Help Beyond Exhaustion.

[Zavime]

Hi I take Levothyroxine for Hashimoto's 5 years. My labs have always been in range, but I feel aweful since 3 years ago. I also found my cortisol am level was 0.6 my ATCH was low as well TSH Was 0.15 and Urea Nitrogen was 7 all low. I have PTSD for Decades first responder and take antidepressants. when this test was run, all my meds were out of wack for no reason. Ambien would not even help me sleep. I cannot take SNRI's only SSRI's. Genetic tests said never take Duloxotine but that was after I had been prescribed it. on Duloxotine I was beyond sick. I felt poisoned and it took me 6 months to get off duloxatine and it was painful every day. I was taken off and swapped meds at a very expensive inpatient facility and was losing my mind due to no tamper. I finally had to leave as they didn't know how to treat PTSD, even though they said they did at 2,200 a day. my work paid for it, such regret.

So, is it possible that the low adrenals are an issue effecting my medication? or my Medication effects my adrenals, could it be damage from severe withdrawal, or stress killed my adrenals? could it have been a fluke? I'm desperate and docs find out you have depression or anxiety or PTSD, they blame everything on it's in your head. it isn't, I did great for years now I'm a total mess, I know the difference.

I was doing really well for 20 years on Antidepressants then I got Hashimoto's 2 years after and I got weaker and weaker + Constant thick mucus causing throat clearing.

Does anyone have anything similar? I haven't been able to work for 3 years due to this. ive been every doctor imaginable.

So many tests, but nothing. I'm looking for help. I'm ready to try Cleveland Clinic even though I live 2K miles away but I'm not sure what is wrong with me. thanks for reading and any thoughts are welcome.

[SlowDragon Administrator]

You need vitamin D, folate, ferritin and B12 levels tested

Low vitamin levels are extremely common, especially as you have Hashimoto's

For full Thyroid evaluation you ALWAYS need TSH, FT4 and FT3 tested

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results.

(Patient to patient tip, best not mentioned to GP or phlebotomist)

How much Levothyroxine are you currently taking?

Is it always the same brand of Levothyroxine

Do you Always take Levo on empty stomach and then nothing apart from water for at least an hour after?

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

As you have Hashimoto's are you on strictly gluten free diet or considered trying it?

[wroberts]

Your cortisol and ACTH are low- suggestive of another autoimmune issue- Addisons Disease. Did docs mention that ?

[humanbean]

With such incredibly low cortisol and low ACTH you need more testing and thorough investigation.

Cortisol is one of the steroid hormones and it isn't optional - it is essential for life.

en.wikipedia.org/wiki/Adren...

en.wikipedia.org/wiki/Addis...

Hidden is very knowledgeable about adrenal and cortisol issues. Hopefully she will see that she has been tagged and will have some info for you.

[humanbean in reply to humanbean]

Another thing I should have mentioned...

If your body has extremely low levels of cortisol, or runs out of cortisol completely, it would bring on what is called an adrenal crisis or an Addisonian crisis, and this can be fatal.

en.wikipedia.org/wiki/Adren...

Don't put off seeing someone - you need to be tested and treated urgently. Bear in mind that the treatment for extremely low cortisol is steroids - and they must be taken for life. You can never allow yourself to run out of the prescribed treatment.

[HLAB35]

As per Slow Dragon's response we'd want to see what your Free t4 and Free t3 readings are with regards to your low TSH. I notice this lists only bloods outside of ref. range rather than anything at the top or bottom of the range, the so-called 'normal' results. The range boundary markers are a bit arbitrary and it's just bad science and appalling statistical analysis for your doctors to rely on these exclusively. As you suspect, anxiety / depression comes with the territory of inflammatory illness and just treating the mental health issues is not going to treat the root causes. Anti-depressants, for example, can induce multiple nutrient deficiencies - including Magnesium, co enzyme Q10, B2, B6, B12 and Folate - that can make a patient already lacking these things considerably worse.

optimallivingdynamics.com/b...

Have you been checked for hypopituitarism or Addison's disease? I live in the UK so cannot easily recommend the best course of action, but have found links for the States...

pituitary.org/medical-resou...

nadf.us/adrenal-diseases/ad...

[Hypo59]

I've been doing a lot of reading on the thyroid/adrenal connection (seems to be a problem I have). You should probably have some more testing done, but know that it is not uncommon for people who are hypothyroid to also have Addison's disease (primary adrenal insufficiency) or secondary adrenal insufficiency, and that's what your test results above seem to indicate. If your adrenals are not working then yes, you will feel terrible and it will seem that your thyroid meds just aren't working. Low functioning adrenals can give you all kinds of weird symptoms, many of which mimic low thyroid. If you test positive for adrenal insufficiency, you will probably require a daily dose of a corticorsteriod like hydrocortisone. Since you've already tested low for cortisol, seems like you need to approach your doctor for more intensive testing. Then you will need to adequately address your thyroid issues. I'm not a big fan of levothyroxine as I never did well on it, but some people seem to do fine.

[whyz68]

What everyone else said and cortisol as well as some other hormones affect cell sensitivity. That means if your hormones are really out of whack, you can experience a lot of confusing symptoms; even a mixture of hypo/hyper-thyroid symptoms. The amount of thyroid hormone circulating in your blood is just that-circulating hormone. It has to be taken into your cells in order for the body to be able to use it. Cell sensitivity dictates how much will be let in. On 3/4 grains of Naturthroid I have had a TSH of anywhere between 7 and 14. If it was completely dosage dependent, there should never have been a 7 point difference. And yes I know and follow the rules regarding how long to wait after taking NDT before eating, drinking, supplementing. I wait 6 hours just to make sure. I know that you are suffering right now, but it will take time to get better. To shorten your nightmare, you will have to read and educate yourself. Unfortunately you can not rely on doctors to fix your issues. Try to find a good doctor who is open minded to work with. If you're interested in educating yourself, ask for suggestions of books that have been the most helpful. Good luck.

[humanbean in reply to whyz68]

Unfortunately you can not rely on doctors to fix your issues.

If the person posting has Addison's Disease then she has no choice but to rely on doctors to fix it. Appropriate levels of steroids must be prescribed to keep her alive. I have never heard of anyone managing to "fix" Addison's or other problems with extremely low cortisol by themselves.

[whyz68 in reply to humanbean]

Did you miss the part of speech that said "what everyone else said" which included your insight because you are part of "everyone else"? If this person followed my advice about finding a good doctor, a good doctor would test for Addison's right? Furthermore, If Zavime was offended by my post then it would be Zavime who would reply to me not you. I repeat, you can not rely "solely" on doctors because they can not fix all of your issues. Does adding "solely" help you to understand. Sick people have to empower and educate themselves, not wait around for some doctor to "fix" their problems. If it were that easy, there would be no reason for this website.