[JandJ]

#1019926

Hi – I am new to this board like so many (and new to Graves), and I really wish I would have found this site when I was first told I had Graves. I had a lot of symptoms that seemed more like hypo (and with a sister, father, grandmother, and aunt who are hypo I thought I found the answer to why I felt like crap all the time). BUT, my doctor found out that I have Graves. Here is where I have a lot of questions:
Where I live it is hard to find an endo who works "willingly" with thyroid issues – they are mainly focused on diabetics. It is not a good sign when your doctor refers you an endo and says "well, he is probably the only that will even take you – most of them around here don’t know what to do with thyroid patients…" I have met with my endo a few times and although I feel I am getting good care, I have so many questions and I feel I am being "poo-pooed" most of the time. So how do you find a good endo?
I am seeing there are many medications that many others are on, my endo went straight for PTU… which seems to be working until recently. Sometimes I wonder if the symptoms are in my head, but I feel like I am starting to have more bad days than good days again – can that happen?
I guess I am just really glad to see there is such a great community out there to maybe help me – all of us – through this. It is nothing like I can explain, but at least now I don’t feel so alone.
With the symptoms – did anyone have an increase in acne and a slower rate of hair growth? Strange I know, but these two things seem to be coming back again, along with the hot flashes and being SOOOOO tired.
Thank you for any advice and or help you might be able to share with me… being "newer" to all of this really has me stressed.

[IrishPoet1920]

#1075076

I as well had an increase in acne…. I never even had a pimple my entire life, until I was diagnosed. Then it was like puberty all over again… I am always breaking out, an many of them quite painful under the skin pimples. The only plus side, I have so many freckles that they blend right in among them. Thank God for that, or I would never leave the house.
My hair growth didn’t decrease…. it increased. However, my hair went from being hair model potential to dry an brittle. I am shedding hair left an right. I guess it is a good thing I have enough hair to supply an army of bald men, because you certainly can’t tell. However, when I shower there is a whole animal in the shower drain when I am done.
One thing I did notice with me, is my skin is sensitive, an dry. I always have a rash in addition to acne on my face, colorless but still there.
I also developed an inflammation on my cornea as a result of my already chronic dry eye becoming even drier do to graves disease. So yeah this sucks!
My eyes are progressively getting worse, and I am unable to focus my eyes when trying to read. Not a good thing when you are a college student, and spend most of your time with your nose stuck in a book.

[Ski]

#1075077

Hi JandJ,

I am sorry to hear about your local endocrinologists ~ you have a few options. You can investigate the various offices and doctors, and conduct interviews of the doctors, to see if one "feels right" for you. Given your primary care physician’s comment, I would guess that you may not have much success with that, but it might be worth a try. I don’t know if it really comes down to the doctors not being "willing" to work with a thyroid patient, but the issues are certainly different, their practice is most likely full of diabetic patients, and they are usually INCREDIBLY busy. If they don’t have much experience with thyroid issues, they may not be much help to you.

Your primary physician OR an internal med doctor who is willing to learn along with you could be helpful, and could take primary control over your treatment. Whatever relationship you can build with a doctor you trust will be golden.

The initial period of time on PTU is likely to have some ups and downs for you. It’s critical that you have access to a lab for purposes of checking your levels when you feel poorly. A standing order for TSH/T4 blood tests would be extremely helpful for now. Don’t take it for granted though ~ the tests are not extremely costly, but insurance companies are touchy about that. It’s a balancing act. If your doctor consents to a standing order, ask the doctor what they feel would be a "reasonable" amount of time to wait between tests. It may be more often than you think, while you’re dealing with adjusting your PTU doses.

The slower hair growth may well be caused by thyroid hormone levels ~ when we are either imbalanced (hyper or hypo) OR our levels are changing (even if they are going from an imbalance to balance, or moving within the normal range), our body interprets this as an emergency situation and removes support from the "non-essential" parts of the body in order to preserve our "essential" body functions. The body considers hair and nails as the most "non-essential" items, and so those things are usually the first to suffer and the last to return. Go easy on your hair for now, it will come back, promise. ” title=”Very Happy” />

We’re so glad you found us! This board helped me through MANY tough times. Let us know how it’s going!

[JandJ]

#1075078

Thank you so much for your replies. It does help to know that I am not alone – and it does help to know that the symptoms I am having may or may not be the same as everyone else’s, but at least I am feeling better that they are "not in my head."

I was talking to my husband last night and I felt like such a complainer, but he wanted to know how I was feeling. I am going to call my insurance company and see if they will pay for a second opinion… and maybe some more tests. I tried to interview a few, but it was so hard to get into to see them – they are VERY busy people and it is like a catch 22. I want to meet with them, but hate to take their time. You are right though, I have to be an advocate for my own health.

Thanks again – at least I now feel like I have some support. ” title=”Very Happy” />

[Bobbi]

#1075079

You mentioned that you feel you are getting good care from your endo, but you have doubts. I think those doubts may have been planted by the comments of your GP. You entered into your relationship with your endo already anticipating bad results. And that might not necessarily be reasonable. Your GP might have very good medical reasons for the comments. But another possibility is that your GP wanted to be an endo, but could not pass the exams to be accepted into the program. Or thinks endos are stuck up… There could be lots of reasons for the comment, not just the medical expertise.

So, the hard part is going to be you figuring out if your endo is indeed a good one. So, I’ll make some comments.

Most endocrinologists do not treat many Graves patients simply because there are not many Graves patients in any given general population. So, it does not mean an endo isn’t qualified to treat Graves. There are lots more diabetics in the population. Most endos are going to have lots more diabetics in there case load than thyroid patients.

Most endos do indeed pooh pooh our symptoms in one way or another. I have a terrific endo, and even I have heard the words "It’s not your thyroid." Or I got a pep talk when I was feeling like dirty dish water. The main thing we have to work to achieve is a relationship with our endos that has open hearing on both ends (the doctor side and our side). And it takes time and cooperation. Does your endo listen to your comments and consider them? (And, conversely, do you listen to the endo and consider the comments?) Yes, we have symptoms. The problem is that they are, unfortunately, often "subjective" rather than "objective." Subjective symptoms are "I feel so tired." Or, "I feel like I’m brain dead." These symptoms are real, but are not something the endo can "measure" or accurately observe. Objective symptoms are "my heart rate is 120 while I’m lying in bed." We patients expect our endos to treat our subjective symptoms with the same degree of attention and sympathy with which they treat our objective symptoms (blood test results, heart rate, etc.). They very often do not. They are trained as "scientists" rather than "counselors," if you will. If they see that our blood levels of hormone are in the right general spot, that is their main concern.

The other problem is that sometimes we absolutely insist that a symptom is caused by thyroid issues, and sometimes they can be caused by something else entirely. This is where the "listening to one another" comes in. For example, I was told I was fine, but I felt truly awful while on PTU. No objective symptoms — completely subjective ones. I was fatigued; I could not keep a single thought in my head for longer than about 10 seconds; or, I could not reason through something without difficulty. It felt like my brain had turned to molasses. I ultimately decided that it was a reaction to the drug, and went ahead and had RAI. People here told me that I was wrong, wrong, wrong — that it was not the drug, but I never had the problem once I stopped the drug. So, while there are LOTS of people who can take PTU or methimazole just fine, I was not one of them. There can be adverse reactions to one or more of the drugs you are on. Or — again an illustration from my case — I just felt "off" for months and months, with bouts of indigestion. Come to find out, I had developed gall bladder disease as a result of losing too much weight too fast. As soon as I had my gall bladder out, I was absolutely amazed at how much better I felt. So, just because you have Graves does not mean that every symptom is actually being caused by the thyroid issues. We patients need to keep an open mind about subjective symptoms and develop a relationship with the doctor that allows the doctor to explore other possibilities with us. If the doctor says "It’s not your thyroid," it may well not be your thyroid. But we often have to ask the follow-up question: "OK, then, what IS it???"

I just thought I would throw these additional comments in for you to think about. I hope you are feeling much better, soon.
Bobbi — Online Facilitator

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