Aa
A
A
A
Close
Thyroid Disorders Community
26.2k Members
Avatar universal

At my wit's end - can you help?

Right, this will be a long one!
Female, just turned 27, white. Family history of thyroid problems (not sure what exactly, just know a first cousin had trouble conceiving, had trouble getting diagnosed but eventually found out something about her thyroid, went on medication and had a baby).

In retrospect my first symptom of thyroid issue was about 4 years ago when I was getting pressure in my neck, feeling like I constantly needed to swallow. Went to the doctor and she was ridiculously bad, just felt my neck, said there was nothing there and prescribed reflux medication (it feels nothing like acid in the slightest). I never took it and after perhaps five months the pain went away.

In March 2014 I experienced fairly intense hairloss (probably about a quarter of my hair). Due to some hairs on my chin, the doctor checked for PCOS but said that my hormone levels were good. I think they checked TSH and iron at that point too – said they were okay. I started to realise I had a lot of thyroid symptoms but the doctor said I didn’t need further testing and as I was moving overseas I left it at that. He said he could see new hair growing in and suggested upping the fat in my diet to help further. I moved to Japan in August 2014.

In May 2015 I went to the doctor concerned because I had developed diarrhea. I thought I had a worm or food poisoning or something. Doctor wasn’t concerned, gave me probiotics. Context – I have a very healthy diet and for 25 years was a ‘in and out of the bathroom in 2 minutes, once a day’ kind of person. This had changed I was in there 4-5 times a day, very explosive foul stools and ‘oil’ floating on the surface which I now know is a sign that nutrients aren’t being absorbed. I didn’t know what else to do (foreign country, can’t speak Japanese, embarrassed) and this went on for perhaps 6 months, but lessening in frequency to perhaps 3 times a day, before it went away.

In October 2015 the neck discomfit came back and I noticed an increase in other typical hypothyroid symptoms (listed below). The neck was much worse. I wish we had a word in English to describe it! Not pain, but such a discomfit it might as well have been. Someone said it’s like swallowing a large pill and it getting stuck. I would say that’s exactly how it feels, with the added feeling of someone continually pushing against my thyroid from the outside.

I went to a different doctor and he ordered an mri. The mri showed lesions, but they’re small, I think 0.7cm is the biggest. Because of those results he sent me to an endocrinologist. He ordered bloods (TSH, not antibodies) and said it was normal. They then did a ultrasound and needle aspiration to rule out cancer. He basically sent me on my way then, wasn’t interested in hearing what the thyroid felt like, just repeated that it wasn’t large and the TSH was normal. He wasn’t interested in hearing symptoms, when I mentioned the heart skipping feeling he said that I don’t have a thyroid problem so therefore if I am feeling heart palpitations it’s not from that.

For maybe 1 or 2 months the pain was gone. Then it came back, along with the skipping heart feeling, intense night sweats, diarrhea and exhaustion. Went back last week and he felt the thyroid, said he didn’t think it was bigger. I insisted on new bloodwork and asked for antibodies and ferritin. He kindof laughed at me (Japanese doctors are very respected and it’s not normal here to ask questions, or tell them what to do). He did order them though (results bwlow). He asked if I had allergies and I said no and he said allergies could cause throat problems. I said I didn’t think that was the problems (I do have dust allergies so I know the symptoms generally) but he said I needed a larynoscopy anyway. Went to the ENT, he was baffled about why I was there and said there was nothing wrong with my throat. Had another ultrasound – no change in size. Got bloodwork back yesterday, doctor said they are all normal. I’ve tried to translate what I can below, there’s some I didn’t list because I couldn’t work out the translation but if someone thinks there’s something missing I will try again. At this point he was ushering me out of the office but I made him sit down again and said that I understand that there is no abnormal results but the fact is that my neck is at times almost unbearable. He suggested I gargle with water and not eat too much seaweed… I think I’m at a standstill there and I don’t know what to do. What do you think of my symptoms and blood results? Over the last 5 years I have so often told myself I’m just being a hypochondriac because it’s so easy to look at a list of symptoms and pick out all the ones that apply. But truly being honest I have listed the ones I have below (using the hypothyroidmom large list as reference.) I was just so convinced on hashmotos, now that he says I don’t have it I’m feeling incredibly frustrated.

Bloodwork April 2016
White blood cell 42 (35-91)
Red 419 (376-500)
Free t3 3.8 (2.2-4.1)
Free t4 1.35 (0.88 – 1.81)
Thyroid stimulating hormone TSH 0.56 (0.35-3.73)
BTSAB 104 % (less than 120%)
Anti TPO antibody TPOab 12 iu/ml (less than 16)
B12 277 (249-938)
Ferritin 16.2 (5-120)
Symptoms
Energy Level and Sleep:
 Weakness
 Wake feeling tired
 Frequently oversleep
 Very deep sleep but not refreshed when wake up

Weight:
 Weight gain
 Inability to lose weight

Body Temperature:
 Night sweats
 Heat intolerance
 Cold hands
 Clammy palms
 Excessive perspiration
 Low basal body temperature (below 97.8 degrees Fahrenheit) (not positive on this – I tried to keep track and I believe it was below this)
 Upper respiratory tract infections
Swelling and Thickened Skin of:
 Legs
 Feet
 Ankles
Mouth and Throat:
 Difficulty swallowing
 Sensation of lump in throat
 Sensation of pressure on throat
 Pain and tenderness in neck and/or thyroid area
 Thyroid nodule
 Low, husky, hoarse voice
Ears:
 Internal itching of ears
 Dry, scaly ear canal
Eyes:
 Poor focusing
 Double vision
 Dry eyes
 Gritty eyes
 Achy eyes
 Blurred vision
 Sensitive to light
 Frequent tics in the eyes
 Red inflamed eyes
 Dark rings under eyes
 Rapidly shifting gaze making you feel dizzy
Hair:
 Hair loss
 Dry hair
 Frizzy hair
 Coarse hair
 Premature gray hair
 Change in hair texture
 Facial hair in women
 Thinning or loss of outside third of eyebrows (mot positive, thin but might be just the shape)
 Nails:
 Brittle
 Pale
 Soft
Skin:
 Dry skin
 Pale skin
 Pale lips
 Easy bruising
 Chronic itching (not sure if it’s chronic but it is very itchy)
 Varicose veins
 Premature aging
 Parchment-like fine wrinkles
 Red butterfly patch over cheeks and nose
Numbness and Tingling:
 Legs
 Feet
 Arms
 Hands
Pain:
 Wrist pain
 Muscles and joint pain
 Aching bones
 Aching muscles
Digestion:
 Flatulence
 Signs of nutrients not being absorbed
 Excess and abnormal for me diarrhoea

Other Related Conditions:
 Dizziness
 Vertigo
Brain:
 Brain fog
 Mental sluggishness
 Poor concentration
Lungs:
 Shortness of breath
 Tightness in chest

Heart:
 Skipped beats
 Heart flutters
 Heart palpitations

Others-
Taste of salt in mouth.
Feeling “puffy”
1 Responses
Avatar universal
Hypothyroidism is caused by either an inadequate supply of, or response to, thyroid hormones throughout the body.  Your Free T4 level is fine.  Your Free T3 level also looks fine; however, serum thyroid levels can sometimes be misleading.  Adequate thyroid hormone has to be transported into the cells of the body under the right conditions in order to be effectively metabolized.  So even though your Free T3 level looks good, the fact that it is higher in its range than your Free T4, with a low ferritin level, makes me wonder if you could have what is called "pooling of T3 in the blood".   Following is some info on that.


T3 Pooling

What is Thyroid pooling? This is when the thyroid hormone T-3 collects or pools in the blood and does not get into the cells.

How does T3 Pool? The cause of T-3 pooling can be any one of the following or a combination of the following:

    High cortisol
    Low cortisol
    High iron
    Low iron
    Medications
        beta blockers
        Amiodarone
        Iodinated contrast media
        Lithium

You do have low iron, as identified with the ferritin test.  Ferritin should be about 70, so you should take a good iron supplement as needed to optimize.  I also expect that you will have low Vitamin D.  D should be about 55-60.  Your B12 should be in the upper end of the range.  Low B12 can seriously affect energy levels.  

So I think that is where you need to start and optimize those three and see what the effect is on your symptoms and your serum FT4 and FT3 levels.  
Have an Answer?
Top Thyroid Answerers
649848 tn?1534633700
FL
Avatar universal
MI
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child