[Naisly]

in reply to: Labs are a no-no here but… #1174854

Thanks for the replies.

Well I’ll try to give a quick run down on what has been happening.

When I saw my endo Aug.24th (first and only time) he told me what my dose will be 30mg first 4 weeks, then start 15mg there after, and depending on labs at 6 weeks, have my GP adjust my dose. I tried to tell him my GP doesn’t know anything about dosing, and the only reason I had the referral to see him (the endo) was because my GP agreed he didn’t know enough, so then what, my endo said of course my GP knows. I asked him if I could call his office or what I should do ‘if’ my GP doesn’t know, he only laughed and said your GP knows and I don’t want to see you for 6 months. He also made me promise I would not change the dosing on my own, I reluctantly agreed.

So, Sept.12th I started the 30mg. I began to feel better, shakes gone, heart felt stronger, most aches gone etc. But then Sept.23 my heart started to do some funky things – not at all like when I was severely hyper. It was happening every 5-10+ beats per minute, sometimes not stop for 5 minutes straight, all day, everyday. From the second I opened my eyes to the second I fell asleep.

It feels like my heart is off beat and jumps making blood rush to my head, causing me to take a deep breath because I feel it in my chest, almost as if I got the wind knocked out of me for that ‘beat’. And I walk around trying very hard to ignore it, but its hard to when I feel so dizzy. Something just wasn’t right.

Oct.5 I went in to see my GP and told him about the heart thing, he said not to worry, and ‘sit’ when I felt dizzy. He said he would order a 24hr heart monitor if it would make me feel better, I told him that it might be a good idea. I asked him about my labs from Oct.3, he said I was still hyper because my TSH was still low and to continue following the dosing the endo recommended. (Obviously I was hypo at this time just from my lab work). And no, my GP still thinks that you dose according to TSH levels.

So at this point, knowing I was hypo I had no choice to follow what the edno and my GP said. But all the while my heart got worse, I began so swell up all over, I look like I’m 6months pregnant, my stomach is rock hard, my hands are swollen, my skin feels tight, my goiter is bigger and is bothering me, my eyes lids are swollen actually, most days I don’t have upper eye lids. I’m starting to walk around like a zombie again. I suppose the worst is my heart and feeling dizzy all day.

As you can see I had labs done again Oct.25th and this is where I’m at. I will say that finally after 3+ weeks (Oct.29th) I am to go in and get that heart monitor the GP ordered back on Oct.5th.

Just a tad bit more info – Not once since June have I had my blood pressure checked by any of these dr’s. And this is why I had such a hard time starting the medication to begin with, because I couldn’t find a dr willing (knowing) to do proper dosing, and look where I’m at now

I’m just so very alone.

~Naisly

[Naisly]

in reply to: 2nd Dose RAI #1174801

I counted from June 1 – November 1 so lets assume she had the RAI June 1, that would be only 5months. But I would guess that her RAI was ‘sometime’ in June so technically that would be 4+ months since her last RAI.

[Naisly]

in reply to: 2nd Dose RAI #1174798

Hi there and welcome.

I’m sorry to hear about the hard time your having and have been having, my thoughts are with you.

I had to read through your post a few times and am still a tad confused. First I think the care you have been getting isn’t as good as it could have been. Second, I myself haven’t had RAI, my goal is to aim for remission with medication, but from what I have been told, RAI is a long process. It can take up to six months for your thyroid to be destroyed and sometimes longer. During those months most people feel up/down/up/down etc.

So what I don’t get is why they want to schedule another RAI so soon after without waiting for the first to take it’s course and why the surgeon just didn’t try to balance out your levels in the first place before any surgery? I mean, 5 months between RAI’s is just absurd. I would honestly try to see another endo for a second opinion. And from what I remember, there’s a certain time frame before one is able to have another RAI treatment. Hopefully someone else here will chime in.

Just keep in mind that what ever treatment anyone chooses, it is a balancing act, and for that you need to be an advocate for your own health as well as having a knowledgeable GP/endo.

Are you still taking Tapazole? Or Synthroid? Did you get another ultrasound? Are your dr’s checking your TSH, free T4’s and free T3’s regularly?

~Naisly

[Naisly]

in reply to: UPPER EYELID SURGERY TODAY #1174184

My thoughts have been with you all day. I hope all went well for you and a speedy recovery!

All my best,

~Naisly

[Naisly]

in reply to: My Story – Graves and Life #1173965

Thank you all for the wonderful replies!

It does help to hear what others have to say, since I feel very alone with this.

Update:
I don’t think my mom is moving in with us. We had her here for her birthday Aug. 23 and she brought with her two bottles of liquor. So my partner suggested we rent the room out, but I don’t think I can deal with that, having a stranger in my house while I feel so sick. Then again we need the money if we are to hang onto this house. I’m so upset about this, I don’t know what to do.

I went to see an endo Aug. 24. I’m not sure I like him much. He didn’t ask me what my symptoms are or didn’t take my pulse/bp. He gave me a prescription for 30mg of Methethimazole. I am to take that twice a day for 4 weeks then 15mg once a day for 3 months. I didn’t like that, because don’t we need labs, and check our symptoms before we dose? He was also very fast, the apt was only about 10min and he told me to come back in 6months. However he did say to get more labs done which I did. Results are as follows:

August 24 2012
TSH 0.06 (0.38-5.5)
T4 Free 58.2 (10.5-20.0)
T3 Free 21.7 (3.5-6.5)
Thyroperoxidase Ab 2670 (<35)

May 2012
THS 0.06 (0.38-5.5)
T4 Free 32.3 (10.5-20.0)

I did not start the pills yet (still an 240mg Propranolol), as I am still trying to understand the labs. Because it looks like Hashimoto’s as well as Graves. And I read too much ATD can suppress T4 and T3 permanently if you have Hashimotos, is that true? Does anyone know how to dose for that? Or can point me to information regarding it? My GP doesn’t seem to know. And I won’t take the pills until I have some answers.

I suppose this is why I have been so tired and achy and my symptoms have been so wonky?

Hope all is well,

~Naisly

[Naisly]

in reply to: Help With Phobia #1173075

I’ve read through all you posts again – and again. So I feel I should clarify a bit. Yes I have a phobia, but I can get through it by understanding treatment for me and not just a number.

So in saying this I’l try to explain what goes through my head – Doctors can not possibly know every disease there is (there are over 20,000 diseases) unless they are personally connected to it. The human brain can only retain a certain amount of information, unless they are a rare individual. Here in Canada, most of pharmaceuticals was removed from med school.

That being said – When I first was diagnosed, the dr gave me two prescriptions, beta-blocker and ADT 30mg. He told me to take both and I’ll feel a lot better, then sent me home. He did not explain to me anything about the drug, how to take it, when to take it etc.

Phobia: Of course I did not take either, and began to research the ADT (I know what beta-blockers are). I didn’t even research Graves, just the medication. I went back to the dr. he asked if I had taken the pills, I said no, and began to ask a lot of questions, which he didn’t have any answers.

Shortly after I went into a walk in clinic because my dr was away. I told the on-call dr I had graves, he asked if I was taking ATD’s, I said no, and told him I had a phobia and was working through it. He said that was silly, and brought up graves treatment on his computer (much like those large medical volumes dr’s used to keep lined up on their shelves in their office). He took a quick scan, turned his monitor towards me and pointed, “See, here we go, 30mg of ADT”.

I asked if that was too much, and shouldn’t we first know what my levels are. He pointed at the screen again and said it shows right here that if you have Graves this is the recommended treatment. I asked about dosing, and follow up labs, again he pointed (I think he was getting a tad frustrated) and said all we need is your TSH levels and we dose accordingly.

I walked out of his office even more paranoid and in shock. How on earth can I have this treated properly if the dr’s are using out of date standards? I realize I can take a prescription from my dr, but what about initial dose, and follow up dosing? GP’s can’t order (here) T4 or T3 labs let alone TSI, only TSH. It’s wonder there’s such a small percent of patients who go into remission here.

I hope all is well, and keep up the good work everyone.

~Naisly

[Naisly]

in reply to: Help With Phobia #1173071

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

[Naisly]

in reply to: I need help in Canada #1173267

Thank you. I will be sure to send you a message.

~Naisly

[Naisly]

in reply to: How Long For Beta-Blockers #1173361

I went to the walk in clinc and the on call doctor said my bp was 98/48 pulse 100. He was a quack anyways asking why I wasn’t on PTU I said I was waiting for blood work and he said, “all they need it your THS” then he sent me home. My normal for pulse has always been around 50ish. I only went in to the clinic because I had these add heart flutters – I know most people get them, but it lasted for 5mins and wouldn’t stop.

I don’t think the beta-blockers are working and I’m up to 240mg daily.

~Naisly

[Naisly]

in reply to: Help With Phobia #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

[Naisly]

in reply to: How Long For Beta-Blockers #1173356

Thank you again for helping.

One thing about Canadian medicare is – it may be free but it’s lousy. it’s so bad people often die in the ER hallways waiting for treatment, because there are not enough doctors or RNs. That being said, it is very hard to see a specialist and or GP. This is why it took me 4years to get a GP.

It’s not that my doctor ‘won’t’ order labs, its just that the ‘lab’ won’t do them without an endo ordering them, or I have to pay for the lab work. Even the first lab work I had done, they wouldn’t do them until my doctor phoned them, and the lab told him they would do it that one time only.

I took all of your advice and had my partner phone the endo’s office. He told them my symptoms and that I needed to get in asp, the receptionist told him my referral would go into triage this weekend and since it is a long weekend here, I won’t hear back until later next week.

I’ll post something later today because I don’t understand my symptoms, I have to get ready for a phyc appt.

~Naisly

[Naisly]

in reply to: How Long For Beta-Blockers #1173352

Thanks for the response…

I wish I could get another endo, but this is the only one close enough for me.

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, so personaly, if I want to do this right and know where my levels are, I believe it to be important to see the endo first.

I’ve been on the beta-blockers since May….

[Naisly]

in reply to: Help With Phobia #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

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