Hi Oh my it's been forever I sincerely hope everyone is feeling ok. To catch up.. I'm feeling much better, after extensive testing from a Rheumatologist, his near word from word explanation;
"You have the markers for RA but not the full blown disease, no need for further testing or visits unless your symptoms get progressively worse."
That was a year and a half ago. Since then, my Endo Dr has increased my Cytomel to 10mcg in morning and 5 in the afternoon, and lowered my now Levothyroxide to 50mcg 6 days a week and 25mcg 1 day a week.
Last April I injured my rotator cuff at work and had to have surgery, so I was in a sling from end of June through July of 2013. I've reduced my Keppra myself from the prescribed 1000mg/day to one 500mg tablet about 3-4 times a week. The stuff builds up in my system and makes my kidneys hurt from stones. but at this level its still working great at controlling my epilepsy, so no complaints (well I'm sure I'll hear all about it from my Neurologist when I see her in couple weeks lol.
but about my aches and pains.. believe it or not they've dissipated quite a bit, I completely stopped all wheat/gluten/dairy (I discovered that was the reason for my super painful bloating, proliferate and whew smelly gas) As long as I stay away from both I have little to no 'flatulence'.
My feet? Well I still get the pains like walking on rocks but was told it was due to fallen arches, so through trial and error I've found some inserts to help with that, although after a day on my feet at work ouchy these puppies do bark, along with the knees.
Well, oh yeah my Doc said I'm perry-menopausal and this was probably the reason for my maddening hot flashes, as well as a contributing factor in my inability to lose weight, the Dr didn't send me my lab results from this last test but I have requested them.
That's how I'm doing how are you?
Unlike levoxyl and other T4 meds, cytomel/T3 does not have to be taken on an empty stomach. I actually take my first dose of T3, at the same time as my blood pressure med and fluid pill, in the morning, about an hour after I take my Tirosint (T4 med). Second dose of T3 is around noon, but of course, that depends on your schedule. Taking it too late in the day can cause sleep interference.
Hmm.. Thinking I will Look on iHerb.com for some different types of Magnesium, can't hurt right?
No problem. :) However the problem is magnesium oxide's 4% absorption. O_o A bit of a rip off? Yeah, i'd say so. :)
"Results indicated relatively poor bioavailability of magnesium oxide (fractional absorption 4 per cent) but significantly higher and equivalent bioavailability of magnesium chloride, magnesium lactate and magnesium aspartate. We conclude that there is relatively poor bioavailability of magnesium oxide, but greater and equivalent bioavailability of magnesium chloride, lactate, and aspartate. Inorganic magnesium salts, depending on the preparation, may have bioavailability equivalent to organic magnesium salts." - Excerpt from "Bioavailability of US commercial magnesium preparations." Pubmed PMID: 11794633
Hello, You've given me lots of information thank you, I will look into this magnesium, I do take Osteo-Citrate a supplement, containing, Calcium Citrate (200mg) and Magnesium Oxide (150mg) and bottle says to take 1 pill 2X/day have not been taking the 2nd pill.. guess I will now..
Hi, yes, I have been doing this.. I set my alarm to get up and take my thyroid meds, then go back to bed lol.. get up a couple hours later, wait a couple hours (unless I have to go to work sooner) and take my water pill, then wait till 3-4 o'clock to take my 2nd dose of Cytomel.. Keppra and vitamins are always late at night right b4 bed..
question: Dr says to take first Cytomel with Levoxyl in morning check I got that (about 6-9, sometimes 10am if I forgot to set alarm).. but 2nd dose at 1-2pm.. I'm at work at that time b/c I work 1-9pm, when is the best time to take 2nd dose? at 12:30 on my way to work? and take my water pill later in day?
Hi, Yes, Lyme tests came back neg across the board.. says my doc, Oh, I aolso did not suddenly get Vitiligo, sorry guess I could have explained that one better, have had Vitiligo since I was 6.. Epilepsy probably since I was born...Hypothyroid Dx about a decade ago when I had a huge Goiter, Now RA, and as of 2yrs ago the Hashi's test still Neg.. hoping this helps..
One deficiency i am well acquainted with is magnesium deficiency. And therefore have done a lot of snooping around online lol. Two articles i cherry picked....
Excerpt the article "Magnesium - it is a Miracle!":
"Composition of Magnesium in Body: 53% in bone, 19% in soft tissue, 27% in muscle, 1% in blood, sweat, fat. Main symptoms of low magnesium: tension (muscle & emotional), tightness - inability to relax, hypersensitive - high strung - on edge.
EFFECT ON MUSCLES & NERVES
* headaches, migraines
* tight sore aching knotted muscles
* backache, shoulder girdle ache, chest pain
* cramps, twitches, spasm,
* inability to sit still, fidgety, restless
* restless leg syndrome, cold hands & feet
* anxiety, agitated, nervy, ready to explode
* panic attacks, irritable, apprehensive, aggressive
* poor attention span & concentration, ADD
EFFECT ON SLEEP
* body jumps on point of going to sleep,
* legs restless & jumping - (wears holes in sheet),
* leg & anal cramps, body rocking,
* grinding teeth, hiccups, lump in throat feeling
* poor breathing, sleep apnoea,
* wake stiff & sore
* feet feel puffy, swollen, sore to walk on on rising
can feel every pebble through shoes or crumb on sheet
EFFECT ON HEART & BLOOD VESSELS
* abnormal heart rhythms, palpitations, racing pulse
* high blood pressure, heart attacks
* poor circulation, purple hands & feet
* tingling, prickly feeling, crawling sensation on skin
* light headed, dizzy, numbness
* muscles seize up in cold due to constriction
* skin sensitivity - sore to touch
* noise sensitivity - TV too loud, lawn mower hurts ears"
Excerpt from Magnesium Library Book: Magnesium, The Nutrient That Could Change Your Life. 7. Epilepsy:
"Wayne was only four years old, but he had been suffering epileptic seizures for 3 1/2 years. Though the seizures were particularly severe during stress periods, he was never completely free of them.
Anticonvulsant drugs were used, but none was successful. The boy's parents were resigned to the probability that he would have a life plagued with severe epilepsy.
At that time Dr. Lewis B. Barnett, head of the Hereford Clinic and Deaf Smith Research Foundation in Hereford, Texas, began a series of experiments. The boy became a subject. He was given, in addition to a normal diet, 450 mg. of magnesium gluconate and a thyroid extract. Within two weeks all signs of epilepsy vanished, and within the past three years there have been no signs of the illness.
Is It Magnesium Deficiency?
In 28 more cases, the same story has been repeated. Children of all ages, stricken with epilepsy failed to respond or responded only slightly to modern drugs and therapy. Placed on high oral doses of magnesium, they experienced stunning improvement.
Barnett did not start out to investigate a relationship between magnesium and epilepsy. He says, "My original work was directed toward the role of magnesium in bone apatite, and while investigating that field, it became obvious that magnesium might play a vital role in the physiology of the central nervous system." He studied the relatively few reports in medical literature concerned with the mineral, and found one by Martin, Meke, and Wertman. These researchers reported that in a state of epilepsy there is a deficiency of magnesium in the blood.
Children who definitely suffered from epilepsy were used in the Hereford study. First, their blood magnesium levels were established. In all cases, the levels were below normal, supporting the findings of Martin, Meke, and Wertman. Next Barnett decided to correct the deficiency by giving oral magnesium preparations. "It was hoped that the magnesium supplement would control the seizures," he told us in an interview.
Within a matter of weeks the blood magnesium level returned to normal, and in every case, except one there was definite clinical improvement.
"After reviewing most of the literature," Mr. Barnett says, "not very extensive according to references, it became obvious to me that very little work had been done in this most important and extremely active mineral--especially in its relation to the physiology of the central nervous system."
In his experiments, Barnett used magnesium gluconate, a form of magnesium which is easily absorbed by the system. 'Taken orally in this form, magnesium is harmless in almost any quantity," he reports. "The worst that can occur is that some individuals will become drowsy."
This tendency toward causing drowsiness is one of the key properties of the mineral."
Try separating other medications from your thyroid med by 4 hours, if you can. This should help keep them from interfering.
You may think I am being tedious here, but which bands on your lyme western blot were positive and which negative? Many doctors (most who are not tick borne disease specialists) still use the CDC banding, which is now considered incorrect by lyme experts and the CDC itself has announced it is NOT appropriate to be used for diagnostic purposes. What this means is that many people are told they do not have lyme disease when they do.
I would also like to very strongly recommend you get yourself tested for bartonella, a very common tick borne infection that has symptoms very similar to Lyme.
The reason I am going on about this is because not only can lyme cause hypothyroidism, but also you comment
"it feels as though I'm walking on rocks, for at least 30 steps, I have to "walk it out" also my joints and tendons hurt, again if I sit for more than 20 minutes, it hurts terribly to walk in my hips and knees!"
Is exactly how lyme patients describe their leg problems.
As you say, it seems VERY strange that you suddenly got Vitiligo, Hypothyroidism but negative for hashi's, Epilepsy and Rheumatoid Arthritis and also low cortisol but negative for Addisons (I think that is what they were looking for in the "adrenal fatigue" test??) - yet lyme disease and bartonella can both cause all those conditions.
Hi, finally got my test results.. the Lymes disease and kidney function all fine, but.. I have RA.. must make appt with a rhumy dr, I am not happy about this new Dx.. I thought to myself (and out loud) "Seriously? the god almighty gives me, Vitiligo,(white spots) Hypothyroidism, Epilepsy.. and now Rheumatoid Arthritis? I know it could be worse.. but really?"
So, I go back to reg. Dr in near 3 weeks to discuss treatment options, as to what works, and what Rxs won't play well with my other Rxs and at some point I'll have to make an appt with a Rheumatologist.
Hopefully, the T3 med will kick in relatively soon and you'll start feeling better. Being hypo can cause both edema and joint pain.
When are the other blood test results due back?
Yes, he did not change my Levoxyl, I was just glad for the inclusion of Cytomel, will try to talk him into upping the dose when I go back next to see him in couple months..
Ht send before I was ready........ meant to ask if you are still on the 75 mcg levoxyl?
Both your FT3 and FT4 are pretty low in the ranges. Good that your doctor ordered the cytomel. Hopefully, that will help alleviate some of your symptoms.
Hi, My Dr.'s nurse called with results, here are my latest labs, reference ranges are same as it's the same lab used just a couple months ago,
FT4 - 1.09
TSH - 1.23
FT3 - 2.85
He did indeed add 5MCG of (generic) Cytomel yay! took my first one this morning.
In mean time, my GP took blood for kidney tests, RA test and Lyme disease test, b/c of my huge amounts of edema and unexplainable very painful joints.. lets just hope it all comes down to not being on correct level of meds..
Hi, Yes twice my Dr. did test for Hashimotos, (b/c I also have Vitiligo, an endocrine auto immune disorder, that cause the body to attack it's own melanin) the tests came up negative.. He also has done (2 yrs ago) an adrenal fatigue test that I had to be in the hospital for several hours for, they took blood every few hours, b/c my initial cortisol test came out low.. but the hospital test came out fine.
Hi, yes, I keep telling my Neurologist that I think the Keppra is interfering with the thyroid med. but according to her and all the "papers" Keppra does not interfere with any thyroid medicines.. yeah right.. she also says keppra does not make you gain weight.. (tell that to the 100's upon 100's of sites with patients complaining of weight gain, or inability to lose weight)
Thank you for commenting, No, the dr did not send me my VitaB levels, just said they were normal, but she does have me taking 50mg/day B6 for carpal Tunnel Syndrome, (I found some online that do not contain soy) although I do not think it's helping, giving more prudence to the thyroid thing being the culprit.
I'm giving him one more chance just b/c finding a thyroid doc here in western suburbs Twin Cities, MN is not easy. went in today, they took blood for the 3 basic thyroid tests (TSH, FT3, FT4) I left message about discussing adding T3, b/c my level of FT3 being barely with-in normal.. I'll get back to you all when I get the results of those tests.. Nicissic, My next Neurologist appt is in a lil over 2 months, at which if these joint symptoms are not better then she will refer me to a Rheumatologist..
I don't know if your thyroid problem is Hasimoto's or not but if it is that is an autoimmune disorder and it is likely if you have one autoimmune disorder you may develop more. I mention this because while I myself had bad joint pain when my TSH levels were 242, they also checked for rheumatoid arthritis which can cause severe joint pain and problems and is also an autoimmune. Doesn't mean you have it but couldn't hurt to check in to it. ; )
Not all medications are compatible, so you might look into compatibility of the Keppra with thyroid medications.
Your FT3 is way too low in the range, so that's probably what's causing the trouble.
What was your B12 level, when you had it tested? I have to keep mine at/near the top of the range, in order to feel well.
You can save some time/energy/money by "pre-interviewing" doctors, before you actually make an appointment. Often if you call the doctor's office and ask to speak to a nurse, you can find out whether or not the doctor tests both FT3 and FT4, *every* time you have blood work, if the doctor is willing to prescribe medication containing a T3 component, such as cytomel or desiccated hormones; and if the patient is treated by symptoms first, labs second. If the answer to any of those questions is "no", that's not going to be the right doctor.
Thank You Barb, this has been a ridiculous and unpleasant challenge, ever since they switched my Dilantin my thyroid symptoms have sky rocketed..
And the search for another doc commences..
Yes, your symptoms could be caused by your thyroid.
Unfortunately, blood tests done in 2010 are totally irrelevant now; even last year's blood tests are too old to be very useful.
That said, it appears that your doctor is going by TSH, rather than the Free T3 and Free T4, plus he believes that just being "in range" is good enough. I'm sorry to say this doctor is going to keep you very ill.
For many/most of us, once we get on thyroid medication, TSH is totally useless for determining thyroid status. TSH varies, radically, even intraday, so trying to adjust meds, based on that is like trying to shoot a moving target.
In order to feel well, many of us have to have Free T3 and Free T4 at a relatively high level. Rule of thumb is to get FT4 to about mid range and FT3 into the upper 1/3 of its range. Of course, that is just a "guideline" and not everyone will feel well, with levels that high.
I don't see how your doctor can say your levels are good, when they haven't been done in at least a year......You should be getting blood work done any time symptoms change...... always be sure to get a copy of your labs and keep them on file. On each of my lab reports, I write the medication(s) and dosage(s) I'm on, as well as any symptoms I might have. My lab reports have become a running record of my progress, or lack of.
Much as I hate to say it, it appears that you may need to find a different doctor, if you want to get well.