I feel like I am dying and no one understands or believes me. I am on Methimazole and have Graves Disease and diagnosed in February 2019. They say I am mild Graves but I feel anything but mild with my anxiety, depression and fear almost every single day.
I have been to the ER twice had CT Scan of my head and chest, MRI of my back and X-Ray of my neck and back. The pain now is in my neck and radiates down my shoulder and arm. I have hip pain too that radiates down my leg but not nearly as severe as my shoulder pain. I do have a herniated disc and pinched nerve in my neck. I also went through a severe tooth infection recently.
Been to my Internist, ENT, Cardiologist, Orthopedic Surgeon, 2 dentists, 2 Endocrinologists, neurologist, dermatologist and 2 gynecologist etc. The ER 2 times freaking out that I had a brain tumor. Always sent home and told to follow up with a specialist. All Scans came back ok.
Now I am in physical therapy 2 times a week and doing Acupuncture once a week. I cannot relax and my body is in knots thinking I am dying and no one found what was wrong with me yet.
If I went through the list of how may times I've been sick with ailments from sore throats, severe sinus infections, chest pains, heart palpitations, headaches, body and muscle aches. IT is insane!
I am taking B12 and D3 daily. I just added Vitamin C today because I get sick so much. I was on antibiotics so many times and even given the steroid Prednisone for 14 days due to the pain and severe sinus infection I had (only affected by left side which was so weird). I also take Turmeric Curcumin to help with my inflammation and take a Probiotic and Prebiotic. I am down to Methimazole 4 days a week.
I have taken Gluten, Dairy and Soy out of my diet. I even stopped seafood! I am so scared to eat anything bad and have it affect me.
Before I was diagnosed. I took a cold for what is was, a cold and didn't freak out. Now I am this paranoid person who thinks I am dying and no one knows what I am dying from or I have a cancer they haven't found yet.
I am also 48 years old with 3 children ages 8, 11 and 18. I feel like I am so uptight and miserable. I also may be going through menopause during all this. I hate being this way. I just want to know I am not dying from this.
My husband keeps saying there is nothing else they can check. I tell myself he's right and think my head will clear of this insanity after a positive doctors visit. Then a couple of days or even a day later I am insane again!
Before being diagnosed I worked out all the time. I got up early and went to bed late. I was always the one taking care of the family and usually didn't get sick except for maybe 1 time a year. Now I have been sick since January!
Why is this doing this to me? Anyone else get these muscle and joint pains and feel so low? Does this feeling go away??
going for blood tests in about two weeks. I think I am normal levels about 2.2 on TSH. People tell me we start to feel better about 1. I don't know. My mind is telling me differently!
THANK YOU!!
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Kim327
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It is a most scary time. I spent a lot of time in bed feeling so ill and like I was going to die. Then there is the anxiety and the panic attacks. I was on carbimazole for the hyper and citalopram for the anxiety. Just going out the front door was a challenge.
It worked out for me and it will do for you. Hang in there. Take little steps. Don't beat yourself up for what you can't do...you are ill and your body is doing this too you. The real you is still there just waiting to reappear.
If you're going to have blood tests you should get your essential vitamin levels tested too, ferritin, folate, B12 and vit D. Even though you are supplementing they might not be OK. Get calcium levels tested and Consider asking for a DEXA scan for bone density due to all the muscle pain and tooth problems you've had.
Both hyperthyroidism and prednisone can reduce calcium levels in bone and women take a hit at menopause as the drop I. estrogen causes greater loss of calcium and poor absorption.
Unless you are allergic to dairy it might not be helpful to remove from diet. Instead, get the best organic grass fed cattle dairy products to optimise nutrient levels.
When taking vitamin D3 you need to also take the cofactors, K2-MK7 and magnesium. Magnesium helps calcium absorption. Prunes contain boron and magnesium, good for bones and digestion too.
It's very likely an imbalance of nutrients making you unwell so don't panic and imagine all sorts of things without any evidence. Just get the blood tests done and start there. You can start taking K2-MK7 and a good magnesium spray right away.
Thank you for all the helpful information! I actually do have my vitamins tested every 5 weeks. They cut back my B12 because it was so high.
What is a DEXA scan? I will definitely look into that! I am getting calcium drinking hemp milk. I am going to reintroduce dairy . I only stopped it because I read somewhere it would help get rid of Graves Disease. I think that was a mistake for me due to my issues with muscle and joint pain.
I just wanted to add to the ‘hang in there’ support; the anxiety will pass. Ensuring that your vitamins are optimal, you are eating a balanced diet with sufficient calories to help your body heal and that you are taking the correct dose of thyroid medication is such a tricky balance. Worrying will only make things worse; I should know as I’ve experienced crippling anxiety from the effects of my thyroid. I would recommend trying meditation to help you relax- I like the Mark Williams Mindfulness book/CD and App. Taking magnesium has also helped me sleep. Take care and keep posting- you will always have support in this forum!
It's definitely worth a try, Many of us find that stress makes our symptoms worse, and stress and anxiety are in themselves symptoms of Graves' so it becomes a bit of a vicious circle. If yoga or meditation aren't for you, listening to calming music, going for a gentle walk in the countryside, a massge....whatever helps you to relax.
I know that many of you are in the UK and this may not resonate with you, but during a time when I was in constant pain, one of the things that would help me relax was listening to The Beach Boy's "Endless Summer " album. ... You can probably find it on YouTube.
I also have graves and spent 4 years feeling like you do as it took a while to diagnose. My levels bounced around a lot and the did all the same tests, brain scans and MRIs. Once they got a good level from meds I felt much better but found citalapram made me worse as my endocrine system was such a mess, also meditating really helped me to survive this time.
They did a thyroidectomy in January and I officially have my life back! I honestly didn’t believe I would ever feel ok again but it can happen.
It seems not 😭 had a good run of about 8 months and then it all started again, wild palpitations shaking and feeling awful, gradually getting worse. They changed my HRT and fiddled with my thyroxine dose but still feeling awful. Lovely GP referred me back to endocrinologist but they are insisting that it’s no longer a thyroid problem as blood tests say everything is fine, I am just about to lose my third job over this and am so fed up with being ill all the time.
Can you post some of your blood results and what dose you are taking at the moment? It might be better if you started another thread so other members can help and advise you. x
I’m just wondering if you could ask to be given beta blockers (slow release) - these slightly reduce t3 and are often given for graves although I’m not sure about alongside the other medication.
I took these for many years with a slightly raised amount of thyroxine to counteract the reduction. Now I’m older I do find I get awful neck issues linked to stress; how I hold my shoulders and neck. I’ve also been on a bit too much thyroxine at times and I remember it was the neck and shoulder areas that were the worst.
Thyroid things take a horribly long time to settle both blood wise, physically and also mentally (they have a big knock on effect to the brain.) you will feel better one day I promise! Xx
Yes, was on Beta Blockers when first diagnosed. Stopped them when I started to feel hypo and doc said it could cause depression.
I do sit at a desk with poor posture. I’m working on improving that. My neck seems to affect my sinuses too. Has me crazy but feeling good one day and worse others. I’m stretching and going to keep trying whatever I can to think positive and push through!
You’re words are so encouraging and hopeful! Thank you so much for reaching out and helping me through this difficult time! So happy you’re feeling better and hope you can eliminate stress in your life! Stress is one thing I need to try to avoid. I have way too much!
I was about to pop the ‘M’ word into my reply and then saw you had already covered it. It may be that the Menopause is at the root of the problems. In April I was a mess with agony in shoulders, hips, knees. I couldn’t sleep, I felt exhausted and permanently tearful (I was 51 then). I had convinced myself I had bone cancer (none of this is me - I am definitely a ‘glass half full’ kind of person). I sat in my doctors room and wept. Blood tests showed a slight elevation in Sedimentation test and doc suspected PMR. Rheumatology can’t see me until late December plus I am very worried about going onto steroids. After a few weeks of research about how menopause and perimenopause can cause lack of hydration within joints, I went back to dr and asked if they would consider letting me try HRT. The results have been very effective - I needed one dose change- but now the aches and pains have reduced to a 1/2 level from a 8/9. The only down side is that I’m now experiencing the migraine type auras that I used to get mid cycle when I was at my fertile best! For me it was worth trying options and I am still seeing a rheumatologist in December. Oh, also hypothyroid but have been for over 12 years.
Thank you for your reply! You’re story is helping me greatly with the mental side of this fear I have every day. Hope you are feeling 100% better soon! ❌⭕️
I'm not sure I can add anything to what I've already written.
The worst thing for me, with this disease, is that overall the medical profession do not understand anything relating to the autoimmune component of the disease.
Personally I felt as though I'd been written off as the knowledge isn't there -
They will throw certain AT medications at you, which may control some of the most alarming symptoms but ultimately, if the disease doesn't respond to these drugs the medical profession suggest destroying the thyroid gland - and then it's " game over " for them.
I hope you took a look at the Elaine Moore website, it has definitely helped me in my understanding, but there again, I've learnt of my situation back to front.
I became more ill from the RAI treatment than living through the " active phase " that you are currently trying to deal with.
Hi there. I felt like I was reading about myself there!! I'm 47 with 2 older kids. I have hashimito thyroiditis, fibromyalgia, allergies to just about every medication going (got worse post hysterectomy) and have now got weird involuntary eyelid fluttering when I shut my eyes. I wake up every day with headaches or migraines. I am waiting for a laparoscopy (gynae) , but can't have it until I find an antihistamine I don't react to. I'm having appointments roughly every other week for something... Allergy clinic, drug challenges, mri, neurologist and have given up with endocrinologist!
I'm not going to lie, i always did have a but of health anxiety, but when you have real issues that you have every day, it does blow it out of the water!
I feel for you as like me you just want to feel well for 1 day with no pain and if yiu can't get an answer it's so frustrating.
Anxiety and depression do make you feel awful so just make sure you research the symptoms for both too whilst you are on Dr Google! They can be very physical too. All the best x
I hope you feel better soon! My thoughts are with you! It’s terrible all you’re going through. Thank you for caring to reach out to me and tell me your story! All the best! XO
What took the left pain away? I'm 1 yr. After total thyroidectomy and still not feeling well and, my calves hurt so much that I don't want to do anything but stay home. Magnesium doesn't help 😢
I had my T4/T3 reduced and within a couple of weeks I was pretty much was pain free.
My TSH lab number was .<14 and I started to feel like I was having hyper symptoms my hands shook bad so I decided to go from 2 grains armour thyroid to a combo T4/T3 meds. I know people are going to say TSH doesn’t matter but my hand shaking was freaking me out so I just reduced and just recently increased my T4 meds kept T3 the same and I’ve been good pains have reduced even more.
I also gave psoriatic arthritis and self inject biologic meds.
Thank you for sharing. I do feel hyper from being overmedicated. It's so hard to find the right dosage! I switched from NP thyroid to Tirosint just recently and I'm on 125 mgc of tirosint and 5 mcg of cytomel. It doesn't seem like a high dosage being that I don't have a thyroid? But I am a little shaky...ugh
Hi. I totally sympathise with how you are feeling. I felt rubbish with graves until I had a thyroidectomy. Then things calmed down but I have always felt some level of unwell ness and lots of muscle pain, lack of energy etc. Over the years things got worse, I developed allergies and then, after a bout of shingles, discovered a serious B12 deficiency. Every other day injections transformed my muscle pain, fatigue and general health. I also switched to taking NDT for thyroid which helped too. As you are taking B12 supplements, any testing will be pointless until it is out of your system. I would suggest researching this and retesting it and folate once you’ve been off it a while. It may well not be B12 related but autoimmune deficiencies do seem to go hand in hand. There are a couple of great books on B12 deficiency if it turns out you are low. I wish you well, hang in there. Btw, I am not medically trained and can only offer my experience.
Thank you for your reply! My Endo said my B12 was too high so cut my dose. I’m on d3 and was thinking of adding magnesium. Not sure though. Taking so many pills plus vitamin C, turmeric, iron, thyroid meds....ugh! I feel like I’m 80 with a daily pills pack! All the best to you! XO
If taking B12 supplements, any testing of it won’t be accurate. You would need to come off for a while to see how much it drops. There’s not a lot of knowledge of B12. Maybe read ‘Could it be B12?’ Or look at the pernicious anaemia society website. I wish you well.
I thought I was perimenopausal until bloods showed hypothyroidism. After a year I started to get muscle aches especially in shoulder area and truck area with it travelling down my leg. Also terrible thigh pain (like I’d walked for miles). Very stiff too. Got bloods done and was pmr positive (polymyalgia). Goes hand in hand with hypothyroidism as is an auto immune disease. Given 15mg prednisilone and now down to 6mg. No pain or stiffness whatsoever! On 150 thyroxine. Don’t know what I’ll be like when steroids will be finished next year. Good luck. Keep on at your doctor
Some more empathy from me - it’s a horrible time but does get better. Do yoga, meditate, avoid stress, eat a whole food diet with lotsa protein and let yourself be sick. I have stumbled across “kultured wellness” and it does help listening to their videos. I am trying to heal my gut at the moment and no longer do coffee, dairy or grains, however it is 3 yrs since I was diagnosed with Graves and menopause so I’m at a different point in the healing process.
When I had full blown Graves I stopped coffee and did a meditation every afternoon followed by a nap. I also quit work as a teacher as the anxiety was terrible.
Thank you! Keep taking care of you! Hope you’re gut heals. I’m taking a probiotic and prebiotic. Not sure if the doctor has recommended this for you? Xo
Now I am in physical therapy 2 times a week and doing Acupuncture once a week. I cannot relax and my body is in knots thinking I am dying and no one found what was wrong with me yet.
One possibility that occurs to me is that your cortisol levels may be too low or too high. My personal experience of high cortisol levels is that I couldn't relax either. I'm hypothyroid not hyperthyroid, and there is a strong relationship between the thyroid and the adrenal glands in everyone. It is the adrenal glands, which sit on top of the kidneys, which make cortisol.
The best way of checking cortisol is with a 4-part cortisol test that also includes a result for DHEA - not all cortisol saliva testing includes DHEA, but it should. The other thing to check in connection with saliva cortisol testing is what the reference ranges are. Quite a few companies in the UK which test cortisol do so with reference ranges which start at zero. As I've often said, someone having zero cortisol is probably a healthy corpse. Real reference ranges are necessary, and that does not include ranges with zero at the bottom!
Do you live in the US? If you do then you can find companies that do saliva cortisol testing without involving a doctor or your insurance company in the US from this link :
Find the sentence which starts "PLACES TO ORDER YOUR OWN TESTS–The first five are US-based. "
...
There are other things that can make it virtually impossible to relax. For example, the wrong levels of calcium and/or magnesium. Most of the people on the planet are low in magnesium, and supplementation is worthwhile. Testing magnesium is very unreliable and not really worth doing. The kidneys will expel excess magnesium if they are reasonably healthy.
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Calcium can also cause problems, but before thinking about supplementation it is essential to test calcium with a blood test. Too much calcium can be dangerous. Low calcium can cause a condition called tetany which could make someone so tense that they can't relax their muscles. I don't know if this is exactly what you are describing.
High phosphate can cause tetany too, according to that link. I don't know anything at all about phosphate - I have no medical training.
From personal experience I also know that low iron can increase my anxiety, and it also makes it almost impossible to relax, and I get cramps and spasms galore with low iron.
People with hyperthyroidism use up nutrients too quickly which could cause you to be low in lots of different minerals and vitamins. You should get tested for as many as you can.
Thank you for your reply! I’m on B12, Iron and D3. I was thinking of adding magnesium. I have it just taking so many pills. I do get calcium from food. I’ve been reading a lot of labels lately. I will definitely research the info you sent and look for testing. Thank you so much! I really don’t know what I would do without people like you and everyone who contributes to this site. XO
and decide which one is likely to suit you best. You should be aiming to take roughly between 250mg and 400mg per day. Some forms of magnesium make people sleepy so it is best taken in the evening. Some forms of magnesium supplement in a high dose give people diarrhoea so beware of that. Doctors sometimes use high dose magnesium supplementation to empty the gut and the bowel before surgery. But normal amounts of magnesium supplement are unlikely to cause problems in that respect for the majority of people.
I also feel like I’m a bit hyper. Bowel movements are easy and two or more times a day. Hard to gain weight. Just staying around 123. Was as low as 116 when first diagnosed 9 months ago. I’m 5’ 5”. I figured menopause would make me gain weight. I guess the Graves and probiotic are helping with my gut issues. Always had tummy issues prior to Graves diagnosis. Just don’t know if the low weight is also due to my bones and deterioration.
So sorry. I feel the same. My thyroid was removed and I'm asthmatic. This paining that paining. I even went to my doctor and asked for a doctor who had no thyroid gland and also asthmatic. He smiled and said there is no doctor like that. I wanted cry punch the wall and everything else. I went through hell at 35 went into menopause for 10 long years. Now at 60 I'm at peace no more don't want to wake up but have to. Kids are grown up husband still working nights. I keep my chest warm and calm avoid taking puffers. I'm now on lactose free thyroid tablets. At last I'm feeling great. I hope you all the best. Take care
So sorry to hear how you suffered but thrilled to hear you’re now feeling great! Thank you for your kind words and story! Having all these stories help me greatly to feel I am not crazy and have hope! All the best for continued good health! X0
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