[Bobbi]

#1074822

Hi, ManicMom, and welcome!

One of the facilitators here, Ski, had to have RAI twice. Apparently the nuclear med doctor lowered the dose of RAI, without consulting the endo or Ski, and she remained hyperthyroid. Anyway, it does happen, infrequently, that the RAI does not work sufficiently to cause us to be euthroid/hypothyroid.

As to how many folks get to euthroid (normal thyroid levels without medication), I do not have an exact figure, but the number is small. It is possible. IT is also possible that the euthroid status will not persist. If enough thyroid tissue remains, we can become hyperthyroid again. Also, the natural progression of the disease is for the antibodies to destroy thyroid cells, and so hypothyroid is thought to be inevitable for all of us eventually.

Is there a reason you are not on a sufficient dose of PTU to keep you in the normal zone of thyroid levels? Have you talked with your doctor about returning to the drug while you are waiting for the RAI to work? It could bring you some relief.

I did not find the symptoms of hypo all that different from what I associated with "normal." Sleeping more. Fatigue — but fatigue that could be combatted with some mild exercise. Muzzy brain activity. Constipation. Sensitivity to cold. I did not gain weight while literally hypo (i.e. before adequate synthroid), probably because my appetite was suppressed. I did, however, gain weight due to the return of muscle lost while hyperthyroid. (The difference is that muscle is more compact than fat, and clothing size does not change as dramatically as the weight increase.) It is important, once the doctor gives the OK for exercise, to start slowly getting back to normal exercise levels to strengthen the returning muscle.

The prevailing theory is that some form of stress is involved in the development of an autoimmune disease: something sets off an activated immune response. And family history does not have to be specific for Graves. If there is autoimmune in the history (diabetes, rheumatoid arthritis, etc.), hypothyroidism, or even prematurely gray hair, that can provide the markers for a genetic predisposition. Also, there are certain times in a woman’s life when she is more likely to develop an autoimmune like Graves : puberty, pregnancy and menopause are the main ones.

I hope you are feeling much better soon.

[elf]

#1074823

It’s slightly unusual to be on PTU 4 months after RAI. Do your tests show hyper?

After my RAI 3 years ago (I was also 41 then), I wasn’t taking anything for 5 months (the tests were within normal ranges for 5 months), the tests showed hypo 5 months after, I started taking Synthroid. Looking back, the whole year after RAI was a blur. Just because I was listening to myself, then there was a hyper spike 3 months after RAI (when the thyroid was finally dying off), – and the main reason, my eyes were bothering me (scratchy, teary). After a year, the eyes settled and it seemed like everything cleared up. I got back to my pre-Graves feeling of general well-being. This was my experience.

As for Why GD happened, I’ve almost resigned to figure out. No history in my family, neither. Was diagnosed after a stressful event 3 years ago, but looking back, my symptoms and behavior were slightly pointing to Graves, since my youth. I might have had pre-disposition all my life, because I never could handle stressess, they caused much more distress in me than in *normal* people. Basically a bunch of stresses pre-cipitated clinical Graves.

Please keep us updated,
elf

[Manic_Mom]

#1019886

Hi to Everyone and Happy New Year,

I am Heather (41 years old) and new to the group. The good part of my story is that my primary physician diagnosed me within 24 hours of a visit. I visited him for a follow up for a back problem and I just came off Prednisone – he asked me his routine questions. I told him that my friend pointed out that I was out of breath just by walking down stairs and I felt like I was still on Prednisone even though I stopped taking it. I am grateful for his quick diagnosis, especially after reading some of the posts of months without diagnosis.

I was diagnoed with GD in February 2007, and after 18 months of the PTU, I tried RAI (In August 2008). Well my goiter went down, and I am still on the PTU, I have gained 15 pounds, but still as manic as ever. I have been waking up in the middle of the night with my heart beating out of my chest, I have 0 patience no matter how hard I try and still feel confused at times. My doctor said it may take 6 months for the RAI to work and their is a possible that I will need repeat treatment, however she said it was promising that for the first time since my diagnosis my lab results show that my TSH result is 0.01 and it was always <0.01.

What may happen (symptoms wise) if the RAI is successful and I start becomming hypothyroid?
Has anyone had successful RAI treatment and not needed synthroid type meds after?
How long do you wait to determine that the RAI was not 100% successful and you may need more dose/s?
Do you have theories of how your GD came to be?…mine is my back pain/MRI and Prednisone..and my back is fine now. No history in my family.

I am so happy that I found your group and I am looking foward to any answers/advice/experiences.

Thanks.

P.S. I do notice that my heart beats harder and faster if/when I do drink alcohol.

[Mickey65]

#1074824

elf wrote:As for Why GD happened, I’ve almost resigned to figure out. No history in my family, neither. Was diagnosed after a stressful event 3 years ago, but looking back, my symptoms and behavior were slightly pointing to Graves, since my youth. I might have had pre-disposition all my life, because I never could handle stressess, they caused much more distress in me than in *normal* people. Basically a bunch of stresses pre-cipitated clinical Graves.

Elf – I think I’m on the same wavelength as you with my GD. There is NO history in my family of GD that I know of. I work as a dispatcher for a trucking company – which is very stressful, and I also bought my first house this year. I think those two things combined brought it all on for me.

I hope my eyes feel better too. I have the same symptoms like you do.

[elf]

#1074825

Mickey – I replied with my post-RAI experience in more detail replying to your thread of what happens after RAI, if you haven’t seen it yet. – It just has more detail (I had RAI, like you, on Dec.13 but in 2005). Glad to hear that your symptoms keep improving.

[sarabear0508]

#1074826

HI!
I am new to this group also. I don’t have a lot of answers BUT I have the best answer. I found a book EVERYONE should read. It has been my thyroid bible. It has everything and anything you need to know. I found it at my local library. It’s called THE THYROID SOLUTION by Ridha Arem M.D
I can’t recommend this book enough! It will answer all your questions. It’s written with exact expertise and has a mind and body plan for beating the disease and regaining your health and your life! It also has a STRONG emphasis on Depression- and all the side effects the mind goes through and has MANY solutions. It’s easy to read and I found it extremely comforting. It’s for both hypo and hyperthyroid patients. With sections for each. It even talks about thyroid cancer and it’s treatments. It has the following:

PART 1
* THE EMERGING MIND-THYROID CONNECTION: HOW A TINY ENDOCRINE GLAND INTIMATELY AFFECTS YOUR MOOD,EMOTIONS AND BEHAVIOR!*
~ Thyroid Imbalance: a Hidden Epidemic
~ Stress and Thyroid Imbalance:
~ Hypothyroidism: When the Thyroid is Underactive
~Hyperthyroidism: When the Thyroid is overactive
~ Thyroid Imbalance- Beating Depression, Anxiety and Mood Swings
~Medicine from the Body: Thyroid hormone as an anti-depressant.

PART2
*NO- YOU’RE NOT MAKING IT UP! COMMON EMOTIONAL AND PHYSICAL INTERACTIONS.*
~Weight, Appetite and Metabolism: The Thyroid and your sex life
~Hormones of Desire: The thyroid and relationships collide.
~Overlapping Symptoms and Syndromes: Fatigue-Chronic Fatigue Syndrome-Hypoglycemia and Fibromyalgia

PART3
*WOMAN’S THYROID PROBLEMS. YOU’RE SYMPTOMS ARE NOT ALL IN YOUR HEAD!
~ Premenstrual Syndrome and Menopause: Turning the cycles
~ Infertility and Miscarriage: is your thyroid a factor?
~ Postpartum Depression: The hormonal link

PART4
*DIAGNOSING AND TREATING COMMON THYROID DISORDERS; THE JOURNEY TO WELLNESS
~ What you need to know about thyroid tests
~ Treatment and Imbalance
~Curing the lingering effects of thyroid imbalance
~ The New t4/t3 Protocol- " It made me feel better ALL over!"
~Living with thyroid eye disease
~ Thyroid Cancer: Curable and Anguishing
~ Eight Steps for the future- How to promote a better understanding of Thyroid,Mind, Body and Mood.

I hope this helps!

[mlomba2]

#1074827

Hi Manic Mom~

I’m new to this discussion group and Graves’. There were a couple of things that stood out for me in your post. I too have episodes where I have absolutely no patience. My husband thinks I’m nuts and I nearly ruined my mom’s Christmas. Luckily, my mom sat my husband down at Christmas and explained that clearly it is either my meds (Tapazole) or after meds I will return to my old self. I did some research, and there is some talk of something called "Graves’ Rage". Try a google search. It made me feel better to know that I wasn’t crazy. The second thing that struck home with me was your rapid heart rate with alcohol. I feel fine having a few drinks- but I do wake up roughly 6 hours after drinking with heart palpitations. They wake me up from a solid sleep and take hours- some times the entire next day to go away. I get up immediately to take my daily beta blocker (atenonol) but that doesn’t seem to do much good. Thank you for sharing your experiences- it makes me feel a lot better to know someone is having the same experiences as myself. Good luck to you and a healthy new year!

[Author]

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