[Ski]

#1064764

Hi Jules,

Sorry to hear you’re having such trouble ~ I’m glad you have an appointment tomorrow, that’s great. It sounds as if your endo has already put you on anti-thyroid drugs (ATDs, we call them), but you don’t say exactly what the prescription is, so I’m not sure. Sometimes they will prescribe beta blockers (typically heart meds, but they can help with our symptoms ~ don’t correct the problem, but they address the heart rate and tremors), so I wouldn’t be surprised if that’s what you were given, or if you were given those in addition to the ATDs.

In any event, once they’ve seen you and evaluated your condition, it’s not surprising that they would want to wait for those diagnostic test results before seeing you again. There’s not much they can do without new information, so the likelihood is that your endo will simply reiterate these points in defense of their staff.

Hyperthyroidism definitely produces all of these symptoms, and in addition makes us CRAZY with worry, so I understand where you’re coming from, and with your family’s history of heart problems, I can empathize with your desire to be seen ASAP. Hopefully the doctor already had some sense of your current condition, felt that they had provided medication to get your levels to begin dropping, and will reassure you at tomorrow’s appointment. Throat/voice issues can be caused by the swelling of an overactive thyroid (underactive also makes it swell, just so you know), and the heart rate is a direct result of hyperthyroidism, as are the tremors in your hands. *Typically* these things do not escalate into something that will cause a heart attack, though there is one very rare condition, called a "thyroid storm" that can occur when hyperthyroidism has gone completely untreated. The doctor probably does not consider you to be at risk for this, but do ask the doctor tomorrow what you should look for and what you should be extremely concerned about, so that you’ll know when it’s appropriate to push for an appointment or go to an ER. If you truly find yourself in thyroid storm, that is an ER event. I hesitate to mention it because it is so rare and you are so very worried, but I felt you should know it exists. You shouldn’t be mistakenly pacified that "nothing can happen," but you are currently under treatment and your doctor would have given you specific instructions if they felt you were at a particularly high risk of this rare event.

The thing you need to understand is that nothing resolves quickly with Graves’ Disease. Things will get progressively better as you go through the treatment process, but it’s not something that gets better immediately upon taking the first pill. It took time for us to get sick, and it takes time for us to heal. Months is the scale we work with, not days, not weeks. Try to find a way to calm yourself ~ I know it seems nearly impossible. Your heart rate will likely continue to be high, and the things you are experiencing are *chemical*, so don’t feel as if you are some kind of a "failure" if you are unable to relax completely, but do anything you can to find some peace, and you will feel better for it.

[Jules]

#1018431

Hello I am a newbie. I had our PA at the Dr’s office tell me I have hypo then hyper thyroid confused as to what I had – I did not wait for a referral I scheduled an appointment with an Endo for the next day.

When I get in she runs a few physical tests on me then looks at my TSH T4 T3 and states I have graves. Tells me to take these pills AT and she will send a request to the primary for a few test.

MRi for the Eye issues and an Ultra sound of thyroid. I called into the Endo about 7 days ultra sound because my throat hurts and my voicie is changing. My hands are shaking and my resting pulse is any where between 110 and 130. The Nurse said that i could not talk to the Dr and NO i coud not make another appointment until I had the ultrasound and the MRI. My Primary is having a hard time getting the approval for the MRI. I had a CT San unrelated a few weeks before this and had hives real bad.

I called after the Ultrasound and I still could not get an appointment for the pounding chest and sore throat. I called Last thursday in tears because of the totall feeling of crap. They told me to go and have a blood test. I drove to the lab and they were closed, so I stopped by the Primary’s office and the only one there again in the PA she gave me som Bata Blockers (which are not helping). I finally have an appointment with the endo tomorrow. What if anything should I tell her about the issues I have had trying to get an appointment. I had a brother die of a heartattack at my age, and I am concerned about my chest pains and pulse.

[Jules]

#1064765

Thanks for listening to my rant yesterday. I went to the evil endo today. She was point blank on me stating the "I only deal with the thyroid number and I do not treat all of the symptoms tacacardia sore throat insominia etc… You need to got to someone who does. " I am now researching a new endo for southern California. Oh she also said the horseness and dizzy ess is not from graves. Yea right! I am having eye issues and I get the mri tomorrow.after reading the web all day today I realize that doctors do not explain graves when the diganose it. You are out to fend for yourself. Thanks for this web site now I know I am not alone and that I am not crazy. My primary called me tonight and we discussed things in detail. He knows me and to him I am not just a thyroid number.

[snelsen]

#1064766

OK. you are right, you need a new endo. Of COURSE these symptoms should be heard by your end. Where do you live, if you would like me to, I will as my endo in SEattle is there is a clone of him where you are. Let me know.
I am not sure why you need an MRI. I see no justification for it which is why your insurance company may be balking. Who suggested it and why? Hope the facilitators jump in on this one.
If you are having eye symptoms (which seems like this is not an issue for you) you might need an orbital CT to confirm tED., plus a good eye doc familiar with tED and a neuro-eye doc.
Look forward to hearing from you,
Shirley

[Bobbi]

#1064767

The numbers are important, but so are the symptoms. You need a doctor who pays attention to both. (As a sidebar, though, you should not expect an endo to rush to change things just because you might be having "vague" symptoms, if those numbers look rock solid. I mention that only in passing, for future thought because it doesn’t sound like you are having "vague" symptoms.) The thyroid levels are a range — in some cases (like T4) a rather wide range. The way the labs came up with the "normal" numbers in the first place was by using statistics . Doing a test on a whole lot of people, and then analyzing the pattern into which the results fell, and correlating them with symptoms, the labs came up with a range of normal for their type of test. (Different labs can use different analytical techniques which will change the numbers, slightly.) Since I was diagnosed, however, doctors (and labs) have decided that their range was probably wrong (too wide) for TSH. They have now lowered the number at which they consider a patient hypothyroid, because they decided that more of the population was probably hypothyroid than originally believed. Anyway, because the numbers are a range, it is possible for some of us to have symptoms of hyperthyroid, if we are at the hyper end of the normal range, or have symptoms of hypothyroid, if we are at the hypo end of the range. We might not BE normal at the ends of the range. And I think our endos need to pay attention if this is the situation.

There is a normal tendency, among all of us — myself included — to blame as much as possible of our health issues on our thyroid levels. Once you get thoroughly sick with out-of-whack thyroid levels, it’s hard to put it aside and accept that something else might be going on. Besides, if it IS thyroid, it is so easy to fix. Or, so we think. And we go to the endo, who does a blood test, and then says, "It’s not your thyroid." End of conversation. I have a terrific endo, and even she said that once to me. She was going by the numbers. But I did not leave it there. I said, "OK. If it’s not my thyroid, what IS it?" When an endo says it’s not your thyroid, their thought processes have stopped. You’ve come to them with a diagnosis that they’ve proven wrong. End of problem for them. You need to pass the ball back. From the patient’s point of view there IS a problem. It would be wonderful if it really was thyroid-related, but if it is not, we need the doctor to continue to reason through things to find out what IS going on. Endos are internists who have specialized in the endocrine system. And AS internists they have received the education necessary to work through other physical conditions.

So, it is important for our endos to listen to what we are saying and continue to work with us, if only to suggest that the problem might be better resolved by another type of doctor. If your endo is not capable of listening to you when you feel you have a problem, you might want to look for a new one.

[Jules]

#1064768

Thanks Bobbi I am looking for a new one. I have been reading all night mostlikely for the sore throat and horsness it started after starting methimazole so I did more reading and I am now wondering if I am having a reaction to it.

[genuinruby]

#1064769

Jules,
I am no longer a rookie as I have been dealing with graves treatments for nearly 3 years and with undiagnosed graves for many years. I have hoarseness with hyper levels. It goes away when I reach eurothyroid level. Everytime I start taking methimazole, I get a sore throat.(no fever) It also goes away in a week or so. My doctors cautioned that if a sore throat and a fever develope then I needed to have a labtest to check my white blood cells. Here is a quote from wikipedia that explains:

"It is important to monitor any symptoms of fever or sore throat while taking methimazole; this could indicate the development of agranulocytosis, an uncommon but severe side effect resulting from a drop in the white blood cell count (to be specific, neutropenia, a deficiency of neutrophils)." This is very rare.

Welcome to our shared journey, I know it is overwhelming for you at this beginning part of the trip. Hang in there.

Ruby in Reno

[MyTAnswers1]

#1064770

I have Graves too and just getting diagnosed was a struggle. Hang in there. Ask questions. You are not alone. Joyce

[Bobbi]

#1064771

Hoarseness can occur because any enlargement of the thyroid gland can put pressure on the nerve that operates the vocal cords. That nerve runs through the thyroid.

You didn’t mention methimazole before. But if you are on methimazole, and have developed a seriously sore throat you need to get the doctor’s office to pay attention and check your blood. Sometimes the antithyroid drugs lower our white cell count and make it difficult to fight off infection. This happens very, very rarely, but it is one of those symptoms that merits a "call your doctor right away" warning on the drug information sheets we get when we fill a prescription.

Good luck, and feel better soon.

[thompson91]

#1064772

Hi! Welcome in a strange sort of way ” title=”Smile” /> I just had my first Endo appt today. He prescribed the Methalzone. He stressed to me that if I develop a sore throat that is not strep to contact him immediately and its a reaction to the meds. He sounded like if that happens you can no longer take it. yes, finding a new Endo sounds like the thing to do. So far my first appt went better than expected and he was very thorough. Good luck!

[Jules]

#1064773

Thank you all for your support. I am very happy there is a place for us to vent ask questions and just plan belong. Anyone have a Thyroid specialist in Southern california and or experiance with the Shirly Eye center? I live noth of San Diego County that is lacking for specialist in the thyroid. They are diabetic Dr’s. Yest they might know Diabeties but have not clue about Hyperthyroid and Graves. It is furstration I am use to being incharge of my medicals. I know when I don’t feel good and usually know what I need. I have had major ear infections my whole life. I am in the "I know i can beat this GD" phase right now. I refuse to be treated as a number.

Regarding my experiance with the endo. I was diganosed almost 4 weeks ago by the primary. Then I scheduled an appoint with the group Endo. She was all about the numbers and made a comment why did my primary order these indept h thryorid panel. I told her it was because my tsh came in at .006. the throid panel that came back as t4 was 17.1 uptake was 41 and free t was 7.0. All WBC and RBC and liver was fine. alwas have been.

When I called the endo because of the pounding chest they told me to get a blood test. I did and it came back with RBC came back as high, WBC are dropping (still with in the normal range) as well as my neutrophils absolute is dropping in only 2 weeks of the meds. She increased my med’s to double the dose so from 20 mg to 40 mg. She did see signs of TED even with out me mentioning the dry gritty eyes and having dizzy and headachs when I drive. I had the MRI Friday. When I was in this week seeing then endo she stated that my thyroid was not large enough to cause my sore throat or hoarseness yes it is swollen but not large enough to do that. Even though i was having the racing puse and was the main reason that I saw her this week they never even took my pulse or blood pressure. Amazing how Endos think that they can see through my skin and know I am fine even though I am not.

My concern is that since i am usually in tune with my body and the sore throat in the moring on waking up is about a 4 on the pain scale and raises during a day up to a 9 that I am having an alergic reaction. I do run a low grade fever daily abot 99 to 100.6. I have a very low tollerance to Medications. I am alergic to alot of things.

I asked the endo point blank is there another med I can take because of the concern about the reaction i am seeing. She stated no. She said We need to do an RAI on you. I told her I am not doing RAI until Ihave done my investigation to see if this is the way to go for me. She was upset and wrote on my file REFUSES RAI.

My current Thyroid is. t4 2.42 tsh <.006 t stim immunoglobin 512 TPO 236 free serum 8.2.

Does anyone know if Shirly Eye Center habve endos on staff with the thyroid clinic an I make an appointment directy with them or do I have to find an endo to refer.

Thanks for your time.

[snelsen]

#1064774

Hi Jules, I have been washing sheets and linens all day, hanging them on the clothesline because they smell so good!
Just caught your latest post.
1. It is Shiley Eye Clinic, not sure if you had the wroong name, or it was a repeated typo. I suggest you make an appointment with the neuro-ophthamologist. It does sound like you have TED (thyroid eye disease) and the doc can confirm that. The other docs in that clinic)
Now! I think the neuro eye doc would be a great person to refer you to an endocinologist. AND, WHEN YOU CALL FOR THE appt, leave a message that you are looking for an endocrinologist to manage your Graves’. As for a couple names. I am sure the telephone answerer will have to check with the neuro eye doc, or you can simply leave a general question that you would like the names of endocrinologist the recommend.

Whether you need a referral or not, it depends on:
-your insurance
-their practice
These specialties are so so busy, that they do try to screen their patients to ones who really need the help.
-are you having CHEST PAIN? or a fast pulse (representing your pounding chest.) Count your pulse rate. You probably got the metoprol for the fast pulse rate. IT is possible that the dose needs to increased.(I am just chatting, here…)

I think you endo is evil! Like your description. certainly not the person you want a long term relationship with as you struggle with Graves’.
Your primary did the right thing, fine for her to order the labs. It made sense to order the metabolic panel and the CBC but they were ordered to look for any screwy labs that might explain your sore throat. As you know, it is important to moniter platelets and white blood cells when on MMI (methiamazole.) Same with Propylthiouracil (PTU) There is an additional serious side effect of PTU, and you should have liver labs if you are on that drug. Now, I may sound like a doctor, but I simply saying what you should have been told when put on these drugs, and what most people on this site know, and that is the side effects that you should report right away.
ANOTHER REASON to have an established relationship with and endo that is working.

I did quite a ramble, here, so think I will sign off and get the sheets OFF the line!
be ready to be frustrated about waiting for everything. Do whatever you can to get these appts c neuro opth and a different endo.
Do you already know that there are not many endos in your area? Can you ask your primary for another name?
Neither one is needed for Graves’.
QUESTIONS:
1. What meds ARE you taking? I don’t think you have named them.
2. Will your primary refer you to the neuro-op doc at the Shiley eye clinic? Probably would be helpful to you.
3. How are you feeling now? Throat hurt more, less? Temp higher, do you feel worse? Then to the primary i would go.
4. BUT

[snelsen]

#1064775

My last post, guess I did not finish a sentence beginning with "the other docs" when talking about Shiley eye clinic.
I intended to say that the other docs are surgeons that sometimes are needed for TED, but not too often. The neuro-eye doc will you refer you to them if needed. If you have TED, sometimes there is a lot of swelling in the eye orbit, and that can put pressure on the optic nerve, and that is what that doc moniters.

I SURE HOPE YOU CAN FIND A COUPLE MORE NAMES OF ENDOS! AND IT WILL GO FASTER IF YOUR PRIMARY WILL REFER YOU TO ONE BEFORE YOU CALL FOR AN APPT FOR REASONS I stated in my last email

[Kimberly]

#1064776

Jules wrote:When I was in this week seeing then endo she stated that my thyroid was not large enough to cause my sore throat or hoarseness yes it is swollen but not large enough to do that.

Jules – I posted this on another thread as well, but you definitely want to get the WBC (White Blood Cell Count) test done if you are having a severe sore throat…especially if you have a fever. This is a simple test to have done; if your endo isn’t willing to help you, then your General Practitioner can get you a lab slip to have this test done. This side effect is rare, but I would definitely suggest erring on the side of caution and getting the test done.

Docs from the Shiley Eye clinic have done presentations on TED at past GDF Patient Conferences. They do not have endos on staff to my knowledge, but as Shirley said, they could likely provide you with a good referral.

[Lauri]

#1064777

I just want to add my experience with just starting out on MMI…I also has a sore throat for a couple of days off and on when I first started taking it. i had no fever, though I DID feel like crap and thought for sure I was sick…called the Endo office and they ran Stat blood work, it came back normal…I did this twice…since my diagnosis on June 11, I have had blood taken every 10-14 days for something. I have also had my MMI lowered twice in that time because my body had reacted so quickly. I also do not store iodine (per the uptake scan). Yesterday I questioned why I have not had anti-body testing done or Thyroglobulin levels done…I was told it is because there is no suspect of cancer, and these tests are only done for a diagnosis or suspicion of cancer.

[Author]

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