Hashimotos hell. Need advice please.

[JackSchidt]

I have a long story, but I'll try to shorten it a bit. I think my Hashis showed up around 9 years ago. Looking back it's so obvious with the issues I've had. Anyway, I was not tested for it until I had postpartum thyroiditis after my daughter was born in 2012. Since then, it's been an absolute hell. My levels are not bad, but I am VERY symptomatic i.e. hot/cold spells, muscle pain/spasms, heart rate issues, mood issues, fertility issues... I started attempting to medicate several months back due to the fertility issues. 3 m/c so far since my daughter. My TSH and free T's were not bad, but not optimal for pregnancy. They tried me on Synthroid 25 mcg and my TSH went "too low" (1.46) after only a couple of weeks so they pulled me off. a few weeks later my TSH was back up to 2.8 so they started me on Synthroid 12.5 mg. I felt absolutely terrible physically, but my mood was better actually. My heart rate started dropping into the 50's and I was getting dizzy, muscle weakness and spasms, inner trembling, lightheaded. So, I went to the endo that my RE sent me to. She told me to up my dose back up to 25 because my TSH was still 2.8 and that all the other symptoms were NOT from my thyroid or medication. So I fired her. I'm now seeing an integrative np. Initial labs were (on 12.5mcg)
TSH w/ reflex to FT4 1.62 mIU (0.4-4.5)
Free T3 3.6 pg/mL (2.3-4.2)
Reverse T3 17 ng/dL
Vit D 24 (currently on 10,000 ius daily)
Ferritin 27 ( currently on supplement)          ......fluke mistake there is no Ft4
So, she said just to stay on the 12.5 mcg and we started working on food sensitivities, started DHA/EPA 1,000mg, Magnesium 300 mg. Two days after I saw her I quit the synthroid because I just couldn't stand it. I felt GREAT after quitting until I could feel that I definitely went hypo again. So I went in and labs were..
TSH 1.23 mIU/dL (0.4-4.5)
FT3 2.9 (2.3-4.2)
FT4 1.1 (0.8-1.8)
So ok TSH, but my free t's were obviously why I was feeling like crap. So she ordered 12.5 mcg compounded. Started it a few weeks ago with same result. My resting pulse is 50 plus all the same symptoms. Some even feel like hyper symptoms. I have no idea what to do next. Why can't I tolerate such a small dose? And why in the world is my pulse getting so low while taking a med that should make it higher? I'm so fed up. I know my labs aren't terrible, but I am so symptomatic of the Hashis that I have to do something. I'm getting desperate.
  

[JackSchidt]

Oh and my B12 was actually high. I was only taking a prenatal. That's a whole other can of worms. I did 23andme to check for mthfr. I did not have that, but I was hetero MTRR, but also have another defect that says not to take methyl donors. I'm kind of a mess.

[JackSchidt]

Yea I have been researching a lot and that was definitely why I quit seeing that endo. The integrative no that I'm under is really about treating symptoms. At this moment, im having symptoms of both hypo and hyper.I Don't have another appt with her until Aug 17. When I called her yesterday to tell her about the resting pulse in the 50's, her nurse called back and said to take the compounded t4 every other day to see if I could tolerate that. Honestly though I don't think that'll be enough to make a difference. My thyroid is definitely swollen and burning tender. I think the t4 threw me into a swing. I just know that I need to treat it on the fertility end of things and I'm just stuck. Without meds the depression, body aches, and anxiety pop up pretty quick. I'm do not have these issues by nature so I know that's what it is. I just really want my life back. I'm tired of being anxious and feeling numb.
Vit d 24.. On 10,000 ius daily
Ferritin 27... On supplement and eating high iron diet
24 hr cortisol.. Morning low, midday normal, evening high, and bedtime high
She said with the cortisol she felt if we got my other levels where they need to be and my thyroid worked out that it correct on its own. Problem is that I can't tolerate the hormones. Thank you so much for your input. I'm a nurse, but I'm definitely struggling here.

[gimel]

First, it is important to understand that TSH is not a thyroid hormone, it is a pituitary hormone that is affected by many things, to the point that at best it is only an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones. Free T4 and Free T3.  Doctors like to think that TSH accurately reflects levels of Free T4 and Free T3; however, in reality it cannot be shown to correlate well with either Free T4 or Free T3, much less correlate well with symptoms, which should be the number one concern.  

When already taking thyroid meds, the TSH level frequently becomes suppressed below range.  That does not mean that the patient is hyperthyroid, unless there are hyper symptoms due to excessive levels of Free T4 and Free T3.  There are even scientific studies that will confirm what I say.  

So, the doctor was wrong to react to your TSH level and reduce your med.  Many members say that relief from hypo symptoms required Free T4 at the middle of its range,k at minimum, and Free T3 in the upper third of its range, or as necessary to relieve symptoms.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while TSH and Free T4 did not correlate at all.  This is only logical since Free T3 largely regulates metabolism and many other body functions.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T4 and free T3 levels as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief has to be all important, not just test results, and especially not TSH results.  You can get some good insight from this link written by a good thyroid doctor.  

http://www.hormonerestoration.com/Thyroid.html

In addition, hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  Adequate levels are very important for a hypo patient.  D needs to be about 55-60, B12 in the upper end of its range, and ferritin about 70 minimum.  So you also need to get those tested and supplement as needed to optimize.  Another thing that you may need to test, based on having a reaction to even a small dose of med is to get a diurnal saliva cortisol test done.  That is actually 4 tests taken at different times of day.  Doctors are very reluctant to do this test.  They only want to do the serum cortisol test, which is not very good.  

So you need a good thyroid doctor that will treat clinically as described.  The integrative doctor may be a good candidate.  You also need some additional test work.  And you need to stay positive.  This is not rocket science.  You just need to get these tests done and then we can make a thorough analysis and advise further.  Stick with us.