[Sandy40]

#1060756

Hi,

I was diagnosed in 2006- 2007 with Graves Disease, it has been up and down for me since then, however had a long period of remission after pregnancy.

My main problem now is that my brain is not functioning, I have a slow and retarded cognition, I am not responding to medication, my eyes are swollen, protruding and move up and down on their own, I have mental fog, concentration problems, tremors, shakes and pain in muscles.

I have developed slurring of the speech and stuttering, and a compulsive behavior due to the hyperactivity, I also have insomnia, irritability and agitation –

I have been told my illness has progressed ? my endocrinologist recommended surgery and I have seen a surgeon, I am terrified as everybody I know who has removed their thyroid seem much worse than before.

Has anyone here had the surgery? have your symptoms worsened after the surgery or improved?

[Kimberly]

#1184563

Hello and welcome – we have a number of regular posters here who have chosen surgery as their treatment option. Hopefully, they will chime in, but you can also use the “search posts” feature when you are logged in to search for keywords such as thyroidectomy, “thyroid surgery”, etc..

You noted that you are not responding to medication, but hopefully, your endocrinologist is looking at Free T4 and T3 as well as TSH in making this determination. TSH can remain suppressed in Graves’ patients and is not a good benchmark to be used alone in monitoring the course of the disease.

Also, your primary care doc should be looking into other potential causes for the slurred speech. I’ve heard of this more commonly with hypo than hyper – but there are many other causes as well, all of which should be checked out.

Here are a few resources that will hopefully be of interest as you make your decision:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

American Association of Endocrine Surgeons:
http://endocrinediseases.org/thyroid/surgery.shtml

GDATF Bulletin:
http://gdatf.org/about/about-graves-disease/patient-education/thyroidectomy-for-graves-surgical-option/

GDATF Conference video:

[AzGravesGuy]

#1184564

Hi Sandy,

I hated my Graves’ Disease too. Almost a decade lost to the physical and mental chaos it brought.

My story is here:

http://www.gdatf.org/forum/topic/42783/

Surgery ended the Graves’ assault on my body, starting the first day.

Now after a few years of rebuilding and relearning, I am stronger and more like myself than I have been in more than 10 years. My life has only improved since surgery. A near reversal of every symptom I ever had has slowly developed.

Find an experienced surgeon you like, one you trust.

IME, surgery is the quickest way to win the fight and resurrect what’s left of your life. Once I got stabilized on replacement hormones (which took time but patience paid off), life went on and the symptoms slowly disappeared.

A lot of posters on here disappear after having TT. Why? Because life goes on.
After having the failed RAI and then the surgery, I am surgery’s #1 fan.

I wasted so much time being afraid.

[Liz1967]

#1184565

AZGravesGuy is right. Not a lot of post thyroidectomy people on the boards because they have moved on with their lives. I had a total thyroidectomy, I feel totally normal. It hastened the burnout phase of my eye disease as an added benefit. Best decision I ever made.

[Sandy40]

#1184566

Thank you all for your help, I have been told I am in between Hashimotos and Graves while I am taking neo-mercazole.

My stuttering started at this stage so it could be the Hasihimotos, I will do more research in regards to this..

Thank you again for your help,

Note: I just found the website endocrineweb and it has articles that shows Graves Disease causes delayed speech, stuttering and slurring, If interested you can click on this link:

http://www.endocrineweb.com/community/hyperthyroidism/1179-hyperthyroidism-speech-disorders

[snelsen]

#1184567

Sandy, I just logged in…was dealing with all of the when AzGravesGuy was active. So a big hello to him!

I chose surgery, a thyroidectomy, and it was one of the very best decisions I have made in my LIFE! AS others have said, you need to be sure you find a surgeon who “does” them with regularity. My understanding is about 50/year is a good number. You can ask them, they will tell you.

I am someone wanted to move on with my life, so “when in doubt, get it out, ” fit well with my general philosophy

I have neve regretted it, could hardly WAIT until that surgery date. You need a bit of help after surgery, one week works, two is better. I take Synthroid, have labs now and then, and it’s all good…really!

I am puzzled that you say you know so many people who have had this surgery, and have had bad results? “Really????”
Dunno. I don’t know anyone, ever, who is worse than before.
I was so so so so glad to have it done. I have never looked back, except with gratefulness that i did it as soon as I could.

My two cents! I had all your symptoms. It seem you will NEVER be ok again. But you will be back to your old self with intervention. All of this is up to you, it is your decision. I wish the the best. It is hell to feel like you are feeling.
Shirley

[Sandy40]

#1184568

Thank you Snelsen for your help and for sharing your journey with graves, well I know people from work that ended with damaged vocal cords and did never fully regain their voice, also after removing their thyroid the swelling and the eye issues continued. The baker down the street had a few strokes after the operation and someone at the local school had two heart attacks in the last two years all caused by Graves thyroidectomy. I believe they could not control their levels of T3 and T4 and had the thyroid removed while having an excess of these hormones. This is why I believe is important to have low levels before a surgical removal however my levels are hard to control at present even with a good diet and with doing everything I can to get better.

I will be doing more research regarding my options, I have myxedema and my face shape an body shape has never gone back to normal. I had a good weight before this illness, I am now considering extreme radical measures to deal with these hormones but I will give conventional medicine a chance to make me better first. I lost 6 Kg in a month but now I have put 3 kg in 3 days with the medication increase of 10mg of Neo-mercazole 6 times a day.

Thank you again for sharing, is wonderful to know that I may return to normal one day , I am so sick and is hard to see the positve but I am sure I will get better.

Sandy40

[Liz1967]

#1184569

Sandy40, just my opinion, but if I had all those problems, thyroid would be gone! Post surgical complications, for any surgery, can be caused by many things, including general anesthesia. The eye issues run their own course, but studies have shown the antibodies that attack your eyes go down after thyroidectomy, usually within a year. While the eye disease stops, your eyes do not usually return to normal and surgical fixes are necessary. Surgeon will be sure you are on enough antithyroid meds to be hypo at time of surgery. Synthroid is pretty easy to dose, beginning dose by weight, adjusted thereafter. Remember you would not have a thyroid putting out too much or too little hormone messing up your dosage like you do on antithyrod drugs. No supplement or diet will fix this. Sometimes it may seem that way as the disease waxes and wanes, if you try some supplement and the disease coincidentally hits a plateau, it is easy to think there is a causal relationship. I admit I wasted some precious time at the beginning hoping for a magic cure, we all do. Your best bet is expert medical care.

[Kimberly]

#1184570

Sandy40 wrote:

I am now considering extreme radical measures to deal with these hormones but I will give conventional medicine a chance to make me better first.

Liz1967 is correct that this is *not* an issue that can be fixed by diet or supplements (or any other so-called “alternative” therapy). Some assume that alternative cures are risk-free, but this is not the case. The biggest issue with these alternative approaches is that they probably won’t control your levels. And if you go extremely hyper or hypo because your treatment isn’t working, both come with significant risks.

Again, I would encourage you to find a doctor to help you get to the bottom of the slurred speech – to determine whether that is due to out of balance thyroid levels or some other underlying cause.

[Sandy40]

#1184571

Thank you for your advise, I have asked multiple times, gone to several doctors and due to my age 40 they don’t want to investigate my slurring and stuttering, I am often told it is the weakness from the facial muscles as a result of leakage of minerals from my muscles into my blood stream.

Lets put it this way, if minerals leak from muscles and bones into the blood stream in this condition, then these symptoms should be called and be referred to as “rigor mortis” or “Graves mortis” as these chemical changes in the muscles and bones are the same a person undergoes with death, only that in Graves you are alive (living dead) when your body undergoes these changes, but no where in any journal or studies I have found anyone mentioning or calling this phenomena for what it is so I believe there is some lack of research in this area as we all know most of the research and funding is given to diabetes which is a primary comorbid.

I am off work due to hyperactivity , clicking tabs and the mouse multiple times, I was given time off work to get better. I was having problem solving issues, I could not verbalize what I wanted to say and when I said things it was not what I intended to say or what I had in mind. I was bullied because of this and the stress from this incident at work brought my condition back. I do try very hard to keep my body and mind healthy , I put a lot of effort into getting better, although there has not been a great change in my condition, I do hope that I can get my graves on remission.

Lets remember World War II during this time not everybody knew much about Graves Disease and lots of people ended up in the mental asylums, people with certain conditions could not get their medicine during war time. So it is a worry to be dependent on a medication such as thyroxine once you have your thyroid removed.

I recently could not get my medication neo-mercazole from any pharmacy as the supply was cut off due to pharma issues apparently but this obviously caused me problems as I could not get the medicine I needed. Now I have bought lots of this medicine in case this happens again, you can also find information on what herbs can treat hyperthyroidism when you can not get the medicine you need, when I was on PTU the same thing happened, no pharmacy had stock of it for a while.

I was even contemplating suicide during this time while I could not get my medication, the surgeon was very kind to me and made me feel better as he said is not me doing all this silly stuff ups that is all caused by my condition and that the condition is doing all this to me.

This condition is terrible, people with Hashimotos and hypothyroidism always say that they are lucky since they never were hyper but some of them I do know do get hyperthyroidism too.

Oh well , I hope all this nightmare of Graves ends soon as I am loosing my patience with it.

Thank you all for your support, I truly appreciate it.

Sandy40

[Kimberly]

#1184572

Sandy40 wrote:

Thank you for your advise, I have asked multiple times, gone to several doctors and due to my age 40 they don’t want to investigate my slurring and stuttering, I am often told it is the weakness from the facial muscles as a result of leakage of minerals from my muscles into my blood stream.

Obviously, I’m a fellow patient, not a doctor, but if it was me, I’d seek a third, fourth, or fifth opinion. There are many different medical conditions (not to mention medication interactions) that can cause slurring, and all of them should be ruled out.

The vast majority of our members here have been very happy with surgery as a treatment option – but you don’t want to assume that surgery will give you relief from an issue that could be coming from other causes!

[emmtee]

#1184573

After four years on anti-thyroid medication, I finally had a thyroidectomy last fall. It was something I’d wanted since the beginning of my Graves’ journey, but it became necessary when I developed a large nodule that caused sensations of choking and was suspicious for cancer. (Fortunately, turned out to be benign).

My surgery was complicated by the fact that my nodule was so large that it extended past my collar bone and was pressing on my trachea. In spite of all that, I had no complications. They used a special breathing tube that had a sensor that would alert the surgeon when she was getting close to the nerves that affect the vocal cords. I was hoarse for a couple of weeks after the surgery due to the breathing tube, but this is normal and temporary. My pain wasn’t really that bad, and I never had any dietary restrictions. I ate a full meal the night of the surgery.

Back when I first started taking anti-thyroid medication (methimazole) I had my dosage changed four times in the first eight months, and I didn’t find the right dose for a few months after that. I’ve now been on the same dose of levothyroxine that I started on back in November. I do need a small adjustment (I’m a little hyper) but overall, I’ve done well on it. I feel pretty much the same now as I did before my surgery.

Everyone is different, but thyroidectomy was very good for me.

[Sandy40]

#1184574

Thank you Kimberley and Emmtee , I can see that many people feel better after a thyroidectomy, I am so afraid of surgery that I hate the thought of having the operation. I have the worry of dying in the procedure due to my enlarged aorta as a result of the myxedema.

I will consult a second and third opinion on this, thank you for your support, I hope that everything goes well with me.

In the following link you can read about other aspects of Graves Disease –

[Link removed]

[Kimberly]

#1184575

@Sandy40 – Links here can only be posted from specific sources; below is an excerpt from our forum guidelines that addresses links:

Posting of Links. Posted links must either come from (a) a well-established, peer-reviewed medical journal (ex: New England Journal of Medicine, The Journal of Clinical Endocrinology and Metabolism, Thyroid, etc.) or (b) an established medical association or governmental entity (American Association of Clinical Endocrinologists, American Thyroid Association, National Institutes of Health, etc.) that provides information guided by “evidence-based medicine”.

You can read more about our guidelines and the rationale behind them here:

http://gdatf.org/forum/topic/43571/

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