Trying to Educate Myself

[Judi2]

Hello and thanks for reading.
I will preface this by saying I know I need more blood work done to test my T3 and T4.  Everything so far is being based solely on TSH of 5.32 and an ER doc. prescribing levothyroxine "because I wanted something done" (it's obv been an interesting road so far)

A bit of history.  11 years ago I was diagnosed with Fibromyalgia, it always felt like a cop out on the doctors part and definitely on my part for not pursuing it.  I went through cycles of antidepressants and painkillers/anti inflammatories when I was initially diagnosed to no avail other than feeling even less like myself.  I hated the effect most things had and more often than not they caused anxiety and/or no positive effects.  After a while I suppose I gave up and stopped going to the doctor.  It was the same thing over and over and over again and quite frankly it ultimately ended with me resigning to the diagnosis of fibro and I would just live with it.  

Live with it I did, constant body pain, constant fatigue, brain fog (the absolute worst symptom in my opinion) that waxed and waned but was ever present.  These were the major things that went on over the 11 years but this year seems to have been the best and worst.  In January I decided to change my lifestyle, eat better, exercise etc.. I had gained a lot of weight being sedentary.  I initially felt better(ish) and lost weight.  Overall I lost 40lbs in 6 months and plateaued at just over 200lbs, I found that I was dangerously playing with my calorie intake to try to get past it and scared the heck out of myself.  Slowly I became more sedentary again, I didn't have the gumption to work through the aches and pains anymore and my lifestyle reverted back again over the summer.  I stayed just above 200lbs for a couple months and over the last two months I've gained just over 10lbs back.

So that brings us to what lead up to now.  Over the past couple of months I have been feeling worse and worse.  At the end of September I got my period as normal.  But I got it again two weeks later.  (I've never had problems with menstruation)  I had noticed leading up to now I've been having major mood swings around my period also, which isn't normal and almost zero libido .  Mid/late October I was feeling the worst i had felt in years and again had my period, third one since Sept. 17th, the brain fog was horrible, headaches, beyond exhausted and omg body pain. I had convinced myself that despite being only 42 it was perimenopause.

Early November my mother was going in for brain surgery and I was feeling horrid, and had added upper abdominal pain and hiccups to the mix so I decided to go to the local ER (we don't have a family doctor) to get checked to see if it was ok to go and see my mother in the hospital.  He did blood tests/urine tests found that I had an elevated WBC.  He put me on antibiotics and an anti inflammatory and gave me the paperwork for an ultrasound and more blood work IF I didn't feel better shortly.  After the cycle of the meds he prescribed the upper abdominal pain was gone but the rest was overwhelming, I was starting my 5th period in 9 weeks.  I went back and saw a different ER doc.  He decided to send me for abdominal and pelvic ultrasounds and test my TSH among other things.  I got the tests done and headed back to ER again.  

ANOTHER different doctor looked at the results, he had MOST of them in front of him (he was missing the bloodwork).  
He told me that I have uterine fibroids and only after prompting agreed to refer me to an obgyn.  He also went on to tell me that he would bet me that he could go out in the hallway and ask ANYONE and they will have the same symptoms as I do, tired, sore, brain weary etc ... and that in his opinion I should just try to be happy and exercise more ???? (boy do I wish my brain worked faster because he would have gotten an earful) I continued to question about the bloodwork .. which he still didn't have in his hand .. and he made a point of telling me that he had already spent more time with me than he normally would ANY ER patient .. like I should have appreciated that and just went on my "try to be happy way" .  

Eventually he went and found the blood work.  His very words were, there is something here that I have no clue how to interpret because the normal ranges have recently changed.  My TSH was 5.32 and the range for the lab is up to 5 is normal.  So "because I've requested something be done" he put me on 100mcg of levothyroxine and told me to come back or find a doctor and see them in 3 months.  I asked about an endocrinologist since there were no avail. family docs and he laughed at me, said the doctor would laugh at him for doing it.  With that we DID go on our happy way.

I came home and started researching immediately.  I started the Levothyroxine three days ago and I'm currently looking for a doctor who will take me (there are none in our rural area) but in the meantime I'm quite frankly a little worried.  What if it isn't my thyroid .. obv no real way of knowing unless I get the T3/T4 tested which I'm debating on going back to the ER AGAIN to request it be done but a little reticent to do that after the last experience.  

So lets look at this in another way, IF I'm not hypothyroid is the levo going to hurt me?  Are there any side effects that will tell me I'm taking it without need?  How long should it take to see any effect of the meds?

I've only been on them for 3 days now, no change physically except some marginal worsening of body aches/muscle pain and added pain in my back muscles, brain wise, I am having a time of being clear, actually feel more clear than I have in a long long time but am hesitant to attribute it to the meds.  I'm not noticing any hyperthyroid symptoms at all .. yet ...

Thanks again for reading, I know there is a lot missing still but hoping to not go totally mental worrying between now and when I can get the rest of the tests done.

[Barb135]

I'm so glad you are actively seeking a GP; I didn't realize that Canada has such a shortage of doctors.  I've heard from people, even here in the US, who have traveled 100 miles or more to get a good thyroid doctor.  Sometimes, that's what it takes.  

Maybe it's time to make the rounds of the doctors, whose waiting lists you are currently on - any chance they passed over you?  Remember, the squeaky wheel gets the grease!!  LOL

When looking for a doctor, if possible, try to find out prior to making an appt, how they might treat thyroid issues, what tests they routinely run, etc.  Hate to you see you go through the hassle of finding a doc, only to realize that s/he still won't give you the proper treatment.

Best of luck and please do stay around and let us know how you are doing.  

[Judi2]

Thanks everyone for your responses.  
When I was ranting in my original post I missed saying that I'm very actively seeking a GP that is taking patients in our area and now looking beyond our area.  We are in a rural area (in Canada) and have been on waiting lists for a GP for a long time, there is a serious lack of doctors here.  The reason I've dealt with ER for this so far is because it's been my only option.  From my research so far I realize that what everyone is saying is crucial ... I HAVE to find a doctor ASAP.

[stella5349]

I'm not sure why you chose to only go with ER care but the future for you certainly could be better.

On the history of you, exhibit all classical signs of having a thyroid condition but you probably fell in the norm of not getting adequent care or knowledgable medical advice on how to correct the issue.

Fibro is one of the major issues of this condition and more often than not - this is the only thing done - and told - to the patient so the doctor doesn't have to look at further on how to fix it. Just live with it - is told too many times.

Mentraul cycle changes are also a biggy.

Barb listed good labs - Get them done.

My advice for you would be to find the right doctor intune with hormone issues. Someone possible in intregrative medicine could help you more than an endo. Research doctor in your area that have more of a mind set on the whole body and not someone claiming they are a specialist.

[jtlmom1577]

Barb135 is right on....

My recommendation though is to cut the 100 mcg in half and find a general practitioner in meantime.  100 mcg is too high to start with thyroid medicine.  Thyroid maintenance/disease is one of patience.  You will not get good care in the ER for following your thyroid.  The ER is not the place for thyroid maintenance issues.  Please don't be offended.  I know that at the time it was the best decision you could make but thyroid issues are a life long problem and require a physician to follow you.   Start with 50 mcg per day of levothyroxine and find a doctor.   I have a good Family doctor that follows me.  Most of the poeple on the internet have steered me away from endos and my doctor seems to get it.

Good luck

[Barb135]

TSH should never be used alone, to diagnose or treat a thyroid issue.  It is, at best an "indicator" that there may be something wrong.  You doctor is the one "shooting in the dark" by not testing the FT3 and FT4, since the TSH "indicates" a problem. .  

The "new" (8 yrs ago) reference range for TSH is 0.3-3.0, so obviously, you are above that.  Reference ranges for the other tests (FT3 and FT4) depend on the lab doing the analysis, so whenever you post FT3/FT4 results, make sure you add the reference ranges.  

Stand up for yourself and get the testing, whether it be from this doc or another; or if you need to, we can give you websites from which you can order the lab work yourself.  You order the tests (may not be covered by insurance), they e-mail you a lab order and send you to a lab in your area for the blood draw.  I did this once and the whole process - from order to having results in my hand - was 3 days...... not sure why it takes so long when our doctors do it??

[Judi2]

Barb, thanks so much for taking the time to respond.  It eases my mind a bit to know that my TSH definitely indicates a problem, the doctor made it sound like it was so marginal it was a shot in the dark and I've read a lot of conflicting things on normal test ranges.

[Barb135]

Your TSH of 5.32 "indicates" that you are hypo and need *some* med; whether 100 mcg is too much or not is going to be up for grabs.  It's best to start out at a lower dose and work your way up, as needed, but this is best done in conjunction with FT3/FT4 testing.

Levothyroxine must build in the system and it takes 4-6 weeks to get the full effect of it, although some people begin seeing minor changes after only a week or so (first thing I noticed was that the bags under my eyes were gone).  It's also not unusual for a person to feel worse, after beginning the med; this is because your body must get used to having the hormones again.  In your case, starting out at 100 mcg right off the bat, you need to be careful that you don't become hyper.  

Symptoms of being hyper could include heart palpitations, sudden weight loss, extreme mood swings, sweating, etc.

Fibromyalgia is usually diagnosed when the doctor can't find anything else wrong, but the patient obviously has symptoms.  It's not unusual for fibromyalgia to "turn into|" hypothyroidism.  

You already know that you need the Free T3 and Free T4, and without them, there's not a lot more we can say about your particular situation.