# Hashimoto's and Other Stuff...Sigh.



## eyota (Jun 23, 2013)

Hello! I'm New!

I want to start by saying thanks to all for the good information on this board, I've been reading it for the past week or so with great interest.

I'm new and recently diagnosed with Hashimoto's but have probably been struggling for some time (years). I also have been through the ringer the last few years with a cervical disc herniation (not a surgical candidate but struggle with pain and numbness). I think these two things could be related. I had a grandmother who was hypothyroid and later MS, and a mother who died fairly young of inflammatory breast cancer--I also have a native american background.

Prior to this, I was a very healthy marathon runner. I've gained almost 25 lbs in two years since this and often am in pain, but have dealt and still work and write. I also continue to work out daily, but of course, I feel pudgy and self conscious.

My numbers as they stood two weeks ago. I was prescribed 25 mcg Synthroid (got very itchy and my face swelled so we stopped that). I asked for Tironsint 25 mcg. For two days I did well--felt better. I now have considerable water retention in hands/feet, hair falling out and tired. To make it a bit worse, it's making my neck and joints hurt, which doesn't help. I tried to increase the dosage on my own but just got worse (especially the puffiness in my hands).

TSH: 5.01 (.05-5) 
T4 Free 0.90 (0.70 - 1.85
T3 Free:2.8 (2.3 - 4.2)
Thyroid Antibodies: Positive for anti-TPO AND TgAb 
Hematocrit: (low but still WNL) 39.7 (35.0 - 47.0)
B12, C, Vit D all WNL but on the low side.

For almost two years I've been trying to get to the bottom of why I feel so lousy since my MRI's did look "that bad". I've seen LOTS of specialists about my spine. I'm sure I was viewed as Dr. hopping and told I was "just anxious and depressed" more times than I can count. Interestingly, I'm a counselor by profession and can speak medical jargon. I think this hurt me more than helped at times.

FINALLY a neurologist who I really trust thought there may be an auto-immune component (MS) but the only test that came up "high" was the TSH and C reactive protein and I was referred to an endo who wouldn't even consider my case below a TSH of 10.

My GP followed it for months at my pressing and finally treated me when the number was over 5. I think we may have waited too long. I had to really harass her to get my free T's and other things tested and of course, they were out limit. I want to be healthy in case in need neck surgery that I can heal appropriately. I don't want just opiate or nerve medication--I really want to both feel better and lose a little weight. I'm not trying to be vain, I've just changed so dramatically.

I see a Naturopath on Tuesday. I think I need some T3 support (probably not Armour but Acella NP) and/or to even consider a course of low dose Naltrexone (LDN)?

Thoughts? Ideas? Hope? I'm frustrated right now so know I"m not super objective. I just used to be an active and fit woman and I'm tired of being told there is nothing wrong. Clearly, there is.

Thanks in advance.

Eyota


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## Andros (Aug 26, 2009)

eyota said:


> Hello! I'm New!
> 
> I want to start by saying thanks to all for the good information on this board, I've been reading it for the past week or so with great interest.
> 
> ...


You are on the right track w/ the NP. Be sure to start on a very low dose of Acella NP since you are prone to edema.

Yes there is a something afoot as evidenced by the antibodies. And because you do have Thyroglobulin Ab, I strongly suggest an ultra-sound of the thyroid.

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/


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## eyota (Jun 23, 2013)

Thank you-- I will ask if I can have that done through either the NP or my GP. On, on...


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## bigfoot (May 13, 2011)

eyota said:


> I'm sure I was viewed as Dr. hopping and told I was "just anxious and depressed" more times than I can count. Interestingly, I'm a counselor by profession and can speak medical jargon. I think this hurt me more than helped at times.


Welcome!! hugs6

I have learned to not show up with binders or folders full of labs and paperwork to doctors' appointments. I write my questions and thoughts down on a Post-It or small piece of paper, and might bring one or two recent lab copies. If the doc is interested and things look promising, I offer up more labs and so forth. Otherwise, I think many just get overwhelmed or feel like you are somehow "questioning" their authority. There are some big egos floating around. The folks I know who work in health care can attest to this.

As you've probably read, a lot of autoimmune diseases are linked, and where there is one, there is usually more. Pain and numbness could be tied into all of this, and your hunch is probably correct. I can tell you that when I was under-medicated, I would get weird numbness and tingling in my arms, legs, hands, and feet. Plus strange eyelid twitching at random times and lots of joint pain. And so on... the list of signs & symptoms is a mile long. After getting things more under control, the numbness and tingling has stopped, as has the weird eyelid twitches. The joint pain has diminished greatly.

The bottom line is that the docs will never acknowledge (and can't know) all the things that the thyroid can affect. And this is true of many other issues, like vitamin deficiencies, gluten sensitivity, sex hormones, drug interactions, etc. Modern medicine just doesn't know everything, period. It's part art, part science. For example, I had a weird itchy rash on my inner arms before being diagnosed as hypothyroid. No doctor could explain it. Then I was started on levothyroxine and, _wham_, the rash was gone. Still no explanation. There are things at play here we will never fully understand.

A TSH of 5.01 is not good. No way around it. The AACE has changed their recommendation in recent years, and the upper limit for TSH is supposed to be 3.0, not the 4.5 or 5.0 shown on most out-of-date lab results. So you definitely have something going on here, and I think getting more puzzle pieces will help greatly. The naturopath is a good idea -- just tread lightly, as some naturopaths always seem to "have a supplement for that", and can be almost as bad as a prescription-loving MD. There is a balance to strike; diet changes and supplementation are important, as are prescriptions and western medicine.

I would ask for some additional testing:
- CMP, CBC, etc. (if it hasn't already been done)
- Cortisol 24-hr. testing (either saliva or urine, broken into different collection periods)
- ANA, Lyme disease, H. Pylori, Mono, Celiac, gluten sensitivity, RA factor
- Reverse T3
- Estrogen, Testosterone, SHBG, etc.


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## eyota (Jun 23, 2013)

Thanks so much for your thoughts, bigfoot. Went to see the NP and not super helpful with the meds--in the state I live NP's can'g prescribe NDT or T3, which is what I'd like to try, and probably need to try next.

Although I'm happy to work with her on other things like adrenal support and diet, etc, she also was heavy on supplements, which I declined. She wanted to prescribe me glandular support which I didn't go for. That doesn't sound quite right. I'm a little frustrated. Some of this I can do on my own with some guidance, of course, and truly, what I need now is to figure out the thyroid balance piece. That's just essential, frankly.

However, she DID say she was going to do some checking for me on prescribers and assist with that piece, so I'll go with it for now.

Sigh. Back to the drawing board. I cannot understand why trying different thyroid meds is such an issue? I seriously have an easier time getting class II narcotics with a high street value than something with T3 in it, which no one cares about.

I have found myself wondering if I can just order it myself. I'm sure I'm not the first one to consider that sadly...but will keep looking as I do think it's important to find a good health care manager-partner.

I think I scream "complicated". I'm not trying to be...I just am.

Eyota


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## bigfoot (May 13, 2011)

eyota said:


> I have found myself wondering if I can just order it myself. I'm sure I'm not the first one to consider that sadly...but will keep looking as I do think it's important to find a good health care manager-partner.


Don't do that. We had someone else here recently who did that, and the T3 medication they received was a scam. I think your idea to check with the ND and see if she knows any open-minded doctors is a great idea. In fact, that's how I found my doc.


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## eyota (Jun 23, 2013)

I won't...really. I'm looking hard for a care provider. I'm just REALLY frustrated.

Thanks for your thoughts!


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## bigfoot (May 13, 2011)

I hear you -- try to turn that frustration into action, and refining what you are looking for in a doc and in diagnosis/treatment. I have been through a myriad of PCPs and specialists, one of which even flat-out didn't think I had a thyroid problem. Yet another refused to run even a basic TSH, despite being diagnosed and treated as hypo. Well, lo and behold, I wound up having Hashi's, along with other autoimmune issues that were missed.

It got to the point where upon meeting a new doc, I just asked very bluntly about how they treated and monitored thyroid problems. This was even before I got into many details about my own issues. If they quickly discounted Free T3 and Free T4, or rolled their eyes about taking a small amount of T3 with T4 medication (or Armour), it was on to the next. That was my litmus test of sorts.

hugs3


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## eyota (Jun 23, 2013)

I may be on to some leads--the NP I saw has a contact with an nurse practitioner that can prescribe and is known to be open to NDT options. I'm calling today.

I am tired going through this system again for something new and getting the same run around--it costs a lot of time and money! I went through this SAME thing with neck issues--being dismissed, told nothing was wrong, I was anxious etc. It wasn't until I was in the ER and something had to be done that an MRI confirmed there were BIG issues. I know I'm preaching to the choir here, but something is wrong when physicians don't have time to really get to the bottom of things, but aren't willing to listen to patients who do want to explore, do the research FOR them and really work to improve their own health. I'm not angry at doctor's per say, but something must change if this is what it takes to even try something...who knows if that will even _work _for me! sigh.

Anyway. Off the soapbox. We'll try to see if I can see this person for a consult. On, on!!!

Thanks for your encouragement and words of screening advice.

Eyota


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## Octavia (Aug 1, 2011)

We hear you, loud and clear!

Keep us posted. :hugs:


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## Andros (Aug 26, 2009)

eyota said:


> I may be on to some leads--the NP I saw has a contact with an nurse practitioner that can prescribe and is known to be open to NDT options. I'm calling today.
> 
> I am tired going through this system again for something new and getting the same run around--it costs a lot of time and money! I went through this SAME thing with neck issues--being dismissed, told nothing was wrong, I was anxious etc. It wasn't until I was in the ER and something had to be done that an MRI confirmed there were BIG issues. I know I'm preaching to the choir here, but something is wrong when physicians don't have time to really get to the bottom of things, but aren't willing to listen to patients who do want to explore, do the research FOR them and really work to improve their own health. I'm not angry at doctor's per say, but something must change if this is what it takes to even try something...who knows if that will even _work _for me! sigh.
> 
> ...


I kind of figured the NP might be the way to go. They know how to work the "system" and get you what you need.

Let us know when you have the appt. with the nurse practitioner and good luck!!


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## bigfoot (May 13, 2011)

"Listen to your patient, he is telling you the diagnosis." Sir William Osler, M.D., 1st Bt.


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## eyota (Jun 23, 2013)

Update: success, with a caveat...

So, I called the nurse practitioner recommended and got "you can see her in November" to which the answer was "no thanks". I then called around to many, many other places and asked them outright if their practice was "open to many options including considering natural thyroid hormones or T3 as part of possible treatment" and got lots of "no's". At least I didn't waste my time.

Then, someone told me about a practioner in another state where my family lives who sees clients and then follows them via skype and online. Got an appointment, got into see him right away since he knew I was coming a distance, got Nature-throid. He was SO complimentary of me and said, "you must feel terrible with these numbers." He also worked out a "let's do this first and then we do this and this and this..." And, he was great. Not dismissive, not a jerk. He's also limiting his practice a lot more--I can see why.

I have some hope. I'm also realizing I've been sick for a long time. IN going through some old charts and tests from a long time ago, way back in 2006 someone ran a TSH and I was 6.5 at that time. Really? No one said anything or told me?

I'm starting on a mini dose (1/4 grain) and then will increase from there. He's also got me on an adrenal protocol--no prescription for that unless I don't improve.

Weird thing I've noted is that right after I take the naturethroid I feel worse for a little bit--more achy and quite tired, which surprises me considering the T3. Then about 4 hours later, I feel pretty good. I have also noted that I have edema as I have with any thyroid med, but it ebbs and flows even after 3 days more than it did on t4 alone. Any thoughts on the edema?Anyone else have this? Does it just take time?

He wants me to hang in there on this for 7-10 days and then we'll increase if I can to a 1/2 grain, etc. This is gonna take awhile. I know I'm not even close to optimal.

I was frustrated yesterday (after 3 days..yeah..I know...) that the t3 wasn't like INSTANT help. The best thing I can guess, too is that I have some reverse T3 issues...on the next blood draw, we're gonna look for that.

I just need a little 'this is gonna get better' because, to be honest, I'm a little skeptical...hahahaha...I just feel like I look horrible and drag myself around a lot...

I'm dropping the NP right now--I'm sure she's good with some things, but I need care from someone who really gets this.



Thanks!


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## Andros (Aug 26, 2009)

eyota said:


> Update: success, with a caveat...
> 
> So, I called the nurse practitioner recommended and got "you can see her in November" to which the answer was "no thanks". I then called around to many, many other places and asked them outright if their practice was "open to many options including considering natural thyroid hormones or T3 as part of possible treatment" and got lots of "no's". At least I didn't waste my time.
> 
> ...


When your body is starving for T3 and yours is, the help is not instant but you will get there. You are so so fortunate to have found this doctor. Do as he instructs. The edema will pass in time.

I am so happy for you. It took a long time for you get so unwell so you need to realize it will take a bit of time for your body to heal.


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## eyota (Jun 23, 2013)

Thanks...just keep reminding me of that. I'm weirdly like "am I better now? How about NOW?" There are baby steps of improvement, and I'm really on a tiny dose so with more, I hope to see more.  My thyroid is probably really confused at this point.

Not a sprint...a marathon...


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## Andros (Aug 26, 2009)

eyota said:


> Thanks...just keep reminding me of that. I'm weirdly like "am I better now? How about NOW?" There are baby steps of improvement, and I'm really on a tiny dose so with more, I hope to see more.  My thyroid is probably really confused at this point.
> 
> Not a sprint...a marathon...


Small increments insure success. Many of the posters here will concur w/that!


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