It was 3 mo. ago I woke up with a swollen goiter, difficulty breathing, alot of pain when swallowing, dizzines, numbness mixed with pain, headaches. It continued a little over 1 mo. breathing being worse 3 times. I believe I may have had the goiter maybe for 1 yr as I noticed a difference in my swallowing and neck.
I was in a rollover car accident 4yrs ago that caused whiplash, stiff neck pain that I still have. When I move my neck I sometimes still feel/hear crackling.
I'm on generic synthroid 2 wks. My goiter has grown since the past 3 months and right side of my neck is thick, there is an area that seems to be attached to the goiter. I had ear pain in both ears for about 1 mo, my right ear hurt more. The pain was not that of an ear infection, it was different mixed with hot burning feeling. I was feeling good 1 week starting 2 days before I took my first pill.
My ear pain is back but it's more of the burning feeling I'm experiencing and seems to be changing from ear to ear (one more than the other or both at the same time). At the same time the side of my neck mostly right side and under my jawline is also feeling this way. For the last 2 yrs I have also been getting painful sharp pain in my right eye.
Something strange is growing behind my right ear one is almost like a blister more oval, the other a little bigger and hard they feel sore if I press it.
May Dr says I may be hypothyroid what really concerns me is cancer. Is there a chance I may have it or can these symptoms be normal? I appreciate your opinion.
Please get an ultrasound of your thyroid. If you aren't currently seeing an endocrinologist, please find a good one. Your goiter shouldn't be growing at that rate and you shouldn't be getting lumps by your ears (lymph nodes?). Keep us posted.
You need to get your goiter evaluated by a thyroid professional.
I was in an accident which caused a whiplash 28 yrs ago and I still have problems with pain (no ear problem) down my neck, back/under shoulder blade and sometimes down my arm. I also feel and hear neck crackling, so, I do neck exercises which seem to help.
Synthroid is more stable than natural which comes from a pig and has way too much T-3 and too much for us humans, although some do well on it, if there is no heart issue(s) and you see doctor regularly to be monitored.
You have not seen the endo yet, right? Ask him to do TSH, FT-4, F-3, and antibodies for both hashi and graves'. Get copies with the Labs reference range - saying normal is not acceptable. What's normal anyway! Normal can mean anywhere up or down the Labs ref. range and some still go by the old TSH levels of 5 or higher. What is normal for me might not be normal for you, or what is normal for the next person might not be normal for me. However most feel best at a TSH around 1.0. One shoe does not fit all!
If doctor didn't mention goiter after ultrasound I would take it as, no news is good news. :)
Ask if endo suggest FNB per your ultrasound of goiter. If FNB not necessary, ask if treated with thyroid hormone T-4 goiter will shrink or would you need surgery.
Perhaps utahmomma can give you more on the goiter situation.
After my accident I didn't have problems with swallowing, just what I mentioned before. Plus my neck didn't feel like it could hold on my head, i.e., it felt like my head wanted to fall off my neck, so I was in a soft brace and off work for a while. It wasn't all that serious, thank God. But I still suffer off and on with pain. I wouldn't be surprised if arthritis hasn't set in by now. I hope your accident wasn't too serious as well.
Be more aggressive with your doctors. I think if you learned more about you thyroid issue, the more confident you will be, and then be able to take the bull (doctors and your health matters) by the horns. ;)
It's nice meeting you as well. Take care of yourself and don't worry too much about cancer, until you have something to worry about, it's a waist of your precious mind and time. Like I mentioned before, very small percentage of goiters/nodules are cancerous. Keep hanging in there and God Bless You! Keep us posted.
I appreciate the information and motivation you have both given me in such a short time and welcome anyone's advice. Utahmomma I saw your other post, Thank you.
I saw my famild Dr 8/14 she ordered an ultrasound, esophogus x-rays, and bloodwork. The tests were done 8/23 I think the ultrasound was to see if I had a lump, I came out fine for the other test.
A week after 8/14 I called the clinic to ask for my lab results, they called me said my thyroid levels were very high and they were going to reffer me to an endocronologist. I got the other tests done on 8/23 called them a wk later to ask for those results and my referral had not been worked on, because the receptionist said I had asked her for the refferal of another kind of Dr. which was not true. The ultrasound revealed I had a goiter, that's all I was told.
I saw him 9/28 a little nervous, answered his questions and ended up telling him I felt the right side of my neck was thicker and my right ear had been hurting for some time. He said I was probably checking it too much, didn't say anything about my ear. He couldn't find my lab work that was faxed to his office, another bloodwork was done. He called me said my levels were low and put me on medication. He said he would see me in 6 wks, but did'nt mention anything about my goiter.
He is a nice Dr he took the time to call me first thing in the morning (never seen this). But I'm hoping he takes me seriously, because I'm depending on him. I was going to call him yesterday I have to do this today. I think I have a problem with speaking out to Dr's, I'm trying to work on it.
GravesLady thank's for the web address. I'm sorry to hear you also had an accident, thank God you are still here. I was wondering if when you had your accident by any chance did it hurt to simply swallow right after? I had this happen to me I brought it to my family Dr's attention said it was normal in a situation like that. I know it lasted a while but can't remember when it went away or when I learned to live with it (or ignore it).
I don't really know what to look for or ask an Endo. but any advice or suggestions are welcomed.
Utahmomma and GravesLady I'm really glad I met you both, take good care and God bless. I will keep you posted.
Oh - being aggressive with a doctor and how to find a good one . . . my favorite subjects! :-)
Well . . . let me tell you my horror story. I had a full-body scan (CT) which found a nodule in my thyroid. That radiologist suggested I follow up with my doctor. My doctor ordered an ultrasound. Ultrasound showed small "mixed" nodule (some liquid, some solid) - I researched the heck out of thyroid nodules (Google is your friend!!) and decided that, because the nodule was so small, because it was "mixed", and because my gut instinct told me something was wrong I asked my doctor for a good surgeon. (Yes, all my thyroid labs were normal - they quite often are with thyroid cancer). My surgeon removed the right lobe (where the nodule was) but the pathologist didn't find the cancer until I was in the recovery room (too late to take the left lobe out).
After the surgery I was referred to an endocrinologist. It just happened he was the chief of endocrinology at the large hospital I was treated at. So I figured, he's good, right? Ha! First thing he did when we met me was to scream at me for having a "perfectly healthy thyroid lobe removed." After I picked my jaw off the floor and pointed out the fact the nodule had papillary carcinoma in it, he told me I should have seen him first because I could have lived with that little bit of cancer for years.
Then he yelled at me for being overweight (5'3" and 142 isn't slim but it wasn't obese either). He LOVED to yell at me for encouraging my family to get their "healthy" thyroids removed (3 sisters with papillary carcinoma - one into the lymph nodes, other sister "pre-cancerous" and daughter "pre-cancerous"). I put up with it until my daughter's surgery then I just lost it. I told him he was a jerk (okay, a bit stronger than that), grabbed my chart, stormed to the front desk, demanded my records, and told him he and his god-complex were fired. That was the point when I decided I wasn't going to put up with BAD doctors anymore.
I called my regular doctor (in tears), explained what had happened, and asked him who he would refer his wife to if she needed an endocrinologist. I was referred to the most amazing endocrinologist and I'm still with him. He even supported me and said he would have done the same thing when I decided to get the other half of my thyroid removed - just in case (especially with my family history).
I found that's the secret - start with a doctor you know and trust and have a heart-to-heart (even if it costs you a co-pay). Explain what your concerns are and ask your doctor who he/she would recommend if it was their loved one. If you don't have a doctor you know and trust, find a support group or other patients and ask them what they like, and dislike, about their doctor(s). Ask if they have heard of any really good doctors. Keep "shopping" until you find one that will be your PARTNER in health care.
Okay - I'm tired and rambling. Get the results of your ultrasound. If you don't think they were read correctly, ask for a second opinion or for your doctor to look at the films (not just read the radiologist's report). Find out if there are nodules and if those nodules are solid, fluid-filled, "mixed" and if they are "hot" or "cold".
Do all the research you can so you know plenty of things to ask. www.endocrineweb.com and http://www.cumc.columbia.edu/dept/thyroid are good starting points.
And, hey, if you get labeled as a "difficult" patient (or, in my case, worse I'm sure) who really cares? It's your health, your life, your money - insist that your doctor(s) take it as seriously as you do!
Sorry - I just got out of a 4-hour horrible meeting. I need sleep. I hope something in here made sense!
Keep us posted - there is a lot of good advice and experience out here and most of all: love and support!
I read your story and I'm amazed. I had a feeling there were some Dr's who didn't really care much. I appreciate you taking your time in sharing your experience with me. I'm glad you took that step, and that you are better now. It is motivating for me so I can learn to stand up for myself and speakout if needed, especially in these circumstances.
I feel intimidated by Dr's and feel helpless in my own health problems, because I know when I say I feel bad somewhere they usually try finding another reason that doesn't target a health problem (like not excercising enough, or some other reason), and just give some kind of pain reliever instead of trying to find the problem. That's why I lost trust in the ones I've had. I'm hoping my Endo won't let me down.
I don't know what is happening to me but it's scary. Remember what I said about my ears, the 2 uneven bumps are bigger and now they are a bruised color like purple? The strange thing is the night of the 16th I thought I felt a little bump starting behind my left ear. Well, it was but it grew too fast it's the size like one of the right ones.
I just talked to my Endo right now he said I can go see him Friday or Monday morning. I asked him if he knew if my ultrasound exams had been checked for anything suspicious. He said "like cancer"? I replied yes, and he said it would be unusual for me to have it, that my ear problems may related to an infection. My bumps will hurt (I think it's because I check them), and he said when it's cancer it doesn't hurt.
I think that if I don't get the proper treatment for my thyroid problems it will be because I have no insurance. I've applied for medical and they want more information to see if I'm disabled. I'm not, so I'm sure I will be denied. My other option will be getting qualified under my husband's insurance (which is really what I preffer). He will be getting his benefits in 1 mo., some of his co-workers have told him they cover 100%. I know insurances don't take pre-existing conditions so I will probably be faced with this.
I will go for now, after your meeting you still took the time to write? Thank you! I appreciate this. But, next time you should relax and rest first your body needs it. I understand and don't mind if you can't write soon. GravesLady and you have welcomed me very well and have been an encouragement for me. I hope to learn more from both of you. You also make me feel at home.
I understand the insurance problem and hoe frightening it is. Been there for about a year and it was frightening. In fact, one of my sisters put off her diagnosis and treatment for a few months to get better insurance and apply for life insurance before her file got tagged with the big "C" word.
If your doctor thinks the bumps are an infection, what would it hurt to try you on antibiotics and see if it makes a difference. He is correct that it's rare to have thyroid cancer but, as you've seen on this forum, it's not unheard of. You still need to be checked for it. Many doctors have preconceived notions of what you could, and could not have. Don't let them do this to you!
One endocrinologist (the one I fired, in fact) stated that "you cannot have Hashimoto's and thyroid cancer" - my family proved that wrong. My mother has a huge goiter and we KNOW it's cancerous (4 / 5 of her daughters have thyroid cancer) but she won't get it treated because one of her friends said you can't have a goiter and thyroid cancer.
You will find that many doctors may write you off as a hypochondriac, "emotional", or looking for pain meds. Don't take it personal - just walk away and find a different doctor.
If you get in a pinch for a doctor, hit this forum up. I have connections in Spokane, Seattle, Portland, and Idaho. I'm not sure what part of Washington you are in but they may be an option (especially after you get on your husband's insurance). I'm not sure about your "pre-existing" condition if you don't have a diagnosis but it would be worth trying to get them to cover as much as possible.
The bumps (I'm betting they are lymph nodes) sound frightening - please don't put them off until the insurance kicks in, even if it is just getting on antibiotics to see if they will go down. (Don't forget to take acidophilus with the antibiotics)
Utahmomma I've read about lymph nodes aren't those the ones they do surgery on (take out)? Are they cancerous or is it like an infection? Because yesterday that I spoke to him he did mention lymph nodes but didn't seem worried.
We relocated to Moses Lake we are close to Spokane probably 1-2hrs? I also have my Dad & sister in Seattle. I probably sound like a broken record but I'm really grateful to you for helping me in this. My husband doesn't really mind the distance as long as I'm in good hands (me too), went to seattle alot before we moved.
You're right though I don't think I have a diagnoses. My Dr wrote a note for me 8/23 it says...
" Above patient has hx of Dysphagia and abnormal thyroid antibodies probably representing a Thyroiditis. She requires refferal to Endocrinologist for further evaluation and definitive treatment"
I know there is a pill they give some people, I think it's for a couple of days and you can't be close to people. My Endo mentioned a little bit but said he would explain later.
Can I be checked for cancer in my goiter during the same time I'm on treatment? I don't even know how big it is yet? I know my thyroid levels are important but I really would like to know more about my goiter. Do you know if an Endo is able to read the ultrasound X-rays? I will see him Monday he said in the morning didn't give me a time.
I'm so sorry about your mom, I can't believe her friend is telling her that. That's terrible I hope she can soon realize on how dangerous her condition really is and get treated as soon as possible. Then thyroid cancer can run down the family, that's scary.
I'm not 100% sure on the insurance and I'm sure it varies by company but you haven't been officially diagnosed with anything right now.
About your breast pain - NEVER, NEVER, NEVER let them tell you you are too young for a test. I have known plenty of women in their 20s and 30s who have had breast cancer. Do you have a family history of any cancers?
Your breast pain doesn't sound like it is thyroid related but there is a rare form of breast cancer (sorry to keep throwing the "C" word at you) called Paget's disease that has symptoms similar to what you have experienced: http://www.center4research.org/pagets.html
I'm really not trying to frighten you - I just wish someone would treat your symptoms and not just tell you "you're too young" or "it's a normal goiter". Arrgghhh!!
We need to find you some competent medical help. I'll start on my Washington and Oregon network.
I understand the RAI is after surgery only. My gut feeling tells me I should get a 2nd opinion. Can you please stand by with a recommendation? I've been having the breathing and swallowing problem again. It doesn't seem to want to relax. The swallowing pain changes. It feels tight inside, I'm already use to swallowing hard. The other day was a bit strange the little pill got stuck and I couldn't make it go down. I kept drinking water, It may have just dissolved where it was.
I don't remember if I mentioned what happened to me in June. I had just moved to Moses Lake. I had soreness in my right breast for maybe 2-3 yrs off and on, also some in the left (less). It was in the 1st or 2nd wk of June, the pain became worse by the day. I will never forget how terrible it was, it was in both sides the right being worse. It involved extreme burning soreness pain, itching on nipple. Couldn't go anywhere and couldn't stand the bra a difficult time sleeping. I had very bad pain in upper back/shoulder area and in my right arm. This lasted about 3 wks. I became very depressed and didn't know what to do for the pain. My husband thought it was some kind of development thing I was going through?. I called the hospital to see if I could get a mammogram or something. They gave me a # to call, I wasn't old enough for one. My Dr did an exam & gave me pills. The pain started decreasing on it's own (before I took the pill-took 1).
It started hurting again, it hasn't gotten as bad as the last time. Again the right side feels worse and is bugging me to sleep and throughout the day. I had noticed a small change for a while, the right side where the strap that attaches to the cup goes, that area is thicker than the left side and it feels sore (worse by wearing bra). This adds more pressure to my other problems. I doubt it's related to my thyroid. I'll tell my Dr next wk and see if she can oder some exam.
About your mom I somehow understand her. I feel in a state of denial sometimes with my health problems and wonder if natures way is the best way, like eat the way it says in the bible. I know God can do miracles but I think he can also do them through a surgeons hand for example. He is my only hope in getting better. I truly wish you and your family the best in health.
>>>I know there is a pill they give some people, I think it's for a couple of days and you can't be close to people. My Endo mentioned a little bit but said he would explain later.
The pill you are talking about is I-131 and is radiation hooked (not a technical term, sorry) to iodine. You will see it referred to as RAI on this forum. It's given to thyroid cancer patients after surgery to eliminate any thyroid tissue remaining in the body. You CANNOT have it while you still have a thyroid - your existing thyroid will absorb it too quickly and, if there is any cancer, it won't be eliminated. I'm going to have this treatment in mid-November because my TSH levels are rising too high after having my entire thyroid removed.
>>>Can I be checked for cancer in my goiter during the same time I'm on treatment? I don't even know how big it is yet? I know my thyroid levels are important but I really would like to know more about my goiter. Do you know if an Endo is able to read the ultrasound X-rays? I will see him Monday he said in the morning didn't give me a time.
Thyroid levels won't tell you about thyroid cancer. Most of us who have had cancer had completely normal labs. The only way they can determine it's thyroid cancer is by examining the nodules on an ultrasound then, in most circumstances, by doing a fine needle biopsy (I just elected to have mine taken out without the biopsy). Your endo will know what to look for on the ultrasound.
As for my mother - I don't quite understand her. She says she is afraid of surgery but she's had two elective ones in the past (for carpal tunnel). She knows she probably has cancer but is a huge state of denial. My mother prefers to treat things with herbs and naturopathy. Nothing against holistic treatment but when you have an overwhelming chance of having a very treatable cancer it's best to treat it aggressively. She complains about her late-brother. He ignored prostrate symptoms for 5 years and when he finally went to a doctor his cancer had spread to his bones. She says how stupid he was not to get medical treatment yet here she is, 10 years later, in the same circumstances.
The type of thyroid cancer my sisters and I have is NOT supposed to be hereditary. In fact we are all in a university study out of Connecticut because we are such an anomaly.
Keep us posted on your Endo visit and I'll keep you posted on the RAI treatment. My best to you!
I don't have a family history of breast cancer. My mom says she feels this way right before her period every month. Except not the awful itching like I had in June. she said she has gotten mammograms and they have been clear. I just found out she has Diabetes (not good).
I remeber reading some cases of young women like you said in that age range. That's actually why I tried getting something done. My Dr said it was good to have support like sports bras. I always wore support except to sleep or if it became a problem. I think she may probably order something this time. The clinic I go to is the same one my mom has gone to for yrs and where she took us as kids. I'm sure this will be our last vist. Winter is coming and there are too many sharp curves that way.
We need another family vehicle urgently, it's hard because of my medical bills. Probably do a trade in or something. I hope I qualify on my husbands insurance I've heard it's accepted very well and even covers massages (never had one).
I know it's not fun hearing the "C" word. The horrible thing is it seems to be able to get any part of the body! and anyone. I'm going to look into the site you provided and do the search on Paget's disease. I will stay in touch and Thank you so much for your help. Take Care!
I looked into the site, the scaling it sounds similar to the way it gets after breast feeding? Even though I took the step of getting checked in June. I still thought I needed a lump to really have a problem. It's really not like that. I can't believe how things happen. I mean like Cancer it's probably not detectable in the begining. When it usually is it's usually because of symptoms and sometimes by then it's more advanced (that's scary).
I read about you having Diabetes, I'm sorry. I hope you do well during your RAI. I really appreciate your help, please do what you need to make yourself feel better through this. I'm thankful to you and everyone that makes this site what it is. Everyone trying to help one another, that's caring. Take Care!
Don't panic too much about your breast. It could be a fungal infection or a number of other things too. Don't let it go though (just in case)
Today I went off the synthroid and tomorrow I start the diet. Not to happy about it because, like you mentioned, I'm diabetic so the list of what will fit into both diets is pretty much raw vegetables and fruit. Tonight I'm enjoying my last cheese for a month. :-( I did manage to find a good butcher who doesn't add any salt or additives to his fresh meat. I can have up to 6 ounces of fresh meat a day (no fish though) so I'm going to find my way through this somehow.
Thank you so much for YOUR support but this thread is about you. Your doctor's appointment is tomorrow, right?? Good luck and BE AGGRESSIVE! You're not there to make friends but to take charge of your health. Insist on the best care possible! Keep us all posted and our thoughts and prayers are with you.
I checked with one of my most trusted friends in Washington State (he works in the medical field) and he checked around for the best endocronology programs in your state. Here's what he said:
>> Have your friend go to Seattle to the Univ. of WA Medical Center or Swedish Hospital or Northwest Specialty Hospital... They're the biggies that have the expertise to see someone like her.. .if she can't get that far, have her consider Sacred Heart Medical Center in Spokane... excellent hospital with good resources... If she can't even get that far, then Central WA hospital in Wentachee is a medium sized hospital that may have endocrinology... Unfortunately she won't get far with Good Samaritan in Moses Lake.
No to 'dis on your local hospital but many rural hospitals don't have the personnel or equipment needed to make tough diagnoses (there is a local, rural hospital here that doesn't even have an MD on the emergency room staff - it's staffed with PAs!).
Sorry I just came around, busy days (feeling like I haven't slept enough). Thank you so much for this information. I will try to do something as soon as possible.
I saw my Dr 2 hrs away and she saw the bumps behind my ears, said they looked like cysts that could become infected but looked ok. That if they got really swollen and hurt alot I could call her to prescribe me an antibiotic (not to touch them). I don't mind the antibiotic.
I told her how I felt about the Endo she is going to try and find out what he wrote down regarding his evaluation of me.
Also, that I felt like stopping my medication because I didn't feel confident of a diagnosis from Endo. That I really needed to know if my goiter was cancerous and a sure diagnoses of hypo or hyper? She asked me if I had been diagnosed for my abnormal antibodies? She said my abnormal antibodies were high. Indicating a possibility of thyroiditis like Graves disease or Hashimoto's an example. I'm waiting on her call now.
I made a decision based on my gut feeling and stopped my medication. I believe I may have symptoms of hypo/hyper and I feel I may do more damage than good by taking it? Especially after having an experience like this with my ears and not knowing if my Endo is diagnosing me correctly. I was going through some strange thing. My scalp like in my head felt tingling like when getting goosebumps, constantly throughout the day. Weird feeling! I thought there were worms in there or something!
It's been 2 days without my med, I hope I'm doing the right thing. I seem to feel better just feel dizzy, sleepy, still some pain when swallowing.
My family Dr thought I was Hyper instead of Hypo. Is there a way to properly be diagnosed or is it just by how we say we
feel? How are you doing?
Two days without your meds will definitely make you sleepy. What did the doctor you met with say about you going off the meds? You might want to call her and talk to her. I'm not that familiar with the effects of stopping your meds without a doctor's supervision. I do know that the 5 days I've been off my synthroid now for the RAI is kicking my butt.
Here's some good information on your goiter and what may be causing it: http://www.endocrineweb.com/goiter.html
From what it looks like, stopping your meds now may increase your TSH and increase the size of your goiter.
What you need is for a doctor to run some good labs on your thyroid. GravesLady is the expert on the site about labs and what they mean but you do need to have your labs watched closely.
Going by how you feel is NOT the way to diagnose thyroid conditions. Your labs need to be checked carefully and followed regularly. You also need ultrasounds to watch for nodules. Is the doctor you spoke with going to order any labs or an ultrasound?
Did she provide you with the name of another endo?
Sorry, I didn't mean to worry you. That is very sweet of you. Dr wants me to wait from stopping med until she can find out what the Endo's notes are. She didn't say about ordering another ultrasound or bloodwork. I hope she calls me today so I can bring it up and ask if she can reffer me to one of the places your friend has recommended. I will probably need the refferal right? Can you please tell your great friend, I really appreciate and Thank him from the bottom of my heart in taking his time to do this for me, God bless him. Utahmomma I don't know what I'd do without you, God bless you and Thank you for caring & helping people like me.
I read the link, you are right it will more likely be worse without the med. I don't know what to do though, what if it's the wrong med for me, what if I'm not hypo? It's so hard making decisions, just makes me wanna cry. I don't know the difference in medication or dosage for hypo/hyper. I'm feeling unbalanced, I was feeling this way before starting the med & really sleepy. Do you think I should still take the medication even if I may be hyper instead of hypo?
I met a friend at my kids school (Aug) that's a massage therapist. She was telling me about a nutrition program she is studying & doing. She said you go by a diet, it's different for everyone. You get tested by a sample of urine & saliva. Going by #s it will let you know what nutrients your body is lacking or has too much of. What possible health problems your #'s are aiming towards & what to do to get them right. I'm thinking of trying it to see if there's a change.
You're not feeling very well being off your med, that's terrible. Hopefully the RAI can make a difference and you can get better soon. Do you need to take the synthroid for life? My Endo had mentioned finding out if I had to take medication for life? That sounds scary! I'll let you rest & take care of your self.
zzzzzzzzzzz.......(just a nap to try & get through the day)
I don't undertsand why the pain when swallowing changes so much it's not always there it's more like numbness?
Utahmomma I just saw your other post, I can't believe I missed it! You're lucky to have a good butcher though, I've never had one. I bet it has to be an adjustment trying to be strict with your diet. Talking about cheese, I know. My mom makes homemade white cheese like the cacique brand that's called queso fresco casero, I haven't learned though. Anyway, be strong and just think it's worth it & healthy! Take care.
Sorry, just got home. Had to attend a dinner tonight and it was really taught to just eat "naked" lettuce and tomatoes while everyone else was enjoying a full dinner. Oh well, if it means getting my RAI over with, I'll deal with it.
About the meds: you are going to have to have your labs run regularly and your ***NEW*** (hint) endocrinologist will have to, basically, make an educated guess what type and dosage of medication to put you on. I don't remember ever talking to or reading anything from anyone who didn't have to have their medications adjusted a few times. Mine started me on Levothyroxine and it DIDN'T work for me - the same dosage of synthroid worked great though. All of my sisters and I have had our medication levels adjusted over time. I started at .075mcg and am now on .200mcg. One of my sisters is on .300mcg
It takes some time, labs, and great communications with your endocrinologist. Both my endo and I preferred to keep me on a slightly higher dosage which still kept me in the target area of my labs and allowed me enough energy to keep up with my life.
As for the confusion and wanting to cry, welcome to dealing with idiot doctors, being scared out of your mind, and probably a good dose of brain fog. Stopping your meds is probably adding to the brain fog. Please make a call to get an endocrinologist soon you may not need a referral - call the endo's office and explain the problems you have been having - maybe talk to a nurse at the doctor's office. I'm concerned with you being off your medication with a goiter and nodules and no good medical treatment.
My favorite is when a doctor will tell you to "learn to relax" - the tension from holding back a scream (or choking the doctor) sends me on a whole new level of stress.
As for the pain/numbness with swallowing. It gets painful if my head is turned wrong sometimes but the rest of the time it feels like I have a lump in my throat. Is that similar to what you are experiencing?
I've found out that if you don't laugh you're going to cry! Besides, I'll bet my sarcastic wit is sharper than any surgeon's scalpel. :-)
Keep your humor up too - it will help get you through all of this!!
I'm on the "diet" (ever notice the first three letters in that word??) until my full radiation dose - hopefully 15 November. Tonight was a birthday party for my dad and nephew - it wasn't fun watching everyone eat whatever they wanted while I picked the cheese out of my salad. Oh well, now I'm home and can cook my 6oz of additive-free ground beef without adding anything to it. (sigh)
It made it easier that I was eye level with my mother's huge (guaranteed) cancerous thyroid the entire time. The right side of her neck sticks out a full inch more than the left side. We ALL know it is cancerous but she won't take care of it. Then again, she is diabetic and I watched her scarf down cake, ice cream, pizza (thick crust included) and cookies. I forced her to check her blood sugar and it was at 215 (that was before the cake and ice cream). I DON'T want to be like that so I'm taking care of myself - right down to the lettuce and tomatoes.
I'm not familiar with your health card but I do know that there have been investigations in this state regarding those type of health cards because they only cover one or two doctors and don't cover many procedures. I'm keeping my fingers crossed about your husband's insurance.
Yes, I do feel like there's a lump in my throat & sometimes when swallowing like there is something stuck in there. The pain is usually off/on through out the day. I can't really tell what triggers it though. I'm taking Levothyroxine 50mcg. I notice about 2-4 hrs after taking it I start feeling worse. My energy seems better, still get dizzy,some brain fog. The 3 days I wasn't on it the pain in my ears was decreasing. I took it yesterday/today and my ears were hurting all through the night. I get some dull & sharp pains in my head suddenly, tingling through my face. I'm going to have to try keeping a log on my symptoms.
Thank's for your prayers I know they helped. My husband was told he had to wait 2 mos. after getting hired directly through the Co. before getting his medical benefits. Yesterday they gave him an orientation appt.(Nov 2nd) to discuss Medical benefits. I hope & pray that I can be added on & qualify. I feel like cancelling appt with Endo. It cost $260 for my first appt. still owe $160 (need to pay before I talk to him). I can't wait to change Endo's asap. I feel bad not giving him a chance but it's for the best.
Have you heard of healthcareOne, it's a discount medical card.
I got it before I started posting here. It's $49.99 mo so far it hasn't helped. My Dr's are not on their providers list. Someone told me of combination of insurances but is so confusing to understand.
How long do you need to stay on the diet? Lettuce & tomatoes doesn't sound very tasty when it's dinner. I know it's hard, try to stay positive & remember it's for your health. I'm trying to learn patience & taking one day at a time. When I realized I was sick, my family wanted to know what was wrong. My mom & older sister knew 3 people who had a thyroid problem. They asked around & were told there was no reason for me to worry that it goes away by taking medication. In my heart I felt like there was probably more to it. Now with the support of people who I can relate to, I don't feel alone anymore.
Thanks! Birthdays or any get together with my family aren't too tempting - they can't cook! That's why I'm glad the RAI will mess up Thanksgiving.
My mother's turkey either turns out like sawdust or is bloody. I prefer bloody 'cause my sisters and I will distract mom while the others go and microwave their turkey. Not much you can do to save turkey that cooked OVERNIGHT though (and dinner is a 2 in the afternoon). Don't ask, I can't figure her out.
Fun development though, I tested my son's blood sugar yesterday because he looked a little clammy and was grey and it was at 226! I've been keeping an eye on it and it's bouncing between 260 and 75. Time for the glucose tolerance test, diet, and medication. Rough stuff for a 15 year old but better it was caught now. He nearly cried when we had to dump the Mountain Dew though.
You always put a smile on my face:) Thank's for the encouragement. I don't think I would've done as well as you. Birthday parties can be tempting 4 me, especially if the cake is Tres Leches! I'm glad you are taking care of yourself! I'm crossing my fingers & toes (if I can?) for my husband's insurance!:) If not life goes on, bills included...
Sorry... I haven't been around lately confrences & helping our kids with homework in areas where they need help. It gets pretty hard trying to explain things to them, especially when I feel blank minded:( My husband helps our 4th & 6th grader.
Getting back, I'm happy that my husband's insurance covers pre-existing conditions! The coverage is not 100% it's 80% if you go through their preferred providers & 40% non-preferred. I'm having a little dificulty choosing between basic, standard, premium. I think the premium is probably better with lower deductible even though the monthly cost is a lot more than the other ones. It's ok though, worse not to have insurance.
I read your post & you are just too funny!:) I hope your RAI is going well. Good luck to your son, it's good it was caught early. It's nice coming back again. Take Care! I will stay in touch.
Your story sounds a bit like mine except I started putting on weight during my 2nd marriage (I'll go into all the rest with you off line) and got nothing but "you're fat", "I don't like your hair", "change that shirt" the entire time. I had no idea I was diabetic and my 1 meal a day diet was adding to the problem, I thought I was trying to lose weight.
For the past 7 years I'm preferring single mom and have lost nearly 20 lbs since going on the diabetic and RAI diets. :-)
Here's my email address before we get kicked off the forum: ***@**** Email me when you get a chance and your brain fog lifts. :-)
I rescheduled with the endo (Dec 19)but I'm going to start making phone calls to the places you gave me & finally make the insurance plan choice today. I've been taking 1/2 a pill a day otherwise I will get all the symptoms of pain again. I have a feeling I'm hyper instead of hypo or both, can that happen? If I'm hyper would the dosage need to be reduced?
You sure know how to make me laugh! At my 7 yr old's conference I was so out of it. I kept taking the papers she gave me to sighn putting them in my folder. Somehow I thought they were all for me (not). Before leaving that's when she knew I wasn't all there. My little girl had taken off her sweater (hot pink) I took it from her & started putting it on my son! He backed away realizing what I was doing & started giggling! His teacher looked at me a little confused then smiled & told my son as we left "Goodbye! don't be wearing your sister's clothes! He went on laughing and kept reminding me about it.
I'm sure you must be going through a rough time with the "blank mind" since you are off medication (hang in there!). I was reading that your son is thin & he still got diabetes? That tells us a lot, it doesn't matter what our weight/age is we can still get sick. I wish him the best & you also!
As a little girl I was chuncky. I was quiet & nervous up to my teen yrs. I enjoyed school until 3rd grade. In 4th I somehow started going through self-esteem issues not too bad until middle school. My teacher made things worse he was too strict sometimes. He slammed his hand in front of me (yelled at me) at the reading table, I forgot my book (I cried). In 5th my attendance was becoming a problem. I didn't like being in school anymore. My teacher was nice but scary to me
cause he was so tall. He tried keeping me focused in school even picked me up at home for a field trip to Seattle. I finally gave up in 7th my self-esteem issues became terrible. I didn't like wearing shorts (skinny 96lbs) or taking showers for P.E.(not normal to me) sneeked into the shower for girls who were on their period. When that didn't work started skipping the class then was caught. Later skipping whole days until dropping out. The counsler knew what my problem was but I still had to go by the rules.
I was always told how skinny I was even now that I'm married. I leveld out to 100lbs once married. After having my last child stayed at 103-105 (now 116). I'm going to be honest I really don't like being in big crowds. I get nervous (sweaty hands since a teen) & feel anxious. Don't know how I ended up married I didn't want to (trust issue). My husband really understood me he was patient & loving. Even though like other marriages we've had our ups & downs he still tells me he loves me & how beautiful (not) he thinks I am. I'm not the same anymore I get irritated, stressed, worried easy. I wish I could be the way I was before (not the physical, ok maybe the tiny waist:)
I didn't care for B4:(
I think I said too much sorry I don't know what happened. I think I'm posting too much (hope I don't get kicked out). You continue to stay positive for yourself & son. He will really need you through this.
I'm so glad that your husband's insurance will cover you! Any new developments in finding a good doctor or what is going on with your thyroid?
I understand about the "blank minded" feeling. I feel like a complete idiot since I've been of the synthroid for three weeks now (not that I didn't before but this is MUCH worse). I had an appointment with a neurologist today - my entire body decided to fall apart when I turned 40 - and kept referring to my left arm as my right arm. I had her so confused and I'm sure she thinks I'm just some whack-job idiot.
RAI is still scheduled for next week but my blood work on Monday the 13th will tell for sure. It's pretty sad when you have to hope and pray your TSH will be above 30. :-)
My son will be evaluated by a pediatric endocronologist on the 20th to determine if it is Type I or Type II diabetes. He's also showing signs of depression which I've read is pretty common with diabetes. Poor guy.
I'm getting used to the diet. In fact I think I'm turning into some type of squirrel. Unsalted nuts, raw fruits and vegetables - wahoo. The highlight of my day is 6oz of fresh chicken or beef with nothing added. Pretty bad when you dream of seafood and butter on your vegetables.
I have read through your story, and unfortunately I went through the same process with annoying doctors who don't know what they are doing. I went for over a year with a swollen throat (feeling like a lump) to the point that if I didn't hold my head at a certain angle when I swalled, the food/drink would come out of my nose. I also had the same burning feeling in my ears. I was checked for ear infections and tonsilitis countless times over the last year. My tonsils were a little swollen, but not that bad. The swelling was not visable when looking at my throat and you couldn't feel it from the outside. So I had a scan done on my thyroid, and they found 3 nodules, but the Dr. said they weren't big enough to cause the swallowing problems I was complaining of. I have found that many Dr's who can't figure out a diagnosis will often resort to the classic, "mental disorder" diagnosis. Yeah, I was told that I was having a year long panic attack. When my breathing started becoming slightly labored I made another appointment and went ballistic on my Dr. She finally sent me to an ENT for further evaluation. It took him 30sec. and a long mirror to finally give me the correct diagnosis. He stuck that thing down my throat (it wasn't too pleasant!), then asked me if I had Acid Reflux or heartburn symptoms. "No, I have never taken a tums in my life! I don't have acid reflux." He said, "You do now!" Come to find out it was all caused from something called "Laryngopharyngeal Reflux". I left the office with a prescription for nexium and the feeling that I had been screwed over by another Dr. I did some research on it, and he was right- I have all of the classic symptoms! Most people with this disease don't have heartburn b/c the acid comes up so quickly, then spills over into your larynx where it just sits there and tears it up. It isn't in the esophogus long enough to cause heartburn. I just started the nexium, and the Dr. said that w/ the amount of damage I have it would probably take a few months for the swelling to go down.
You might want to do a little research on laryngopharyngeal reflux. I know it was already confirmed that you have a goiter- but it never hurts to look at other possibilities!
Thank you so much for sharing your story. I'm sorry you had to go through Dr's like that. It does help to know the experiences of other members. I had heartburn in the last month of when I was pregnant of my last 2 children. Some heartburn in the last yr but not bad. I never thought much of it since my husband had it also. He had it quite often & was given medication for it. Now it's better. Thank's again for your advice. I will look into it. I do want to see an ENT because of my ear problems. My husband's insurance will start until Dec 1st. I'm going to try & take control of my health. I'm also going to look for a new physician. I hope the medication helps you.
I was reading all these stories. I wanted to add mine. I have been sick since 10/07 with what I thought was a common cold. I came home from a camping trip and had a rough caugh. The family Dr. I was seeing tried treating the caugh. Later still having a caugh they said I had yeast infection in my lungs. So they treated the yeast. And still had caugh. They have checked my lungs. Then say I may be having acid reflux. After several tests, I am still caughing, and they say I dont have acid reflux. Here it is 5/08 still caughing. They are now saying I may have cancer or the whooping caugh disease. They have taken another blood test, and started checking my organs.
Well now I am having a burning sensation under my right ear on my neck. I was just wondering if anyone had any idea of what this could be. Another test will just make me sick.... Thank you!!! God Bless!!!!
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