Thyroid: Taking health into your own hands

britfitt94
britfitt94 Posts: 4 Member
edited December 19 in Health and Weight Loss
So I'm not officially diagnosed with Hashimotos but after extensive research and record keeping of my symptoms it seems like a very probable fit. I've had to take my health into my own hands because every primary care physician I've had uses the watch and wait approach instead of preventative care. My symptoms started over a decade ago with hormone issues and have progressed immensely.

I now have a multi-nodular goiter that often hurts. My doctor says the thyroid never hurts though so I'm not sure what to make of that. I also have chronic fatigue, joint pain, brain fog, forgetfulness, intolerance to cold, constipation, dry skin and hair, night sweats, anxiety, weight gain, frequent infections, sleep problems, and the list goes on.

My blood work is "normal" so I keep getting told that they are just going to monitor me with 6 month ultrasounds and yearly blood work. I hate this because they are basically telling me to continue living my life feeling sick.

I love living an active lifestyle and am normally very ambitious. Lately I have no motivation or energy to get through the day. Not being able to get a restful nights sleep isn't helping.

My ultrasounds are suspicious but I guess not suspicious enough to do more than monitor? I pushed for an MRI of an enlarged lymph node in my neck. It's been enlarged for months and I thought it was a muscle knot. It hurts but they wanted to wait another 3 months before doing the MRI. Glad I could convince them to do it sooner. I have tenderness in my right armpit too. I had a cyst there a couple years ago so it could just be another one but I'm worried it might be a lymph node. I also have nodular lymphoid hyperplasia in my rectum.

I also had a severe case of Valley Fever around this time last year even though I grew up in the Southwest.

So many health issues and no one has made any real connections yet. Has anyone else had this much trouble with their diagnosis? If anyone has any words of encouragement that would be nice. It's hard not to feel like it's all in your head when doctors just tell you "you need to exercise more" or "you need to learn how to deal with stress better" or "just eat better". (I've worked on all these things by the way with no long term success).

Despite the lack of energy and motivation I'm still trying to be proactive. I'm still in school and still working a great job. I've been looking into the work of Dr. Isabella Wentz and Dr. Lauren DeVille who both have great insights in functional medicine. I'm focusing on diet and stress while trying to remain lightly active. I have good days and bad days but I'm hoping things get better for me and not worse.

What are some of your thyroid experiences?
What are some things you do to keep energy levels up and stay motivated?

Thanks for listening!

Replies

  • Crafty_camper123
    Crafty_camper123 Posts: 1,440 Member
    Is this your GP you're dealing with? If you're feeling bad, and your doc keeps going for wait and see approach, perhaps it's time to see an endocrinologist or another doctor for a second opinion and a full thyroid work up? (assuming they're not testing everything that can be tested) Perhaps there is a missing piece of the puzzle for you? Have they tested TSH only? T3 and T4? Thyroid antibodies?
  • britfitt94
    britfitt94 Posts: 4 Member
    Crafty_camper123 wrote: »
    Is this your GP you're dealing with? If you're feeling bad, and your doc keeps going for wait and see approach, perhaps it's time to see an endocrinologist or another doctor for a second opinion and a full thyroid work up? (assuming they're not testing everything that can be tested) Perhaps there is a missing piece of the puzzle for you? Have they tested TSH only? T3 and T4? Thyroid antibodies?

    This is my GP. I haven't had much luck finding a good one yet. I need a referral for an Endocrinologist which I basically had to beg for. I'm just waiting for them to call me to set my appointment. It's already been a week so I just had them resend the referral. They definitely have not tested for anibodies. Only TSH and free t4. This doctor doesn't seem to know anything about thyriod so getting more blood work done is not going to be easy. Going to see if I can find someone else in my network, again...
  • debtay123
    debtay123 Posts: 1,327 Member
    If your GP won't refer you to an endocrinologist- you may need to get another GP- your health has to come first- don't wait forever- give them a reasonable time- then be proactive-
  • youngmomtaz
    youngmomtaz Posts: 1,075 Member
    It took over 10 years for my tsh to be “bad enough” for them to treat me or even test my free t3 and free t4. And see that free t3 was below the chart range. It still is. But my gp treats based on tsh. And in Manitoba I have no hope of seeing an endo unless they deem me a hard to treat or specialty case. I feel for you, I suffered with all of your symptoms for years! I never had the goiter or node pain, but constipation, crazy brain fog, debilitating fatigue, digestive issues, etc. Keep on looking for a doc who will listen, advocate for yourself, and get those tests done! It does sound like you have a lot going on!
  • Moondoggie9155
    Moondoggie9155 Posts: 16 Member
    Your story was mine. Drs taking watch and wait.
    I sought doctor after doctor till someone helped. I tested my own blood work through life extension to monitor my numbers by my symptoms and took everything to various drs till I found both GP and holistic dr to help. bTw endows were useless.
    I am now on armour thyroid.
    Does this help you I don’t know except to say there is help out there and you do have power over your health care.
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    I'm another who had to find a doctor who would deal with my symptoms and not just a TSH test. It took a while.

    I've heard some naturopaths are more wiling to treat to symptoms and not just a test, but they can be just as wrong as the doctors. Be your own advocate is my advice.

  • Safari_Gal
    Safari_Gal Posts: 888 Member
    @britfitt94 - where are you located? There are some great doctors out there- research and referrals and go talk to them for a consultation. My endo and GP in NYC have been great finds. I’ve had thyroid issues for years and they have been treating with success.

  • lorrpb
    lorrpb Posts: 11,463 Member
    I agree about seeing an endocrinologist. Ask to talk to the referral coordinator at your GP office and ask then to call endo office to check on referral. Don’t just keep resending forms. It might just add to the delay.
    Find out where they’re referring you and call them yourself and ask if they received the referral. I find offices to be rather lax in keeping on top of referrals.
    Depending on your health plan, your GP might get charged or penalized for the cost of specialists, so that might explain the reluctance to refer. Good luck.
  • deannalfisher
    deannalfisher Posts: 5,600 Member
    cluna2017 wrote: »
    I had a painful lump in my thyroid that would make me feel like I was choking st time. I went to my GP and she was rude and dismissive. My blood work was normal for several years when I complained of aches, pain and depression she acted like I was drug seeking!! I am an RN and I have never asked for narcotics in my life!!
    I pushed to have my lump checked out and found out that I have Papillary Thyriod Cancer! It was removed Nov 13, 2018. And when the biopsied the lump I also was diagnosed with hashimotos
    This explains soooo many of my symptoms Please find a new doctor!!

    I was the same - I remember the surgeon coming in the day after my thyroid was removed and asking me if I knew I had hashimoto’s...
  • deannalfisher
    deannalfisher Posts: 5,600 Member
    Agree with others - you need a recommendation to an endocrinoligist - I recommend checking the American thyroid association website for a doctor who specializes in thyroid issues (while all endocrinologists will treat finding one who specifically focused was a help to me)

    A MRI likely won’t show anything - after my unltrasound was suspicious - my endo has a needle biopsy done (it is done by a radiologist typically) - that willdiagnose any issues with your goiter (mine was papillary thyroid cancer and it was temivedin 2014)

    Also functional medicine - ehhh just be very very careful - it’s not a speciality that is controlled by medical boards and tends to get some serious quacks
  • KungfuPandin
    KungfuPandin Posts: 90 Member
    I have premature menopause. It started for me when I was 37yrs old. I can relate to some of the things you say. It's really tough. Hormones put of whack is so so hard..no one understands unless they experience this. Because menopause is not supposed to happen this early, my body has been really unwell.. like really mental..women need hormones to protect them from developing serioys illnesses . I have all the usual menopausal symptoms but it's the bone disease and cardiovacular disease which is really upsetting me. Its upsetting I might not loose weight but who gives a toss when you are thinking you have 50/50 chance of a wheelchair in your 40s! Apparently estrogen protects your bones and heart I never knew this.. my GP never told me. I have another illness which I need medication for and sadly this medication errodes bone density.. I have been on this medication for half My life! My endocrinologist was the only person to catch early signs of osteoporosis!! Osteoperosis is a silent disease..i wouldnt have known until I broke a bone probably my hip bone.. So its vital younger women in menopause get enough estrogen. But too much causes cancer.. so its also vital younger women are protected from cancer risks with estrogen by also taking enough progesterone... the endocrinologist is a specialist in getting this balance right. I'm on hormone treatments but they are not at the right levels yet. Hopefully they will be soon... I'm not bothered by the night sweats, the insomnia, the crippling fatigue... I'm scared of ending up crippled for life at 40yrs old. My endocrinologist was by far the best person. She is an expert in my condition, an expert in hormones, has put me on new hormones and encouraged me in the most strong way to exercise high impact cardio and weights. She will prescribe osteoporosis meds for me as my bones are not great ☹. But I'm so relieved to know that it might be ok. She provided such good support and data that I was able to see how I could be supported, why I need to take hormones, and most importantly why I need to take a huge focus on my fitness because exercise might actually reverse my bone density. She was very passionate about it. Most importantly, it gave me hope. Now I feel like I can have some control about it all.

    My advice is to find a GP you trust, get a referral for an endo, do the gazzilion tests and whilst this is happening focus hard on the things you can control.. your diet and exercise might be an area that you might be able to put changes in to give you the greatest advantage to fight what ever illness that you have, manage symptoms or even protect you from developing one!
    I know that exercise really helps me manage my symptoms. I'm so sorry this is happening. I had a lot of fear around my diagnosis and of course it makes me feel old. I hear it can be hard to get a diagnosis sometimes.. you sound like you are doing the best you can. Hang in there.
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