The information below is from both my personal opinion and information obtained from various websites and medical research articles. The full articles can be found under the Resource tab which provides a list of specific catagories relating to Graves Disease. Please email me if you are unable to find the source relating to information provided.
Please remember.... Not every person will experience the same symptoms nor will they experience the same degree of symptoms. We may share similar symptoms but we all have our own journey to travel.
This Category has no FAQ yet
This Category has no FAQ yet
Thyroid Eye Disease (TED)
This Category has no FAQ yet
This Category has no FAQ yet
Anti-thyroid Drugs (ATD's)
This Category has no FAQ yet
Thyroidectomy Surgery (TT)
This Category has no FAQ yet
Iodine-131 Radioactive iodine (RAI)
This Category has no FAQ yet
You are not alone!
This Category has no FAQ yet
Graves' Disease is an auto-immune disease that targets the thyroid. The immune system mistakes a healthy thyroid for one that is under attack. As a result, instead of healing the thyroid, the antibodies trigger the thyroid to produces too many hormones. Overtime the thyroid and antibodies struggle back and forth – more antibodies mean more hormones causing hyperthyroidism.
The thyroid is shaped as a butterfly located under the voice box in the front of the neck. It’s often referred to as the battery for the body because the thyroid hormones provide the energy that controls/regulates just about every part of the body.
In most cases the cause is from one of the follow:
• Hereditary (usually something triggers the GD to become active)
• Serious illness
• An extremely stressful event (i.e., death, divorce, life threatened)
• Serious hormonal imbalance
• Energy Drinks (long term use or could be a trigger)
• Under a huge amount of stress dealing with an important issue, employment, family, etc...
With Graves’ Disease, something usually causes the thyroid to produce a sudden and unusually high levels of hormones. As a result, the antibodies think the thyroid is under attack and try to save the thyroid. Once the event has passed, the antibodies continue to attack the thyroid which causes the thyroid to continue to produce those high levels of hormones.
It’s really a vicious cycle. Anxiety, nervousness, hot flashes, heart palpitations slowly get worse overtime and that causes the antibodies to become even more aggressive in their attack to save the thyroid.
Doctors... Doctors and more Doctors
Make an appointment with an Endocrinologist who specializes in Graves Disease. You may want to consider meeting with a second Endocrinologist. Keep in mind you are interviewing a long term doctor. Graves Disease can be difficult journey and it's important to feel comfortable and confident with your doctor.
Discuss all treatment options with your doctor. ATDs, RAI and surgery. In my case, I had severe symptoms with a large goiter by the time I was diagnosed it was too late for any chance of remission. My primary care doctor referred me to a thyroid surgeon. I met my first Endo after my surgery.
Doctors typically prescribe Anti-thyroid drugs for about 6 months to a year. If the symptoms continue to get worse then the doctor usually discusses surgery or RAI to remove the thyroid. Once removed, your body will need time to adjust from hyper levels back to normal and heal from the thyroid wreaking havoc.
You will also want to schedule an appointment with your Gynecologist, Dentist and any other doctor you have treated with over the last year to bring them up today with your Graves Diagnosis. Make sure all necessary papers are signed so that all your doctors can discuss your medical history and treatment with each other.
Where to begin?
1) Wrist Blood Pressure Cuff: easy to use and so important to monitor your blood pressure. Discuss with your doctor how and when your blood pressure should be taken and the ideal blood pressure for you. See: Average Blood Pressure by Age
2) Fingertip Pulse Meter: A quick and easy way to know if you are over doing it and need to rest. Ask your doctor for specific ranges for your resting heart rate, exercising and doing day to day activities - good, bad and really bad. Discuss a plan with your doctor so you know at what point you contact his office and when to seek immediate attention. With that said, a pulse meter will not help if a person is living every moment with a pulse meter stuck to their finger. The average resting heart rate is between 60-80 beats per minute. See: Target Heart Rate
3) Rest & Relaxation: It's so important to take "Me Time!" When life seems to spiral out of control be prepared with a list of things that will help get through the difficult moment such as, crochet, cross stitch, hot bath, books, paint, listen to music and, if nothing else works, just staring at a blank wall really does help to clear the mind.
4) Simply Life: Do yourself a favor and simply your life back to the very basics to give your mind and body a chance to heal and adjust from hyper back to normal. Don't stress about housework or evening meals. Try to avoid making commitments, do less during the holidays and birthdays. Chances are good by the time a person is diagnosed life is a bit crazy. Stress increases hyper symptoms and feeds the thyroid that produces the hormones which is the last thing you want.
In my own personal experience, I came to rely on my pulse rate as a sort of way to monitor my TSH and medication in between my lab work appointments. If my heart rate (pulse) was consistently above normal then chances were good that something was off and I needed a medication adjustment. I have no clue if there is any medical evidence to support the correlation and I don't know if it would work for everyone but it did give me a peace of mind and I felt more in control of my health.
Other than the obvious standard thyroid lab work of TSH, Free T4 and Free T3, everyone should ask their doctor to check a few more things:
* TRAb - Graves' antibodies test
* Vitamin D and B12
* Cholesterol - Have your cholesterol checked on a regular basis. Hyper usually causes low cholesterol but after treatment the cholesterol can rise significantly.
Keep a daily journal and help your doctor help you!
Regardless of where you are in your journey with Graves Disease, it's very important to keep a daily journal. Every symptom can be related to Graves but not all symptoms are directly related to Graves.
An example would be fatigue, poor concentration and joint pain. Those symptoms are common with Graves and will most likely resolve once the thyroid levels are within range. However, those same symptoms can also be related to something else such as low Vitamin D.
Your daily journal should include things such as:
Time you take your medication
Daily Nutrition - what you had and how much
How much water you drink
Daily Stress - high, low, average
Daily Exercise - note if you had a very active day
Symptoms – physical and neurological
Good day/Bad day
A daily journal will help you to notice patterns of what triggers specific symptoms that could be related to your diet, stress or sleep cycle. The more specific you can be in providing your doctor with a list of symptoms and the severity of those symptoms the better chance your doctor can accurately diagnose and treat you.
Click to see all Thyroid Journals
Graves Disease/Hyperthyroidism causes the symptoms so it’s virtually impossible to treat a symptom without first treating the cause. Once the thyroid is treated and the levels are within optimal range the body then needs time to heal and adjust from hyper back to normal levels. Here are some tips for managing the symptoms and getting through those bad days:
Exercise, Yoga or Zen
Power naps are awesome!
Take "Me Time!" (read, paint, crochet, cook or a nice hot bath)
Plug in that Ipod and blast it with your favorite music!! Make a special play list just for those really bad days.
Hair loss - a very common symptom of Graves because. Hair growth depends on a balance of things such as vitamins, nutrition and hormones. Taking a specific vitamin like Biotin or consuming a power food may help to “manage” the symptoms of hair loss but, during the hyper state, the thyroid will always win. Once the thyroid levels are at optimal range, your body will then slowly return to a balance state. Have patience, there are a lot of parts that need to heal and adjust from hyper back to normal levels - the heart is first and hair growth is somewhere at the bottom of the list.
When it comes to friends and family members, I have found that sometimes telling a small white lie is a bit easier than the truth. Instead of telling someone you're having another bad day, it may be easier to simply say that you have a really bad headache or stomach ache. It's hard for friends/family to understand something that we don't even understand half the time. It's frustrating for not just us but for our loved ones too.
Most people are either Pro RAI or Pro Surgery. Below is just one perspective. The most important thing is to do your homework, ask questions, talk with your doctor and feel confident in your decision.
ATD’s are the first and preferred method of treatment with the goal of remission. Most people diagnosed early have the best chance of successfully treating the thyroid and achieving remission - which could last for weeks, months or many many years. Most doctors will try to reach optimal thyroid levels with ATD's for about six months before discussing the option of RAI or surgery. It really depends on how severe the symptoms are and each person is different.
Most people who have an easy time with RAI are those who were diagnosed early with mild symptoms, no goiter and no signs of Thyroid Eye Disease (TED).
The amount of RAI the doctor prescribes will determine how long you will need to stay away from family, friends and pets - typically it’s a week. Advanced preparation is needed to prevent contamination. Most people I've talked to have said, the worst part of seclusion was not getting a hug when they needed it the most.
With RAI, the transition from hyper to hypo usually takes about three months but it can take longer. During the first few months there are a few hormonal ups and downs because the RAI is destroying the thyroid slowly. Once the person reaches a hypo state they can start thyroid replacement medication. In some cases, it does take more than one round of RAI treatment to destroy the thyroid. Each person is different so there is no absolute answer.
The thyroid is completely removed and there is no waiting period before beginning thyroid replacement medication. I have a very low tolerance to pain and, other than a sore throat the first day, recovery was fairly easy. In no time the scar is nothing more than a thin line. With all surgeries there is the chance of complications which should be discussed with your doctor.
There are a few hormonal ups and downs while trying to find the perfect dose of thyroid replacement medication but everyone goes through that with both surgery and RAI.
The doctor will send a biopsy of the thyroid to make sure there are no cancer cells. Of course, RAI should destroy any cancer cells but, unless you have a biopsy before RAI, I don't believe there is a way to know if cancer is a concern.
All-Natural or Holistic Treatment
I am personally not a fan of any kind of natural or holistic treatment. I don't know of any doctor who will treat a patient with Graves' Disease or any thyroid condition who has chosen the all-natural or holistic approach. Only a medical doctor can order routine lab work and that is an absolute must for treatment and to prevent serious health problems.
Naturopathic physicians who are medical doctors may be an option. However, not many insurance companies will pay the claims so it can get very expensive. It's really important to check the credentials of the Naturopathic physicians on the American Association of Naturopathic physician’s website or your countries association.
Graves Disease can be disabling and you may qualify for benefits if your condition has limited your major life activities such as: sleeping, concentration, anxiety, comprehension, communication, vision impairment and difficulty standing for long periods of time.
Just stating you have most of the symptoms will not qualify for disability. It's very import that you are sharing all your symptoms and health concerns with your doctor(s). The final determination will be made from your medical records and any medical opinions requested from your doctor(s).
SSD Social Security Disability
FMLA Family Medical Leave Act
ADA Americans with Disabilities Act,
ADAAA The Americans with Disabilities Act Amendment Act passed by Congress in September 2008
For more information and links to the websites see the Employment, Disability and Assistance under the Resources tab.
Case Law regarding wrongful termination:
2011 WL 2149061 (N.D. Iowa June 1, 2011). Plaintiff, an on-air radio personality employed by a company that operated seven stations, alleged that he was denied accommodation and terminated in violation of the ADA after he informed several members of management at Three Eagles he had a “blood disease” and would require occasional time off, and sought but was denied transfer to one of several available afternoon shifts because side effects of his medication included early-morning drowsiness, confusion, and slurred speech. Seim further alleged that the disease makes standing for prolonged periods painful, but that his request for a chair (broadcasters typically stood during their on-air programs) was also denied. On the question of whether his Graves’ Disease and the side effects of medications he uses to treat it rendered him an individual with a disability, he alleged that he was substantially limited in the major life activities of sleeping, standing, speaking, concentrating, thinking, communicating, working, and the functions of his immune, circulatory, and endocrine systems, noting various symptoms of the disease, including rapidly deteriorating vision, weight fluctuation, insomnia, narcolepsy, anxiety, swelling and skin lesions of the lower extremities, and difficulty standing for long periods of time. The Court denied the employer’s motion for summary judgment on the issue of whether Seim is an “individual with a disability,” ruling under the ADAAA that a reasonable jury could find that Seim was substantially limited in these major life activities.
It’s true that the thyroid is simply the victim but, unlike with MS, Lupus and Diabetes; if remission is not possible the thyroid can be removed which will reduce the antibodies and the overall symptoms. Within the first year, the TED antibodies typically become less aggressive and soon thereafter remission.
Destroying or removing the thyroid is not a cure but a treatment. However, I’m sure if you were to ask anyone who has MS if they could remove one gland and feel better - they would do it in a heartbeat. Just remember the thyroid affects just about every single part of your body. That's a lot of parts that need time to heal and adjust from hyper to normal levels.
One autoimmune disease can - doesn't mean it will - trigger another autoimmune disease which is why it’s so important to have routine lab work and talk with your doctor about any concerns you have.
The longer the thyroid wreaks havoc the greater the chance Graves Disease could cause serious health problems. Also, keep in mind that one autoimmune disease can trigger another autoimmune disease. Keep your doctor informed of all symptoms and ask questions.
It's important to be aware of the possibility of additional health problems but not stress about it.
• Heart Disease
• Low Vitamin D
• High Cholesterol
• Dental and oral health problems
• Females: ovarian cysts, struma ovarii
• Males: erectile dysfunction
• Thyroid Eye Disease (TED)
• Celiac Disease
• Insulin autoimmune syndrome (Hirata disease)
• Rheumatoid Arthritis
• Sjögren's syndrome
• Myasthenia Gravis
Important to note... Not everyone will experience the same symptoms or to the same degree. Lifestyle, daily stress, family support, employment, age and how long a person suffers with Graves Disease before diagnosed are just a few things that plays a big part. Over the years, a person typically will swing from hyper to hypo with symptoms fluctuating from mild to severe.
The thyroid controls or has an effect on just about every single part of your mind and body. It regulates your hormones, metabolism, heart rate, body temperature and much more. Diagnosed early the symptoms are usually very mild; however, most people are not diagnosed until after suffering for years.
It’s very easy to get scared and overwhelmed when reading the long list of symptoms. From personal experience and experiences shared by fellow Gravesters, the chances of developing additional symptoms are significantly reduced once diagnosed and under a doctor’s care.
Physical symptoms may include:
• Heart Palpitations
• Shortness of Breath
• Weight Loss/Gain
• Hot flashes
• Increased appetite and thirst
• Oily thin hair, Hair Loss
• Brittle Nails and Hair
• Gastrointestinal problems
• Oral Health/Dental problems - Enlarged tongue, Burning mouth syndrome
• Fluctuating blood sugar
• Muscle pain/weakness
• Tender and/or enlarged breasts
• Joint Pain
• Tingling in hands and feet
• Urinary incontinence/leakage - Loss of bladder control
• Low/high libido, Erectile dysfunction
• Dry skin, Oily Skin, Unusually smooth skin
• Stiff neck or neck pain for weeks
• Vitiligo – loss of skin pigmentation, white spots
• Edema, Fluid Retention, Swollen hands, feet and ankles
• Headaches, Migraines, Sinus infections/headaches
• Pretibial myxedema - skin condition commonly called "Orange Peel" because of the texture of the skin.
Neurological and emotional symptoms may include:
• Impaired memory, confusion
• Mood swings, emotional instability
• Easy to cry - extremely sensitive
• Diminished concentration, inattentiveness
• Excessive worry
• Graves Rage/Anger
• Brain fog/scatter brain
• Overreaction to stimuli
• Panic Attacks
• Abnormal thinking, impaired judgment
• Can't think of simple words
• Mix up simple phrases
The same antibodes that attacked the thyroid can also attack the eyes because the same type of cells in the thyroid can also found behind the eyes. It's not uncommon for people who have mild to severe Graves Disease to also have Thyroid Eye Diease (TED) which causes your eyes to bulge out and the eye lids don't close completely which is needed to protect your eyes from bright light and dryness.
- Pain/Pressure behind the eyes
- Feeling of sand in the eyes
- Irritated and Itchy - similar to pink eye
- Puffiness around the eyes
- Headaches or Migraines
- Sore/extreme tired eyes
- Sensitive to light
- Watery eyes (dry eyes)
- Frequent stringy mucus
- Waking up with eyes glued shut
- Double vision
- Starry-eyed look - like deer in headlights
It's a good idea for anyone who has Graves Disease to see a Ophthalmologist who specializes in Thyroid Eye Disease (TED) to get a base line but if you have symtpoms it's a really good idea so the doctor can help manage the symptoms.
Most of the time it takes about a year for TED to go into remission after treating the thyroid (ATDs, surgery or RAI) and the thyroid levels are within range. Depending upon the severity of hyperthyroidism, it could be over two years.
TED can be very painful at times but it is manageable. If you can't afford to see an Opthalmologist your Endo should be able to help you. It's very important to keep your eyes moist - most doctors recommend GenTeal or Sustain liquid eye drops and nightime ointment.
- Pain/Pressure behind the eyes
Typical Initial Home Treatment:
· Frequent eye drops to keep the eyes moist.
· Night-time eye ointment
· Wear a snug eye mask at night when sleeping.
· Selenium/Brazilian Nuts for mild TED has shown promise.
More advanced Treatment prescribed by a Ophthalmologist:
· Prednisone/anti-inflammatory medication
· Eye Plugs
· Radiation Therapy
· IV Corticosteroid therapy
· IV Rituximab Therapy
· Orbital Decompression surgery
· Eyelid Surgery
· Eye Muscle Surgery
· Botox Injections - still under review
Use eye drops routinely throughout the day.
Night time eye ointment before going to bed.
Wear an eye mask at night when sleeping to keep the eyes from dyring out.
Black out curtains in the bedroom help a huge amount when first waking up. That moring sun can be very painful!
At the end of a really bad day try sleeping with swimming goggles at night. Not very comfortable but they create an air tight chamber to prevent the eyes from drying out.
If you enjoy reading, Invest in an E-reader so you can adjust the font.
Sunglasses are a must. I never leave home without them!
Discuss eye plugs with your doctor. They are small little plugs inserted into the inner corner of the eyes to plug the tear ducts to keep the moisture around the eyes.
A little tip when taking photos is to have the camera above eye level angled down to avoid the appearance of staring bulging eyes.
See the Resource Tab for links relating to the treatment and managment of Thyroid Eye Disease
T4 is made by the thyroid or without a thyroid the T4 is obtained through medication such as Synthroid or Levoxyl.
T4 by itself has no value. The T4 is converted into T3 as needed for energy.
Think of T4 as a vitamin - by itself the vitamin has no value until body uses the specific elements of that vitamin and distributes it throughout the body.
T4 - Total T4 is the amount of T4 in the blood.
FT4 - Free T4 is the amount of T4 that can be converted into T3. Not all T4 can be converted into T3 which is why most doctors will order the Free T4 lab work.
T3 - Triiodothyronine
T3 provides the body with energy by taking an atom from T4 and converting it into energy which is then used to regulate such things as the heart rate, blood sugar, body temperature and metabolism.
RT3 - Reverse T3 slows the body down and reduces the energy. The body takes a different atom from the T4 which puts a halt on the production of energy. RT3 is is constantly fluctuating and for that reason is very difficult to test.
If the lab work results show a normal level of Free T4 but a very low Free T3, it could indicate a problem with the body converting T4 intoT3 - in which case typically a person will take a small amount of T3 along with Synthroid or Levoxyl (T4).
More information relating to T3 replacement See: European Journal of Endocrinology
A short video explaining T3 by Dr. Oz
See the Resources Tab for links related to Lab Work
Pituitary Gland is known as the "master" endocrine gland under the control of the hypothalamus. The pituitary gland secretes nine hormones one of which is TSH (Thyroid-stimulating hormone).
TSH activates the thyroid to produce T4 and T3. A feedback control system is set up to regulate the amount of thyroid hormones that are in the bloodstream.
Without a thyroid, TSH is still produced to indicate high or low T4/T3 amounts but, obviously without a thyroid, the pituitary gland cannot activate the thyroid to produce those hormones which is why we need thyroid replacement medication.
In the case of Graves' Disease, the antibodies cause the thyroid to basically go rogue and produces huge amounts of T4 and T3 which then causes the pituitary gland to stop producing TSH.
• High amount of T4 and T3 in the blood - the pituitary gland stops the production of TSH.
• Low amount of T4 and T3 in the blood - the pituitary gland increases production of TSH.
• Normal TSH and T4 but low T3 could indicate a problem with the body converting T4 into T3
Graves' Disease = Antibodies that active the TSH Receptor (TSH-R)
TSH-R + Antibodies = Thyrotropin Receptor Antibody (TRAb)
The antibodies test TRAb is measured to determine the severity of Graves' Disease and to monitor the success of treatment with medication, radiation or surgery.
The standard TSH optimal range is typically 4.5 to 5.0. However, in 2003, the American Association of Clinical Endocrinologists revised these guidelines narrowing the range to .3 to 3.0. Most doctors continue to use the standard range of 4.5 to 5.0..
It's very important to know what optimal range your lab uses when determining the results of your lab work and keep a journal of your lab results.
The lower the TSH number combined with a higher Free T4 & T3 typically points towards Hyperthyroidism.
Free T4 (FT4) - normal range is approximately 0.7 to 2.0
Free T3 (FT3) - normal range is approximately 2.3 to 4.2
Total T4 - Normal Range: 4.5 to 12.5
Total T3 – normal range: 80 to 220
* Low TSH usually means Hyper
* Low FT4 may mean Hypo
* Low FT3 may mean Hypo
* Low Total T4 + high TSH may mean Hypo
* Low Total T4 + low TSH could mean a pituitary problem
* Low Total T3 may mean Hypo
* Normal Free T4 but a very low Free T3, could be a problem with converting T4 into T3.
TRAb is measured to determine the severity of Graves Disease and to monitor the success of treatment with medication, radiation or surgery.
Graves Disease = Antibodies that active TSH (Thyrotropin) Receptors produced by the Pituitary Gland.
TSH R + Antibodies = Thyrotropin Receptor Antibody (TRAb)
In addition to the routine thyroid lab checks it's really important to discuss the follow additional lab work with your doctor.
* Comprehensive Vitamin Check (especially Vit D and B12),
* Lipid Panel or Cholesterol
* Blood Glucose
* Blood calcium level test and a bone scan
* Liver Panel
It's quite common for us with Graves Disease to have low Vit D which can cause a wide range of symptoms similar to what we already experience such as muscle weakness, depression and flu like symptoms.
Please see the Vitamins and Nutrition link under the Resource tab for websites relating to vitamins deficiency.
In the majority of cases, ATDs are the first form of treatment. Below are the typically prescribed drugs.
- PTU: Propylthiouracil (USA)
- MMI: Methimazole (USA)
- Carbimazole (Europe & Asia) Once absorbed in the body is converted to Methimazole.
- Neomercazole - Trademarked brand name of Carbimazole.
- Beta Blockers such as Propranolol and Atenolol are often used to help with rapid heart rate, nervousness, and tremors.
- PTU: Propylthiouracil (USA)
Effectiveness of Antithyroid Drugs
An estimated 25 to 50% of patients go into remission when taking an antithyroid drug for at least six months to a year. This is most likely if...
1) You have mild or subclinical hyperthyroidism.
2) Your goiter (thyroid enlargment) is small or minimal.
3) You are not a smoker.
4) You do not have high levels of blocking antibodies.You are not a child, teen or young adult.
5) You do not have ophthalmopathy.
People who have more serious hyperthyroidism, a large goiter, smoke, have high levels of blocking antibodies, ophthalmopathy, and/or are a child, teenager or young adult have less of a chance of permanent remission on antithyroid drug therapy.
Some studies have shown that remission rates are higher when you take antithyroid drugs for more than 18 to 24 months versus 6 to 12 months, but the findings are still controversial.
While some 30 to 40 percent of patients treated with antithyroid drugs remain in remission 10 years after they stop their drug treatment, an estimated half of the patients who have a remission will also have a recurrence.
The most common side effects are rash, itchy, and hives. To reduce the unpleasant side effects talk with your doctor about splitting the dose.
See MedicineNet for detailed information relating to the dosage, side effects and drug interactions.
Ipod - download soothing and relaxing music.
Eye Mask - nurses love to turn those light on bright at 3am!
Neck Pillow - great neck support for after surgery & sleeping.
Button up shirts - you are probably not going to want to try and pull a shirt over your head for about a week.
• Expect to have a sore throat and a diet consisting of ice chips for the first few hours after surgery.
• Some doctors place a drainage tube at the end of the incision. It looks pretty strange but I promise there is no pain involved. Typically it will be removed within 24 to 48 hrs after surgery.
• You will have several staples across the incision. Neck mobility will be limited but typically there is little pain other than a little discomfort from the incision.
• Your levels will be high for the first 3 to 5 days after surgery from the extra production of hormones produced by the thyroid prior to the thyroidectomy added with the thyroid replacement medication the doctor will start you on following the surgery.
• After the extra hormones produced by the thyroid have cycled through your system, often a person will feel a sudden low or drop in energy - much depends on how hyper your thyroid is before surgery. Your body will need time to adjust to the thyroid medication and your doctor should be taking regular blood tests - typically every 4 to 6 weeks for the first 6 months.
• Often the psychological and emotional effects are similar to what a woman experiences after having a baby. Your hormones will need time to return to normal.
• It will take at least a year and often longer for your body to heal from the physical and psychological effects of hyperthyroidism. If you had symptoms for over five years - you can't expect your body to heal within six months.
• With respect to short/long term symptoms related to both Graves Disease and Thyroid Eye Disease - the length of time a person has gone undiagnosed, untreated and the severity of their symptoms will often determine how long it will take to reach optimal thyroid levels, heal from the physical affects and the severity of any long term symptoms.
Typically a doctor will advise their patient to stop taking carbimazole or methimazole 5-7 days prior to RAI and to avoid all foods with iodine two weeks prior to the treatment date.
Usually, the person is in complete isolation from pets, children and adults. They cannot share a bed or bathroom for several days. All items touched must be disposed of or washed separately with hot water. How long a person is isolated depends on the amount of RAI prescribed by their doctor and whether or not they have young children in the home. It's usually about 3 days but can be as long as two weeks.
Preparing for RAI again depends on the how much radiation is given. Some people will do what is minimally necessary and others will take every precaution possible. Everyone I've spoken to says that a great support team is very important and makes a huge difference in recovery.
The list is a general list of what the doctor may give you and what others have suggested:
• Prepare and freeze meals for about a week
• Paper towels, plates, cups and utensils
• A neck pillow is a great thing to have for watching and relaxing
• An eye mask is a must so that you can rest peacefully during the day
• Buy a few new books, magazines or crossword puzzles
• Lemon Drops help to prevent or soothe a sore throat
• Case of bottled water - drink lots and lots of water to flush the radiation out
• Disinfectant wipes
• Plastic bags for the phone, TV remote and other small items
• Buy cheap or use old towels, mattress pad and linen
• Talk with the hospital and ask if there is a hotel close by that has protocals for someone who is having RAI treatment. Since you have to spend time isolated and depending on your household it might may be a little more relaxing to just spend the time alone in a hotel room without worrying about bed sheets, linen and plastic utensils.
More information relating to RAI inlcuding detailed information for before and after RAI can also be found under the Resources tab: RAI
What you will need to do again will depend on amount of radiation you are prescribed but for the most part the following is what you should expect:
- Daily showers if not twice daily
- Flush the toilet at least twice afte use
- All dishes must be washed separate from others
- Laundry should be bagged for a few days prior to washing then do so separate from others.
- Drink lots and lots of water to flush out the radiation
- Sore throat (lemon drops and water help)
Don't expect to feel anything significant right away. Typically after the first week, most people start to feel the swining back and forth from hyper to hypo. Think of it as a tug of war - the radiation will be trying to destroy the thyroid while the antibodies will be trying to save it. This takes approximately 4 months before reaching a state of hypo - but, it could be sooner or take several months longer and possible up to a year. It depends on the severity of your Graves' Disease and the amount of radiation prescribed. If after a year the RAI does not destroy the thyroid another round of RAI may be needed.
Once reaching a hypo state, the doctor will then prescribe thyroid hormone replacement medication. Finding the right dose of medication can be a bit of a challenge. Your body now considers hyper to be normal so the "normal levels" may seem like hypo. Research shows that it takes a minimum of a year and up to several years for the mind and body heal from the effects of the thyroid wreaking havoc and to adjust to functioning at normal levels.
"A letter to you from Graves’ Disease"
Hi. My name is Graves, and I'm an invisible autoimmune chronic disease that attacks your thyroid gland.
I am now velcroed to you for life.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyhow I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now!
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything!
Oh, yeah, I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me!
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you loose weight. I don't discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) Maybe you have a family history of me. Whatever the cause, I'm here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh! Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong thyroid meds for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the doctor how debilitating I am and how sick you really feel. In all probability you will get a referral from the 'understanding' (clueless) doctor, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her thyroid pill" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
I've been trying to keep this next part quiet, but since you're reading this you already know.
The only place you will get the kind of support and understanding in dealing with me, is with other people that have me. They are really the only ones who can truly understand.
I am Graves Disease.
A beautifully written letter from a husband to all the husbands who has a wife with Graves Disease.
Dear Husband of Graves,
This letter is to all of us who are or were married to someone with Graves’ disease. It is a letter from my heart as I know of no other way to talk about it. If in some way it speaks to those of you who are now struggling or have struggled with the loneliness, the frustration at the lack of answers, the inability to help the ones you love, having to make major decisions without your partner, or going through the pain of divorce because of a disease very few understand and fewer still can relate to, then it will have been worth exhuming painful memories that time was mercifully putting to rest.
See the link to read the full letter: