thyroid misery

cltt97

@bridgy67

Poor you, you really have it all going on there... your very fast moving TSH is unusual - have you been on a constant dose of Eltroxin and for how long? Also, do you have Hashimotos and were you ever tested to see if you have Graves antibodies as well? Or have you ever had a scan to see if there are nodules or anything in your gland? Don't want to worry you, just very odd how much your TSH fluctuates - unless you do what some people on this board have said, that they take their meds on and off or forget to take it for weeks...
Re the mood swings, I did notice that I got very stressed and agitated easily, that things would get to me more than usual (like permanent PMS :-)), this went away quite quickly when I started adding a low dose regime of Hydrocortisone to my mix. Also, as LimerickBishop has said, food is very important, as is a somewhat regular sleeping rhythm. Try to go asleep before 11, get at least 8-9 hours sleep. Take eltroxin at the same time every day. If you read through some of the previous posts, there is a whole rigmarole of tests one should get to see what is going on. These hormones and a lot of other substances work like an orchestra - if one is out of tune the music is c***.

dollydishmop

@bridgy67

I hear ya! My levels used to swing wildly, from one month to another. I have (had?) Grave's Disease.

My Endo was at his wit's end trying to get my levels to stabiise. Even the minutest dose change would send it spirralling up or down. For additional reasons I was scheduled for a Total Thyroidectomy (TT), but the surgeon wouldn't do it until my levels were under some vague semblence of control...which was all but impossible. In the two months prior to my surgery, I was being tested every 10-14 days.

Since my TT my levels have settled, and all is (mostly) good, great even!

The mood swings, hard though they can be to bear, are sadly all part of it for many of us. My hubby was a absolute saint for putting up with me at my worst. I could turn into a a totally psychotic bitch-monster at times, totally out of the blue, with no warning (to either of us!)....and could pull a full-scale row out of thin air over absolutely nothing! Even though I knew just how irrational I was being I just couldn't stop it....its horrible & its highly distressing to feel SO out of control. And you really do need a partner who is a complete saint to put up with it, and continue being supportive. Once my husband could accept it wasn't a personal attack, and it wasn't *me* it was my illlness, life became less comabtive all-round. When I was in full psycho-bitch mood....he'd just go out and work on a vehicle, or take the dogs out for a walk....of course, when in the mood and revved up for a good argument that would just wind me up even more, but 99 times out of 100 I'd be totally over it and completely calmed down, back in happy-mode, by the time he came back in. Clever fella!
The only things thatsorted out my horrific rages was getting my levels stable...which is no consolation to you right now, with your levels fluctuating, but I really hope they settle soon.

Are you seeing an Endo at all, or is it just you and your GP dealing with this?

newrunner

Hi everyone,
I was recently diagnosed with an underactive thyroid, after about a year of symptoms (exhaustion, weight gain, thinning hair, dry skin, goitre etc).

Ive been reading previous threads which have been so helpful! I have been started on 50mg of Eltroxin a day. I feel absolutely terrible at the minute, completely exhausted and wanting to sleep 14 hrs a day plus naps (not possible with busy college and job). I'm just wondering if there is anything i can do to make myself feel a bit better til the tablets kick in?

I havent been able to run for months as too exhausted, but im willing to try anything! Also the side effects for Eltroxin arent great, tummy etc, I'd really appreciate anyones experience or advice?

Thanks a million!

cltt97

To newrunner

It takes a while till the system normalises. And in the meantime it'll be a roller-coaster of feeling good and bad, but in general people are started on 50mcg and then tested after 6 week and dose adjusted upwards accordingly. Most people are reasonably stable on a dose of 100 +/- 25 mcg (usually there's a step of 75 inbetween). But as I've said previously, you have to start up slowly, as the body needs to get used to the hormones again, and whacking it with too high a dose can be highly unpleasant and even dangerous.
In any case, what you can do in the meantime, is try to avoid carbohydrates - slow thyroids appear to do something to the digestive enzymes, most people do better on a fish/vegetable type diet. Try and supplement with selenium, it is needed to convert T4 to T3. Make sure you take your tablets every day and at the same time and get all the blood tests mentioned in previous posts. Keep a food diary.
Hypothyroidism is a highly person specific condition and there is no magical treatment that works for all, so you need to learn as much as you can and observe yourself to find what works for you. But most of all, patience, don't try tackle everything at once, you need to avoid stress at all cost. Hope that helps, anything else, just post here, plenty of people with lots of experience on this board.

dollydishmop

newrunner wrote: »

Hi everyone,
Also the side effects for Eltroxin arent great, tummy etc, I'd really appreciate anyones experience or advice?

I'm guessing you've only just started on the Eltroxin, hence the tummy side-effects. If so, they will go, your body will get used to the Eltroxin, and that particular side-effect will go.
I had terrible tummy problems the first week....but they did pass. I quickly learned to keep a good supply of Loperamide or Immodium handy, usually the symptoms started within an hour of taking the pills. I could set my clock by them. But after 7-10 days I had no further problems.

If that side-effect doesn't start to subside after a week or so then I suggest you mention it to your Dr.

Cllt has given you excellent diet advice, which can help immensely. All I can add is to try and ride through the exhaustion as best you can, although we all know it canbe totally soul destroying...but once your levels start to improve you'll (hopefully) feel better than ever!

One thing I do with my Eltroxin is to take them first thing in the morning, and then I don't eat or drink within an hour of taking them. And I try not to take any other meds/vit supplements etc within 4 hrs of taking them.
I also keep them in the fridge. I've read it in a few places to keep them refridgerated. I don't know if it helps, or if this is more for people living in hotter climates, but I figured it doesn't do them any harm either. And I will do/try anything to ensure the dose is optimal and working to max efficiency.

Best of luck...this is a great thread for support & advice Whatever the particular thyroid issue might be, there'll be someone here who has been through it at some point.

newrunner

Hi cltt97 and dollydishmop,

Thanks so much for your posts I really appreciate it! Great advice about the diet, I'm also very gluten intolerant so finding that a struggle, low carb will hopefully help. Unfortunately regarding stress, im doing a PHD and working 2 jobs so I cant really escape stress, but its good to know that its bad for the thyroid, at least ill be more aware of it now

Good to know about the eltroxin too, im only on it a week and my tummy is in bits, was really dizzy yesterday too, but if it helps lift this exhaustion I'd be happy!

thanks again

El.duderino

CTTL said some very relevant points. Each person is unique, somethings will work, Some wont) It is a life long learning curve. Welcome to the see-saw.

dollydishmop

El.duderino wrote: »

Dolly please only give advice that you know to be 100% credible or from a medical source.

I take it you're asking for a cite? That is fair enough. Well here's one that I believe to be both credible and from a medical source.

M Sara Rosenthal, Ph. D [Director of the University of Kentucky Program for Bioethics & Patient's Right andAssistant Professor, Bioethics, Department of Behavioural Science, University of Kentucky College of Medicine], The Thyroid Source Book (5th Edn),2009 ISBN 0-07-144161-1
Chapter 10, Page 160

I won't quote the whole relevant section, but essentially she states that, unknown to many doctors & pharmacists (her words not mine!) T4 is very sensitive to heat and can go bad fairly quickly.

If you don't have the book, it is well worth purchasing it.

Oh... it was also suggested by my endo. He stated that the meds should be kept at a stable temperature, not one that can fluctuate from hot to cool (like a kitchen or most rooms in centrally heated house), and as such the fridge was the most controlled temperature area in the average house.

I apologise for not quoting these details in my original post, and for that fact being so annoying to you. I was posting in a rush, battling with an unstable broadband connection (still am :mad: ), and yes, statements such as those I made previously should always be qualified by cites or their accepted equivalent.

El.duderino wrote: »

Taken from Goldshield website. Popular brand of eltroxin.

5. How to store Eltroxin® Tablets
Keep out of the reach and sight of children.
Do not use Eltroxin® tablets after the expiry date which is stated on the box. If your tablets are out of date, take them to your pharmacist who will get rid of them safely.
Do not store above 25°C. Store in the original package and protect from light and moisture


Storage Instructions for Eltroxin Tablets

Levothyroxine tablets should be kept at room temperature, 15-30°C in a light-resistant, air tight container. Keep away from children and moisture.

Interestingly, the data sheet from my latest script of Eltroxin, also from Goldshield, and collected from my pharmacist on Monday, is worded slightly differently:
I quote (from the data sheet (latest revision May 2010), right here in front of me, here on my desk)...

Do not store above 25°C [no mention of room temprature or min storage temps???]
Store in the original packet in order to protect from light and moisture [amazing how the emphasised wording places a different emphasis on the instruction - you see, Eltroxin comes in a blister pack, so as long as the pills remain in the pack there is no issue with moisture, refridgerated or otherwise]

Also, your source appears to contradict itself a little? In one sentence it states to store under 25°C, then in another it states store between 15-30°C...which is it? Under 25°C or under 30°C? That's a fair temperature difference?

Actually, could you please give a link to the info you quoted above, purportedly from the Goldshield's own website?
I went to the Goldshield site, and I couldn't find your quoted info anywhere?
What I did find was the following:

100mg Eltroxin - IRE data - latest revision December 2010

http://www.goldshieldspc.com/spc/LEVO%20SOD%20ELTROXIN%20TABS%20100MCG%20IRE.PDF

6.4 Special precautions for storage
Tablet containers: Do not store above 25ºC. Keep container in the outer carton in order to protect from light.
Blisters: Do not store above 25ºC. Store in the original package in order to protect from light.

50 mg Eltroxin - IRE Data - latest revision November 2010

http://www.goldshieldspc.com/spc/LEVOOTHYROXINE%20SODIUM%20ELTROXIN%20TABS%2050MCG%20IRE.PDF

6.4 Special precautions for storage
Tablet containers: Do not store above 25 º C. Keep container in the outer carton in order to protect from light.
Blisters: Do not store above 25 º C. Store in the original package in order to protect from light.

Which goes along with what's printed on their data sheets, but not using the wording you qoted above, or the min/max temperatures?

Absolutely not calling you out here, genuinely want to see where your info came from. After all, in thyroid-land every day is a skool-day!

El.duderino wrote: »

Can you guess from my sharp tongue. HYPER or hypo!

I'm sorry that you're in Hyper hell right now, I have been there and its not fun

El.duderino

I have to say I,m embarrassed to read some of my post back. I apologize for ripping your post to bits and having a dig. You obviously put alot of effort into your reply and other posts.

The eltroxin charts as you asked for are from Here and here. Goldshield is the brand I use. Which is the first link.

I was in bad form last night. I need to be nailed to a chair at the minute.

I will edit my post.

dollydishmop

El.duderino wrote: »

I have to say I,m embarrassed to read some of my post back. I apologize for ripping your post to bits and having a dig. You obviously put alot of effort into your reply and other posts.

Thank you....I also initally wrote an equally snippy reply...but have spent what feels like the whole afternoon dialling it right back and repeatedly re-wording it to make a whole lot more civil :pac: <blush>

El.duderino wrote: »

I was in bad form last night. I need to be nailed to a chair at the minute.

You're hyper...and in my book that would almost excuse you from murder a grumpy forum post is nothing!

Claregal2

Hi Everybody,
I will apologise now for any spelling mistakes:
I had a partial Thyroidectiomy in August to remove a thyroid nodule that appeared last February. I then went on to have a complete Thyroidectomy in September after a diagnosis for Thyroid Cancer. The week before my 2nd operation i was started on 25mcg of Eltroxin and the morning after my operation i was increased up to 150mcg. I feel the biggest struggle is going to be finding the right dose of Eltroxin for me! Last bloods my levels were low so dropped to 125mcg, this was around 3 weeks ago, i have not felt right since starting to take this medication and cannot wait until i start to feel normal again. I have had trouble getting my head around understanding the Thyroid and i have found this thread very helpful, and think i may be posting here quite regularly, so hope you don't mind me joining :-)

cltt97

Hi there missus, welcome to the club!

LimerickBishop

Diagnosed NOV '09 TSH of 75. Put on 75mcg of Eltroxin. 100KG
Blood Test MAR '10 TSH of 17. Kept on 75mcg of Eltroxin. 95KG
Blood Test JUL '10 TSH of 15. Put on 100mcg of Eltroxin. 93KG
Blood Test SEP '10 TSH of 12. Kept on 100mcg of Eltroxin. 92KG
Blood Test NOV '10 TSH of 10. Put on 125mcg of Eltroxin. 91KG
Blood Test JAN '11 TSH of 5. Kept on 125mcg of Eltroxin. 90KG
Blood Test APR '11 TSH of 4.18. Kept on 125mcg of Eltroxin. 89KG
Blood Test JUL '11 TSH of 2.40. Kept on 125mcg of Eltroxin. 84KG
Blood Test SEP '11 TSH of 6.04. Kept on 125mcg of Eltroxin. 85KG
Blood Test NOV '11 TSH of 3.00. Kept on 125mcg of Eltroxin. 85KG


So, the downward trend of TSH has resumed, and its back in the 'good' zone. I expected it since I was feeling very giddy just thinking of a funny joke just before I gave the blood sample a few days ago. Also, I've just found steady work again in London. London was where I was 2 years ago when I started feeling unwell and got diagnosed. I'm doing evening and night work again, so I reckon I'll have to watch what I eat and take care of myself more than before.

mrkdips

I have being diagnoised since about 2004 with underactive thryoid but lately my weight has crept up very badly and I am now 3-4 stone overweight AGAIN. My mood is the only way described as depressive and I can't seem to snap myself out of it. I seem to be constantly crying or if not crying feeling very morseful in myself - generally I jknow I would not be described as that as I am generally a happy positive person. Doc only says to exercise more but I honestly do and I eat healthy so I am really depressing here. I am on 200mg Eltryroxine daily. Ireland badly needs a support group

cltt97

Yes, we really could do with a support group....

When did you last have your levels checked, and have you ever had your T3 tested?

ChewChew

Knackered.com

Realised I haven't had my bloods checked in 18months :eek: so going to get them done in the morning. I can really feel a change in my levels. I was good for a while (I'm on 150 eltroxin a day) but now I can feel it slipping... yawning from the moment I wake is a pain in the ass

harr

Hi
Had been feeling **** over the last few months,tired,run down and very cold and no sleep.As i have been on Eltryroxine since birth I taught it have been some thing to with the long term effects of that,I am on 200mg for the last few years and still get bad symptoms of the under active gland.
About 7 weeks ago i started to get very bad heart palpations so bad in fact i spent 6 days in a heart ward in the hospital,the heart rate was over 170 for 28 hours before they managed to get it under control.
After loads of test including countless blood test because they were sure it was because of the eltryoxine,but no after a ultrasound they discovered that one of my kidneys is in the wrong position and its was only working at 10% it should be.
To cut a long story short i am looking at them possibly removing the non functioning kidney or being on a lot more meds for the rest of my life.
I am currently on 8 tabs a day including the eltryoxine,i am constantly tired and run down,cant exercise apart from a little walk and am finding the diet very hard.With two kids under 4 in the house and me being a full time house husband the day can be long and tiring.
I was also turned down for medical card because my wife is working so to add to everything is the money worries.
Sorry for the long rant,but its seems to be one thing after another with me,

cltt97

So sorry to hear about your misery Harr, it sounds horrendous what you went through. I only ever had to endure a heart rate of 130 for about 6 hours when it's usually about half of that and that put me off that experience for life, so I can't even imagine how you must have felt.
The whole kidney thing sounds very scary,too. I suppose the only consolation is that you know what the problem is and that hopefully it is manageable and can be brought back under control. The main thing is not let yourself dwell too much in the "why me" corner but be kind to yourself, don't try to push things that can't be pushed, if you can't exercise right now, don't, and by all means, keep ranting here, we all need to vent!

esperanza1

Anyone who thinks they may be suffering from thyroid problems needs to see a professional endocrinologist (forget your GP!- and go for a blood test every SIX MONTHS to make sure everything is stable. I can PM the name of a specialist abroad to those interested.

Wyldwood

Hello All, hope everyone is feeling well. An update on my thyroid roller coaster, latest bloods have shown that I'm now gone well underactive again. TSH 10. Back on 50 mgs Eltroxin and hoping I won't start palps etc. again. Funny thing is that I feel very well, no underactive symptoms at all. What a pain this condition is!

esperanza1

Wyldwood wrote: »

Hello All, hope everyone is feeling well. An update on my thyroid roller coaster, latest bloods have shown that I'm now gone well underactive again. TSH 10. Back on 50 mgs Eltroxin and hoping I won't start palps etc. again. Funny thing is that I feel very well, no underactive symptoms at all. What a pain this condition is!

If you begin to have palpitations with your new dose, then you need to reduce the dosage. This happened to me last year. It takes a while to get the right dose. I've heard that soya products can have an effect on the thyroid, so avoid soya if you can. Better to be safe than sorry.

cltt97

Hi Wyldwood, when all this madness happened to me, it was the exact same. Once I stopped the meds I felt wonderful, for a good few months, and then slowly the hypo-symptoms came back, but just a word of advice, or more like hopefully helpful comments - when I started back on the meds I seemed way more sensitive than before and despite being very very underactive I had some "hyper" symptoms, and only by taking very small amounts and increasing very slowly did I manage to readjust again. So maybe be careful with introducing too much too soon.....
but glad to hear you're back to "normal" (feeling wise that is!!!)

Lolabear

hey everyone,

my thyroid trouble is pretty random - my thyroid is normal but my TSH level is pretty high, so the doc put my on 25 eltroxine - then went for 6 week blood test and level still high so i got put up to 50mg's,

but i am still wrecked i just wana sleep, and weight gain isn't ideal either... must go for blood test next week sometime because it has been 6 weeks,

please tell me it gets better!!, great thread though good to know im not the only one who is tired all the time!!

ChewChew

Lolabear, I wish I could tell you it gets better, I just know in my case it certainly doesn't/hasn't but everyone is different. Increasing your eltroxin dose to suit you has to be a gradual thing, so please try to bear with it, as hard as it it!! best of luck.


I got my bloods done on Wednesday, got a call from the GP today. I've been on 150mg X 6 days 100 X 1 day so I've to increase to 200 X 2 days and 150 X 5. She didn't tell me what I dropped to though as she was anxious to get me increasing from tomorrow!! 7 years I'm doing this... 7 poxy years!! Aaahhhh!! I just wish it could get sorted for good!! I'm incredibly fed up.

SarahH2O

This is a great thread.Reading so much that is familiar to me.Not been feeling too well this past year.Diagnosed with pernicious anaemia and started on the B12 injections,energy came back and was feeling great.Then started to have periods of a few days where I would be totally exhausted for no reason.Would find it hard to get out of bed in the morning somedays (I'm not a morning person but this was different,literally a physical struggle to get up).Having to go to bed early even though always up until 12am.Loads of hair in the shower tray,really feel the cold and pulse is always slow.Bloods showed a TSH of 4.5.Had blood done 2 weeks later and it was 1.8,TPO antibodies done then,positive at 190.Having frequent feeling of swelling in my neck and being croaky. Sent for an ultrasound and have six nodules on my thyroid,all 6mm plus,the biggest is 8mm.
Going to see and endo in a few weeks time.What is likely to happen at that appointment?.My blood results don't seem very high but am definitely having symptoms.

chessguy

hmmmmm.. here we go

For hypothyroidism you are prescribed T4 Eltroxin, the idea is your body will convert this to a good form of t3 sounds
good in theory, lmao



when docs check test blood results even though a test shows in the lowest category they tend to say its okay ,

because they are general doctors and even though they are great they have no time to read up they are far too busy ..hmmmm

make sure you get your results printed out,keep them

Get all the following checked it is extremely imortant,##
get vitamin D25 checked ( its the one you get from sunshine,) you can also get a tablet supplement)its called D3
potassium
vitamin b12
sodium too
and magnesium too
as they all affect thyroid issues and often these alone can be the permanent fix.WoW

do not be afraid to ask for them they are yours#

then when at home check your results with the recommended on the tests ( the recommended is usually on the forms right next to it,

And guess what i will almost guarantee if you have diabetes or thyroid issues 2 of the minerals at least will be low to very low , Voila now get this sorted.( If you need to take minerals make sure they are chelated ( not in the oxide format) which means you basically absorb them better ( when chelated they usually end in ..ate,

And get the test repeated in 3 months again .


These things are so darn important , that lack of these can cause so many issues,
Why ??/ ?????

hmmm ....Basically we work of electric signals these minerals ensure are signals are sent around correct,
otherwise we are like a buggy computer.

If your doc has not done these tests do ask why,

also if you have thyroid issues make sure the RT3 free T3 and free T4 tests are done ,
and also the cortisol test to check your adrenals, otherwise the eltroxin is just gonna come out in your pee.
and may look good in the results but not actually help you..

If he/ she says the RT3 test is useless then show them the RT3 printout it is ABSOLUTELY required to make a correct diagnosis,



iF you have a thyroid issue please read this .
http://www.holtorfmed.com/handouts.html

Now on the left click thyroid disorders
and and you will see the handouts

select this >>> Tissue Levels of T3 with T4 Only Perparations


also select this >>> Reverse T3 is the Best Measurement of Tissue Thyroid LevelView PDF

If you have to prinf these pDF'S out show them to your Endo or doc,

now you will clearly see why T4 Alone will not and CANNOT resolve your issues(over a longer peroid things will get worse if you take T4 only )
you always need T3 MEDICATION too IF YOU HAVE HYPOTHYROIDISM to get optimal resiults

the blood test they do shows TSh and T3 etc but the tests only show what is in your blood not what you actually use and absorb ,


so the tests may show great but you are not getting the benefit , as diff cells and organs are not getting the T3

Also avod goitrogenic foods,
Like brocolli unless cooked well and eaten about 4 hours after medication,
and do not touch soya it affects your medication
they even hide soya in breads now..gRR

I am no doctor I cannot advise on medical issues I am no fool either



goodluck
chessguy

cltt97

Hi chessguy,

just wondering - did you manage to get your RT3 tested? I am not aware of anywhere in Ireland that does that test and it appears only option is to send samples to the UK, which is a bit complicated. It's the only test I haven't managed to get done yet....

chessguy

cltt97 wrote: »

Hi chessguy,

just wondering - did you manage to get your RT3 tested? I am not aware of anywhere in Ireland that does that test and it appears only option is to send samples to the UK, which is a bit complicated. It's the only test I haven't managed to get done yet....

hmm the RT3 test I understand it can be done PM me ... I have an idea



the Endo's in many hospital sare of the assumption that it has no value what so ever ,

but you can see the referance articles i linked in my previous post ,

also published medical articles show its importance

http://www.ncbi.nlm.nih.gov/pubmed/19961039
published medical articles
http://www.ncbi.nlm.nih.gov/pubmed/21104580
ref below is from the link above
>>>> T3/rT3-ratio, which is supposed to reflect the tissue thyroid hormone metabolism,


chessguy
goodluck

SarahH2O

Thanks for the that Chessguy.
Have had all those levels checked except for the D3.
Feel a bit more informed before my appointment.
Happy Christmas!.

Graces7

Horrified at what I read here and on a UK thyroid forum.

I was reading up as a relative overseas has been battling clear thyroid symptoms for years. She is a text book case but could get no proper referrals etc. LIke so many here and in the UK.

She finally got an appointment with an endo there who walked her down the corridor to a psych; no history taken etc.

I got really angry and started reading up; read about dessicated thyroid etc, not the armour. Sent to the UK, sent it off and within a few weeks effects were amazing; nails hard again, skin better, and her shoes are too big so she is losing the dreadful amount of weight she had put on and been blamed for.

There is worse. Some ten years ago, she started with high cholesterol, heart and BP problems. Because her mother had died of heart diesease, they said that this was hereditary. She has been on heart meds, undergone some very dangerous procedures and almost died.

Her cholersterol is down now and heart symptoms abating; it was the thryoid issue all along and that is well documented. I googled it and was so shocked.

She cannot get off the heart meds and cannot take the thryoxin etc with those meds. So now I send for the extract and post it to her.

Oh and her arthritis is less painful; she had one hip replacement already.

Please, take care out there! drs can and do get it so wrong. She told them over and over what she knew it was but now we have the proof and the remedy that works well.