If you have the antibodies that led to a diagnosis of Grave's, you have Grave's.
You always will. Be thankful you do not suffer from the symptoms of a thyroid under the influence of the antibodies any longer.
You have Grave's disease regardless of the hormone levels in your body. The distinction between Grave's disease and Hyperthyroidism is very simple, and very important.
Hyperthroidism is a condition involving thyroid hormone levels.
Grave's disease is an auto-immune disorder that is not curable, and can lead to other auto-immune disorders.
That last sentence is very important, and is something to keep in mind the rest of your life.
I don't know the answer to your question, but I have Hyperthyroidism from Graves Diease as well & I just made the decision to have surgery instead of RAI. I am meeting with my surgeon in 2 weeks. Is your scar still visible? Do you have any tips for me about the process of getting surgery? I am confident about my decision to have the surgery, but I am still very nervous about it.
Can I just say that I sometimes find the level of pessimism on this board to be irritating.
Should we really need to keep in mind that it can lead to other autoimmune disorders. I am told by my endo that there is a very, very small percentage that might apply to. Sorry, but I have avoided this board for awhile for this very reason. Look at Faith Ford, Barbara Bush, George Bush Senior.... All Graves' patients doing very well.
Sorry again if my aggravation offends. It is just that truly this board can put me in a bad mood.
Oh and to answer your question... yes, you may always have the antibodies although they can lessen and even go away, at least according to my Endocrinologist. Regardless, it sounds like you are doing excellent! How wonderful that your hormone replacement tweaking is going so well. All the best, and remember your success.
I had one autoimmune conditions--ten years later--I had another.
But I have a strong family history of autoimmune diseases--that might be the difference.
Antibody counts can go down to very low or even normal levels. It might take a while after thyroid removal though.
I'm deep south southern too:)
It is unfortunate that I have been displaced to the midwest:((
Roll Tide
War Eagle!!
Had to do that since I don't see too much of that on the forum!
Hey!! Oh my goodness, now I feel at home.
My family is War Eagle...I'm a convert to Roll Tide..by way of--well--I liked the colors better.
Just kidding.
Hey all! Thanks for all of the feedback! It is so helpful! I haven't checked this page in a while so a belated thank you to all who responded. I am now 15 months post complete thyroidectomy and my biggest complaint/concern is my weight. All of the other symptoms from graves/hyperthyroidism are really minimal. My eyes are FINALLY back to normal but it took quite a while .... I was accutely aware of the changes in my vision and the appearance of my eyes. My scar is practically invisible. Friends and family frequently tell me that they cannot believe how good it looks. So, I guess we've come to the conclusion that once you have graves, you still have the antibodies even if you have your thyroid/hormone issue worked out. It is SO great to have a forum where we can ask questions, discuss and encourage each other through this disease. THANK YOU for your input!
In It With You,
Elise
P.S. I would just like to add that I am 100% convinced that I do still have Graves disease ... for a while, I was convinced that my graves disease would be a thing of the past once I had my total thyroidectomy. For me, this whole experience has been a wake up call. When I am under a lot of stress, my graves symptoms come back with a vengeance. I am STILL learning how to take care of myself and lifestyle changes certainly do help a lot. However, I am reminded that stress really does affect me and it is very serious. So, because of this disease, I am learning more about my body and how it is affected when I am not taking care of it as I should. It is hard to avoid stress but I am constantly trying to learn how to deal with it so that my graves symptoms will (hopefully) be controlled. If anyone has any good tips or suggestions on this, please share!
I was just diagnosed with Graves diease... I am so glad to hear of the successes on here! I was devastated to hear of his disorder. My doc put me on PTU and I was feeling alot better but, I quickly had an allergic reaction to it. VERY itchy and swollen palms and ankles. I am now on target for a total thyroidectomy in 10 days. I am just curious is some of my symptoms will go away once the thyroid is out? I am having really bad muscle pains in my back and shoulder. I looked on line and Graves can cause muscle wasting. Did any of you experience this and/or did it get better? Good luck everyone!!!!!
After your TT, you will go through the phase of finding the correct dosage of medication you will need to be on. ** you will need patience** ; it took me a yr. to finally get right where i needed it to be, but everyone is different.
It has been 15yrs since my TT (I was 23); I did the RAI,it did not work for me, so ended up doing the TT. I am doing well as far as the thyroid levels go. So can't complain.
Good luck, and remember patience....
After being diagnosed with Graves disease at age 16 years (1972), all except 5% of my gland was removed shortly thereafter.
I've never had a doctor that knew how to treat me, and being actively moving about the country, I sought several super primary physicians. But the story was the same: my TSH was consistently too low, despite a common maintenance dose of .125mg synthroid per day. Yet, I always felt hypothyroid after surgery. The Synthroid remains the best "source" I've taken. Armour brand the WORST source of T4/T3. Source matters to most folks, with some working better than others. We vary.
In the mid 1980s, doctors became concerned about too much T4, because of the lack of deposit of bone calcium with too much, and if too high, and of course one can have heart issues. So beginning in the mid 80s, most doctors kept dropping my dose of T4 because my TSH levels came back too low in clinical blood work. They dropped my dose... until I lived half my day sleeping! For a while, I was given only 0.05 mg of T4 per day, and that didn't get me through a morning of normal activity. But, by golly, I finally had a normal TSH. Unfortunately, I did not have a normal life!
What was Graves disease doing to me post surgery? It was a mystery and frankly, I began to take my life BACK from doctors as soon as I found ways to find Synthroid from overseas markets. I put myself back on a realistic dose I was given post surgery. After all, I knew I didn’t want to sleep all day, grow fat, and remain hypothyroid just so the doctors could feel good that I had a normal TSH! At the same time, I began a campaign of scientific research on Graves disease and on what the thyroid does for me on the normal course of a day.
The last 10 years has been a dream, because I finally found the recipe.
My Findings:
Graves, the autoimmune part, means that a thyroid stimulating immunoglobulin (TSI) gets overproduced, mimicking TSH in the pituitary release and converts T4 into usable thyroxine, trigger more production. In the pre-surgery Graves patient, TSH is often low (because the T4 and T3 are cranking out full kilt). In post surgery, it is argued that a normal TSH will occur when a normal amount of T4 is given back in the form of Synthroid. And the body will convert what T3 it needs, when it needs it throughout the day, via the beautiful Hypothalmus,-Pituitary-Thyroid Axis system HA!.
Good plan, but some of us don’t follow the plan. My type of autoimmune disease didn’t go away after the thyroid was removed. Instead, I continued to overproduced TSI and somehow that affected the TSH feedback loop, even after thyroidectomy.
Problem in me: Normally doctors look for a low TSH to tell them that the T4 is too high of a dose, and a high TSH if too low of a dose, etc. My TSH was always low (as indicated above).
After reading a set of articles by Prummel and Brokken (2003 (on web), 2010, a book now on pituitary function) it became apparent that the immunoglobulin TSI is still influencing my TSH output via my pituitary, directly, by acting on the receptors in the pituitary organ which has some fraction of cells that normally bind to TSH. It is believed the receptors tell the Pituitary how much TSH is too much or too little based on how much T4 or T3 I have in circulation. But the Graves somehow causes me to show an abnormally low TSH because the TSI was occupying receptor places in the pituitary where TSH normally does. What a monkey wrench this causes! TWO problems arise in me.
Problem 1 (I've already telegraphed). In the real world of complex doctoring, the low TSH reports lead doctors to reduce my T4 because why else would I have a low TSH if I didn’t have excess T4/T3 ? High T4/T3 reduces the TSH by negative feedback. Wrong. My autoimmune problem caused the THS to lower, NOT the amount of T4 or T3! Something about the TSI binding to the pituitary receptors feeds back on the TSH levels fooling the doctors to thinking I have excess T4 or T3. Not true, I have too much TSI.
Problem 2. I discovered yet another curious factoid perhaps a greater subset of us Graves suffers have (and which I've not yet found data for but I know my body, so I listen)
Doctors like to say take your T4 pill once a day. In a perfect system, the T4 converts to active T3 in the functioning of a normal H-P-T axis, throughout a normal day. But Not Me. I just take the dose, I think the T4 just converts to T3 way too rapidly. I don’t know how, but I am pretty certain that the TSI somehow leads to the HPT signal to make a quick conversion to T3. I feel reved up in the morning after taking a full dose (0.125mg, after approx. 1 hour of taking it), but I feel flat by lunch, lethargia kicking in. ALL GONE. No reserve to draw from. Kaput. I am actually HYPERTHYROID if I take the dose of .125 mg all at once! For about 4 to 5 hours, I’m great, then I sleep the rest of the day. Hypothyroid by noon.
What did I do in compensation and why: I take .05 mg T4 with a smidge of T3 (10 mcg, Cytomel --never Armour brand, it is terribnle in the effects) (T3, ie, Cytomel works as a kickstarter in 5 to 10 min whereas T4 alone is 40 minutes, at best). I take this dose about 30min before breakfast and I repeat the dose at lunch (total of .1 mg T4 and 20 mcg cytomel), and another 0.02 T4 at dinner (a total of .12mcg T4 for each day, and no more than 20 mcg cytomel). I finally feel productive, and I know when I miss a dose, especially at the functionally important time such as a meal or a lecture --I feel sleepy and foggy soon thereafter. So for me to "feel" normal, I had to parcel my doses to prevent the too rapid of a conversion of T4 to T3.
SO, Graves is still affecting me after 35 years, and it affects me by fooling my TSH feedback system, and by too quickly converting any one dose of T4. I MUST parcel, and I MUST have a reasonable dose. I feel I am careful NOT to overdose. I don't want heart disease or bone disease. I just want to function on an even keel!
Doctors, most of them, are not aware that Graves can still affect patients, and because the autoimmune genes that trigger Graves can be different across the globe, I’ve no doubt that all of us are a bit different in how we express Graves post surgery. This variation is VERY VERY important for doctors to understand. We can’t just be regulated by blood readouts of TSH, T4 and T3.
A final Note. I take Isol Iodine. 4-6 drops daily. I don't store iodine anymore and Iodine is critically important to both men and women. Afterall, it is an antioxidant and keep for proper cell division (especially in breast).
I’m English-European, with some German and a little bit of French (I am certain of my gene background).
If anyone wants the website or a copy of article by Prummel and Brokken 2003, I am happy to supply.
Welcome to the forum. Thanks for the information in your post. There is some very interesting info that I want to delve into more deeply.
I don't know all the possible contributors to TSH being suppressed when taking thyroid meds. I do know that even for patients that are not Grave's patients, many of us report having suppressed TSH levels while taking T4 meds and other members while taking A combo of T4 and T3. We are also painfully aware of the problem of lack of conversion of T4 to T3 when taking T4 only meds. I lived with that for 25 years until I learned three years ago about the importance of FT3 and found mine was very low in the range. After adding in T3 to my meds, and raising my FT3 to the upper part of the range, I now feel best ever. My TSH continue through all this time to be about .05 and I have had to fight off many doctors and Phys. Assts. who wanted to reduce my meds.
Since you have given me much to read and think about, I thought it only fair to send some your way. LOL I think you will find some very interesting points in this summary of a lot of references. A number of them relate to suppressed TSH.
http://www.hormonerestoration.com/files/Thyroid.doc
http://hormonerestoration.com/files/ThyroidPMD.pdf
Help please. I am having really bad mirgraines. I have been in Er many times and they can not seem to find a medication to help. Dose anyone else have these headaches? I am also having my thyroid taken out in two weeks. Will this help the headaches? I was on tapazole but can not take it beceuse my liver enz went too high.
Medrequest, amazing post. Thank you for your insight. I've got hashimotos and can hardly function. Your post is inspiring. Bruce
When I was diagnosed with Grave's Disease 12 years ago, I did suffer from excruciating migranes too. I can only assume they were caused by the disease-a messed up thyroid can cause a lot of different symptoms. I did not have my thyroid removed but instead was treated with the radioactive iodine. Afterwards, I was then diagnosed with hypothyroidism-once I began taking the Synthroid the migranes have not returned. Good Luck!
Quick question. I was diagnosed with Grave's around two and a half years ago and went through some serious side effects. I decided to use RAI to treat the disease and so far it has done the job. I currently take 200mcg of synthroid, which to me is the best medicine one can take. Nothing else seemed to work. Today, I am doing fairly well and feel relatively good. However, I have severe issues of fatique. My TSH level is around the .05 to 1. Three months ago it was 18.6.
My question is .... does the fatique let up????? Also someone informed me people with Grave's can suffer from something called adrenal fatique. Has anyone else heard of this and if so can suppliments helps with this to increase energy?
Any feed back is good.
Scott
Hi RevScott,
I am astonished that you are on 200 µg of synthroid, as generally the dose of 150µg is sufficient to handle a 220 lb man. I'm not going to second guess weight here, but it is possible, if you are under this weight, you are actually being overdosed and indeed are feeling a bit of exhaustion as your body is reved up. I apologize if dosage is something that you are your doctor have already carefully checked. But generally, with radiation therapy, one works UP to a higher dose rather than start off with it, as hypothyroidism becomes more severe with time post RAI. So that is one thing to consider when asking your doctor again. Secondly, in a recently published paper: ---Escobar-Morreale HF, Botella-Carretero JI, Escobar del
Rey F, Morreale de Escobar G. Treatment of hypothyroidism
with combinations of levothyroxine plus liothyronine.
J Clin Endocrinol Metab. 2005;90:4946-4954. ---
the authors have examined, in a double blind, gold standard procedure, mono therapy versus combination therapy with T4 only versus T4 and T3 ( a ratio of 50µg /12.5 µg ) and found that patients felt "better" mentally and physically when on the combination T4 /T3 therapy. So that is something to talk over with your doctor, and be sure to determine whether you are on the correct dose of T4.
The thought by some physicians (e.g., in Anolil, JR Hypothyroid Symptoms Following Radioiodine Therapy for Graves' Disease Clinical Cornerstone • TREATMENT OPTIONS FOR THYROID DISEASE • 2005: Vol. 7, Supplement 2) is that there is some facilitation activity that is normally needed for the activation of T4 --perhaps some feedback system that the T3 is providing.
Exhaustion comes from two ends of the spectrum: too much and too little free T4/ T3.
Good wishes.
Hi all
I was so happy to stumble upon this forum! I was diagnosed with Grave's 2 years ago. I was on treatment for 3 months, and the thyroid stabilized. 2 months ago, my thyroid function went up from a very normal 16.4 to 45.5 and was on treatment again (NeoMercazole). The meds had no effect, and the function count went up to a dangerous 63. I have an appointment with a surgeon on 20 Oct, and would just like to know if anyone could please explain the procedure from hereon forward to me - tests etc. I have only had blood tests up to now. From what I can gather, I will not consider RAI due to the possible side effects, so surgery it is then.
I am quite nervous, as you can imagine :)
Hi all
I was so happy to stumble upon this forum! I was diagnosed with Grave's 2 years ago. I was on treatment for 3 months, and the thyroid stabilized. 2 months ago, my thyroid function went up from a very normal 16.4 to 45.5 and was on treatment again (NeoMercazole). The meds had no effect, and the function count went up to a dangerous 63. I have an appointment with a surgeon on 20 Oct, and would just like to know if anyone could please explain the procedure from hereon forward to me - tests etc. I have only had blood tests up to now. From what I can gather, I will not consider RAI due to the possible side effects, so surgery it is then.
I am quite nervous, as you can imagine :)
I was dx'd in 2004, and treated with radioactive iodine. Over the past 7 years, it's been a yo-yo of symptoms and weight fluctuations (frustrating to say the least)! Most recently, my levels & heartrate was so high, I was at danger of heart failure. A new endocrinologist prescribed methimazole & propanol and explained that a rarity occurred in which a portion of my thyroid survived the initial RAI treatment and reactivated with hyperthyroidism. So, I am thinking of requesting a total thyroidectomy at this point, and dealing with the low levels for the rest of my life without worrying about another recurrence of hyperthyroidism.
I do concur with medrequest - I believe doctors are too quick to treat numbers only and not symptoms of individual patients. If your numbers look great, but you feel terrible, what good is that? Any advice is appreciated!
lemme get this straight? youre on 0.05mg or 500mcg a day of t4 (synthroid)?? isnt that a lot?