Wed 22 Jan, 2014 10:32 am
I was diagnosed with Graves' Disease back in 2003. I've been around the block a few times and I know this is a confusing disease that many doctors just don't educate their patients about. I hope that by posting here someone can find the information they are so desperately seeking and may find the motivation to do their own research. I spent a long time reading and talking to people to gather as much information as I could before making any decisions regarding my health. I hope that my story can help someone else.
I welcome valuable insight into your life, symptoms and treatment if you've been diagnosed with GD. Or even if you are simply hyper or hypo thyroid. There is little education on the lab work and the tests necessary to properly treat a patient and many end up feeling terrible while they are told they are "ok".
I struggled for 2 years to find what was wrong with me. It started as simply as being more hungry than usual. I felt "sped up". I was tired all the time. Then the tremor started. And the weakened muscles. I couldn't climb the stairs. I began having diarrhea all the time and vomiting after almost every meal. I lost so much weight and was so sick I nearly passed out during the photos at my wedding. My heart rate was fast and irregular. I was tested for everything. Except thyroid. I got a new PCP and he did a full thyroid workup. This showed I was massively hyperthyroid and also that I had Graves Disease. There are many other symptoms of Graves' disease that affect the body, eyes and skin. A quick google will get you all of them.
Graves Disease is hyperthyroidism. But the difference between hyperthyroidism caused by something else is that Graves' patients have an antibody. GD is an autoimmune disorder. The body creates antibodies that attack the thyroid making it produce more and more hormone.
A normal healthy thyroid produces thyroixine (T4) when the pituitary gland sends a signal to it via TSH (thyroid stimulating hormone). When the thyroid has produced the correct amount, the pituitary gland stops producing TSH. T4 is then converted to triiodothyronine (T3). T3 is the hormone that is used by every cell in our bodies. T3 is probably the single most important hormone in us because it regulates everything. Without it, your brain doesn't function properly. Your metabolism shuts down. Your muscles and joints can hurt. Nothing runs right.
In hyperthyroid person, the TSH on a lab will be very low while the T4 and T3 will be very high. In a hypothyroid person, the TSH will be very high while the T4 and T3 will be very low. In Graves' patients, there is also the addition of the thyroid- stimulating immunoglobulin antibody (TSI) which causes the dysfunctional thyroid. There is a separate antibody for Hashimoto's Disease (the opposition of Graves causing hypothyroidism). TSI will be present in those with active GD. You can still have Graves and not have the antibodies in your blood. Graves can and does go into remission. The only way to diagnose it though is to have antibodies present. GD is hereditary. Graves can be treated but there is no cure. Please do not let a doctor tell you a treatment will cure you. You can get rid of the symptoms but you cannot get rid of the antibodies. More on treatments in a bit.
When being tested for thyroid issues, it's important to have the Free T4 and Free T3 done. T4 and T3 alone do not give accurate information as to the status of the thyroid health.
A lab for a "normal" person looks something like this.
FT4 - 1.5 (0.8 - 1.8 ng/L)
FT3 - 3.9 (2.3- 4.2 pg/mL)
TSH - 1 (0.5 - 4.70 µIU/mL)
TSI - 0-1.3 (>1.3 )
A lab for a hyperthyroid person with or without Graves Disease might look like this:
FT4 - 9.8 (0.8 - 1.8 ng/L)
FT3 - 13.5 (2.3- 4.2 pg/mL)
TSH - .0002 (0.5 - 4.70 µIU/mL)
And a lab for a hypothyroid person with or without Hashimotos or Graves Disease might look like this:
FT4 - .03 (0.8 - 1.8 ng/L)
FT3 - 1.3 (2.3- 4.2 pg/mL)
TSH - 11.5 (0.5 - 4.70 µIU/mL)
Please note that being within range doesn't mean you feel good. For most people, the higher end (as I posted in the "normal" labs) is the ideal place to be.
The first time I was diagnosed in 2003, the endocrinologist immediately wanted me to treat it with Radioactive Iodine (RAI). I didn't know anything about Graves or hyperthyroidism or RAI. I said ok. Then I started to do a little homework. RAI is poison.
It is a pill that you swallow that contains radioactive material and iodine. Since the thyroid is the main part of the body that takes up iodine, the RAI is carried from your stomach straight to the thyroid where the radioactive material slowly kills the thyroid cells. I was told that the thyroid is the only part exposed to the radiation and that it wouldn't harm the rest of me. I called bullshit on that. Here's why.
I was told that I was not to be in close contact with anyone (within 3 feet) for up to 7 days. Do not hold babies. Do not share a toilet and flush 2-3 times after you use with the lid down. Do not prepare food for anyone other than yourself. Wash all linens and clothes separately. Do not share a bed with anyone for 3-5 days. No kissing or hugging. If you are traveling, request a card from your doctor to let the security know you have taken RAI as to avoid setting off the detectors.
This says to me that RAI is present in EVERY cell of my body.
There are circumstances in which RAI is necessary. Such as cancer. It is a risk versus reward question and without fail RAI wins over cancer every time. But for a treatment of Graves' it is simply ridiculous. You kill the cancer with RAI. You do not kill the Graves' with RAI.
There are many documented cases of people who have side effects from RAI that the doctors swear are not from RAI. However, it is a dose of chemo so you do the math.
When I finally declined the RAI treatment, my doctor told me I was stupid and would fail with the antithyroid medications. I got a new doctor and started the antithyroid treatment. I went into remission for seven years.
In 2012, the Graves' reappeared and this time it came back more quickly and more harshly than before. I got sicker, faster. I knew in my heart that every time the Graves' reactivated I would damage my body further. So I opted for surgery to remove the thyroid.
Please understand that by removing the thyroid it is not curing the Graves'. It's simply removing the part of the body that is affected by the Graves' so as to eliminate the symptoms. A complete thyroidectomy is not something to take lightly. You might eliminate the symptoms but you are also eliminating the one source of T4 in your body. A complete thyroidectomy means hormone replacement for the rest of your life. It means trading hyperthyroidism for hypothyroidism. However, finding the right doctor can make maintaining your hypothyroidism easy.
There are currently two ways to treat hypothyroidism caused by lack of a thyroid. Synthetic hormone (Synthroid) and natural desiccated porcine thyroid (Armour). Synthetic hormones contain only t4 and rely on your body's ability to convert it to T3. If you are not converting it well, you will still feel hypothyroid. This is why it is massively important for your doctor to dose you based on Free T4 AND Free T3. TSH can be an indicator of hypothyroidism because your pituitary gland is still detecting T3 in the system and it is still functioning properly but since there is no thyroid to talk to TSH is a test that can be done without. Free T4 only tests work only if you are feeling good while within range. If you are felling poorly and your doctor pulls a Free T4 only and you are within range, he or she will probably tell you that you are fine and that it is something else. And many times it is simply that yes, your T4 IS at a great level but your Free T3 is low because your body is failing to convert properly. If this is the case you have two options. You can add a synthetic T3 pill to the mix. Or you can opt for the natural desiccated thyroid.
NDT treatment is controversial to many doctors and many won't prescribe it. But it is basically the ground up thyroid of a pig. It contains T4, T3, T2 and T1 (as well as some other thyroid related hormones) which more closely match the human thyroid production. Some people report it is the only thing that keeps them feeling normal.
The best thing that someone with Graves' can do is research. Research until your eyes bleed and until you can recite back and forth all the things you need to know to make sure you're being treated properly. The thyroid is vital to your health.
Make sure you are your own advocate because if you aren't, you may not have anyone on your side.
First off, I'm glad you're back, and I hope you're feeling better.
Checking in from Hypo/Synthroid Forever Land.
Welcome home, Bella.
Sorry to hear of your battle with your thyroid. My brother was diagnosed with Hashimoto's thyroid
about two years ago and has also had to be his own researcher and advocate. He was the one who finally matched all his symptoms with the disease and demanded he be tested. When it was confirmed, his doctor congratulated him, saying he'd not ever have thought of the possibility.
My brother had problems with the medication. Apparently there are big differences between the brand and generic versions and you have to be very vigilant about what you are getting.
When he was diagnosed, I sent him this book. He and his doctor have gotten some good info from it, including the info about the differences in the medication.
Thanks guys! Yes, I did forget to mention the difference between medications. I am currently on Tirosint because there are no fillers. I've heard many times that the Brand Synthroid is better than the generic.
Many times the brand name is better, even as the FDA goes and gives its nod to the generic. This causes problems when prescription plans are fond of the less costly and it's important to always remember to remind the doctor to make it clear on the prescription to only give the brand as written.
Welcome back, Bella! It's so good to see your name pop up onscreen!
I'll pull up a chair in the hypo section. I had thyroid cancer almost 20 years ago. I had a complete thyroidectomy then RAI to kill any leftover thyroid cells because the type of cancer I had only originates in thyroid cells. By eliminating every bit of thyroid tissue, I had a 99-100% chance of no recurrence. It worked.
Re: Synthroid... I've been on full replacement ever since, and I haven't had any problems with it or the generic. On the contrary. I had been low all my life without realizing it, and I don't have all those pesky symptoms any more. I can definitely tell if I forget my daily pill! About halfway through the next day, I crash. I make sure that doesn't happen on a regular basis!
The thyroid is a complex gland and most doctors only test for a few of the many hormones they need to get a clear picture. The reason for this is that they treat the many different kinds of hypo/hyper thyroidism the same so it doesn't really matter to them the nuances of all of the chemistry. Problem with that is the treatment doesn't work for a lot of people. Check out this site: http://www.thyroidbook.com/
Dr. Kharrazian deals mostly with HYPO thyroidism, because it is most prevalent, but I know he does work with hyperthyroid cases too. Might be worth a look.
Best of luck to you!
ps... most doctors treat all autoimmune diseases the same too although there are many different mechanisms that can lead to autoimmunity.
Like I always say, THE INTERNET IS OUR BEST FRIEND for researching whatever ailment we've got, and we end up knowing as much about it as the doctors and can keep tabs on whether they're diagnosing and treating us correctly.
Also there are very useful net discussion groups where people with the same condition can get together to talk about it and compare notes..
I haven't got hyperthyroidism (overactive thyroid) , I've got the other one- hypothyroidism (underactive thyroid), note the subtle spelling difference 'hypo'.
My doctor ran blood tests which showed my thyroid was "borderline underactive", it's not serious so he won't prescribe thyroxine or anything else, but I find using non-fluoride toothpaste helps.
A grapefruit now and again also helps (there must be something in it that my thyroid likes)
Basically the condition makes me sometimes feel cold and sluggish like a cold-blooded reptile but fortunately I live at the seaside and can bask on warm rocks along the seafront in summer.
I get cold a lot.
I've become the resident thyroid expert among my friends. Hours spent reading and figuring out what the hell whatever I'm reading means.
My doctor has been pretty good but I keep her on her toes, that's for sure.
I feel so bad for you.
Maybe you should find another doctor. From what I've seen, most people are at their best when in the higher range of "normal" with their T4 and T3 and around 1 with TSH.
Being "borderline hypo" with symptoms means your hypo. That stinks.
Bella said: @RF- Maybe you should find another doctor.....Being "borderline hypo" with symptoms means your hypo.
It was about 4 years ago when I consulted my doctor and basically I agreed with him otherwise I'd dump him quick!
When he said my blood tests revealed a borderline underactive thyroid, I said to him "Can you prescribe thyroxine?", to which he replied "I don't want to at the moment in case it makes your thyroid shut down completely and you'll be reliant on thyroxine for the rest of your life. Let's leave it for a while to see if your thyroid improves without medication"
And the good news is it DID improve on it's own, possibly because I switched to non-fluoride toothpate after hearing on the net that there may be a link between fluoride and thyroid problems. I also eat a grapefruit every few weeks which seems to help and I'm fine and dandy, a whisker above borderline.
But sometimes I seem to briefly drop into the borderline zone again and have to put on an extra pair of thick woolly socks to keep my feet warm, but I can live with it..
Well if you feel good, then you feel good! Yea for you!!
One of the first signs of a thyroid disorder in humans ( not mentioned so far on this thread ) is depression.
In Poodles, there are many signs of thyroid disorder, one of the most pronounced being numerous ear infections ( usually yeast ) besides various skin problems.
Incidentally my 76-yr-old mother died in 1999 when her thyroid packed up; she'd been showing signs of mental confusion and slurred speech for a week before, so the doctor booked her into hospital.
They gave her thyroxine which rallied her round a bit but she relapsed and died 5 days later of 'myxodaemia coma and complications' according to her death certificate.
We think the 'complications' were caused by her earlier accidentally overdosing on paracetamol at home in her confused state in an attempt to cure herself.
Oh well, she had a good innings..
Yes, Poodles and one of the meds is a Brand of levothyroxine.
It is always best to see an endocrinologist vs a general practitioner. Most practitioners are not up to date on new criteria. The new guidelines for normal thyroid function are 0.2-2.0 (Int. Hormone Society). Generic drugs can not be as precise as name brand drugs because the amounts of the drug are in micrograms. I felt poorly for many years with symptoms/signs such as fatigue, alopecia, joint pain, constant sore throats, feeling of fullness in my throat, and multiple miscarriages. I saw 2-3 GPs who never checked for anti-thyroid antibodies and merely told me I was probably depressed. Each of them prescribed anti-depressants(which I never filled) even though I told them I didn't need them. I was referred to an endocrinologist(thank goodness) for insulin resistance . He found I had Hashimoto's thyroiditis and thyroid cancer which had spread to my lymph nodes. I had a TT and radioactive iodine. I'm in remission as of this year.
Germlat said: I saw 2-3 GPs.. Each of them prescribed anti-depressants(which I never filled) even though I told them I didn't need them.
Same here, when I went to my first young lady doctor it went like this-
ME- "I'm cold and sluggish half the time"
HER- "You're depressed"
ME "No, I'm just cold and sluggish"
HER- "I'll prescribe anti-depressants"
ME- "No thanks I'm not depressed"
HER- "I'll prescribe them anyway"
So I picked them up from the chemist and tried a few as an experiment but they were no good at all and made me feel woozy as if I was on another planet unable to think straight, so I flushed the rest down the pan and was glad to get my brain back when my head cleared..