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Avatar universal

Desperate, need questions answered, please help

I was on this forum before, but since then, my computer crashed and I lost all information.  Let me just be brief, I am 4'11" tall and right now, I am 215 lbs. and still gaining.

I have been to literally at least 15 doctors, and even got kicked out the the University of Colorado Endo clinic for raising such a fuss.  

I have never in my life been overweight, never been on a diet, never had to diet, but I feel that this obesity will kill me.  I now have three crushed discs in my back, am on oxygen because this weight is exacerebating my asthma, have severe sleep apnea, am a diabetic, and can barely walk as I'm not used to carrying this kind of weight.

Let me tell you, I don't sit around and eat all day, and I USED to be extremely active, now I can barely do anything.

When this started, I was diagnosed with hypothyroidism and the beginnings of menopause.  Then, I started to balloon out from a size 4 to a size 18, and I'm still growing.

Recently, I went to a diabetic dietition and a diabetic nurse, and they FINALLY agreed with me in that no one could gaing this amount of weight and just keep going like I'm doing, especially in a matter of a couple of years and not being as active as I was.  I went on a calorie, fat, sodium, and carb counting diet and I come no where NEAR what was given me for my caloric intake for the day, and my dietition was shocked, I should absolutely not be this heavy.

My dilemma is that I can no longer work as I've blown out both of my knee's, and I'm looking at surgery on my back, therefore I'm on disability, which basically means I'm poor!  I don't know of any doctors here that will take my insurance and that is aggressive enough with testing to find the underlying problem.  I DO NOT have high cortisol, although they never went as far as to tell me if I had intermittant Cushings.  But, the doctor I had at University DIDN'T BELIEVE in Hashimoto's, she said that if you have hypothyroidism, you have Hashimoto's, therefore, there was no need to check.

I found two doctors that are questionable as they want cash up front and one is a licensed chiropractor, but like I said, I'm desperate.  The one doctors name is Dr. Credeur at the Functional Endocrinology Center of Colorado, and he is a D.O., and the other one is Dr. John D. Erickson, licensed chiropractor.  DOES ANYONE KNOW ANYTHING ABOUT THESE GUYS?  I don't want to sell my car to pay for this unless I know they are reputable.  Also, does anyone know of a doctor here that will help me?  I'm at the end of my rope and I told the diabetic nurse that I have just given up.

Any help would be appreciated.
Best Answer
Avatar universal
I I agree with izatu...this IS a new one.  Usually doctors test FT4 and TSH, and many of them don't believe in FT3.  However, trading one set of incomplete labs for another is not acceptable, either.  You need a complete set of tests...FT3, FT4 and TSH (all done on the same blood draw) ASAP.

You're symptoms indicate that you are extremely hypo, probably made worse by the low ferritin.  I also agree with SwanSong that B12 would be worth testing.  When I was hypo, I fell asleep anywhere I sat down...in the car (riding), in front of my computer...never on my feet, but that was the only exception!  Don't drive...your doctors are right...it's extremely dangerous at the moment.

I'm sure that your thyroid meds need to be adjusted.  If your FT4 is not midrange or above, you might be able to increase levo and see a big improvement.  However, if FT4 is midrange or above, yet your FT3 still remains low, you might have to add Cytomel.  

Losing weight is almost impossible until your meds are adjusted properly.  Write your symptoms down (so you don't forget anything) when you see your doctor.  Get a copy of the lab reports from any tests they run.  

Do you know if you have Hashi's?  If not, your new doctor should also test thyroid peroxidase antibody (TPOab) and thyroglobulin antibody (TGab).

There are good doctors out there...don't give up until you feel well.  Start with the proper testing.
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Avatar universal
Thank you all so much, this has been a wealth of information!  No, this doctor said she doesn't believe in testing for Hashi, said it was a "scholarly diagnosis" as everyone that has hypothyroidism also has Hashi's, so what would be the point?

The whole problem with all of this is that I'VE BEEN TO ABOUT 10 doctors and they just don'w want to test!!!  But, I think what SwanSong said about going in and not saying that my first concern is weight, and list my OTHER symptoms first would help alot as it's true, doctors tend to think if you have a weight problem, it's usually your fault.  I'm gonna try a new strategy.

They did do a 24 cortisol test, and it said it was normal, but this doctor also said that I could have something called, "Intermittant Cushing's," but it is extremely hard to find and there is nothing they can do about it anyway!  Like I said in my other post, I researched this and brought in reems of paperwork on treatments for this disease, and she didn't even want to look at them and acted "put off."

I copied these posts you guys have answered and I'm also taking them with me when I go.  Luckily, I went to see a dietition and a diabetes nurse, and they both agreed with me about the weight gain, they also wrote that in their notes to the new doctor I'm about to see, so that is in my favor, so there might actually be a light at the end of the tunnel.

I really appreciate what was said about not taking a multi with the levo, because no one told me that.  I will do that immediately.

Actually, what is REALLY in my favor is the fact that when the diabetic nurse was talking to me, I fell asleep in the chair listening to her!!!  She asked me if I was alright and I told her that this had been going on for a couple of months and I'm not supposed to drive, especially since I ran off the highway at about 70!  It is truly a miracle that I didn't crash and I'm still here.

I will definitely keep everyone informed, I am seeing this dietition and nurse on Monday, and I'm going to ask them about all of this, and I will see this new doctor at the beginning of December.  Thanks everybody, and I am writing down my symptoms now.
Helpful - 0
263988 tn?1281954296
Make sure you also don't take multivitamins and calcium within four hours of taking thyroid medicine. I've read you can take B12 after an hour. It's water soluble.

Have you had a Vitamin B12 level done?

Many thyroid disease sufferers also have a B12 deficiency. You might want to check your folate level as well.

I was extremely fatigued this last summer. I'd sit down, try to read something, and crash. My nap was as if I was unconscious. I very rarely do that now as I am on B12 supplements.

How long have you been *stabilized* on thyroid medication? It takes six months to a year get to that status. However, that means your dose is unchanging during that time. Until you are stable you won't lose weight.

Believe me I do understand your frustration about weight gain. There's the equivalent of two people in my body. UGH! I hate it. There's nothing I can do about it until my thyroid is stabilized and it hasn't been since I was diagnosed seven years ago.

Have you been tested for Cushings Syndrome? It's a cortisol test, one is a 24 urine test.

I sure hope you find a doctor who knows what they're doing.

I went through 1 endo and eleven doctors before I found a great endo. I can tell him I'm symptoms again and he doesn't roll his eyes or ignore me or brush me off. He listens and tests me again. My thyroid is failing then working then failing then working (repeat) and it *****.
Helpful - 0
Avatar universal
I don't know much about thyroid problems, but my mom was recently told that her thyroid levels were high. My mother in law has been a nurse for over 25 years so I called her to ask her about it. She told me to make sure and tell my mom that when she takes the medicine for her thyroid to take it first thing w/ water in the morning by itself, and not to eat or drink nothing for about 45 mins to an hour. She said if you don't the medicine won't break down right and absorb as good, if you have food or other medicine's on your stomach, and therefore will not be nearly as effective at all. So, I hope that might help you if you've not already been told this. Good Luck, I sinserely hope you feel better!!!
Helpful - 0
Avatar universal
my advice would be to get another doctor. With medicare/medicaid you should have other options. I know you do not want to hear this, but I would get another doc. do some on line research, etc.

second, when you go in to see your doctor, do not mention weight as your primary concern. I have learned over a lot of horrible doctors that if weight gain and depression are your primary concerns, they tend to blow you off.

mention your other symptoms as primary concern. weight as secondary.

this is a new one - a doc who does not take TSH and FT4, but takes FT3. my docs is the exact opposite.

hate them all.
Helpful - 0
Avatar universal
Here is the last THS test they did:

TSH-0.57  reference range is 0.50-5.00
That's all I have.
Helpful - 0
Avatar universal
This doctor said she "doesn't do" T4, it's irrelevant, and I don't remember getting a TSH, and those are all the tests they did.

Right now, I have doctors orders that I AM NOT ALLOWED TO DRIVE!  This is the clincher, I have severe insomnia, I NEVER sleep, yet in the past 5-6 months, I fall asleep sitting up while people are talking to me!  I actually fell asleep at the wheel and ran off of the highway doing about 70, it's a miracle I didn't flip or kill someone else.  Yes, I am so fatigued that I can no longer drive.

Evidently, they are seeing this about the T3 because they have no idea why I'm falling asleep like this.  They do know that my Ferritin is low but aren't doing anything right now as they want to get some labs and are waiting for those.  She thinks it could be a "bleed."

As I said, I can't keep awake, I have severe depression now, I barely have eyebrows, they have all come out, and I do have constipation and extreme dizziness on occasion.

They wanted to start me on an antidepressant, but I wouldn't do it, I am on so many drugs now!  I do take one 65 ml of iron supplement, but nothing has been adjusted.

As I said, they keep treating the symptoms, not finding the problem, thanks for your input.  I will copy this post and take it with me to A NEW DOCTOR on Monday, and pray!
Helpful - 0
Avatar universal
The only thyroid test on there is FT3 (expressed as T3F on your list).  Did they test FT4 and TSH as well?  FT3, FT4 and TSH are a basic thyroid panel, and since you are on meds, should be being monitored at least annually once your meds are very stable.  If meds changes are made, levels should be monitored as often as 4-6 weeks.

Many of us find that FT3 has to be in the upper half to upper third of the range before symptoms are relieved.  If enough T3 is not available, metabolism slows, and it's almost impossible to lose weight.  Your FT3 is in the bottom third of the range...too low for most of us.

Not having seen FT4 and TSH, I can speculate on two possible causes.  1 - Your FT4 is also low in the range, which might mean you just need to increase your levo.  2 - Your FT4 is midrange or higher, which would indicate you are not converting T4 to T3 well.  In this case you might have to add a direct source of T3 to your meds (i.e. Cytomel or dessicated).

Do you have other hypo symptoms...fatigue and/or drowsiness, constipation, dry skin, hair loss, etc?  You can google symptoms for a complete list.

Your ferritin is low.  Has your doctor started you on a supplement?  Ferritin is often an issue with us hypos.
Helpful - 0
Avatar universal
In answer to your question, Nelcida23, I do have health insurance, but it is Medicare and Medicaid, since I am not working now.

Here are some of the results that I last KNOW OF, they don't usually test it regularly, and the dosage that I'm taking of levo is 88mcg once a day.

I should tell you that they are always finding these radical things when they do blood work but then they do a more in depth blood work, and these things they find end up not being true, that REALLY gets me upset, like they don't have a clue what they are doing.

They told me they found something wrong with my pituitary, then they did a scan and said it's ok.  Then they told me I had hemochromatosis, so they did more blood work and told me it' s ok.  Then they told me I had a heart problem, so they did all these tests for my heart and said, "oops, I was wrong."  Then, they said that I was diabetic, three times!  and then they said I wasn't, I'm going through my fourth round now.  So then they told me just recently that I had a small heart attack within the last few months, but I took the EKG in and "they" said it was misread!  I don't know whether to scratch or sniff anymore!!!

I don't exactly know what all these tests mean, so some might be irrelevant:
TOT IBC units mcg/dl-reference range is 210-390, mine is 568 (H)
FESAT units %, reference range 15-60, mine is 8(L)
UIBC units mcg/dl-reference range is 110-370, mine is 523 (H)
TRANSFERR units mg/dl, reference range is 192-382, mine is 406 (H)
PTH, units pg/ml, reference range is 12-88, mine is 19*
LTROPI units nr/mL, reference range is 0.00-0.05, mine is 0.00*
WBC/HPF, reference range is 0-5/HPF, mine is 0-5
A1C, units %, reference range is 4.0-6.0, mine is 6.2
EST AV GLU, units mg/dL, reference range is (?), mine is 182.9*
ANA, reference range NEGATIVE, mine is NEGATIVE
ANTICENT, reference range is NEGATIVE, mine is NEGATIVE
T3F, units pg/mL, reference range is 2.3-4.2, mine is 2.9
NA, units mmol/L, reference range is 133-145, mine is 139
K, units mmol/L, reference range is 3.3-5.0, mine is 4.0
CL, mmol/L, reference range is 101-111, mine is 107
CO2, mmol/L, reference range is 22-32, mine is 24
GLU R, mg/dL, reference range is 70-199, mine is 142
BUN, mg/dL, reference range is 6-23, mine is 17
CREAT, mg/dL, reference range is 0.40-1.20, mine is 0.76*
CALCIUM, mg/dL, reference range is 8.5-10.3, mine is 9.4
IRON, mcg/dL, reference range is 30-160, mine is 45
TOT IBC, mcg/dL, reference range is 210-390, mine is 568 (H)
FESAT, %, reference range is 15-60, mine is 8 (L)
UIBC, mcg/dL, reference range is 10-370, mine is 523 (H)
TRANSFERR, mg/dL, reference range is 192-382, mine is 406 (H)
FERRITIN, mg/mL, reference range is 10-388, mine is 14 (L)
Helpful - 0
1495281 tn?1305307348
sorry to hear about what you are going through at this time. i wish you would have lived in Connecticut since i would have tried to reach out to you and help you to find some help. anyways where you live they dont offer emergency health insurance? i know here in Connecticut if you  dont have the funds available for your treatment many charities help to pay for it and to get the insurance from the government
Helpful - 0
Avatar universal
Before you sell your car, let's take a look at some other much less costly alternatives.  It sounds to me like your thyroid meds may not be adjusted properly and that you are still hypo despite taking them.  Do you have other hypo symptoms besides weight gain/inability to lose weight?

What thyroid tests does your doctor regularly run?  Is she testing free T3, free T4 and TSH?  If so, please post your recent results along with reference ranges.  Ranges vary from lab to lab and have to come from your own lab report.  If your doctor is not treating you properly, trust me, there are other doctors who will.  They are a bit of a challenge to find, but they're out there.

What's your dose of levo?

To some extent, your doctor has a point, although I do not agree with her.  Many doctors feel that Hashi's is treated the same as hypo of any other cause, so why spend the money testing for it?  I don't agree...there are lots of other reasons that this is valuable information.  However, as far as traditional medicine is concerned, it is extraneous information as far as treating hypo is concerned.  Hashi's is the most prevalent cause of hypo in the developed world, so the chances are good that Hashi's is the cause of yours.

There's a protocol in the chiropractic community that many are following in an effort to treat Hashi's.  I've read a fair amount about it, and I remain very skeptical.  I think it may be an alternative for people who have exhausted all other avenues of therapy, but I'd certainly make sure that they were all exhaused before starting on what I believe is a very expensive protocol and most likely of limited effectiveness in treating the disease.

Post what lab results you have, and we'll go from there...
Helpful - 0
Avatar universal
Exactly what I was thinking, these doctors seem almost too good to be true!  I am hypo and I'm on levothyroxine.  They've done the standard thyroid tests and actually did a scan of my pituitary and checked cortisol levels.   All they EVER tell me is that my thyroid "looks good."  But I know that many times your thyroid can look good but you can still have the symptoms and further investigation needs be done.  I CAN'T GET ANYONE TO DO THEM!  

I have been literally KICKED OUT of the University Hospital for raising such a fuss, I am so angry that no one will listen or do anything.  She told me I could have "intermittant Cushing's disease" and she started with me pee'ing in a bottle, but she only took ONE BOTTLE and never even finished the test!  Then, she said, "you probably don't have it anyway, it's pretty rare and there's nothing you can do about it anyway."  I brought in REEMS of paperwork I researched about what treatments can be done for this disease, and she completely ignored them and me and acted PUT OFF!

Then, she told me that "Hashimoto's was just an academic diagnosis" as anyone that has thyroid issues has Hashimoto's, so why add extra expense to find the obvious!!!

Trust me on this, SHE ISN'T THE ONLY ONE!  So, telling me to go to another doctor is pointless, I've been to them, I just don't know what to do anymore, I'm now on oxygen to breathe!  And I used to competition water ski!
Helpful - 0
Avatar universal
Wow, I am so sorry for all the mess you have gone through. From here you can only go up. I haven't heard of these doctors, and since you have limited funds I wouldn't be shelling out money to  a chiropractor, especially since whatever they do will be a quick temporary fix, if that even. You haven't mentioned if you are currently hypo or if you are on thyroid meds. Have the doctors run all possible tests?
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