandmother had Graves too and the other pernicious anaemia... That granny also developed an under active thyroid before she died, and diabetes but we don't know if the thyroid was autoimmune or not. The diabetes wasn't.

So ya I keep a very, very close eye!!

RubyGirl

Finally got an appointment to see a Endo and was wondering what kind of questions should I be asking her. My only worry is this constant tiredness. Last time I was so tired I was diagnosed with under active thyroid and was put on medication. The tiredness went but now it's back and doctor said I don't need to increase medication.

Kloecor

RubyGirl wrote: »

Finally got an appointment to see a Endo and was wondering what kind of questions should I be asking her. My only worry is this constant tiredness. Last time I was so tired I was diagnosed with under active thyroid and was put on medication. The tiredness went but now it's back and doctor said I don't need to increase medication.

Same thing happened to me. The tiredness was KILLING me. Had to roll myself out of bed to do anything, was awful. Especially when people don't understand!!!!!:mad: Altho tests were saying my medication was spot on. I started taking kelp everyday and noticed a HUGEEEEEEEEE difference. Maybe it might help you aswell!! If I forget to take my kelp, the tiredness comes straight back within a day or two

RubyGirl

Kloecor wrote: »

Same thing happened to me. The tiredness was KILLING me. Had to roll myself out of bed to do anything, was awful. Especially when people don't understand!!!!!:mad: Altho tests were saying my medication was spot on. I started taking kelp everyday and noticed a HUGEEEEEEEEE difference. Maybe it might help you aswell!! If I forget to take my kelp, the tiredness comes straight back within a day or two

Thank's Kloecor, will give it a go, anything at this stage.

Kloecor

RubyGirl wrote: »

Thank's Kloecor, will give it a go, anything at this stage.

Just beware on different brands. Different brands = different strengths. The one I got was from Full of Beans. It was in a yellow and brown bottle. I take one everyday and two on wednesday, and two on saturday. It seems to work for me perfectly. Worth a try! Tis about a tenor for a years supply of it. Give it a couple weeks to keep in. Good luck!

Amazingfun

Kloecor wrote: »

Just beware on different brands. Different brands = different strengths. The one I got was from Full of Beans. It was in a yellow and brown bottle. I take one everyday and two on wednesday, and two on saturday. It seems to work for me perfectly. Worth a try! Tis about a tenor for a years supply of it. Give it a couple weeks to keep in. Good luck!

I am going to give this kelp a try, so thanks

Right now, I am down to a TSH of 2.5 (down from 30) and that has happened after taking Eltroxin for just under 6 months (I think), when I was diagnosed Hypo. I have noticed my alarming hair loss seems to have halted (Thank GOD) and I do indeed feel a lot better. I was taking daily doses of Nurofen plus for my achey joints for almost 4 years (bad, I know) and I was taking tramadol too, albeit very small amounts, when suddenly last month I just lost the urge to take either of them! After a little bit of withdrawal discomfort, I am now off all painkillers completely---it's like a miracle. I realize now that I was in so much discomfort on a regular basis that I was self medicating. I had no idea I was ill.

I take Iodine drops (usually 5-6) and 2 brazil nuts daily. I have been steering myself slowly onto a healthier diet, a big part of which has been taking gelatin and making bone-broths in the slow cooker, etc. I am eating a lot of veggies and fruit and have dropped bread for the most part, so the two stone I gained over the past four years seems to be slowly shifting (emphasis on slooooow). I am down half a stone.

But I have no delusions. I know my Doctor is sweet, but all she cares about is TSH, and I know that's not the full story and that although I may be doing ok for now, that can change, so I am going to be keeping on eye on things WHen she phoned me with my blood tests results she said "2.5 TSH is PERFECT" (I know it's not, lol), and she sounded delighted and said she will keep me on the 75 mg of Eltroxin.

All said and done, I am still finding I tire far too easily, but as I haven't done much other than lay around and sleep for years, lol, I am now trying to incorporate the gym and a consistent routine into things, and I hope that will help.

Best wishes to all who post here!

Wyldwood

Amazingfun, if you are already taking iodine drops daily I would be reluctant to add kelp to the mix. Too much iodine is not good, you could tip over into hyper, which is not nice from my experience. Also, you need to be sure of the source of the kelp as a lot of it has toxic metals which can cause liver or kidney problems if over-ingested.
Real iodine deficiency is rare in the developed world, most people get enough through diet and sea salt.
I'd run it by the GP before taking it.

Kloecor

Amazingfun wrote: »

I take Iodine drops (usually 5-6)

Oooooooo I wouldn't mix these with kelp. Maybe try only taking the kelp for a couple months to see if you find it better than the Iodine drops.

Really hope you get sorted soon. Sounds quite awful!

cyning

I'm off my eltroxin almost a month now and feeling great so hopefully the T3 only is doing the trick... And my hair is growing back, and I've lost 4 pounds. A little insomniac-y still and tired and no concentration but more my little girl and first time mammy syndrome than thyroid I think!Ill go for bloods this week so hopefully my TSH has stabilised.


Fingers crossed

RubyGirl

cyning wrote: »

I'm off my eltroxin almost a month now and feeling great so hopefully the T3 only is doing the trick... And my hair is growing back, and I've lost 4 pounds. A little insomniac-y still and tired and no concentration but more my little girl and first time mammy syndrome than thyroid I think!Ill go for bloods this week so hopefully my TSH has stabilised.


Fingers crossed

Thought once you were on eltroxin you have to be always on them?

cyning

My endo thinks I have resistance to T4... I've been on doses from 50-500 of eltroxin and no matter what I'm on my blood results/ symptoms rarely if ever change. So I'm off them to see if there is a change and in just not absorbing them at all... I take ti-tre now so t3 alone just to see if it helps.

You normally would be on eltroxin for life, I'm just odd!!

Orla K

I think its more that once your on thyroid meds your on them for life but you can switch around the types of meds eg you can go from T4 only to T3 or a T4&T3 combo or NDT(armour) to find which is best for you.


I'm quite excited tomorrow I get to up my meds again, I'm getting close to where it should be!

Kloecor

cyning wrote: »

I've been on doses from 50-500 of eltroxin

500!!!OMG!!! You must have been taking a lot of pills.... must have cost a lot too!! That's crazy haha

cyning

Kloecor wrote: »

500!!!OMG!!! You must have been taking a lot of pills.... must have cost a lot too!! That's crazy haha

Which is why I firmly believe you need a good endo: that particular endo thought (as in said) I wasn't taking my tablets because my results were so off the wall, and that couldn't "possibly" be happening. He did test my adrenals but when those results came back that was it, he didn't even want to see me again, and wrote my GP a letter telling him to keep increasing my dose up to 500: even at 500 my TSH could have been 40 or 50, my T4 stuck at 9 and my T3 was just barely normal. And that was as a private patient When I was pregnant the hospital wanted me to attend his clinic and I point blank refused: I attended my endo privately in a different hospital.

Like everything though he is excellent when it comes to diabetics, but I found him worse than useless.

And yup it did cost alot: but i find the price of Ti-Tre far more puzzling: I've been charged between €1.50 and €30 for my months supply in the same chemist: I'd ask but I'm afraid they'd start charging me the €30 every month than instead

Deepsurf

Kloecor wrote: »

Was researching selenium. Sounds great. Says it's great for goiters. I have a multi nodular goiter so I think I'm gonna get some Selenium and see if it helps reduce my goiter. I was told by my doctor that because I'm taking Eltroxin anyways it'd reduce the size of the goiter but it has only gotten bigger. It's getting annoying how big it is now!

Please go get that checked. I had same and when it gets bigger you need to get an ultrasound.

lovelystuff

Hi all,just popped in for some advice. I'm seeing the consultant this week,and my tsh has gone up the last 2 visits despite increases in medication (levothyroxine 75mg)my tsh was 3 back around Halloween,so they upped my dose to 50mg a day,then tsh went to 4 before Christmas so they had me at 50+75 on alternative days,now my tsh is up to 5.5 and I'm on 75 a day. Is there any questions I should ask,maybe about iodine ?just unsure why it keeps getting worse despite increases,maybe its settling down? Thanks everyone

Kloecor

Deepsurf wrote: »

Please go get that checked. I had same and when it gets bigger you need to get an ultrasound.

I'm sorry, I forgot to mention that I did indeed get an ultrasound done on it That's how I found out it was a multinodular goiter Do you have the same type of goiter? Does yours get bigger? It's really starting to bug me It feels like there's pressure on my throat now

lovelystuff

So I saw the doctor on Thursday in endocrinology department,she told me my tsh getting worse is 'just one of those things' and to stay away from iodine and kelp etc.kept on the same dosage so we will see I guess!

Kloecor

lovelystuff wrote: »

So I saw the doctor on Thursday in endocrinology department,she told me my tsh getting worse is 'just one of those things' and to stay away from iodine and kelp etc.kept on the same dosage so we will see I guess!

Do you know why she said to keep away from iodine and kelp? eek! :eek:

lovelystuff

Kloecor wrote: »

Do you know why she said to keep away from iodine and kelp? eek! :eek:

She didn't elaborate, and was in a hurry to finish up so I didn't get any answers :(I was hoping kelp or iodine could help,I'm so sick of feeling like this

cltt97

I suppose the thing with the "stay away from iodine" is to do with the general assumptions that iodine can be harmful for people with Hashimotos, due to firing up the inflammatory process. But as I've said previously, I am not entirely sure how up to date this assumption is, as there appears to be more evidence now that in tandem with selenium it might be ok. But I haven't had the time to properly look into this or discuss with my Endo, so am not sure if this is indeed the case.

About the TSH - I remember my endo once explaining to me that it can happen that the TSH remains high despite the fact that things have normalised, and this can be due to the pituitary gland, which produces TSH, having gone into overdrive due to the continuous demand, and that it takes a while for this to normalise again. So I suppose sometimes endos will want to wait for a while before adjusting meds to see if the observed TSH is due to this overdrive or indeed due to the body's need for more thyroxin. Which for me is another reason why endos should also always look at free T4 and free T3.

lovelystuff

Thanks for your reply I know I need to be patient,I just find it a pain when I'm doing everything right diet and exercise wise,and getting lots of sleep,to still feel like this. I was doing so well too,beginning of February I woke up one morning feeling like I was hit by a tonne of bricks and its been like that since! I do trust the endo I must say,and I feel I'm taken seriously which is probably half the battle

spurious

The more I read about various people's treatment and experience with different endos and doctors, the more I am convinced they haven't a clue what to do with thyroid people.

For the small number that fit into the 'take the Eltroxin and you'll be grand' category it's fine, for the rest of us I don't think they have any appreciation of how complex the effect of a non (or over) working thyroid has on all the other hormones.

It's not the 'glamour' disease (with all the associated funding and investment) that diabetes is, so it gets left to chug along with the 'take the Eltroxin, you'll be grand' approach.

cltt97

It's a long road and I totally feel your pain. I am actually a bit surprised that they did not increase your dose to 100 to be honest.
I refer to these times as "comatose" :-) I get them, too. Sometimes for no reason whatsoever. I have found this spring very difficult myself, I think the lack of warmth is not helping at all. I find it is a total balancing act - if I exercise too much, I pay for it, if I eat too much crap, I pay for it, if I have to much stress, I pay for it, if I don't sleep enough, I pay for it, if I stop taking certain supplements I notice a difference. So all of this in mix and match combination can make a huge difference. And sometimes I do everything perfect, and still don't feel as well as I should. But I'm getting better at learning what I can or cannot do :-)

cltt97

spurious wrote: »

The more I read about various people's treatment and experience with different endos and doctors, the more I am convinced they haven't a clue what to do with thyroid people.

For the small number that fit into the 'take the Eltroxin and you'll be grand' category it's fine, for the rest of us I don't think they have any appreciation of how complex the effect of a non (or over) working thyroid has on all the other hormones.

It's not the 'glamour' disease (with all the associated funding and investment) that diabetes is, so it gets left to chug along with the 'take the Eltroxin, you'll be grand' approach.

+1 - My general observation. If it wasn't for my persistence and having found a good endo who was willing to work with my "non standard response to thyroid treatment" I don't know where I'd be now!

lovelystuff

cltt97 wrote: »

It's a long road and I totally feel your pain. I am actually a bit surprised that they did not increase your dose to 100 to be honest.
I refer to these times as "comatose" :-) I get them, too. Sometimes for no reason whatsoever. I have found this spring very difficult myself, I think the lack of warmth is not helping at all. I find it is a total balancing act - if I exercise too much, I pay for it, if I eat too much crap, I pay for it, if I have to much stress, I pay for it, if I don't sleep enough, I pay for it, if I stop taking certain supplements I notice a difference. So all of this in mix and match combination can make a huge difference. And sometimes I do everything perfect, and still don't feel as well as I should. But I'm getting better at learning what I can or cannot do :-)

Thank you,I feel like I have been moaning here a lot,I just don't know anyone my age trying to balance it,so its brilliant to get the moral support :)I think I still push myself too hard,I'm a perfectionist in work and college so I have been doing a lot recently (coming up to phd hand in),which in fairness probably isn't helping. This thread is like a support group to me,so helpful