[Naisly July 21, 2012 at 12:03 pm Post count: 143]

#1059219

Hello,

I’ve just been diagnosed with Graves about two months ago. Currently taking 240mg beta-blockers because my BP is so low 84/60 pulse 100+. Which for whatever reason does not seem to be working. My pulse is still at 90+. My GP thinks I’ve had this for many years, which probably would have been diagnosed at that time if I went to a doctor in the first place.

This is where the problem is. I have a major phobia with taking any medications (similar to being afraid of heights, spiders etc), which Ive had for years. But each time I went to a doctor before, they would just laugh and at me and hand me a prescription (antibiotics, creams, pain pills etc) which I threw out each time. So I stopped going.

So now my GP is saying if I don’t do something I will die. Either the drink or the anti-thyroid pill. The internal medical doctor I see wants me to take the drink, and the newly appointed psychiatrist wants me to take anxiety pills so I CAN take the drink or pills.

Ok, so I’m leaning towards the pills but the phobia is in the way. I don’t want the drink because they want to kill the entire thyroid. Their reasoning is – Chances are that doing the partial drink won’t work, so might as well take care of it now. Also, I am who I am, I’ve always had a fast metabolism, always been very thin, sort of hyperactive and I have an odd way in thinking.

So from what I have read, removing the thyroid changes all of this. Well quite frankly I like who I am. Also, No major decision making, haha, I would consider this a major decision between the two choices.

Sorry for the rant, but I really don’t know what to do and need help.

~Naisly

[KimberlyOnline Facilitator July 21, 2012 at 8:09 pm Post count: 4294]

#1173056

Hello and welcome to our board!

If this is truly a deep-seated phobia that you are talking about, I would strongly suggest visiting with a counselor…we are all fellow patients on this board, not doctors.

If you are just concerned about the side effects of the three treatment options, then you are pretty much just like every other patient, including myself, who has faced a Graves’ diagnosis.

All three treatment options have risks and benefits, and it’s important as patients that we educate ourselves and make an informed choice. You can find some good info to get you started in the “Treatment Options” thread in the announcements section of this forum.

Graves’ is a condition that is likely to get worse over time if not treated – and can lead to complications such as bone/muscle wasting, heart issues, and a potentially fatal condition called thyroid storm. You are much more likely to have a positive outcome by picking any one of the three options, rather than taking no action at all.

Please check back and let us know how you are doing!

[snelsen July 21, 2012 at 8:32 pm Post count: 1909]

#1173057

Wow. Thanks for joining us. It does sound like you have some good health care providers in your life, presenting information and some options. But that does not make it any easier for you. However, phobias are serious things, and sometimes, since yours of of pills, it can interfere with your well being. Much easier to avoid heights, try to stay away from spiders.
Have you have any really good therapy about phobias, and/or yours?

I am speaking as someone who now has “iatrogenic” hyperthyroidism. Iatrogenic means physician caused, or caused by the health care system. Which means, that for quite a while, my endo kept me at too high a dose of Synthroid because I liked the way I felt. Full of energy, always on the go, never stopping…this was a long time ago. Said my suppressed TSH was normal for me.

The result? An increased risk for atrial fibrillation, and a definite accelerated degree of osteoporosis, beginning at an early age, my early 40’s. My heart rate, except for when I was initially very hyperthyroid before my surgery, has
always been in the 60-80 range. When I was initially hyper, it was 130-140.

So now I am stuck with my suppressed TSH, which does not budge not matter how low we decrease my Synthroid. We went so low in order to resolve this, and reduce my risk for the things I mentioned, that I because super hyPOthyroid with symptoms, but not by labs.

You cannot learn a lot from my story, except to realize that this is serious business, and you can really hurt yourself by doing nothing. The phobia makes it much hard for you. I hope someone else on the forum can share their experience with phobia, if anyone has them.
Wanted to welcome you before I hit the sack! I am tired.
Shirley

[Naisly July 22, 2012 at 7:31 am Post count: 143]

#1173058

Thank you for the reply.

I understand that no one on this board are doctors. I do however need a support system outside the medical profession. I also understand I do need to make a decision soon and my medical team is not helping.

I’ve had this phobia for, hrm, 20+ years I suppose. And its not just ‘pills’, but anything ingested. Creams, smells, vitamins. An example: I can get an anxiety attack from medicated shampoo.

Just last week I began to see psychiatrist, but hes insisting I take an anxiety pill so I fear that is a dead end.

My partner supports me – sort of. Well he understands graves and wants me to make a descion on treatment. But my daily needs he does not. Other than that, I don’t have any other support.

I actually only have the choice of two treatment options. Pills or radiation. They won’t do surgery since it is affecting the entire thyroid. (Besides, I wouldn’t do surgery) My doctor said it is much safer to do the radiation than to surgically remove the entire thyroid.

I don’t even know what the uptake scan showed, other than, something about 49% and it was a lot faster to do than usual. I asked my doctor and he said it shows I have graves, thats it. Well I wanted to know what 49% percent meant.

I can’t get another doctor, it took 4years to get this one. We here in Canada, don’t have much choices, at least not in small towns. We get what we get, if we are so lucky. And a specialist, good luck. I’ve heard for some people it can take up to a year to see one. I don’t even know what an endo is and it was never offered to me, so I’m suspecting there isn’t one close.

Anyways, I feel like a schmuck. All of you are having such a difficult time with this – Years of trouble, and I’m worried about treatment. I should feel lucky, but I don’t and I am truly sorry.

I’m seeing my doctor tomorrow and I’ll ask him a bunch more questions.

~Naisly

[snelsen July 22, 2012 at 8:34 am Post count: 1909]

#1173059

Hi, Naisly,
You are not a schmuck! You have a situation with Graves’ that we all hate. Plus, your very legitimate, diagnosed phobia, which is another medical condition, make a very difficult situation even more difficult for you.

I agree with your on comment about the psychiatrist. How demoralizing to be dismissed like that, and be told to “fix it” with the very thing that is fearful for you.

Many of us have had so many disappointments and bad experiences with endos who don’t seem to care, who are dismissive, or controlling. There have been others from Canada on this forum, you may be able to find some of them if you put Canada in the search engine. Possible that you might live in the same place as someone on the board, and you could contact them with a PM, see if they are happy with their endo. An endo is an endocrinologist, they are generally the docs who treat hyperthyroidism. Some are more interested in this than others. Many specialize in diabetes. But they know about Graves, for it is an endocrine problem.

There is no reason at all for you to feel lucky! Most of us are NOT happy that we ended up with Graves’.
Many of us have family members who don’t understand,and who don’t “get it”at all. It helps a tiny bit to realize that before we had Graves’, most of us have NEVER heard of it, and had no information about it, and the implications of having it.
It helps to make a list of questions for your doctor. Know them before you go in, as much as you can. Also ask him/her if there are any options for you to explore actual help with your phobia diagnosis, and/or I am wondering if you would profit from a support group of people with phobias.
Shirley

If you have read the board very much, you probably have learned that all three treatments are chosen for totally different reasons. Unfortunately, continuing to live with Graves’ and do nothing is not a good option, and can be a very dangerous one. You are certainly not the first person to consider that! It is a long road back to feeling like yourself again. and even harder, when you like the way you feel now!

[Alyk July 22, 2012 at 6:35 pm Post count: 13]

#1173060

While I don’t have a phobia to medications, I do really worry about what they will do to my body, so I can sort of relate. I think, in your situation, it would be a really good idea to seek therapy through a psychologist or counselor in order to work on the phobia and see if you can get past it (without the need for additional medication!) I’m sorry it is such a struggle for you.

[Carito71 July 23, 2012 at 8:22 pm Post count: 333]

#1173061

Hello Naisly,

Welcome to our forum. I have read your story and I can only imagine what it most be like to be afraid of the very things that can make you feel better. I don’t have any phobias. I’m concerned at times about how the medication will affect my body at times and do minimize medication intake as long as it is not going to hurt me not taking it. For example, if I have a headache I might try using an ice pack instead of taking Tylenol because I worry about it hurting my liver but if the headache was strong enough that made me uncomfortable, I would take it. As for the Methimazole for the thyroid, I didn’t give it a second thought because I know that without it, I would be very very sick and probably even die since it affects my heart.

I don’t really know what could be done to help you with the phobia part other than seeing a psychologist/psychiatrist but you are sick with GD right now and right now you need treatment for it. It is unfortunate that to help you with the phobia you have to take medication. I know that another way to help a person with a phobia is to expose them to the very thing that gives them the phobia. That might be the reason why the Dr. is telling you to take the pill to help you with the phobia.

The thyroid situation is something that has to be treated though. I wonder if they could give you something like Versed before doing the RAI or right after it (RAI = drink to radiate your thyroid). Versed will help you relax, it can be given through an IV (through a vein, not ingested), and it will help you not remember the procedure. Just a thought. Maybe you can talk it over with your Dr.

By the way, and Endo is short for Endocrinologist. You see, the thyroid is an Endocrine organ and so an endocrine specialist would be an Endocrinologist. In the US we see a specialist and the one we see for the thyroid is the Endocrinologist. Once things are balanced we can see a general Dr. who is also aware of what labs to run and aware of the Rx to take …. like synthroid.

I’m so sorry you are having to go through all this. It sure doesn’t make it easier on you having the phobia you describe. Please keep us posted. It is very important that you get help as soon as possible because the thyroid problem cannot go untreated.

Wish you feel better soon,
Caro

[Carito71 August 6, 2012 at 1:16 pm Post count: 333]

#1173062

Naisly wrote:

So now my GP is saying if I don’t do something I will die. Either the drink or the anti-thyroid pill. The internal medical doctor I see wants me to take the drink, and the newly appointed psychiatrist wants me to take anxiety pills so I CAN take the drink or pills.

…

~Naisly

Naisly,

In your new post (http://www.gdatf.org/forum/topic/42767/) you stated that you will have to wait 6 months for an appointment. Where they not wanting to do the above right away? I don’t understand why they want you to wait 6 months when they are telling you you have GD and and placing out a plan in front of you. They are telling you that if you don’t do something you will die but now they want you to wait 6 months. I’m confused. I think that the sooner you get the treatment the better because the hyper thyroid is, per what you have shared with us, affecting your heart. I hope you can see a Dr. soon.

Caro

[Naisly August 6, 2012 at 2:51 pm Post count: 143]

#1173063

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

[snelsen August 6, 2012 at 3:41 pm Post count: 1909]

#1173064

Naisly, do you have a copy of the labs and scan? It is my understanding (though I am not sure, so I am confident someone else will chime in here) that the radiologists, the nuclear med docs, are the ones who determine the dose for the RAI. As I read all your posts again, it does seem that from your view, and also because it is advisable to get treatment (beta blockers as you are taking, plus ATD anti thyroid drugs, and I get the impression you are not taking those???, then move on to RAI. Or, as Kimberly said, and we all feel, that when you call as many shots as you are able regarding treatment plan, the more confident you feel that you are doing something very good for yourself.

As I understand from your posts, the doctors involved in your care are the psychiatrist and your GP. Is there a third? Or did your GP diagnose your Graves’. Are you seeing an internist, too?
IF you are not on ATD’s, and you have Graves’ and are hyperthyroid, you should be on an ATD as well as a beta blocker.
One suggestion I have, is that the GP call an internist or an endo, fax your labs and scan to them, and ask them to tell your GP a beginning dose. Then, when you have follow up labs, he can send them to one of the docs, and they can advise you about the ATD dose.
Regarding the beta blockers, I believe the GP is very capable of managing that drug. YOur job, and it is important, is to keep a record of your pulse and
BP to report to him.
Does any of this make sense to you?

Regarding your partner, it is very hard for anyone else to begin to understand Graves’, especially when we are new, and don’t understand it ourselves!
I am sure that you simply want to get back to your normal self (minus the phobias) and the way to do that is to move on with this stuff.

Carito has suggestions about meds for your phobia, and it seems your psychiatrist should be able to help you with this. I suggest you request your psychiatrist, GP, internist if you have one, talk to each other, and/or the endo be consulted by phone, have one of these docs get an earlier appointment Maybe your GP? This possible?
Shirley

[Harpy August 6, 2012 at 3:43 pm Post count: 184]

#1173065

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.

[Carito71 August 6, 2012 at 7:31 pm Post count: 333]

#1173066

Naisly wrote:

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 wrote:

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

[snelsen August 6, 2012 at 8:13 pm Post count: 1909]

#1173067

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

[Carito71 August 6, 2012 at 8:25 pm Post count: 333]

#1173068

snelsen wrote:

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 wrote:

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.

[Darcy43 August 9, 2012 at 8:11 am Post count: 125]

#1173069

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

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