thyroid misery

rojaels · 02-11-2013 11:58pm

hi wyldwood, i just wanted to know where u get the free T3 tested, my gp refuses to do it,

rojaels · 03-11-2013 12:09am

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

hi im in galway, sorry i cant help as i struggle with gp as far as thyroid is concerned, the so dont understand. hopefully some else can help u.

Wyldwood · 03-11-2013 12:14am

rojaels, I'm in Cork & my gp tests FT3 at the request of my endo. Have you seen an endo?

rojaels · 03-11-2013 12:23am

ya wylwood, saw endo and have to quote her perfect tsh and t4 levels, but suffer terribly with pain and aches, weakness and was told by gp that free t3 isnt be tested any more,

cltt97 · 03-11-2013 11:54am

Unfortunately there are a lot of GPs and Endos out there that are not up to date with the latest developments in thyroid conditions, they go by TSH and T4 to judge if you're well. I have had my share of those ones. It's a battle. The only way forward is to change GP, change Endo, keep going till you find someone who will help.
It is difficult enough to get T3 tested (especially free T3), that is definitely true. I am in Dublin, and I have to go to Tallaght hospital for the test, not all hospitals do it, and Tallaght will only do it if it is specifically requested by an Endo, if it's just the GP ordering it, they won't do it. I believe it's an expensive and more complicated test, so they don't do it routinely.
There is a possibility that you might benefit from natural thyroid hormone (NTH) such as Armour or Erfa. But these are not licensed in Ireland so most GPs and Endos have not heard of it and won't prescribe it. It doesn't mean these meds are not legal, it just means that a doctor has to specifically prescribe it for you personally, and the pharmacy will order it in specifically for you.
One thing you could try is ring around your local pharmacies and find out if they are dispensing Armour, Erfa or T3 to anyone and if yes, who is the prescribing doctor.

cyning · 03-11-2013 11:46pm

I had forgotten how crappy I feel when I go underactive. I'm swinging between under and over at the moment and it's driving me nuts. Just wish it would stabilise a bit: it would make life a hell of a lot easier!

LimerickBishop · 13-11-2013 7:11pm

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
Blood Test MAR '12 TSH of 11.80. Put on M-F 125mcg /S-S 150 mcg of Eltroxin. 86KG
Blood Test JUN '12 TSH of 5.10. Kept on M-F 125mcg /S-S 150 mcg of Eltroxin. 89KG
Blood Test NOV '12 TSH of 6.00. Kept on M-Th 125mcg /F-S 150 mcg of Eltroxin. 86KG
Blood Test MAY '13 TSH of 1.70. Adjusted to M-W 125mcg /T-S 150 mcg of Eltroxin. 88KG
Blood Test NOV '13 TSH of 3.00. Kept on M-W 125mcg /T-S 150 mcg of Eltroxin. 95KG

Hello,

TSH has been raised, but not enough to warrant a change in dosage according to my GP.

Weight has gone up, but this is my own fault, not enough exercise and not eating enough healthy food. Sometimes its hard to do what you know is right. Anyway, last week saw a new emphasis on putting these two aspects right.

I haven't smoked a cigarette in 8 weeks, and I think this may have something to do with weight gain. I only smoked 1 or 2 a day but giving it up has affected my metabolism and eating habits I'm sure.

Amazingfun · 19-11-2013 6:06pm

SO I got my blood test results back (from Vincents) and guess what? They did the T3 testing as requested by my GP--i was delighted.

Now, I don't know which T3 it is, lol.....but still.

I am feeling very good these days I must say, but I feel my Iron is still too low for maximum effect and so I am going to restart my iron supplementation as I stopped it about 3 weeks before these tests.

IRON: 13.9 (9-32)
FERRITIN: 67 (13-150)
TSH: 0.01 (0.27-4.2)
T4 FREE: 17.8 (12.0-22.0)
T3: 2.46 (1.3-3.1)

Hope everyone is doing well. I've even managed to come down a few pounds as I've been trying my best to limit bread and gluten but I'm afraid I am still a long ways from being back in my size 12 jeans, lol.....

sd8 · 28-11-2013 11:29am

so i've been reading this thread and i'm starting to freak a little bit!

Ive been taking Eltroxin since i was a baby as i was diagnosed as underactive when i was born (thats a long 25 yrs!) as I don't know any different ive never really noticed any symptoms bar the feeling cold & tired sometimes and being overweight... It doesnt matter what i do or dont eat i cant seem to lose the weight.

However my main concern here is how little importance has been placed on keeping my thyroid check ups up to date. I get my bloods done whenever i feel like and my doctor has never said anything about making it regular. now i know i am old enough to be making sure i get my tests done regularly but until i came across this thread i didnt understand the importance of all these tests. my doctor never explained the ups and downs hypothyroidism and i have never been to see an endocrinologist. Any tests i've had where any of my levels (dont even no which ones) have been up or down the doctor has never followed up, I also find it strange that when i spent 2 years in oz and returned home my doctor never once asked if i had my bloods checked while i was gone.

I have never realised the seriousness of being hypothyroid, being as naive as i am i assumed the eltroxin i am taking was all i needed to deal with this. I AM SOOOOO WRONG!! and this is why im freakin out!!! I am in New Zealand!!! I came across this post because i have googled this problem with my finger (when i move my hand in certain ways or touch a particular part of my hand it send painful spasms up my index finger) and a link to this thread came up. I cant afford to get medical help over here for either problem, its too god damn expensive, im worried if i stay the six months planned that i could end up doing more harm that good re the thyroid situation.....

Any advice would be greatly appreaciated... thanks guys...

Amazingfun · 28-11-2013 1:39pm

Welcome ,

There are far more active places than here, as you may have gathered ? Especially on Facebook (thyroid sexy, stopthethyroidmadness, etc) just in case you don't get a lot of immediate feedback....but there are great folks here too.

One thing I know about New Zealand is that is where the wonderful *so I've heard* product 'Thyro-gold' comes from

I know a lot of people treat by symptoms, but it sounds like you really do need to have some bloodwork done, just to see where you are at?

grellan1 · 29-11-2013 12:32am

My results showed a decrease in TSH and an increase in FT4, low ferretin and lowish B-12. I am now taking iron, B-12 dot and selenium, thanks to advice on STTM site and here. Waiting to get bloods done in Jan and will insist then that I want FT3 tested and try and take it from there. Has anyone come up with a good Endo in Galway? My chemist has agreed to order what I need, if only I can get past the gp! Keep reading as much as you can.

grellan1 · 29-11-2013 12:35am

Amazingfun wrote: »

Welcome ,

There are far more active places than here, as you may have gathered ? Especially on Facebook (thyroid sexy, stopthethyroidmadness, etc) just in case you don't get a lot of immediate feedback....but there are great folks here too.

One thing I know about New Zealand is that is where the wonderful *so I've heard* product 'Thyro-gold' comes from

I know a lot of people treat by symptoms, but it sounds like you really do need to have some bloodwork done, just to see where you are at?

I would definately agree that bloodwork is important at this stage. It will give you some idea as to what is happening. Anxiety is an all too common symptom with us all, I am afraid.

lovelystuff · 19-12-2013 4:56pm

Hi all, been very quiet around here which I hope means everyone is doing well :-) saw my consultant today and tsh 1.1 but free t4 a little high. Currently on 100 levothyroxine a day, he said to only take 75 on Sundays and rest of the week 100. I feel good at the minute,a bit anxious and restless but its better than the exhaustion I had before. Looking forward to resting over Christmas too. My new years resolution will be to figure out how to manage my thyroid more holistically and actually do it! Hope you are all well :-)

Amazingfun · 19-12-2013 7:11pm

Great to hear from you Lovelystuff, delighted you're feeling better

I got my hands on this today, be great for anyone here still struggling to take a look:

http://whole9life.com/downloads/AIP-Cookbook-Preview-Whole9.pdf

I am starting it in January with a whole bunch of fellow hashimotos gals.......will definitely update here from time to time!

lovelystuff · 19-12-2013 8:13pm

Oh I really wanna do that too! Unfortunately I have a very typical Irish mammy who thinks dinner needs at least one serving of pasta or rice, going gluten free for the last few years was hard enough for them at home! Moving out in Feb and have the slow cooker ready to go and big plans for a whole 30. Definitely let us know how you go!

lovelystuff · 23-12-2013 1:17am

Following on from my post a few days ago saying how well I feel, things seem to have taken a turn!I have had 3 separate incidents of feeling really hot,then sick and faint...was out at dinner with the OH tonight and had to go outside 3 times so I didn't faint! Just wondering if anyone has experience of this,I have never been overactive before so it's weird! Thank you

Blingy · 23-12-2013 10:07am

lovelystuff wrote: »

Following on from my post a few days ago saying how well I feel, things seem to have taken a turn!I have had 3 separate incidents of feeling really hot,then sick and faint...was out at dinner with the OH tonight and had to go outside 3 times so I didn't faint! Just wondering if anyone has experience of this,I have never been overactive before so it's weird! Thank you

Sounds like symptoms of being slightly overactive. Has happened me a few times and is not pleasant. I just reduced the dosage slightly and it went away.

cltt97 · 23-12-2013 7:46pm

I've had those symptoms and worse whilst still being underactive.... not nice at all. I had to come of Eltroxin altogether, can't tolerate it at all. Am now on NT.

lovelystuff · 23-12-2013 8:26pm

Thanks for the replies, its a horrible feeling but again it always helps to know I'm not alone. I get rid of the exhaustion and I get weird fainting hot flushes instead its neverending! My tummy is in bits too, hoping I can eat my gf xmas dinner! I always appreciate this forum and its support so thanks again

Wyldwood · 23-12-2013 11:36pm

Just popping in to wish all fellow thyroid sufferers a very happy Christmas and thyroid misery-free 2014.

cyning · 30-12-2013 5:40pm

Ok slightly weird one for you... My T4 results don't "matter" because I have peripheral resistance to T4. It makes tsh much more important. So why do I feel better with a TSH of higher than 30 than 6.78? I know both make me underactive but that's nothing new

but I'd expect to feel worse when it's 30 than 6? Obviously I feel better when it's not underactive at all!

Orla K · 01-01-2014 7:52pm

I think I read a study that showed that TSH has more to do with the adrenals than the thyroid, but I can't really remember and it was only one small enough study. I really have no idea, I'd say focus on FT3 more than TSH.

What do people here do when they can't remember if they took their tablets. My memory is gone. I've no idea if I took them or not.

Wyldwood · 01-01-2014 10:24pm

Orla K, if you aren't sure whether you took the meds or not I'd skip today and take it as usual tomorrow.
I've started putting my tabs in a pill dispenser as this lets me see if I've taken them or not.

Cyning I can't answer your question as to why you feel better with a higher TSH but I was off meds for a while when I went hyper a few years ago and my TSH went to 36. I felt absolutely great. Doc put me back on Eltroxin and haven't felt right since, even though I'm only able to tolerate 12.5mg.

cyning · 01-01-2014 10:51pm

My T3 results show normal too: I'm pregnant so TSH is a very important indicator for me too. Can't trust my symptoms because they could be thyroid or pregnancy; my endo usually treats me symptomatically too!

I'd use a pill dispenser too

lovelystuff · 04-01-2014 2:05am

+1 on the pill dispenser, it's the only way I ever remember! It's interesting how even the slightest change in numbers seems to affect us all, I have yet to find my sweet spot where I feel like I have energy but without being overactive, so I'm hoping 2014 could be my year for a healthy thyroid :-)

MistySky · 07-01-2014 3:43pm

Just wondering if anyone else out there has been taking T3 meds and could help with a question?

I've been taking Ti Tre for over a year now as I have trouble converting T4 to T3. Thankfully I've been responding well to the treatment (also taking Eltroxin to boost energy levels which are still low).

However my pharmacist says he can no longer get Ti Tre from his suppliers, so I've been switched to another brand of the drug - Thybon. My monthly drug costs have almost doubled as Thybon is approx €50 for a box of 50 tablets. Is anyone else paying this much? Or is anyone still able to get Ti Tre from their pharmacy? I'm guessing there are no other options available to me other than paying the high cost of the Thybon? Can't do without it unfortunately.

Thanks!

cyning · 07-01-2014 3:46pm

Same problem here with the TiTre... Thybon is what my pharmacist can get and it I'd much more expensive unfortunately

I'm off it for the moment but not looking forward to going back on it with the increased costs

cltt97 · 07-01-2014 8:32pm

Well, I used to get Tri-iodothyronine, which is even more expensive than Thybon, so I was quite happy when I discovered Thybon. It's made in Germany so am happy enough about that, too, I think TiTre was made in Thailand and I was always nervous about that....I remember it was taken off the market for a while previously because of homogeneity problems... I'm also having an awful time getting hold of ERFA and have had to resort to Armour lately....

MistySky · 07-01-2014 8:55pm

Thanks cyning and Cltt97! At least there's a stable supply of Thybon, so the cost is not the end of the world. Can't do without it.

Amazingfun · 09-01-2014 2:37am

cltt97 wrote: »

Well, I used to get Tri-iodothyronine, which is even more expensive than Thybon, so I was quite happy when I discovered Thybon. It's made in Germany so am happy enough about that, too, I think TiTre was made in Thailand and I was always nervous about that....I remember it was taken off the market for a while previously because of homogeneity problems... I'm also having an awful time getting hold of ERFA and have had to resort to Armour lately....

Just saw this:

I contacted Dr. Henri Knafo, the Medical Director for Erfa Canada, to ask about availability of Erfa, the Canadian brand of prescription natural desiccated thyroid, which has been experiencing recent shortages. Here is his information, as of January 8, 2014:
The demand for ERFA thyroid has been just crazy for the past few months this is why we were in back order for a few weeks. The situation is now almost solved since we increased the production and will be able to supply all demands. The 30mg and 125mg is available as we speak in all pharmacies across Canada. The 60mg will become available next week.
We will continue to offer support and information for US patients wanting to get Thyroid. They simply can contact us and we will guide them so they can get their medication.
For More Information About Erfa
Erfa
Phone : 514-931-3133
Toll-free: 888-922-3133
Email: info@ECI2012.net
Website: www.eci2012.net

http://thyroid.about.com/b/2014/01/08/status-of-erfa-natural-desiccated-thyroid-availability.htm

thyroid misery

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