To make a long thyroid-story short, I have had something akin to DYSAUTONOMIA (malfunction of the autonomic nervous system) for over 20 years, brought about when I exercised. Occurred before I was put on Synthroid in '81, and continued afterwards, even when my TSH was down to 2. Did not associate with my hypo.
If I did practically nothing, I was fine. But if I participated in ANY kind of strenuous, OR, long lasting exercise, I would get extreme progressive fatigue after exercise, pounding heartrate, sweatiness. Fatigue so profound with a high heartrate that I would wake up the next morning profoundly exhausted. Fatigue so profound that I would not recover for days. Sunlight made it worse. These post-exercise symptoms caused me to lose my job as a fitness specialist, and caused many episodes of over-doing it, and the consequences, for nearly 20 years. It got so bad this year that even sanding on a project brought on the same symptoms, which I finally identified as Dysautonomia.
But guess what?? When I switched to Natural Thyroid Hormones (Armour), every bit of the Exercise-induced Dysautonomia went away!!!!! I am more normal now than I have been for nearly 20 years. I am living proof that taking synthetics, and expecting that the conversion of T4 to T3 is adequate for complete thyroid treatment, is simply not adequate.
Well here's what I know about my story so far. Last year at my physical my dr. said my TSH levels were off and sent me to a specialist. He put me on Tapazole which I had a reaction to and stopped taking. When I went back to see him he asked me if I was taking estrogen (which I was and which was in my medical history). He said he needed to do different tests. He did them and the results came back OK. I stopped going to him and, of course, he told me if I had any problems come back in.
Fast forward to this year's physical. My TSH levels were really off this time. Looking back I realize I was having symptoms - I just didn't put them back with my thyroid. Now I have an appointment with a different specialist but not until the end of Janaury. Last year when I had the reaction to the Tapazole the dr. told me there was no medication I could take and the next step would be the radiation ( is that RAI?) I'm not sure I want to do that but I really don't have very much information about anything at this time so I guess I won't be able to say until I have my dr. appointment in Janauary.
I haven't had time to read all the stories and posts but this looks like a place with lots of information. Thank you all for posting your stories.
[This message has been edited by Mat54 (edited 11-12-2002).]
First, I want to thank those who take the time to post to this site as it has given me a bit of guidance through what has turned out to be my own person 9-11.
Over the last 3 months I have been given a “crash course” in thyroid disease. On Sept 18 I had a total thyroidectomy. No one “found” the mass on my thyroid. I thought I had enlarged lymph nodes directly under my chin. Three doctors told me they were lymph nodes, but that they were not enlarged. One finally referred me for a scan (to placate me I think). The “nodes” were fine (turns out my ENT said they were actually saliva glands), but a 2.5 cm mass was found on my thyroid. I can still hear my doctor telling me about this “small, benign mass” that may be causing my lymph nodes to swell. It sounded so harmless.
A FNA was inconclusive, but suggested Hasimoto’s and possible papillary carcinoma. I went into surgery not knowing what they would find. The preliminary pathology during surgery was also inconclusive, so they removed the whole thyroid. Two days later my endocrinologist told my husband and I that it was indeed Hasimoto’s and papillary cancer. The cancer was a 1.7 cm nodule INSIDE the 2.5 cm benign mass. The FNA could have missed this and come back and benign when in fact it was not. I am very please with the doc who performed the FNA as he clearly “felt” the texture and quality of the mass were suspicious. He was right on the money!
Naturally, I feel my whole world has been turned upside down. I read The Thyroid Solution and have been backtracking in my mind to figure out what has been going on with me. My docs have all said none of this has actually affected how I feel, as my TSH shows a “healthy” 2.4 level. I know better.
For 5 years I have felt wrong. I have felt that I have been aging at an abnormal rate. I have struggled with adult acne – the thing that has actually kept me going back to doctor after doctor. I have had occasional hair loss, which was troubling. I have been tired, depressed, occasionally even thinking I would just rather not be alive. I have lost interest in many activities and found myself unable to keep up an exercise routine that I was able to do easily before. Sometimes holding up my blow dryer caused my arm to ache. While I would never have thought of myself as having trouble thinking, I would say I have avoided tasks which require a lot of sustained concentration – even simple ones like card or board games with my kids.
I can keep up a busy schedule only by very carefully planning times of rest and inactivity. One day I may be on the go all day, but the next I feel exhausted and can’t keep up. To make the whole picture more obscure, I am a petite person – normally 5’3” and about 95-100 lbs, but have lost about 10 lbs over the last year. I even had them check my thyroid about a year ago, thinking that it may be off. My TSH at that time was about 1.7. They never even suspected anything was wrong with this miserable and very diseased organ.
Currently I am waiting on my scan, following RAI. Now that I know exactly what it feels like to be hypothyroid (TSH 75), I don’t need lab work to confirm that I have experienced this in varying degrees for a long, long time. It is as if my body would shift the problem from one organ system to another in order to cope with the deficiency. That explains why I would only experience the symptoms for a while, and then it would change to something seemingly unrelated. You can look back and see it peppered through my medical records – patient frustrate, tired, “doesn’t feel well,” very thin-consider TSH sensitivity (never happened), skin changes, hair loss. Since I rarely saw the same doctor for long (military), they never put it together. Heck, these guys never even read the medical record. Neither did I though.
It is always good to find a missing piece to a puzzle. I continue to hope and pray this process, although slow, will lead me to a place of better health. I pass this same hope on to all of you.
The following user gives a hug of support to ringbearer: tookie83 (09-15-2011)
The Following User Says Thank You to ringbearer For This Useful Post: PenneyLoafer (02-18-2011)
Thank you tree-frog for pointing me to this thread. I feel relieved and empowered now to ensure I get answers from my doc, whatever is going on. I felt your story could be my own, particularly the symptoms. I feel mostly relief that I don't think I am going crazy and there is possibly a solution to all this. I have also posted some positive things at the end of my thread about how I coped emotionally with IBS and how that mindset is starting to come back in dealing with these problems.
My story is that I'm 29 and have been having the symptoms for hypo for at least 6 months badly, and mildly for the 6 months before that. I used to swim 40 laps a day at 22 and more recently a member of a gym. But in the down times I was always slimmish and didn't have to worry about weight. In the past year I've gained two dress sizes for nothing and have no energy to do basic exercise, and I've found this really depressing. I never worried about my weight in the past, never weighed myself and don't intend to start now, but I am sad about no energy and wondering if it will be difficult to keep in shape.
I also have found it bad in having to turn down invitations to go places as I've just been exhausted and sometimes needed to sleep one or two days on the weekends. I felt people thought I was hypochondriac and that has been bad too. They ask how you are and you dn't want to say "I still feel like ****" so you have to pretend you're OK. I have hated that.
In the past 6 weeks I have had a non-stop sore throat, headaches, sinus problems, muscle spasms and it just won't stop. I have been tired and sleepy. I had tingling in extremities for about 4 months non stop, although it wasn't painful, it was frightening.
I've been tested for every STD under the sun just in case as I never was in the past. All negative. Checked for MS with specialists. Checked for diabetes and iron etc, and apparently all normal. So tomorrow when I go to the docs I will request thyroid tests and won't leave until I get the referral. I have just had it and I can't function properly anymore. I even sleep in the office as I'm alone most of the time.
I am a linguist by trade and work in a fairly high level and demanding role, yet I find myself uninterested and unable to focus, recall and concentrate like I used to.
On a positive note, I'll tell this story. When I was 22 I was diagnosed with IBS (irritable bowel) which I thought was the end of the world and I became quite depressed over that. You basically have no control over whether you'll have Diahhroea (D) or Constipation (C), and when it occurs. It was scary as I have jobs where I travel, my schedule was erratic, I have to be in meetings adn can't run out to go to the toilet. I was very upset for yeatrs and every single time I had a meeting I prayed it would be all ok. It's very stressful.
However, with time and patience I discovered which foods triggered D and cut them out. I read and read about nutrition and good health. I had to change my lifestyle a lot, and I still believe that whatever meds we're on, we must give our body the best chance it can have by being healthy. I learnt that some form of meditation is probably one of the best treatments for any kind of stress or anxiety on the body. I strongly urge everyone with thyroid problems to meditate and learn to focus for a short time everyday or as often as possible. I just started doing this again the past 2 weeks after leaving it off for about a year (I got lax as I had the IBS under control and was crusing a bit). It helps emotionally and psychologically to provide balance and focus. It slows you down and forces you to focus on your body and what is going on. Soft yoga is excellent for this. I found that my body funcitoned much better and I was emotionally calmer. Calm is the key to treating many problems. After giving my body the best shot at doing what it could, I managed to be able to go to meetings and not stress out and have to go to the loo. Part of it was psychological and in the sub conscious and I found that even though I felt fine, because I KNEW I had to go to a meeting something happened and it would upset me and despite my best conscious efforts, my bowels fell apart. I did some hypnotherapy with tapes and this was where I started meditatiing, in addition to yoga, They were specifically for IBS, but helped emotionally and psychologically very much. Finally, I discovered a tablet called Imodium that will stop everything for a day and if I'm travelling it's my safety guard and I feel very comfortable and confident now that no matter what I should be OK for work. I would still be nervous if I didn't have the fall back but overall I was doing much better.
And then all these symptoms started happening and I had no idea what to think. I thought IBS was bad, but I will never feel sorry for myself as it can always be worse. So after relaxing a little about the IBS about 2 years ago, I didn't stick to the exercise and yoga as much as I used to. But I just started to remember the positive benefits I felt before and trying it these two weeks has given me some sanity back again. I have also promiosed myself to do the best things for my body again, eat well, and boost my immune system. I have cut out most alcohol again and virtually stopped drinking caffeine and stopped eating sweets. Everything we eat has the potential to boost our health or put pressure on the body in negative ways (immune system inhibitors like alcolhol, tobaco and caffeine) so that it can't focus on doing what it's supposed to for good health. I now think of food as a source of existence which gives my body a fighting chance at making itself healthy. I am going to again focus on making my health and body a priority and make more changes to my lifestyle to ensure I get the time I need and do less of the things that don't help.
I feel the most beneficial thing is change in thinking and slowing down, as an earlier poster mentioned. It seems that the meditation, yoga (even journal writing every day at a set time) helps focus and create positivity from which all the other positive changes stem. i have had feelingss of being overwhelmed and jhopeless for some months due to these symptoms, but I found that the small steps turn my attitude around and make me feel like I can cope again, and not to give up.
I hope this makes sense and helps some others too.
Hello. Like Tree Frog, I had symptoms all over the place that became so bad over the years that I was frequently incapacitated and almost took disability! Can't begin to count the times I was absolutely miserable and had to pace myself.
But believe it or not, this all occured WHILE I was being treated for hypo!! I was diagnosed around 1985 with so-called borderline hypo with a TSH of around 6.2. I was put on Synthroid and my TSH went down to a nice low number. But for 17 years, I continued to have those same symptoms. They were so bizarre and debilitating that by late 2001, I was sure I had a muscle disease and was just about to take disability. I had even joined groups on the internet with others who had the same muscle diseases and symptoms.
(For 17 years, no one suggested that the T4-only meds I was taking might be very inadequate for my hypothyroidism. My symptoms couldn't possibly be related to a "treated" condition!!)
But in June of 2002, I suddenly had a bad reaction to the Levoxyl I was taking. The T4 was not converting, and I felt a constant buzz sensation, and achiness. Lucky for me, it got the ball rolling. I did some major research, joined a Shoman email group, and made a switch to Armour, a natural thyroid hormone.
Amazingly, all my bizarre symptoms stopped. I learned that all that time, my fT3 was never in an optimal range. Synthroid and/or ANY synthetic alone was not doing what my body needed. Natural thyroid, on the other hand, gave me the extra T3 I think I badly needed all those years. Cytomel (synthetic T3) might have helped, but I have sure appreciated all I know now about naturals.
Some people appear to do fine on Synthetics. I even have family members who are on it, and seem fine as far as energy. But one relative has extremely high cholesterol and tri's--a symptom of hypo. So I do wonder.....
But some of us certainly have not done well on T4-only. I've begun a new life, in a way, since I switched.
hi my name ir robin iam 25 yearsold with 3 boys 7,3,2 i lived in ohio and i took my son to his doctors appt i was sitting nexted to the doctor and she scared me cause she looked at my neck and said you should get your neck checked (it was werid) but i just looked past it that was like 1or 2 years ago . now i live in az i really didnt see a change in me tell like maybe 6 months maybe longer i have a big lump in my throat i dont want to drink anything one day i think i had one can of soda its hard to swallow at times im ready to lose the best man that has walked into mine and my kids life cause i act like a freak i cant believe the rages i get i get so violent i went to jail cause i hit my boyfriend now going to court for domestic violince(which is bull crap) but i cry all the time when i eat i have to stop even though i still feel hungry i feel like i could throw up. no one wants to be around me am such a ?itch to be around . no one can say anything without me blowing up , but tommorw i go for a scan and ultra sound so everyone wish me luck i read all of the stories and just wanted to cry good luck to you all . robin
__________________
robin rogers
The following user gives a hug of support to robin25: tookie83 (09-15-2011)
Hello,
It's taken me awhile to write my story.I am a 39 year old Female. I have been coming to this wonderful board for awhile.. My story begins a couple years ago when I just felt real sick, I had acid reflex for year and gained weight and just felt bad all the time.. My Dr. really had no answers for me. Then the first of this year I felt like I was unable to live life like I have been I was so sick, and went into the Dr. My Dr. found 2 breast lumps and I was told they needed to come out,4 days after the lumps were found, I found a lump on my right side of my Thyroid. My first thought was WHY God ? I had really chaged my life around and had a Wonderful Birth daughter that was in an auto accident when she was 10 (now 24) That is TBI. We have adopted 6 of Gods angels and our life was going so well . In April I had the surgery for my breast lumps and Thank our awesome God there was no cancer Well to get back to the Thyroid a FNA was done it came back not 100% for cancer so surgery was in May 2002 and cancer was found. WOW what a huge blow, My thought was how can my husband & children live without me this isn't fair. Then I found this board ( I know God brought me here) This board is so Awesome ,I met so many wonderful people on here But one stands out the most and that is ArtfulD. She has been at my side through all of this and is my piller that God sent my way ( Thank You ArtfulD) I went through the RAI in June and was put on Synthroid I am still not on the right dose but we are getting there. I have good days and bad. I just Thank God for such a good out come, Things could of been so much worse.. God Bless you all , Marcia ( also known as stardust39)
[This message has been edited by marsv63 (edited 12-30-2002).]
[This message has been edited by marsv63 (edited 07-19-2003).]
Hi everyone,
I didn't know that I should post my story here, so will do so now.
I am a 46 year old female that has Hashimotos for over 5 years.
I was diagnosed after a long time suffering from thyroid symptoms. I thought I was going crazy at first because my depression and mood swings were driving me and my family crazy. I was started on a very low dose of Synthyroid and was upped at least 3 times. I have continued with all the symptoms of Hashimotos and went to the doctor the first of this month. He and I agreed to switch to Thyrolar. I have been on it for 3 weeks and waiting for results. I also take Wellbutrin twice a day because the depression has never left.
I am so happy to have found this board because I can discuss these things with people who understand and don't think I'm nuts.
God Bless you all!
Bellajoon
When I was in my early 20's I lost almost 50 pounds; my diet included a soy protein shake every morning for over 6 months. Later that year, I went hypo, but didn't make the connection until this week, while researching soy and its thyroid connection. I was put on Synthroid by my father's elderly and out-of-it doctor; the dosage was too high, he wouldn't lower it, so I went off of it after a couple of months. I didn't hear from my thyroid again for a long time, but did from time to time have palpitations, which were always checked out with EKGs and were normal. Now I suspect my thyroid was calling out to me, but the odd test came back within normal ranges.
Flash forward to today - 44 years old. In the meantime, I developed asthma, which has caused me some minor problems over the years.
Almost a year ago, my gynecologist discovered an enlargement of the left side of my thyroid, He suggested blood tests and an ultrasound. Unfortunately, I lost work after 9/11 and my insurance, so I could not afford any testing, and I had no symptoms, so I did nothing.
As soon as it started to get warm in April, the symptoms kicked in. The most alarming ones were the sudden, rapid heartbeat and heat intolerance. I began to panic when this happened, and to panic that it would. Thinking that it was asthma, I over-medicated myself with my inhalers and drugs, making it worse. I was working by now and made trips to the ER for unspecified symptoms ranging from painful, sudden UTIs to palpitations. I endured a very hot and uncomfortable summer, made worse by suddenly very heavy menstrual bleeding and periods that never seemed to end. I had 5 UTIs last year. I made it through mid-October, and then had to stop working. Failing to get any health insurance through work, I was able to have some blood tests done at an arts organization; the tests indicated that I was mildly hyperthyroid with elevated T3, and anemic from my heavy periods. I finally bought some insurance and was able to see a doctor in November, eight months afterthe first symptom appeared. By this time, I was in a highly emotional state. I met my new doctors in panic mode and never got off on the right foot with my PCP, who has no time for me, so I have to find a new one. I became a professional patient and was diagnosed with Plummer's syndrome - a toxic hot nodule that had taken over thyroid hormone production. I had all of the blood tests, a sonogram and an uptake scan, but no FNA.
I abandoned my first endo, who was a relentless promoter of nuclear medicine. I lost faith in my second endo, who seemed too timid and disorganized. They offered as solutions RAI or surgery. I did my homework. I did not want to go on Tap or PTU for an extended period, and definitely didn't want RAI, so I chose surgery as it seemed like the fastest way to feel better. I found a wonderful surgeon, and on December 13, had the left lobe removed. There was no cancer found. It went very well and I don't regret it. I'm trying to build up my system with vitamins and supplements, rest, and mind-body work.
Before my surgery, I was put on a calcium channel-blocker to lower my heart rate, and Klonopin for my anxiety, which I still take when I need it. The anxiety is still with me, but my heart rate is down. I was on Tapazole for two weeks before the surgery but felt ill from it, so I am glad that I did not choose anti-thyroid drugs, which no one felt were appropriate for my nodule anyway.
I saw a third endo last Thursday for my first post-surgery thyroid function test. I am in limbo for a little while longer, but I feel much better, only tired. I sometimes feel a little hypo, sometimes normal, and in the past few days, slighly hyper again. Have not yet started to exercise, but I walk. Not back to work yet.
I had a very emotional and stressful year due to work situation, finances, and relationship trauma. It was the latter, I think, that really kick-started my symptoms. I have an ovarian dermoid cyst and some recently discovered fibroids that explain the heavy bleeding, so I have to deal with these problems next. The gyno did not want to deal with anything until I recovered from the surgery. My period came early a week after my surgery, and it was not as heavy, so perhaps the surgery has had some positive effect on the fibroids.
It feels as if it has been a very long time on this road, but after reading these moving stories, I see that I have not been suffering nearly as much as many on this board. I am so angry to read about the low level of care that so many have received! I feel as if I want to change careers and become a thyroid patient advocate!
Sorry for the length of this post. I hope it helps someone. I wish everyone a healthier and happier 2003.....
Bluecab
[This message has been edited by bluecab (edited 01-07-2003).]
Hi - I'm posting an update on my situation. It's now seven weeks since my surgery. My doctors assured me that I should be "normal" afterward and up and about and back to my schedule in two weeks.
(Maniacal laughter followed by heavy snorting)
I was exhausted from being hyper and still have not recovered my mojo, and am not back at work yet tho I will have to be, $oon. I am terribly out of shape and strenuous activity of any kind sends my heart rate zooming up. I liked it when my bpms were in the high 70s right after surgery but now they hover at 80 while idle and can hit 100, too. I'm not sure why this is happening but it tells me that my levels are still out of whack and that I am under-conditioned after three months spent lying down or sitting on my butt. I have to lose about 40 pounds now but have stayed the same weight as I was (actually lost a few pounds) since just before surgery, when I gained 10 from being on Verapamil, Tapazole and the iodine drops. I only lost 10 pounds while hyper but I was also eating everything in sight.
Three weeks after surgery, my blood tests showed me to be slightly hypo. I insisted on another test a week later as I was feeling crappy; my TSH jumped from 3.75 to 5.89 (it was 0.01 pre-surgery). T4 and T3 in low normal range. I insisted that my endo put me on replacement hormone and I have been on .025 Synthroid for two weeks now. I feel a bit better. As of a week ago, my TSH is back to 3.71. I expect that it will drop some more. I have another appt with the endo next week, and will just have to see what happens.
Endo #3 seems conservative in his approach but I will stick with him a bit longer. I did fire PCP #1 and am on PCP #2 but I am not overjoyed with him, either. I am a much more anxious person since all of this began and I am rather obsessed with the whole illness thing. I really have to watch myself or I will prattle on endlessly to anyone about my health problems (as I am doing now) - something that I once ridiculed in others. Things have certainly come full-circle.
The two things that have saved me are these boards, the one at About and graves-support on yahoo. I don't have graves but they welcomed me and give good advice. The other is seeing a good therapist. Helps keep things in perspective, and she helps to motivate me. My support system is not what it could be, and in times of real distress I have regularly called Samaritans, which I recommend to anyone else who is living alone and dealing with allof this crap without a network of people around. At 3 AM, it's nice to know that there is someone to talk to.
But I do feel a thousand times better than I did at my most hyper. The surgery was the way to go. I had a follow-up with my surgeon yesterday and he was thrilled with how his handiwork, my tiny cut, is healing. I had no reaction to the anesthesia (unless my tiredness 7 weeks after is part of it), no nausea, and no complications of any kind. I take extra iron for my anemia, antioxidants, cal/mag, supplements w/o iodine, black currant oil in the hope that the scars from my scratched-up hives and rashes will go away, Vitamin C - and will probably introduce other supplements as time goes on. I have started eating meat (anemia) and more chicken, grains, beans, veggies, salads, fruits, cut back on dairy and when I do have it, it's organic, as are the meat and chicken and everything else, with a few exceptions. It's not always possible as I have to shop in neighborhoods that I don't live in to achieve this. Bummer.
I'm still on a low-iodine diet but I allow myself organic eggs and the occasional commercially baked muffin or bread (for the iodine!). I have not yet gone back to eating fish and have to solve the omega-oil thing. I so loved shrimp but think that this thyroid thing has ruined my taste for it now, and my beloved take-out Chinese habit is a thing of the past for sure.
Changing my eating habits and eating less generally due to lower appeite (thank you, Mr. Hypo) has also made a world of difference. When I was hyper I went on a low-iodine diet and felt so much better, and I'm continuing it. I stopped all caffeine and alcohol, and most sugar, but allow myself the occasional chocolate or dessert. I try to look at it as a chance to correct a lifetime of poor eating and poor health choices - to get myself back to wellness by treating the whole body. That is the one good thing that I can hold on to here. Now if I could only manage the exercise thing. I started yoga last summer and will try to do a bit of that along with more walking as I ease more activity into my schedule.
Hoping that we all will feel better soon---
Bluecab
2/12/03 - update
I'm finally feeling better! I started adding Selenium to my supplement regimen and felt an immediate improvement to my energy level and mood. I have been on meds for a month now. My T4 to T3 conversion was poor and maybe the selenium has helped. I tried Selenium 200 mcg for 2 days but it was too srong and my hyper symptoms returned. So I am eating 4 Brazil nuts a day and that seems to be a lower dose without giving me the rapid heartrate and jitteriness that I was feeling. Ihope this helps someone else. Just make sure that your T3 is not too high before adding selenium.
[This message has been edited by bluecab (edited 02-12-2003).]
I am new to this forum. I am 24 years old, female and I have been experiencing a lot of the symptoms you all are mentioning, though not so extreme. I was always a small person, around 120 pounds, 5'5. Then I moved to Hawaii and gained about 15-20 pounds that I could not lose for the life of me! I attributed it to the rich food and slow island lifestyle. For over a year, I have been getting cold to the point where I feel my bones are chilled (I live in 80 degree weather, year- round) vertigo, mild depression and panic attacks, lose of direction, memory loss...and the weight gain. I have lost about 10 ounds due to Xenadrine, but now I am gaining it back. I asked for a thyroid test last year, and they said all was well.
[This message has been edited by moderator1 (edited 06-12-2003).]
