[Kimberly]

#1070879

Hello – It’s difficult to give you any direction without knowing where your labs are, but your doctor’s advice does sound odd. Here are a few scenarios:

If you have Graves’ antibodies, but your thyroid levels are normal, this is sometimes referred to as "euthyroid Graves’ disease". Most doctors will take a "wait and see" approach to euthyroid Graves Disease; however, you will want to be on the lookout for symptoms that you are going hyperthyroid (tremors, sweating, insomnia, weight loss, high heart rate, etc.) or that you are having eye complications (bulging, double vision, dry or gritty sensation in eyes, etc.)

If you have Graves’ antibodies, but your thyroid levels are below normal or hypothyroid (high TSH and low T3/T4 on your labs), you will need a prescription to bring your thyroid levels back up to normal. Levo is one of the drugs used to treat hypothyroidism. However, patients DO usually get regular labs early on to make sure they are on the right dose. Also, most patients are instructed to take the pill consistently every day at a certain time, rather than only when they are having symptoms.

If you are hyperthyroid (low TSH and high T3/T4 on your labs) there ARE treatment options, and you DO need to be treated. Untreated hyperthyroidism can lead to a host of complications including loss of bone/muscle mass, heart issues, and thyroid storm, which can potentially be fatal without immediate medical treatment. The choices for getting hyperthyroidism under control are Anti-Thyroid Drugs (which block iodine from being converted into thyroid hormone) and Radioactive Iodine or Thyroidectomy (which removes or destroys the thyroid gland to stop production of thyroid hormone). All 3 options have pros and cons, so patients need do a lot of research and select the option that they are most comfortable with.

Hope this helps!
Kimberly

[bodidiang]

#1019325

I have just been diagnosed with Graves and went to see the Endocronologist and now feel totally distraught. I just posted my visit with him but somehow it didn’t show. Anyways, my Endocronologist says I do not need to see him or have any follow up appointments as there is nothing he can do for Grave’s. He does not monitor blood levels and did not want to see mine at all. Just take my levothyroxine according to how I feel. He suggested a couple times a week maybe half a pill. When my heart is pounding take it less.

Any information would be appreciated. Thanks, Diane

[mamabear]

#1070880

If there was an emoticon for smacking and Endo Insert here

---

> (((____)))

Why did you see the endo in the first place?
Do you have a general/family Dr.?
If so did you go to them with a problem and they were the ones who told you about your thyroid?
Who prescribed the Levo and who was monitoring you before you saw this endo?

Personally I would tell your general dr. if you have one about your visit. Tell them that this person who isn’t someone that treats a person with Graves’ disease. Telling someone to take it and then lower it if you feel funny is someone who should be reported in my eyes.
Even if this dr. doesn’t treat graves’ which some endo’s don’t, they tend to treat diabetes only, he had no right to tell you what he did with your medicine.

I am not sure of the reasons you are on levo, I thought that was a drug for Hypothyroid. Did you have graves and have RAI and are now on Levo for being hypo?

A little more history would help. ” title=”Very Happy” />
As far as that dr., kick em’ to the curb! Find someone that has a heart and willing with treat you with respect and has a good bedside manner.

I am sorry you are confused, sometimes it takes a while to find the right dr. It will happen.

[bodidiang]

#1070881

Thanks for the Reply,

I had a partial thyroidectomy over 10 years ago for a nodule on my thyroid. I have been on Synthroid and then Levothyroxine over the years and it seemed to be regulated pretty good. Then I had a Goiter for 2 1/2 years and problems with Hypothyroid mostly, then it would go Hyperthyroid. I always had regular blood work and adjusted to my medication doses. I thought the Goiter also got alot better. I just had a thyroid ultrasound done and do not know the results yet.

I went to the Neuorologist last year for terrible leg cramps and neoropathy in my feet but never could find out why it was happening. Then I went to see a Neuro Opthalmologist because I lost my eyesight when I was driving one day and I had several episodes of double vision since Christmas. He noticed right away that my right eye was bulged and larger than the left. He did alot of blood work and found that I had these antibodies which he referred to as an autoimmune disease. He had me go see my regular doctor. I did and he told me I had Graves and needed to see an endocrinologist.

My lab results are:

Thyroid Peroxidase antibodies 124
TSI 164
TSH, 3rd Generation 0.04
Angiotensin-1-converting enzme 4

Thanks, Diane

[bodidiang]

#1070882

I had a problem with my first posting earlier today so I would like to try it again.

My regular doctor sent me to the endo. for treatment of my Graves. It was diagnosed through blood work I had done when I saw the Neuro Opthomologist for my double vision problem and the pain I kept getting daily in mostly my left eye.

I went into the endo. office and the first thing he said was why was I there. I told him for Graves disease and he said again yes, you have that but why are you here. So I told him for treatment of it. Then he says, there is no treatment. I start to reach for a copy of my blood work to show him and he says he does not want to see it. He does not monitor levels.
That is when he advised me to just take my Levothyroxine according to how I am feeling. If my heart is pounding don’t take it. Maybe just a couple times a week a 1/2 dose.

I start to ask him about Graves and he tells me how the antibodies are attacking my body. Then he starts to draw a diagram of the antibodies and what they do and looks up at me and shouts "stop looking at me and look at the paper". I was looking at the paper also. Then goes on to ask me what my education is! I tell him I am a high school graduate.

When I ask him what I can do he gets aggravated because he already told me there is nothing he can do for it. If I am having problems with my eyes then see an eye doctor. I tried to tell him I was also having problems with the Neuropathy in my feet and have been having terrible problems with Dizziness and balance. He said it was all related but I don’t know.

He said I notice you have a ugly scar on your neck and why would you allow anyone to operate on your thyroid. I explained this was done many years ago and why. He mentioned that some people have radioactive treatment to destroy the thyroid but he would not recommend it. Then some people take some medication, you could have a steroid shot in your eye but he looks me up and down and says but it will make you fatter. I tell him how concerned I am about my eyesight and he says that yes, I am going to be blind, then says well maybe not. He also said I could have heart failure.
He said I did not need any further treatment and do not have any follow up appointment.

I called my regualr doctor immedicately after I left the appointment as I was distraught over this and he has not returned the call.

Thanks Diane

[hyperm]

#1070883

Diane,

After reading your post I hear warning bells ringing! Something is wrong with regards to your endo. He doesn’t appear to be, firstly, following any protocol and secondly providing you with any clinical advice. I am being serious when I say that you should speak to someone who is either responsible for him or the Exec of the hospital. Why he would ask what your educational background is I don’t know ” title=”Confused” /> I think that you will receive the same advice over and over – ensure you are referred to a new endo. I used to work with an endo surgeon and he would pace through the wards saying "CT scan, CT scan" all the staff were thinking – yes perhaps you need one. It turned out he was very unwell mentally ” title=”Sad” />

This endo’s job is to monitor bloods. I know that over in the UK they don’t really monitor hypothyroidism and my sis who had the op years ago = doesn’t see an endo apart from a 2 year visit. However, you have just been diagnosed and they need to check how you are responding to treatment. Also – nobody wants a scar around their neck – but thats the point , most people have no choice or feel so ill that surgery is the only option. ” title=”Sad” />

I’m sorry to hear you have had a bad experience – we have all had them one way or another, I now have a fab endo
Hope you start to feel better soon.
m xx

[mamabear]

#1070884

So did you have a thyroidectomy and are hypo now?<—Just curious. Either way.. HyperM said it much more gentler than I would have said it But yes I agree, speak to someone regarding this dr. and his actions. Who in the world is he to say any of that to you! I’d have gone off and I mean OFF on him for it. But that is just me and my mean mean ways lol
He might not be an endo that treats graves disease which i understand but he should have just said that instead of giving you a run around.

I would ask to see an Eye Dr. who specializing in Thyroid Eye disease/Graves’ Disease.
Call back your dr. and tell them "i called and left a message and I would like a phone call back regarding this endo I saw!"

[Kimberly]

#1070885

Hello,

In my earlier post, I did not want to judge without knowing the situation, but I would definitely (1) find a new endo ASAP or at least a GP who will be willing to work with you and (2) file a complaint against the endo who refused to look at your blood work and told you there were no treatment options for Graves.

The best judge of your thyroid levels is Free T3 and Free T4, which you did not list. However, high TSI and low TSH are generally indicative of hypERthyroidism. Most labs say that TSI of <125% is "normal", but this is misleading. "Normal" people have a TSI that is barely detectable. The "normal" marker means that you generally don’t start to see symptoms of hypERthyroidism until the TSI level is more than 125%.

The levo is for patients who are HypOthyroid…so it could actually be aggravating your symptoms!

Please fine someone to test your Free T3 and Free T4 and work with you on an appropriate treatment plan if these levels are out of range. Don’t be afraid to throw an absolute fit to make sure you get the medical care that you need. Sadly, sometimes that’s what we have to do.

Best of luck!

[bradybunch6x1]

#1070886

I would be so totally disgusted with a doctor if they thought for one minute that they could treat me that way. That is disgusting. I think this Endo has crossed then line, in all the aspects that he has stated. To make all the assuptions he did was wrong, and to put the fear of God into someone he doesn’t even know is even more disgusting. This Endo knew why you were being referred to him, or he wouldn’t of taken the refferal. This man apperently needs an attitude adjustment, and the best thing to do is find the person that is over him in his practice and have a nice conversation with them. Then go onto another doctor.
As far as the leg thing I have been there and done that, it was when I was hyper and hypo, so who’s to say which way you have gone. The eyes can come also when hypo, as mine did. As far as the goiter though, if it’s worse you do need a Endo, or someone that knows what they are doing. Find out if you have any friends that have seen a good Endo, ask around, check out some web sites for them, there are many out there that don’t feel as this Endo did. HE IS WRONG about treatment. Yes there isn’t a cure, but there is treatment to help with the problems that your having.
I would like to suggest you see an orbital surgeon for your eyes, as they will be able to treat the TED. You could see a different type of doctor, but if your vision is as bad as you say, then I myself would make that my first stop. I have seen an eye specialist and if you have started to loose vision then they would refer you to an orbital surgeon anyway, so don’t waste time get there. It is important that you do that so you can save your vision.
I hope that you do find a doc, and in the mean time check out a few sites while your doing it, and learn about your disease, and even some books, they have a list of some here that would be to your benifit to read.
Valarie

[bodidiang]

#1070887

I will contact another Endo. doctor for his advice and will ask to have the Free T3 and Free T4 checked. I looked at my blood work and did see that T4 total was 9.9. I am Hyper now but in the past I kept getting Hypo. Thanks Valerie, Kimberly, HyperM, and Mamabear for everything. I felt so much better after reading your posts. I started reading some info. on Graves and it has been very helpful. Thanks again, Diane

[jojoransom]

#1070888

Hello I am newly diagnosed with Grave’s and very confused about what to do: surgery is out of the question; and am considering RAI or antithyriod meds. I’m reluctant to do RAI as I don’t want to go Hypo ( I know this is the treatment for Grave’s). My Dr. seems to prefer RAI – I get the feeling it would be more convient for him rather than me. My question is if I choose antithyriod meds – will I be monitored by my Dr. and how often will I have to see him? I really can’t afford too many office visits and how much will the meds be? The reason I would prefer anto thyroid meds is that I am a Personal Trainer and don’t want to gain alot of weight- won’t look good for my clients. The Dr. keeps saying "you won’t gain , just go back to the normal you were before" I see my Dr. on June 8 for my decision. I am currenly taking beta-blockers and feel almost back to normal- although I still don’t have the energy level I used to have; I’m not feeling like I’m losing my mind!!
I flip-flop between what I want to do and am very greatful for this website and any advice I can get. I have 4 beautiful daughters, and my 11 year old is in tears every night about "mommy being sick". Please any advice. Thank you

[Kimberly]

#1070889

jojoransom wrote: My question is if I choose antithyriod meds – will I be monitored by my Dr. and how often will I have to see him? I really can’t afford too many office visits and how much will the meds be? The reason I would prefer anto thyroid meds is that I am a Personal Trainer and don’t want to gain alot of weight- won’t look good for my clients. The Dr. keeps saying "you won’t gain , just go back to the normal you were before"

Hello – I can sympathize, as I lead one meeting a week for Weight Watchers in addition to my "day job." At one point, I was about 8 pounds above my goal weight, which was very frustrating and embarrassing. However, I was honest with people about the extra weight and the fact that I was busting my tail to get it off.

I had to cut my daily POINTS target waaaaaay back to reach my goal weight again. (Which happened a couple of weeks ago – Woo Hoo!) Then I added 2 POINTS a day back to my food plan, since I wanted to maintain, not continue losing…and I packed on about 1.4 pounds the following week. D’OH! Soooooo, what I am discovering is that at least for me, there IS no "normal you were before". It’s a NEW "normal". Is it *possible* to lose or maintain? Yes, absolutely…but in my case, I find that it takes a whole lot more work than it did before.

As for your question on the endo visits, I’m sure that varies by state and by insurance carrier. As a benchmark, my visits are about $160 per visit, which discounted to about $90 on my insurance plan. Early on, I was getting labs and going to the endo every month (to check my thyroid levels, as well as my liver function and white blood cell count), plus one extra visit at a 2-week interval because my levels were falling FAST and I felt miserable. Then for about a year, I went every 3 months. My levels were stable at my last visit, so they said I could stretch it to 4 months before my next appointment.

Hope this helps!

[Ski]

#1070890

for jojoransom: Your treatment IS your choice ~ you need to look carefully at your options, the way you feel, and your insurance coverage, and figure out what you think is best overall.

It’s possible to limit office visits with an open lab order ~ you can get your blood tested anytime, then check in with your doctor by e-mail or phone after the results come in, to adjust med levels.

Just as a quick aside ~ it is NOT a given that you will gain a lot of weight after RAI. The weight issue is extremely complicated, and with the proper attention to detail, you can keep from gaining a lot.

In addition to that, please be careful exercising while you’re hyperthyroid. You can really do harm, and you can make it more difficult to keep weight off afterward, because you can lose muscle mass that you will need to help you get back to "normal" when things stabilize.

[Ski]

#1070891

to bodidiang: Just echoing all your other advice ~ RUN from that doctor as quickly as possible, and find one that knows how to help you. Yours is a horrifying story.

[jojoransom]

#1070892

Thanks to Kimberly and Ski for your advice- it helps just to know that there are people "out there"! As far as exercise- I haven’t been able to do any of that for about 2-3 months now I have been too exhausted to even get through a routine. This has made me lose most of my strength, muscle mass and gained body fat- although the scales show I’ve gain about 3 pounds. I used to deadlift at least 145(I weigh 118), now I can barely do 75. That in itself is frustrating, because "before" I could train and still have energy left to clean house, run errands, run after kids. My house and household used to be organized and running fairly smoothly- but now I’m lucky to get the laundry started and can barely get through making dinner. The house is a mess and I feel very unmotivated and irritable, not to mention angry about this whole thing!! With summer break coming up- I have to decided to try my luck with meds- buying time before RAI. I realize I will have a "new normal"- it kind of scares me to think what that might be. Thank you again for the advice and a great site to read about real people experience and not just something out of a book. Jojo

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