# Coming up on 6 week mark of being on Levothyroxine...not feeling a difference????



## pinkkpixxie (Oct 22, 2009)

Well next Saturday will be the 6 week mark for my being back on levothyroxine. I was off of it for over a year due to lack of insurance. My last rx was for 75mg but the only levothyroxine I could get was 88mg, so I've been taking that since October 17th.

I wish I could say my symptoms have dissipated, or diminished but I don't think they have. While I'm not having the pass out feeling anymore, I still do get lightheaded just sitting at my desk at work.

I'm worried that being back on the levothyroxine isn't solving my problems, therefore thinking its not my thyroid causing my problems. These are the symptoms I'm still experiencing, if anyone could help me as far as what you think it could be. If they don't go away, I'm just going to go to the ER and demand they run tests to figure out what's wrong with me.

-Floaters in eyes
-Possible pinched nerve in shoulder (DR was pretty much positive but w/o xrays etc. couldn't say 100%) 
-Horrible headache that encompasses my whole head from base of neck to temples. Lasted for about 1 1/2 weeks, now comes and goes but nowhere near as intense. The only thing that touched it a bit was excedrin tension headache.
-Still have odd left arm tingling/pain down into pinky finger and ache in thumb joint. Awful pain where neck and shoulder meet, where spine meets neck, and shoulder blade, pain radiates into collarbone.
-Entire body weakness
-Nausea & vomiting (I've vomited all but 1 day this week. It's not a lot, and it just comes at random times like in the middle of a restaurant.)
-Tingling on top of head, hands feet, sometimes thighs
-Fatigue all the time
-Heartburn
-Joint pain/stiffness
-Hot flashes/sweaty palms/heart racing - feel this before i get pass out feeling or vomit. Worst feeling in the world
-Stiff neck (all the shoulder/arm/neck issues are on left side, including a random sharp shooting pain from temple to base of skull. It'll happen maybe 1-3x a day)
-Four days ago I had a weird, random abdominal pain that woke me up at 5:30am convinced my appendix was bursting but the pain lessened by 7am and now it's gone, don't even feel like it ever happened. I'm chalking it up to an ovarian cyst but not positive.
-Shakiness when I get the pass out feeling. Weakness like my legs can't support me.
-Overall just a feeling of not being well, I just never feel good. I hate it.
-Tender glands in neck sometimes.
-PMS is extreme
-I had an EKG that said my heart is fine. 
-I had an ultrasound of my thyroid in 2006 and it was enlarged. No action taken since.
-Hard time concentrating, memorizing things, very forgetful which is interfering with my job and life.
-Mood swings, very emotional, irritable.

I know some of these symptoms are just random but figured i'd just include everything. When/If I do go to the ER I want to be tested for SLE (lupus), MS, diabetes, Adrenals, Vitamin D (as PCP had inquired to my levels) A complete CBC, TSH...I'm just not looking forward to getting the bill, I've already got 2 bills to pay for urgent care/ER since I don't have insurance.

If anyone can offer any advice as to why I might not be feeling better or what you think it could be by my symptoms. Feel free to PM me too. I just desperately want to feel better. I constantly feel depressed, like whatever is wrong with me is serious. I can't sleep at night because I've associated it with waking up feeling dizzy, heart racing, etc. which ER dr felt might be sleep apnea. So now I am terrified to sleep, sometimes staying up till 5-6am. Luckily I don't work till noon but this is no way to live life....help!!!!

thank you in advance


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## chopper (Mar 4, 2007)

If you are looking for random suggestions some of my guesses would include a small adrenal tumor as a first choice.

http://www.debakeydepartmentofsurge...?proc_name=adrenal+gland+tumor&content_id=274

those little buggers can kick in at any time and are hard to diagnose. Vomitting, the rush, dizziness are all symptoms BUT episodes 
usually include short bursts of very high blood pressure.

If you've got some money a good blood pressure monitor would be a smart purchase so you can track it.

You can ask the doc for a 24 hour catecholamine test to help rule this out although it is not definitive.

Im trying to follow simple logic. Passing out usually equals brain, adrenals, blood sugar, heart, blood flow or oxygen flow.

How's you blood sugar? That feeling can also be similar to a quick drop in blood sugar. Do you have a glucose monitor? You can get them cheap on eBay.


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## Andros (Aug 26, 2009)

pinkkpixxie said:


> Well next Saturday will be the 6 week mark for my being back on levothyroxine. I was off of it for over a year due to lack of insurance. My last rx was for 75mg but the only levothyroxine I could get was 88mg, so I've been taking that since October 17th.
> 
> I wish I could say my symptoms have dissipated, or diminished but I don't think they have. While I'm not having the pass out feeling anymore, I still do get lightheaded just sitting at my desk at work.
> 
> ...


When you started on your friend's Rx of 88 mcg. Levothyroxine, did you go to the doctor and get labs done before you did that?

It sounds like you are very ill and it "is" possible that you are hyperthyroid, not hypothyroid.

So, if you could let me know, perhaps we get some hints as to what is going on.

Also, wonder if you can find a clinic in your area rather than the ER which is horribly expensive.

We all are worried for you.


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## pinkkpixxie (Oct 22, 2009)

Thank you both for responding so quickly. No, I didn't get labs done before I started taking the 88mg. I was wondering if possibly it could be making me have hyperthyroid symptoms, but because I was feeling the weird lightheaded/dizzy/pass out thing before, I assumed (and we all know what happens when you assume...) that it wouldn't be from the higher dose of levothyroxine.

I haven't gotten my blood sugar checked yet as I haven't been able to get labwork done due to not having insurance. I have thought maybe that was it, and did change my diet cutting out pop and trying to really watch my sugar intake but it didn't seem to affect my symptoms either way--worse or better. Recently I have been drinking diet pop maybe 2x a week so I wonder if the aspartame is affecting me? OTherwise I use Stevia-derived products in my coffee, teas, etc.

One other thing I haven't mentioned, back in 2008 I ended up going to the gyno because my breasts began producing breast milk and I wasn't and have never been pregnant. They did tests and determined my prolactin levels were fine, and never did anything else about it. I actually had to calls weeks later to get the results because they seemed to think it wasn't important to tell me! So I'm not sure if that could also be linked to something making me sick?

The only other odd thing I noticed, and I only noticed it at work & the time I went to the urgent care, is when I looked in the toilet after urinating, it looked like there were little floating things in it. Very small, and almost unnoticeable but with the bright lights I could see them settled to the bottom of the toilet, and then it went away and I haven't noticed them anymore. I read online it could be just protein which is natural.

I am just frustrated because I feel like everyone in my life thinks I'm overreacting, that I just look for things to be wrong with me. I break down crying several times a day because I KNOW my body and I KNOW something is wrong and nobody listens to me. They just ignore me, say I'm being silly and to just stop worrying and I'll feel better. The only time my boyfriend (who is wonderful and loving and caring, but also a bit annoyed with my constant worrying) really stops to hug me is when I'm crying so hard and say what if it is something serious and no one listened? He feels that if I've gone to the urgent care and er and they haven't found anything then I should be fine. Ah, the simple minds of men, LOL

Ok before I end up writing a novel here, thank you guys again so much for responding and giving me advice, I desperately need it!!!!!

THANK YOU!!!!


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## chopper (Mar 4, 2007)

I don't get it? You added that you were producing milk from your breasts and yet your prolactin level was normal? That just doesn't seem to make any sense to me since Prolactin IS the signal for breasts to make milk as far as I know and unless it reaches a certain level you shouldn't be able to lactate.

How long did this go on for and are we talking about a droplet or enough milk to feed a set of quintuplets? Were there any other symptoms during this time? Was your period normal during this time?

I don't know. Im stumped. If your Prolactin was high enough to produce milk, then I would say Prolactinoma:

A prolactinoma is a noncancerous pituitary tumor that produces a hormone called prolactin. This results in too much prolactin in the blood.

Symptoms

In women:

Abnormal milk flow from the breast in a woman who is not pregnant or nursing (galactorrhea)
Breast tenderness
Stopping of menstruation not related to menopause
Decreased sexual interest
Headache
Infertility
Vision changes


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## chopper (Mar 4, 2007)

Added - It would be good to probably at least get your prolactin retested. Actually, you need a comprehensive workup or you'll just keep going in circles. You need to find a doc that's going to give you a COMPLETE thyroid, metabolic, blood, adrenals, full sex hormones.

Until you have everything there in black and white, side by side, we're just taking stabs at various things. A pit MRI would not be a bad idea either. You need some real good blood work in my opinion in order to find a link to these various symptoms which although are well defined for you, are rather vague from a diagnostic point of view.


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## Andros (Aug 26, 2009)

pinkkpixxie said:


> Thank you both for responding so quickly. No, I didn't get labs done before I started taking the 88mg. I was wondering if possibly it could be making me have hyperthyroid symptoms, but because I was feeling the weird lightheaded/dizzy/pass out thing before, I assumed (and we all know what happens when you assume...) that it wouldn't be from the higher dose of levothyroxine.
> 
> I haven't gotten my blood sugar checked yet as I haven't been able to get labwork done due to not having insurance. I have thought maybe that was it, and did change my diet cutting out pop and trying to really watch my sugar intake but it didn't seem to affect my symptoms either way--worse or better. Recently I have been drinking diet pop maybe 2x a week so I wonder if the aspartame is affecting me? OTherwise I use Stevia-derived products in my coffee, teas, etc.
> 
> ...


Okay................aside from a pituitary tumor causing lactation; there are other causes which I will list. (Note that hypothyroid is one and in 2008 you may have been hypo but I believe you are hyper now.)

Overproduction of prolactin can result from causes other than a pituitary tumor, including:

Medications. The secretion of prolactin in your pituitary gland normally is suppressed by the brain chemical dopamine. Drugs that block dopamine production in your pituitary gland or that decrease the amount of dopamine that's stored in your brain may cause excess prolactin production, including:

Tranquilizers, such as trifluoperazine (Stelazine) and haloperidol (Haldol)

Anti-nausea and gastroesophageal reflux disease (GERD) drugs, such as metoclopramide (Reglan)

High blood pressure (hypertension) medications, such as methyldopa (Aldomet), phenoxybenzamine (Dibenzyline) and reserpine (Ser-Ap-Es).

Gastroesophageal reflux

high blood pressure

Hypothyroidism

Acromegaly

Other pituitary tumors. Other tumors in or near your pituitary gland, such as nonfunctioning tumors and those that can cause overproduction of growth hormone (acromegaly) or the hormone cortisol (Cushing's syndrome), may block the flow of dopamine from your brain to your pituitary gland.

:sad0047:Hypothyroidism. Excess production of prolactin may occur in people with hypothyroidism - insufficient hormone production by your thyroid gland. This usually occurs only in people with longstanding untreated hypothyroidism.

Here is the entire article which covers pituitary tumors as well..........
http://www.dreddyclinic.com/findinformation/pp/prolactinoma.htm

I am glad you hear you have such a supportive boyfriend. Sadly, thyroid disease leaves no stone unturned when it comes to your body. The entire endocrine system is affected. It's like trying to drive a car w/only 3 wheels. If one thing goes wrong, the rest surely will.

You may have had some protein in the urine or maybe even some little "dust chips" from kidney stones which is a common annoyance w/ thyroid disease so please, please drink plenty of water every day. Keep your kidneys and bladder flushed.


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## pinkkpixxie (Oct 22, 2009)

Again thank you for replying!

I'm definitely looking into everything you've both suggested, so when I do get to go the doctor, I'll have all my stuff straight and know what to ask them to test. I don't understand how my prolactin levels could've been fine either, as I've been producing breast milk since June 08 and it hasn't gone away. They don't leak, and I need to squeeze my nipple to get them to release milk but they do. The Dr said if I don't squeeze them it'd go away but it didn't.

The fact that I've had this stupid headache that won't go away makes me wonder if it could be to do with my pituitary gland. Also, my vision is very messed up as everything seems dimmer/darker like I can't see as much as I used to. It's like I'm looking through a smaller hole and can't see the whole picture anymore. I get a sharp, shooting pain along the left side of my head that goes from temple to base of skull.

I've found 2 other conditions I'm going to research--Cushing's Disease and Occipital Neuralgia.

As far as possibly being hyperthyroid, what should I do? Keep taking the 88mg until I can get labs done and get to the dr? I don't think I should stop taking the levothyroxine, right?


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## Andros (Aug 26, 2009)

pinkkpixxie said:


> Again thank you for replying!
> 
> I'm definitely looking into everything you've both suggested, so when I do get to go the doctor, I'll have all my stuff straight and know what to ask them to test. I don't understand how my prolactin levels could've been fine either, as I've been producing breast milk since June 08 and it hasn't gone away. They don't leak, and I need to squeeze my nipple to get them to release milk but they do. The Dr said if I don't squeeze them it'd go away but it didn't.
> 
> ...


We cannot give advice about medication so I suggest you ask yourself, "Do I feel better on this med or did I feel better before I started on it?"

This is why a good doc is necessary; you should research the above but also consider that you "may" have TED/GED (thyroid eye disease/Graves' eye disease) That could cause vision problems, headaches and various other symptoms of the periorbital area and cranium.

I am keeping you in my thoughts and prayers. Something has to give here.


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