You need to get treatment as soon as possible, GD will only get worse and you will end up in ER.
So do whatever it takes:
The Phobia, you need some form of counselling to get over that, but the GD will be aggravating your anxiety, so you will just need to come up with a rationale of some type that will allow you to swallow the meds, whatever your mantra is, you need to take the medication.
Document your story, times, dates, who you spoke to, what was said, etc.
Six months is far too long to wait for treatment if you have a clear diagnosis of GD, talk to your doctor, can he refer you to another Endo to get in sooner?
Contact the local hospital in person and in writing, stating your situation and that you are seeking appropriate medical treatment.
Write to your local member in politics regarding you situation and the quality of health care, use email or registered mail so you have proof of delivery.
In all your communications remain firm but civil and advise that you will continue to document all responses or lack therein and go higher until your medical treatment has been adressed.
If you have to, go to the local media, although by the time you have done the other things above I think you will already get some action.

In saying this, you have to be prepared to take the prescribed medication.

Naisly
Carito71

The problem is, my GP doesn't know anything about the medication (administrating/dosing etc) nor is he able to do any more blood tests so it was his suggestion I see an endo. Thing is, if I am to get over my phobia with the pills, then I must get the answers I need - because as of now, I feel 10 times worse than I did 2 weeks ago and believe it to be imperative I see where my levels are in order to get the correct treatment.

So I have a choice, I can either wait for an endo or have my GP guess, this is why I was asking about beta-blockers.

I don't know what else to do

~Naisly

Hello Naisly,

I think I'm starting to understand. You have a GP and a psychiatrist. Who is the internal medical doctor though? I thought you were meaning that he/she was the Endo and you just didn't know the correct term of his/her specialty.

I agree with you, in order to determine the dose the Dr will need to run labs, etc. You GP, for what I understand, diagnosed you with GD but can't treat you b/c he/she doesn't know what labs to run, what dose to give you, right? But … I believe you said in your other post that he can give you the medication by guessing what your #s are.

In your other post you said that:

Naisly
They said it was graves, and I had T4 and THS test done, they would not do T3. I also had an uptake scan done. The labs will not do any more tests unless a endo asks. My GP doesn't know enough about graves or the medication. He said he can start me on the medication but cannot follow up with testing, diet, lifestyle changes …

Who ran the T4 and TSH for you? Was it your GP. Those are mainly the tests that your Dr needs to keep running to see where you are if you take Methimazole or any of the other treatments (minimum tests b/c with Methimazole you will also need AST and ALT, WBC - lab test that any GP should be able to run and understand … basic MD stuff). Couldn't you get in touch with the Dr who ran the T4 and TSH?

I believe it is very irresponsible to keep you waiting so long. First they tell you that you have GD and that without treatment that you can die and then they tell you that you have to wait 6 months. It is very upsetting. You might have to go Harpy's route … call the local hospital, call local media, etc.

I agree with Harpy when he says “you have to be prepared to take the prescribed medication.” I can only imagine how the waiting and confusion of the whole waiting game, plus the symptoms, are making things a lot worst for you but start getting your mind set ready for taking the treatment for when you finally get it. I'm glad you are seen a psychiatrist, who can hopefully help you get to where you need to get in regards to your phobia.

Please do keep us posted. No one should have to go through so much to get treatment for GD.

Caro

Caro, I am not sure if you read my recent post. Pretty much the same as yours. However, from what I understand from what Naisly wrote, she does have an internal medicine doctor who first diagnosed her. But after that, it seems to be only the GP and the psychiatrist.
Naisly, is the internal medicine doc the endocrinologist? All endocrinologists ARE internal medicine docs, who take a year or two of an endocrinology fellowship. They have already taken internal medicine boards,then they take an endocrinology test.
I worked with a Canadian internal medicine doc who has just finished his residency, and was at my hospital to focus on endocrinology. His experience was the same as I described.

I am writing all this so we understand the terminology you are using when you refer to the internal medicine doc you apparently saw at least once and who diagnosed you/ Is this correct?

At any rate, I feel that you need treatment. It would take a lot of emotional effort, probably with no success at all, to contact the press, in my opinion.

As Carito said, when you DO take an ATD, you need to have the tests she mentioned, especially initially when you begin the drug, and for a couple of months after that.

Re phobia. Maybe you can work with your psychiatrist to transfer your phobia to something else. I am not joking, I worked with a nurse who had a severe phobia of blood. She worked with a doctor to transfer her fear to chocolate covered cake donuts, which she hates. Worked for her.
Do keep writing
Shirley

snelsen
Caro, I am not sure if you read my recent post. Pretty much the same as yours. However, from what I understand from what Naisly wrote, she does have an internal medicine doctor who first diagnosed her. But after that, it seems to be only the GP and the psychiatrist.

Hello Shirley. Not really. I was passing by really fast but I'll go back and read you … but I'm like you, is the internal medicine Dr she saw an Endo? You too are in Canada. That is wonderful. You understand the system there more than we do and might be able to give Naisly some advice.

snelsen
Re phobia. Maybe you can work with your psychiatrist to transfer your phobia to something else. I am not joking, I worked with a nurse who had a severe phobia of blood. She worked with a doctor to transfer her fear to chocolate covered cake donuts, which she hates. Worked for her.

Very interesting about the transfer information. I'm sure it worked out great. Can you imagine not being able to work with blood being a nurse? I have never heard of a transfer. I'm so glad there is such a thing.

Naisly, it might be worth asking the psychiatrist about this.

Hi Naisly and welcome

Your fears are justified. If you are angry with your doctors who seem a bit on the not-so-compassionate side, I understand that also. I think in med school they teach compassion but then tell them to throw it out the window at the first sign of fear LOL. I love the doctors/endos, etc. but yes it can be either intimidating or condescending. This board is a great source of support. No one is a physician but we have or had this awful disease so as “ginny pigs” we have been treated and can tell you first hand the results, affects, etc. It is a chess game, move forward, move backwards, move sideways…etc. until they find that sweet spot.

So with that being said, please please please seek medical help ASAP. thyroid storm can be fatal and you would not want that to happen. You think you feel bad now….

Keep seeking treaters of the mind also. The mind and body are connected without a doubt. See if you can get some sort of liquid anxiety medication if that will help. Even if it is something you can mix in water or juice for easier consumption. But yes, please seek help and keep doing your research for a good endo.

I wish you the best recovery and you are in my prayers…

Darcy

Hiya,

Having read what you've written, as someone else has suggested I would recommend seing a Counsellor. As i am a Counsellor, therapy can be brilliant to get over phobias. What I suggest for the mean time is when thinking about or taking tablets, to tell yourself your going to be ok. Use positive affirmations as much as you can. This will help in the short term but for long term, seeing a Counsellor is the best option. Although therapy doesn't work for everyone, i guess there's no harm in trying.

Hope this helps

Kay

Thank you all for your replies.

I took all the advice and got an appointment with an endo Aug. 24th. My mind is made up and I am going to take the pills - now that is done, I guess the next step is physicaly taking the pills.

I am and have been seeing a Physiatrist, he told me he can't help me unless I take pills for the stress. I won't take any mind altering drugs ever, and that is a bit deeper than the phobia. Nor will I take any pain medication. I do however take tylenol#1 but that is the one and only pill I'll take - no advil, no asprin, no vitamins etc. I'm so confused and lost because there are more issues aside from the phobia. I have however writen a graves story for my dr and was thinking about sharing it here but I'm unsure if I should since it is sort of long.

I do have a question though - How come some people take 20+ pills with graves?

Be well,

~Naisly

Hello - Do you have the opportunity to seek a second opinion from a psychiatrist? If you have been diagnosed with a true anxiety or panic disorder, medications can certainly make a difference, but since the primary source of your stress is the medication itself, that doesn't seem to be very helpful!

I have never heard of a newly diagnosed Graves' patient taking 20 pills a day, especially for a patient on methimazole, which is the more commonly prescribed anti-thyroid drug. (PTU, the other anti-thyroid drug, has to be taken more frequently and in larger doses, but even then, I don't think you would get anywhere near 20 pills, even on the maximum dose).

For patients who have other autoimmune conditions, such as MS, lupus and rheumatoid arthritis, the medication regimen can certainly be more severe.

I'm sure that others would be interested in reading your story, if you'd like to post it here!

Hello Naisly,

I'm so glad you have an appointment coming up. It will be here before you know it. I'm also very glad that you have arrived at the determination to take the pills. One step at a time and you'll get there. You know what the problem is and you are trying to correct it. It is not easy fixing something unless you know the problem and are determined to do something about it

I think a lot of the Drs will prescribe something to ease the nerves and anxiety when the patient is experiencing hyperthyroid symptoms because the symptoms can be very overwhelming. Maybe you should try at least one of the stress pills to see how you do? Who knows, maybe you will do well with it and it will help you take the others for the thyroid. All for the sake of feeling well and getting healthy. Just remember, you are in control, you can take one just to try it out.

I would love to read your story. I love comparing my story to others so if you would like to post it here, you can count on me to read it.

I agree with Kimberly about why some people might take more than one or two pills. Some members might have multiple problems affecting them. I take several, one for the thyroid - Methimazole, one for the heart - Metoprolol. I used to have to take 3 for the thyroid (3 methimazole pills a day) and 6 Propranalol a day but since I got better the # has dropped. Besides that I also take Iron pills b/c I have a history of anemia. I like to take folic acid b/c being a woman it is necessary to avoid a bad pregnancy in case I'm to get pregnant later on and also for the anemia b/c it helps make more cells. To that add my vitamins. You see how it adds up. Some people might have other autoimmune diseases that might require steroids and other medications.

I hope all goes well at your appt. Please keep us posted. I'll be looking for your post with your story.

Smiles,
Caro

Hi,

As for the number of pills needed, it can really vary. On my first bout of GD several years ago, I was started on a fairly high dose of Methimazole (I don't recall exactly) which was tapered down pretty quickly. I only had to take it once per day.

This time I'm on PTU. I noticed that it takes more pills to equal that of Methimazole and I have to take it more often. My initial dose (and a pretty big one) was four 50mg 3 times per day. I was also on 5 pills of the Atenolol. So, my grand total was 17 pills plus my calcium and vitamin supplement but I use the fruity gummy ones just like the kids The pills are all very small which makes them easier to take.

I'm off the Atenolol and the PTU has been reduced to 4 in the AM and 4 at bedtime. I'm hoping we can drop it further at the end of this month. I've been feeling so much better - not running any marathons or anything but significantly better.

I prefer to avoid medications/pills in general. Note that I use the gummy vitamins. I suffer my seasonal allergies without them and the cramps have to put me in bed before I take anything for pain. However, I know I have to right now so that I can be a healthy mom for my children.

I'm thinking good thoughts for you on this difficult journey.

Laurel