Thyroid Disease Forum banner

1 - 15 of 15 Posts

·
Registered
Joined
·
64 Posts
Discussion Starter · #1 ·
I'm so frustrated & scared at the same time.. I've been dealing w/ Hashimoto's/Thyroid for 3.5 years.. I have not been able to get stable on a thyroid medication except the old Nature Throid.. I have tried titrating up from the smallest dose at 15mg of NP thyroid but cannot go higher, if I do.. I get heart palps & shortness of breath..

My endo suggests I go off medication for a month to basically get a base-line.. but, since my TSH is climbing I'm inclined to believe he's nuts..

I am seeing a functional medicine doctor.. she did tests and told me my adrenals are very low... thus, it may be the reason i cannot tolerate titrating up on thyroid meds

Currently, I am taking 15mg of NP in the morning and 7.5mg of NP in the afternoon.. I do get palps but I can deal w/ them although I wish I didn't have to

Here's the biggie that scares me though...

In November (week before Thanksgiving/before my appt to see the functional med dox) I told my regular my regular PCP that I get palps when trying to raise my thyroid meds.. she suggested I go with a T4 only at 25 mcg and they prescribed some form of generic gluten-free levo.. LET ME TELL YOU WHAT.. I had the worst time.. within days I started getting every single symptom of hyperthyroidism imaginable.. the worst was the anxiety & panic attacks... to the point I tried to hurt myself b/c I couldn't take it.. yes, I know it sounds extreme but, I couldn't control anything.. I threw up, lost so much weight I was down to 106lbs.. the brain fog was incredible.. my eyes were blurry.. I couldn't control my bladder.. my husband was so worried he took me to the ER... even though I told them I had no prior history to anxiety.. no trauma/ no emotional problems but had switched thyroid meds they classified it as anxiety only.. they took no thyroid labs & treated my like a crazy person..

I stopped the Levo and went back on the NP thyroid and added buspirone b/c I can't tolerate any SSRI's either..

I started to climb out of that black hole although the Holidays were a blur & I still have residual high anxiety & panic attacks.. my functional Med doc told me to try the Levo again and prescribed Synthroid this time.. 25mcg and I took it yesterday morning & THE SAME THING HAPPENED... it took me right back to square one... all the progress I made was gone.. now, I'm left w/ blurry vision, brain fog, hyper-sensitive to everything, crying, anxiety & severe panic attacks..

I literally at a loss...

I know my adrenals are low.. but my endo refuses to acknowledge I have an adrenal problem and suggested I'm just "out of shape".. after telling him what I've been through he still insists I go off my thyroid medication..

My labs came in on 1/8/19.. (I had to pay for them myself)

TSH: 4.05 (0.4-4.5)

FT3: 2.7 (2.3 - 4.2)

FT4: 1.2 (0.8 - 1.8)

Yes, i know my body is screaming for more med.. but, when i titrate up.. on comes the panic, extreme anxiety, shortness of breath & heart palps..

Would you think it was my adrenals? My DHEA is at 413 (19-231)

My B12 is fine at 675 (200- 1100)

My Vitamin D is at the low end of the range 32 (30-90)

Can low Vit D cause all this?

My functional med dox has supplied me so MANY herbs/pills.. I have a hard time choking it all down all day.. seems all I'm doing is taking pills around the clock.. I haven't gotten my adrenal support herbs in yet either..

I feel like I'm dying.. no joke.. I'm trying so hard to do everything right.. gluten free/dairy free/soy/oils/corn.. and yes, that has made a difference.. but, since being diagnosed, this is the worst i've ever felt in my life...

I really hope there's hope for me...

Thank you for any reply..
 

·
Registered
Joined
·
268 Posts
I personally had to stop with the functional doctors and all the supplements (and they were weird ones). I don't think these are usually helpful. If they were normal ones I'd be OK with it (Vitamin D, Selenium, Magnesium, etc. I know that's how they make their money in general, but they are not things that I think are helpful in most cases.

Vitamin D supplements would help. Try to get it around 50ish.

One thing that seemed to help get me more stable (still working on stuff though) is tracking my nutrition and ensuring I'm getting enough calories. I use cronometer.com and track my food/nutrients. I take Vitamin D (5000 a day for awhile, but now that my level is 50 I'm at 3000ish) and I take a high quality multivitamin from Whole Foods. That's it.

I try to do a lot of bone broth, salmon, veggies, oatmeal, eggs (I can tolerate them), etc. My gut is still not likely very good. Probiotics in small amounts could help. But I got a lot of anxiety with large amounts.

I'm on a similar diet to yours and that seemed to help too. But I think getting calories and making sure I'm getting balanced nutrition helped quite a bit.

getting the medicine dialed in has been a challenge for me as well. Other folks on here are on T4 and T3 medicine and can help better than me on that.

Keep with it and keep getting support from folks like the ones on here.
 

·
Registered
Joined
·
64 Posts
Discussion Starter · #3 ·
Thank you for the reply.. I definitely keep a food & calorie journal.. I'm not too tech savvy but will def look up the cronometer.com... I try & get all the calories I can b/c my diet is so restricted..

I take a multi vitamin for children from Whole foods.. what one do you take?

My selenium is a bit too high right now.. at 191 w/ a range of (63-160)funny b/c my selenium in the children's vitamin is so low.. I also have chronic gastritis that gets flared up easily.. so, I have to be careful w/ supplements ect..

As for the functional med dox.. I don't take much of what she prescribes. I do take the adrenal cocktail once a day.. but, cannot take CBD's oil or a a few things she's suggested b/c they don't make me feel well..

This battle just started in Nov.. so, it floors me that it's become so severe..

I have no idea why my tolerance has declined.. I feel like I'm doing everything right but it's just making things so much worse..

I know you're not a dox.. but, do you think my endo is correct & i should go off of my thyroid meds? The only thing I'm afraid of is if I do.. then what if I can't take any thyroid meds to lower my TSH?

That scares me to death... the reaction i had to synthroid & levo was so severe... and funny, when I started this journey my TSH was at 16 and the doc gave me 50mg of levo and I was fine..well, better.. i didn't have any reaction.. didn't feel great on it but nothing like I am now..

I am still taking the NP thyroid but on a very small dose...

and.. I'm trying to hang in there.. I really am
 

·
Premium Member
Joined
·
7,065 Posts
I’m sorry, I can’t remember: did you have TSI?
 

·
Registered
Joined
·
268 Posts
I take a Men's 40+ once a day (I'm one of those rare men with the issue).

I personally do not think going off meds is a good idea. If anything cutting back a little if you feel like you are on too much. Anxiety can happen on hypo or hyper. Heart palps, high pulse, being too hot, night sweats, etc could be signs of too much.

It's my understanding that NDT (pig thyroid medicine) can have more T3 than people would normally have. Which could be the case with the specific one you are not.

My cousin spoke of the same issue when she switched NDT medicines. She had the heart palps and an increased heart rate. She said she was on Naturethroid and having the same things you talked about and switched to NP Thyroid and is doing much better. Everyone is different...but what this tells me is one of those had a higher amount of T4 or T3 and caused too much to be in there...or the wrong mix. Before those two she was on Westhyroid, but they had problems with supply and she had to switch.

I personally would try to find a different Endo (hard to find a good one). Supposedly you can go to the pharmacy and ask who prescribes NP Thyroid...then you'd know who would be open to using that type of medicine. For instance, none of my Endos would do anything but Synthroid/Levo. Or you could call and ask if they would be open to that before you went to them.
 

·
Registered
Joined
·
268 Posts
What supplements are you on? It's quite possible that could be causing some problems. I'd be more apt to stop some of those before stopping thyroid meds.

In the mean time. Realize it's not all in your head. It's just hormones out of balance. Try to do some enjoyable things (which can be tough when you are low thyroid). Take long warm baths. Find ways to lower stress.

I go to a therapist for anxiety. One thing that has helped me there is accepting the anxiety is happening and know it will pass in time. But going to someone isn't a bad idea even if the main source of the enhanced anxiety is the thyroid being out of balance.
 

·
Registered
Joined
·
671 Posts
Your thyroid might have just started working again and you no longer need the hormone.

I had strange things happen to me 30 years ago for about 8 months.

Back then I had no insurance and went to a local doctor which back then cost $20.00 to see.

I had blood tests that cost 60 bucks which was a lot of money back then.

This doctor could not find anything wrong and said I had the anxiety thing.....

Eventually all those strange feelings went away overnight and I was back to normal.

For so many years I wondered what those strange feelings were and would always knock on wood they would never return again.

25 years later I got my answer but this time symptoms & signs were much worse.

Hashimoto's thyroiditis can start acting up for awhile then your thyroid can snap back to normal without any warning or treatment.

It can't hurt to stop your thyroid hormone and see what happens.

You can always go back on it.

I don't know if you originally had hypo symptoms prier to taking thyroid hormone.

If you had a high TSH and no symptoms I wouldn't have taken anything unless I had symptoms .

You can have a high TSH without thyroid disease.

A common cold can make it rise...
 

·
Registered
Joined
·
64 Posts
Discussion Starter · #8 ·
At Joplin 1975.. I tested negative for TSI ...
 

·
Registered
Joined
·
64 Posts
Discussion Starter · #9 ·
Thank you everyone for your kind responses..

My functional Med dox wants me on meds.. and my endo wants me off.. lol

I am completely torn.. what I do know is that my endo is covered by insurance & my functional med dox is out of pocket at $500/hour... she doesn't push her pills though and will tell me where I can buy them locally..

Right now I am talking to a counsellor 1x/week.. and on a very small dose of buspirone for the anxiety

I do have heart palps and the start of some hypo symptoms/ aches, lethargy, shortness of breath.. i can always tell when it's off

Right now all I am taking is a child's multi vitamin.. and a supplement of Vit D3 w/ K to raise my D levels which are at 32

I am gluten/soy/dairy/corn/oil free and my diet is limited but I try to get enough calories and vitamins..

My TSh is at 4.05.. I do feel better around 1.3ish..

I just feel like if I go off.. my TSH will go higher & if I can't tolerate the meds.. I'm scared..
 

·
Registered
Joined
·
268 Posts
Yeah. If you feel better at a lower TSH and you are at 4 I think going off meds is a bad idea. I suggest a new endo. It's an odd request to go off of the meds to me.
 

·
Registered
Joined
·
64 Posts
Discussion Starter · #11 ·
I agree.. he wouldn't tell me his reasoning behind it.. and I specifically asked.. he seemed to think that b/c my numbers are 'in range' that I should have no problems.. he even said he treats number ONLY.. which i cannot get on board with.. I'm expecting a call from my functional med doc this evening so hopefully, she'll have some better insight.. (hoping)
 

·
Registered
Joined
·
671 Posts
If that Endo is treating by numbers and not by your clinical signs and symptoms too "yea" run away from that one and find someone else.

My PCP & I treat my thyroid .

It took me a few Endo's to figure out they are more into diabetes so I found an MD who took my desperation seriously enough to try alternative treatment other than t4 only med's.

"The results I have outweigh any risk" and I'll never take synthetic again.

Any doctor can prescribe thyroid hormone. Even a dentist.

Find one who treats you like a person and not a bunch of numbers...

good luck to you
 

·
Registered
Joined
·
64 Posts
Discussion Starter · #13 ·
Thank you CreepingDeath... Yep, I am not going back to that endo.. he was a lil' punk about all of it anyway.. finally got a call back from my functional med dox and all she said was "hang in there".. for what?? ugh... I am actually feeling a bit better tonight HOWEVER, shortness of breath is starting to creep back in...

Dang Hashimoto's.. this is getting really old..
 

·
Newbie
Joined
·
161 Posts
Hi Runa-D,

Are you male or female? What is your age and have you had your sex hormones tested?

I just want to add that I had crazy symptoms on Naturethroid and I switched to Armour and have had no problems.

I too experienced "adrenal problems" and those were resolved when I raised my carbs...(don't know if you are low carb...)

I hope you get to feeling better soon!
 

·
Super Moderator
Joined
·
6,606 Posts
My labs came in on 1/8/19.. (I had to pay for them myself)

TSH: 4.05 (0.4-4.5)

FT3: 2.7 (2.3 - 4.2)

FT4: 1.2 (0.8 - 1.8)

Yes, i know my body is screaming for more med.. but, when i titrate up.. on comes the panic, extreme anxiety, shortness of breath & heart palps..

Would you think it was my adrenals? My DHEA is at 413 (19-231)

My B12 is fine at 675 (200- 1100)

My Vitamin D is at the low end of the range 32 (30-90)

Can low Vit D cause all this?
It takes me 5K IU daily to maintain 1/2-3/4 of range for D.

Cant remember if you are male or female - Optimal Ferritin levels help when adding Thyroid hormone.

Any movement in thyroid hormone levels can cause your symptoms. One thing I'm curious to is what's your heart rate during your symptomatic phase? Blood Pressure? I remember early in my Graves journey when the Endo took e from hyper to hypo in 2 months - the anxiety, heart palps were unbearable so she prescribed Lorazapam. Once I leveled out those symptoms resolved even though she kept me hypo until my thyroid was removed 4 years later.

Your thyroid levels are so low - I almost have to say your issues come from that and the hormone movement once adding the hormone replacements. If your heart rate remains normal - you may just have to tough it out.

When was your last ultrasound?
 
1 - 15 of 15 Posts
Top