thyroid misery

lovelystuff

cltt97 wrote: »

Well, hello there and welcome to the thread...



it is such a shame that so many GPs are still in the middle-ages when it comes to thyroid, I thought I'd heard it all, but above 10 is a new one yet!



Well, you probably need to up the dose, make sure you get a blood test, you should actually have had one every six weeks from starting the eltroxin. I hope you have changed GP since!

Thanks for your welcome and reply I think in a way I'm at the stage where I don't trust my body,because I spent so long being essentially told I was a faker!

From several different gps too. When I look back I'm actually pretty angry as I feel like a lot of my early twenties were wasted feeling terrible! I haven't been back to any gp lately as the endocrinologist is seeing me every 8 weeks,but I should also mention that the gp is always trying to lower my levothyroxine dose now (I sometimes get bloods done at gp and faxed to hospital endocrinologist if it suits my shifts in work better). Any time the gp sees my bloods he says I need to lower levothyroxine,even when my tsh is up. I honestly wonder what else is being missed by Drs who aren't up to date! I have an appointment in march wit the endocrinologist so hopefully will be sorted then.just feels never ending sometimes!

cltt97

I know the feeling. But don't let anyone tell you that you don't know how you're feeling. I remember sitting with this registrar for an hour being patronised and what not else, and a GP indulging me but all the time sending out the "it's all in your head" signals....
Just remember, your body, your health - they have no idea what it feels like, and if they don't provide the service you need, move on. Took me a while to find someone willing to work with me, key is not to give up and not to let anyone question your judgement about your own body!

lovelystuff

Thank you I think what I'm starting to realise is that this isn't just 'take a tablet every morning and you will be grand' as the endocrinologist said! He also told me that lifestyle or diet changes won't make any difference,does anyone have any experience of lifestyle changes that helped? All the tips say exercise but it exhausts.me for days after when I do or any alternative therapies either? I'm skeptical but willing to do anything to feel better

Orla K

lovelystuff wrote: »

Thank you I think what I'm starting to realise is that this isn't just 'take a tablet every morning and you will be grand' as the endocrinologist said! He also told me that lifestyle or diet changes won't make any difference,does anyone have any experience of lifestyle changes that helped? All the tips say exercise but it exhausts.me for days after when I do or any alternative therapies either? I'm skeptical but willing to do anything to feel better

With exercise I've always found weights better, it gives you a good workout and you don't move too much you also get rests between each set. It also helps you burn calories for longer, with cardio it stops as soon as you stop but weights it go's on for hours after. Also if your female you will not get bulky, it takes a lot of testosterone to do that and even if you were a man with enough of it, it's a very hard thing to do and takes years. Lift between 8-10rep ranges, it's pointless going higher, you could also go lower if you wanted.

I did a post a few pages back of some of the stuff I do, that helps. I did get my test results looking better I wasn't on any meds at the time. I also lost some weight during this time.

FlipperThePriest

lovelystuff wrote: »

I'm at the stage where I don't trust my body,because I spent so long being essentially told I was a faker!

I reckon that trusting your body is the best thing you can do, and in fact the GPs are probably fakers as they don't fully understand what they are talking about. I've had underactive thyroid for over a year diagnosed now, maybe more than 2 or even 3 in total though, and like yourself, I'm doing a PhD and working part-time in a bar late nights at the weekend. So stress and awkward sleep pattern shifts have been at the fore for a while. It was difficult to initially establish the symptoms and come to the conclusion something was a miss because of the natural stress I was putting myself under due to balancing work, study and sleep changes.. but I finally figured something wasn't right. When I finally did get blood checked my tsh was up in 50s or 60s. It took about 6 months after first diagnosis to balance tsh.

But always I've had to bicker with my gp to let him know I wasn't going to be brushed aside, and to be honest - internet and forums like this has helped me to understand that trusting my body is probably pretty important. I don't often post here but I often scan down through the pages to see what others are going through.

Before Christmas I was beginning to feel sh*t again so said I'd get the blood done.. Rang back weeks later to get results.. secretary told me, 'ring back in an hour and I'll have results for you'. So I did, to which I was told.. 'yes everything's fine'. I asked could I have my results for my records and she said 'oh yes, just hold on please' So she asked what exactly I'm looking for.. I said firstly tsh levels and she gave me 16.99.. I said that's not exactly fine, at which point my doc came on the phone (he'd obviously been listening in) and said they're a little bit haywire. He was obviously willing to just fob me off because he didn't know what to do with my dose, and had I not looked online and did a little research I would probably just be left to get worse, not knowing any different. He didn't even suggest a follow up to the endocrinologist... I had to suggest it to him?! So I was at the endo yesterday and had my dose increased, and I'll be going back in 3 months.

I don't get it with the GP really, but I'm not going to let him brush me aside.

My dose of eltroxin started at 50mg a day after first diagnosis, shortly up to 100mg, then 100mg a day except one day a week 200mg.... now I'm on 200mg 3 times a week and 100mg 4 times (alternating doses).

In the last month or 2 while waiting to have my dose increased I've started taking a brazil nut a day and thought I found it helped a bit. My 2 biggest indicators that something's not right is I eat like a horse.. maybe 5 meals a day (and I'm skinny as a rake) and I can't warm up no matter what, since starting brazil nuts I don't think I've been eating near as much.

lovelystuff

I'm really glad I found this thread,its so reassuring to see people in The same boat as me,none of my friends are dealing with anything like this so it can be hard! Don't get much sympathy when I need to go home early from nights out etc!

cltt97

Brazil nuts are full of selenium, which is needed t convert T4 to T3, it also dampens the inflammatory process, so most people feel it helps them. Most of us are also Vit D deficient. And have low iron.

I know what it feels like having healthy friends! they can go on forever and you feel like you're about 50 years old! It's hard to imagine pain or illness, so it's not their fault, so don't let them upset you with their inadvertent ignorance... I don't know how many times someone wanted to give me dietary advice or suggest I should join weight watchers to get off the 2.5 stone I gained - I wanted to throttle them, but at some stage those things just bounce off you, you just need to be happy with your own progress and be patient and be kind to yourself.

Re exercise - I couldn't even run after a bus when I was at my worst, I thought the engine is going to stop any minute now! Now I feel fine and I can do pretty much anything I want and I feel the more I do it, the more I want to do. But for me it was a very long road with intolerance to eltroxin/T4 and weak adrenal glands etc.... took me 3 years and it was not fun, but I got there in the end. I think most people that end up on threads like these are the ones that don't react according to standard operating procedures, sure why else would you go looking on the internet if you were grand. In any case, lots of people here have good GPs and good endocrinologists, so if you need recommendations, let us know where you are based and people can PM you with their recommendations.

Wyldwood

Welcome to the thread lovelystuff. Sorry to hear that you are going through the wars with your thyroid.

I think the biggest problem most thyroid sufferers have is finding a doctor, either gp or endo, who will work with them and treat symptoms rather than TSH/T4.

I was stable on 100mcgs Eltroxin for 30 years after a thyroidectomy as a teen. 2 years ago I became intolerant to the meds. Since then I have been doing battle to tolerate even the smallest amout of levo. I have a reasonably sympathetic gp & endo but even so I'm still getting treated on blood results. My TSH is 7.8 & T3 & T4 on the low side. My gp told me recently that she wouldn't give me any medication if I walked in off the street with those blood results, she doesn't medicate until TSH is 10! My endo, who has a very good reputation, feels if T4 & T3 are in range, albeit just so, then all's well. Nobody can tell me why this has happened to me.

I'm a firm believer in exercise. I feel 100 times better on the days when I go for a walk. Lovelystuff could you go for a swim or even try an exercise bike? I think getting the metabolism up working early in the day seems to make a difference. Also be careful with soy products as they interfere with thyroxine absorption. The recommended way to take the meds is first thing in the morning at least a half hour before food but my endo told me this doesn't make a huge difference & the more important thing is to be consistent in the way you take it. Also suggested taking it at night as it gets absorbed better overnight. I found that I couldn't sleep when I took it at night but that might just be me.

If you are starting to feel unwell again you could try to bring your appointment with endo forward. Hope you start to feel better soon.

lovelystuff

Thanks so much for all the support and wisdom guys its funny,when I was feeling grand I thought I had gotten away with just taking a tablet every morning then just getting on with life! In a way It's probably a good thing I'm having a bad few weeks,I need to learn to make allowances for myself and try and deal with this more holistically. I went for a walk today,was very tough but I did feel better afterwards! I'm lucky with my weight,even with the stone I put on I'm a size ten-twelve which I'm happy enough with. It's more about energy for me at this point It's great not to feel alone here,thank you

Amazingfun

http://www.carahealth.com/healthy-water/gravity-water-filtersr/portable-water-filters.html

How do people here feel about Dublin tap water?

Is it worth it to invest in a flouride removal filter? Or would it just be more of a dressing, as I know we still shower in regular water, etc. I want to do what's best for my hypothyroid condition, but not sure if this is worth it.

Appreciate any input.

dura01

Hi All

Thank God I found this post.
I was diagnosed to with secondary hypothroidism as a result of pan hypopituityism due to a genetic gene mutation. It endo say that I have had this since I was a teenager which makes sense as I have always struggled with my weight and have never had a lot of energy and things seemed to get worse each year, I am now 44 it was by pure fluke that they actually found out what I had , I had asked the nurse if she would do a testostrone test and it came back a abnormaly low , so gp to a friend of hers that had and done some work on this issue and was advised that I needed testostrone replacement therapy , so started treatment and it had no affect after the third injection and was advised that I may have a begin tumor on the pituitary gland and was refered to a great endo in the Bons Tralee who advised that he did not think it was a tumor but hypopituityism which causes hypothroidism, I have been on incresing doses of eltroxin 100mg per day for the last couple of months to no affect and I was with the Endo yesterday and he has put me 150mg as my throid levels are still low at 13.7 and he would like to see them up around 20,
I have a fews question that I need some answer to from fellow sufferers , I will I know that the eltroxin is starting to kick in and work I have never felt normal
My weight has gone to an alltime high of 117 kg and it not from overeating I joined weight watchers and struggled to eat all that they suggested and put on 3.5 kilo in the first week following their eating plan ,I need help with diet and exercise ideas to get the weight off asap ,

I would be really greatful for any advised given
Is there a support group in the Limerick area

cyning

Dura01 we have the same endo and he is great I agree!

Any changes in Eltroxin always take awhile to kick in for me. I always find that for at least a fortnight after any changes sometimes longer I feel worse instead of better: and my levels can be a pain in the neck to control too so they do change frequently.

Until your levels even out you might find that it might be difficult to lose weight: I certainly do! I find once I start exercising the first few weeks I will feel dreadful: but after that the improvements are great. I've been back fast walking (pushing a buggy!) and dancing for the last few weeks and I really do feel so much better. It's hard when you're so tired but it is so worth it after the exhaustion of the first couple of weeks.

I don't know of any support groups but this thread is great

dura01

cyning wrote: »

Dura01 we have the same endo and he is great I agree!

Any changes in Eltroxin always take awhile to kick in for me. I always find that for at least a fortnight after any changes sometimes longer I feel worse instead of better: and my levels can be a pain in the neck to control too so they do change frequently.

Until your levels even out you might find that it might be difficult to lose weight: I certainly do! I find once I start exercising the first few weeks I will feel dreadful: but after that the improvements are great. I've been back fast walking (pushing a buggy!) and dancing for the last few weeks and I really do feel so much better. It's hard when you're so tired but it is so worth it after the exhaustion of the first couple of weeks.

I don't know of any support groups but this thread is great

The endo is good alright and very down to earth thank God ,
On lots of other med Steriods cortisol, 2 types of anti depressents valdoxan and seroxat, cresator, and now blood pressure tabs, Endo says that we will get me feeling betters in the next few month just need to get the throid levels right, but very tired all the time and feel useless,If I have a good day I tend to overdo things and exhausted for 2 days afterwards

lovelystuff

Hi guys,I had another question if that's ok! I was wondering if anyone had any experience of going to a dieticien? I know there is lots of helpful info on this thread,I just think it might be useful for me to get a personalized plan. I don't need to lose weight,but thyroid plus ibs are quite the pain! I found one who lists hypothyroid on her website so I'd love to hear any thoughts thanks everyone

dura01

I have always struggled with weight issue from and early age and now at 44 I weight in @ 117.5 kg
And feel exhausted all the time and fuzzy head can.t think straight, My endo has upped my dose of Elthroxin from 100mg to 150mg per day
I would be greatful for any advise you can give on life style changes needed to kick start a better healther life

cyning

Lovelystuff I've never been to a dietician but I do find eating better helps so I'd say go for it and let us know how you get on

Saying that I'm way way too fond of my diet coke I really should give it up. It's probably not helping!

Boronia

Any alternatives?

I've been diagnosed with hyperthyroidism and I have found acupuncture, vitamin D, and a product called Revive Active Q10 have helped my energy levels. I still have tired spells but also get energy spells too.

My accute phase has only been for 2 months but I hadn't felt right for ages before that...really about 4 or 5 years since I was off work for 6 weeks with a virus of some sort.

Elba101

Hey all,

I'm new to this thread, but got diagnosed with an overactive thyroid about a year a half ago. I live in a foreign country (which I was new to when I got diagnosed) so there's always been a bit of a langage barrier. Anyway, popped me on some tablets, got tests every month and he lowered the dosage accordingly. Couldn't believe how much better I felt...mainly my energy.

I recently moved (same country diff GP much better English) and after doing a blood test my TSH level came out at 0.01 so she took me off my tabelts of 100mg per day.

Has anyone else come off thyroid tablets? Any side effects? I've been reading that you should never come off tablets, but with my TSH levels so low I'm trusting the doctor. I've got an appointent for a blood test in 2 months.

Any advice or experiences would be appreciated.

Orla K

Elba101 wrote: »

Hey all,

I'm new to this thread, but got diagnosed with an overactive thyroid about a year a half ago. I live in a foreign country (which I was new to when I got diagnosed) so there's always been a bit of a langage barrier. Anyway, popped me on some tablets, got tests every month and he lowered the dosage accordingly. Couldn't believe how much better I felt...mainly my energy.

I recently moved (same country diff GP much better English) and after doing a blood test my TSH level came out at 0.01 so she took me off my tabelts of 100mg per day.

Has anyone else come off thyroid tablets? Any side effects? I've been reading that you should never come off tablets, but with my TSH levels so low I'm trusting the doctor. I've got an appointent for a blood test in 2 months.

Any advice or experiences would be appreciated.

Have you an overactive thyroid(has a low TSH) or underactive thyroid(has a high TSH)?

cyning

Elba101 wrote: »

Hey all,

I'm new to this thread, but got diagnosed with an overactive thyroid about a year a half ago. I live in a foreign country (which I was new to when I got diagnosed) so there's always been a bit of a langage barrier. Anyway, popped me on some tablets, got tests every month and he lowered the dosage accordingly. Couldn't believe how much better I felt...mainly my energy.

I recently moved (same country diff GP much better English) and after doing a blood test my TSH level came out at 0.01 so she took me off my tabelts of 100mg per day.

Has anyone else come off thyroid tablets? Any side effects? I've been reading that you should never come off tablets, but with my TSH levels so low I'm trusting the doctor. I've got an appointent for a blood test in 2 months.

Any advice or experiences would be appreciated.

Hiya... I had an over active thyroid (graves disease) and came off my tablets on dr orders too. 8 years ago mad I'm getting old! The thing with thyroid inhibitors is they aren't recommended long term and secondly no idea if your male/female young or old but that can't be used in pregnancy! You need to be monitored very closely to make sure you don't go over active again, and if you feel palpitations etc go straight back to the doc. At the time I was told that some people can go through a transient phase of hyperthyroidism so I really hope that is the case for you.

The reason they tell you not to come off them (except under doc orders obviously) is because it can trigger a thyroid storm.

If its not transient I'm sure they will put you back on your tablets or look at the other alternatives for you. It's not nice I would deal with an under active thyroid ten times over than an over active.

Elba101

cyning wrote: »

Hiya... I had an over active thyroid (graves disease) and came off my tablets on dr orders too. 8 years ago mad I'm getting old! The thing with thyroid inhibitors is they aren't recommended long term and secondly no idea if your male/female young or old but that can't be used in pregnancy! You need to be monitored very closely to make sure you don't go over active again, and if you feel palpitations etc go straight back to the doc. At the time I was told that some people can go through a transient phase of hyperthyroidism so I really hope that is the case for you.

The reason they tell you not to come off them (except under doc orders obviously) is because it can trigger a thyroid storm.

If its not transient I'm sure they will put you back on your tablets or look at the other alternatives for you. It's not nice I would deal with an under active thyroid ten times over than an over active.

Thanks for the replies. I'm female, late 20s, generally good health with no baby on the way. It's overactive. There have been times when I forgot to take my tablets (maybe 2/3 days at a time) and I never really felt a difference. Just took them again when I realised. The 2 days after coming off my tablets (Sunday and Monday) I felt anxious all day... really bad and had 2 small panic attacks. I didn't even think to link it to my thyroid as I'm going through a stressful time at the mo and have had anxiety before (while on tablets) when I am really stressed.

Today was much better because I've recognised that it might have something to do with coming off my tabelts, but I'm also worried it has something to do with coming off my tablets....if that makes sense?! I can't get to a doctor until Saturday, but if it continues I intend to go and get a blood test done.

Did you have anything like this happen when you came off yours?

cyning

Elba101 wrote: »

Thanks for the replies. I'm female, late 20s, generally good health with no baby on the way. It's overactive. There have been times when I forgot to take my tablets (maybe 2/3 days at a time) and I never really felt a difference. Just took them again when I realised. The 2 days after coming off my tablets (Sunday and Monday) I felt anxious all day... really bad and had 2 small panic attacks. I didn't even think to link it to my thyroid as I'm going through a stressful time at the mo and have had some anxiety before (while on tablets) when I am really stressed.

Today was much better because I've recognised that it might have something to do with coming off my tabelts, but I'm also worried it has something to do with coming off my tablets....if that makes sense?! I can't get to a doctor until Saturday, but if it continues I intend to go and get a blood test done.

Did you have anything this happen when you came off yours?

For that reason alone they probably wont leave you on the tablets indefinitely- they arent safe in pregnancy even ig your not intending on having any time soon!

I have had serious panic attacks related to my thyroid levels they are really scary. Alot of it can be to do with a higher heart rate and that coupled with the anxiety and the general hyperness i experience with an overactive thyroid.
I would definately head back to the doc.
do tell them you occasionally forget your tablets aswel- were all human it happens! it maybe that you just need to go back on a lower dose of the tablets rather than come off them altogether?

lovelystuff

Quick question,I forgot to take my eltroxin this morning for the first time ever,should I take it now or leave it til tomorrow?thanks a million

Wyldwood

lovelystuff, missing one tablet won't make much difference because the thyroxine accumulates in your system, so just start again tomorrow.

Gemini123

Hi, I just wondered how people manage hypothyroid with their doctor. I was diagnosed last July with hypothyroidism and I'm on 100mg of Eltroxin. After starting on Eltroxin it took a while to feel any affects which I had been advised about. I had to push my doctor last October for a blood test which said my TSH was "normal". In July my TSH level was 10.340 and Free Thyroxine 13.2. The October test TSH was 1.920 and they didn't give me any other levels even though I asked them to test for them. In the last month or so my hands get pins and needles at night and my wrist and lower arms ache which means I wake up every night several times. I have told my doctor but they said my levels are normal even though they haven't repeated my blood test. I'm not as tired as before taking Eltroxin but still lack energy. I am thinking of changing doctors. What is the experience of others? Am I being neurotic?

cltt97

No, not neurotic at all. If you read through this thread you will see that an awful lot of people have difficulties finding doctors that will look beyond TSH. You know your body best, you know there is something not right. Don't let anyone convince you otherwise or let them make you doubt yourself. Thyroid problems appear to by a highly individual thing and you can never compare one person's experience to another. I had awful wrist problems myself in the early stages - haven't had any now in years. It's a very common symptom, whether it means you need more Eltroxin or whether it's a reaction of the body to finally getting some is hard to know. But in any case, it sounds like you're not getting the service from your GP you're entitled to, so I would suggest you switch, or ask for a referral to an endocrinologist.

Gemini123

Thanks for that, I do feel I need to change doctors but you know when you go sometimes you think you're making a fuss about nothing. Especially when my levels aren't as low as some sufferers. I also have a uterine fibroid which is a hormonal thing too which I'm sure is all interelated. I've got to the age (47) when the body starts to crack up! If not the mind!! LOL

Orla K

300 hypothyroid symptoms

I tried counting the ones I had at my worst, I lost count.

Gemini123

I just read your link Orla K, yeah I've experienced a good few of those symptoms too....depressing or what? Hopefully if you know you have a thyroid problem these symptoms diminish when treated, but terrible for those who don't know about it. You fear the worst is happening to you. I was so relieved when I found out I was hypo, it explained so much. It was like a huge weight being lifted and I wasn't going mad, even though I'm still adjusting to it all.

robinph

Orla K wrote: »

300 hypothyroid symptoms

I tried counting the ones I had at my worst, I lost count.

Lot of duplicate entries in there to make the list longer and just writing things in different ways for the same thing.