thyroid misery

Rosie1983 · 15-10-2013 6:31pm

Hi cltt97. You're probably right, I should probably ease off on the running a bit. As I said I went for three 4k runs last week, last one on Sunday and I'm now feeling quite wrecked! Also it's that time of the month, and since I came off the pill a few months ago my period cramps are a bit worse now. So my body's probably telling me to rest up, especially with the weather changing. Hopefully I'll feel back to normal in a few weeks when I get the Erfa back. Might ring my endo tomorrow to tell him I'm feeling a bit wrecked, see what he says.

Does anyone practice yoga to help with their thyroid? I've been doing yoga for 12 years on and off. I've just finished a 12 month college course that was mostly in the evenings, so I haven't been able to go to a class in about a year, but I'm getting back into it. I spotted a special workshop coming up on the throat chakra and the thyroid. It's happening on the 19th October in the Open Mind Yoga studio on Pearse Street in Dublin City centre if any is interested. I don't know if i'm allowed to post links to other websites but I can post more info if anyone else wants to go? I've booked a place. I'm really looking forward to going, and to starting a regular yoga class again soon...

Rosie1983 · 15-10-2013 6:40pm

Orla K wrote: »

I think in the last few months armour has changed back to it's original formula. And I completely agree with the stress thing all hormones are connected if one's off the others are more likely to be off and there's a big connection with adrenal/thyroid. So if your stressed best to take it easy and not give yourself any unnecessary stress.

I just got a stress dose when I went out the door to find two guys loading up my car onto a truck(ie stealing it!) I gave them an earful but after family drama over the weekend I needed to give someone an earful! (they backed down pretty easy too once I got going)

Lovelystuff and Orla K, I get sore joints sometimes too. Feel like an old lady and I'm only 30! Sometimes it's the day after a run or just if I'm tired. I find hot baths with epsom salts really help. you can add bread soda and essential oils like lavender too. The skin on my body has gotten very dry and sensitive again so I need to start looking after it more. Coconut oil is great, or any good quality natural oil (sesame oil, almond oil or good body butters) massaged into your skin. I used to take fish oil capsules but hated the after taste, so I've decided to try and eat as many healthy fats this month as I can; nuts, seeds, avocados, oily fish. I think I need to oil my joints from the inside out! As Nigella Lawson often says she eats a lot of good fats and considers it moisturising from the inside!

Orla K that's awful to find someone outside your house stealing your car! I'd have a heart attack! We just came home to find a garda car parked outside our building but no sign of anything. Stress can be awful, tell me about it!

lovelystuff · 15-10-2013 6:57pm

Rosie1983 wrote: »

Hi cltt97.
Does anyone practice yoga to help with their thyroid? I've been doing yoga for 12 years on and off. I've just finished a 12 month college course that was mostly in the evenings, so I haven't been able to go to a class in about a year, but I'm getting back into it. I spotted a special workshop coming up on the throat chakra and the thyroid. It's happening on the 19th October in the Open Mind Yoga studio on Pearse Street in Dublin City centre if any is interested. I don't know if i'm allowed to post links to other websites but I can post more info if anyone else wants to go? I've booked a place. I'm really looking forward to going, and to starting a regular yoga class again soon...

I would like to do yoga again for stress levels,I just find I get so light headed doing it with my adrenals that its not really possible :-(

Talisman · 15-10-2013 7:12pm

Forgive the intrusion - I just stumbled upon this thread having seen it listed on the home page and it piqued my interest as my sister had thyroid issues for years and eventually had her thyroid removed but the symptoms persisted - joint pain, weight gain, hair loss, chronic fatigue, head fog, undiagnosed coeliac disease.

Have any of you been tested for Lupus? My sister was diagnosed a few months ago while on a trip abroad. Her regular doctor didn't have her tested for it because she didn't have the 'butterfly rash' on her face.

Rosie1983 · 15-10-2013 8:42pm

Talisman wrote: »

Forgive the intrusion - I just stumbled upon this thread having seen it listed on the home page and it piqued my interest as my sister had thyroid issues for years and eventually had her thyroid removed but the symptoms persisted - joint pain, weight gain, hair loss, chronic fatigue, head fog, undiagnosed coeliac disease.

Have any of you been tested for Lupus? My sister was diagnosed a few months ago while on a trip abroad. Her regular doctor didn't have her tested for it because she didn't have the 'butterfly rash' on her face.

Hi no I've never been tested for lupus. Can't speak for anyone else. I don't know that much about it except that it's a very debilitating disease. I've never considered it in relation to my own thyroid symptoms and I don't know if there's any link between the two, except the autoimmune factor. But if your sister is having many thyroid related symptoms like you say, she could need more or different treatment. I would imagine if you've had your thyroid removed, you need to have it monitored regularly to check the levels of whatever thyroid meds youre on...

I did have a full blood panel done a few years ago and they tested my for celiac disease, and I didn't have the antibodies. My hypothyroidism isn't autoimmune as far as they know. But it is in my mother's family...

Talisman · 16-10-2013 10:02am

Her doctor had suggested that her thyroid problems were actually a side effect of the undiagnosed coeliac disease. Her test result for coeliac disease was negative but her health improved when she went gluten free hence the undiagnosed coeliac disease.

http://thyroid.about.com/cs/latestresearch/a/celiac.htm

A consultant she attended told her that people of Britain/Ireland origin have a 1 in 3 chance of not having some form of coeliac disease - most people have the undiagnosed strain and the only way to get the confirmed diagnosis is to get the biopsy of the intestine wall or a genetic test. The blood test is unreliable because most carriers of the bad genes also have an IgA deficiency which is what the blood test screens for.

lovelystuff · 17-10-2013 12:48pm

So I just got my bloods back,my tsh has gone from 1.1 up to 3.85, but they said its not increased enough for them to up my medication. I feel devastated because I feel so awful and I don't see how I can feel better without an increased dose :-(

ttoppcat · 17-10-2013 2:04pm

Hi guys, new to posting here but I've been reading this thread on and off for a good while now. I'm wondering if anyone can recommend a good GP in the Galway area in relation to thyroid issues. Thanks

Amazingfun · 17-10-2013 2:09pm

lovelystuff wrote: »

So I just got my bloods back,my tsh has gone from 1.1 up to 3.85, but they said its not increased enough for them to up my medication. I feel devastated because I feel so awful and I don't see how I can feel better without an increased dose :-(

Terrible, I really feel for you. Back in March, my TSH came back as 12.4 and this was after months on Eltroxin already, it was so depressing.

It's up to you, but people self treat for the very reasons you just outlined.

TSH isn't everything, but apparently most of us don't feel good unless its suppressed (less than 1.) and yours has risen quite a bit.

I hope you find a solution that works for you, but I recommend not being a victim of bad treatment when you don't have to.

_EimearNi_ · 17-10-2013 2:14pm

lovelystuff wrote: »

So I just got my bloods back,my tsh has gone from 1.1 up to 3.85, but they said its not increased enough for them to up my medication. I feel devastated because I feel so awful and I don't see how I can feel better without an increased dose :-(

I understand how you feel, I've been through the very same problem myself. I think we know ourselves when things are not going well. Its the depression that comes with this that makes it so bad on us as we put so much pressure on the right results. I've been a year and half at this and only now am starting to see big improvements in my results.
It had gotten so bad that I went and spoke with my doctor looking for a higher dose of eltroxin and he said that it wasn't bad enough. I got upset and cried and tried to explain to him what it is like living with this day to day and its not as easy as he would think. Eventually he did give me the higher dose and within two weeks I felt loads better, now I don't know if this is psychological or what but i do know I felt a lot better myself, and have continued to feel great on this dose.

I hope things all work out for you.

lovelystuff · 17-10-2013 3:11pm

Guys I actually had a little cry reading your lovely responses, thank you so much its so amazing to get your support. My tsh has been way worse before, up to ten at the worst (which is not as bad as many of you I know),its just crazy. Doctors in my experience really don't get how life limiting it is, or how hard it is to do anything feeling this bad. I have been trying to research ways to help on my lunch break, but my diet etc is already good so its a bit like, what else can I do! Especially when I now know what its like to feel healthy and happy... This forum is one of the main things that gets me through days like this so sincere thanks to everyone here x

lovelystuff · 17-10-2013 3:54pm

Amazingfun wrote: »

It's up to you, but people self treat for the very reasons you just outlined

Can I just ask, logistically how can I do this? Like my script only is for 75 a day and that brings me to December when apparently they will see me again. Its a clinic set up :-(

Amazingfun · 17-10-2013 6:04pm

lovelystuff wrote: »

Can I just ask, logistically how can I do this? Like my script only is for 75 a day and that brings me to December when apparently they will see me again. Its a clinic set up :-(

PM sent

Amazingfun · 17-10-2013 6:06pm

ttoppcat wrote: »

Hi guys, new to posting here but I've been reading this thread on and off for a good while now. I'm wondering if anyone can recommend a good GP in the Galway area in relation to thyroid issues. Thanks

Welcome, hope someone can assist

grellan1 · 20-10-2013 11:27am

_EimearNi_ wrote: »

I understand how you feel, I've been through the very same problem myself. I think we know ourselves when things are not going well. Its the depression that comes with this that makes it so bad on us as we put so much pressure on the right results. I've been a year and half at this and only now am starting to see big improvements in my results.
It had gotten so bad that I went and spoke with my doctor looking for a higher dose of eltroxin and he said that it wasn't bad enough. I got upset and cried and tried to explain to him what it is like living with this day to day and its not as easy as he would think. Eventually he did give me the higher dose and within two weeks I felt loads better, now I don't know if this is psychological or what but i do know I felt a lot better myself, and have continued to feel great on this dose.

I hope things all work out for you.[/QUOTE

I can really symphatise with you on this. My dosage was increased from 75mcg to 100mcg daily about 6 weeks ago. I phoned yesterday and asked well,what were the results/ranges and this is what I was told.

TSH 9.3 Range 0.27 - 4.5.
T4 20.2 Range 4.00 - 22.2

YIKES! so I really am truly hypo now? No wonder I have skin problems, palpitations (nearly blacking out at one stage), high blood pressure etc etc.

Have decided to insist that my TSH is lowered to below 3.0.
Can anyone give me some advice on this please, brain fog here, older lady who let things slide! Thanks.

Wyldwood · 20-10-2013 2:11pm

Grellan1 were these bloods taken recently i.e. after you had been on 100mcg for 6 weeks? I presume you are on Eltroxin. Did your gp suggest another small increase in dosage to see how you get on? The problem is that too high a dosage of Eltroxin can also cause nasty palps & high blood pressure. If you haven't discussed your symptoms with your gp I'd suggest you do so. If you haven't seen an endocrinologist it might be a good idea to ask for a referral. Many docs don't consider hypo a problem until TSH is over 10.

This thyroid business is highly individual. My TSH is almost the same as yours but my FT4 & FT3 are just within the lower end of range and I feel reasonably well most of the time. Most people wouldn't be able to get out of bed with those results. Recently I saw another specialist who told me ignore TSH & just look at FT4 & FT3 results and most importantly go by how I feel.

grellan1 · 20-10-2013 4:05pm

Hallo Wyldwood, thanks for reply so fast - blood taken in August with a further one to be taken in November, then dosage increased from 75mcg to 100mcg 6 weeks ago, after I went to dr. about very dry sore eyes and she increased dosage on hearing i was having an op the next week. Usually I would have been midrange TSH on 75mcg but looking back on things I have been kept on a low dosage for quite a while and that was when the palps, near blackouts were bad 2 years ago, cardiologist did tests and heart performing well in tests. I have been reading Mary Shamons website and there seems to be contention as to what the ideal range is. What dosage are you on now?

Wyldwood · 20-10-2013 10:34pm

I'm a very atypical thyroid sufferer. I was on 100mcg of Eltroxin for 30 years with no problems, after surgical removal of my gland in my teens, but about 3 years ago I developed an intolerance of the meds and went hyper with some very nasty side effects including palps, digestive problems & gritty eyes, also lost weight. Had to come off meds for a while to detox and can now only tolerate 12.5mcg daily.
Like you I've been to cardiologists and had heart checked out..all fine. I'm learning to live with the lower dose now as the alternative of hyper symptoms is definitely not nice.
Many people on here are doing well on Natural Thyroid supplements so maybe you should discuss this with your doc if he's willing to listen. Most medics won't entertain the idea unfortunately. My own endo refuses to prescribe anything with T3 in it for me as he says my cardiac symptoms would return.

Hope you get the help you need and start to feel better soon. You have to be your own advocate as a thyroid patient as it's a very poorly understood condition by the majority of doctors.

Rosie1983 · 21-10-2013 12:47am

Hi all. Do any of you have a reverse osmosis water filter in your home? I've been thinking about it again. I drink bottled water every day, usually Evian, as it's supposed to have less fluoride than other brands and I like the taste of it. But I still use tap water for cooking, tea and coffee etc I do have a brita filter jug but that doesn't remove fluoride so i wonder if having a proper filter installed would make a big difference?

_EimearNi_ · 21-10-2013 8:27am

I hope things all work out for you.[/QUOTE

I can really symphatise with you on this. My dosage was increased from 75mcg to 100mcg daily about 6 weeks ago. I phoned yesterday and asked well,what were the results/ranges and this is what I was told.

TSH 9.3 Range 0.27 - 4.5.
T4 20.2 Range 4.00 - 22.2

YIKES! so I really am truly hypo now? No wonder I have skin problems, palpitations (nearly blacking out at one stage), high blood pressure etc etc.

Have decided to insist that my TSH is lowered to below 3.0.
Can anyone give me some advice on this please, brain fog here, older lady who let things slide! Thanks.[/QUOTE]

Same, I hope you start feeling better soon. I think mine was so bad cause the TSH was >100 and it took me over a year to get it down to about 4/5 which is barely in the normal range. To be honest I think you know yourself how you feel with this, whether you are in the normal range or not. everybody reacts differently it would seems.
At hte moment the brain fog is becoming a huge problem for me. I was once a person who could study all day long and now I can't concentrate at all, and I certainly can't recall information I've learned correctly. I really don't think there is much we can do with this cause its so subjective at the best of times.

I was like you having my bloods done every six weeks for a year and a half and sometimes you put too much emphasis on the results. I know a lot of people on here would recommend a gluten free diet as well, and say that this has helped them a lot.

I don't think Doctors are great with this 'disease' for want of a better word. I mean I am taking iron tablets as well as the eltroxin and it wasn't until I went to the endo that I found that taking iron stops you abosrbing eltroxin, so if you are taking iron as well, try and take them at different times of the day.

Hope you start feeling a bit brighter soon I know the side effects are a killer!

grellan1 · 22-10-2013 4:36pm

Thanks Eimear,you have describe myself almost exactly at the moment. It took me a long time, after the RAI, to get down to a semi normal range. I am also taking calcium so start off day with Eltroxin and Lecalpin (b.pressure pill) 1/2hour before eating and then the calc 4hours later. Am on short break at the mo and its about 26c but am hardly breaking a sweat at all... I am going to change over to Eutirox (spanish brand, as left my eltroxin at home) . A book,my holiday reading - Your thyroid and how to keep it healthy - is helping to make things clearer and now realise I have been plagued with this since my puberty. My mother had multiple miscarriages and it's only now that I have found a link with this. Incredible as to how many illnesses can be ascribed to the thyroid. The brain fog can be so worrying and horrible not to be able to remember things easily, although sometimes that can be a blessing!

Wyldwood · 22-10-2013 6:45pm

Rosie1983, I have a flouride reduction system in my kitchen sink. It filters the water twice, firstly for chemicals and parasites & then through a second filter for the flouride. The water tastes much better from this tap.

I got it from Simply Water (www.simplywater.com) but I'm sure there are other companies out there doing filter systems.

lovelystuff · 22-10-2013 9:07pm

Just wanted to give an update here after my posts last week. Thanks to the support and encouragement I got from people here on this forum, I went to my gp today and insisted he upped my dose to 100 a day and he agreed! First time in ages I felt listened to, he was intrigued by my numbers as my free t4 is always grand no matter how sick I am (according to the endo its because I'm on the pill), so I even told him that the numbers can lie and he really took it on board.

If it hadn't been for people here I probably would have just waited til December feeling miserable,for my next scheduled appointment. Thank you :-)

grellan1 · 24-10-2013 4:09pm

lovelystuff wrote: »

Just wanted to give an update here after my posts last week. Thanks to the support and encouragement I got from people here on this forum, I went to my gp today and insisted he upped my dose to 100 a day and he agreed! First time in ages I felt listened to, he was intrigued by my numbers as my free t4 is always grand no matter how sick I am (according to the endo its because I'm on the pill), so I even told him that the numbers can lie and he really took it on board.

If it hadn't been for people here I probably would have just waited til December feeling miserable,for my next scheduled appointment. Thank you :-)

and Thank You Lovely Stuff for your posts on this, as it nudged me to do something about my own situation here.Great to know that the doctor listened to you.

cltt97 · 02-11-2013 2:43pm

Does anyone ever get pain in their fingerjoints? That's a new one here...

lovelystuff · 02-11-2013 2:59pm

cltt97 wrote: »

Does anyone ever get pain in their fingerjoints? That's a new one here...

I get that too, the last month or so it's been hard to hold a pen! One thing I found helpful is massage, there is a place on dame street if you are in Dublin, they are very good with specific medical issues and always look after me with thyroid and low blood pressure :-)

cltt97 · 02-11-2013 5:12pm

Thanks! I thought I've had it all at this stage, so I was starting to get worried about arthritis or rheumatism, since generally I've been doing reasonably well!

lovelystuff · 02-11-2013 5:28pm

http://www.sarahwilson.com.au/2010/11/my-remedy-kit-for-thyroidycrappy-days/

Not sure if I ever posted this before, but I find this blog post helpful if I'm having a bad thyroid day. She takes a really holistic approach which I like! Hope everyone is well, I'm still the same but early days on the new dose so I'm hopeful :-)

Amazingfun · 02-11-2013 9:40pm

Thanks for the link Lovelystuff, I am getting messages from the Universe LOUD N CLEAR this week, and it's basically saying : drop the coffee, drop the gluten, drop the ***** (insert various other bad habits here lol) so your link fits right in.

I am planning (haven't picked an official start day yet, January looks good, haha) to start something called the "Autoimmune Protocol" (*cries*), and start to work on 'healing the gut' as they say.

I don't want to, but I think I kinda have to if I want to keep moving in the right direction.

Anyone here done it/doing it? I've read an awful lot of testimony from thyroidy folks who seems to have had brilliant results with it.

I really really looooove coffee though. I hope it's one of those things I can add back in eventually.

lovelystuff · 02-11-2013 10:39pm

I'm planning the same thing actually, the autoimmune protocol looks so hardcore but I would do anything to get a bit more control over the symptoms. I'm planning on doing mine in Feb as that's when I'm moving in with the OH and will be doing all the cooking. I'm gonna get that whole 30 book for Christmas, I think its called 'it starts with food' to get ideas. Don't know how I'll survive without eggs, peppers or tomatoes though! Maybe a whole 30 first would help ease us in :-)

thyroid misery

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