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MZZCHIEF's Photo MZZCHIEF Posts: 10,408
5/30/17 2:48 P

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I think you have grounds for a malpractice suit.
It won't solve your problems, but butchers should not practice medicine... others need to be warned so that they don't fall victim to this horrible "doctor".

I think the problem is that you don't have adequate parathyroids to handle your calcium metabolism. I don't have a remedy, but that seems to be a route to pursue.

We had a member here years ago that had hers completely removed.
I don't remember her details, but she was on large doses of calcium.

IMO your problem is beyond the scope of what we can provide here.
I would encourage you to start a malpractice suit, there are plenty of lawyers who will take your case. Not only to punish the doctor, but to provide you with the money you are going to need to pursue a remedy with doctors that may currently be out of your insurance network, and therefore unaffordable.

I would start calling lawyers today.

You have my sympathies.
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Mzzchief

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GIRLINPAIN3 SparkPoints: (15)
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5/17/17 12:15 A

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Hi Mzzchief,

I'm sorry I'm late in responding but I've been so depressed. I've been to a ton of drs in 2 years and if I listed all the "renown" hospitals I went too your mouth would drop. Complete negligence and no remorse for destroying someone's life.

I have always suspected that the surgeon who did a 12+ hour surgery in less than 5 -- probably cut out the parathyroids too. The vocal cords were injured. The surgery was a mess, I hemorrhaged right after. The surgeon left a 3 cm tumor and hide that from me. He refused to give me the pathology report. I never saw him again, he'll NEVER tell me the truth of what happened.

The endos ran labs and said the parathyroids have to still be there, at least one. But that doesn't explain the crazy pain and problems I've had after the surgery.

I literally starved myself for days, no food just 4 liters of waters a day and I gained weight. I don't understand. I gained 35 pounds since the surgery without eating. I had problems swallowing so I was only on Ensure and Glucerna shakes for a year. I don't understand what is happening.

My Endo is happy with my numbers. I went from not suppressed last month with TSH 1.5 to .2 this month. BUT I didn't change my dose of medication-- how is that possible?

And my hair is just gone. I can't look in the mirror.

Can anyone help with info about what to do about the bone pain, weight gain, hair loss.

Can anyone recommend an endo with proven success? If anyone can help, please, please let me know.

MZZCHIEF's Photo MZZCHIEF Posts: 10,408
5/5/17 12:30 A

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hI Girl

First off, I want to say I am so sorry to read about this terrible pain you are having.

Here's my hypothesis... your surgeon may have damaged or removed your PARATHYROID GLANDS when he took out your thyroid.

The parathyroid glands are 4 or more rice sized glands located on the back of your thyroid gland. When the surgeon goes in there and takes out your thyroid, its extremely easy to take the parathyroids with it, bc they are the same color (pink) as the rest of the thyroid, and o so tiny.

If the doctor discovers the parathyroids have been removed, sometimes they will implant them in the upper arm. But sometimes, if the doctor isn't on his game, or doesn't routinely do thyroidectomies, the parathyroids go out with the thyroid tissue. Especially if cancer is involved.

Your parathyroids regulate calcium metabolism in your body.
Which may be why your bones are hurting, why you are getting leg cramps.
Cramping is sometimes caused by an imbalance of calcium in the body.

I would definitely ask a new doctor not associated with your surgeon, to run some tests on you and see if your parathyroids were damaged or removed accidentally.

Just a shot in the dark, but worth a look?

Another idea is that you are lacking B vitamins in your diet.
Burning feet is side effect of lack of B12. Some people have a problem absorbing B12 from food, particularly if they have been on a proton pump inhibitor ( for heartburn, ulcers). Or if they are vegan/vegetarian.

I would get a B12 test, if you're low its easy to fix with shots, and then maintenance with cyanocobalamin (oral B12).

: )
Mzzchief

PS Stop taking the biotin 2-3 days before your thyroid test.
it screws up the test results, giving you a false reading, bc the assay the test uses, is biotin based.
You will be given the wrong dose of thyroid medication.
Incidentally being over medicated on thyroid hormone is just as bad if not worse as being undermedicated.
It can cause osteoporosis, heart attack, cataracts, hair loss, insomnia etc.

Edited by: MZZCHIEF at: 5/5/2017 (00:36)
New decade. Big world.
Hello, 60!
Primum non nocere.

Never underestimate the value of getting out of your own way.

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WHOLEGRAIN7 Posts: 63
4/29/17 2:04 P

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Hi, again. I do think there is a doctor out there who can help you, but you just haven't found him or her, yet. If you were around the Los Angeles, California area, I'd know right where to send you....where you'd have a good shot of getting some real help. If you're somewhere
different, I do know where you could get a good list of doctors who're supposed to be better at treating harder cases, and thyroid in general.

There's a really good website called, "Hypothyroid Mom"--she has a Facebook page, too.
She had a story not that long ago about an actress named Gina Lee Nolan who was on
"Baywatch,"....she has thyroid, too, and a website of her own about it. On Gina's website, there was a list of really good doctors....some of the names I was familiar with, and I know they're supposed to be pretty good. Maybe we can find you someone better through that
list.....Mary Shomon is another lady with a thyroid website & Facebook page. Her doctor list isn't as good as the first one I mentioned, but you can learn a lot of good information from her sites. Hang in there....maybe we can get you some better help, yet. Wholegrain7

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4/29/17 12:37 A

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Hi Wholegrain 7,
Yes, I've tried selenium and zinc. Also made things immediately worse. I've tried every thyroid preparation-- there aren't many. All these so called experts told me that this was a great cancer. What a lie. There is no great cancer. My surgery was the biggest mistake of my life, I should have just let it go. These same doctors missed my cancer for 10 years, it is an aggressive metastatic mess that spread outside the lymp nodes.

I'm afraid to switch or start all over again with another drug. It takes me forever to get use to one brand and my hair is almost gone. I had the nicest hair before this thyroid medication.

This isn't living. I hoping someone could provide some info. I just can't take this pain.

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4/29/17 12:30 A

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Hi,

Thanks for your response. I not only took Magnesium but took it in a liquid form 2:1 ratio to Calcium. The pain only got worse. I don't know what do, the pain is horrific and no doctor wants to take this case. I've been passed around from every specialist nothing is being done. I'm up now in horrible pain. My endocrine said it can't be related but I never had a problem until my thyroid was cut out. And oncology doesn't want to take a metastatic thyroid patient.

I don't know what to do.

WHOLEGRAIN7 Posts: 63
4/28/17 10:41 P

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Hi--I'm sorry you're going through all this! I've been through a lot of stuff because of
thyroid, and I do have to say that if you've noticed the jaw/face/bone pain started once
you began the WP medicine, then it could be the WP medicine itself is causing it--and
maybe they could switch you onto Armour (if you want to stick with natural medicine),
as that is made by a different manufacturer....so, although it's the same sort of drug,
it might work on you differently (because of different fillers, etc), than the WP. Maybe
it would be better.......if not, there are other synthetic drugs (and combinations of them)
that you could try. You need to work with a thyroid doc who is flexible about this sort of thing.

How do I know this? Because I have a big problem with the thyroid drugs, too, ever
since Synthroid changed formulas many years ago. I've been on lots of them, since,
and I'm currently working with the WP medicine, as well. We're still adjusting my
doses, so I can't say how it'll work out. I do know that WP is supposed to be more
"pure" than some of the other drugs (less fillers, etc). However, everyone is different
and some will respond to it better than others........maybe something would help you
better. I know some would say that maybe your dose of WP needs adjusting, but
honestly, if you noticed these new problems soon after starting the drug, maybe the
drug itself is causing it--no matter the dose--and you just need to go onto something else.

I've been on Tirosint, too, and so many other drugs. Some can claim these drugs are
the best thing ever....and maybe for them, it is. But when you notice some weird symptoms
starting up soon after beginning a new thyroid drug....it could very well be the drug
causing it, and it's time to go to a new one. And if a doctor says "it's all in your head--
couldn't be the drug," then it's time to get a new doctor, too. As I've had to do, for sure!

A couple of other things--the other poster mentioned magnesium. My current doctor,
who actually is pretty smart and keeps up with research--says the best form of it
is magnesium glycinate........it's better absorbed, and you shouldn't have so much
side-effects with it, if you should take it (he also recommended 400 mcg. for my
particular reasons.....you could talk to your doctor about it---I wouldn't get the Solaray
brand, though, because I did some research and found it may have more arsenic in it
than it's supposed to....(yuck! And after I'd gone through two bottles of it!). Another thing--
You may have tried the selenium pills, but instead, maybe try a Brazil nut or two per day?
They are rich in selenium, and you're not supposed to eat more than one or two, because
of this....but I do notice the nuts seem to help me more like a good thyroid medicine should,
sometimes, and I never got that effect from the brief time I took selenium supplements.
Maybe you can't handle any selenium like this at all right now--I don't really know....ugh!

Good luck to you....I know it's hard to go through this! Feel better, soon. Wholegrain7

YIGOBUTTERFLY's Photo YIGOBUTTERFLY SparkPoints: (264,239)
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4/26/17 7:31 A

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You may want to check some of MZZCHIEF's blogs and comments. She is not on as often as she was but is a wealth of information.

Jane on Guam



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DJ4HEALTH's Photo DJ4HEALTH Posts: 71,018
4/25/17 11:06 P

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Have you tried Magnesium? You need at least 400 or more a day but be careful because it will give you the runs if you get to much but you can decide how much you need by that too. Take until you get there then back off until the runs go away. That is what I do.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley

For the Lord Himself will descend from heaven with a shout, with the voice of an archangel, and with the trumpet of God. And the dead in
GIRLINPAIN3 SparkPoints: (15)
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4/25/17 2:48 P

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Hi,
I just joined this group and was hoping there were some thyroid patients here.
I had my thyroid removed 2 1/2 years ago b/c of my cancer and I wished I never had the surgery. After my thyroid was removed I had to go on thyroid medication. That's when the problems began.
I gain 20 pounds instantly after the surgery and I was on a liquid diet since I couldn't chew. The problems are weight gain, hair loss and bone/feet pain that's now in my jaw.

I was on straight cytomel after the surgery until my first endo appointment.
Then was placed on Synthyroid 125 mcg to 175mcg for 1 year and 1/2. Was on Tirosint 200 mcg for 6+months. Feet pain was so bad, just couldn't walk. Horrible muscle cramping. Tried D3 and Calcium supplements and multivitamins, biotin since surgery. Nothing helped. Been on WP thyroid since September and interestingly that's when my jaw/face/bone pain started. Doctor's said the WP thyroid didn't cause it (but obviously all of my symptoms are fall out from the thyroid surgery). I never had any of these problems before.

My T3 was low and someone suggested a dissectated thyroid med to get T3 up. They said increased T3 will get rid of my pain. Not true. My hair has gotten so much worse since Sept.

In Feb my labs were:
TSH .64
T3 2.4
T4 .8

In March labs were:
TSH 1.5
T3 2.3
t4 .4

And I increased my dose of WP thyroid from Feb. I was on 166 mg in January, I was just screaming in pain. Dropped to 145 mg in Feb, then increased to 154 mg in Mar. (130mg.+16.25. 16.25/2)

I tried Selenium and Zinc and that makes the pain so much worse.

Has anyone had this problem? Or know what to do?

I'm not familiar with sick euthyroid or RT3 or RT4. I don't understand most of the medical jargon which the endo doesn't explain. And no oncologist wants to help, since this should be dealt by endos.

In pain and losing so much time.

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