thyroid misery

cltt97 · 09-04-2013 3:58pm

I'd say there is a good chance that you have Hashimoto's with readings like that... T3 is not routinely reported, I believe it's a bit expensive to do and usually not requested. It's difficult enough to convince a GP to do it, and as I have found out, labs now won't report it unless requested by an endo or if there is a clinical indication (which they recognise) as to why it is needed.

rOBeRt frETt · 10-04-2013 12:19pm

Hi All,

been a long time since I was on this thread, I just wanted to add to cltt97 comments regarding blood test results, my experience (with a great GP) is that I always get all the numbers back (except TPO), I also always get my Vit D levels and importantly cholesterol levels checked too, clinically whats measured is Free T4 and TSH - that's an 'industry standard' diagnostic read out that doctors run to see if they need to adjust your medication, but those numbers are not always a good indicator for how the patient is using the hormones - also you should ask your doctor, please test my vitamin D, iron and cholesterol (the may not understand that hypothyroidism has been clinically proven to effect all of these) , Doctors are not Endocrinologists, so technically all they need to know is 'take blood, interpret TSH, diagnose and medicate accordingly' - don't be surprised if you know more about the disease than your doctor, most have a cookie cutter approach which is understandable, if your doctor is not willing to run other important blood tests you should seek better medical care. (please take as opinion - not advice)

hypothyroidism is one thing - which in and of itself is quite treatable, however the slowing of the metabolism and drop in body temperature means many chemical reactions don't take place the way they do in euthyroid, so blood tests should extend to scan for deficiencies and elevations which a person with slow metabolism might be suffering from

Boronia · 10-04-2013 6:42pm

Hi Bone Tired-feeling crap all the time can be such a nightmare! I feel for you...and as others have said, here is a good place for info, different ideas and support.
I go to a GP/Herbalist in Galway-Dr Dilis Clare in Health and Herbs on Sea Rd. She listens carefully to symptoms, treats you as a whole person (not divided into different parts to see different consultants) and also looks at the bloods. She treats by herbs-tinctures and teas, and supplements. I have found her fantastic and my symptoms have improved a lot. I still get tired and have to rest for a while after work, have some digestive probs and muscle aches but am much more able for life than before. She costs about the same as a private consultant....for the consultation (30-40 mins), advice, tincture, tea and supplements....depending on what is needed.
Don't know if this is in your price range...but you get plenty of value for your money...only my humble opinion of course.
I think that for most of us here, we have found that we have to be proactive, take responsibility for our own health, be our own advocates and read widely so that we can make our own decisions and deal with Doctors forearmed with knowledge.
Good Luck

Amazingfun · 11-04-2013 5:27pm

rOBeRt frETt wrote: »

Hi All,

been a long time since I was on this thread, I just wanted to add to cltt97 comments regarding blood test results, my experience (with a great GP) is that I always get all the numbers back (except TPO), I also always get my Vit D levels and importantly cholesterol levels checked too, clinically whats measured is Free T4 and TSH - that's an 'industry standard' diagnostic read out that doctors run to see if they need to adjust your medication, but those numbers are not always a good indicator for how the patient is using the hormones - also you should ask your doctor, please test my vitamin D, iron and cholesterol (the may not understand that hypothyroidism has been clinically proven to effect all of these) , Doctors are not Endocrinologists, so technically all they need to know is 'take blood, interpret TSH, diagnose and medicate accordingly' - don't be surprised if you know more about the disease than your doctor, most have a cookie cutter approach which is understandable, if your doctor is not willing to run other important blood tests you should seek better medical care. (please take as opinion - not advice)

hypothyroidism is one thing - which in and of itself is quite treatable, however the slowing of the metabolism and drop in body temperature means many chemical reactions don't take place the way they do in euthyroid, so blood tests should extend to scan for deficiencies and elevations which a person with slow metabolism might be suffering from

I really appreciate your post as I just went to my GP and he said it wasn't really that good of an idea to do another blood test now as my TSH was down to 2.5 in February, so he is going to refer me to an endo. I am pleased enough I suppose for, as you have pointed out, my GP has gone by TSH alone so far in terms of treatment. Hopefully I can get a few more answers and I am going to ask for all the things you mentioned here to be tested before I go into see the Endo (whenever that will be, lol).
SO for now I will stay on the 75 mcg of Eltoxin and leave the iodine supps alone until I talk more to the Endo, see what they have to say.

Rosie1983 · 14-04-2013 2:09pm

Hello all

I'm sure this has been discussed before but how may of you have tried Erfa thyroid? My Endo has prescribed it for me but the pharmacy said it would take two weeks to arrive, so it should be here at the end of next week, fingers crossed! Also, does anyone know how much it is? They didn't know...

I'm really hoping it works well for me, as Eltroxin just doesn't seem to have the desired effect. I'm sick and tired of going back and forth every 8 weeks or so for blood tests and watching my TSH yoyo! It's about 2 years since I was first diagnosed. I definitely don't feel as tired as I did then but I don't feel 100% either. So any and all info on Erfa and your experiences with it would be greatly appreciated!

One other thing - has anyone noticed any overall improvement if they stop taking hormonal birth control?

Thanks a mil.

cltt97 · 14-04-2013 4:10pm

Hi Rosie,

I take Erfa - 30mg, 100 tablets cost about 60 Euro. You should definitely feel better on it, as it has T3 in it also, so that will give you a little extra kick. I also take T3 only, so a combination of the two. I know a lot of people who started feeling much much better when switching from Eltroxin to Erfa/Armour and similar, so I think you will definitely notice a difference.
Am wondering, are you still with Dr B? If not would you mind sending me a pm about who prescribed it for you?

Rosie1983 · 14-04-2013 5:03pm

No still with him - he prescribed it. Really hoping it suits me and I can stay on it. So is 30mg one tablet? Is it one tablet a day? Sounds expensive, but at this stage I don't mind paying for a more expensive treatment. If it works well it'll be more than worth it!

cltt97 · 14-04-2013 10:14pm

There is a 30 mg tablet and a 60 mg tablet. I take two of the 30mg a day. I could take one 60 mg tablet but I spread my tablet taking out across the day. It's definitely much more expensive than Eltroxin. How much have you been prescribed?
I've never met anyone who didn't feel well on Armour or Erfa actually, if anything it again might not have been strong enough and they had to go on to T3 only. Trick is to introduce it slowly as you need to get used to the T3.

Amazingfun · 14-04-2013 10:20pm

I found this link the other day, might be of some use, seems they are a bit cheaper on the Efra anyways:

http://www.antiaging-systems.com/178-thyroid-armour-nature-westroid

I am now just waiting for an Endo appointment date and I am going in armed with all my research and hope to be switching to one of these T3 replacements as well. I was riding kind of high there for a while but find I am absolutely exhausted these last two weeks. I slept over 15 hours on three separate days in this period and still felt like I could sleep more shortly after getting up.
Crazy.

cltt97 · 14-04-2013 10:31pm

Must look into this, I tried to order from the manufacturer directly, but no joy. It is quite expensive and one has to order a good bit in advance as it can take up to 3 weeks for the distributors to get it to the pharmacy. As it is unlicensed they only order it on demand.

Wyldwood · 15-04-2013 11:25pm

Amazingfun, that's a very interesting article but there is some conflicting advice in there, such as switching from dairy products to soy and taking thyroid supplements with other vitamins, both of which are generally accepted as not advisable.
However, it has raised a question in my head and I wonder if anyone here has had cardiac symptoms while on synthetic supplements & successfully switched to Armour or Erfa without having cardiac problems such as palps.
I broached the question of switching from Eltroxin recently with my endo and he said anything with T3 would aggravate my cardiac symptoms, although he wasn't entertaining natural thyroid anyway.

cyning · 15-04-2013 11:38pm

When I was pregnant I had an ECG because my heart rate was 145 coupled with low blood pressure: fun

anyway it showed up a mild anterior ischaemia. (Well that's what first doc said, second doctor told me no one told me that because it was clear. Third doc hadn't a clue what I was on about and said I hadn't had an ECG!) I was on T3/t4 combo so endo wasn't in the least bit worried: I'd imagine your endo might be worried about you going hyper? I was on a beta blocker when I first started t3 and I do occasionally get palpitations (although strangely not since I was pregnant although I did before).

cltt97 · 16-04-2013 8:52pm

Well, Eltroxin nearly killed me with racing pulse and palps and what not else - actually especially the exploding head, that was the best one of the lot - none of which I have now since on Erfa and T3. I did feel the T3 in the beginning, but nowhere near as mad as on the Eltroxin. I also added a very low dose of Hydrocortisone, so this formulation works for me, whilst I could not even tolerate 25 ug of Eltroxin in the end (and had been on a dose of 120 before to be within "normal range").

All I've got to do now is shift the weight, I need to lose 2 stone! Lovely...

cyning · 16-04-2013 11:06pm

Right there with you I have two stone to lose too: maddening! Despite taking ip walking 4/5 times a week with a22 pound baby in a sling, cutting out choc, dancing once a week and breastfeeding I haven't lost a pound... Maddening!!

At least thyroid is stable and I feel good though

Wyldwood · 17-04-2013 11:54am

Well I'm the opposite! I lost about a stone and a half two years ago when I went hyper, I wasn't overweight to start with, but I can't put a lb on now.

I think I spoke too soon about feeling well. After a good run over the last few months I started feeling the jitters, chest tightness and headache again in the last few days so off the meds again for a while. I'm so disappointed as I thought I'd cracked it.

Looks like the meds build up in my system over time and I have to "detox" & start all over again then. Weird.

cltt97 · 17-04-2013 7:51pm

I had that, too. I would do fine for a while and then suddenly slap bang back to square one. I think you should consider switching to natural thyroid and see how that works for you, for me it was the right thing to do. I think that for some people T4 doesn't get utilised properly and pools and then causes havoc. It certainly did for me anyway!

Wyldwood · 17-04-2013 8:08pm

yes I'm looking at that option at the moment. Problem is trying to find an endo to prescribe it. My endo, who is good, won't even talk about it.

cltt97 · 17-04-2013 8:47pm

Maybe you could suggest to him contacting a couple of endos who do prescribe it and ask them for their experiences with their patients?

Orla K · 17-04-2013 9:49pm

It feels like my body hates me. I went to the dentist today and I just feel awful, struggled to stay awake and now I cant sleep other things too but thats tmi.

I really wish that there were more studies into thyroid stuff, that the doctors/endos would look at these and that people with thyroid problems and thyroid related problems would get better care. Its a big wish:(

Amazingfun · 18-04-2013 3:46am

Orla K wrote: »

It feels like my body hates me. I went to the dentist today and I just feel awful, struggled to stay awake and now I cant sleep other things too but thats tmi.

I really wish that there were more studies into thyroid stuff, that the doctors/endos would look at these and that people with thyroid problems and thyroid related problems would get better care. Its a big wish:(

I hope you feel better soon Orla, I have been battling extreme fatigue myself this past while and I know what a drag (literally) it can be. And like you, I seem to be wide awake at the wrong time (it's now 3:40 am)

I have suggested the "Thyroid Sexy" page on Facebook before, you might like it as there is quite a lot of activity and interaction on it, they seem to be always posting the latest research and info, etc . Just a suggestion, I get a good lift from it.

As for me I had an "eeg" today and this is just having had my carotid artery checked....even though I told the Consultant (very nicely, lol), that I'm about 99% sure the attack I had (which led me to being diagnosed hypo in the first place) was just down to that: my thyroid/hashis/needing thyroid replacement. I don't like to appear so arrogant as to 'lecture' people with that level of education of course, but despite all his degrees he said himself he had limited experience with some of the things I was telling him about. I shared with him as many stories as I could to explain why I thought this, similar experiences I have heard other thyroid patients discuss, and in fairness he seemed to listen, but said we'll keep doing these tests anyhow. He is just ruling things out I suppose.

So I just can't wait to see this Endo, but hearing Wyldwood's experience of having one that won't even discuss Natural dessicated replacements makes me a bit nervous, but we'll see. Will take it one step at a time.

Orla K · 18-04-2013 9:11am

Amazingfun wrote: »

I hope you feel better soon Orla, I have been battling extreme fatigue myself this past while and I know what a drag (literally) it can be. And like you, I seem to be wide awake at the wrong time (it's now 3:40 am)

I have suggested the "Thyroid Sexy" page on Facebook before, you might like it as there is quite a lot of activity and interaction on it, they seem to be always posting the latest research and info, etc . Just a suggestion, I get a good lift from it.

As for me I had an "eeg" today and this is just having had my carotid artery checked....even though I told the Consultant (very nicely, lol), that I'm about 99% sure the attack I had (which led me to being diagnosed hypo in the first place) was just down to that: my thyroid/hashis/needing thyroid replacement. I don't like to appear so arrogant as to 'lecture' people with that level of education of course, but despite all his degrees he said himself he had limited experience with some of the things I was telling him about. I shared with him as many stories as I could to explain why I thought this, similar experiences I have heard other thyroid patients discuss, and in fairness he seemed to listen, but said we'll keep doing these tests anyhow. He is just ruling things out I suppose.

So I just can't wait to see this Endo, but hearing Wyldwood's experience of having one that won't even discuss Natural dessicated replacements makes me a bit nervous, but we'll see. Will take it one step at a time.

Thanks, I know when I get stressed my body just decides it doesn't want to do anything The way I see it there's chemical, emotional and physical stress I got all three at the dentist. Luckily I got to sleep at about 1, I don't even remember my alarms, good thing I'm not working or I'd have the stress of being late!

I think doctors are always going to do what they think is best, even if patients think it's pointless after all if something does go wrong it's their job/living that will end. It's grand when it's doing extra test, frustrating when it's not prescribing meds that have made alot of people feel normal again.

I know the thyroid sexy page, I prefer the thyroid change page and the stop the thyroid madness closed group. More the closed group because it feels more honest, people aren't afraid to share stuff and if you look for help you'll get loads of it.

Rosie1983 · 18-04-2013 1:53pm

Hi all

Just tried to post a reply but something went wrong and I lost it! Anyway I'm still waiting to get my Erfa - it should have arrived by tomorrow. But for all I know it has already arrived and they just haven't told me! My pharmacy aren't the best at following up! Anyway I came across this info yesterday on the Erfa website. It's a document about prescribing Thyroid - which is the name of the product that Erfa make - as far as I understand it anyway.

http://www.pdf.eci2012.net/monographie/Thyroid_monographie_ANGLAIS.pdf

I haven't tried Erfa yet so I don't have an informed opinion yet. But I've been on Eltroxin for two years now and it obviously isn't enough, so I'm really hoping that Erfa works!

One other thing I don't think I've mentioned is that my Endo talked about the role of enzymes in the liver play in converting the T4 into T3. And from what I gather, everyone's body is different, therefore everyone's live is different, so that could explain why some people just don't respond well to Eltroxin. Just something to think about...

Also I know I'm a broken record, but has anyone stopped using hormonal birth control because of their thyroid problem? Any info would be greatly appreciated!

Thanks all and best of luck to everyone struggling with this problem, don't give up hope!!

BoneTired · 21-04-2013 11:48pm

Hi guys,

I finally went back to the doctor on Friday to get a printout of my blood test results. I wanted to study them over the weekend as I have to see the doctor later in the week for x-ray results and want to talk to her about them then.

As I said before my results last September were Free T4 16.0(10.5-22.0) and TSH 2.74(0.27-4.20). My results from the 25th March are: Free T4 14.7 and TSH 2.30.

I'm just wondering if anybody could shed any light on a comment that was on the results printout which reads, "Reason for Request: Insufficiently Spun Spec. Rec.?Aged". I would appreciate any insight anyone has to offer.

Thanks in advance:)

Wyldwood · 22-04-2013 11:25am

BoneTired, I think that refers to the age of blood specimen. Looks like the lab felt that the bloods might have been drawn too long before testing so result would be unreliable. However, I'm not a lab technician so you might need to get on to either the lab or your doctor for clarification. Another test might be in order.
Was the blood drawn on a Thurs or Fri? If this was the case the sample would have been sitting there over the week-end before testing.

Boronia · 26-04-2013 4:15pm

Does anyone know are there any endos or Drs in Counties Galway, Clare or Limerick who prescribe Natural Dessicated Thyroid?

xLexie · 26-04-2013 4:20pm

Hey not sure if this is the right thread, but following a routine blood test, my dr put me on elthroxin as I have a lazy thyroid.
I've been on this for over a month and I cannot bear heat on me, which is unusual for me. My showers need to be cold, and although I do be freezing in bed, putting on my electric blanket just makes me uncomfortable. Is this normal and does it go away

Girlsmam · 26-04-2013 7:27pm

I thought i would add my post here also as it looks like a lot of people in the same boat. I'm close to 14 stone. I eat healthily, run 3 times a week, walk every day, attend aerobic classes and I cannot shift a pound. I'm really disillusioned at the moment, I enjoy my exercise & healthy lifestyle but I hate my body shape.my family & friends think I'm making up my health lifestyle at this stage! I have hashimoto, diagnosed 6 years now & my most recent bloods are apparently 'normal' (TSH & T4). I'm taking 50mg eltroxin daily. Apart from my inability to loose weight (my weight rely gets me down) I have about 3 days a week where I feel exhausted, my hair falls out, I have dry skin, bloatedness, slow bowls & other symptoms. I feel so lost about this condition now. I find people don't take it seriously, it's as if people believe it to be an excuse rather than a real 'condition'. I'll be really interested to hear people's response too.
Help!

RentDayBlues · 26-04-2013 8:34pm

Girlsmam wrote: »

I thought i would add my post here also as it looks like a lot of people in the same boat. I'm close to 14 stone. I eat healthily, run 3 times a week, walk every day, attend aerobic classes and I cannot shift a pound. I'm really disillusioned at the moment, I enjoy my exercise & healthy lifestyle but I hate my body shape.my family & friends think I'm making up my health lifestyle at this stage! I have hashimoto, diagnosed 6 years now & my most recent bloods are apparently 'normal' (TSH & T4). I'm taking 50mg eltroxin daily. Apart from my inability to loose weight (my weight rely gets me down) I have about 3 days a week where I feel exhausted, my hair falls out, I have dry skin, bloatedness, slow bowls & other symptoms. I feel so lost about this condition now. I find people don't take it seriously, it's as if people believe it to be an excuse rather than a real 'condition'. I'll be really interested to hear people's response too.
Help!

When you say your results were almost normal, what were they? My levels need to be under 1 for me to feel someway normal

cltt97 · 27-04-2013 12:54pm

Girlsmam wrote: »

I thought i would add my post here also as it looks like a lot of people in the same boat. I'm close to 14 stone. I eat healthily, run 3 times a week, walk every day, attend aerobic classes and I cannot shift a pound. I'm really disillusioned at the moment, I enjoy my exercise & healthy lifestyle but I hate my body shape.my family & friends think I'm making up my health lifestyle at this stage! I have hashimoto, diagnosed 6 years now & my most recent bloods are apparently 'normal' (TSH & T4). I'm taking 50mg eltroxin daily. Apart from my inability to loose weight (my weight rely gets me down) I have about 3 days a week where I feel exhausted, my hair falls out, I have dry skin, bloatedness, slow bowls & other symptoms. I feel so lost about this condition now. I find people don't take it seriously, it's as if people believe it to be an excuse rather than a real 'condition'. I'll be really interested to hear people's response too.
Help!

Yep, sounds like me... I feel much better on natural thyroid and additional T3, but I haven't quite made it into the normal range yet and like you I'm battling with the weight situation. But I'm hoping that eventually my metabolism will kick in properly again. I know how frustrating it is, I always find it hilarious when my friends suggest "maybe you should try weightwatchers" or my sister in law wants to tell me about healthy living.... I have about two stone to lose, must admit I haven't fully attacked my weight yet, as I've never really had the energy, now I'm much better in that department and have started to do yoga and stuff and feel I can cope with it. One thing I have learnt is that you need some serious patience with this condition. I was diagnosed in 2007, so 6 years now, and I'm still not quite there...

But I think the fact that you have the dry hair/skin, bloatedness etc thing going on suggests that the hormone isn't working for you, and you should either try to get on T3 or natural thyroid hormone. Where are you based? It's very difficult to find doctors who will shift from the ancient thyroid treatment regime of "here's your Eltroxin - your results are in the normal range so you're grand and if you're not it's all in your head"....

lovelystuff · 05-05-2013 3:28pm

So I had a good month after getting my levothyroxine upped to 75 a day, following an increase in my tsh to 5.5. I had a few upsetting incidents recently with friends, coupled with the fact I am about to submit my PhD, and I feel like crap again! It's so frustrating to me to feel I might have a good month but that it won't last and I worry this will always be the way. Just came on to rant/for moral support really. Thanks for reading

thyroid misery

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