Unable to get a diagnosis

My doctor keeps telling me not to worry about my symptoms:

severe fatigue

I've gained ~15 lbs in the past year despite eating about 1800 calories a day and exercising 6-7 times a week (185 lbs in 2013, 195 in 2015 and now between 210-215)

Thinning outer third of eye brow, hair shedding like a golden retriever

Scalloped tongue, especially in the morning

Cold hands and feet—hands also turn purple with orange spots

Libido is non-existent: used to be active and now have no desire whatsoever

Brain fog: used to be 4.0 student, when the symptoms started showing, I almost failed out of college (graduated with a 2.3 GPA). Can't remember the simplest of things. Can't compute mental math. And delayed, almost tunnel-vision.

Panic attacks: messed up my head pretty good by having one in a public place. Horribly embarrassing.

Joint pain: exercises are limited because of pain

Shortness of breath: my friends who drink and smoke daily can easily beat me in distance running. I have no stamina at all. 1/4 mile is about my limit before I feel like I'm going to implode

Depression: completely lost interest in all things. My friends go out to the bar and I'll stay at home by myself (half because I don't want to see people when I'm like this and half because I'm afraid of having another panic attack)

My doctor heard most of these complaints and gave me an inhaler for exercise-induced athsma. Said the other things were signs of aging and my thyroid tests were "perfect"

I'm starting to become hopeless because I can tell even my parents think I'm making it up. I attached my results. These tests were taken at around 12:30 EST (A little later than ideal). TSH value was 1.79 (ref: .4-4.0). Does anyone have any advice for what the next step could be?

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7 Replies

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  • The first thing is to talk to members of your family including your aunts and uncles - your parents biological brothers and sisters - and find out if they them or any other family member they know of e.g. great grandparent, great uncle, great aunt had any type of diseases especially that effected their joints or caused hair loss. (People normally remember these but not much else.) In other words find out about your family medical history as much as possible.

    While you are doing that, you need to have tested vitamin B12, folate, vitamin D and ferritin plus a full blood count (also called a complete blood count). Make sure you get the results and ranges. Vitamin B12 deficiency which is also linked to poor folate levels, iron problems which includes testing for ferritin plus other blood cells, vitamin D issues which can be inherited and other blood cell issues can show up in such simple tests. You were told to have them before but you haven't had them done.

    If family members do come up with any possible diseases as all your blood test results come back optimal* then you need to have tests for these.

    There are other things that may also be wrong but until you have had the simple tests and found out about your family medical history there is no point even looking at them as it is simply like looking for a needle in a haystack.

    *This is hardly likely as unfortunately when people are ill with one thing more often than not one or more of their nutrient levels is deficient.

  • go back to your GP along with a relative or friend and say very very loudly ...CENTRAL HYPOTHYROID

    low TSH +Low free t4 and sure free t3 will also be low = Central /pituarity hypothyroid which is very different to the more usual PRIMARY hypothyroid which is likely all your GP knows

    All 5 hypothyroids in my family all have Central Hypothyroid

  • its also vital to get

    ferritin

    folate

    b12

    vit d3

    the only other thing which masks as Hypothyroid is Pernicous Aneamia but i suspect Central Hypothyroid

  • Ask for both thyroid antibodies to be tested - TPO & TG

    Or get full private testing done of all thyroid levels & relevant vitamin/minerals via Medichecks or Blue Horizon (£99)

    See Thyroid Uk website for more info

  • We could give you advice on where to get testing done in the UK and some parts of the US, but we need to know where you live. The reference ranges and some of the units of measurement make me think it is unlikely you live in the UK.

    You are probably developing hypothyroidism but whether you would get treatment with your current results, I can't say. You wouldn't in the UK.

    TSH: 1.79 uIU/mL (ref: 0.4-4.0) ---- 39% of the way through the reference range

    FT3: 2.9 pg/mL (ref: 2.3-4.2) ---- 32% of the way through the reference range

    FT4: 0.9 ng/dL (ref: 0.8-1.8) ---- 10% of the way through the reference range

    With the results above I'm not surprised that you feel awful. Most of us would do. I would have expected your TSH to be higher than it is, but perhaps you have a pituitary or hypothalamus which is not performing as well as it should do.

    You probably have low nutrients. And they can make people feel awful. You really need to ask for Vitamin B12, folate, ferritin, iron, vitamin D to be tested and then get the results including reference ranges. Then post them on here in a new post and ask for feedback.

    In the absence of a hypothyroidism diagnosis, you should concentrate on optimising your nutrients levels.

    I would recommend that you don't exercise other than the odd gentle walk or swim. You don't have much Free T3 (and it is low Free T3 which gives people hypothyroidism symptoms), and using up what you have on running is not a good idea because you can't easily replace it.

    You might find something useful in this link from another forum, showing 22 ways in which thyroid function may be compromised :

    forums.phoenixrising.me/ind...

    Another important thing to be aware of is that trying to diet is likely to make you sicker. It messes up your cortisol and adrenaline levels, and that will lower your thyroid function even further. Eat a healthy diet and don't worry about your cholesterol. Eat plenty of healthy fats, avoid simple sugars, any carbs you eat should be complex carbs, and eat enough protein.

  • Thanks everyone for the replies. I currently reside in the US. I will ask to get those tests you mentioned. Also, I will ask for an extensive family history. I'm worried my Dr will think I'm a hypochondriac, but at this point all I want is to feel better

  • Have you had a cortisol blood test done? You have a lot of the symptoms for Cushing's disease.

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