thyroid misery

Amazingfun

cyning wrote: »

It has taken me an age to say that and it might just be a lull but hopefully it lasts! I'm breastfeeding and have an 11 month old so the combination of trying to eat healthier and no skipping meals and running around after her seems to have really helped. I'm walking at least 3 miles a day with her up in a sling (23 pounds!) so the exercise seems to be really helping me feel like me again. Every time I take up exercise I feel ten times better but the first few weeks are torture especially with the tiredness.

Weighed myself today and had lost 10 pounds in the last 3 weeks so umm ya apparently I am losing weight just hasn't noticed it

I don't take any eltroxin, just T3 on its own. I don't convert t4 to t3 so eltroxin never did me any good (despite being on 500mg at one stage). Ask your doc to look up T3/T4 combination therapy it might be worth a shot?

A kind person from another site gave me a tip on a GP in Dublin who does prescribe Armour et al no problem, and who seems to really understand that not everyone does well on Eltroxin. So after I get the test results back from my own GP this week, I am going to bite the bullet and go see what I can get done there. It's clear now that my own has no interest whatsoever in learning anything more about treatments other than TSH/Eltroxin. It's not an attitude I appreciate, but I know she is far from being the only one like this.
The bottom line is that I simply cannot go on like this. I have to take some action. And like you, I do feel better after exercise, even if it seems to take a monumental effort to even get in the door these days, the fact is it can only help.

**Just wanted to say again how good it is to hear of a recovery story. They make me feel a lot better and I'm sure help other's too to realize there is a light at the end of the tunnel. Nice to picture you out in the sunshine with yer baby feeling good and grateful Long may it last!

seven_eleven

slept 13 hours last night and woke up feeling so weak and tired. took me about 4 hours before I worked up the energy to take a shower. Not sure if its just me being lazy or the thyroid but I easily sleep 12 - 16 hours each night if I was given the chance.

Face is also hanging off me with dry skin. The warm weather kind of helps it though.

Once again, I dont know if I should be putting this down to the thyroid or just me having a crappy personality or what.

Amazingfun

seven_eleven wrote: »

slept 13 hours last night and woke up feeling so weak and tired. took me about 4 hours before I worked up the energy to take a shower. Not sure if its just me being lazy or the thyroid but I easily sleep 12 - 16 hours each night if I was given the chance.

Face is also hanging off me with dry skin. The warm weather kind of helps it though.

Once again, I dont know if I should be putting this down to the thyroid or just me having a crappy personality or what.

lol, that made me laugh

seven_eleven

Amazingfun wrote: »

lol, that made me laugh

Amazingfun

seven_eleven wrote: »

I thought it was a joke, I mean, you did stick yer tongue out?!
I am sure your personality isn't the problem.

I know this thing has affected my personality though, and not for the better. I just don't "care" about my friends the way I used to, seems the limited energy I have is all used up by my family members, they are all I can really handle these days. I don't feel good about it and I know my friends feel it, and I've tried to explain, but it's very difficult to explain this illness to people who don't know anything about it. My world has become a lot smaller in some ways, and if not the internet, would be even smaller.

I am in a phase much like you at the moment, if you've read my recent whiny posts you'll see I too have been sleeping hours and hours and still exhausted. Today I forced myself out and cycled a good distance in the sun, was so lovely. I stopped at the health-shop and bought some coconut oil, some magnesium and this stuff called 'Ashwagandha". This is in addition to my stock of Sea Kelp, my liquid iodine, and my high dose Vitamin D, lol....my kitchen looks like a chemist shop. I am not taking all of this, in fact I stopped most everything except the Vitamin D while I got myself sorted food wise (gluten free!) and await the results of my most recent bloods.
Just have to keep up the trial and error process.

I hope you start feeling better, the fatigue is unreal, trying to explain it to people who don't get it is the worst, and a total nightmare when those people are Doctors

cltt97

@seven_eleven

You said you've been told 3 years ago that you have an underactive thyroid, but that they haven't treated it. Do you know if the underactivity is due to an auto-immune disease? If the latter is the case I would demand to be treated asap. Because it is only going to get worse, and the earlier you catch it and maintain the status quo, the better. The longer this goes on, the harder it becomes to treat, the longer it will take to get better, the more likely you are to experience difficulties and the more symptoms you will have to battle. So if you don't know whether it is autoimmune or not, go and ask for an anti-TPO test. Everything you have said so far fits the bill, but of course there could be other reasons, but the fact that you know you have an untreated underactive thyroid somewhat points in that direction.

Greendiamond

Hi

I saw an endo last week and was left unfulfilled !

I had a TSH of 6 back in February , my own doctor tested again in may and it was down to around 3 but I had high antibodies so he referred me to endo.
Endo said they don't medicate till the TSH is constantly high.

I feel myself like I fluctuate sympthoms wise. Around February I was feeling awful, cold,tired, inability to lose weight etc. then the last few moths I felt better and was wondering had I imagined it.

So what do I do when my TSH is fluctuating high? Just suck it up till TSH stays high? Endo also said my weight issues are nothing to do with my thyroid and that I am not really at risk of other autoimmune issues. Gluten plays no part so no needto avoid but I am worried about the autoimmune issue as there is a history of alopecia, celiac and thyroid problems on both sides of my family.

I thought the endo would order more tests but I am just to test my levels in three months and then every year with my GP.

Any thoughts? Do I have hashimotos ? Will it eventually result in consistently higher TSH levels ?

Amazingfun

Greendiamond wrote: »

Hi

I saw an endo last week and was left unfulfilled !

I had a TSH of 6 back in February , my own doctor tested again in may and it was down to around 3 but I had high antibodies so he referred me to endo.
Endo said they don't medicate till the TSH is constantly high.

I feel myself like I fluctuate sympthoms wise. Around February I was feeling awful, cold,tired, inability to lose weight etc. then the last few moths I felt better and was wondering had I imagined it.

So what do I do when my TSH is fluctuating high? Just suck it up till TSH stays high? Endo also said my weight issues are nothing to do with my thyroid and that I am not really at risk of other autoimmune issues. Gluten plays no part so no needto avoid but I am worried about the autoimmune issue as there is a history of alopecia, celiac and thyroid problems on both sides of my family.

I thought the endo would order more tests but I am just to test my levels in three months and then every year with my GP.

Any thoughts? Do I have hashimotos ? Will it eventually result in consistently higher TSH levels ?

I am still learning (obviously) but what your line here reminded me of was something I read on the 'Stop the Thyroid Madness' page:

As it progresses, you may feel very hypo one day, and very hyper another, which is caused by the destruction of your thyroid.

http://www.stopthethyroidmadness.com/hashimotos/

You need to be tested for specific antibodies to confirm a Hashis diagnossis, but according to this site and others, 90% of hypothyroid conditions can be credited to Hashis. I still don't know if I have it either, like, not for sure, but it seems like it. My tsh was 29 last October. I have had numerous immune-type challenges all my life, a stint with alopecia included. Also, psoriasis, cold sores, etc. I have now dropped gluten because it seems almost ALL the hypo-sites I am reading recommend it.

Amazingfun

Ok so blood test results in : TSH 12, was 2.5 in February. I suspect however that was a false low, as I had taken my eltroxin only an hour or so before I went in that last time, and only realized later people are advised not to do that. So this test I didn't take it until after my bloods were done, and this was the result. So I am picking up a script for more eltroxin today (shocker, lol) Here we go again!

Orla K

I'm getting an appointment for an endo. Does anyone know around how long it will take on a medical card, I'm not good at waiting.

I think it's with Dr Moore, anyone here go to him? What's he like?

Amazingfun

Orla K wrote: »

I'm getting an appointment for an endo. Does anyone know around how long it will take on a medical card, I'm not good at waiting.

I think it's with Dr Moore, anyone here go to him? What's he like?

I don't know about the 'medical card' specifically, and not sure about other places but but at the Mater I was told they do it by priority, the team decides who represents an 'urgent' case and they go by that. So she said it could even be 2 years before a letter for an appointment is sent. All depends.

ants09

Anybody have any complications because of a overactive thyroid ?
I had an underactive thyroid and now have a overactive thyroid and have graves disease

CathyMoran

ants09 wrote: »

Anybody have any complications because of a overactive thyroid ?
I had an underactive thyroid and now have a overactive thyroid and have graves disease

Had graves a young child - on eltroxin now - it runs in families from my experince.

ants09

CathyMoran wrote: »

Had graves a young child - on eltroxin now - it runs in families from my experince.

Right what happen in relation to graves ? was on eltroxin 5 mg per day and now on neomercazol 15mg per day

CathyMoran

ants09 wrote: »

Right what happen in relation to graves ? was on eltroxin 5 mg per day and now on neomercazol 15mg per day

Sorry, I was very young when I had it(2-4), the thyroid went underactive later. Iremember being in hospital and them saying to my parents about it but not much else. I missed most of jr infants.

ants09

CathyMoran wrote: »

Sorry, I was very young when I had it(2-4), the thyroid went underactive later. Iremember being in hospital and them saying to my parents about it but not much else. I missed most of jr infants.

Thanks

CathyMoran

I can ask, my daddy had the surgery when he was 24 as did many of my aunts and uncles. Doh, I do know that I went underactive afterwards.

ants09

CathyMoran wrote: »

I can ask, my daddy had the surgery when he was 24 as did many of my aunts and uncles. Doh, I do know that I went underactive afterwards.

that be fantastic if you wouldnt mind

cyning

I have Graves. I was diagnosed at 16 and was hospitalised was taking neomercazole and inderal to deal with the palpitations. I had weekly blood tests for 3 months and monthly ones then for a year and every 3 months after that. I was taken off them when I was 19 and immediately went very over active. They dont leave you on neomercazole long term particularly not if your a woman who may have kids in the future/now. Symptoms wise I had palpitations, panic attacks, fainting, rapid weight gain (unusual but can in rare occasions happen), and a massive appetite. Insomnia, twitching and quite hyper in general. I was put back on neomercazole and inderal and propylthiouricil (sp?). I got radioactive iodine. That was totally painless had to avoid kids and pregnant people for a few days!

After that I went underactive. Being underactive isn't easy but I would take been underactive any day of the week over been over active. I'm 27 now and finally seem to be symptom free (touch wood and all that)!

ants09

cyning wrote: »

I have Graves. I was diagnosed at 16 and was hospitalised was taking neomercazole and inderal to deal with the palpitations. I had weekly blood tests for 3 months and monthly ones then for a year and every 3 months after that. I was taken off them when I was 19 and immediately went very over active. They dont leave you on neomercazole long term particularly not if your a woman who may have kids in the future/now. Symptoms wise I had palpitations, panic attacks, fainting, rapid weight gain (unusual but can in rare occasions happen), and a massive appetite. Insomnia, twitching and quite hyper in general. I was put back on neomercazole and inderal and propylthiouricil (sp?). I got radioactive iodine. That was totally painless had to avoid kids and pregnant people for a few days!

After that I went underactive. Being underactive isn't easy but I would take been underactive any day of the week over been over active. I'm 27 now and finally seem to be symptom free (touch wood and all that)!

In relation to graves did you have a operation? And do you still suffer from it or get any complications from it?

cyning

ants09 wrote: »

In relation to graves did you have a operation? And do you still suffer from it or get any complications from it?

Well the graves is in essence too much thyroid hormone being produced. So when I had the radioactive iodine (its just a tablet) it kills off the thyroid gland so that makes you underactive then. I don't think surgery is the preferred option because there are other risks associated with it. Ill always have a dx of graves so say when I was pregnant I had antibody levels checked to see risk to babs etc. The complications are that you go underactive which then brings its own problems. None as severe as being over active. A few in my family have graves aswell none have had any issues regulating their thyroids after. Have you been referred to an endo?

ants09

cyning wrote: »

Well the graves is in essence too much thyroid hormone being produced. So when I had the radioactive iodine (its just a tablet) it kills off the thyroid gland so that makes you underactive then. I don't think surgery is the preferred option because there are other risks associated with it. Ill always have a dx of graves so say when I was pregnant I had antibody levels checked to see risk to babs etc. The complications are that you go underactive which then brings its own problems. None as severe as being over active. A few in my family have graves aswell none have had any issues regulating their thyroids after. Have you been referred to an endo?

Already seeing a endo. And eye doctor in relation to graves.
Why you say I don't think surgury .... other risk associated with it?

CathyMoran

ants09 wrote: »

Already seeing a endo. And eye doctor in relation to graves.
Why you say I don't think surgury .... other risk associated with it?

I would have prefered the surgery, less issues from what I can see.

cyning

ants09 wrote: »

Already seeing a endo. And eye doctor in relation to graves.
Why you say I don't think surgury .... other risk associated with it?

Because with surgery they are operating on your neck. There is a real risk of damage to the parathyroid glands which can cause lifelong issues with hypoparathyroidism as well as hypothyroidism. There is also the risk of damage to your vocal chords which can leave you permanently hoarse. Add into that you will be recovering from major surgery on your neck. I got my RAI done in Galway they wouldn't even consider surgery I asked was it a better option when they explained why they don't routinely do it I totally agreed with them. I get keloid scarring too so definitely didn't want that on my neck! I think there's far more issues with surgery than RAI to me anyway. Obviously there are times when surgery is the preferred option too

I had the popping eyes and a goitre too. The eyes went mostly away and so did the goitre.

ants09

cyning wrote: »

Because with surgery they are operating on your neck. There is a real risk of damage to the parathyroid glands which can cause lifelong issues with hypoparathyroidism as well as hypothyroidism. There is also the risk of damage to your vocal chords which can leave you permanently hoarse. Add into that you will be recovering from major surgery on your neck. I got my RAI done in Galway they wouldn't even consider surgery I asked was it a better option when they explained why they don't routinely do it I totally agreed with them. I get keloid scarring too so definitely didn't want that on my neck! I think there's far more issues with surgery than RAI to me anyway. Obviously there are times when surgery is the preferred option too

I had the popping eyes and a goitre too. The eyes went mostly away and so did the goitre.

CathyMoran wrote: »

I would have prefered the surgery, less issues from what I can see.

I not talking about surgery in relation to hyper thyroid. i talking in relation to graves and on the eye's

cyning

ants09 wrote: »

I not talking about surgery in relation to hyper thyroid. i talking in relation to graves and on the eye's

Ok but Graves is generally hyperthyroid and everything else generally considered side effects.

I haven't had surgery or anything else on my eyes when my thyroid came under control my eyes "fixed" themselves.

dollydishmop

I have Grave's and had TT surgery in 2010.

I had exopthalmia in both eyes, more so in my right eye.

After my TT my eyes vastly improved. Left eye is virtually normal now, and right eye only noticeable now if you're really looking for differences. I have my eyes 'measured' once a year now.
They still water up for no apparent reason, and go dry at times too...but they are far less 'bulgy'.

However, I also know of others who've had thyroid/goitre surgery, who have still required orbital decompression afterwards.

YMMV

inocybe

How do you get diagnosed with Graves? I have an overactive thyroid, treated with neomercazole. But I don't know the cause - waiting 5 months so far to see an endocrinologist Is there a blood test?

cyning

inocybe wrote: »

How do you get diagnosed with Graves? I have an overactive thyroid, treated with neomercazole. But I don't know the cause - waiting 5 months so far to see an endocrinologist Is there a blood test?

They can test for antibodies via a blood test. Hope you get an endo appt soon

In my case the bulging eyes, goitre and history of autoimmune diseases was enough to give a dx of Graves. The antibodies just confirmed it.

CathyMoran

In my case my father knew that I had it (as he, my aunts, uncles and grandparents on his side had had it) - he got me tested by an endochrinologist. I have a few other overactive imune system illnesses (Type 1 diabetes diagnosed when I was 10 and sarcoidosis diagnosed when I was in my mid 30's). There are worse things than graves and I have some of them:P