Chronic head/neck jaw & balance issues !!! Can anybody plz help me at all - more than four months ago I started getting sinus problems which then escalated into chronic burning head neuralgia & neck pain along with balance issues & tinnitus ! I have a underactive thyroid but my gp keeps saying it’s within normal range ! Seen a neurologist & he says it’s tension headache which I can 100% say it is not !! It’s continual & to the point where I find it even difficult to put my head on a pillow ! I thought it was occipital neuralgia but he says it is not !! I’m also 49 & just had blood tests for menopause done & waiting on results !! Anybody plz can you give me any advice x Thanku
CHRONIC HEAD/NECK & JAW PAIN - diagnosed Hypoth... - Thyroid UK
CHRONIC HEAD/NECK & JAW PAIN - diagnosed Hypothyroid & maybe menopausal symptoms
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Toto88
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Have you had your vitamin levels tested?
I have by the Gp yes but they say the B12 test they do on the NHS is not the active one so therefore is not a true reflection of it. I am thinking of seeing a herbalist because I realise that you need to be v aware of what & at what time you need to take vitamins.
I would get a proper set of vitamin tests before seeing any kind of herbalist. You will probably uncover the root of your problems without paying out lots of money needlessly. If GP will not do tests then you can get them done through Medichecks or Blue Horizon online labs.
Avoid TEVA if that's what you've been taking as it has caused a lot of people problems. Almus is Actavis packaged by Almus and is a good alternative if you've been fine on it before. I had terrible problems as a result of TEVA.
Essential to test vit D, B12, folate and ferritin. If you've had them done, what were they?
Yes I looked at both those sites - was going to get the full thyroid 15 test done to see if I had T3 in me ? Nearly £200 for just that test though - the NHS have continually done the main tests - I will ask what ranges they are but I would have no idea what is optimal for each ? If I get these & my thyroid panel would the admin on here beable to help me plz ?
shawsAdministrator
Welcome to our forum Toto88.
You will not be surprised that it seems that few doctors are aware of any clinical symptoms of hypothyroidism as in these 'modern' times they know none.
Before blood tests were introduced we were diagnosed upon our clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones) made from pigs' thyroid glands. That was in 1892 and before that people just died.
People recovered their health with NDT, no blood tests back them only the skill of the doctors.
Nowadays it seems no doctor has knowledge about how best to diagnose/treat us who have hypo - unless of course they have it themselves.
Doctors seem to be so badly trained that yours is saying that is in 'as your TSH is in normal range' and I assume he's not yet prescribed levothyroxine?
We have to read and learn and ask questions so we become our own professional doctor and members will assist us with their input.
First, this is the method for blood tests:-
Make the earliest possible appointments. Fast (you can drink water) and if you were prescribed levothyroxine you take it after the test and not before:-
1. Always get the very earliest blood test appointment.
2. Fast (you can drink water)
3. Allow a gap of 24 hours between last dose of levo and test and take it afterwards.
4. Ask for your vitamins/minerals to be tested too. Everything has to be optimal. You need B12, Vit D, iron, ferritin and folate tested.
Always get a print-out with the ranges. Ranges are imprortant and permit members to advise on how much of an increase you need.
We need levothyroxine to bring our TSH to 1 or lower (of course they will think you've become 'hypER-thyroid but that isn't the case.
The worst thing (I believe) is that in the UK, they make patients wait until the TSH reaches 10 before prescribing but that's the advice they've been given.
Other countries prescribe when the TSH goes above 3 with symptoms.
thyroiduk.org.uk/tuk/testin...
The problem with 'normal range' is that we can be very symptomatic and I'll give a list of symptoms you can tick off.
thyroiduk.org.uk/tuk/about_...
Always get a print-out of your results and ensure ranges are stated. Labs differ in their machines as do ranges and these are needed to enable members to respond to your post.
Thyroid hormones should be taken on an empty stomach with one full glass of water - usual when we awake. Some prefer a bedtime dose.In that case allow about 3 hours between last meal and dose.
Coffee too near your dose wll interfere with the uptake of levo.
Thanks for your reply shaws - I’ve recently read that the levothyroxine brand Teva has caused a lot of problems with patients in France ? I’ve just emailed my pharmacist because that’s what I’ve been on ? I was always on Almus brand & was perfectly fine - I’m just wondering if that has something to do with it ? Have you heard of this plz ? With regards to the lab ranges - what do I ask my Gp for plz ?
Just to add to what Shaws, the administrator, has told you: thyroid problems affect fluids in the middle ear, which can then affect balance, and probably all the sinuses, causing pain. That would be my explanation for why so many of us have this kind of pain and balance problems. There are similar fluid changes in the eye and a strong association with glaucoma and hypothyroidism. You need to get your T3 tested. Don't stick with a doctor who cannot open his mind and heart to your reality; find another, possibly through this forum. (I'm in Australia.)
Sinus issues (like I have had along with the beginnings of TMJ) often occur with poor conversion. This may actually have its roots in hypochloridia (low stomach acid). Guess what you need for good stomach acid levels though - t3! It's so frustrating that in order to make t3 you need t3! The way I started to improve stomach acid was to take Betaine HCl with meals. I now just take ascorbic acid with Celtic salt before meals. Another thing that is important, is to have a healthy liver. So much relies on a good liver in treating hypothyroidism. The problem you have sounds a lot like TMJ (look it up) and taking NAC which is a good liver detoxer is known to help. Also follow advice on vitamins and minerals and don't forget to take Magnesium if you need to boost your vitamin D levels.
ncbi.nlm.nih.gov/m/pubmed/2...
Article on using NAC to relieve TMJ.
I have a hiatal hernia in my stomach & years ago I did take pantaprozale but I no longer take anything? Could that be causing problems maybe ?
I have had a night dental brace made by my dentist & even Botox done in the last month into the mandible joint ! That’s how chronic my pain has been - I’m still waiting for a miracle but the head pain is the worse !
When I was given levothyroxine as I could not obtain NDT, I became thyrotoxic as I do not convert T4 to T3 (I now take T3 only). During this time I was very unwell, so unwell that I didn’t know that I was but had 24-hour headaches. When I finally obtained NDT again the headaches went.
Hi Penny - I’ve had this chronic headache every day for more than 4 months - are u UK based at all plz & if so where did you find a private Gp of obtain T3 ?
Hi Toto88, I am in the UK and self-medicate as my GP stopped my T3 without notice about 5 years’ ago. By the way, I was recommended Vit D by the private doctor who diagnosed my hypothyroidism (symptoms for 30 years).
I don’t understand how u say you self medicate ? Surely if you don’t have any thyroxine in your body you would go into a coma & eventually your heart would stop ? So do u mean you buy the T3 yourself from somewhere ? Sorry I’m confused penny ?
I def have underactive thyroid & been diagnosed ! Some say too much Levo gives you headaches - others say too little also causes this problem ! But I def have chronic tinnitus - every day chronic burning head neuralgia & chronic neck pain / jaw pain ! When I was on 50 Mcg continually & then 50 mcg one day / 75 mg the next my thyroid panels came back exactly the same ‘normal’ which to me makes no sense ! I will def have to look at my panels -
hi advice no , i can understand what is happening to you, sometimes the joint and body stiffness hurts alot. keep taking the meds given to you, and ask the doctor if you can take paracetomal to ease the pain. also cod liver oil helps the stiffness in joints, i hope it passes soon.x
Sounds rather like a lack of vitamin D to me. Have you had it tested?
Why would you say it POSs could be lack of vitamin D plz ??
Head, neck pain and balance issues are all vit D and or thyroid. Tests are required because it sounds rather like my symptoms, which did turn out to be low vit D.
Ok thanks for that & was there a certain amount of vitamin D you took plz ? Was your thyroid under at the time aswell can u remember ?
My TSH ,4 months ago .... 1.3. FT3. 4.31. FT4. 8.5( below range 11.0/ 23.00). I have not had it re tested. D was 61 which was half what it was 2 years ago. I took 9000 better you spray and cofactors for 4 months and D is now 206. Neck pain almost unnoticeable , constant headache gone , balance fine. And my energy is great. Hair regrowing.
Would a 1000 iu in Vitamin D3 be enough to take every day meme plz ?
I’m interested in this spray you have mentioned plz - where do u purchase it from ? I’m still no better with my neck/head - jaw problems & no meds have touched the pain ! I’ve just start HRT patches & progesterone pills to see if that may help but the nausea is awful ! Any help would be a god send x
This sounds awful Toto88, I would recommend that you keep going back to the GP until your symptoms are properly investigated and you are given a diagnosis. I know this is difficult, my daughter is a vet and when asked by the doctor what she wanted him to do replied "well I am a vet and without any verbal communication I diagnose and I'd like you to work out what's wrong". The reply was "Oh I've heard this from vets before"!! But keep at it, as my daughter is doing, you need to know the cause so that you can explore treatments and/or pain relief.
I really hope you soon feel better.
Thank you for your well wishes - still no better & havg physio once a week which isn’t helping yet ! I’m seeing private endocrinologist who maybe able to prescribe T3 ! I’ve just started HRT patches & progesterone pills to see if that may help - only been a week & already nauseous! X
Ah, I might be able to help with the nausea, having recently started on HRT (synthetic as I can't bear the thought of horses being cross-tied so we can take their urine) myself, a gel. I needed less so the GP told me to use half a dose and the nausea has gone.
I really hope you soon find someone who can tell you what's wrong and that you soon feel much better. X
Hi Toto88
Sorry you're dealing with such pain. I can relate all too well. I am 48 years old and think I am in menopause and I have Graves Disease. I went from Hyper to Hypo and now I am not sure what I am considered. Just not normal!
When I first was diagnosed and before I had headaches every single day. I have neck pain on my left side into my jaw and ear and radiates into my shoulders and arms. I also have hip pain that radiates down my legs but not as bad as my neck, ear and shoulder. Once side is worse than the other for me (my left). I still get headaches just not as bad as they were.
My right side still has pain now and then. Its like the left side of my jaw, ear, shoulder, and arm. I get sinus pressure on the left side too. I went to an ENT and was put on a steroid and antibiotic for sinus infection then I got Oral Thrush which now I fear may have spread and has been a problem longer than I thought. Prior to that I had a tooth infection and the numerous times I have been put on antibiotic over the last 10 months I can't even count. The sinus pressure still remains on my left side of my face just not as severe since treatment from ENT. However, it is still there! I use eucalyptus steam and nasal sprays given by my ENT to help.
I also went to a neurologist who said I have a pinched nerve in my neck causing my head, ear and neck pain/pressure... I do have a herniated disc in my neck. I keep thinking its something else no one has found yet. I have had 2 CT Scans (chest and brain), neck x ray, neck sonogram, and MRI of my back. I think it is all my thyroid. Wednesday I am going back to an Orthopedic Surgeon.
I get a lot of sore throats, muscle and body aches, headaches, ear aches, hip pain, back pain, etc. I used to have heart palpitations all the time but they have subsided to only on occasion. Anxiety is a whole other thing associated with the disease. I am on methimazole 2.5 mg 4 times a week. My TSH was 2.2 six weeks ago and awaiting my new lab results now. My ENDO says he wants me at 1 to feel better (or that's what he said most people feel better at. I wouldn't know!)
I was told about turmeric Curcumin for inflammation and muscle pain. I take it every day. I find it helps. I also use a magnesium spray at night before bed. I spray it on the bottom of my feet. I don't put it on the painful areas (as recommended) because it caused skin irritation for me.
I also just started Oil of Oregano too. This I was told helps with sinuses, bacteria such as Thrush or any sore throat or flu like symptoms in replace of an antibiotic and all natural. People say they take it as soon as they have a sign of a cold or sore throat and it goes away. I just started yesterday so I am not sure if it works and suggest researching if you think you may have these same issues.
I also take B-Complex and B12, D3, Iron as well as a prebiotic and probiotic. I am now on a gluten free diet. I also avoid diary but do get my calcium with HEMP Milk and non dairy yogurts and cheeses. I also never have soy.
I feel like I am 80 and I am only 48. I am also probably going through menopause and have not had my period In 3 months. since I have been diagnosed in February 2019 I either have my period for 16 days or not at all.
I have been to 2 different ENDO's, Neurologist, ENT, Primary Care, Urgent Care, the ER, eye doctor, dermatologist, gastroenterologist, cardiologist, orthopedic surgeon, OBGYN etc. since I have been diagnosed. In comparison to how I was my whole life, prior to Graves I only went to my OB once a year and think it was 3 years before I saw my primary care. Now I am this crazy hypochondriac who is always sick and have seen every doctor under the sun.
I just started acupuncture a month ago and I am very happy with it. She is an MD who recommended the Oil of Oregano for my sinuses and congestion. I was told Yoga would be good for me to open everything up. I only did yoga one day and will try for 3 times a week.
Stress and anxiety of this entire disease is probably the worst. I think the tension we have and stress of the illness goes to shoulders and neck to create even more pain. Every time I go to physical therapy they tell me I am too tense and need to relax. I just can't relax or stay calm.
Not sure if any of this relates to you at all, but I hope my experience helps you feel a little better to know that you are not alone. Unfortunately, I have heard all too often...."My levels are normal but I still feel awful!" Hang in there!!
I hope you feel better soon!!!
Hi Kim - I cant remember whether I’ve messaged you or not because there are other ladies on here I’ve been chatting with too. It’s really weird how you say yours all started with sinus problems / tooth infection ? That’s exactly how mine started ! It took awhile to get rid of the sinus problems - my nostrils were completely closed & I tried sprays etc from ENT - antibiotics- took ages for it to get better but then I was left with facial/jaw pain - left side mainly - chronic neck pain - burning head neuralgia which sometimes feels like it’s in a vice ! Piercing pain behind my left eye & my balance is horrendous! I have chronic tinnitus & ear fullness/pain ! I’ve seen a neurologist whose put me on Amitriptyline- got to 40mg & then the nausea kicked in & so I’m back at 30mg - I take Clonazepam because of the constant muscle spasms in my neck & it takes the edge of the head pain sometimes! I’ve got a thoracic disc out & im waiting on a neck MRI - was hoping they would do all my spine but not sure if they are going to ! Ive found out as of last week that I’m def post menopausal so I’m thinking of starting HRT to see if that helps - you can apparently get vestibular migraine which can cause neck pain & there is an association with that type of headache due to hormonal changes ! I paid to see the neurologist & he’s the one sending me for an urgent neck MRI ! V strange how your symptoms are like mine - how did you find out you had Graves’ disease ? Is that different to hypothyroidism then - I have terrible anxiety & try to relax but when you’re in pain it’s v difficult! How have you been recently plz ?
Hi Toto88!
Yes we have spoken before. Sorry you’re feeling as dreadful as me!!!
I was ready to go to ER tonight but going to wait and try to get MRI tomorrow. My doctor gave me a script. I am calling around to see who is open Sunday first thing and pray they take me!
I have constant sore throats and Thrush now from all the antibiotics. I’m tense, stressed, depressed and scared out of my mind I have a tumor or cancer in my neck
I found out I had Graves after feeling so ill and went to my GP for blood tests / physical . My TSH was 000.1. I was so sick, couldn’t sleep, trembling and shaking , hot flashes and heart palpitation, muscle pains and aches. Just miserable. I was hyper.
I hope your MRI is okay! Glad you’re getting it done! This is the last scan for me. I’ve had everything scanned but my neck. I did a head scan and nothing. Did chest CT scan and a spine MRI.
I just need this to end and know what’s going on. This combination with menopause is making me so tense and unhappy. I’m ruining everyone’s life around me for being so tired sick and miserable.
I hope you find your answers and feel better soon too!!
Xoxox
I have jaw pain and ear
Pain too. Left side. All on the left only. Even my sinuses just one side. It’s crazy! Can’t believe we have the same symptoms!
I was diagnosed with Graves in February/March of this year for hyperthyroidism. Went on medication for hyper by my GP in March. Not sure if I clarified that. I started to feel better at first but then fell apart again. Few days good then..bang back to pain and suffering!
Are you the same? When where you diagnosed hypo? Are you Hashis?
Be well!
Hi Kim - just touching base with you again to see if you’re any better ? I’ve upped my thyroid drug & might start HRT patches on a low dose to see if that helps x how have u been ? X
Hi Toto88
Thank you for reaching out!!!
How are you? I hope the meds help you!!!!!!!
I am hanging in there.... Its been a very rough two weeks.
I have Candida Overgrowth. So now I have to avoid foods for my thyroid I have be on a Candida to kill the bad fungus. The Candida die-off makes me feel so sick all the time. I constantly have to clear my throat and always have sinus issues. I am exhausted. I feel I have had this longer than I realized and even before diagnosed with my thyroid after all the information I read about it.
I also had a neck MRI last week and I have to go to pain management I have a herniated disc, pinched nerve, bulging disc and scoliosis. I realize I also have TMJ from grinding my teeth in my sleep. I recently purchased a night guard which magically sometimes I pull out in my sleep and makes the next day hell. All the same side as my neck symptoms.
I feel this illness is never ending. If not one problem it is another.
Sorry to be so depressing! I just wish all of this would go away so I can not be the worst person to be around for always being sick and tired.
Sending you prayers and best wishes you are feeling better!!!
XOXO
Hi Kim - I’m still the same too but just wrkg through each day. Upping my thyroid may take awhile to wrk if it’s anything to do with it ! How did you find out you had Candida ? I know a lot of people get v unwell with it ? Why isn’t your oesteopath operating on your disc ? Surely if you’ve a trapped nerve something can be done other than pain management? Have they not suggested you wear a neck collar to see if the nerve becomes untrapped - that’s what I had to wear when I was younger & until it became untrapped ? Muscle relaxants too ? I’m hoping to see my GP this Friday to start on a low dose HRT patch - if it doesn’t wrk or makes me worse then I will just stop it ! I’ve got a night brace too Kim - but I’ve had Botox twice now injected into the mandible & I don’t know whether it’s that or a combi of that - Amitriptyline & clonazepem that’s helping it - maybe give it a try yourself. There also a new treatment called Cerezen for Tmj that has recently come out - it’s basically an ear piece that’s made to fit your ears & by the ear remaining open in the set position it apparently stops you from grinding your teeth at night ! Probs is it costs £1000 because an audiologist makes the impression at your dentists ! Www.cerezen.co.uk - I’m thinking about giving it a go but it’s a lot of money to waste if it doesn’t wrk x I’ve read so much about menopause lately I’m actually quite shocked how ill it can make someone ! It can even cause Tmj - neck stiffness - allergies - sinus problems - migraines to name just a few & that’s all because we don’t have enough estrogen in our bodies ! Did u say your menopausal ? I do hope you get some relief soon Kim - here if you need me ok xx Davina
Hi Davina!!
Sounds like you’re just hanging in there the best you can. I Are you still with your sister?
Any other doctor you can see besides your GP?
I found out about Candida from Oral Thrush when I saw my white tongue had bumps. Scared me! . I went through the whole list of symptoms For Candida Overgrowth and because I was antibiotics so long on and off and then a steroid, I know my Candida was there for a while and added deeply to my symptoms. My tongue has been white for so long I just thought it was from food or drink! Then I saw the bumpS!!! Yikes! What else can happen !
I read a bunch about how bad Candida Overgrowth is and how doctors miss it or don’t even check for it. It’s kind of like your thyroid but even less diagnosed. So many people have it and don’t even know it. With today’s food, over production of antibiotics etc.... it’s just more out there than we know. It affects your mind and body and Doctors put people on antidepressants or antibiotics making matters worse and their diets don’t change. Another horrible problem. I hope you take a good probiotic? I have my kids on them now. Never knew how important they are. So much of our illnesses revolve around our leaky gut.
I’m having more blood tests this week for my thyroid as well as tested for celiac and antibodies for Candida. My ENDO first said they was no test for Candida. Then I sent him the information on antibodies to test and he wrote the script. I had to tell him! There are 3 antibodies to be tested which are IgG, IgA and IgM. Just in case you ever need them!
This last week I had Candida die off symptoms after I started a strict Candida diet and supplements. Makes your entire body hurt and feels like a seriousMy bad flu. Not like one I’ve ever had. I literally thought I was dying. I am taking Milk Thistle to support my liver through.
I am in physical therapy, doing acupuncture and have my appointment for pain management next week. I think the orthopedic said the pinched nerve can be healed. I just don’t know. I’m feeling better though with the mouth guard and therapy. I think the combination of TMJ and neck made me 1000 times more painful.
I still get aches in my shoulder and left arm. Not sure why. It’s just a dull pain that comes during the day. Even my left leg. All too weird. I wake up fine In the morning. Not sure if it’s the Candida, TMJ, Thyroid, Menopause or my back and beck issues ( also have disc degeneration in my back!) I am 48 turning 49 in March and feel like I’m 88 some days! ,
I believe my numbers are Hypo now. I know my thyroid is rapidly changing so a combination of all these symptoms and issues I just can’t figure out which illness is causing what! I am having my blood test for menopause too this week. I believe my estrogen was low in blood tests a few months ago so it makes sense if I’m menopausal.
I’ve heard about the Botox from many people with TMJ. I’d do that for sure!!! I will look into this. Thank you! The Cerezen I’d like to hear reviews on that one before spending the money.. also maybe try the Botox first.
Hope you GP gives your the HRT patch or gets you on the road to feeling back to living life. This crazy disease has us affected in just about every part of our body and minds.
Do you have a good ENDO? I have to tell you my research and help from the great people here has helped me more than any doctor. I’ve been to a dozen specialists. My husband says they are conducting guesswork in a white coat. I’m not saying all doctors. Just no one really has an answer for these illnesses we have. They don’t believe our symptoms nor do they treat them.
Unfortunately on top of me not being on top of my game my Moms colon cancer from 10 years ago returned we learned recently. She’s 81 and alone so I take her to every appointment. Her husband passed away last year. The last 3 months I have taken her to dozens of doctors/tests and she had one surgery 3 weeks ago and stayed with us. I offered to have her move in but she’s not ready fir that. I was so sick and had to take care of her and my kids. I know the stress not good for our conditions! Next week she starts precautionary chemotherapy treatments. they believe they got all the cancer in her surgery.
Are you near menopause?
Please keep me posted of how things go for you this week with you GP. I wish you had a good Endocrinologist!
I wish you everything wonderful and I will pray you start to feel better, and get the care you need to enjoy life!
Please stay in touch and thank you for caring!!!
Xoxoxo
Kim
Hi again Kim - I hope you’re new diet for the Candida is starting to kick in ok now - May take awhile but you will get there 😀! I’m so sorry to hear the news about you’re dear mother but she seems a fighting spirit & hopefully after the chemo she will be back to her normal self. I’m still staying with my sister yes - she’s my carer most of the time because I’m so unwell - takes me to all my appointments & is trying so hard to get me well bless her. I lost my dear mother 8 years ago & my father 6 years ago. I was my mother’s carer & she had brain cancer but only survived 3 months - I wanted her at home though & she passed with no pain which was a blessing ! She was 81 - so I understand totally the stress you are going through Kim !! & I know what stress does to the body !! You know you are most welcome to chat with me through email if you would like to but no pressure ok - I’ve private messaged it ok.
It’s just been lovely chatting with you & to know that you are understood x I wish you all the best Kim & I pray too that you will get better v soon x By the way does the acupuncture really wrk ?
Thank you for your kindness and encouragement!
I am so sorry about your Mom and your Dad. Very sad!!! Thankful your Mom didn’t go through any pain. My Mom is 81 now. She is definitely a fighter.
Your sister sounds like a wonderful person (as do you!). I feel so bad for you and praying you recover!!!!
I am in the US so our times are way off. I’m just getting my boys showered for bed. I will definitely reach out to you for sure in messaging. Please do the same!
Acupuncture is wonderful to unwind and really loses up. I go to a doctor here that does it. I wouldn’t go to just anyone that’s for sure. It he first time I was skeptical she I went but after 20 minutes I felt my body relax like it never ever does. I felt heavy. It’s good to have something help you’re body destress. We all have stress and I guess we’re people who have it affect our health. I don’t know how not to feel stress. Wish I could relax more. I think that’s my entire problem.
Praying for you too and wishing you health and recovery soon! I am here for you too!!
Thank you so much for understanding and being so kind!
Xo
I was diagnosed with hypothyroidism in my late twenties - took levothyroxine for years & had no problems until this year & like I said I started initially with chronic sinusitis which has now gone but I’m left with all this other chronic pain ! Why did your endo say that most people at TSH level 1 is usually the best ? Just curious because mine is 1.46 & that was on 50 mcg Levo a day ! I’m def going to get my panels this wk from the GP & see if when I was well it was nearer to the 1 or something else ? My Gp is absolutely hopeless - my sister is looking after me at the mo - I just feel such a burden so I totally undrstand where you’re coming from. Why are you worrying about throat cancer ? Are u meaning thyroid cancer ? & if so are u havg an ultrasound done ? If you have a pinched nerve in your neck then I would imagine yes that def could be causing the head/neck pain ! So try get that sorted ok xx it is v strange your so similar to me !!!
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have online access to your medical record and blood test results? Look up historical test results
Ask GP to test vitamin levels and thyroid antibodies if not been done
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
50mcg Levothyroxine is only a starter dose. The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Very unlikely to get FT3 tested on NHS. But see what you get from GP
Any missing tests you can get privately
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I just wanted to ask plz why some peoples TSH is better nearer to 1 which you have suggested ? Mine is 1.46 on 50 mcg levothyroxine & I feel awful so I’ve just upped it to 50 mcg one day & 75 mcg the following day to see if it makes a difference? I’m trying to find my thyroid blood panels online from my Gp patient access but haven’t yet been able to get them. If I post them will you beable to help me at all plz ? I’ve also just started taking magnesium & vitamin D to see if that helps with my chronic daily head neck & jaw pain ! & can I also ask you plz - on the NHS blood thyroid panel will a gp automatically test the T3 or is that only done privately through medichecks etc ? Thanks again for your time x
The most important results are FT3 and FT4
For most people FT4 needs to be in top third of range and FT3 at least half way in range
50mcg Levothyroxine is only a starter dose
Strongly recommend you get full Thyroid and vitamin testing 6-8 weeks after your increase to 50/75 alternate days
TSH frequently drops low on Levothyroxine, especially if vitamins are low and/or you have Hashimoto's.
Many people have extremely low TSH on Levothyroxine. As explained here
Last time I had chronic head, neck and jaw pain it was from a vetrebral artery dissection, was like that for almost a month before they caught it, thank god on time I would’ve suffer a stroke and I thought it was from hashis 😳
Thanks for your reply ? How did they manage to find the condition plz because I’ve been down to A&e 5 times & seen gp every week - I’ve paid for a neurologist & he thinks it’s a form of headache which I don’t believe it is because I’ve had it continually since July 9th ! I’ve had a brain MRI which has come back normal & now I’m havg to wait months for a neck MRI ! Could you let me know plz your head & neck/jaw symptoms plz ? Thanks again
I was lucky enough to go to an er where the doctor was knowledgeable enough to think about it, vad or vertebral artery dissection is not so common but it can happen to anyone any time, from getting your hair done to doing yoga to being in a car accident, you need to bring it up to your doctor so they might do a contrast scan around your neck arteries, for me the pain was so bad I thought it was an ear infection and a bad tooth at the same time it also was more prominent on one side of head, also skull pain like actually the out side of my head was painful to the touch, neck pain which would be worst on vertebrae area.. I thank god everyday this doctor caught it on time, the only good thing is that it heals with proper treatment I’m good now .
To Toto88 --- sounds a little like tic duranleau (facial neuritis) like my mom had. She said she had what felt like lightning strikes in her face and jaw and would just about bring her to her knees. During the attacks, she couldn't move her mouth. Suffered with this on and off for 50 years and Tegretol was the only thing she was prescribed that helped at all. Good luck with whatever you have and I wish you well!!!
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