Thyroid nightmare, please read and help!

[Milleecents]

Hi! I am truly hoping someone, anyone has some insight for me. I was diagnosed hypothyroid May 2012, 17 days after a catscan with iodine contrast. My thyroid felt swollen, I went to the doctor and my tsh came back at 9.9. I do not have documents on t4 or t3, but they were normal and I remember checking them and they truly were normal. My antibodies were negative. I was put on synthroid and adjusted pretty well over the next year. I did experience severe breathing issues at the time as well. Fast forward to August 2016, I had an ovarian cyst rupture and passed out so my husband took me to the emergency room. I had another catscan. Two weeks later I developed dry hot flashes in my face and tingling in my hands and feet and a major headache. I went to my PCP and he said it absolutely wasn't thyroid, iodine contrast wouldn't do that and it was my iron levels. I had been battling iron issues due to female issues. So, he decides to refer me for an iron infusion and upon my request, prescribed me armour thyroid. I always wanted to try armour as I've not felt the same since diagnosed with thyroid disease. Well, armour is not for me. I felt like I needed to jump out of my skin. I couldn't sit down! And I became hot, hot flashes became worse, raised pulse, insomnia etc. I stopped taking it after six days. It took me six weeks to stop having hot flashes and panic attacks. After the armour my doctor took me off all medication until I leveled out. My labs did not indicate hyper and never did, but I felt it and will never forget it. I have now been of synthroid since October 5th and have gone down hill. My labs are still normal, TSH 3.41, ft4 is 1.18 and ft3 is 3.00. I feel terrible. I've never been bedridden in my life until now. My head is so foggy, vision double, body is so weak and aches, especially my neck, back, upper arms and thighs. I feel like I will collapse if I get up. Four months ago I was running and lifting weights. I could squat 185 and deadlift 225 pounds! Now I can't lift my three year old! I finally went around my GP who says this is panic disorder and saw and endocrinologist, who is having me start synthroid again due to my symptoms. He started me back at 50mcg, which was what I was on for the last four years. After three days my symptoms were all better, but I became hot with a temperature of 99.6 and experienced anxiety along with insomnia. I stopped meds for seven days and took 12.5mcg this morning. I am still bedridden. Anyone experience anything like this? I am at the point I am wondering if this isn't thyroid? My am cortisol was 12.5, my ferritin is still a bit high after the infusion at 130 and my b12 was 495 in July, and vitamin d was 55 in July. Any thoughts or advice? I have had numerous ekg's all normal, stress test normal, inflammation markers normal and my echocardiagram came back with mild to moderate tricuspid regurgitation which they say is not concerning at this time, but since I'm having symptoms my doctor referred me to a cardiologist. I am also once again short of breath. Hope this isn't too much info!

[gimel]

It really depends on the degree of cortisol deficiency.  Treatment can range from stress management to hydrocortisone med.  First thing is to get some further testing done to confirm or rule out a cortisol deficiency.

[Milleecents]

Ok, thank you!!!

[gimel]

Good.  Remember to ask for the free T3 if you get approval for a Reverse T3.  If you test for antibodies, TPO ab should be first, and if negative, then TG ab.  I am not sure about the the possible effect of the scan on TSH.  I do know that elevated iodine can cause TSH to rise.  I think the key to diagnosing a thyroid issue at that time would be symptoms, that is why I asked about those.  At this point your latest thyroid test results for Free T4 and Free T3 are at about 40% of their range, which is not too bad, but could be improved; however, it may be that the first thing needed is to determine your cortisol level and whether it is causing your symptoms.  For example, check this list.

The symptoms of low cortisol, or hypoadrenalism, include:

    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

So it may be that you have to address any cortisol issue first and then see how you are feeling afterward.  

[Milleecents]

I see a lot of symptoms that really stand out. Weakness, fatigue, dizziness, faintness, anxiety and many more. How are the adrenals treated? Hydrocortisone? Or is there another treatment?

[Milleecents]

Yes, I will definitely ask for the saliva cortisol and reverse t3. If my doctor won't order them I will order it myself. I'm at the point I'm desperate for answers and am not willing to be miserable on their clock. By what you say and what the link you posted says that could be my issue. My ferritin isn't 39 now, just to clarify, it's 141 per my last test. However, I agree, my iron was low when I tried the armour regardless of the infusion at that time because it takes awhile for the body to absorb it all. Thank you so much for all your help!!! I'm at my wits end and want so badly to feel better!

[Milleecents]

I forgot to answer your first question. I was put on meds due to tsh and symptoms. However, I believe my iron was low then as well and I had just had gallbladder surgery in April of 2012, so I wasn't feeling well at all and was having trouble trying to put two and two together. I had the catscan because I developed an infection after my surgery. I wonder if the iodine from the catscan gave a false high tsh reading and I didn't have a thyroid problem. However, my body feels like a mess now having been on it for four years.

[gimel]

Before going further, I would like to  go back and ask a few questions.  When you were originally put on thyroid med, was it because of symptoms or just the high TSH level?  If you had symptoms what were they?

I am suspicious that the reaction to the Armour Thyroid was the result of low cortisol or low ferritin, since you had only just started iron infusion due to low iron.  Ferritin is considered as a precursor to iron levels, so your current level of 39 is far below recommended level of at least 70,and some say 100.  So it appears you are going to need to supplement that daily with something good like Vitron C.  

If you are going to try and get tested for Reverse T3, you might have to tell the doctor that, as shown in item c. on page 5 of the link, "RT3 is an excellent marker for reduced cellular T4 and T3 levels not detected by TSH or serum T4 and T3 levels".  If you look at the diagram on page 7 of the link you can note the many things that can affect tissue thyroid hormone effects, which essentially powers our bodies.  If you are able to get the RT3 test, you should also get a Free T3 from the same blood draw.  That will enable a good calculation of Free T3 to RT3 ratio.

While at the doctor, if there is any way to get a diurnal saliva cortisol test taken at four times during the day, I highly recommend it.  Diagnosis of cortisol is somewhat difficult.  The saliva tests are for free cortisol, while the morning serum cortisol is total cortisol, taken only one time.  The reason I am pushing this is your relatively low serum cortisol result plus the achiness you mentioned.  Low cortisol can cause achiness.  If the doctor refuses, could you handle getting a test kit from ZRT Lab?

[Milleecents]

Thank you so much for responding Gimel! Here are my recent labs with reference ranges:

January 3rd 2016 fasting thyroid test

Tsh 3.410  0.270-4.200uIU/mL
Ft4 1.24. 0.93-1.70 ng/dL
Ft3. 3.0. 2.0-4.4pg/mL

Ferritin 141 6-170ng/mL
I know this has come down a little more, but don't have the labs from the ER yet. This was December 27th 2016.

Cortisol 12.4ug/DL. 6.0-18.4ug/dL done at 8:05 am fasting

July 2016
B12 495pg/mL. > 246 ph/mL
Vitamin D. 55 ng/mL. 30-150ng/mL


I am planning to retest my own antibodies this Friday and will look to see if I can order a reverse T3 test as well. My iron infusion was done four days into taking armour thyroid. At the time, last week of September 2016, my ferritin was 39, but my full iron panel looked great. I will look those numbers up if needed, but I know my serum iron was in range and my saturation rate was great. However, my CBC ALWAYS makes me look iron deficient. I'm beginning to wonder if I have a blood disorder. I still have a high count of red blood cells that are tiny with low mov and mch, my hemoglobin finally went up last week. Very strange. Let me know what you think!

[Milleecents]

I was off in the main post on my ft4, that was the level before. This one is the most recent.

[gimel]

Wow you have really been through it.  A couple of things come to mind.  I would first like to see you get a more thorough panel of tests done.  Specifically I suggest those listed in suggestion no. 2 on page 2 of this link.

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

I would test for Free T4, Free T3, Reverse T3, TSH, and Thyroid antibodies (both TPO ab and TG ab) if not done previously.   Also I would test for cortisol, Vitamin D, B12 and ferritin.  If the doctor is willing to test for free cortisol with a saliva cortisol panel, rather than morning serum  cortisol that would be even better.  If the doctor is unwilling to do the saliva tests, then you could order it online and get a kit and send it and get results in a week or so.  Cost is about $145 for a 4 test panel of saliva (free) cortisol.  

The reason I include cortisol and ferritin is that low cortisol or ferritin can cause reactions like you mentioned when starting on Armour.  And I assume that was before starting iron infusion.  

For a little bit more clarity, please post the reference ranges for the recent Free T4 and Free T3 test results.  Also when were they done?  Also what time of day was the cortisol test done and what was the reference range shown for that time of day?