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I need some Help.. pretty desperate.. Doc told me to stop taking my thyroid meds

I have been having an awful time getting adjusted to thyroid medicine.. in 2015 I was diagnosed w/ hypothyroidism w/ a TSH at 16.. was put on 50mcg of levothyroxine in the ER.. stayed on that for a year but never felt much better.. found a new PCP in Oct 2017 she put me on 16.25mcg of Nature throid.. I did well and increased it to 32.5 mcg & felt at my best.. then they changed the formula.. w/ the new prescription my TSH went up to 6.35.. was switched to NP thyroid & since then I've had severe heart palps/shortness of breath/high anxiety... I had to find a new PCP& she took me off the NDT b/c she said it may be because i can't tolerate T3..for the last week I have been on 25mg of gluten free levothyroxine (generic) .... I NOW have no energy, nausea, joint pains but the emotional part of it (anxiety) is through the roof... I've had continuous panic attacks for 2 days...this morning I took the 25 mcg of levothyroxine & the panic attacks/stress/agitation got much worse so I took 1/4 of a 15 mg NP thyroid pill for the T3's thinking this may help---that maybe my body was missing the T3 I stopped abruptly.. I called the dox office & she said since I'm on the lowest dose to stop taking it... I am scared... I literally feel like I'm dying.. my current levels as of 11/10/18:

TSH: 3.39 (.45-4.5)
FreeT3: 2.80 (2.0-4.4)
FreeT4: 1.12 (.82-1.77)
RT3: 8.5 (9.2-24.10)
Iron is slightly low at 75 (27-155) but Ferritin is high at 112 so doc said no to iron supplements

I can't live like this... I've been trying so hard.. I have been gluten/soy/dairy/oil/corn free for 1.5 yrs.. I drink only water.. I do not smoke.. I do not drink.. I'm scared.. I've seen 3 PCP's, 1 endo & none of them have helped me.. I've also paid A LOT of money for an integrative doctor that just seems to want to keep running tests to the tune of $1,000's of dollars out of pocket & can't prescribe anyway so, I'm done w/ him...

Can anyone PLEASE give me some ideas? I am 110lbs.. I am extraordinarily sensitive to meds & herbs.. I don't know what do do..
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Avatar universal
There is a lot to discuss, but first, please have a look at this list of symptoms and tell us which ones you have, if any.

    Mental and psychological ailments such as depression
    Faintness and dizziness
    Weakness and fatigue
    Heart palpitations
    Emotional hypersensitivity
    Inability to cope with stress
    Social anxiety
    Muscle weakness
    Headache, scalp ache, or general body ache
    Severe or dull lower back pain
    Extremely sensitive skin
    Nausea, diarrhea, and vomiting
    Abdominal pain and hunger pain despite an empty stomach
    Extreme craving for salty foods
    Anxiety and jitters
    Clumsiness and confusion
    Motion sickness
    Insomnia and dark circles under the eyes
    Low bladder capacity and symptoms of IBS
    Irregular or non-existent menstrual period
    Hypersensitivity to pain, light, noise
Helpful - 0
8 Comments
I have not been clinically diagnosed as depressed but I feel like I fit the criteria.. dizziness not often but has happened.. weakness & fatigue YES.. Heart Palps YES....Emotional hypersensitivity YES!! Inability to cope w/ stress YES!! ...always have had social anxiety.. muscle weakness-not really, just weak...headache-YES...severe lower back pain YES and Kidney stones history... Sensitive skin--No.... nausea-just lately.... hunger pains & abdominal YES!!!... Salty food--small yes... Anxious--THIs IS THE WORST... confused-YES..... Insomnia & dark circles--This is a BIG one too... Low bladder.. yes, I pee at least 4-5x a night.... Hypersensitivity--yes, i startle easy and can't recover very quick.. light & noise bother me... so, 90% of that above is a yes...
Of course you will have to take care of thyroid issues; however, even the ATA/AACE recommends taking care of any cortisol issue before starting on thyroid med.  The list of symptoms I gave you, which you seem to have a lot of, are all related to hypocortisolism.

You need to  take this info and get tested for cortisol.  Doctors usually will only order a morning serum cortisol (total cortisol) which is not nearly as useful as a diurnal saliva cortisol (free cortisol) panel of 4 tests from different times of the day.If it were me I would try to get your doctor to order the saliva cortisol tests.  If no success with that, then at least try to get the morning serum cortisol test and see if it is low enough to get your doctor to do anything about it.  Unfortunately the reference range is so broad and skewed to the low end that even if too low, it might still be in the lower end of the range.   that is when you have to strongly emphasize symptoms.   If unable to get the doctor to order the saliva tests, then you may have to resort to ordering an online kit with which to do the saliva tests.  Cost is about $145.  If you need to pursue that, we can give you some good links.  
I see a new endo on Dec 5th.. I also had an appt w/ a new integrative doctor (one that can prescribe) on Dec 28 but got a phone call late this evening that she can see me the same day as the endo... so, I'm kinda wondering which way I should go.. I don't know this endo... and the integrative doctor has hashimoto's and this is her specialty ... however, she is $500 & the endo is through insurance.. anyway, I have used Ultalabs which is right around the corner from my home to test my thyroid when the PCP would not... I can use them for the saliva test.. the integrative dox also said i can bring all my labs so i won't have to repay for them again... which is great.. I also get a 1 on 1 with her for 2 hours... my husband said he'd pay for it to see what she has to say.. hoping beyond hope I can get some help from her.... I've got the shakes really bad tonight.. a right hand tremor.. all these weird symptoms are new since i stopped the NDT's a week ago.. I really think stopping meds w/ a T3 so dramatically has really screwed up my whole body... and yes, I agree... I have 90% of the symptoms above and my adrenals are probably taking a beating... I've also had month of 2 deaths.. one was a very traumatic ending (from cancer) & one of my best friends I've known for 32 years the other was my beloved cat that suddenly got sick & we brought him to the vet's and they had to put him to sleep... BUT I know the difference between grief's anxiety & uncontrollable anxiety caused by something other than a traumatic event--this just starts like an earthquake & keeps getting worse-I wake up and immediately get panic attacks.. and it is horrible.. I have to admit, this is the worst I've ever felt in my entire life-physically, mentally & emotionally.. I feel like I'm really sick.. and even though I've never been a drinker/drug user ..i feel like I'm drunk & fighting to remain 'normal'... like being put under anesthesia but fighting  from it... I hope that makes sense...  and THANK YOU for taking the time to help me.. it means so much..
Since you have a bit of time before seeing either doctor, I think I would push to get the saliva cortisol panel done and see where that leads.    If it turns out your cortisol is low in the range, then the prime concern would seem to me to find out which doctor is most likely to understand how to diagnose and treat hypocortisolism.  Also, when it comes to treatment of hypothyroidism there are few doctors who understand that hypothyroidism must be treated based on symptoms first, and FT3 and FT4 levels second.   A hypothyroid patient should be given enough thyroid med to eliminate signs and symptoms of hypothyroidism, without creating any signs or symptoms of hyperthyroidism.  That sweet spot is called euthyroidism.

If you will tell us your location, perhaps we can improve the likelihood of  you having a good doctor and receiving adequate treatment by suggesting doctors that have been recommended by other patients.
I am in Yorkville, Illinois
You need magnesium. I have had mild to severe magnesium deficiency. My cat died too and the stress hit me hard and I had full body seizures through the night. I was already very low in magnesium to start with due to insulin resistance. The symptoms of magnesium deficiency are very long. Having to pee numerous times through the night, light and noise sensitivity, anxiety, insomnia...it's a long list.

Excerpt from Ancient Mineral: "Do You Need More Magnesium? 10 Signs to Watch For"...

"3. Do you experience a lot of stress in your life, or have you recently had a major medical procedure such as surgery?

Stress can be a cause of magnesium deficiency, and a lack of magnesium tends to magnify the stress reaction, worsening the problem. In studies, adrenaline and cortisol, byproducts of the “fight or flight” reaction associated with stress and anxiety, were associated with decreased magnesium. 10

Because stressful conditions require more magnesium use by the body, all such conditions may lead to deficiency, including both psychological and physical forms of stress such as surgery, burns, and chronic disease."
Sending you a PM with info.  To access, click on my name and then from your personal page, click on messages.  
Thank you.. I've tried taking magnesium but it makes me feel worse.. I have an extremely sensitive stomach & it burns a lot! I'm working on that part too but, getting appts are months out.. it's frustrating..
1756321 tn?1547095325
Maybe switch to tirosint. I found this of interest on the reviews...

"Great medication for those who have absorption issues (Celiac, diary intolerances, etc) and no T3 conversion problems. On that note, you will find that a specific dose of Tirosint will feel much higher than that same dose in regular Levothyroxine, for example. As a gel cap with no fillers, more medication is able to absorb into your system. Start with a much lower dose than you think you need and work your way up. Over the past 10 years I've tried Armour Thyroid, NP Thyroid, NatureThroid, Levothyroxine, & Synthroid. With all the other medications, I always felt like I was constantly increasing my dose. At one point, I was on 200mcg of levothyroxine. I'm now taking 25mcg of Tirosint 5-6 days a week. My levels have never been as "steady" as they are with Tirosint, and it's nice to know I only need a small dose of it as opposed to depending on such a large dose on a daily basis. The only downside is the price, but it makes a world of difference."
  
10
Vanna August 8, 2018"
Helpful - 0
6 Comments
I asked for Tirosint to begin with and my insurance denied it 3 times.. they also denied unithroid.. I have tested positive for Celiacs but no doctor has yet to help me with it.. but, I did cut out all dairy,soy,oils,corn,gluten... Tirosint is over $120+/month.. which is a bit out of my budget..
I feel for you. I suffered something awful with all of the same issues you mentioned and not once in 4+ years that I had panic attacks so severe I couldnt drive or function like a human did my doctor ever mention thyroid issues and never heard of hypocortisolism until now...hmm ...doctors stink.
I'm def feeling for you.. this is pretty rough.. I feel like I'm detoxing from drugs or something.. doctors do stink & I'm pretty much at my wits end.. I feel awful & so sick all over... I'm tired of this
$120 a month is pretty steep! I am on Eutroxsig and it costs $5.90 for 200 tablets.
Yes, I was surprised when I went to the pharmacy & they asked that much.. looked on the internet too & it's all about the same.. I use some very off brand generic gluten free levothyroxine.. I have definitely not reacted to it well or the change from NDT to generic has not gone well at all... I guess I should've weaned off the T3 but, as usual, no one told me.. I've added a small portion of my NDT back in.. hoping it helps until I can see a doctor... I feel so horrible though I've been contemplating the ER but figure they'd have no clue... I've never felt this bad in my entire life... I hope it gets better...
You sound very sensitive to medications. With the magnesium you might find different type of magnesium are better and also try taking with food.
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