Hello! I'm new to this site. I was recently diagnosed with Hashimotos nodular thyroiditis. FNA was negative! Thank goodness. Does anyone experiences ear and neck pain associated with Hashimotos? Also, I feel unbalanced most days. I want to feel normal again!
Thank you in advance!
Welcome to the forum
Do you have any recent blood test results to add
Have you started on levothyroxine ?
Common to have tight or swollen thyroid. Can be painful and/or difficult swallowing
Have you had ultrasound scan of thyroid
It's been a long year and a half. I have had hypo since 2013, Levo at 50mcg now because I gained 20 plus pounds in a few short months Jul-Oct 2019. Concern taken to my GP and GYN, but both said it was post menopausal symptoms, but I knew it was more than that. My TSH levels have always been in good range 2.5uIU/ml. In a nut shell, since Jan 2020, I have had vertigo, dizziness; an "off" feeling, and a pain in my right ear, and neck. I was treated for an earache 3 times, with antibiotics and steroids, but really didn't work. At one point I had a high heart rate, sweating, confusion, depression, right side headache, right side eye lid twitch, burning in throat, extremely weak. Damn CoVID got in the way, not that I had it, but doctors would not see me. I took myself to the hospital 3 times: CT scan, MRI, blood work all normal. Given valium and sent home. Went to 2 different ENT's for ear pain, was scoped through nose, had balance tests, tried PT for vertigo... nothing worked. I feel as though I was being choked out. My GP said I was suffering from anxiety which only made me more frustrated. FINALLY, an endocrinologist, via Telemed, saw that I needed help. My body was so weak, I had a sway. A simple urine test, showed my iodine level was fatally low. Fasting glucose test showed that my insulin is too high, glucose is fine. Iron levels too high. He says I have thick blood. Ultrasound of thyroid shows a 11mm nodule on the right side near my carotid artery. Thank goodness the FNA was negative for cancer. Taking vitamin D, fish oil, magnesium, vitamin B12, liquid iodine, brazil nuts for selenium, metformin, and of course levo. Even though I'm better than I was a few month ago, the ear pain and neck pain remain. I was a fitness instructor, muscular/fit, but now I'm weak and lost all of my muscle.
I hate not feeling like myself.
Oh my I’m sorry you are going through that I have the same symptoms I have had a swollen burning throat where my tonsils were and ear and neck pain for 5 months now I have had every test known to man and all comes back clear I’m so miserable I was also very active in fitness and now I have no energy constant pain in my throat neck and ear this is a learning process I thought I was dying at one point this is no joke I hope you find some relief soon
OMG! I'm sorry that you have this awful feeling as well. I felt like I was dying too. My poor husband tries so hard to understand and help. Odd to say but I'm glad to hear that someone understands how I feel! one day at a time, right?
50mcg levothyroxine is only a starter dose
Dose should be increased slowly upwards in 25mcg steps until on full replacement dose
Levothyroxine doesn’t top up failing thyroid it replaces it
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Likely very low vitamin levels if been left under medicated
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Awesome info! Thank you. My endo said he likes my levels at 50mcg.
But you aren’t well
On adequately treated dose levothyroxine you should be able to lead a completely normal life
Levothyroxine doesn’t “top up” failing thyroid. It replaces it. So you need high enough dose.
Gotcha! I'm seeing endo in a few weeks...I will talk about this AGAIN! I'm so frustrated!
Always do all thyroid tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Most important results are ALWAYS Ft3 followed by Ft4. Both should be at least 60% through range. Ft4 often needs to be higher in order to get Ft3 over 60% through range
TSH is not a thyroid hormone. On levothyroxine, TSH is likely to be under one, or lower when adequately treated
Extremely important to test vitamin levels at least annually and maintain all four at GOOD levels
England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
See reply by Diogenes in this post
healthunlocked.com/thyroidu...
the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing
academic.oup.com/jcem/artic...
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures.
It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range.
However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
My TSH levels have always been in good range 2.5uIU/ml.
On levothyroxine most important results are ALWAYS ft3 followed by Ft4
Most people when adequately treated will have TSH well under one
When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Hashimoto’s frequently results in gluten intolerance
Have you had coeliac blood test
Are you on strictly gluten free diet
Levothyroxine contains iodine, when adequately treated you should be getting high enough dose iodine
Iodine not generally recommended for anyone with Hashimoto’s.
thyroidpharmacist.com/artic...
Are you vegetarian or vegan
When were vitamin D, folate, ferritin and B12 last tested
Metaformin lowers B12
independentnurse.co.uk/clin...
I'm taking all of these questions to my doctor! Thank you!!!!
315NY
Welcome to our forum.
Lymph glands (nodes) are located in the neck, armpit & groin. They filter the lymphatic fluid, store special cells that trap bacteria and are a part of the bodies immune response.
Hashimoto’s is an autoimmune disease which means the body’s immune system attacks it own cells//tissues and the lymph glands are principal sites where many immune reactions are initiated. I suffered neck & ear pain in varying degrees all my life and which was only alleviated after becoming optimally medicated with thyroid hormone replacement years later.
Unfortunately the standard care for a Hashimoto’s patient is to wait until the immune system has destroyed enough thyroid tissue to classify them as hypothyroid and then prescribe Levothyroxine to replace missing hormones, but this doesn’t address the immune response or the results of an ongoing imbalanced immune system.
Improperly treated Hashimoto's can result in a myriad of health issues such as gut issues, nutrient deficiencies & anaemia, as well as the usual hypo symptoms of weight gain, cold intolerance, hair loss, fatigue, etc as the thyroid meds replacements struggle to work.
I experienced about a year of vertigo after starting Levothyroxine and looking back now attribute it mainly to compromised adrenals glands, but because so much other was also wrong, it was probably more of a collective approach that got me right in the end.
Your first point of call would be to get thyroid hormone levels tested, including FT3 which most NHS providers won't do. Therefore, many members use private testing and post results (including ranges) for members to comment on.
Member is in USA
Oh didn’t read other 🤪. Maybe O/P can have FT3 tested more easily? I don’t know. Maybe someone more knowledgable will be able to advise.
Hi. I am going through the same thing. tight neck, pain, also feel like i am being choked. Pain in both sides of my neck, jaw and constant pain in my right ear, my face/nose/sinuses feels like its going to explode and top it off just started feeling dizzy/lightheaded. I to have had numerous scans, tests, everything comes back negative. The only thing that i have been diagnosed with as well as hypothyroidism is Fibro myalgia. Also a recent scan showed my thyroid was small. My GP has been really good but i think i will need to speak to him again. I am at a point that i am sick of me, so he must be.😂 the only comfort i have is reading other peoples post and knowing that im not alone. Hope you are feeling better soon x
Actually from my stand point YES thyroid issues can cause balance troubles I suffered for many years feeling “choked out” as you stated and constantly feeling like I was on a wobble board and then years after my issues started I started to gain weird amount of weight which was not normal for me considering I too was a fitness instructor and a runner and extremely active but it was always chalked up to menopause or Im too active.
I did have a thyroid nodule for many years and was always told it was normal .... eventually the above mentioned issues became a nightmare and I was diagnosed with thyroid cancer and had to have a thyroidectomy in 2016. My health has drastically changed but all of my balance issues have subsided.
Wow! I'm sorry that you had to go thru the cancer bit. But happy to hear balance issues are gone. Doc did say that a partial thyroidectomy could be an option to relieve my pains , but I'm not so sure?
I have had throat neck and ear pain for the last 5 months sorry you are going through that I hope you find relief soon but this group is so good such caring people willing to help I thought I was alone with this disorder I’m so glad I found this place
It's horrible, isn't it? I'm happy I found this group. Any good tips for relief?
It is horrible I have to say. are you on a gluten free diet?I was advised to do that I feel a little better but not much maybe it just takes time
Slowdragon and humanbean in this group are amazing well everyone is really but they are very informative have you had your vitamin D levels checked
We have to advocate for ourselves my drs have given up on me
You can try chiropractic for pain that is what I am doing now
Hope you get some relief
My diet is pretty clean, however, I do like my chocolate! Can't give up EVERYTHING! Vitamin D was very low, but I've increased my dosage to 5000iu as I live in the northeast of US. I crave the sunshine!! I tried chiropractor and massage therapies but only left to feel more inflamed so it's a fail.
Hope you feel better too!
Thank you for your kindness.
Your welcome no worries anytime and yeah I love my chocolate too and I love the sun too I love In Florida so yeah I feel ya on that one
Just know that you are not alone
All that you say chimes with my experiences over the last three years. I can't add anything on the prescribing front, optimum levels on co-factors like vitamin d etc but did want to say something that has helped me with ear, nose and throat pain in the long term. Antibiotics were'nt relevant for the symptoms. So besides medication, supplements and changing my diet I have learnt about supporting the nervous system through daily physical exercises and breathing techniques. The stress / symptoms of Hashimotos and feelings of not being in control have put huge stress on my adrenal system. Also the immune system I have learnt is affected by stress immensely. So I've added to my medical process other steps which overtime have reduced the scale of my symptoms. I've found that exercises supporting the vagus nerve in particular have helped manage pain in the ear, head and eye axis. Over the last 18 months the sinus issues for me have been helped by diet change, steroid nasal spray and self- head massage every day (5mins) of the vagus nerve. By taking it slowly and overtime I think it's allowed my body to slowly calm down - anxiety reduced, bp slowly steadier, less reactive. I'm still having issues with medication but at least I have some things I can do myself that support my immune and nervous system.
Thank you for responding, I’m interested in the exercise that you do to support the vagus nerve.
So sorry I didn't respond to your message. Wasn't sure how to find you tube link but have worked it out now!youtu.be/gHBpHl0oebo
This is a basic exercise for connecting the vagus nerve with eye movement.
If you search on you tube - vagus nerve there are other videos. I did some reading via Google about what is the vagus nerve and tension, stress etc and lots popped up. I now do the basic exercise most nights and I am starting to sleep much bettet, have less ringing in ears and generally calmer.
My view now is to support my body with a mix strategies. No magic bullet sadly but self care, supplements, gentle exercise and medication have stabilized my immune system and gave far less weird random symptoms popping. If I do have an immune reaction I tend to up my regime first and then if not working try antibiotics.
Hope you get some relief. Come back if you have any questions.
Testing options in USA listed in reply from humanbean here
Interesting. Maybe a neurologist could help?
My neurologist wasn't mush help either. I basically got a lecture on eating healthy and adding a smoothie to my regimen....seriously not worth the copay
I’ve had one sided neck discomfort but with bilateral ringing in the ears (without ear pain). I failed a recent DEXA scan so had assumed the discomfort was from decalcification & I was not attributing it directly to Hashimotos. It is reassuring to know that others also have some ongoing neck discomfort & haven’t keeled over!
No kidding! All joking aside, I agree that it is comforting to know others have the same symptoms. Here’s to our good days and may the bad ones be mild!
Does anyone have knowledge or experience of Hashimotos and a keto diet?
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Does anyone else have a aching throat and neck with acid reflux with under active thyroid?
