Feeling awful and doctor can't figure it out!

Hello, I have been feeling pretty terrible lately, achy body, tired all the time headaches and blood work has been within in range , but different for me. My TSH went from 2.31 in January 2016 to 3.35 as of 3 weeks ago. This is the highest its ever been. My doctor says Im in a normal range , but i feel terrible and my mother , grandmother and my mothers brothers all had hypothyroidism or hasimotios. I asked my doctor to see an endo doctor, but she said I was not in a range that they would'nt see me. I also had higher cholesterol then before at 214 and vitamin D was lower than usual. I also have a weird feeling something is stuck in my throat. Does any of these symptoms go with thyroid disorder, or should I be looking at something else, and also if my mother and grandmother have hypothyroidism ,am I most likely going to develop a thyroid disease? Oh recently , My lymph nodes on both sides of my neck have become swollen and sore, Any thoughts? Thank you

25 Replies

  • I would strongly recommend you get tested for thyroid antibodies. The blue Horizon finger prick test (you can do it at home) looks at 10 different things, thyroid hormones and vitamin and iron levels.

    Raised cholesterol was how they used to diagnose hypo thyroidism in the past, it should go down when you are treated with levothyroxine. TSH test on its own is not much use, you need to know T4 and T3 levels too as per blue horizon tests. NHS will usually only test TSH these days.

  • Thank you, I will look into this.

  • rjerome,

    Welcome to our forum and sorry to hear you are not feeling well.

    Ask your GP to test thyroid antibodies TPOAb and TGAb as a raised level in either (or both) will confirm Hashimotos.

    Lymph glands (nodes) are located in the neck, around the collarbone, armpit & groin and filter the lymphatic fluid, storing special cells that can trap cancer cells and bacteria.

    They are critical for the body's immune response, as white blood cells (lymphocytes ) infiltrate the thyroid gland in an effort to rid the antibodies. All my lymph glands systematically swelled when I was having Hashi attacks many years ago.

    TSH is variable but an increase with hypo symptoms may show the pituitary gland is having to work harder to encourage further thyroid hormone secretion. As thyroid cells die, hormone eventually becomes delete and thyroid hormone replacement must be medicated.

    Cholesterol is an essential lipid (fat) contained in each of your body’s cells and used to make hormones, Vitamin D, and bile for digestion. It can be raised when thyroid hormone is low as metabolism of all organs will slow.

    Have you had Vit B12, ferritin and folate tested ? ? ... Deficiencies are common in people with low thyroid hormone and are needed for good thyroid hormone synthesis.

    Having your thyroid hormones T4 & T3 tested would be useful. When GP's aren't cooperative, members use private labs - link below.


    Private labs testing


  • Is a thyroid ultrasound also a possibility?

  • Allyson,

    An ultra sound will detect any nodules or goitre, commonly found in patients with thyroid issues.

    Lumps are checked for cancer cells but this will not determine thyroid antibodies. These can be confirmed by a blood test that the GP should perform.

    Lymph nodes usually systematically swell and go down as attacks are variable and won't need an ultra sound scan..

  • I think I will ask my doctor about the ultrasound, I do feel like something is stuck in my throat. Its a weird feeling.

  • Yes I have that too, sometimes with stabbing pain.

    It seems like an ultrasound would be good to look into, given the swelling.

  • Thank you for all the information, I will ask my doctor about testing antibodies TPOab and TGab. I can see from what she already has tested, these tests were not included. My vitamin B was in range , but has dropped since January quit a bit. I used to be around 500, now its at 315. Vitamin D has been low since January and also cholesterol went up to 214. But she didnt seemed concerned about that. But I go back this week because neck is swollen. I have been on antibiotics, but I still feel some discomfort in head and neck.

  • In range is a total nonsense

    your TSH should be 1.0 or below and your free t4 and free t3 both in balance and in upper quadrant of their ranges

    if your doctor does not understand and treat you with that parameter then you need to find one who will

  • I also would suggest you be retested for thyroid. It can come on quite suddenly for some people. Tired, low vitamin D, feeling like something is stuck in your throat, are all symptoms. Raised cholesterol is also a signal.

  • Go back to your GP with the boxing gloves on and INSIST for better treatment, and an Endo appointment (I got one when in the so called flipping range), also the Hashimotos TPO test. I get so angry at these know it naff all GP's ,because I had over 20 odd years of that story in range after 2 x RAi treatment and getting more ill all the time. Don't leave it as long as I did in ignorance. It's your health and your entitlement to better treatment...Best Wishes to you xxx. PS ask for a scan on your throat whilst you are there...I did and got it. Thyroid conditions do run in families, mine included.

  • Could well be thyroid as others have said but also low vit D can make you feel pretty dreadful. You may have to find a better doctor for your thyroid issues, maybe ask you local pharmaist if any local GPs are prescribing T3 or lithothyroxine if they are they are likely to be better doctors for you.Mean while get you low vit d treated.I think you should be put on 10,000iu perday for this and with it you should be taking vit K 2 which you will have to purchase yourself.Make sure you are also tested for ferritin, b12, folate and antibodies as others have suggested. NHS treatment for thyroid issues is so poor a lot of people are paying to see better doctors or as I am treating themselves. It Is more than possible to get well, especially with the help of this forum.

  • As RJ and others have suggested you need to get Thyroid antibodies checked. Given your swollen lymph nodes it's also possible you are in the early stages of a infection (that increases Thyroid demand, would explain your aches and pains and might well raise TSH). Your symptoms could be infection or mild hypothyroidism.

    You said you are having difficulty swallowing, does the bottom of your neck (below the Adam's apple) look normal?

  • I do have a weird feeling, like something is stuck in my throat and my throat seems bigger all around , but I dont have a big adams apple, but it seems swollen a little.

  • As said your two first priorities should be to discuss infection with your GP, and get Thyroid Antibodies checked.

    That area beneath your Adams apple is where your Thyroid is located. It wraps around the front of your throat. I had both difficulty swallowing with tablets getting stuck there and swelling at the base of the neck when I was short of Iodine. If the other two come back negative there's a urine test for Iodine.

  • An Endocrinologist does not always help. YOU ARE UNDER MEDICATED !!!

    You need your free t3 towards the top of the lab range, your free t4 at the very top or just above the top, doctors go by your TSH - forget that!

    Your vitamin d levels are so so so important! They need to be towards the top of the range as this will prevent other illness

    Your ferritin and folate need to be at good levels too.

    Your B12 needs to be AT LEAST 500.

    Where in the country are you?


  • I am not on medication, Hypothyroidism runs in my Moms family and i have been feeling terrible , with raising TSH levels. I Live in U.S . Im just trying to get advice what to do, because my doctor doesnt seem to want to help me and is looking everywhere else but my thyroid.

  • I would look for another doctor, I don't know whether they are called Naturopaths in USA? Whereabouts are you? I have a friend in California who takes armour thyroid.


  • I live In Nevada, Las Vegas

  • What's your Doctor considering?

  • She thinks because I had a positive ANA titer , that I may have arthritis. But the tests she did , did not show positive for antibodies. I asked to see a endocrinologist and she said my numbers weren't high enough. I did read online if you are positive for ANA titer, that is linked to an autoimmune disease , which I would think Thyroid would be that , but she keeps looking everywhere else.

  • Thank you

  • Hi RJ, there are so many ramifications when your thyroid hormone is too low or not being used effectively. Keep pursuing your health. This is a short 5 min. video showing how much the brain is involved.

  • I find it so interesting that your doctor doesn't pay attention to the fact that you have close family members that have thyroid disease! That should be the first clue. They should look at all those family medical issues. IT most certainly runs in families. I have it on both sides of mine. Even Endo's aren't the magic ticket though. I was referred to one last year by my PCP after her and I had a heated discussion over my condition and how it was deteriorating at the time. My Endo doesn't test for anything but TSH which I find infuriating. In fact I just came back from an appt. and was told that a high Rev T3 meant absolutely nothing! If I could afford it I would go to a naturalpath. Good luck, hope you get some good answers. You might have to do some testing privately to get what you need.

  • Thank you, I am going to push my doctor to retest and to considered all symptoms and family history.

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