thyroid misery

MistySky

Best of luck cyning!

I'm considering giving Armour/Erfa a try too, if I can persuade my Endo. Had some blood tests done yesterday and waiting for the results. I've been feeling exhausted in the last 2+ months. I've had an almost permanent head cold, vertigo for the first time (nasty!) and I could sleep all day and night. Plus I feel like I'm getting alzheimers as I'm so forgetful and ditzy

Anyone switch from a mix of synthetic T3/T4 to Armour/Erfa? If so, how long before you had results? Any nasty side effects?

cltt97

Well I've never had a synthetic T3/T4 mix, but I used to be on Eltroxin, didn't tolerate that at all, then started on ERFA (and/or sometimes Armour), dosed that up really slowly, and then eventually added T3 to that mix. Suspect I have a T4 intolerance. So I did ok on the ERFA but had to increase really slowly as was getting some of the dodgy "T4 symptoms" whereas the T3 worked ok for me, but all in all I can't say that anything miraculous happened with great impact when going onto ERFA. Just tolerated it and steadily got better, together with HC and T3. The biggest "hit" I ever had was when I first went on Eltroxin and I thought someone switched on a pump in my pancreas! Never quite had anything like that happen again with any of the other meds....

_Whimsical_

cltt97 wrote: »

Well I've never had a synthetic T3/T4 mix, but I used to be on Eltroxin, didn't tolerate that at all, then started on ERFA (and/or sometimes Armour), dosed that up really slowly, and then eventually added T3 to that mix. Suspect I have a T4 intolerance. So I did ok on the ERFA but had to increase really slowly as was getting some of the dodgy "T4 symptoms" whereas the T3 worked ok for me, but all in all I can't say that anything miraculous happened with great impact when going onto ERFA. Just tolerated it and steadily got better, together with HC and T3. The biggest "hit" I ever had was when I first went on Eltroxin and I thought someone switched on a pump in my pancreas! Never quite had anything like that happen again with any of the other meds....

What do you mean by this part if you don't mind me asking?

MistySky

Thanks cltt97! Sounds like you're taking T3 meds in addition to ERFA - I had hoped the NDT would cover all bases, but whatever works

I can't tolerate Eltroxin either - the max dose I can take is 25mcg per day or I end up with bad anxiety, palpitations and other side effects.

My life has improved no end since I started taking T3 meds (Thybon). Emotionally I'm a lot more stable (a big relief!), but I still need to address the energy and memory issues.

My main problem is that my body has problems converting T4 to T3. My Endo has told me that I still need to supplement my T4 though, but the low dose of Eltroxin doesn't appear to be making any difference. I'll discuss the other options with her when my test results are back.

cltt97

I have the same problem, Eltroxin ended up half killing me. Couldn't breath, got really bad palpitations, I thought my head was going to explode with the pressure and weird "shockwaves", I collapsed a couple of times, all while on Eltroxin in perfect normal range... I had to come off all medication altogether for a few months and then I very very slowly started titrating up with ERFA, but I hit a plateau there as well where I felt I couldn't go higher as again I felt the T4 symptoms coming back on, that's when I started adding the T3. Ended up on 60mg ERFA and 25ug T3. But something is out of whack again as having some minor symptoms returning after 4 years of getting on fine, so am off the ERFA now starting up with small dose T3 very slowly building up again. I'll see how I get on. I've also added a low dose of Hydrocortisone which helped a lot, too.

Whimsical - when I was diagnosed my TSH was >100. I was put on 50 mcg Eltroxin and literally within one day, my pancreas was gurgling and pulling and tweaking, my digestion started up like there is no tomorrow and I had a lot of energy and zest. The impact was so obvious to me, it was so immediate, and I've never experienced this on any of the other drugs, but then as I've explained above it didn't agree with me long term.... and the "hit" only lasted for a while, things settled down again after a while.

share bear

Hi everyone,

New to this thread. Was diagnosed with overactive thyroid about 6 weeks ago. Have been on meds since and waiting on latest blood test results. White blood cell count on last one was very low.

I am a new mom to a my 10 month old and dunno if the thyroid issues are down to the pregnancy or not. To be honest I know so little about it and am struggling to find the time to research it. Have such little energy and a very energetic baby, that i wish i had more get up and go to play with him.

Has anyone else found that this is a post pregnancy thing and also can anyone recommend any good websites/other for info on thyroid issues.

lovelystuff

share bear wrote: »

Hi everyone,


Has anyone else found that this is a post pregnancy thing and also can anyone recommend any good websites/other for info on thyroid issues.

Hi share bear sorry to hear you have been having a tough time but congratulations on the baby! I think the most important thing is to get a doctor (either a really good gp, or an endocrinologist) to support your treatment and to make sure all the important blood tests are done. If you have time you should read through this thread from the start as there is a huge amount of advice and wisdom from people here!

Wyldwood

Share Bear, Lovelystuff's advice is spot on. Also Mary Shomon has a wealth of information on her site http://thyroid.about.com/

Congrats on the baby, you must be going through hell trying to cope with baby and thyroid problems.

cyning

share bear wrote: »

Hi everyone,

New to this thread. Was diagnosed with overactive thyroid about 6 weeks ago. Have been on meds since and waiting on latest blood test results. White blood cell count on last one was very low.

I am a new mom to a my 10 month old and dunno if the thyroid issues are down to the pregnancy or not. To be honest I know so little about it and am struggling to find the time to research it. Have such little energy and a very energetic baby, that i wish i had more get up and go to play with him.

Has anyone else found that this is a post pregnancy thing and also can anyone recommend any good websites/other for info on thyroid issues.

Hi Sharebear and congrats

Aswell as the sites mentioned the Mayo Clinic explains postpartum thyroiditis quite well: http://www.mayoclinic.org/diseases-conditions/postpartum-thyroiditis/basics/definition/con-20035474

I guess basically time will tell if it is, but it can be common enough.

I have Graves' disease, but am underactive now. Being overactive is hard: let alone without having a baby a and the tiredness that comes with just being a mum (I have a 22 month old, and a 2 month old!). For me after being pregnant my thyroid goes all over the place. It's hard but the tablets will help. I know when I originally went overactive I had weekly blood tests because of the tablets I was on because my white cell count was so low, but as far as I remember (I was 16 a lot went over my head), that stabilised after a month or two. My aunt had thyroid problems after her pregnancy, and they stabilised after about 12 months and she's had no issues since. It takes awhile for the tablets to kick in but once they do you should start to feel much better.

I know you might have heard it a thousand times, but do rope people into help if you can. The tiredness that can come with thyroid problems is awful, let alone with a baby!

share bear

Thanks for the reply's and the congrats. I'll take a look at those websites.

I am waiting to see the endocrinologist in july so hopefully will understand it a bit better by that time. I find the expense and the frequency of the blood test a bit annoying at this stage but I know that trying to get the meds balanced is important.

I'm lucky to have such a good baby, that it hasn't been too bad however was completely knocked for 6 there one day last week and had to stay in bed for most of the day. My partner ended up taking the day off work as we have no family this side of the country and I'm a SAHM so had no childcare alternatives. Im a little worried that this will happen again as I don't know how well that'll go down if its a recurring thing

Sarah_12

I was on here about 4 months ago complaining about how eltroxin was doing nothing for me and got some advice which has helped me loads!
I started on Armour Thyroid about 4 months ago now, initially I didn't really feel much different but slowly started to see an improvement.

I then decided to eliminate gluten from
My diet as I had had stomach problems for many years and somebody in work has recently realised they were gluten intolerant and it sounded similar to how I felt.

Anyway to cut the story short, the armour and the cutting gluten out of my diet has made a HUGE difference to how I feel. I have energy for the first time in years and it's given me a new lease on life!

RachealB

Hi Just found this tread. Hope ok to join in conversation. Found out underactive thryoid over 1 years ago and also have anemia. On elext 125mg but not doing any good. I have gained 2 stone in 12 months and now in the last 4 weeks decided to completely change my diet ( followed a slimming world style of plan, keeped a diary of all food intake) was eating more than I would have before that. Last month was eating around 800 calories a day but on the new diet was on 1200 calories and I have gained a stone in 4 weeks, going mad here at home, Killing myself walking and eating like a rabbit to gain weight. Going back to gp on friday as cant do this anymore. Friends and some family members just think I fat because I eat too much, only I wish that was the issue. Anyone else experience this type of attitude, she must be fat because she eats too much. I have decided to go back to around 800 calories a day and 30 mins of fast walking each day and hopefully be able to stabise my weight. Sorry about the rant. Just over heard my sister in law , saying I was huge and all I must do eat Takeaways 24hrs a day only I wish, havent had a takeaway in over 12 months. Never mind anything exciting. Thanks for the rant.

MistySky

Welcome to the forum RachealB! I've found lots of very helpful and inspiring stories on here - hopefully you will too.

I'm sure you must be feeling wretched enough without the unhelpful comments from your family and friends.

Firstly it sounds like you're taking Eltroxin? As I'm sure you know, it doesn't work very well if you take dairy or iron supplements too soon afterwards - maybe double-check just in case this is having an impact? But more than likely it may be that Eltroxin is not working for you - it doesn't work for many people, including myself.

It sounds like you haven't been referred to an endocrinologist by your GP - I would INSIST on this when you go back on Friday. In my experience GPs have only a limited knowledge in treating thyroid problems. You may have to be a bit pushy, but it's worth it! If you can afford to go private and you're in Leinster, I'm happy to recommend my endocrinologist - Dr Margaret Griffin - she's based in Clane and Dublin.

Finally, in relation to your diet, lots of people have done really well on a gluten free diet. I find it hard to stick to, so I mostly just try to avoid wheat as much as I can (I feel bloated and put on weight with it). I'm not familiar with the slimming world diet, but maybe could you adjust their recipes to exclude the wheat? But more than likely you'll find it easier to lose the weight once you're medication is sorted!

Best of luck with it all!

Amazingfun

Oh Rachel.....I feel for you. My opinion is that you aren't eating enough of the right foods, and of course, if you read my posts on this thread, you will know I also gained weight on Eltroxin, in fact I was miserable and exhausted the whole time I was on it.
I am on NDT now (natural dessicated thyroid) and it's made a massive difference in my life. I actually feel well most of the time now, and this is the first time I can say that in years!

I am now down 31 pounds from where I was January 1st. I used an elimination diet that thousands of Hashimoto/hypothyroid sufferers have found brilliant: it's called "AIP" (Autoimmune Paleo Protocol). Many people don't realize that most of us have an autoimmune illness and that there are certain foods we need to remove (at least for a while) in order to "heal our guts". You can learn all about it here:

http://www.phoenixhelix.com/2013/05/19/what-is-the-paleo-autoimmune-protocol/

http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol


There is hope, but it's a long tough road I've found......but worth it. You have to fight for yourself, and the people on this thread, as well as many of the resources we've shared on here , will help immensely.

Welcome

Wyldwood

Welcome to thyroidworld RachealB. I endorse everything Mistysky and Amazingfun have said.
You need to stand up and fight for proper treatment for your thyroid. As has been said many times before on this thread, thyroid patients are very often treated as hypochondriacs/malingerers and fobbed off with medication that doesn't work.
Insist on an endo appointment. Get copies of all your blood results - don't accept "normal" as an answer. You need to know what range you're in and monitor your progress while noting the amount of medication you're on at the time.
Make sure you get all blood tests: TSH, FreeT3 & FreeT4, thyroid antibodies Anti TPO, Iron levels (low Iron plays havoc with thyroid), Vit B12, Vit D, selenium.

Good luck on Friday, be as persuasive as you can to get proper treatment.

Amazingfun

Good article:

Hashimoto’s is an autoimmune disease and a thyroid disease. But most doctors, healthcare practitioners, health coaches and advocates spend little or no time on the autoimmune part of the disease.

There are many reasons for this, but the result is that there is a huge void in our healthcare model for treating, managing and, even, properly understanding this condition. In this post I will explore many aspects of autoimmune disease and why it should matter to you.

Autoimmune Disease is An Epidemic

There is a a global epidemic of autoimmune disease taking place right now. It’s shocking how little attention it is getting. According to the American Autoimmune Related Disease Association’s current statistics: 1 out of every 12 men and 1 out of every 9 women have autoimmune disease.

This is especially shocking when you understand how autoimmune disease is defined. An autoimmune disease is officially recognized when about 70 to 90% of the target disease is destroyed. You don’t just go from 0% to 70% destruction overnight. How many people do you think have undiagnosed autoimmune disease? Millions and millions.

Rest here:

http://thyroidnation.com/ignoring-autoimmune-hashimotos-disease/

Cocogal123

I have been diagnosed with an underactive thyroid about 4 years ago when I was 16. Since then having received blood tests every few months my dosage of eltroxin kept changing. The last time I had blood tests was December where the doctor told me my thyroid was perfect now and the dosage I was on suited me. But 6 months on and I'm afraid I'm feeling the symptoms of my underactive thyroid once again I'm feeling very lazy and sluggish, could sleep all day if I had the chance. Not feeling very happy in myself and feeling the cold again a lot more. I don't know if these are linked to my thyroid again or if these are just by chance. I can't really afford as a student to be getting blood tests done so I would really want to be sure that my thyroid is acting up again if I had to pay for more doctors visits for it, as the last time I went she gave me a prescription for a year.. Any advice??

inocybe

Hyperthyroid, I had a test done for autoimmune - and when I asked for the result was told that it was 'slightly positive'. I was a bit surprised then to get my next appointment for October. Has anyone else had a slightly positive result and been told what it means?

cltt97

Well, I'm underactive and have auto-immune. The lab test is deemed positive when the antibody count is >50 for Hashimotos. I assume you have Graves being hyperthyroid, I don't know what the cut-off point is, but I assume you're probably slightly above. I assume you had the test done at a GP? I would suggest you go looking for an endocrinologist. GPs tend to like to wait and see what happens.... which form experience is not a good thing and I'd say most people on this board would second that opinion!

cltt97

Cocogal123 wrote: »

I have been diagnosed with an underactive thyroid about 4 years ago when I was 16. Since then having received blood tests every few months my dosage of eltroxin kept changing. The last time I had blood tests was December where the doctor told me my thyroid was perfect now and the dosage I was on suited me. But 6 months on and I'm afraid I'm feeling the symptoms of my underactive thyroid once again I'm feeling very lazy and sluggish, could sleep all day if I had the chance. Not feeling very happy in myself and feeling the cold again a lot more. I don't know if these are linked to my thyroid again or if these are just by chance. I can't really afford as a student to be getting blood tests done so I would really want to be sure that my thyroid is acting up again if I had to pay for more doctors visits for it, as the last time I went she gave me a prescription for a year.. Any advice??

You could see would they just give you a blood referral form for the hospital, in which the case the blood test won't cost anything. I would also suggest reading through the (at this stage painstakingly long) thread, as there is so much advice on nutrition, supplements, diet etc, all of which can help improve how you feel.

lovelystuff

Random question as I know some of you are using diet to manage...I'm on day 2 on the paleo autoimmune protocol and I'm so hungry! Does anyone here do it,and how do you keep your energy up? I used to live on eggs and nuts but they are both out....any lunch or snack ideas would be great it's fairly miserable so far! Thanks

Amazingfun

Oh lovely, in the beginning have LOADS of permissible foods on hand. I am talking a full cooked chicken, roasted veggies, bacon, any other meats you like, sweet potatoes, plaintain chips, kale chips, etc. I needed to feel secure so I kept a LOT of food around so I was never left in a panic. Coconut oil and milk are also brilliant. LOTS of herbal teas as being off coffee for the first time in over 20 years was very difficult as well.

Also: I was/am a bit of a 'sweetaholic'. I made sure to have a good amount of permissible *AIP TREATS* on hand so if I wanted something "bad", it was right there for me. I made lots of these in the begininng, this woman has a brilliant blog with loads of AIP recipes:

http://simpleandmerry.com/blog/lemon-blueberry-cupcakes/


My need for sweet stuff has lessened a lot over the past few months, but around my period I still crave them so these kinds of recipes are a life-saver.

I did strict AIP for about five months, but I have now added coffee back in and it appears to be going OK so far, but if I ever land back in trouble I will put it down again because I know AIP works.

Ps: I am down 31 pounds now since January 1st.

Amazingfun

Oh and BONE BROTH! I have a big pot of chicken bone broth here now that I left simmering overnight. Bone broth is excellent for gut healing and is filled with gelatin, etc, plus it's a really comforting, filling drink.

http://www.thepaleomom.com/2012/03/recipe-chicken-bone-broth-revisited.html

Amazingfun

Here are the sites I followed, they have helped me enormously:

http://www.phoenixhelix.com/recipes/

http://autoimmune-paleo.com/recipes/

http://www.thepaleomom.com/category/recipes/aip-friendly

Pinterest is brilliant for AIP ideas as well:


http://www.pinterest.com/thepaleomom/aip-friendly-recipes/

http://www.pinterest.com/PaleoParents/autoimmune-paleo/

lovelystuff

Amazing fun thank you so much,you have given me loads of ideas! I really appreciate it 😊I think my problem will be making sure I eat enough, my OH is doing the diet with me in sympathy for the first few weeks and he was half starved yesterday too! Do you do a big cook up once a week for lunches etc? I think that might help me to feel less hungry! Thank you so much again!

Amazingfun

In my opinion, the very best thing you can do is get it into your head that this is an exercise in HEALING, not weight loss/weight gain, etc. The focus on healing means you can eat all you want in the beginning, anything that helps you stay compliant.
I ate LOADS in the first month and I still lost weight, believe it or not ! You are new to AIP and in the beginning it seems overwhelming, but in time you'll be an old pro. So the very best thing you can do for yourself is make sure you eat, eat eat! Fats are your friend

Ps: good timing on the batch cooking question, Mickey Trescott of Autoimmune Paleo just released this helpful vid:

PPS: I do huge batches of brussel sprouts and bacon, sweet potato and roasts, etc, then I can just make lunches easily and heat them at work. It makes life WAAAAAY easier!

inocybe

cltt97 wrote: »

Well, I'm underactive and have auto-immune. The lab test is deemed positive when the antibody count is >50 for Hashimotos. I assume you have Graves being hyperthyroid, I don't know what the cut-off point is, but I assume you're probably slightly above. I assume you had the test done at a GP? I would suggest you go looking for an endocrinologist. GPs tend to like to wait and see what happens.... which form experience is not a good thing and I'd say most people on this board would second that opinion!

No, test was done at the hospital endocrinologist. Public, West of Ireland, I'm made to feel like a complete hypochondriac so I'm usually rushing out the door. I don't know what the actual result was, do they have to give you a print out if you ask for it does anyone know?

lovelystuff

Amazingfun wrote: »

PPS: I do huge batches of brussel sprouts and bacon, sweet potato and roasts, etc, then I can just make lunches easily and heat them at work. It makes life WAAAAAY easier!

You're a lifesaver honestly thank you! My only worry really is that I'm quite light anyway (around 8 to 8 and a half stone) so I know I'm very lucky that I don't need to lose any. I think I need fat and bigger portions! I got the book ' your personal paleo code" which seems really good, it's just great to hear of someone in Ireland being able to stick to the diet. Fingers crossed tomorrow will be a better and less hungry day thank you again!

Amazingfun

Just an FYI, only free for another 16 hours

David Brownstein, MD

Holistic Options for Thyroid Disease and Cancer

Learn how iodine supports the thyroid gland and breast tissue
Is there a connection between thyroid cancer and low iodine?
Bromine, fluoride and other halides that hurt your thyroid gland
Clinical implications of adrenal dysfunction and your thyroid

Suzy Cohen
Suzy Cohen, RPh

Thyroid Healthy: Lose Weight, Look Beautiful and Live the Life You Imagine

Learn why “The Pill” makes you hypothyroid
How your menstrual cycle affects your thyroid and mood
The secret that makers of antacids and acid blockers don’t want you to know
The best lab tests that your doctor should have told you about but didn’t

Jill Carnahan
Jill Carnahan, MD, ABFM, ABIHM

The Autoimmune and Gut Connection to Thyroid Disease

How a “leaky gut” causes autoimmune diseases
The functional medicine approach to choosing nutrients that heal the gut
Lab tests that your doctor may not have told you about
How to prevent and treat Hashimoto’s and other autoimmune disorders

Tom O'Bryan
Tom O’Bryan, DC, CCN, DACBN

Gluten’s Effect on Your Brain, Thyroid and Body

A “grain of truth” about traditional and gluten-free muffins, bagels and pasta
A new way to evaluate gastrointestinal permeability
The value of vitamin D, probiotics and other nutritional supplements
Beware of cross-sensitivities like coffee and other surprising foods

Ben Lynch
Ben Lynch, ND

Folic Acid, Methylation and the Connection to Low Thyroid
The most important B vitamin to help thyroid and adrenal dysfunction
Why you should avoid folic acid and take natural folate supplements
Detoxification improves when you improve methylation with B vitamins
Why you may want to increase digestive acid, rather than reduce it

http://thethyroidsummit.com/ihljnfa/

Missymoohaa

Hi

New to this thread but unfortunately not new to Hypothyroidism. I have never been given results of my blood tests, just told what medication to take but I do remember some result being 6 when normal levels were meant to be 10.5 to 22, don't know what test.

After starting on 25mg of eltroxine daily, I am now on 150mg daily. I still am very overweight, suffer fuzzy head constantly and extreme fatigue.

As my husband remarked I do not over eat by any means (probably the wrong foods defnitely).

I am so used to feeling crap, I don't know what to do to feel better. I have read through this site (as many pages as I could) and lots of suggestions. But I just wondered if anyone has similar test results to mine and what did they do to improve their health etc. So much to take in, I'm overwhelmed to be honest.

I will definitely look up the Auto Immune Paleo diet, to see if it helps though.