Need advice on coping

[munbeam]

Hello All,
Here is my story, Dec 2006 I got sick, thought it was a cold, finally by Feb 2007 I was on my rescue inhailers and nebulizer to get through the day. I have Reactive Airway Disease but hadn't had any symptoms in about 2 years prior to this. I finally went to the doctor, thinking I had a respitory problem.

I was also suffering from chronic fatique and weight gain of over 20 pounds and I don't normally gain weight. The doctor found that I had a goiter and sent me to a number of doctors from there. For 8 months I was like this, then one day I woke up and everything was back to normal , I felt great. Within a week I dropped the 20 pounds, my energy was even better than before, no headaches, weird rashes, aches or pains. Doctor said it most have been a Thyroiditist attack. Oh, meanwhile I had a throat swallow test, good.

A number of blood draws for T3 and T4, just within normal standards and a biopsy of my nodules, all negative. Then in Feb 2008 it started all over again. Within days I had ballooned up 15 pounds, my hair started to fall out, headaches were back, as were the aches and pains. It took everything I had to get out of bed in the morning. Now I had heart palpatations and tremors at night. It lasted 3-4 months and I saw a number of doctors that stated that my T's were normal so it wasn't related to my thyroid.

Then again same thing, I woke up one morning and felt great, but this time I was now jittery and I couldn't sleep at night but only a few hours, the heart palpitations continued and I was still having tremors at night though. I have been like this since, back and forth. I may have a down time from 2 weeks to months and then just the opposite will happen. Oh, I also went from a consistand low blood pressure of 98/52 to into the 140-180 over 100 range. I have a history of thyroid disorders in my family along with fibromyalagia, both sides. I have to keep two sizes of clothes cause I never know what I am going to weigh at any given moment. I bounce between 126 and 148.

I eat organically with most food grown on my property. I am very active and work out 4 times a week. I am leaving out a lot of information but what gets me is I saw a new Endocrinologist today and he told me that since my T3 is normal it's not related to my thyroid and it was all in my head and I was bipolar. HELP!

[Ginny]

Hi munbeam, and welcome to the forum.I am sorry but Ihave to go out right now, but will get back to you later today.
Have a good look around the forum in the meantime, there is plenty to read.

Ginny

[Ginny]

Hello again Munbeam, sorry for the hurried exit earlier.

Well I do find your swings a bit puzzling, on the face of it, it seems you probably have autoimmune
thyroditis which does cause swings between hypO and hypER (Hashimotos Thyroditis - have you had your
antibodies tested by the way?) These swings are not unusual, but they do not usually happen overnight.

I presume the doctors your GP sent you to were endocrinologists, the thyroid is part of the endocrine
system, but unfortunately most endo's are diabetes specialists and do not specialise in Thyroid Disease,
but it does seem that they were not up to filling you in with much detail about what was going on. You
are entitled to have a print out of your blood test results together with the referece ranges of your lab,
it is your blood, your results and you are entitled to have them from your doctor and endo. Try ringing
their secretaries to see if they will print out all your thyroid test results for you to collect, and someone could try to interpret them for you if you want to post them on here.

How do your other family members with thyroid disease cope, are they fine on their medication or do they
still have symptoms? You do not say what dose of Levothyroxine you have been on, has it been adjusted
up and down to suit your blood tests or has it been fairly stable? Have you had any tests for low adrenals?

It is a very good idea to keep a Thyroid Diary. listing what level of meds you are on, how you feel on that
perticular dose, and what your blood test results are on that dose, this enables you to see if there is any sort of pattern forming with your swings.

I hope this has been of help to you.

Ginny

[munbeam]

Ginny,

Let me start by saying my teenager broke my "t" button on my laptop so I have to paste each time I use the letter, so no uppercase. New keyboard on order.

I will get all my test results on Monday, thanks. I am not on any medications. My GP says I have what looks and sounds like Hashimoto and has mentioned thyroiditis attacks, yet when I have seen the endos over these last few years, they say my t3/t4 are within range so nothing is wrong. this last Endo said thyroiditist is what doctors make up when they don't know what it is but feel the need to name it something, like the term "virus" is used. He went on to say I was his 3nd patient that day who probably just looked up a bunch of stuff on the Internet, didn't understand it and said "that's what I have" and ran to see him. He went on to say I was jittery and my problem was psychological and that I was bipolar. He neglected to find out that I didn't go to sleep until 3am, my husband was out of town all week and I left my 16 year old in charge of the other kids ages 7, 6, and two 5's at home while I went to my appointment. She had also called and texted me 3 times while in the waiting room, oh, and I stopped and bought a large coffee for my 1 hour drive to the office because I was a bit tired and I don't usually drink any caffeine because of my migraines. Did I mention the doctor was running 45 minutes behind and I only say him under 15 minutes.

Both sides of my family have thyroid problems; paternal grandmother had multi-nodule goiter which was cancerous and was removed, both aunts have hypothyroidism, they are all on meds and now my younger half sister has a goiter which was found just recently. My maternal grandmother had hyperthyroidism and two aunts have hypothyroidism with one having a huge teratoma which resulted in a hysterectomy, all on meds, my mother had a tumor in her uterus and had her hysterectomy at age 27 she also has fibromyalgia and RA (diagnosed 1 year age), she's on 9 different meds. My maternal younger half sister also had fibromyalgia (diagnosed almost 4 years ago) and was just told her thyroid was enlarged by her Rheumatolgist and is being monitored.

I have always been very active, into all kinds of sport, extreme sports included. I have traveled extensively to include North America, Azores, Europe, Africa and a number of islands in the Caribbean. I always lived by the motto "try anything once, twice if you liked it". Due to my "exciting" and unusual life I have had broken bones, torn muscles, diagnosed and treated for Lyme Disease when it was barely understood (1990), exposed to all kinds of chemicals (military), I even lost part of my intestine and appendix due to a severe Mesenteric infection. Few other weird things too, like reactions to meds, shots, iodine, and foods, crazy illnesses. I also have a Cavernous Hermangioma that is inoperable due to it's location smack dab up against my left ventrical, diagnosed at Johns Hopkins in 1998, which is why I changed my lifestyle, lol. Now I live a natural and organic lifestyle with my husband and raising 5 kids. I still ski regularly, hike and so forth but no more things that cause pressure in my head.

I am on Neurontin, prescribed by my Neurologist to control tingling on my left side and tremors at night but that is it. I just want a doctor to look at my medical history, all of it, take into account my background, past medical record with low blood pressure, body temp, and low "good" cholesterol though I eat great, my rare blood type and realize what is within "normal" range for one may not be "normal" for me. I don't necessarily need a medication but just to know what is wrong and tell me how to manage it better. Heck, I am my Cerebralvascular Neurologist's only patient that is managing without meds anymore.

[Ginny]

Your endo sounds like a typical toe-the-liner who judges by blood results alone and does not even look at
the patient, you should ditch him. You doctor seems to be a bit more thinking and helpful.
I really hope when you get your results through they will include an antibody test, this is likely to be positive and if so will confirm that you have Hashimotos, which is the autoimmune type of hypothyroidism, the most common. The antibodies will be attacking the thyroid and will eventually destroy it, perhaps over many years, and you should ask to be given Levothyroxine to replace the hormones which your thyroid is unable
to produce. The fact that so many members of your immediate family have thyroid problems strengthens
this argument, so please make sure your doctor is aware of this.

I do not know of or understand about the other medical problems which you have, but one thing does stand out to me; when you say you have had part of your intestine removed , this may lead to a deficiency of Vitamin B12, as this vitamin is absorbed in the intestine. A shortage of this vitamin can lead to symptoms
closely resembling those of hypothyroidism, and would aggravate how poorly you feel. Do please ask for a test for Vitamin B12, ferritin and folate levels to eliminate this possibility. The B12 levels need to be not
just "within range" but for optimal well-being should be between 500-1000 ng/L.

When you get your results, if you want to post them on here we will try to help you understand them. Are
you in the US ?


Ginny

[munbeam]

Endo just called and stated my numbers have continued to rise since 2007, now that he got results from my latest test and everything from last Endo's office. He didn't say which numbers, only they were on highest of normal range. He is scheduling me for a radioactive iodine uptake test. He also said my nodule on one side has grown since my 2008 scan. On 2008 scan I had 6 nodules biopsied, but he only saw 2 large ones on thursday. He said something about autonomous issues???? I will be picking up all my results when I go to Hopkins for my pill. We also talked about our appointment and he did everything to reassure me he meant no offense and all but said the actual words "I'm sorry."

[munbeam]

I will post results when I get them. I will also look into the vitamin issue and yes, I live in US, on East Coast. thanks again for all your info, Ginny.