Can anyone advise me if having graves causes body aches and pain. I have been getting knee’s, hip’s, shoulder and back pain. My knees have started to crack.
I was diagnosed Last Thursday with graves but have been under a endocrinologist for 4.5 years, I have a goiter sizing 5, and a couple of nodules sizing around 1.4
Last year my thyroid levels went over active for a few months, they medicated me with 10mg of carbamazole. Then April this year I was told something about antibodies and now have graves.
I have had change in menstrual periods and change in my bowls. I was told by the endocrinologist this has nothing to do with graves, and told by my doctor today it does. I am so confused
Any advice would be much appreciated
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Graves does absolutely cause body aches a pain & disrupts period & causes digestive issues.
Why would you endo say it’s not related? Did your specialist suggest you discuss unrelated symptoms with GP by any chance - as they do that a lot!
What has endocrinologist told you for last 4.5 years? Presumably there has been an endocrine abnormality or they wouldn’t be monitoring you.
I didn’t know goitres have a “sizing”. I have a large 5cm nodule on one side - no one’s ever graded it. I want to know my score now…
Do your nodules hyper function?
Did your hyperthyroid levels only last a few months? As transient hyper suggests a different thyroid condition.
10mg is a very low starting dose. Did the dose change or stop?
There’s a number of different thyroid antibodies and many specialist don’t distinguish between them. They see low TSH and assume you have Graves.
Which antibodies were tested? You need
Thyroid-Stimulating Immunoglobulin (TSI) Or
TSH receptor antibodies (TRAb)
To confirm Graves.
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies) do not only confirm Graves they are present with under active autoimmune.
If Graves suspected this MUST be confirmed with TRab or TSI.
What are you recent results? Do you have copies or able to view them online?
For full thyroid function you need
TSH. This is a pituitary hormone which stimulates thyroid. Low mean levels are high. High mean levels are low & thyroid should work harder- its not reliable. But doctors focus on the ‘Thyroid Stimulating Hormone’ believing it’s fool proof.
FT4. Thyroxine
FT3 triiodothyronine
Also important to test
Folate
Ferritin
Vitamin D
B12
Nutrients often low with Graves.
Issues with Gluten also common with Graves. Blood test can rule out gluten allergy (coeliac) but not intolerance.
So even it test negative trail strictly gluten free diet.
Hi thank you for quick response, just to explain a bit more
I spoke to endo on Thursday and she said I have Graves’ disease, I am waiting to receive blood test results which was done in April then I will upload
Regarding the doctor I asked because the endo said it wouldn’t cause me to have digestive problems and so I thought it was something else
It started 4 n half years ago when my dad noticed a lump in my throat, then the blood test showed as the doctor describe “slightly overactive thyroid” no medication needed
Apologies as I meant my nodule is 5cm with two other smaller ones.
2 years in I started getting heart palpitations, sweating and pain in legs. Endo said levels are only slightly over so no meds. Last year I spoke to another endo who was standing in, he referred for 24 hour ecg. I chased results for 3 months, kept getting told to be patient and if anything was wrong they would have contacted me. 6 months later, I get called into cardiologist and told I have a problem with my heart! January this year sent in for esp, with ablation. Turns out I have multi focal atrial tachycardia !My endo is back by then and says it’s tottaly unrelated , but now decide to medicate me 5mg, I tell them I still feel I’ll and they upped to 10mg
A couple of weeks ago I h had a emergency scan on neck because it’s now causing me to feel some pulling up to my ear, they said it’s not grown just changed shape
Thursday phone call with endo, I have Graves’ disease from aprils blood test (which is confusing because I rang for results and was told I was stable). They have decided to remove the whole thyroid
March this year I vomited blood and had to have a blood transfusion. Apparently not related too
I really am confused, I will upload blood results if I ever receive them
I feel lost as I can’t seem to get through to the docs or the endo about my symptoms all these years
This all sounds horrendous. What caused the vomiting of blood?
Do you have acid reflux issues?
Usually with Graves - levels seemingly go exceptionally high very quickly.
From what you describe with being slightly overactive for a long time sounds like me. I have a Hyper function nodule . Also known as toxic or hot nodule. Took years to gradually rise. I was negative for autoimmune so an uptake scan examined function.
I’m also really surprised they didn’t immediately treat even “slightly hyper” levels as quite frankly doctors tend to “freak” at the hint of high levels (low TSH) and use Carbimazole to correct them as they view it as causing issues with heart & bones.
You now have A fib and I’m quite suspicious they are saying that’s unrelated.
Request historical copies of medical record. Usually health records departments have a form to complete. You’ll likely need a ID and witness signature on form.
From the sound of it the physical size of the thyroid is necessitating surgery regardless of what the function is doing so it might be the best course of action in the long term, although I know how horrible it is to have things taken out of your own control. Especially as doctors don’t seem to offer time for explanation of why & what’s happening or a proper discussion of every possible option.
Before you have surgery insist on full thyroid function, antibodies & nutrients (listed above) you will need to have a baseline to compare after surgery and the effect becoming hypothyroid can cause to nutrients to drop.
Do you have other health conditions? What medication do you take?
You might like to post on main thyroid forum. They many member of there including lots of member who have had a thyroidectomy.
It has been a worry, I had no health problems before the lump was spotted (apart from anxiety) I have been having problems with my eyes, sunken bags, whites of the eyes blood shot, slightly bigger and sensitive to sun. It has been mentioned this to doctors many times, thankfully now my endo is referring to see a ompotholigist (not sure on spelling)
After blood transfusion I waited 3 weeks for endoscopy and put on Omeprazole . Results was a small hiatus hernia (think it’s classed as level 1) and mild gastris, no lesions on any reason for bleed . Last week I had a sigmonoscopy and again found nothing. I am waiting on pelvic and abdomen scan but don’t feel like they will find anything as it’s been too long. I may never know
With the thyroid, I was told my case is a strange one. They have now said on Thursday it could be related to my heart, which annoys me as they had been saying it wasn’t, which left me for a long time thinking what is going wrong with my body.
And yes your quite right about the doctors not having time for explanation’s, I feel like a fool when I try to explain to others about it as I just don’t understand any of it. All I know is I don’t feel myself at all, fatigue, aches and pains, stomach trouble, lack of period, anxiety, eye sensitivity, intolerance to heat, crying and raging for no reason.
I am hoping that once it’s out and they get my levels Correct I will feel like me again. I hope that is what happens anyway
Oh and also can I ask if a red rash can happen across the cheeks and nose with graves ?
It’s good you have a ophthalmology appointment. Graves has high association with thyroid eye disease (TED). Serious complications are rare. DO NOT Google the condition and panic over worst case scenarios.
If you have Graves antibodies it can’t be disputed as not related.
I have many of the eye symptoms but get dismissed over it as no evidence of autoimmune so I self manage it.
Many members find TED charitable trust as a excellent information source.
You can sign up for an information pack & they have a Facebook link too.
They can help find a specialist.
Main signs are
* Change in the appearance of the eyes (usually staring or bulging eyes)
* A feeling of grittiness in the eyes or excessive dryness in the eyes
* Watery eyes
* Intolerance of bright lights
* Swelling or feeling of fullness in upper or lower eyelids
* New bags under the eyes
* Redness of the lids and eyes
* Blurred or double vision
* Pain in or behind the eye, especially when looking up, down or sideways
* Difficulty moving the eye
Opticians are usually helpful too & can write a letter for referral & recommends drop. Drops should be preservative free.
Take 200mcg selenium at first but this should dose should only be taken for 6 months. Then reduce to 100mcg . Preservative free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I found warm compresses helped with this & very gentle massage toward lash line. This “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water.
If you like to moisturise near your eye area use water based clear gels not cream/lotions. I did this as developed milia white spots round eye. I found the swelling reduced when I switched.
If your TSH has been low with FT4 & FT3 never above range. Then the carbimazole was used *before* you became hyperthyroid - based on TSH.
TSH 0.31 (0.35 - 3.50) was your lowest TSH & that only just below range. (TSH of 0.31 was the highest mine has been in over 7 years) once “hyper’ the TSH is not reliable.
The FT4 is currently low (by most ranges) & FT3 just under mid range *but that is a guess and accurate interpretation would depend on the correct range*
Low FT4 / FT3 could account for the symptoms you described.
There’s no positive results for either a Trab or TSI antibody test. Which would be evidence of Graves.
It extremely unusual for rising hyper levels to be recognised & treated before reaching over range with Graves.
Request historical medical record from hospital . The hospital may have tested earlier, medics do not always check and assume all low TSH is Graves.
I don’t think they tested me for antibodies until April, I could be wrong
Reason being is last year when I was unwell, I would ring the endo team for the results, I kept being told the results was fine. So I never looked in to the blood test results myself (they was not sending me results either, probably because of the pandemic maybe) so I just took it as not related to my illness (started to think it’s in my head)
I was told you are slightly over active but shouldn’t cause me symptoms
What I did notice is on the blood forms last year it was stated (thyroid nodules) and then in April it said (graves) on the forms
Could it be that they was not testing the antibodies before ?
Doctors don’t tend to test TRab unless levels are over active (the FT4 FT3 or frees). When was the test? It does take longer to process than other tests. Likely only tested 1x is used for diagnosis only.
TSH doesn’t cause symptoms as it’s only function is the tell the thyroid to increase & decrease production of hormone. It’s the levels that causes symptoms.
If the TSH is low it usually in response to high Frees - doctors think you are “hyper” . But your levels were not high over range so you were not hyper (or thyrotoxic). Which is why they claim you are “hyper” …based in TSH but shouldn’t have symptoms if frees in range. Not exactly true…
Range is what is normal for most people. Example - Size 4 - 8 shoe is average size shoe of a woman. but you wouldn’t feel very comfortable in a size 4 if you need a size 8. A you wouldn’t be a happy customer if the sales assistant said what’s the problem that’s an average fit for your group.
You weren’t hyper thyroid it was the TSH which was was low. Doctors say lowering the frees will raise the TSH.
Were your symptoms worse / different before starting because your thyroid levels are now on low side.
Trab measure antibodies affecting the TSH receptors which includes stimulating, neural & blocking antibodies - so high blocking would cause hypo. but test is not conducted for those who are hypo.
The test that showed antibodies was done in April this year
Last year when they said I was “hyper” only slightly, I had problems with heat, was feeling very hot,sweating and anxious . I also had aches and pains in my legs and shoulders.
Since April I have had loose stools, anxious with palpitations, Change in menstrual (which started in January) aches and pains in knees, legs and shoulders, eyes are bigger and sensitive to light and heat intolerance. Also I am awake earlier then usual and have a lot of nervous energy
They have been doing my bloods for a few years so I may have some results in my paperwork. Will upload soon
The endo did say to me a few weeks back that mine was a strange case
Those are very hyper type symptoms. I wonder if your TSH being low but in range the FT4 & FT3 were not tested. (It automatically ‘dropped’ by lab). It was brushed off as “in range” and therefore “symptoms free” but your FT3 & FT4 were in fact very high & there would be no record.
Antibodies can occasionally interfere with testing and cause incorrect TSH results.
You would have to get historic records to be sure. I sought my records assuming I’d have lots of results to compare but I only found 1 test in 2014 showing undetectable TSH high T3. Wasn’t told. Nothing retested until I was diagnosed 4.5 years later. Nothing previous either & I’d assumed they tested my thyroid during my pregnancies - but doctors hadn’t.
High untreated levels could cause Afib.
Was your thyroid scanned? See the report, (again - I think you need your historic hospital records). Reports often includes details about the health of your thyroid which are not explained in full to you.
I have had a few ultrasounds and aspirations on my neck in 2019 and 2020 , then another one in March this year. Will see if there is anything on the letters. I have what they call “multi focal atrial tachycardia” this started last year, went in for esp and ablation, they could not proceed as it’s too close to my nerves. I am due to go in end of next month but this time at specialist heart hostpital . They denied it was anything to do with my thyroid, now since aprils results they have said it’s possible
Might be worth doing a bit a detective work & examine your history.
Look on the hospital website as most have a contact email for data or health records coordinator. It might be listed as health records department / library. If not on website would try the switchboard and ask it there’s a records department.
Hospitals usually have their own application form where you can request single, or entire record. I have done both. The single record was emailed back quite quickly. The full record being a larger record was posted. ID and a witness signature is required which I was able to submit via email. Photo copies via post can be used too.
Are you agreed with the plan to remove your thyroid? Is the surgery recommended due to growth and change of nodule shape? As they may now be suggesting it as you have “hyperthyroid” levels (without technically having hyper levels).
If they are removing thyroid as you have Graves hyperactive then Graves can go in remission.
The Graves forum isn’t very busy & I’ve no personal experience of thyroid surgery. I recommend you post on the main thyroid.
That way others can offer their experience and they may have other theories & suggestions regarding your case. There are some exceptionally knowledgeable members on main thyroid forum.
Some of the TSH are high in range. You have one T3 as - 13.3. But no FT4. So I think it’s a FT4. The TSH Is 3.1 which is quite high. most of your FT4 are LOW and your FT3 upper part or range.
I’ve a nodule same size it’s visible if looking for it but not obvious. It doesn’t affect, voice, swallowing or breathing. Surgery to remove thyroid for nodules is usually either because they over function or they are a physical compressing structures.
I wouldn’t agree to remove thyroid due to low TSH.
I think the endocrinologist decided it was best to take mine out because it has caused me to have the problem with my heart, I do also feel a tugging and can feel food when I swallow. I have a lot of symptoms too.
Sorry to post repeatedly. I’m just separating each of the elements otherwise I’ll confuse myself.
Omeprazole will lower stomach acid. Doctors always assume high stomach acid is cause of problems but low stomach acid causes same symptoms.
Sometimes due to low nutrients stomach acid is low. Although this is said to be more common with low thyroid levels and you have high thyroid levels.
You can do a test at home to check. Called “the burp test”
First thing in the morning, before eating or drinking anything (& taking medication)
1. Mix ¼ tsp baking soda in 4 to 6 ounces of cold water.
2. Drink the baking soda solution.
3. Time how long it takes for a burp to occur. Time it for up to 5 minutes:
4. If you have not burped within five minutes, it may be a sign of insufficient stomach acid. Early and repeated burping may be due to too much stomach acid (do not to confuse this with small burps from swallowing air when drinking the solution). Any burping after 3 minutes is an indication of low stomach acid levels.
I can't add much to this first post of yours but just to say that if you want to read up a bit more on Graves Disease I found the most all encompassing website is that of Elaine Moore.
Elaine has Graves and went through RAI thyroid ablation at around the end of the last century and finding no help nor understanding with her continued symptoms started research herself and is now a leading, well respected authority on all things Graves and with a world wide following with several published book, with one book dedicated to sufferers of Graves Ophthalmology.
There are 2 main Graves antibodies a TSI ( thyroid stimulating ) and a TR ab ( thyroid receptor blocking ) one of which will be positive and over range at any given time -
there is also a middle ground when these two opposing factions even themselves out and you can feel relatively ' normal ' for you.
Reading your thread you sound as though you have experienced symptoms of both these antibodies at ' play ' - your thyroid obviously under pressure because of the swelling and nodules.
The thyroid is a major gland, and referred to as the body's engine, and can cause a myriad of symptoms throughout your body :
Graves is an auto immune disease and something has triggered your body to attack itself.
There is likely a genetic predisposition, maybe a family member a generation away from you with a thyroid health issue and Graves tends to be driven by stress and anxiety.
Graves get's picked up when your immune system decides to attack your thyroid, and it is because the thyroid is such a major gland that the symptoms experienced can be said to be life threatening if not treated.
With the thyroid surgically removed, the life threatening aspect of Graves is removed and you become primary hypothyroid and once stable onT4 - Levothyroxine you will be managed and monitored in primary care by your doctor.
Reading around Graves has helped me have a better understanding of my own situation.
Apart from Elaine Moore's work there is one other book that has assisted me in getting better after RAI thyroid ablation in 2005 :
Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism. Barry Durrant-Peatfield wrote this book to help equip patients to help educate themselves to find the best options and he writes in an easy to understand manner, and though the title a little misleading, it's a totally useful book whether you have thyroid or not.
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