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Best of wishes on your trip. I haven’t traveled since I got sick in June and I’m afraid of doing so right now that I’m still brand new to all this. I hope all goes well for you. Have fun!!
Caro
Welcome to the forum.
I was just diagnosed in June so I’m still learning a lot about GD. Why we get it is everyones question. Wish we knew. My Endo told me that once you have one autoimmune disease you are more likely of developing another. He told me this b/c I also have Celiac. Stress, I know can cause all kinds of damage so maybe that is one of the #1 causes. I have had my share of “heavy” stress in the past. Something that I have changed, specifically to help with Celiac D, not knowing that later on I would be diagnosed also with GD. I’ve read that healthy life changes can help us feel better.
I wish you the very best with your RAI. I’m currently on Methimazole so I have no experiences to share about either RAI or TT. Hopefully more of the members join in and provide some answers for you. Please do keep us posted.
Caro
Hello Kimberly,
Thank you for your reply.
I’m not experiencing any of the common symptoms but I have been feeling tired lately. I guess that could be considered a symptom but besides that I’m not experiencing any of the “common symptoms”.
My sleep is being affected by my dreams. Before I got sick, I used to be able to sleep so good without nightmares, etc. Now, I wake up feeling sad from the dreams that I’ve been having. I wonder if it is the medication or a symptom.
I’m still feeling hot a lot of the time so a little bit of cold intolerance would be welcome.
My pulse is within 60-78 w/ the beta blocker and so when it comes to that I feel fine. I’m happy it is finally that low b/c when all this started my HR was going between 124-114. It was awful.
My labs are tomorrow. Just like you recommended before, I’m getting them done before my appt next week
I’m so looking forward to finding out how I’m doing.Did you ever experience hypo symptoms? Or where you able to achieve a level that was comfortable w/o having your #s fall low?
Thank you for sharing. Knowing that we are all different I would like to know what symptoms others have experienced. No one else is sharing though. Being that this is a GD (HyperT) forum, this might be the wrong place to ask.
Caro
You are getting great advice from Shirley.
The lower BP could be dehydration.
I showed up to the ER with a similar BP but my dyastolic (lower #) was in the 30s. I was given fluids and that pumped it up a little bit but still not in the normal range for dyastolic (60-80). At the ER they did a PRO BNP test (blood test) and it came back at 266 (normal < 178). This comes up high when the heart is affected, especially in patients with Congestive Heart Failure (CHF). I don't have CHF but the hyper thyroid was starting to affect my heart and that is why it was elevated. My BP, since I started treatment has normalized. Your systolic (top #) is within normal range (90-120) so that is good. I got a machine at the drug store and I have been monitoring my BP. I recommend you get one also. Shirley is right though. You need to see a Dr soon for the hyper thyroid and for the problems it is causing to your body. Good monitoring of your #s is a plus with GD. I would think that your GP would want to monitor on everything else if he/she is not monitoring you on thyroid labs. There is no way out of pills and medication unfortunately. The positive thing is that there is treatment, you just have to start it. Once you start your treatment and take the Rx as prescribed you will feel better
Please keep us posted.
Caro
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.
I’m so glad you are taking the beta blockers. I know it is hard for you but I’m glad you are finding the power to take them. 100 bpm for heart rate is in the high end of normal and can be elevated for you especially if your normal pulse was in the 50s before you had the heart rate problems. Normal range is 60-100 but 100 is already uncomfortable for me b/c I also used to run a low heart rate before my heart rate issues. Was the 100 bpm at rest? What was it before you started the beta blockers? It could be that the beta blocker is working but you might need a different one or a little bit higher dose. As I mentioned earlier, I had to have mine changed b/c the Propranolol was not working for me.
Did they do an EKG for your heart at the walk in clinic? With 100 bpm and “flutters”, I would have asked for an EKG. Did they feel your pulse/listen to your heart? And if so, did they tell you if it was regular or irregular? An irregular heart beat can be anything and needs to be checked out with an EKG to make sure that it is not Atrial Fibrillation (A Fib) or PVCs that are running close together (dangerous rhythms).
Is your dyastolic BP always low (48)?
He is probably worried that you are not on any treatment for GD and that is why he might have asked you why you were not on PTU. You will need more than a TSH though but if the TSH is almost not there then that might be enough to get you started on Methimazole or PTU … not sure. You do have more than a TSH result from the time that they ran your labs (I think you said T4?). Maybe the walk in clinic, with what they know about your vital signs and having asked you about the PTU, can help you see your Endo sooner????
I sure hope you can start the treatment you need so that your hear rate can start regulating and you can start feeling better. The thing with GD is that when it affects the heart it is even more dangerous. You don’t want to develop an irregular heart rhythm on top of everything. My GP told me that my heart could have easily turned A Fib if we hadn’t caught it when they did and if I didn’t have a young heart. Mine was 124 bpm though when I arrived at the ER. I’m glad yours was not more than 100. Keep your activity to a minimum. Do not exercise. Rest when you can.
Glad you went to the walk in clinic. Maybe they can help you with seeing your Endo sooner.
Caro
Naisly wrote:Carito71The 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
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, I forgot that in your other post you mentioned that you are on beta blocker (http://www.gdatf.org/forum/topic/42735/). I’m glad you are taking them.
Then you stated your heart rate was 90+ with the beta blocker. How is your heart rate now? Did it start going down with the beta blocker? 60-100 bpm at rest is normal range. I, personally, was not comfortable when my heart was in the 90s but my Dr. changed my beta blocker from Propranolol to Metoprolol. If your heart rate still is elevated with the beta blocker that you are taking, you might want to see if your Dr can change it to a different beta blocker or increase your dose. The thing is though, that you have to take it as recommended to start seeing a change. Hope you feel better soon.
Harpy wrote:In “my opinion” GD is a “wake up call” that requires one to pay more attention to their health and if one does not change their ways they will have ongoing issues irrespective of what treatment path is taken.True … I just wish I knew what that was for me. I had a “wake up call” when I was diagnosed with Celiac and I changed so so many things then. I even got a different career so that I could learn more about my body and so that I could reduce my stress levels. I started and continue eating gluten free and yeast free. I could have exercised more I guess (to build up muscle, I’m thin as it is). And also gotten more sleep. Now I can’t exercise but as soon as the Dr gives me the go ahead I think I’ll start swimming. I have also started sleeping more. But in all honestly, I already live a healthy life … other than the sleeping b/c sometimes I know I didn’t get the sleep I needed. I hope the small changes help me …. I don’t know what all else I could do to change things.
Hello hhchong,
It looks like you are in the normal ranges. Congratulations. How are you feeling though?
From what I have read, the TSH might stay low for a while, while your pituitary adjusts.
I’m so glad your #s are looking good. I hope you are feeling a lot better now.
I’ve not had a TT, I’m on Methimazole, TT is my other treatment option.Caro
Hello.
I’m so glad you are on your way to recovery. I believe a post was left not long ago where it was said that about a wk after the RAI one could and probably would develop hyper symptoms due to the thyroid cells dying and dumping all the thyroid hormone out into the blood. I haven’t had RAI so I don’t have much to add. Hope you start feeling better soon.
Caro
