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Headaches/Hypo
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Lera21358 posted:
I was diagnosed as being Hypothyroid over a year ago with a TSH of 6.84. The doctor started me on 25mcg of Levothyroxine. After 3 months I wasn't any better and labs showed 5.21 so the doctor increased it to 50 mcg. I felt a little better but my chief complaint was the migraines that wouldn't go away. Went back another 3 months later and Labs at 3.68 so given I was still having all the symptoms and headaches not better, she increased my dosage to 75 mcg. I started feeling better within 3 days. The headaches were gone, and I felt better started to loose the 20 pounds I had put on in one months time, however I was having insomina a lot, but I wasn't feeling cold anymore. I go back after 3 months and the doctor said she over shot me that my TSH said it was .32 but I begged her not to lower it because I was feeling so much better. She agreed to keep me on it 3 more months and test again. I just got tested again and TSH was at .56 and she lowered my dosage back down to 50mcg. I did however ask her if we can try another brand which she agreed and now I'm on Levoxyl and headaches are back, hair coming out, dry skin.

My question is exactly how dangerous would it have been if my doctor kept me on 75mcg and how can I convience her to up my dosage again when I go back in 3 months.

I already tried to hint that maybe my normal is on the low end. She didn't buy that though. Any suggestions?
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PunkyBro responded:
Hi Lera21358, I just found this web site recently and have got no replies on my message but have been reading everyone else, my dose is 100mcg and I have been threw all kinds of different mcg,s. I feel like I am missing something and have tries to go see a specialist but can not unless the doctors refer me as if something serious is going on. I also had major headaches, tired all the time, no energy, hair loss, and the worst is the weight gain from I have no clue where because I eat just as I have forever but I feel like I breath the air and gain weight, puffy. For the head aches my husband has a boss at work that is into that Neken magnetic stuff so just to try I ordered a neck less and it has worked for me. I thought that I read somewhere in all these messages that someone had tried a different brand of medicine but I can not find the message of what the name was I am taking Levothyroxine, but feel like you that it is not the right dosage, brand or I am just missing something that I could be adding. Any ways please keep in touch and I will do the same. Good luck to you and all with this frustrating problem.
 
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DOGDANCING responded:
Being Hyperthyroid is dangerous. It can cause unreparable heart damage.

Sounds like you may need an alternating dose...like 75 mcg mon-wed-fri and 50mcg the other days of the week.

Dog

two hyoerthyroid pregnancies PTU usage -Graves - RAI - levoxyl - doing ehhhh not as good as I want to be doing.
 
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Lera21358 responded:
Yeah I thought of alternating dosage and mentioned it to my doctor. I think she never heard of such a thing because she looked at me like I was a looney toon. Is there any literature out that that I might be able to print and show her?

I'm hypo because I had my left thyroid removed due to a large nodule. It took years after that surgery for my TSH labs to reflect how I was truly feeling. Perhaps since the TSH pulsates throughout the day that when I get my labs done (within 2 hours upon awaken) it just happens to be on the low end. When on the 75 mcg I could feel the spikes... feeling great and then a little hyper. I never felt racy or intolerant to hot while on the 75 mcg.

I did on the last two weeks on the 75 mcg start feeling cold again and a few headaches. I thought that was classic hypo signs but yet the labs didn't reflect that.

This is so frustrating to find the correct dosage! I was so happy that my Doctor knew about the new TSH levels and identified what was going on so I shouldn't be as impatient as I am.
 
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x822x responded:
Just an FYI- I have an issue where I was on 100 and went hyper, so they knocked me down to 75mcg and I went up to over 12 TSH. My dr prescribed me 88mcg. I had no idea there was an in between. Anyway I'm only 2.5 weeks into it and I'm dragging and headaches galore. I'm probably going to call Monday.

They already made me wait 6 weeks because they tested me in Jan and I was over 12 TSH and they wanted to make sure that was a legit reading vs. a bad day.

I'm thinking of getting an endo because the only time I didn't have headaches was when I was pretty near hyper. I've been checked for every other possibility and it ALWAYS goes a long with being extremely tired.

So yeah I'd ask about the 88mcg dose. It does exist!
 
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Meri1974 responded:
It would be very unprofessional of your endo doc to keep increasing your dosage if your 75mcg really lowered your TSH. I formerally had hyperthyroidism and having low TSH readings like .20 yeah made me lose a TON of weight, but I suffered HORRIBLE panic attacks constantly throughout the day, anxiety off the charts. I could not leave my house for months. I had to have the thyroid removed. Now this is different because my own body was making too much of the hormone. After surgery, synthroid was started at 100mcg to begin, then 112, then 120 to 137 to 150 and back to 137 finally after stopping my birth control, both hormones where waring with each other. It was not for contraception, but for endometriosis. I have been on steady 137mcg for months now, good for a while now the panic attacks started again and the anxiety started. I just had more bloodwork done to see where the TSH is. The endo doc likes it to be like 2.5, nothing less than 1.0. If I go up over 5. something I also feel anxious. I still don't have the result, but I would never recommend increasing when the TSH is so low. It may feel good for a while, but you will not know what other symptoms may happen next. Listen I am not a doctor but have been on both sides of TSH very low and very high and trying to regulate the synthroid is a you-know-what. Yeah I do believe a low reading is dangerous. I lost a lot of hair. Since being hypo I gained all the weight back, do have dry skin, hair is getting thicker again, but my endometriosis raised it's ugly head and from not being able to treat that with the pill, I am not looking at losing my left ovary. It is enlarged now and I am in so much pain I walked bent over, I am anemic, and now have an enlarged spleen. Had CT of abdomen in ER yesterday confirming all of this. Endo docs can play with the doses like 50mcg for 3 days and 75mcg for 4 days. I have had to do stuff like that. Listen this may be a pain on getting regulated but eventually it will happen. I have also had severe headaches last for days and now cold while being hypo. But my best advice to you is to listen to your doctor. Unfortunately we are not the experts, but we can continue to get educated and try different things, I keep my primary care doc and endo doc on the same page constantly. So sorry I am all over the place on this note, another symptom of being in hyper mode, "talking too much"...LOL!

Hope I was some help, I know and feel the pain of thyroid and hormone level issues. I am just mad I am dealing with two major hormone issues and paying the price.

Meri1974
 
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petalpockets responded:
Hello! I'm new to the boards . I was recently diagnosed with hyperthyroidism, and I also frequently experience headaches that would last for up to two days!! Three days out of the week I would have a headache. I asked my doctor about this, and whether it had a correlation with my thyroid problem and he explained that it could possibly be something in my diet. If you were to have increased your intake of a certain food your body could be reacting to it through headaches. I was given a diet guideline to follow, and I did notice some changes. The headaches didn't last as long and I didn't have as many.

I hope this helps.
 
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Lera21358 responded:
Hello all and thank you for the advice. Update: I'm two weeks into my 50 mcg dosage and headaches are not as often but fatigue, lost of appetite, hair loss, (sever)constipation, cold, bloating and dry skin have returned in force!

My diet hadn't changed at all and I do know what foods increase and decrease and they really are not part of my normal diet. If I do eat let?s say Brussels sprouts it's only a few and maybe once a month. I only weigh 112 lbs right now but my start weight all my life before this was 102 lbs. I never could gain weight no matter what, now everything I eat which isn?t much puts on pounds. I guess I can live with that but the other symptoms are so taxing day after day.

I'm sure being I'm 51 years old estrogen plays a role but my doctor tested it and since she didn?t mention it I assume that came back normal. I don't even think I'm pre-menopausal yet. Hard to tell without blood test since I had a partial hysterectomy.

I just learned from my mother that my grandmother had thyroid disorder. I often wondered why I got that 5 cm follicular adenoma, that surgery to remove my left thyroid.

I know it helps to share with one another our gripes, frustration, fear, and just telling our stories. I have decent days and some days where I do not get out of bed. Thank goodness I do not have to work, I cannot imagine if I had to work like some people. The fatigue is debilitating and it?s a vicious cycle. If you don?t force yourself to be active your fatigue become worse. I cannot tell you how many times just getting up to do the dishes wore me out to where I had to take a nap.

I?ve seen 5 different Endo doctor?s since that Adenoma reared its ugly head and every one said I was NORMAL nothing wrong. I knew something wasn?t? right for years but my labs just wasn?t showing it. Finally it started to show and my family practitioner has been really good. She let me stay longer on the higher dosage for a few extra weeks just in case those labs were wrong. Guess two readings told her enough. I can totally understand that, but while on that higher dosage I wasn?t having hardly any symptoms. I was never hot nor too cold either?no anxiety, no palpitations, little to no fatigue and little hair loss.

The reason why she upped me to the 75 mcg in the first place because my labs were high 3.80 to 4.(something) and I was feeling really bad. I?m now thinking the change in brand of drug is the trick. I?m doing better on Levoxyl 50 mcg than the other one.

I will let you all know what my labs say when I go back. The doctor said since I changed brands that it will take 3 weeks to notice a difference.

Hey I have a question: Anyone experience acne when their TSH is below 1.0? and zero acne when it?s above 2.0? I noticed that change. Again 51 years old, no acne problems and when I was on the 75 mcg I got acne, now it?s clearing up. Strange, wonder if any studies were done with acne and thyroid hormone?

OK I?ve rambled on. I enjoy reading all your stories and feel for you. Trust me, who knows better than us who suffer, different color car but we still drive on the same street right?
 
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1smoothgal responded:
LERA21358,

Yes, same street, different car! Too funny analogy-Hug-

PLEASE find 1 or 2 of these capsule products for thyroid support-these both give amazing energy without the jitters-because they are made for thyroid support-not weight loss!(but weight loss may occur)

'Adrenal Energy' by Crystal Star info HealthyHealing.com

'Metabolic Advantage' by Enzymatic Therapy info www.enzy.com

I found both at 'Whole Foods" health food store, but they can be purchased directly from the web sites.

I take 1 of each when I first wake up, then 1 of each again at lunch time to see me through the day, but not so rev ved up I can't sleep at night.

I hope this helps you. Kim
 
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KristenA1973 responded:
I have been recently diagnosed with Hashimitos and was told that I would have to be in my meds for the rest of life and the dosage would probably go higher and higher. I also suffer from migraines/headaches. I am not sure what to do about it. I am hoping the meds would kick in and take care of things.
 
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AlterQuest responded:
Hi,

There are other things you can look at:

If your diet is good, look at getting a hair analysis for heavy metals. Mercury in dental fillings and in some fish, and flouride in water supplies can both interfere with thyroid function.
I had continuous migraines for a long time and then had the amalgam (mercury) fillings taken out of my teeth. That was the last time I had a migraine and my major chronic fatigue lifted at the same time (like a fog being removed from my head.)

Also look at the info on this site about Reverse T3 and also look at the info on http://stopthethyroidmadness.com/
and http://wilsonssyndrome.com/
Both of these sites look at thyroid issues from a totally new perspective.

Find a practitioner who understands these new discoveries (I found a good one by phoning my local compounding chemist/pharmacy) and get some more specific tests done. The old T3, T4 and TSH tests do not show the true picture.
Hope this is helpful.
 
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senility replied to PunkyBro's response:
hi there punky bro lol., i hear every thing you are saying because i feel the same, i am also hypo too and am on 50mcg tho and have been right from word go 7 yrs ago but i felt fine then, i only went to the doc as i had the flu, since then i have put on heaps of weight and i mean alot, i think its about 25kilos over five yrs, and i am 41yrs, i look after myself and dress well and present my self well but i feelyuk, this medicine levothyroixine is slowly destroying so many of us. My tests have always since taking meds read normal altho my last one last week during a parathyroid test it said my thyroid one read a bit too much, which totally doesnt make sense because i have been trying to come off my thryoixine but it was only for a week and if anything it should read too low with not taking any. I like you feel like they are missing something, however they found my phosporus a bit low and usually people can be low on phospurus and calcium which the tabs sometimes deplete out .. I am being referred to a endroconoloigst finally so hope i come right . but the weird thing is this special parathryoid test i had which is a blood one, reveealed it was a bit high and this is really important as it is critical for calcium and phospurus metabolism which i would imagine could lead to people having many probs because of it., aches bone aches joint aches, and all sorts, my ankle ., on e in particular kills me. I have also struggled to keep my calcium level right also, altho now it is , i am hoping this endo can help me, but thought i would pass on info regarding the parathyroid test, because i have never even heard of it until last week. Hope you are ok and think positively and hang in there, take care ok, bye my private email is leannebatey@hotmail.com if anyone wants to talk etc. I am in new zealand
 
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Lera21358 replied to senility's response:
Hello all, it has been a while since I updated but I'm still having problems and will explain. Maybe someone can help me out.

My doctor took me off 75 mcg and put me on 50 mcg of Levoxyl.

I lost my weight and only had occasional migraines and a little spike here in there to where I would feel cold and stuff. That changed 3 weeks ago and I was so ill I should have gone to the Emergency Room, but I didn't. figure like always it was a spike and I'll level out in a few days. Well I wasn't leveling out so made a doctor's appointment in the 3rd week of symptoms; Migraine, anxiety (really bad), very cold, swelling in legs, hands, feet, fatigue, and dry skin. My appointment was on Monday, and wouldn't you know on Sunday I started to feel better in that my migraine was now only a small headache, and feeling slight anxiety but I didn't cancel the appointment. I went and explained to my doctor what I've been going through. She took blood, and gave me an EKG.

She called the next morning to tell me my labs were fine! My heart was fine, my Vitamin D is fine. (2 months prior it wasn't and was put on mega dosage of V-D)

Great I thought, just great...while I'm glad I'm feeling better I know I'll spike again! I just know I'm in between dosage but with my lab at 2.6 I'm normal! GRRR.

What in the heck other then my thyroid could have caused this? What am I spiking so much? This was the worse episode I have ever had. I mean it was worse then before I had the surgery for my left thyroid removal and I was pretty bad then.

I just do not know what to make of this or what to do now?

My main concern are the headaches...they are really bad. I get them for 3 days, go away a day, then they come back. Why?

I mean I can understand it if when I was first diagnosed hypo and my labs were like 90. but it wasn't it was only like 7.(something).

The doctor gave me I think it is called relpax for my migraines which helps but I wasn't given very many so I'm finding myself rationing them.

What do you all think is the cause of these spikes if my labs shows I'm normal?
 
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Lera21358 replied to Lera21358's response:
PunkyBo,

You know after my doctor's appointment this past monday I thought of the parathyroid test too. When I spoke with my doctor and told her since i had very low V-D do you think maybe we should test my PTH and she stated. Well your V-D and Calcium are normal so it isn't my parathyroids.

It made since since I had surgery that maybe one of my parathyroid got damaged. It also answered my headaches too.

My dentist stated my fillings are not causing the headache,

AlterQuest: I've checked out before the sites you listed and raised this with my doctor and she rolled her eyes.

Now I'm on Tri-Care and my doctor offered to refer me to an endo doctor however I refused because I've seen him before. A few months before I was placed on meds for my thyroid I saw this endo. I told him about headaches, hair loss, swelling and stuff. Know what he said? He said "If it was your thyroid your body would be swollen all the time not just for a few weeks" He scooted me out the door and treated me like I was looking for attention. When my doctor offered to send me to see him again, I told her no thanks and told her exactly what he said to me. She said Oh Dear!

I'm stuck with my primary care physician and I like her I just don't understand why she won't suggest something like for me to take 75mcg one day and a 50 the other day to see if this stops the spikes because personally I think I'm in between dosage. That is all I can think of.
 
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Lera21358 replied to AlterQuest's response:
AlterQuest:

I've read those sites and funny thing is the stopthethryodmadness I read like before I logged in here. I've read the wilson syndrome and mentioned that to my doctor and she rolled her eyes. My fillings are not the mercury kind, water tested here twice a year (well water not city) and it is fine. Thanks though, I am interested in the stop the thyroid madness and will read more on it.


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