Thyroid Disorders Community
Diagnosed with Hashimoto's AND Graves disease!
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Diagnosed with Hashimoto's AND Graves disease!

I found this support group while googling about thyroid disorders.  I hope to find answers and peace of mind.  I am 47 and have always been fairly healthy.  Within the past few months, I noticed extreme fatigue, especially late afternoon.  I need a 2 to 3 hour nap daily, which is so out of character for me.  Also, since December 2008, I have gained 25 pounds and my hair is falling out at an alarming rate.  I have never had a problem with my weight, in fact, I have been slightly underweight.. until recently.  I went to my family doctor this past February, who sent me for labwork.  My TSH level came back 0.004, vitamin B12 high at 919, cholesterol 224, triglycerides 303, HDL 39, LDL 124; everything else was normal.  She then sent me for a thyroid ultrasound which came back positive for Hashimoto's thyroiditis.  Two weeks ago I had a nuclear medicine thyroid uptake scan which came back positive for Grave's disease.  Last week was my first appointment with an endocrinologist who informs me that I have both Hashimoto's AND Graves disease, which according to her, is very difficult to treat and is not that common.  Her first suggestion was the RAI (radioactive iodine), second choice was tapazole/PTU for a year to 18 months, and thirdly was surgical correction.  She tells me that the tapazole treatment will only put the hyperthyroidism in "remission" so that we can treat the hypothyroid.  

My first inclination was to proceed with the thyroidectomy.  Then I started thinking about RAI therapy.  I am really confused on what truly is the best course of treatment is for me.  I know it's a personal choice, but how do you come to a decision?  I would like to know what course of treatment(s) anyone has had that has been diagnosed with both hyper and hypothyroidism.  

I apologize for the long post.  I am just at a loss here.  Thanks in advance!
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73 Comments Post a Comment
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549681_tn?1229728099
I'm not a Dr. and I know how confusing this thyroid stuff is.
Did they do any antibody tests?  That is pretty important before confirming a diagnosis!
Go ask for copies of ALL of your labs and post them here.
You should have TSH, Free T4, Free T3, TPO, TRab, & TSI

I hope others will chime in on this one.
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Avatar_f_tn
I was sort of there as well....I was diagnosed with Hashi's in March 2006 and was happily on levoxthryine for 10 months. In Jan 2007 I went in for what I thought was a sinus infection and two weeks later got the graves diagnosis after the battery of tests.  It's rare but can happen- my body's immune system is attacking a new part of my thyroid. In your case it looks like it's attacking two different ways.  I have been treated with methimazole to suppress my thyroid hormone production for two years now, but will probably have a TT or RAI in the near future.  I think in your case, killing your thyroid seems like the best option.
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897578_tn?1241724871
Just wanted to update my post on the forum.  I opted to have RAI therapy and completed it last Friday, a week ago.  So far, no side effects from the RAI.  I go back to the endocrinologist next week and then again in six weeks.  The only thing I can tell different is extreme sensitivity in my salivary glands.  Even toothpaste makes my salivary gland "spasm".  
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Avatar_f_tn
You have just told my story.  I am very perplexed myself.  I was first offed with both of the thyroid killing options when I was hyperactive thyroid.  I chose the medication, then a few months went by and I felt like the anti-thyroid medications wasn't even working anymore, so I was going to have the levels checked again, but the very next day my n3ck was swollen and I couldn't swallow food very well.  They took my levels that very day and I have NO TSH levels, my thyroid when from over active, to not active at all.  I am 31, I am so confused, and my doctor admits that he is as well,  He is an older doctor in a very small town, he has never seen anything like it, but he has heard of thyroiditus and I knw he will be working very hard to figure out what exactly is going on here.  I am glad though that I didn't chose the Radioactive Iodine.... just because of my age and the fact that you must also decide that you do not want to add to your family after that.
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393685_tn?1325870933
Now that you had permanent ablation some things need to be viewed.

With RAI - please remember to drink tons of lemon water to flush the RAI out of your system. It  does effect other body parts than just thyroid tissue and can make your permanent situation hard to control.

With RAI on Graves now you will have to most likely content to the Hashi attacks coming. They do not get suppressed in that procedure and can rage up with the Graves slows down.

This IS a difficult treatment and Block and Replace with medication is most likely needed. The antibodies of Graves will not completely suppress for a while so you caould swing on both levels for quite sometime and any given time and testing can be tricky.

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393685_tn?1325870933
concentrate on building up your immune system right now. A strong immune system is essential for this to stable out.
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Avatar_n_tn
I have also been diagnosed with both Hasimotto and Graves Disease.  I feel discouraged at times, but I can't let it get me down.  My doctor at the CCF has me on synthroid at this time.  He will continue to watch my levels, which also show a very low TSH.  My TPO and TRab are both elevated.  Have you visited an eye doctor that specializes in Graves Disease?  I am showing the beginning signs of Graves in my eyes.  I also have Sjogren's Disease, which is an autoimmune disease.  Our bodies are fighting ourselves, and keeping our immune systems up is definately an important step.  I do get an odd feeling that comes over me, and I sweat horribly which can cause me to feel a bit anxious.  Do you feel like that at times?  It feels good to share with olthers that are dealing with the same illness.  by Carol
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1487536_tn?1288119233
Greetings!  I, too, have been diagnosed with Grave's and Hashimoto's.  My weight and appetite fluctuates from week to week, my period is sometimes heavy and lasts for just 3 days while at other times is light and lasts for 3 weeks, my once-thick hair falls out...locks at a time and is about a quarter of the thickness it once was (and no sign of it stopping), I feel paranoid and anxious at times yet happy and content other times, one week I sweat profusely and then the next I am shivering, my skin is in a constant battle with being too dry or breaking out from my pores producing way too much oil, I break out in crazy, itchy eczema rashes depending on how hyper I am one day, and other times I am alarmed at how much water has accumulated in my joints, fingers and toes...I can't even begin to explain how frustrating these diseases are when I am 28 years-old, engaged, and trying hard to be happy and on top of the world while maintaining enough concentration and energy to successfully plan a wedding I seem to keep pushing out (because I feel tired, am always lacking sleep, and can't seem to remember all the intimidating tasks I have to stay on top of every day).  After a long road of confusion in all the many mysterious symptoms I was experiencing (including blacking out while driving due to heart palpitations, which caused prolonged QTs and arrhythmias), I was finally diagnosed with Grave's, Hashimoto's, and Thyrotoxicosis (my TSH levels are <.006).  After a stressful series of events at work and despite being on medication, I went through what I deem the worst experience of my life - a series of thyroid storms during a 3-day period where I experienced dementia, psychosis, extreme panic attacks, intense delusions, paranoia, a persistent resting heart rate of 188, and lost 15 lbs in just those three days from the hypermetabolic state I was in.  Following the thyrotoxic crisis and weekly blood works and endocrinologist appointments in addition to constant dosage changes in my tapazole and propranolol medications (to account for the constant varying TSH levels), my last blood work showed abnormal liver levels.  Hence, I am no longer on the medication (for the last week), am feeling extremely hyper all over again, and am scheduled for the thyroid uptake and scan with the radiologist tomorrow before my radioactive iodine treatment.  It has been a not-so-fun rollercoaster, but I am happy to finally say goodbye to the thyroid-madness (I hope)...even meaning I will forever be on synthroid.  I often times feel very alone in dealing with all the symptoms and having to pretend like I feel normal like everyone else...so it's nice to hear there are others dealing with the same frustrations.  My endocrinologist tells me there is no correlation between RAI treatment for hyperthyroidism and cancer, and she also tells me I will certainly be able to one-day have kids (as long as it is 6 months after the RAI treatment).  Has anyone experienced any significant side-effects/issues with RAI treatment?  Is this truly the best option versus TT?  Thanks!!!  :)
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Avatar_f_tn
I have been battling with Graves & Hyperthyroidism for the past 3 to 4 years.  I was on Tapazole or Methimazole but it would always come back.  I am scheduled for RAI this Friday and I'm still hoping I have made the right decission.  I am 41 years old and have 2 beautiful children.  If there is anyone who has had RAI or Surgery, any help on the subject would be greatly appreciated.  I would like to know what to expect afterwards & if it is worth it?  Thank you for all your help.
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Avatar_f_tn
I would be very interested in how your procedure went. I am 38 and have a vibrant 5 year old daughter. I have been dealing with my situation for 6months. I was told I have Hashimoto's and then after an uptake and scan that I have Grave's. I scheduled the RAI treatment and then cancelled the appt. I saw another endocrinologist at Univ of Mich and she told me that she didn't think I needed the RAI because my levels were all fine. That she didnt think I had Hashi or Grave's just some type of thyroid disease. Tested positive in August for Hashi's antibodies and the new doctor says she doesnt test for them because everyone has them doesnt mean you have it, ugh! The TSH was 0.10 on 11/30/10 and the TSI test says Grave's. I am hyper thyroid right now and have not been on any hormones at all through all of this( T4 and T3 normal). Just beta blockers. I had atrial fibrilation June 25th 2010 and thought it was from my thyroid. One dr said it could be an the other said no. I am at odds of what to do at this point, I'm getting 2 totally different . A third opinion....I know several people that have had the RAI and it has been successful. ALl the other stories are scaring the crap out of me...
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Avatar_f_tn
Just out of curiosity what were your antibody levels, were they higher than the normal range?  I have antibodies , but they are within the normal range.   Still not sure what is wrong with my thyroid, going for an uptake scan tomorrow so hoping that will give a bit more info.
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Avatar_f_tn
~LINDA, that's good news that your ab's are all in range, this just means that whatever autoimmune TD you have is not active at this time.

~Missy, your last endo sounds like she just transfered over from practicing podiatry or something. She sounds clueless with thyroid disease. I too have graves and hashi antibodies, but my thyroid panel(tsh, and free's) are all in range and i feel fine, so no treatment necessary for me. There are ''some'' endo's who will treat you based on symptoms if all your labs are good and you still feel like crap, but they are very rare. In the meantime, treat your body with a little TLC;

Vitamins-Selenium is VERY important as it reduces TPO,Ab's
excercise
proper diet
adequate sleep

Tlc can go a long way if it's implemented lol.
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Avatar_f_tn
Also, and this is just my .02cent. I highly suggest that anyone considering a permanent option go with a TT if you have nodules. The reason being;

Nodules grow
RAI may have to be repeated multiple times
Eye disease may become worse and protrusion is permanent

I have only read a handful of positive RAI stories on the net.
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Avatar_f_tn
Linda, I left all of my paperwork at work, Rrrr. The last time they were tested was August and neither doctor would test for them again, I did ask. I will let you know tomorrow once I have the results in hand. I hope they find out what's going on, good luck :)

Army wife, I tend to agree with you on the matter. I do in fact have symptoms and that's what she is treating, tremors, palpitations although it's not working very well, I'm on Inderal 10mg 3xtimes a day. I do have nodules and I feel like someone is choking me. I really don't know what to do right now. Any suggestions????? Is it worth getting a third opinion or talk to the first doctor and discuss it with her?

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How much Selenium should I be taking? Just what's in my multi-vitamin??
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At 19 I was diagnosed by US Navy doctors with Graves, even though I gained 20 #'s in 2 months.  I received I131 treatment in Jan 1980 and was told to eat on disposable plates and stay away from people while living on base going to school. It was quite the challenge. 2 weks later I went into this extreme hyper mode and 2 months later was put on synthroid.  I was on Synthroid from 1980 until 2008. I was never told to drink lemon juice, I was never told it could make me sterile and I was never told I would never be able to donate bone marrow. I became pregnant in Sept 1980 and had a healthy daughter in 1981. My son was born in 1985. Neither have any disfigurements or mental disorders. their biggest health issue growing up were seasonal allergies.
I heard about Armour Thyroid in 2008 and did some research and switched over to it. It was the best health decision I had made regarding my thyroid. Within 4 months I was back to my normal self (body metabolism, sleep habits, and energy levels) and my weight reduced 30#'s. Levothyroxine quit working for me. I have also altered some eating habits due to some of my research. Avoid Soy, soy Lecithin; in chocolate :-( ; peanuts, garbanzo beans/hummus, and pinto beans.  All these food products cause your body to not create the T3 properly and basically nullify any thyroid hormone replacement therapy you are on.
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Avatar_m_tn
I have recently been diagnosed with both graves and hashimoto's disease and I am only 26 years old.  My T3 and T4 's were in the 1000's and my TSH levels are <.006.  The dr. gave me propranalol for the heart irregularities and the tremors I get and also prescribed me Methimazole.  I told the dr. I didn't want to take the Methimazole because I am very sensitive to medications and I do not want to deal with the side effects such as a weakened immune system. I am in nursing school and spend about 20 hours a week in the hospital, and getting MERSA because of a medication I am on does not sound like a good option.  Then again, having hot flashes and sweating and shaking, not sleeping is not an option either.  I am not able to have the RAI at this time because there is too much risk involved.  The dr. said that because of the Hashimoto's there is a possibility of my thyroid just burning out and just having to take synthriod forever.  Does anyone know more about these two diseases combined and what the best treatment options are?
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1139187_tn?1355710247
Im glad i found this post and am sorry that it is an older one that was bumped.  I am just curious regarding the diagnosis of both graves and hashimotos at the same time.  My question is, the graves was picked up during a nuclear uptake scan, but wouldn't the blood work of shown positive for graves?  

This is very discouraging as I have a lot of the symptoms mentioned above but have not had an uptake done.  I was told I did not need this as I confirmed positive for hashimotos.  I would like to hear everyone's opinion on the necessity for the uptake testing?

Thank you
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Avatar_f_tn
Has anyone here tried a Gluten Free diet?
I, too have both Hashi's and Graves...but I have been on a strict GF diet for 3 months, had my Nature Throid ( non synthetic hypothyroid medication ) dose adjusted, and now I feel fantastic...I lost 7 pounds ( 132 to 125 ), have the energy I used to have, joint pain gone, etc etc...
I am trying to do this as naturally as I can...
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Hi Heather, I am very happy to hear about Gluten free diet, last thrusday my doctor send to the endocrinology hospital and I decide to take this Gluten free diet before I take any medication, I already take spirulina and realy hope with the right diet I going to feel better.
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1139187_tn?1355710247
This is still a very intriguing post to me.   I swing back and forth all day long. I'm hot, I'm cold.   I'm exhausted, I'm anxious.   Lose weight, gain weight.  Ears ring, ears don't ring.


I had the antibodies for graves and hashis but was told to ignore the graves value and to only use the hashi value.

Is there more information on this?   Anyone with first hand experience?
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1139187_tn?1355710247
I am trying to figure out if i have been tested for graves.  From what i can tell, these are all of my antibodies tests from the last year and a half.    Are any of these for graves?   It doesnt look like ive ever been tested.  



march 16, 2010
thyroid peroxidase ab  62   range  <35
thyroglobulin ab    251     range   <40

october 22, 2010
thyroid peroxidase tpo ab   241     <34
antithyroglobulin ab   100      <40

May 17, 2011

thyroglobulin antibodies  89     <20
thyroid peroxidade antibodies  470  <35

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535882_tn?1396580285
positive/high results  to those tests can mean either graves and or hashimoto's and /or hypothyroidism.
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1139187_tn?1355710247
Here is me

http://www.thyroidboards.com/hashitoxicosis/


I wish I knew how this guy ended up.
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Avatar_f_tn
So I'm sixteen and was diagnosed with both hashimoto's and grave's disease just before my sixteenth birthday. Not gonna lie this whole thing is scaring me and I have no idea what's going on in my body. I was put on Atenolol for the thyroid and methimazole for my blood pressure. I don't wnt to have the radioactive treatment but I don't know any other treatment methods and I really don't want to kill off my thyroid, I think I'm too young for this but I don't know. I'm just really confused and I have already gained fifteen pounds after being put on my medication. As a sixteen year old girl I'm getting self conscious which leads to my anxiety and mood swings but I get hungry every hour on the hour due to a high metabolism. I just want some advice please!
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393685_tn?1325870933
Methimazole is for the over production of thyroid not for blood pressure although it can effect it.

The condition you are experiencing could be related to Hashitoxicosis but your post is not descriptive enough to truly say much.
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Avatar_f_tn
well thank you and my doctor just told me it was for my blood pressure incase my heart begins beating to quickly. What else would you need to know to link me to hashitoxicosis?
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393685_tn?1325870933
Get the lab report of your lastest draw. Your parent has the right to request. That's really something to see to know where to lead suggestions for you - and the parent responsible for you.
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Avatar_f_tn
Thank God for this blog!!!  I am learning more on here than any reading I have done online.  I do realize that we all have different reactions so I'm not just taking everyone at their word, the wonderful ladies on here and doctors who only do studies.  I was diagnosed in 2007 at the age of 27 with Hashimoto's though I am sure I was suffering from it after I had my son in 2006.  I was not only suffering from practically everything associated with Hashimoto's but also many symptoms of Grave's disease.  I was just diagnosed this year with Grave's and have been referred to have an RI.  I suffer horribly from not being able to lose weight and extreme fatigue and then I will be hyper for a few months and even lost over 40 pounds over a year ago.  Then it struck again and I gained it all back.  I lost an entire semester of school to Hashimoto's and so I went on the attack. That is when I was seen by a new specialist and he finally figured it all out, with my help!! LOL  I am very curious about having the RI procedure done and what others have experienced.  Thanks again!!!
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215461_tn?1331866365
I just want to say that I suffer from most of the same symptoms as most of you.  I have also become gluten intolerant during these swings.  I haven't had gluten in close to a year and it hasn't done a thing for my thyroid unfortunately.  I wish it was the magic cure.  In the mean time I have developed another rare autoimmune disease called lichen planus.  I wouldn't know if I have more, because my docs have given up.  I am 32, so I understand what most of you are going through. I'd love to hear a success story lol.
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393685_tn?1325870933
Yes - gluten free isn't the source of ridding it all but its a grand step in the right direction for sure for many.

Swings of both antibodies can be the worst thing imaginable and when someone actually has that happening the only word that can come close to explaining is He//!

There is no treatment, surgery, or one medication that stops the progression of it but looking deep into the autoimmune disease and you attacking the root why the antibodies are raging to suppress them first - then monitoring the function is the best way to really overcome the swings.

There some major tips others found to suppress these attacks : Supplement with selenium, eliminating gluten and milk products. Building up the vit D in the body so on a lab report is scores 80 to 100ish on the references. Eliminate all stimulants like coffee and liquor. Smoking is bad. Another tips heavily talked about and I personally had done was some ying/yang and acupuncture therapy concentrating on the liver release of toxins, That was when I really saw improvement with doing the other things above with it.

With medication to cover the symptoms, but does not stop the attacks without changing other things first is called a "block and replace" method giving you two completely opposite thyroid meds counterpart the onset of which autoimmune antibody is attacking at one time.... This is almost impossible to achieve any wellness because the drugs require liver filtering and that is why usually this method is short timed.

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393685_tn?1325870933
This disease stems from a weak and polluted intestinal track and immune system also. Giving those a serious punch back with proper care is essential to get the immune system a chance to kick off those attacks inside the body also. Acidophillus helps along with immune support builders.
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1139187_tn?1355710247
Hey I wanted to add to this.  My body has a routine it follows every day.  Personally it does the same thing regardless of if I eat gluten or not.  My countless hours of research on the net shows a lot more proof that eating gluten makes a hashi feel worse.   However, I get the same wave of death every day regardless of if i eat gluten or not.

While being gluten free sounds like a good idea, it is very difficult to achieve this.  I have found some decent gluten free foods in my attempt to be gluten free.  Amy's foods makes a great little pizza on cornbread crust for example.

I am wondering if eating gluten just makes a person feel overall crappy all the time, or if it increases the magnitude of bad symptoms when they come on.  

Bruce
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Avatar_f_tn
Like most of you, I too was diagnosed with both Graves and Hashi's. First came Graves. Had RAI treatment. Slowly, my levels began to even out but my pituitary (i may be using the wrong name here) reading maintained that I was hyper. I had a general doc tell me I was fine as well as one endo. I saw an endo at Mayo, who specializes in Graves and he was still unhappy with results. Wanted second RAI. I did not want to repeat. Since my levels looked OK i just wanted to give it more time to see if my body leveled out. My doc was pretty confused at my test results were sending mixed messages, so he tested ab's and said that i also have hashi's. He wants me to have surgery to completely remove thyroid. Rationale is that it is very hard to treat with medicine as there is no way to predict which way i will swing. He says both autoimmune diseases attack the thyroid. With the thyroid gone, they have nothing to attack (except potentially the eyes with graves.) It seems logical enough, but I am very hesitant about surgery and completely removing the thyroid.  Has anyone here had surgery or contemplated it? Having been through everything else (PTU meds, RAI) part of me just wants it over with, but I don't want to make the wrong decision! In addition, I am trying to have another child so I know I wont redo the RAI.......Thanks!
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393685_tn?1325870933
Removal will not remove the attacks. Not all all and that was a quick response from the doctor that requires you to do extensive research.
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1731437_tn?1310315005
I was diagnosed with Graves June 2009, but managed the symptoms very well with exercise, eating healthy and natual supplements.  I was in an auto accident April 2010 and was bedridden for months.  Once I got back to work, I realized my Graves Disease symptoms had become worse - almost unbearable, so in May 2011, I had my labs done again (ultrasound, uptake scan) and my TSH was still 0.01 and all the labs and tests still said Graves Disease.  My doc scheduled me for RAI, but after researching daily throughout May 2011 and most of June 2011, I opted for the Total Thryoidectomy route and had the TT done June 23, 2011.  I am sooooo glad I did it.  I feel back to my normal self already and am going back to work Monday, after having 2-1/2 weeks off.  I am on 100 mcg of the generic Synthroid, called Levothyroxine and so far so good.  When they got the pathology report back, they said I had Hashimoto's, as well as Graves Disease, which is rare, but as we know - it happens.  The treatment for both are the same - After TT (or RAI), go on Levo.  Also, I went to 3 different surgeons for a consult before chosing one.  When I told them I didn't want to do the RAI, they ALL said the same thing - They all said it is so much more difficult for them as surgeons to remove the shriveled up thyroid of those who had the RAI, and most patients said they wished they would have just gone the TT route to begin with.  I have read where many who did the RAI said they are still on a rollercoaster ride after years, whereas those who go the TT route are leveled pretty quickly on medication.  I have read where many are glad they had the RAI and where others are glad they did the TT.  If the scar bothers you, then go the RAI route.  If you can find a surgeon who will place the incision low, and can assure you of an incision of 2 inches or less like mine and you are okay with that, then go the TT route.  BUT, everyone should build their immune systems up and everyone should at least TRY the methimazole/PTU route first and also find a natural endocrinologist.  RAI and TT should be the LAST resort.  It got to the point for me, where I had a choice - take the quick fix through TT or go out on disability.  I am so glad I chose the TT.  I feel great!
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1139187_tn?1355710247
Holy cow....what an amazing post!
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372751_tn?1310361905
So glad I found this blog as I am dealing with some interesting thyroid issues as well. Everyone in my family has thyroid issues but they are not all the same issues LOL. My paternal grandmother had Graves, my uncle Hashimotos, and my dad some other disease (not autoimmune) that causes hypothyroidism. My mother was recently diagnosed as having hypothyroid but they aren't sure why at this point.
My "fun" began about two years ago when I started sweating like CRAZY, breaking out like I was 15 (I was 32 at the time), shaking, having very high resting heart rate and not being able to sleep more than 2-3 hours at a stretch besides being exhausted. My GP thought I was going through early menopause but instead my TSH came back at 0. I don't remember what my T3 and T4 were at that time but it resembled Graves. She ordered an uptake scan which showed that my thyroid was actually having a slow uptake. I was told to just "ride  out" the hyper symptoms with beta blockers and that the thyroid was "burning out". Sure enough a month later I had the exact opposite symptoms and my TSH had gone to 45. Again I can't remember my T3 and T4 at the time but they had also shifted to reflect hypothyroidism. I ended up on a dose of 100mcg of synthroid that worked great and kept me stable for a year.
Now the past 6 months or so have been hell. About every other or month of so I go extremely hyper and we decrease my dose. Right now I am on only 25 mcg of synthroid. After the hyper phase I crash into hypo and I crash hard. It is really making life difficult in so many aspects.
Right now my TSH is .02 and my thyroid is very enlarged. You can definately see it without touching it. I had an appointment last week for blood work and they couldn't really find my thyroid and then when I had my follow up on Friday it was HUGE. ??? They aren't sure what is going on and my past appointments to endocrinology have been a bust. "This is typical for Hashimotos".
I had an ultrasound Friday and am waiting to hear back from that. Of course the tech was pretty tight lipped and would only tell me what I already know...that my thyroid is pretty inflamed.
In the midst of all of this my morning cortisol came back at 4.5 which is critically low. So, I had an ACTH...normal. We redid the cortisol...5.2 still low. ???? We are at a loss. Seems like a few things might be going on here but not sure what. In addition to this i have gastroparesis so life is not much fun for me now. I start a new job soon and would really, really like to feel somewhat normal.
ANY idea of what to do next???? Thanks in advance!!
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1139187_tn?1355710247
wow...  very familiar sounding.  I go back and forth as well.  Up and down, back and forth.  Same symptoms as you.  I had an ultrasound and was told that the right side was on fire, but the left side wasnt as inflamed.  At this point I am seriously considering a TT.  Every time i feel bad i prey for a TT, but then as it passes IM ok.  Its like a daily bought of torture every single day.  I try to keep myself busy so i dont notice it as much but it is very difficult.  bruce
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I have a 16 year old daughter who was diagnosed with hashi and graves.  She has symptoms of both.  She has no energy.  I feel like I just want her to get the thyroid removed.  She was such a great athelete.  She had so much potential playing college sports.  Now this seems like a never ending journey.  She is getting a second opinion in Aug on her treatment.  She now takes 15mg of methimozole 3x a day.  Doc just took her off beta blocker.  Doc said her levels are more regular.  Then why does she not feel any better and she still has a goiter.  I think this all started when she was about 14.  Then when she got her first period at 16 her symptoms got very severe.  Tremors, heart palpatations, hunger, out of breath, tired, she gained about 40lbs in one year.  Should I be eager to remove the thyroid.  Will it make a big impact on her symptoms?  Is it ok to push her to exercise while feeling so badly?
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I have Hashimoto and after being ok for a few years (I am on a diet for endometriosis that may have helped with Hashi, I avoid gluten and dairy as much as possible) it went out of control the last few months, after having too much iodine from seafood. I've been doing a ton of reading on the internet trying to get better. I came across a blog that this very nice lady Crystal posted, she got her Hashi under control naturally, to a point where her tests came back perfectly normal. Very simple treatment, she took selenium and vitamine E, copper and Zinc, and went diary free. She is also avoiding soy and iodine. I started taking selenium and vit E right away and I avoid dairy anyway, no I cut it out completely. I started feeling better within a few days, and I hope I will get even better over the next weeks. Quite a challenge finding food to accomodate my diet, but it's worth it. If anyone is interested, her blog is called Hope for Hashimoto's disease. Super interesting and inspirational.
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I also have been diagnosed with both hashimoto's and graves.  I was wondering if anyone knows if there is any research being done about the two or if there is any specific dr (besides a generic endocrinologist who specializes in having both at the same time.  Thanks!
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I had the similar experience. I was diagnosed with hashi 8 years ago and had always been hypo, yet I suddenly became hyper 3 years ago and the doctors said that I had graves. I am very perplexed also. I am now on Tapazole medication and I think it works for me, my TSH and all other hormone levels are coming back to normal ranges, yet the antibiotics are still high for sure. I am constantly low on ferrotine which I believe is a sign of hypo frrom hashi. Generally I am feeling ok. My experience with the disease tells me that it is the most important to stay in a peaceful and happy mood. All the sudden break-outs of thyroid malfunctions occurred during the period when I am depressed. The RAI is not an option for me because of the graves-related eye symptoms so the only option other than medication is surgery although I really prefer not to do surgery right now and would like to give my thyroid gland a chance to adjust itself under medication and a healthy lifestyle.
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I was referred to an endocrinologist for hyperthyroidism after noticing symptoms and having my primary care physician do a blood test. The endo did an ultrasound on my thyroid, ordered blood work, and put me on atenolol and methimazole. We discussed surgery and RAI, but I decided that I wanted to take the anti-thyroid medication first, and so far so good. The test results came back that I had both Graves and Hashimoto's. While they were drawing the blood to check my thyroid levels, my doctor also checked for other auto-immune diseases such as celiac's, but I am happy to say that everything else came back normal. I did not have to do any uptake scans. So far I have been on the medication for one month and feel much better than I did, my resting heart rate is down from 106 to 69 and I have energy again.
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I am a mother of 7 year old triplets and about 6 years ago I was told I had graves. My doctor then recommended to take the thyroid, at that point decided to get a second opinion. The second doctor told me I had graves and hashimoto's. It has been 6 years since I have gone up an down. The graves has gone into remission several times. A month ago, I went through several tests and the doctor told me the graves is in remission, again. For the past 3 weeks I have gained about 7 pounds, my head hurts and my face is puffy. Don't know what to do at this point. It seems every time I had gone to the doctor for the past 6 months my thyroid levels have been fine. Any thoughts? Also, do you have any recommendations on dieting?
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Please post those thyroid test results that are "fine", along with their reference ranges,  and let members see if they concur.  
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So Excited to find some people like me! It was so hard to find info on the combination!!  I apologize in advance for my long post!
AlwaysClan, remember that your 'normal' is not everyone's normal.

I have Hashimoto's and Graves too.
Mine went undetected for quite a while as I cycled up and down. I was hyperthyroid as a teen-ager and my TSH was checked but appeared normal, so I was treated for Asthma, Depression, ADHD, etc. until the PA in my Dr.'s office noticed my neck was swollen and did the full panel of thyroid tests and checked me for the markers for Hashimoto's and Graves.

I can't stress how important it is to have the FULL PANEL!! My endocrinologist told me that I would have been diagnosed earlier if someone had seen all of my numbers instead of just my TSH. Also, have your daughters checked (not sure what age but keep on top of it) and ask if they will do the markers for the two auto immune diseases. Not as common in son's but it is passed along especially from Mother Daughter. I already had my 19 year-old checked before she went to college so she has a baseline panel in her medical records.

I opted for the Radioactive Iodine (I have two beautiful teen-aged daughters and am done growing my family.) My doctor told me it was my best option for these reasons:  The thyroid is gone so the hyperactive is gone. The hypo is a given (as that is what hypo is - the absence of enough thyroid hormone in the system.) The hyper is very hard to treat/regulate and can go up and down and has to be watched more carefully. Synthroid is very safe and very close to true thyroid hormone. It is much easier to start from a 0 level and find a good place than to play with the two diseases that can appear, cycle, go into remission, etc. I have to mention too that my Father had had Rad. Iodine many years ago and I worked in the Nuclear Medicine department at George Washington Univ Med Center so I am very familiar with and was not afraid of radioactive iodine treatment. (In fact the med's I took to bring my level down made me itch so bad I was bruising myself scratching!)

Now, with all that, I know that many of us need more than a year to get regulated on the meds (I had my Iodine in Aug. and I'm struggling at this point) and I've read that some people do have to repeat the Rad. Iodine. My Endo. gives me a blood slip each time I see her and tells me that I can go get my blood drawn if I feel that I am having symptoms and call and she will see me.

I have an electronic blood pressure machine at home, which I highly recommend!  I had my blood drawn yesterday, I have a fluid-y cough,  feel wheezy, excessively tired, my migraines are crazy, my diastolic bp is consistently around 62 and my pulse is 85 resting (109 - 112 if i get up.) All symptoms that my heart is not working well. I always say, When your thyroid is not working well, It's like running a car without oil! It affects everything!
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Thank you for this blog. My new endo also thinks I'm both Graves and Hashitoxic. I was diagnosed with Graves/hyper when I was 18. Was told to do RAI but didn't want to do it?  I leveled out and went off all meds for 20+ years. 20 years in remission. I'm now 45 and after an extremely stressful month, my TSH went to zero (0.00) my hyper is back. Went on meyhamizole and felt awful,  After a bad endo and long wait for appt with new endo, the meds made me very hypo, now TSH is 10.5.  My body feels awful and now have growth on my neck, extremely enarged thyroid. Just went to new endo at NYP hospital on NYC and she thinks I'm both. I'm off meds now to get my TSH back down. I have to get iodine uptake test and see a thyroid eye specialist. My vit d I so low I'm on 50,000 IU p/week plus 1,000 D3 per day.  I am trying to handle this naturally...acupuncture, yoga, diet....I don't want the iodine treatment.

My heart goes out to all of you/us dealing with these symptoms....
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im in the same boat as you have Hashimoto's  and the anti bodys for graves the weird thing for me is that i have more symptoms of graves they have me on pills to correct my levels  but still have the symptoms of graves if you decide on surgery to remove you thyroid you will basically just have graves and will need to be on pills for the rest of your life. side note a guess but you have blood type b "i do" its more prone to have auto immune disorders  turns out i have pcos and fibromialga also and i might have wilsons also doing test as we type. keep a list of your symptoms  that are not  "normal" will help in the long run with your doc good luck and god bless
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ok ... heres whats up ... im a 34 year old male recently diagnosed with Hashimotos ... it has affected almost every aspect of my life, and is posing a HUGE problem for me as an adult. I have no insurance (like so many others) and seeing an endochronologist is a near impossibility. I went for 30 years without any meds, and started taking levothyroxide when I discovered what was going on. My life went to hell, and I was without my medicine for almost 2 years, at which point things got way worse. Ive had my thyroids removed ... (they left just a piece of one) and I recently talked a dr into giving me a script for my meds again. I dont have a way to pay for constant endo. appts to regulate my med intake, and the mood swings, muscle aches, anxiety and irritability have made me loose several jobs ... im at a loss here ... i dont need links for state help stuffs ... im walking that road for a while now. there really aint much ... im hating this so bad ... :/ anyone?
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Hey.. I was just reading your comment and I think you should look into this website stopthethyroidmaddness.com it is so informative and I truly believe you can get a lot of answers.. Plus look into seeing a doctor who treats with dedicated thyroid..
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THE ANSWER TO THYROID problems whether they be hypo or hyper is easy.  The answer is IODINE and in most cases in the form of LUGOLS aqueous solution in the strength of 10%Potassium Iodide & 5% Iodine:  Please refer to the following link;   www.health-science-spirit.com/iodine.html
Also google IODINE FOR HEALTH by Donald W. Miller  and there are many more sites but these ones are very good.  Iodine is also good for fibrocystic disease, mammary glands, and almost everything and works best with magnesium, but best to get deficiency tests to top levels of minerals up.  A Must Read is the latest Nexus Magazine, there is a good article in there about IODINE.  have a good future.
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Hi everyone, thanks for your valuable input here! I am a 53 yr. old female..who has advanced Systemic Mastocytosis. Very rare...affects my organs, bones, muscles, skin, etc...everything. Never had thyroid issues until about 7 years ago, the "Masto" flared up real bad and I was bedridden for months. Dr. didn't think I'd make it. In the process, I developed Hyperthyroidism....but I'm a high risk patient and tolerate few meds. So I use propanolol for the heart rate but other than that....just my other meds.. And the thyroid just amplifies my "Masto" symptoms. I am 5'8'' and always maintain my weight between 120-125. About 5 years ago, I was down to 100lbs. Then, last fall, I had to be on steroids for 2 days for an mri, and within less than 3 weeks, gained 20 lbs which I can't lose! It is painful and putting additional pressure on my organs, lungs, heart etc. Last week my new dr. (recently moved), said my Thyroid level which should be 34, is
1, 418! and that I have Grave's and Hashimoto's. I too have blacked out driving a few times, have had all the other symptoms mentioned here. But it is so difficult because so much is amplified symptoms of the "Masto" disease. I already have compromised organs, can't eat solid food, and take narcotics everyday for pain. Thyroid surgery scares me, because I am so high risk and don't heal well. But due to the state of my organs, esp liver...the meds concern me too. Last fall, They also found a small brain tumor, in addition to the growth on my liver and on one of my lungs.
Anybody know the likelihood of my thyroid burning itself out? How long that might take? I will see an endo here in AZ, but will be going back to WI for a visit in a few months, and will see my former dr of 25 years and an endo there, to get a few opinions...but this sounds so complicated and I'm ALREADY a very complicated case...how do I know a dr. will guide me in the right direction? This is so upsetting, esp. on top of my already poor health. I was always an "energizer Bunny". I've had to quit working and am now on disability. The thought of additional major medical issues is overwhelming. I am a minister and try to cling to my faith, but sometimes it all feels just too much. And I miss my work! Saying a prayer for all of you who share this condition. Appreciate your input.
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I have been daignosed with Grave's for a number of years but I found out about Hashimoto last year. In my case they were battling which made my level stable. That is until, I will be low and have to re-start meds. I have been experiencing some side effects recently of my level going off the track which have me scared. I remember all of the choices in the past and I am not looking forward to finding a new balance. It took years for me to balance off of the meds, but will it return and never balance without surgery is my fear.
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Ok.... I was diagnosed with Graves 5 years ago. I opted for PTU treatment. Doing great for about 4 months, then diagnosed with hyperparathyroidism. I finally agreed to an exploratory neck surgery since after dozens of different tests I was told they could not locate the bad parathyroid which was basically killing me. I have Graves ophthalmology so  RAI was not suggested as it can aggravate this disease to the point of not  being able to close your eyes ever.. I had the 8 hr surgery( long story ). Total thyroidectomy and removal of one huge parathyroid. Started on synthroid and it almost killed me, bad reaction to the binders used. My endo dumped me not 3 months after surgery. I was told I was crazy since I could not take synthroid. Found a wonderful new endo who got be back to good health, well until a recent  family crisis and stress. I now have been told I have Graves & Hashimotos and I do not have  a thyroid!!!! Going for first ultrasound tomorrow. I have hyper graves symptoms and labs, but terrible weight gain and some labs presenting as hashimotos..... What to do next? All I know is I am staying positive, life is too short.. Thanks so much for listening, finding this site makes me feel better as I know I am not alone :)
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You've attached your post to a very old thread.  Most of the posters on the thread no longer participate on the Forum.  Your questions will get much more notice and response if you will click on the orange Post A Question button at top of page and re-post.  
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RAI is awful. I had mine done at the age of 12, and my symptoms, now better defined as re-activeness, or lack their of, to the Levoxyl in combination, with my bodies ability to fluctuate the conversion of synthetic T4 medications to T3, put me in the exact some boat as where I was before. I have been in the ER, I have been damn near comatose for years, I have had a heart attack, and prior to, as well as currently, flip flop around from TSH's of zero to a 66 TSH level without changing my dose. It takes a while for a shift that great but I assure you I have had those fluctuations and everything in between in periods shorter then 3 months. I can feel the slightest of variations in my thyroid levels & entire processes of my body throughout a course of a day, sometimes an hour.. Whether the autoimmune disease is using your organic god given thyroid glad to warp and distort the functioning of hormones, or the synthetic hormone they pump you full of for the rest of your life post RAI, it makes no difference. The only thing that helped me stabilize my thyroid functioning was an EXTREMELY healthy diet and cosmetics; all organic, non gmo, and non processed, in addition to no NO WHEAT< DAIRY< OR SOY. All vitamins are from whole food organic sources, never synthetic grocery or big chain vitamin store brands (ONLY FROM HEALTH FOOD STORES; Traders Joes DOES NOT count) . In addition, I drink only distilled water, take no medications other then levoxyl, and to get TONS of exercise, especially in building lean muscle.....Medical THC work wonders. I have NUMEROUS sources, individual case studies, confirming  this. It can also prohibit reverse t3 and the lack of t4 to t3 conversioning (which you will probably have) after RAI. Cures Wilson's syndrome ; ) Take care,
Current MD/PhD  student; origionally from from Santa Barbara, Ca
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Hi Way 2 Silly

None of us with thyroid problems are silly, it is the people who try and treat us I question sometimes??

Was it on the TSI tes that gave them them "oh" you have both or was there some other tests that proved conclusive the result.

MaryP
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I also wanted to ask did you have any other issues that they tested to prove the result other that the blood tests?

Thanks
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I also wanted to ask did you have any other issues that they tested to prove the result other that the blood tests?

Thanks
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I doubt that you will get a reply from Hi Ay 2 Silly, since we haven't heard anything from her since way back in Feb.
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Thanks for your response, very much appreciated.

I have never been on one of these blogs before so i just asked her as it was the same.

If any one can help me I would be very appreciative, no one seems to be able to tell you anything.

Thank you
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I am not quite sure what you are looking for, so let me just give you the info on tests that would be important in trying to diagnose thyroid status.

For Graves the test is TSI.  To determine if Hashi's is present, the tests are for the thyroid antibodies, TPO ab and TG ab.  Sometimes an ultrasound of the thyroid gland also helps to determine if there are nodules present.  

To evaluate the status of thyroid hormones, the best tests are Free T3 and Free T4 (not the same as Total T3 and Total T4).  Free T3 is the most important, because it largely regulates metabolism and many other body functions.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

There are also reports that the very best measure of tissue thyroid levels is the ratio of Free T3 to Reverse T3, so RT3  might be worthwhile to test also.  

Since patients with hypothyroid issues frequently are too low in the range for Vitamin D, b12 and ferritin, I also suggest you consider those tests.

Also it would be good to keep firmly planted in your mind that a good thyroid doctor will treat a thyroid patient clinically, for symptoms, rather than just by test results.  
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what are the symptoms of graves in the eyes?
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I am on a GF diet also and feel much better.  They are trying to figure out which one I have...Hashi or Graves.  I also have a 3X3cm nodule on my right side of my thyroid. AB are elevated.
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I'm 21 and was diagnosed with hypothyroidism just last year and have been on levothyroxin (levothyroxine) since then, I had no idea anything was every wrong with me, makes me think i've had this all for years and never noticed. I dont exactly understand what people are saying on here as far as they couldn't handle it any more, or a roller coaster of symptoms. my blood results came back and my doctors says she has never seen someone have both graves and Hashimoto so I see an endocrinologist next week, I am terrified, the only real symptom I have is i am usually tired. I would have never known I had anything wrong or that anything had changed, any advice on questions I should ask? or what I should know going into that appt? I appreciate everything!
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I was diagnosed with graves in March of last year. Endo suggested RAI immediately due to high heart rate and other symptoms that were out of control. I reluctantly agreed and it has been hell ever since. Now I have tested positive for both graves and hashi's. I swing back and forth from week to week and month to month. I was taking Armour for hypo for about 3 months and went back to hyper. Dr stopped meds in January. Just had to go to the emergency room 3 days ago. Heart rate was 188, my head went completely numb and the muscle spasms were so bad that my whole body was twitching. My TSH was 29, so they put me back on synthroid, a steroid, and propranalol. I am so tired off fighting this disease! All of my other hormones are also involved. Adrenals are high, progesterone and estrogen are low. I am to the point I just don't know where to turn for help. I feel like everyone looks at me like I'm crazy. My eyes look horrible and no eye drops seem to help. I have been really sick and have had pneumonia 5 times within the past year. Not one Dr seems to see a connection. I just want to give up. RAI did not work and TT is out because of my heart rate. They say with my size, heart rate and other infections that I could not have surgery. Anyone here have good results with alternative treatment?
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I'm 21 with hashimoto and graves disease, I was actually diagnosed when I was about 14, I bounced between hypo and hyper thyroidism for about 6 years until I turned 18 right after I graduated high school and had to get two radioactive iodine treatments. It was scary because I was, well am so young. I still don't understand most of the stuff that goes on with my thyroid. But I went threw three big thyroid storms when I was 15-17 and they felt more like strokes. I had night tremors, paranoia, there would be times when I couldn't breathe right. It's been the scariest thing to happen to me, I found out my mom has it to but it's not as bad, they did a biopsy thing on her where he poked her in the neck with his finger and jabbed a needle in her neck. I could hear her crying in the next room, scary. And going threw high school? Oh my, I was big and bloated and now I'm thinner now than I ever was but I still have some issues keeping my weight down because I gain weight so fast. The last time I went to my specialist he did an ultrasound and found numerous nodules or goiters? He showed me but didn't say it was bad/good. Should I be worried? Where can i get more info on my disease?
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I see my endo tomorrow. As I have hashimotos but am sure I have graves as well. I have been in a week long swing of panic no sleep hyper ness followed by extreme exhaustion. Heart racing. Shortness of breath and general feeling of impending doom. Also suffering adrenal fatigue and waiting on tests for celiacs lupus anemia insulin resistance and tons of other things.  Is there Anythjng I can do for this panic feeling. To calm my system.  I am not taking my armor today. I'm on a high dose of 150 was on 180 and prior to that tried 240
Which I swore would kill me
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This is a very old thread.  Please go to the top of the page and click on the orange "Post a Question" button.  You can start your own new thread by doing that, and we can address your individual concerns.

Please post recent labs with refeence ranges when you do.
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where is this info from? can i have the source of the not eating the certain foods b/c it nullifies any thyroid hormone therapy?
thx so much
***@****
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so is was diagnosed with it like 5 or so months ago and they are making it seem like I've had all my life and I'm barely 13
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Just started to cry reading this..... also recently diagnosed with both and couldn't figure out why I was such a mess!!!  Thank you all for your posts.... endocrinologist isn't treating anything right now but wants to repeat tests in -12 weeks.... feel like that is a lifetime away!!  My TPO, antithyroglobulin antibodies and TSI  are through the roof!!  ANA is also.  Original TSH <0.02 two weeks later 0.28.  Free T4 and Free T3 are low normal.  If the TSH is low again in 8-12 weeks then we will do the radioactive iodine uptake study.  SOOOOO frustrated that it takes so long to figure out what is going on with me!!  
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