[Naisly August 20, 2012 at 11:46 am Post count: 143]

#1059300

My story –
First off I have to say – This is a long read, I suppose most of it is a rant. So if you wish to ‘click back’ there will be no hard feelings. I also have to note that I have always been healthy (aside from – Irritable bowel syndrome
Tonsils removed), I’ve been nimble, no pains, no allergies – I do have to say that I have a strong resistance to pain and illness. If I did have a headache, no complaining, stomachache, no complaining. No one would know when I was not feeling well.

It’s so hard to write as of late as I find my mind goes blank after a few written words. So I do apologize beforehand if something doesn’t make sense. I just find that I can’t put my thoughts together so I’m hoping that writing this will help.

Who I am –
My life has been extremely stressful and challenging – Kidnapping, sexual, physical, and mental abuse. Living with drug and alcohol abuse, so stress is nothing new, stress to me is ‘normal’. I’m not complaining or feeling sorry for myself. So in saying this, “For any problems yesterday make me the person I am today”. I have never showed emotion and always logical, very analytical, thrive on planning, can’t stand structure, and a perfectionist. My partner would refer me to ‘Spock’. I’m quiet and hate to bother anyone so I tend to keep to myself, I suppose this is why I don’t have a support system in place. I’m stubborn and factual, a tad eccentric, and tend to keep my guard up – watching, day dreaming and learning. I’m hyper-sensitive to the world around me and accept my faults for they are who I am.

When I was 16ish I went to see my doctor alone as I had been doing for a few years and he told me I was a hypochondriac. I never went back to him or any other Dr. But a few times in my mid 20s I went back to another doctor for the same complaints – headaches, stomachaches and I could not gain weight (105-112lbs since age 16) which made me feel very self consensus. This doctor told me I just had a fast metabolism and not to worry, because when I get older it will slow down. I went back to a different doctor in my mid 30s, same thing. So here I am in my mid 40s and three children later. I took great measures not to be a ‘hypochondriac’. There was no way I was going to be like my mother, she was/is one to the tenth degree. I hate the fact I’m complaining now, It’s just not ‘me’.

Pains and misery –
Two years ago I met my current doctor for the first time (and the last until recently) only because I wanted my son to get a check up. The doctor seemed quite friendly so I threw out some symptoms of my own – My headaches were changing, very sharp pain in my temple area much like a brain freeze which lasted only a few seconds, then they began on the side of my head and these pains came more frequently. I was waking up feeling like I had a very bad hangover (I don’t drink at all). I was very very tired all the time, so tired I had a hard time holding up my head it felt as if my head was about to roll off my shoulders. My eyes felt so heavy and when you looked at them you would think I was crying because they were so red (I don’t have any allergies). I also had shortness of breath and bad muscle cramps in my feet. My stomach pain was odd as well almost like bad hunger pains which made me feel nauseous and tender to touch. Almost like I’ve had too much sugar. I’m sorry I can’t really explain it. But I thought it might have been diabetes because it runs in our family. (I will have to remember to get that checked next time I’m there)

This newest doctor told me I should have some lab work done. I didn’t get the lab work done and never went back until recently and that was two years ago.

Then it began –
I tried to quit smoking this past January, everything was going fine, I was down to about 8 cigarettes a day (my usual is 20). In March I began shaking and my pulse was fast. At first I thought it was caused by nicotine withdrawal then it got worse, to the point I couldn’t sign my name, of course I relapsed and started to smoke more. Around that time I got a flu which was odd in itself because I don’t get sick, at least not for the past 7+ years.I had a very high fever and achy all over, that’s it. About 30 days later I had the same flu. My periods where very heavy, so heavy a few times I awoke soaked, they were also back to back. It wasn’t until May I finally broke down and went in because I was so dizzy, it was like someone smacked me over the head.

I had labs done and a few days later I got my results of my THS and T4 which showed I had GD, the doctor also told me I was his first graves patient. At that time my thyroid wasn’t swollen, he set me up for a uptake which I had June 15th. And I totally messed that up at least I think so. I was an hour late eating and hour early for the scan (One would have thought they would have told me I was early) and the results were 49%. My doctor talked about RAI and putting me on medication. Took my weight (95lbs) told me to take beta-blockers and come back in a week with my decision. I didn’t start the blockers, he asked me why, I told him I had a phobia. he set me up with a psychiatrist. Took my weight again, and it was 100lbs. Then set me up with an internist. By this time he didn’t know any of my other symptoms only my BP, dizziness, and periods (he said the heavy periods are from GD). He asked if I was having trouble with the diarrhea, I said no, I’m constipated. He said that was normal.

About a week after my scan I saw my doctor again, this time with a ton of questions, because what do you think I did? I went home and researched graves. And the only reason why, is because the diarrhea question made me curious. He asked if I started the blockers, I told him I did – that my partner persuaded me into it and sat up all night with me. I told him my thyroid was now swollen and I was feeling really bad. I then began to tell him my symptoms – shortness of breath, stress he said, stomachache, stress he said. And the list goes on. I questioned him about the constipation, and the heavy periods, he said that was normal, everyone is different. I told him I learned a lot on line and I am following a great forum, he said not to, that it will give me wrong information and that the most important thing is to get my stress under control. Ok, I agree with this, but really? I questioned him about the blood tests I read on the forum, he didn’t see any point to them and said he couldn’t order them anyways. I questioned him about the ATDs, he didn’t have an answer and suggested I see an endo.

I saw the internist, he asked the same thing about the diarrhea, I told him I was constipated, he to said that was normal. The conversation with him was basically the same as the doctors, but this guy really pushed the RAI. He said that I wouldn’t go into remission anyways so there’s no sense and I’ll have to do the RAI eventually so might as well get it over with and it’s much safer than the ATDs. Hyper is very difficult to treat so we would rather you go hypo. He raised my dose of blockers.

I saw the internist again, this time he had a student with him. They both told me I need to do the RAI. He again raised my dose of blockers.

I have felt a lot worse since the uptake scan – My neck is now swollen and harder to swallow. I knees crack with each step. Most days I can barely hold up my weight let alone walk up the stairs. I feel like my knees are going to give out on me. I tripped down the stairs just over two weeks ago, grabbed the railing so I didn’t fall. I could barely walk for almost a week (I had to anyways). It was like I tore all my upper leg muscles. My hands ache, not bad, but enough to be annoying. I feel like I can’t breath (the doctor listened to my chest and said it was clear). I still wake up feeling like I have a hangover most days.

But this isn’t the worst of it for me, it’s my mind. Aside from being so stressed, which is nothing new, I feel as if I’m going crazy. I can’t remember certain things, I say the opposite of what I mean. Example: “I’m so hot, I mean cold.” I can’t seem to finish sentences. I have no motivation what so ever. I’m exhausted, not just my body but my mind as well. Some days I just want to give up because I am so tired and can’t seem to go on. I don’t have insomnia, if given the chance I can sleep. When I scan for things with my eyes, I don’t know what they are right away – I have to think, its like it is not registering.

I feel if I don’t follow a regimental treatment – healthy eating, no stress, no smoking, that I will die because I refuse to do the RAI, I absolutely will not drink it; my mind is made up. So I end up having panic attacks because I feel no one is helping me (specifically the doctors) achieve my goals. Then I begin to think about things like – what if I have a reaction to the ATD’s, or my liver enzymes go through the roof and the doctor takes me off of it, but maybe it was too much to start and I refuse the RAI and they won’t do the surgery. I understand this is my phobia but in order for me to combat this I must do it my way so I feel comfortable. How can I possibly start a medication when the doctor knows absolutely nothing about me? I could be a raging alcoholic (I’m not and haven’t taken a sip since I was 19). Not once has he talked about healthy eating/lifestyle, talked about quitting smoking or asked about any other vise I may have or exercise.

I’m quite intelligent and a fast learner. So, it’s obvious to me that in order to have a higher chance at remission, the patient would need to follow a regimental lifestyle, which would include – healthy eating, stress free, no smoking and or chemicals. I don’t think this is possible for me and it scares me because of refusing the RAI.

And this is where the problems start. I own a retail business, which is on the bottom level of my house, three levels to be exact. It is picture framing, which I do need high level of concentration – measuring, cutting, designing, dealing with customers and general management duties. The shop is open Monday-Saturday 10am – 6pm. I have no employees aside from my partner who helps whenever he can if he is not working at the hospital. My business has nearly gone to a hault do to the fact I have not put forth any effort in marketing for the past two years and really have no motivation, and I swear, one day I’ll scream at some poor unsuspecting customer because they chose the wrong color mat. I’m so very tired, yet I can’t take naps (my partner doesn’t like it when I do), after all, I have a business to run. We just recently began preparing manufacturing for our second business, a new company, matter of fact, we received a huge business loan just a couple of weeks before I was diagnosed. This company has taken me nearly three years to prepare. I go up and down those stairs at least 30 times a day, which is extremely hard because my knees now are so painful and weak.

My youngest son is having so much trouble, he’s 17 and do back tomorrow after spending time being assessed in a hospital for three months – severe anxiety and depression and now it’s back to breaking up fights between my partner and son. My mothers house went into foreclosure and I was the only one to take care of it all for her because she went into a retirement home, shes only 64. So we recently moved all her stuff into my home, and I closed down my gallery (not the framing part) to house some of her belongings (we had to clean out our house to make room so there was a lot of packing, unpacking). We will also move her into this house soon (painting, cleaning) – shes vindictive, manipulating alcoholic, very hard lady to live with. And no family to help, other than my partner. This leads me to the next problem – Money.

We have none. Which means we don’t have money to by healthy food. Our daily diet consists of – KD, can soup, hot dogs, baloney sandwiches, peanut-butter and jelly sandwiches, toast, packaged cookies and, that’s about it. My partner has been recently buying me my own food, such as some veggies/fruit some small portions of meat, some cereal. He insists that my kids don’t eat it, which upsets me because how can any mother eat healthy in front of her kids and watch them eat junk? We have about .50 – .80 cents per person, per meal is our budget. I don’t even know if I can afford the medication. This is why my mother needs to move in with us. We don’t go out, no movies, no dinners, no beaches, no shopping, no vices other than smoking.

I have tried everything I can to get some financial help, but there is none because I own a business. Every door has been shut. I’ve run out of ideas, We are literally the working poor. I’m so tired, hungry, angry, sad, sick and so very cold about 8months out of the year – When I say cold, I mean extremely cold. So cold my bones ache, I can’t wear anything nice because I’m layered with 3-4 sets of track suites, I even wear that to bed. My feet never warm up until April. I go to bed with ice cold feet, and wake up with ice cold feet. I’m so cold I can’t think about eating anything cold. I don’t have a sole to talk with, not one friend I can lean on nor family. I told my aunt (my moms sister) her response was, “Your cousin is hypo, and your other cousin is as well and they do fine on replacement hormones.

This is how I look at things –
One of my favorite sayings is, “If there’s a will, there’s a way.” If a person was able to acquire a $300,000 mortgage, and a business loan while on welfare (<-long story), then anything is possible. At least that's how I used to feel. I'm the one who takes care of financial responsibilities, I'm the one to problem solve, I'm the one fix everything, and pick up anything that falls. I feel as if nothing has meaning, that everything I feel is in my head. As most of you know I have a phobia with medication but my worst fear with this phobia is, I won't act on it if I have a reaction because I don't want to be a hypochondriac, I don't want to complain, or its all just in my head, and if doctors keep telling me it's in my head, then perhaps it is. So after all is said and done, I honestly don’t know how going into remission is possible with no one willing to help. I don’t ask for help, I’m the one to help others, but lately I’ve been asking. I have always relied on my mind to get me out of messes – This one, I don’t think I can. Thank you all for listening! ~Naisly Labs:
July 1999 – THS:1.3 (0.5-3.5)
July 2004 – THS 1.03 (0.38-5.5)
May 2012 – THS 0.06 (0.38-5.5)
T4 Free 32.3 (10.5-20.0)
Creatinine – 44 (50-100)
Chloride – 109 (98-106)
Vitamin D, 25-Hydroxy – 70 (75-150)
Calcium is normal.
Iron is normal.

Currently on propranolol 240mg long acting.

How I’m Feeling
pounding pulse
severe depression
severe anxiety
panic attacks
brain fog
extreme tiredness
intolerance to cold
palpitations
dizzy spells
joint and muscle pain
trembling
jumpy
weight loss
no stamina
mood swings
memory loss
constipation
heavy periods
horse voice (at times)
swallowing (at times)
no motivation
can’t make decisions
stomach ache
shortness of breath
acne

[KimberlyOnline Facilitator August 20, 2012 at 1:26 pm Post count: 4294]

#1173958

Hi Naisly – Thank you for taking the time to share your story. You have certainly had a difficult road to travel, but I’m sure that many other posters will be able to relate to at least some of the challenges that you are dealing with.

Hopefully, some of our fellow Canadian posters will have ideas for some resources there, as I’m more familiar with the options that are used in the U.S. (free, low-cost health clinics at hrsa.gov, Patient Advocate Foundation, etc.)

Wishing you all the best as you work to get back on the path to good health.

[adenure August 20, 2012 at 4:11 pm Post count: 491]

#1173959

Hi!!!

Big hug to you! I started to read, but have not finished yet. I will finish your story and respond because we are all worth listening to and we all need support . You deserve and need support (even if it be via cyberspace!). So, once my day settles down, I want to fully read your story. You are not alone in this life. Stay strong & talk to you soon!

Alexis

[karebear August 20, 2012 at 9:00 pm Post count: 5]

#1173960

(((Naisly))) Oh my goodness. You have had a tough time of it! I’m not sure how the system works near you. You need a dr that will listen to you. Telling the dr your issues is NOT being a hypocondriac. It sounds as if you have serious problems. I wish you all the best!!!!
Karen

[Carito71 August 21, 2012 at 7:57 pm Post count: 333]

#1173961

Hello Naisly,

I’m so glad you posted your story. I haven’t read it yet but I wanted to let you know that I will start reading it right now.

Caro

[elf August 22, 2012 at 11:15 am Post count: 181]

#1173962

Hi Naisly,

I am a Canadian and of course it’s good that we don’t have to think of paying for doctors here (that one would be a straw that would have broke the camel’s back). There is definitely less choice of Drs who are pure GD doctors, the endocrinologists are trained across all endocrine systems. Here in NS the main area for endocrinologists are diabetes and weight management. But you know what, once you learn what GD is, all you will need from an endo would be getting your lab numbers to better levels (that will satisfy you in terms of your own feeling of well-being), and after that is just the maintenace that the primary Dr can do.

As you can see from my signature, I didn’t think too long about RAI, and with you set up against it I don’t really know if the ATDs could help you. A lot of those symptoms could be coming from another condition (either diabetes as you said, or peri-, or something else. Of course, in one’s body it’s all entangled and hard to figure which is which. ) My main symptoms were rapid heart beat trembling hands, rage (easily flying off the broom). In those 3 months between my diagnosis and RAI I tried ATDs and quickly understood that they would not make me feel healthy, even though they improved my numbers.

I wish you luck in finding a good Dr who would be tenacious enough to help you untangle your condition. I feel there are a few things going on. GD does happen to the take-charge people, to people who think of themselves as independent and responsible for others. It’s hard for us to shift into asking for help position, into saying “No, I can’t” position, but our bodies give up from the prolonged stress of carrying the world on our shoulders, and give up in terms of GD.

I decided to nip the disease right in the bud, and the majority of GD-ers do that here and in the US, so maybe it could be the fastest way for you to cut through what seems as a wall of hard luck.

[Carito71 August 22, 2012 at 12:55 pm Post count: 333]

#1173963

Naisly,

I have read your story. You have gone through a lot. My post is long too but please do read it.

OK … here it goes.

You know what? I think it is time for you to get well. I think that it is time for you to think of yourself for a change and put you as a priority.

There is so much going on in your life right now and well, the way I see it, you are going to have to decide exactly what you need to do next and do it. Can’t do everything at once. You will have to prioritize and I think your health is way up in the top of the list. Don’t you? Even if it requires to put some things on hold. I know it seems like you can’t let go of all of it. You have a lot on your shoulders and a lot of people are depending on you, right? I’m sure you think about what will happen if you stop all of it and concentrate on getting well. Well, the truth of the matter is that no one can help anyone else when they are sick … you can’t carry on the new shop, you can’t take care of your son coming back, your mom, etc, etc, … until you take care of your health. People around you are just going to have to understand that and give you the opportunity to get well or at least the opportunity to start getting well. You can’t go on ignoring how you feel (physically and mentally).

Elf is right … “GD does happen to the take-charge people, to people who think of themselves as independent and responsible for others. It’s hard for us to shift into asking for help position, into saying “No, I can’t” position, but our bodies give up from the prolonged stress of carrying the world on our shoulders, and give up in terms of GD.”

Stress is a big deal. It kills. It starts a chain of events and if it is not stopped, it kills. I have had my share of stress and I realize that it has played a big part in where I’m now. I realized this when I was diagnosed with Celiac and therefore I made some drastic changes to lower my stress. I even went back to school and changed careers. It is not easy putting ourselves first but we have too. Now I say “no” when I feel I have to. People might not like it but I have come to realize that when I say “no” life still goes on. Things get done one way or another and I don’t have to suffer too much for it.

GD can kill without treatment so that is why you have to think about what you need to do next to start getting well. We have the three options as far as treatment goes and you are going to have to chose one while you can choose. Per the labs you posted, your Free T4 is elevated and your TSH is low that equals hyperthyroidism. Your body is like a computer that needs to be rebooted. It can’t go anymore without the medical treatment and the changes to slow down your physical and mental stresses.

You have the lab #s, the Dr. has the lab #s, what you need now is the treatment. Don’t let it go on too long. You will only get worst without the treatment. Forget hypochondria, you have the labs to prove that you are sick and need help. Before I was diagnosed with Celiac I was told I was too sensitive and therefore I could feel things going on with my body but not to worry, that nothing was wrong. Nothing was wrong????!!! I only had Celiac but nothing was wrong (I’m being sarcastic here) and now I have GD (probably from all the times I ate Gluten and kept my body from the nutrients I needed). I have the labs to prove it and so do you. The Dr can’t tell me any longer that I’m “just too sensitive” and they can’t tell you that you are “hypochondriac” if your labs show that you are suffering from hyperthyroidism (signs and symptoms included).

You mentioned your goals and the Dr.’s not wanting to help you with them. What are you goals? Tell the Dr., “these are my goals”. “This is what I know I’m doing wrong (smoking, etc) and this is what I’m doing to correct it.” If you have stopped smoking, tell the Dr. about it. Let the Dr. know you are doing what you need to do on your part and let him know your goals and that you need him/her to help you accomplish them. You have to spell them out for them because otherwise they will not know. And remember, you have to make sure that the goals are thought out taking into consideration the 3 options you have for treating GD. I wish we had more options. Believe me …. I’m currently struggling with the same liver enzyme thoughts you have and seriously considering the other 2 options. I’m afraid of RAI and surgery too but I’m even more afraid of dying.

There is just so much we can take as individuals and when we are sick we can take even less and we have to realize that. You are your own advocate on this. If you let go of the strings of the things that can help you get well, everyone around you will too.

You are a fighter. You have gone through a lot and are still here to tell us about it. All the strength you have managed to acquire in the past to help yourself be here today and also help others and do everything that you do, all that strength, you need to find it again now for you … to help you get well. You will need to prioritize and use that strength and use it accordingly. You might find yourself being able to use what you got only to get well but in the long run it will be worth it. You will have to tell yourself that you will have to do things that you don’t want to do but that you have to do … like take your medication (which ever treatment you choose), stop smoking, reduce stress, etc.

Is there a women’s group in your area that might be able to help you out? Or be a support group? You can always come here. You have us here to brainstorm, get ideas, share our experiences … you are not alone but a women’s group in your area would be of great help.

Thank you for sharing your story. It feels good sharing and knowing that you are not alone. You are a smart woman and you can do what you need to do to get control of the situation and do what you need to do to get well.

Please keep us posted.

Wishing you health, peace, and happiness,
Caro

[adenure August 22, 2012 at 8:55 pm Post count: 491]

#1173964

Hi again,

I too think it’s time to get you well! If you take care of yourself, you will be able to take care of others, especially your children and family. I’m not saying that you aren’t taking care of them right now, but I know how it is to be hyper and try to take care of your family- near impossible. I know your children are older, but they still need their mom. YOU need to be well for YOU and for your family.

All of your feelings, fears, and worries are completely normal because Graves causes all of it! It is not you, it is the Graves which is either creating or at the very least, exacerbating your worries and fears about taking ATD’s or the RAI and everything else buzzing through your mind. I get it because I was there not long ago. I understand your concerns with RAI; I had the same worries. I chose surgery, but I did start with methimazole. Yes, as you can see by my signature, my liver enzymes shot up 8 times the normal amount, but I stopped the meds, everything went back to normal, and I am completely fine. As a side note, it is very unlikely to happen to you (1% of those who take ATD’s have this problem) and it can be monitored with a simple blood test. Caught early (mine was caught 7 weeks in), it reverses itself.

The betablockers are helpful, but they are just a band-aid to help us until we get treatment for our hyperthyroidism. Please reconsider accepting treatment for your Graves- primarily with ATD’s to start to get your levels balanced and under control and to help rid you of the symptoms you listed. Take the ATD’s. That will help you regain control over your body, physically, mentally, and emotionally. Then, you will be able to choose what path of treatment you want to do- whether it be to continue on ATD’s, RAI or surgery. Please don’t let this disease take over anymore of your life and the gifts you have to offer to those around you.

[Naisly August 28, 2012 at 5:49 pm Post count: 143]

#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

[KimberlyOnline Facilitator August 29, 2012 at 10:42 am Post count: 4294]

#1173966

Hello – Keep in mind that we are fellow patients here, not docs, but a couple of comments…

A significant portion of patients with Graves’ will also have positive TPOabs.

For patients who *do* have both Hashi’s and Graves’, it’s common for these patients to eventually end up hypO, due to the Hashi’s. I have never seen any studies to the effect that ATDs will have an impact on the course of these dual conditions.

You deserve to have a doctor who will take your questions seriously, but remember that there is a lot that isn’t well understood about Graves’, and some key issues where even doctors disagree. Unfortunately, you aren’t likely to be able to get all of your questions 100% wrapped up with perfect answers. And keep in mind that the longer you postpone treatment, the longer your recovery is likely to be — and the higher the risk of serious complications.

Take care!

[Carito71 August 29, 2012 at 12:18 pm Post count: 333]

#1173967

Hello Naisly,

I noticed that from May to August your free T4 has increased so I would assume that you are getting more hyperthyroid and becoming more in danger of falling into a thyroid storm (unfortunately, without treatment, this will land you in the hospital).

I too was given 30mg of Methimazole at first but I was asked to take 10mg three times a day so I spaced them out 8 hrs apart. Also, I got labs right before starting so as to have a baseline and the Dr. ordered labs every 4 weeks. I started in June and by my August appt my Dr lowered my dose to 10mg/day because my TSH was in the normal range and my free T4 was low.

My TPOab is also positive and I wasn’t told anything about having Hashimoto’s. I was told I have Graves. This is because my TSI is elevated. I will ask my Dr. about my TPOab next time to see if he can determine if it is Hashi’s related.

I want to tell you what happened to me because it reminds me of what is happening to you. The first Endo I went to see prescribed the 30mg Methimazole but told me to take it for 6 weeks and then stop completely and to see him 8 weeks after stopping the Methimazole. I knew that since my labs showed that I had hyperthyroidism I needed the medication so I started taking it as prescribed but I started looking for another Endo, who I found and setup an appt with him. Endo #2 also wanted me to take the 30mg/day but wanted to monitor me more closely (labs every 4 weeks with followup appts). I didn’t like how Endo #1 wanted to stop the Rx cold turkey and did not want to see me until 8 weeks after stopping it (plus other things that I didn’t like about him and his office staff). He did though ordered labs for after taking it for 6 weeks so I felt good about that in case I didn’t find another Endo in time. My point is, yes, you need to be monitored when you are on Methimazole so if the Dr. did not order labs I would call back and ask if he could order labs for 4 weeks after you start taking it to see if that is possible. And if it is not possible, ask if they could tell you what your lab schedule will be because you know that with Methimazole you need to have labs periodically. Also, if you start to feel sick when taking it, you can call and ask for assistance, can you not? Most Dr’s will order labs right away if you are not feeling well and are taking Methimazole, especially if you have developed liver related symptoms of if you have developed flu like symptoms. The labs should include liver function tests and white blood cell count.

If I were you, knowing that the fT4 # is getting higher, I would be worried about not taking the medication because as you get more hyper your chances of getting a thyroid storm increase. Yet again, yes, you have to be monitored when taking it so call your Dr to setup a lab schedule. When you start taking the medication it will take time for it to start making you feel better. It took me about 3-4 weeks to feel any changes so the sooner you take it, the sooner you will get well.

I wish you the best with getting started on your medication. I’m so glad you have seen an Endo and that you have your prescription. Hope you get the labs situation resolved soon. Keep us posted.

Caro

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