thyroid misery

Rosie1983

lovelystuff wrote: »

Hi all, I have been doing well for a while but woke up today feeling like I have been run over, I'm so tired and achey. Definitely a thyroid day! Does anybody have any tips for how to get through the day (I have work today)when feeling like this? Thanks

Hi lovelystuff

I think we all have days like that, some worse than others. I don't think there's much you can do except try and listen to your body and take it easy if possible. Go to be early or take a nap later if you can. Your body is probably telling you it needs extra rest. And maybe try and drink extra water?

I'm having lots of trouble getting my Erfa prescription in and have run out as of yesterday. Don't know if it was the power of suggestion but I did feel really tired yesterday and so decided not to go running.

The only other advice I have if you're tired is maybe treat yourself and have a cake or an extra coffee? And of course eat well, lots of healthy food to keep you going. If ever there's a day you deserve it, it's when you wake up boned tired for no apparent reason! I think we've all been there

cltt97

Rosie, if you're dead stuck I could give you a "lend" of a few?

lovelystuff

Thank you for the support, its great to have somewhere to come for advice! I'm hoping it will pass soon, I haven't been this bad since February so its always tough.

cltt97

Lovelystuff, I definitely get these kind of days, sometimes it's just one day, sometimes it's a couple. I usually pop some iron supplements at night then, and some extra vitamins.

lovelystuff

Thank you. I managed to leave work an hour early so going to bed for a while. I have been pushing it recently so its probably a sign to slow down :-)

Rosie1983

cltt97 wrote: »

Rosie, if you're dead stuck I could give you a "lend" of a few?

Thanks for very kind offer but I should be ok. After several phone calls today and yesterday my GP agreed to prescribe Armour and sent the prescription to the chemist, who should get it in tomorrow. That will hopefully keep me going til the Erfa becomes available again, which might take til the end of the month!

Rosie1983

In other news my running is still going well and has definitely helped my mood and energy levels! If any of you want to give it a go, I can give you the name of the running group I joined for 8 weeks to start. It was a brilliant way of learning to run properly and by week 8 you're guaranteed to be able to run for 30 mins straight! I can't recommend it enough. And I was so out of shape and tired when I started. It's amazing how quickly it makes a difference to your energy levels.

rojaels

hi all, how do u know if go hyperthyroid, on 150mg eltroxin jan 2013 and gp says to reduce dose to 100mg, awful symptoms aches and pains, tired,
TSH 1.81 range 0.27-4.20
f T 4 19.7 range 10.5-22.0
then still feeling unwell and went hypo. ft4 12.4 and tsh 35.2.
increased to 150 of eltroxin and results now free t4 24.1 and tsh 2.16, gp says im hyperthyroid and now to reduce 125mg eltroxin. any advice please as i feel i will never feel better. he wont test for free t3 as he says its pointless, seen endo in galway hosp and she only interested in my levels and not how i was feelin. sorry now to rant on but really desperate,

Amazingfun

rojaels wrote: »

hi all, how do u know if go hyperthyroid, on 150mg eltroxin jan 2013 and gp says to reduce dose to 100mg, awful symptoms aches and pains, tired,
TSH 1.81 range 0.27-4.20
f T 4 19.7 range 10.5-22.0
then still feeling unwell and went hypo. ft4 12.4 and tsh 35.2.
increased to 150 of eltroxin and results now free t4 24.1 and tsh 2.16, gp says im hyperthyroid and now to reduce 125mg eltroxin. any advice please as i feel i will never feel better. he wont test for free t3 as he says its pointless, seen endo in galway hosp and she only interested in my levels and not how i was feelin. sorry now to rant on but really desperate,

I know how "desperate" feels, believe me, so I am sorry to hear where you are at.

If I were you I would look into this yourself, ala, check out the 'Stop the Thyroid Madness' site, and Thyroid UK. I didn't do well on T4 only meds, I am now on Thyroid-S and am feeling much better. Only problem is my weight is still HIGH, haven't lost a pound, but I am working on that by getting my Iron levels corrected (I think I have an adrenals challenge too). I am still finding my way.

Patience is the game here, but we have to accept that many, many Gp's just haven't a clue when it comes to us. Only way out is to make yourself as much of an expert as you can, and then listen to those who have been successful in getting better. Sadly, many I hear about have done so in spite of their GP!

http://www.stopthethyroidmadness.com/things-we-have-learned/

http://www.thyroiduk.org.uk/tuk/index.html

Also, there is a Dr. who works between Dublin and London I have heard good things about, but he is not cheap. I am planning to make an appt when I have the funds, but maybe that's not an issue for you.

https://www.facebook.com/notes/ftpo-ukeurope-for-thyroid-patients-only/doctors-in-ireland/199614486881985


Most of all, do not give up hope. So many of us have been saddled with substandard treatment and medicines. You are not alone.

rojaels

thanks for replying amazingfun. ya its difficult, bought the book and have got loads of tips from it and this thread, but find it very difficult if doctors and endo expect one to be ok when tsh and t4 are ok, am on eltroxin for over a year but feel every day im gettin worse.

Amazingfun

rojaels wrote: »

thanks for replying amazingfun. ya its difficult, bought the book and have got loads of tips from it and this thread, but find it very difficult if doctors and endo expect one to be ok when tsh and t4 are ok, am on eltroxin for over a year but feel every day im gettin worse.

Then you must know that you may not be converting the T4 to T3?
Eltroxin just may not be working for you, especially if you feel so bad. Some people opt for adding T3 to the T4 instead of moving to Natural Desiccated Thyroid, but I think it all depends on how where you are and what you can get your hands on. I can give you the details on where I get mine if you pm me.

I also have to return to my GP this week as the bloods I had done recently contained NO results for T3, Ft3 or Rt3, which is useless for us. He did run all kinds of tests I didn't really need and didn't ask for (which is frustrating). But I am going to ask specifically and see how we go. Just can't give up. I am on three grains now, and I feel quite good, but I really need to see how these t3 levels are before I make any more changes in dosages, etc. My ferritin was really low, and so I have been supplementing with Iron daily now and I do feel a bit of a lift.
Low Iron and Cortisol issues can affect how the NDT works so I am hopeful this will help my other challenges.

We are all like chemistry experiments, lol, have to keep tweaking the ingredients! You can get a lot of help from the STTM Facebook groups too, on how and where to access good products, Gps, etc. It's not easy at all, I see many people struggling, unfortunately. It's been just over a year since I was diagnosed, after many years untreated before that, and I am still learning.

rojaels

thats what i find difficult is finding out info about thyroid but gps just dont listen, how do u test for not converting t4 to t3, im in galway, gp keeps sayin that no other treatment available, just hoping that one of these days i will feel better,, thanks amazinfun

Staplor

You need to know your stuff going to a GP, if the doc doesn't listen then change.

Don't accept that there isn't a problem, one school of thought is to go by blood, the other by symptoms. Blood work is the average for everybody, not what you need.

I had to move doctor, the new guy wasn't happy with me on NDT, when he heard I was on a massive amount of Eltroxin with no real change he started to come around to NDT, especially as Armour is unlicensed in Ireland. He didn't want to prescribe it, as it was unlicensed, I told him it was unlicensed not illegal and I was getting it in a pharmacy not over the net. He's coming around though, and slowly getting better.

cyning

There is no test to test conversion of T4 to T3. My endo treated me symptomatically: also despite being on Eltroxin 500mg a day my TSH would hover around 30 and my t4 stuck at 9. I have peripheral resistance to T4.

I normally take T3 on its own.

At the moment I'm just on eltroxin: I'm a bit haywire at the moment. Interestingly (well I think!) the placenta seems to be doing the job my thyroid doesn't and is shooting thyroid hormones out into my body. I went over active especially my T3 it was almost triple what it should be, so had to come off it for a month anyway. We shall see what the bloods show next week

rojaels

hi cying, do u mind if i ask what kinda symptoms do u get with overactive, had decrease in eltroxin 150 down 125mg as gp says my free t4 is high,

cyning

rojaels wrote: »

hi cying, do u mind if i ask what kinda symptoms do u get with overactive, had decrease in eltroxin 150 down 125mg as gp says my free t4 is high,

Palpitations, sweating, tremors and anxiety would normally happen. Massive weight gain normally too because my appetite goes through the roof: as I always moan about that one I couldn't get the weight loss!

Symptoms can differ from one person to the next though. This time I'm getting really breathless with the palpitations which is new. Endo is great I'd say he's sick of the sight of me right now though

lovelystuff

With the risk of sounding like a total moan/hypochondriac, does anyone else get sore joints? I can barely text or hold a pen today its very weird. There is arthritis is the family but I'm only late 20s...I tend to blame everything on the gip thyroid anyway!

rojaels

thanks cyning. had anxiety and weight loss but no change in blood results, very fustrating this thyroid business, u seem to hav a good endo who listens to u..

inocybe

lovelystuff wrote: »

With the risk of sounding like a total moan/hypochondriac, does anyone else get sore joints? I can barely text or hold a pen today its very weird. There is arthritis is the family but I'm only late 20s...I tend to blame everything on the gip thyroid anyway!

I'm having terrible trouble with joint pain, especially hands. I'm taking Neomercazole and joint pain is listed as a side effect, but endo says 'no'

lovelystuff

inocybe wrote: »

I'm having terrible trouble with joint pain, especially hands. I'm taking Neomercazole and joint pain is listed as a side effect, but endo says 'no'

Thanks for the reply, its so uncomfortable! I can't figure out what I can do to help,like would a massage get things feeling better again....such a pain! Glad I'm not alone though :-)

cltt97

I used to get terrible repetitive strain injury in my wrists, going up into my arms. Very rarely I would also get pain on the inside of my left ankle. I would have to wear wrist support (there are good ones with metal in them that really keeps your wrist still) and apply all sorts of anti-inflammatory creams and what not else. Massage definitely helps, but quite often I would get it in both hands, so there wasn't much hope for self-massage! Often I found that rolling the upper arm on a tennis ball, especially the backside just under your armpit gave relief, as those muscles tend to seize up there. For me, I know it's definitely thyroid related. Together with sticky dry eyes it is an indicator for me that things are not good in the thyroid household.
I read somewhere that it was related to the lymph not being transported as effectively as it should and build up in the joints causes the pain - but I can't remember where I read it and if it's sound information, so don't take this as a given!

lovelystuff

Good to know its not just me and I'm not crazy! Its weird how up and down is. I'm paleo now and try and go walking most days and get lots of sleep but nothing really seems to help when I can just wake up one day and feel back.to square 1...I wonder will it ever settle down or will I ever figure out a self care plan to feel better!

Amazingfun

inocybe wrote: »

I'm having terrible trouble with joint pain, especially hands. I'm taking Neomercazole and joint pain is listed as a side effect, but endo says 'no'

Joint pain and weight gain were probably my worst symptoms before diagnosis. I developed a love affair with Nurofen plus for many years as a result, never realizing there was a legit reason for my taking it so often; I felt a lot of guilt about it at the time. It was damn expensive too!

For me , the thyroid replacement has alleviated that almost completely, the urge to take them literally lifted within a month of my taking Eltroxin even, and the only time I've had to take any pain meds now is at the 'time of the month' when that particular symptom seems to return with a vengeance.
But Nurofen Plus always works for me when it comes to aches n pains.

lovelystuff

I don't remember my joints being this bad before, I'm nearly 18 months on eltroxin, but then again the old brain fog may be making me forget! I'm not due back at the consultant til.mid December, its the clinic in Vincent's, anyone know can I go back earlier? I was going every month then every 3 months then last time they put me to every 6 months, perhaps too soon! Thanks again for all the advice

Orla K

I notice joint pain too. I can always tell how good or bad my thyroid is from the pain, most notably in my wrist I injured it last year and it hasn't quite healed 100% yet it'll get better and be almost better but then my thyroid will go down hill and it'll be sore again.

Another thing I've noticed is I broke my finger in june/july and I ended up having to go to the hospital over it. They x-rayed it in september thinking it would be completely healed (fingers are quicker to heal than other bones) but the guy was a bit surprised that it was still broken. My body seems to be slow at healing

lovelystuff

Got bloods done this morning so fingers crossed they will up my dose. If not then I have some crazy virus but I don't remember feeling this bad in ages!

rojaels

hi all. painful joints, weak leg and arms, for last 10 months, do it ever get better. has anyone been to endocrinologist in ballinasloe, awaiting referral, is it worth waiting, or will i be told im fine...

Rosie1983

Hi all. I should really be fast asleep at this hour, but I'm a terrible night owl. Maybe that's why I'm so tired since last week. My stupid chemist messed up my Erfa prescription at the beginning of last week and I ran out. My Endo is only in his clinic on Wednesdays and my GP wouldn't send the chemist a prescription for Armour to keep me going, because she's never heard of it and she didn't know what dose to prescribe me, and she "didn't want to poison me as she could get sued"!!

After nearly a week of me calling everyone multiple times, she finally agreed to fax them a prescription after talking to my Endo, but she got the amount wrong and instead of covering me for 2 weeks it'll only cover me for one week as I take two tablets a day.

Anyway my endo has since sent me another prescription for Armour which will hopefully last me til the end of the month when the Erfa is due back in. But with all the mess ups last week I ran out of Erfa for two days, and since then I'm on Armour. I'm feeling really really tired since Friday and I'm wondering if missing pills last week is the reason or if Armour isn't kicking in as fast as Erfa. Went running 4+ km three times last week including yesterday but still feeling so physically tired. Can't seem to shake it. Hope it doesn't last or I'll be going back for another blood test soon to check my levels. Not due to go back til December...

cltt97

Hi Rosie,

I'd say missing the tablets a couple of days and switching will definitely have an effect. A lot of people that used to take Armour find that it is not as good anymore since they changed the formulation (the types of fillers used) and have since switched to Erfa, so you might be picking that up, too. In any case, I would not really take any of what happens too seriously until you're back on Erfa and your usual regime. Maybe you should take it a bit easy on the runnnig, too, since you're running on "reduced" energy at the moment, never mind the stress all the pill drama has caused!

Orla K

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)