I cant take it anymore..... This disease is nuts. There has got to be something weird going on with me. My blood work says HYPO but i have all the HYPER symptoms. If I even take the smallest amount of LEVO I get sick for about 2 hours exactly 5 hours after I take the dose. What gives? How could I flip flop back and forth so easily?
Is it possible to be both? I asked my endo and he said "doubtful" but no one has given me any answers. I am going to try to get into southwestern medical center in dallas to see if they will do a group study on me to figure out exactly what is going on. Has anyone been there?
Adrenal Fatigue can make a hypo person worse if the hypo person takes the meds and has severe adrenal fatigue. Your last endo did not do an adequate adrenal test on you. 24 hour saliva is the ONLY reliable test for adrenals.
Read the below article. It can be dangerous for some hypos to take hormone with adrenal fatigue. It even says so on the warning labels in your thyroid meds:
Sometimes there can be 'crossover' symptoms where the body is adjusting to meds.
It is where the TSH is still higher than normal and the FT3/FT4 are also high.
It does take time for the TSH to come down and FT3/FT4 to level itself out.
There is also the fact that you may have Hashis and Graves too but that is uncommon.
I have felt hyper with a med increase and felt warm, hot flushes (as in waves ) then cold and clammy an hour later.
One classic example of this is where my levels have gone low and I have had to increase my T4 and have found the top half of my body very warm, yet my legs and feet freezing.
I always refer to this as crossover symptoms and find it usually rights itself as the meds absorb into the blood and the body gets used to them.
My chiropractor gave me the kit to take home. He is also testing me for TH1/TH2 dominance with a urine test. I will do the tests tomorrow. My insurance is covering it, so I've no idea the cost; however, my chiro said it is cheaper than the blood cortisol test.
Bruce...I was hyper to hypo every 2-3 weeks prior to RAI as I have Graves and was on anti-thyroid meds.
This part of my life,.....I never want to go through again, it was absolute he//.
I can give you examples of what I have felt since RAI if thats any help to you.
1, I would suffer horribly with mouth ulcers (this I found out to be HYPO and also B12 deficiency )
2, I would get hip/leg ache that was really painful when Hypo.
3, I would get hot sweats around 2-4am (when the thyroid releases its most hormones) even when I was hypo.This was the thyroids way of 'dumping' also.
4. I would have slow pulse when heading hypo (upon waking) and would take my pulse 2-3 times that day and if the same the next day...would increase my T4 by 12.5mcg (enough to get the heartrate up a bit)
5. I would be hot and sweaty on top part of body and from the waist done...cold and clammy (as I said ..this was crossover symptoms) TSH over 4.0 and yet FT3/FT4 good level.
6. If hyper I would eat like a horse.
7. If hypo..wouldnt be hungry but would crave soft drink (soda or something sweet)
8. Hypo would cause constipation and Hyper the opposite where I would use my bowels 2-3 times a day.
9. Never had problems with bread, gluten etc but couldnt handle full cream milk....had to drink light or skim milk or I would get 'queezy tummy".
10. I got anxiety when I was BOTH hyper and hypo. People who say anxiety is hyper is totally WRONG.
11. I would get very teary when Hypo (feel flat, no energy)
12. When hyper, I could clean the house from top to bottom in an hour! When hypo...I would spend a day in my pj's...no motivation whatsoever.
Bruce...YES I did feel hyper while the dose increase was adjusting but I would also go for labs if there was any change in my symptoms.
I would keep a journal , listing dose, symptoms, pulse etc every day.
I did this for 12 months.
I used to look back on it if I was 'unsure' if I was hyper or hypo.
Sometimes I would think I was heading hyper but yet I would have mouth ulcers so I knew that my levels were 'out of whack' so to speak.
Some may call this irrelevant info but it worked for me...it got my levels good.
I did get a higher than normal TSH which went to over 7.0 a while back but this was due to a pit. tumour.
Within 3 weeks my TSH had gone back done to just over 4.0 with no change in dosage.
Although I must add that my body DOES absorb meds FAST.
Where some people will take 6 weeks to go from hypo to hyper...my body can do that within 2 weeks and vice versa.
But since the removal of the pit. tumour, my levels are evening out once again.
I always know if my FT3 is too high as I get hot sweats and fast heartrate and the symptoms dont disappear until I cut out 12.5mcg for that week.
All dosing is done over a weekly amount and not a daily amount.
Most Docs do this. They will calculate your dosage by the week then even it out for each day.
For example....I was taking 62.5mcg 4 days a week and 50mcg 3 days a week ..alternating....total 400mcg weekly.
I found taking this dose was good until the 4th week when my FT3 would go up and I would get hyper symptoms.
So then I decided to take 62.5 x 4 and 50 x 3 for 3 weeks and then the 4th week , would take 62.5 x 3 and 50 x 4 and still felt hyper.
So I narrowed it down to one week taking 62.5 x 4 and 50 x 3 (400mcg weekly) ...and then week 2 ..taking 62.5 x 3 and 50 x 4(375mcg weekly).
This has worked for me so I've stuck with those calculations and dosing.
It was basically 'tweaking ' my meds...took a lot of patience and trial and error but has worked for me now for over 5 months.I did this with the 'ok' from my Doc and most times dont see him as much now. I get lab sheets from him and when labs are needed, the results are faxed to me personally and I work out if I need to increase/decrease or stay as I am.
Because of heart issues, I cannot handle my FT3 in the 'higher' range but my FT4 is always near top of the range and I feel ok with this.
I have energy and I dont ache.
I am going crazy. for the last 6 months, I think I have been switching from Hypo to Hyper. I have been Hypo for 12 years, about 6 months ago my new doctor said my TSH as on the low side, so he upped my levothyroxine to 175mcg from 150mcg...and he said it would probably help me lose a few pounds, which couldnt hurt ( I'm about 50lbs overweight). So fast forward to now... I've had the most miserable life ever... leg cramps that are getting in the way of my job now, almost daily. Coconut water used to help a lot, but lately, even that doesn't cut it completely. I go from being fatigued and lethargic to another day with new symptoms of Nausea, Headache, insomnia (major), ravenously hungry, dizziness, palpitations, feeling like I'm on speed, and did I mention LEG CRAMPS....OMG. I have been swinging back and forth between the 2 for a few weeks now, and its wreaking havoc on my life! HELP. My Dr said my T4 is fine, T3 is fine, TSH is high, took ultrasound of my thyroid...its inflammed..he says maybe Hashimotos Thyroiditis? going to a specialist (Endocrinologist) next week. I just hope I can last that long. These sleepless nights, leg cramps are putting me over the edge. I will mention that I am not on any other medications. Just a multivitamin, Magnesium (500mg per day), B12, Fish Oil, Calcium. ( all these vitamins were recommended by my current DR) I just can't beleive I've been going through this for this long, and My doctor is probably to blame, since he upped my dosage of levothyroxine. I'm now on the lower dose 125mcg. Any Advise??? I'm desperate!
First off Smilerdeb hasn't been active on the forum for a couple of years, so it's unlikely that she will respond to your question.
Secondly, I'm confused - or you are........... lol TSH works backward from what you think it should. When TSH is low, that indicates hyper (over active), so your doctor should have been lowering your medication, not raising it. And when TSH is high, that indicates hypo (under active), so medication should be increased.
Some symptoms can cross over between hyper and hypo, so it's hard to say what's going on with you.
Do you have current thyroid labs that you can post so we can see what the actual numbers are? "My Dr said my T4 is fine, T3 is fine"....... are those FREE T3 and FREE T4, or are they total? Testing for Total T3 and Total T4 is obsolete and of little value; you should make sure you are tested for the Frees.
If you'll post the actual test results so we can see where they are, we'll be able to better assess your situation. Be sure to include reference ranges since those vary lab to lab and must come from your own report. Sounds like your doctor is relying too much on TSH for adjusting your medication.
Additionally, vitamins/minerals, especially calcium should not be taken within 4 hours of taking levothyroxine.
I saw this post from 2 years ago and i thought "who was the moron that started this post?" and then i realized it was mine LOL.
Just so you know, I had some sort of acute thyroidititis. It hit me very quickly, it was not your every day hashimotos. I went from one day feeling normal to a complete 360 within a week later.
Now that I look back, i realize that my symptoms were purely hypo. The anxiety, the shaking, the sweating. The only thing that i had that was hyper was the diareah, but im thinking that was because of the anxiety. I know its possible to have TPO and TSI at the same time, but I was clearly very hypothyroid.
I am going to humble myself to ask why "total t3 and total t4 values" and their use in monitoring for hyperthyroid are obsolete and of little value...why? My endocrinologist and primary MD have been using my total T4 to monitor me. My total t4 is 11.7 (reference range (5.3-12.3)---) Though I am in the normal level I am on the upper limit and experiencing many hyper symptoms. My doctor is upping my PTU. So any who--why is it that they must monitor the free t3 and free t4--is it because that is what is available for the cells and more related to the symptoms? I need to get a handle on my symptoms soon--especially the heart rate since that is what put me out of work last year for 5 weeks. Any info on this would be greatly appreciated--thanks:)
Kevin... I am... 255 MCG t4 dude. Remember when i couldnt take even 12.5 mcg? LOL what a wuss i was. Im ready for my next increase. Im going to land this puppy at 300 mcg is my guess. IM only on day 10 of 255 (up from 235) but im still exhausted but not nearly as bad as before.
cool keep at but take it slow. its better that way. don't rush it. hang in there! retesting tomorrow after 8 weeks. slow and steady!! give yourself time to adjust to each dose! i know a pain in the a##
Thx for replying. So I looked back at what I wrote down. In May my T4 was 1.5 and my TSH was 6.03. August T4 1.8 TSH 6.03, September T4 1.3 and TSH 8.32. In August I was on 175mcg of levothyroixine, but my symptoms seemed like hyperthyroid instead of hypo (Hot flashes, heart pounding, insomnia, leg cramps,heart racing,Nausea,Headache).. It SEEMED that I was overmedicated to me?????? I asked the DR if I could lower my dose to 125mg and he said o.k. 1 week later, still bad symptoms. He took a ultrasound of thyroid = inflammation. Sent me to endocrinologist, that was Oct 4. Endo said yes, stay on 125mcg, get labs done in 4-6 weeks. NOW, for last week, I've had a terrible metallic taste in my mouth, in addition to all of the other symptoms, so I called Endo and said, can I just STOP taking the levothyroixine, and he said yes, stop. Now 2 days later, after missing 2 days worth of levothyroixine, I feel so terrible. Weak, tired, but insomia (yep, insomnia), body feels weird, fuzzy head, dizzy, occasional heart palpitatons, and I literally feel like theres a golf ball in my throat. I feel very abnormal, very sluggish, can't think straight. The metallic taste in my mouth is overwhelming. I am at my wits end. I go back to Endo on Tuesday morning October 16, but I just took 1/2 of a levothyroxine pill because everything i read says NOT TO ABRUPTLY STOP IT, so I took 1/2 of the 125mcg pill. I am almost wondering if should go to the ER, I am scared now. So sick of this!!!!
Also...does anyone ever think taking levothyroxine can become unaffective or taking it for 10 years makes it not effective in your body because its synthetic , and you should swith to Synthroid or another form of Thyroid replacement med?
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