Thyroid and your life!
mooie70
Posts: 70 Member
I know, I know, I've seen it hundreds of times on here. Those that are in total denial that thyroid related disease can have any effect on weight gain (or loss for that matter), but here it is.
I had a thyroidectomy in 1994. I developed Graves Disease (an auto immune disorder that attacks the thyroid gland) in 1992 during my pregnancy with my now 21 year old son. They ignored my symptoms and then treated me for PND (post natal depression) for over a year after he was born when I knew damn well I wasn't depressed (I was murderous! Hyperthyroidism is an over production of thyroid hormones that has a symptom list the length of my hallway). The ONLY benefit of Graves/Hyperthyroidism is that I lost heaps of weight whilst plotting who to kill next. Nothing is without it's benefits
Right...so fast forward 20 odd years later. In that time I gained 25 kilos in the first 6 months of having the thyroidectomy. I no longer had anything to metabolise what I was eating. After that I got on the diet merry-go-round and would lose some, and gain a whole lot more. We all know the story or we wouldn't be here...In the end I was close to 50 kilos overweight!
I was treated for anxiety, depression, a myriad of mental health disorders that I somehow kind of just knew I didn't have, but definitely had the symptoms for. I was never right. In the end I was put on disability because I can't work. My life has pretty much fallen apart and been to hell and back.
18 months ago I found a doctor who treats symptoms rather than blood work. I also joined a patient support group where I learnt all I needed to know, and was justified in my thinking about a lot of things I've had to put up with for 20+ years.
Listen to me. This is really important!!!
If you have had thyroid related problems in the past....hell even if you haven't! GO GET YOUR THYROID CHECKED/RECHECKED! But don't just assume the doctor knows what they are talking about. You have to be proactive here. Do your research first. Join the patient support groups who KNOW this stuff, and demand the RIGHT tests...
Those who are still having just TSH levels checked need to slap their doctors silly. At the very minimum, demand you have your Free T3 and Free T4 tested, and if you can afford it, get your reverse T3 done as well. And then get them to run Adrenal function tests. If you have been hypo OR hyper thyroid for years there's a good chance you will have Adrenal Fatigue. And get a printout of your blood work. Do not just accept if they say you are 'within range'.
If you have been taking a T4 medication since diagnosis, demand to be trialled on a T3 medication. It is so important! We do NOT all convert T4 to T3 and T3 is the hormone we need. T4 medications are:
Levo-T.
Levothyroxine Sodium.
Levoxyl.
Novothyrox.
Synthroid.
UNITHROID.
and here in Australia Oroxine, Thyroxine, and Eutroxsig or even L-thyroxine.
These do NOT always convert to the necessary T3 that our bodies need.
T3 medication comes in several forms. The original thyroid medication before Endos and doctors were being paid to push the synthetic T4 drugs came from pigs. Porcine. Dessicated pig/porcine thyroid is all natural, and it is the closest thing to human thyroid there is. Also known as NDT (Natural Dessicated Thyroid). If you can afford it, this is the best option as it replaces both T3 AND T4 in the right amounts.
Other T3 options include:
Armour
NDT
Cynomel
Cytomel
Tertroxin
Liothyronine (this can also come in slow release formula)
Compounded T3/T4 from a compounding pharmacy to your specific requirements
The reason I am writing this is because a couple of months ago I started Tertroxin. Here in Australia, Tertroxin is the only PBS T3 available, so instead of paying hundreds, I pay $6. I have lost so much weight since being on it...but that really isn't even the best thing. I feel like I am finally starting to get my life back. The anxiety, depression, constant need for sleep....all easing. The body tremors, and air hunger not nearly so bad.
I know T3 is not for everyone and I know synthetic T4 has worked for some. I also know that a lot of people assume 'this is the best I will ever be' on T4 when it can be so much better.
My advice is simple. Educate yourself. Join patient support groups and find people who KNOW about this. Find a doctor/Endo in your area who is receptive to treating you symptomatically and chucking the TSH test out the window (it's not even a thyroid test, it's a pituitary test!). Read, read, read! And empower yourself to get the answers you need.
The thyroid gland affects every single cell in your body. It's important that it's optimally treated.
For those who have suffered forever like I have, you have my heart and I hope you find your answers soon :flowerforyou:
I had a thyroidectomy in 1994. I developed Graves Disease (an auto immune disorder that attacks the thyroid gland) in 1992 during my pregnancy with my now 21 year old son. They ignored my symptoms and then treated me for PND (post natal depression) for over a year after he was born when I knew damn well I wasn't depressed (I was murderous! Hyperthyroidism is an over production of thyroid hormones that has a symptom list the length of my hallway). The ONLY benefit of Graves/Hyperthyroidism is that I lost heaps of weight whilst plotting who to kill next. Nothing is without it's benefits
Right...so fast forward 20 odd years later. In that time I gained 25 kilos in the first 6 months of having the thyroidectomy. I no longer had anything to metabolise what I was eating. After that I got on the diet merry-go-round and would lose some, and gain a whole lot more. We all know the story or we wouldn't be here...In the end I was close to 50 kilos overweight!
I was treated for anxiety, depression, a myriad of mental health disorders that I somehow kind of just knew I didn't have, but definitely had the symptoms for. I was never right. In the end I was put on disability because I can't work. My life has pretty much fallen apart and been to hell and back.
18 months ago I found a doctor who treats symptoms rather than blood work. I also joined a patient support group where I learnt all I needed to know, and was justified in my thinking about a lot of things I've had to put up with for 20+ years.
Listen to me. This is really important!!!
If you have had thyroid related problems in the past....hell even if you haven't! GO GET YOUR THYROID CHECKED/RECHECKED! But don't just assume the doctor knows what they are talking about. You have to be proactive here. Do your research first. Join the patient support groups who KNOW this stuff, and demand the RIGHT tests...
Those who are still having just TSH levels checked need to slap their doctors silly. At the very minimum, demand you have your Free T3 and Free T4 tested, and if you can afford it, get your reverse T3 done as well. And then get them to run Adrenal function tests. If you have been hypo OR hyper thyroid for years there's a good chance you will have Adrenal Fatigue. And get a printout of your blood work. Do not just accept if they say you are 'within range'.
If you have been taking a T4 medication since diagnosis, demand to be trialled on a T3 medication. It is so important! We do NOT all convert T4 to T3 and T3 is the hormone we need. T4 medications are:
Levo-T.
Levothyroxine Sodium.
Levoxyl.
Novothyrox.
Synthroid.
UNITHROID.
and here in Australia Oroxine, Thyroxine, and Eutroxsig or even L-thyroxine.
These do NOT always convert to the necessary T3 that our bodies need.
T3 medication comes in several forms. The original thyroid medication before Endos and doctors were being paid to push the synthetic T4 drugs came from pigs. Porcine. Dessicated pig/porcine thyroid is all natural, and it is the closest thing to human thyroid there is. Also known as NDT (Natural Dessicated Thyroid). If you can afford it, this is the best option as it replaces both T3 AND T4 in the right amounts.
Other T3 options include:
Armour
NDT
Cynomel
Cytomel
Tertroxin
Liothyronine (this can also come in slow release formula)
Compounded T3/T4 from a compounding pharmacy to your specific requirements
The reason I am writing this is because a couple of months ago I started Tertroxin. Here in Australia, Tertroxin is the only PBS T3 available, so instead of paying hundreds, I pay $6. I have lost so much weight since being on it...but that really isn't even the best thing. I feel like I am finally starting to get my life back. The anxiety, depression, constant need for sleep....all easing. The body tremors, and air hunger not nearly so bad.
I know T3 is not for everyone and I know synthetic T4 has worked for some. I also know that a lot of people assume 'this is the best I will ever be' on T4 when it can be so much better.
My advice is simple. Educate yourself. Join patient support groups and find people who KNOW about this. Find a doctor/Endo in your area who is receptive to treating you symptomatically and chucking the TSH test out the window (it's not even a thyroid test, it's a pituitary test!). Read, read, read! And empower yourself to get the answers you need.
The thyroid gland affects every single cell in your body. It's important that it's optimally treated.
For those who have suffered forever like I have, you have my heart and I hope you find your answers soon :flowerforyou:
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Replies
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I drank radioactive iodine for my thyroid about 22 years ago. Before that I was hyperthyroid. Boy could I eat then and never gain a pound. Since the iodine I have had extreme difficulty losing any weight. They have switched my medication 4 or 5 times, but normally put it back to the original dosage. My doctor only sends me for the blood test to check my TSH levels. I will definitely be requesting further tests at my next visit.
Thanks for the information!!0 -
Seriously, the TSH test means nothing in the grand scheme of things. There are so many things a person SHOULD be tested for. When my doctor got serious about this there were 2 pages of tests. And they all matter because they are all things related or affected by ongoing Thyroid disease.
In Australia our soils are so depleted that the general public is low if not deficient in Iodine and most don't even know it.
I've learnt the value of vitamin/mineral supplements that I always scoffed at before. They have helped me so much. I was told for so long that I was 'in range' that I had forgotten how it felt to actually feel good. Or be healthy. It's such a difference now.
All the best hon xI drank radioactive iodine for my thyroid about 22 years ago. Before that I was hyperthyroid. Boy could I eat then and never gain a pound. Since the iodine I have had extreme difficulty losing any weight. They have switched my medication 4 or 5 times, but normally put it back to the original dosage. My doctor only sends me for the blood test to check my TSH levels. I will definitely be requesting further tests at my next visit.
Thanks for the information!!0 -
Thanks for such a good explanation! I'm keeping this thread!0
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I agree completely. I've been through the same hassle. It took so many years just to get medical cooperation at all. You have to practically stand on your head to get them to look at all the thyroid indicators. I have finally gotten it done though. I tried synthetic levothyroxine and it did not work for me. Only upon getting natural Armour Thyroid (this is a USA brand) did I at all get back to normal and become able to lose weight through diet and exercise again.0
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I am a recovering Graves sufferer, also. What you have said is SPOT ON. Doctors do not know what they are doing when it comes to thyroid issues. There is a Facebook support group called 'Graves Disease - Research News' where good sound medication related advice can be found. My own story is that I was on ATD's for a year ending up severely hypothyroid. My doctor would barely order tests and was pushing me for thyroidectomy. So I turned to a nutritionist for help. She put me on a plan that I stuck to diligently for 3 months, and which set me back on my feet. No more phone paranoia! No more dead to the world fatigue. The roller coaster ride of Graves, emotionally, is quite an ordeal. It's been 2-1/2 years and I'm still medication and symptom free. You can beat Graves. Don't stop looking for solutions.0
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Same for me, I have Hashimoto's and do well on Armour or Naturethroid, but not the synthetic stuff. Some of us cannot convert the T4 to T3 well enough, that is the ;problem. Even when I tried Thyrolar (years ago) which is synthetic T3/T4 combination, it still didn't work nearly as well. Natural (dessicated) thyroid like Armour and Naturethroid also have T2, which is tied into ATP, which is cellular energy, that is probably why. You need to convert the T4 to T3 to use it, T3 is the active thyroid hormone your body actually uses. If it doesn't convert and T4 just floats around in your body but does nothing, your blood tests look good but you feel like total crap and still have your symptoms.I agree completely. I've been through the same hassle. It took so many years just to get medical cooperation at all. You have to practically stand on your head to get them to look at all the thyroid indicators. I have finally gotten it done though. I tried synthetic levothyroxine and it did not work for me. Only upon getting natural Armour Thyroid (this is a USA brand) did I at all get back to normal and become able to lose weight through diet and exercise again.0 -
Oh wow...we can all learn something from others. I just learned from you that the phone phobia I've had for 20 years is probably due to this as well. Bizarre that you even mentioned it but so cool!I am a recovering Graves sufferer, also. What you have said is SPOT ON. Doctors do not know what they are doing when it comes to thyroid issues. There is a Facebook support group called 'Graves Disease - Research News' where good sound medication related advice can be found. My own story is that I was on ATD's for a year ending up severely hypothyroid. My doctor would barely order tests and was pushing me for thyroidectomy. So I turned to a nutritionist for help. She put me on a plan that I stuck to diligently for 3 months, and which set me back on my feet. No more phone paranoia! No more dead to the world fatigue. The roller coaster ride of Graves, emotionally, is quite an ordeal. It's been 2-1/2 years and I'm still medication and symptom free. You can beat Graves. Don't stop looking for solutions.0
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I'd add something to what you said. Too much T4 doesn't necessarily just float around and it's not expelled by the body. Too much T4 can actually give you hypER symptoms, whilst also being hypO from lack of T3. This is the mess I've found myself in for years. I just wasn't right, so doctors over the years just kept increasing the Thyroxine T4 I was taking until I was on a high dose, my T4 was high, my TSH was low and nobody even checked for T3??? So for many years I have been having both hypER and hypO symptoms at the same time. I remember over 15 years ago asking if I could possibly be Bipolic. Interestingly I've read recently that untreated thyroid diseases can actually be misdiagnosed as Bipolar. How incredibly scary is that? In this day and age it's an abomination that people are being left to deal with this nightmare and that the research just isn't happening.Same for me, I have Hashimoto's and do well on Armour or Naturethroid, but not the synthetic stuff. Some of us cannot convert the T4 to T3 well enough, that is the ;problem. Even when I tried Thyrolar (years ago) which is synthetic T3/T4 combination, it still didn't work nearly as well. Natural (dessicated) thyroid like Armour and Naturethroid also have T2, which is tied into ATP, which is cellular energy, that is probably why. You need to convert the T4 to T3 to use it, T3 is the active thyroid hormone your body actually uses. If it doesn't convert and T4 just floats around in your body but does nothing, your blood tests look good but you feel like total crap and still have your symptoms.0
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Thank you for posting this. I am newly diagnosed as hypothyroid and just in the last couple weeks put on Synthroid. While the scale continues to climb my energy is dropped off the face of the earth. While I was able to competively bicycle for 3-5 hrs before diagnosis, I am now napping every.single.day, sluggish and slow whenever I do try to bike. (Tho I do believe slow on the bike is from the excessive weight gain).
It is all so very discouraging. Horribly depressing. Painfully embarrassing.
I shall ask the doctor about the other testing in addition to what he's done already. While I do believe he is a decent endo doc, I know this is a "teaching" hospital that he works in and anything out of the ordinary for testing is acceptable practice.0 -
MFP has a hypothyroidism & hyperthyroidism group: http://community.myfitnesspal.com/en/group/753-hypothyroidism-and-hyperthyroidism0
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I would really like to keep this thread somehow.... ??0
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I'm suspecting I have some tyroid problems, and some deficiencies. But my doctor explained to me the present (above 300) anti-tg is from a recent virus infection I never noticed (and which doesn't show up in various blood tests). Viamin B12 is fine, thus there's no reason to test holo-tc or other simiar things as the normal B12 test was within range (just above 300, and over 100 down from 2 months ago), I need to take high dose B3 but there's no need for testing or supplementing zinc, etc... extremely low storage iron (2 months ago, and somewhat filled up now) and enlarged red blood cells (still enlarged) might indicate B12 deficiency or thyroid problems, but this doctor doesn't seem to care.
I'm seriously annoyed, and all the time I have masses of symptoms that would fit to both hypo- and hyperthyroidism, and other things. Including very rapid weight loss (I'm having rapid loss episodes for years now, but they never lasted more than 2-3 weeks before), tingling and numbing limbs, bad concentration, tiredness vanished by taking iron at least, always freezing, weak knee muscles, pale look, dry cold skin, dry hair and hairloss, and a pile more.
I just wish I'd find a doctor who actually listens to me *sigh*
</rant>0 -
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Thanks for sharing this information and letting us know how to bookmark it
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Mooie70, you are my hero! Thank you so much for posting this amazing information.
I'd just like to add some additional information for those in the US:
A good endocrinologist will adjust your dosage(s) based on both your levels and on symptoms.
You have three treatment options:
• Armour (dessicated pig or pig & cow thyroid glands)
• Synthroid (levothyroxine), which is synthetic T4
• A combination of Synthroid & Cytomel (liothyronine), which is synthetic T3
Endos in the US are highly resistant to both Cytomel & Armour, so it's really important that we educate ourselves and ask questions. It took me a year & a half to persuade my doctor to prescribe Cytomel—even though my T3 was super low. And my quality of life is so much better now. Do not give up!0 -
Happy New Year everyone. Don't give up if you've just had a blow out over Xmas. I'm back on the bandwagon tomorrow. Just weighed in, and taken measurements. Only someone with no thyroid can understand putting on 8 kilos in 2 weeks! But for the first time in my life I am past beating myself up about it. Off we go again 0
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I'm in Australia too and I'm in the waiting room of the blood test place as we speak. I'll be getting tested for FBE, E/LFTs and TSH I'm hoping I'll get some answers. Your symptoms sound just like me! Anxiety, depression, overweight etc0
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