Can anyone described their hypothyroidism/hashimotos symptoms to me?

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I have an appointment with an endocrinologist in a few days because my tsh is high. And I was wondering if anyone ever had the same symptoms as me. I've got swollen lymph nodes, raspy throat that comes and goes, random body aches and pains, chest pain, migraines, aches in the armpits, thighs, shoulders, behind knees. tingling in the extremities that comes and goes, VERY thin/fine hair, issues losing weight, constipation, and when I don't have constipation I have diarrhea or almost like ibs symptoms. I have had TONS of blood tests. I have seen like 6 different doctors. I had someone say gerd then Lyme disease then lymphoma. I had multiple panels of bloodwork that were normal, scans on my neck and chest (chest was clear). Now I am absolutely paranoid because I feel undiagnosable. Finally a doctor tested my tsh and it was high. My grandma has hypothyroidsm and I know that you're more likely if it's genetic. So let's hope I find an answer.

I just want to read your experiences and stories. Maybe it'll put my mind at ease... most specifically, did anyone else have some swollen lymph nodes?

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  • Edited

    I have Hashimoto's that caused hypothyroidism and also have swollen lymph nodes everywhere.  They are enlarged in my armpits, groin and left side of neck.  I would imagine it is the immune process from Hashimoto's that can cause swollen lymph nodes..  My endo told me that it is not normal to have swollen lymph nodes with Hashi's,  and was diagnosed with generalized lymphadenopathy.   But I have read many stories of other people with Hashimoto's, that also have swollen lymph nodes.  It makes sense, as with all other autoimmune disease, enlarged lymph nodes are a symptom.

    • Posted

      Yes.. sometimes.. Also, a lot of the time , I feel like I have to keep clearing my throat, like there's something in there. It's so annoying.  It also bothers me to have any kind of clothing, scarfs..ect. touching my neck, as it just gives it a very odd tight feeling.

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      Yes, I get random aches all over my body, from sharp pains, to achy feeling, and even weird sensations, such as tingling and tickely feelings.  At one pint I even had what I can only describe as a feeling of cold water running my legs, but nothing was there and my leg was not wet at all either.  Very weird stuff..lol.  Now.. if this has to do with hypothyrodism or not.. I'm not sure.  There are a lot of vitamin deficiencies that go along with hypothyrodism, such as low vitamin D, low iron, low ferritin, low Vit B-12, low magnesium and some others.. so I'm sure these may contribute.  I would say a good multi-vitamin may be helpful.  Also.. about  if tthe areas were the lymph nodes are enlarged ache.. yes, but only the ones that are on the left side of my neck.  They feel sore pretty much all the time.  I can feel them when I turn my head, touch that area, and even chewing food.    Hope this helps..  I would also like to mention that most hypothyrodism is caused by Hashinoto's which is an autoimmune disease, so not only do we all experience symptoms from the hypothyrodism itself, but also from the process of our immune systems going haywire too.  Symptoms can vary from person to person and can also effect the whole body.  When taking levothyroxine, we are only treating a symptom of the Hashimoto's, not the cause.  A healthy diet, good sleeping patterns, low stress, staying away from pesticides, herbicides..ect, and all other toxins, such as mercury, processed foods, sugars, and for some people.. gluten and dairy products, can all help to slow down and even sometimes stop the fauly prosess in our immune systems... 

    • Edited

      Hi Danielle,

      I have this occasionally now. I cant figure out what triggers it. Diet or stress or hormones, who knows. Have you found any help for this?

    • Edited

      ive had a swollen lymph node in my groin for 6 months now. not huge. size about 1.5cm smaller then a grape. chest pains, constipation, throat aches, constant BVs over the past few years, etc. got chest ct and xray came back normal. mutiple blood tests, ultrasounds, then finally and FN biopsy to check for lymphoma. all normal. finally my doctor tested my tsh and mine came back over 1,000. she diagnosed me woth hashimotos. said that my lmyph node should not be swollen as well in my groin so it worries me that maybe it is something else. it def reassures me seeing so many other people with the same problems. ive been scared the last 6 months thinking its lymphoma. still crosses my mind because it aches here and there as well as the other side that is NOT swollen. ive had hernia mesh surgey in both spots. getting the lmpth node removed in the next month just to be safe.

    • Posted

      Had to make an account for this one because I was shocked at how similar our predicaments are. I mean seriously I scared myself for a year thinking I had lymphoma, and I'm still indefinite on if it should be ruled out just yet.

      I am a 24 year old male. I have been dealing with chronic groin pain for the past three years. Most of the pain in located where I had hernia surgery as a baby. This includes inflammation and swelling in the pubic and groin area. CT scans came back clean.

      Within the past year or so, however, I have gained a wide variety of new and random symptoms (some of which I have found out are because I have LPR (silent reflux). The rest include swollen and sometimes itchy armpits, heart palpitations/chest flutters, thyroid and neck pain, nervousness and shakiness, irritability, etc. I went and got a thyroid ultrasound and found out I have a multi-nodular goiter. My ENT doctor doesn't suspect the nodules to be cancerous and doesn't want to do a FN biopsy yet, however he wants me to test for Hashimoto's antibodies. Personally, I would think that my symptoms more so suggest that I have HYPERthyroidism, which could always be a sign of Grave's. I'm not sure if this blood work can rule out Grave's as well, or if that would have to be separate testing. Either way I still seem to have various issues with many parts of my lymphatic system. Hoping I am just crazy. Maybe I will get some resolution here soon after additional blood work.

    • Posted

      I also have been having the weird tingly feeling and aches and pains off and on! I have a lymph node under one arm that always seems a little swollen but is only sensitive around that time of month. I have also been feeling like im losing more hair than normal in the shower but just figured it was me being anxious. After reading some of these comments im wondering if i should get my thyroid levels checked out.

  • Posted

    I had most of your symptoms.

    Most have now gone including lymoh mode swelling in the groin.

    Tiredness remains although no longer debilitating.

    Weight is very slowly going downwards after an almost 3 stone gain.

    Voice is now normal and lumpy feeling has gone.

    Restless legs no longer a problem.

    One year on thyroxine and it's been a trial but I am slowly getting better.

    I too have been tested for everything else including liver, kidneys, cancers etc.

    Hang on in until they get your treatment right.

    • Posted

      I'm just so nervous now after the one doctor mentioned lymphoma. My lymph nodes are definitely not huge. But they do cause achiness and pains, mostly in my neck. A few in my groin. And I'm not sure if there are any in my armpits because I don't feel anything but my armpits do ache like crazy. What was your tsh at? Mine was 7.26 and the doctor told me it is high but everyone's "high" is different. So that could be high for me but not for someone else. I haven't had any of the other routine thyroid blood tests yet. I'm just so nervous. I'm in so much pain everyday. My insomnia last night was insane.

  • Posted

    I have all of these symptoms too, terrible pains at times under armpits and groin I can't feel lumps under armpits but very sore to the touch and ache all the time, I can feel glands up in groin, neck and jaw. Terrible pain in rib cage and sternum paranoid I have a heart problem ! I too have been checked for cancers and told glands shouldn't be a symptom of hypothyroidism but I have read so many people who complain of this. The list of symptoms certainly for me are massive, I believe hypothyroidism can affect just about anything especially if left untreated and is more advanced if you like .. my biggest paranoia is my heart constant palps and awareness of heartbeats with irregular bpm but ecg show no problem, sometimes the anxiety takes over for us 

  • Edited

    I read all of your symptoms and had to laugh to myself. Not that it's laughable...it's not. But in the land of hypothyroidism it's all a mystery. I've been to some of the "best" endocrinologists around and quite frankly...they're worthless. Maybe 5 years ago I was diagnosed with hypothyroidism (my TSH was over 200....yes, over 200) and since then it's been a wild ride. I didn't do well on Synhroid so was changed to Armour Thyroid, which I did better on for awhile. My TSH has gone from .5 to 64 in one month, and vice versa. 

    I found a lot of useful information (more useful than any doctor has advised me) from Stop the Thyroid Madness

    And all of the symptoms you've mentioned are things I go through pretty much all the time. There are good days and bad days - and basically I just try to cope as best I can. My biggest help has been cutting out ALL gluten and eating very carefully. 

    Good luckrolleyes 

  • Edited

    Hey guys. I have just been told I have sub clinical- hypothyroidism. My levels are currently 10.55, I have not started medication as I feel I am not ready yet. I have been having chest pains in the middle to both sides and sometimes feels like it's in my ribs. I also have a lump in my armpit but only one side. I have been to doctor who ultra sounded is and said it was just a swollen lymph node. But it's not going down? Is this normal with this condition. My mum had breast cancer so I'm really worried. Any help would be great 

    • Edited

      Hi Elsie

      when I was first diagnosed last year my TSH was around 26 so fairly high as is yours, I had almost the exact same symptoms as you describe, went to docs with chest pains and pains under my arms too .. my GP told me that hypothyroidism won’t cause this however many people seem to have this symptom. These pains did start to go away a few Months after I started treatment. Pains in chest .. odd one I had several ECG’s all came back ok and eventually had a holter monitor over 24hrs again came back ok, told it was anxiety. Try not to worry too much pains and aches are very symptomatic of hypothyroidism. I felt like a hypochondriac at times but I do feel from personal experience that you will not get better without medication, every cell in your body needs this hormone and you will feel unwell until you are at the correct level. As I said I started treatment last April and I’m still not there yet TSH around 8.4 on last blood test, yet others respond very quickly 

    • Posted

      Hey Matt. Yeah I'm 22 so all very new to me had never even heard of it before! Really REALLY reassuring that you have had the same symptoms! I've not started treatment yet, was in a debate about starting them because doctor said  I could wait too see if they get high. I do suffer from anxiety so this could all be equalling to chest pains etc. 

    • Posted

      Hey Matt. Yeah I'm 22 so all very new to me had never even heard of it before! Really REALLY reassuring that you have had the same symptoms! I've not started treatment yet, was in a debate about starting them because doctor said  I could wait too see if they get high. I do suffer from anxiety so this could all be equalling to chest pains etc. 

    • Posted

      I would see another doctor in my opinion, not many GP’s really understand it is n my experience there is no way you should not be on medication with a TSH of over 10. There’s no doubt in my mind you will feel poorly, tired anxious and even depressed at this level, sub clinical is  probably near high 1 to 2 - have a look at thyroid uk to see the long long list of associated symptoms. My chest pains started and then got tingling in my arm and hands was petrified I was having heart issues lol like you, both my mum and Dad have had cancer and it is always at the back of your mind. It will only get worse if you don’t start your meds as your thyroid can’t produce enough thyroxine for your organs my biggest bug bear even now is breathlessness, when TSH drops it gets better but for some reason it then goes high again however GP won’t text me for autoimmune antibodies to see if I have hashimotos trying to get referred to an endocrinologist 

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