I was subclinical but experiencing symptoms really over the past year atleast. I had the following results about 6 months ago:
Free T4 = 18.6
TSH = .23
Free T3 = 6.4
My latest results had apparently worsened so the disease is getting worse:
Free T4 = 21.6
TSH = .33
Free T3 = 6.3
I was reffered to see an endocrinologist by my GP who suggested I have a nuclear thyroid scan. The scan came back as consistent with graves disease.
The endocrinologist put me on Carbimozole and Propanalol, both a very low dose 5mg Carbimozole and 10mg Propanalol. I have been taking this for about 2 weeks now.
The propanalol has helped with my heart rate but my main problem now is fatigue, I am feeling so tired and flat all the time. Is this normal when starting out on these drugs?
Any advice for someone recently diagnosed? The endocronologist says that we caught it early so is hopeful for remission of the disease.
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adzman
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Can you add the ranges to those results, please? Because they don't look out of range - especially not the TSH. Were these tests done before you started carbi?
The doctor did say it was mild which is why I think he didn't want to diagnose graves until after the nuclear thyroid scan and why the dose of carbi is low (i think).
Well, it doesn't look like any Graves' results I've seen before. With Graves' the TSH is usually unreadable, and the Frees about 10 x over-range. Your FT3 isn't even over-range. Have you had any antibodies tested? And, if it's that mild, I'm surprised it showed up on the scan. But what do I know! lol I have Hashi's.
When are you due to have your next bloods done? You don't want to leave it too long or you could go very hypo.
Adzman those results are more typical of underactive thyroid also known as hashis , hashimotos or autoimmune thyroiditis.With Graves TSH is very low but ft 4 is usually well over 40 and higher and ft3 is well into the 20s and higher
Hashis often starts with a spell which mimics Graves. This is because the autoimmune system attacks the thyroid damaging it. As a result of the damage an abnormal level of thyroid hormones are leaked into the system. Once the attack is over and things settle you go back to being hypothyroid .
The way to tell if you have hashis or Graves (the treatment for these is different so important to know) is by testing antibodies. Antibodies clear up the mess left after the thyroid has been damaged. Trab or TSI antibodies would confirm Graves disease and hyperthyroidism. Tpo antibodies would suggest hashis or hypothyroidism.
It was only diagnosed as graves after my nuclear thyroid scan.
The comment on the scan was:
"Diffuse prominent activity in the thyroid. While the calculated thyroid uptake is in the normal range, the appearance remains consistent with Graves' disease. The presence of activity in the pyramidal lobe also suggests this diagnosis. "
I did get a TSI and TSH Receptor antibody test back in March this year, the result was:
TSI < 0.10 (< 0.55) and the TRab 1.9 (<1.8)
So my TRab is high but not my TSI. I have not had another one of these tests though recently. Does this presence of activity in the pyramidial lobe confirm graves as suggest in my scan result do you think?
My endo suggested that it was the start of graves and if i didn't treat it, the levels would continue to worsen?
I am two weeks into carbizamole treatment and have my next bloods for T3, T4 and TSH in 15 days.
Because your ft4 and ft3 are not overly high you will need to keep a close watch on yourself as the carbimazole could quickly bring those levels down and you could start to have symptoms caused by hormone levels being too low. TSH is slow to respond so best to look at ft4 and ft3 rather than going by TSH .For me the symptoms of ft4 and ft3 being too high and being too low were the same so I had to rely on blood levels to tell me.
I was on carbimazole for 5 years with 3 trials coming off to see if I would go into remission but I never did.
A nuclear scan measures the function of the thyroid. So if the scan shows increased function throughout thyroid it’s suggests Graves.
Usually it’s accurate as the % can be calculated, I would get a copy of the report, if the % uptake is above normal target or range doctors will conclude Graves.
With autoimmune thyroiditis in early stages the function may be normal / low function. The transient hyper is from damaged thyroid. Usually uptake scans are used if antibodies negative and the cause of hyper needs to be determined.
Often if hot nodules are suspected.
have you had antibody testing!
TRab tests stimulating, neural & blocking antibodies. So if blocking antibodies are high the severity of hyper is lessened & can also result in hypothyroid.
High TSI antibodies - is stimulating only and if high causes higher hyper.
Have either been tested or TPO & TG are associated with hypothyroid autoimmune thyroid it’s can also be present with Graves. Some can have both.
Carbimazole brings down how much hormone can be made. (Not existing levels - they need to be used up ) So you may have be careful to keep in range.
Even taking 5mg every other day if it pushes levels to hypo.
It’s early days, the affect of being slightly hyper & having levels altered with carbimazole will all be contributing to your symptoms.
Have you had folate, ferritin, vitamin D & B12 tested, These can all be affected when Thyroid abnormal.
Many with Graves have issues with gluten. Test first to rule out allergy. If negative still worth trialling a strictly gluten free.
So my TRab was high not sure what this is now if it is higher or not...
I have had issues with vitamin D being low, and trying to take supplements for this also magnesium and zinc. My B12 level is in normal range.
I haven't had a hypo test but maybe I should ask for this since both my aunt and grandmother had hashi's so I am told.
I must of lucked out being male and being one of 1:10 males who have thyroid issues
I had allergy test too but did not detect issue with gluten, so maybe i will try avoid this to see if it makes an impact. Has been a long road to get here to figure out what has been going on especially since symptoms were not severe but I have felt like it was not normal.
Ok - so your TSI (stimulating) is negative. (Normal is 0 - 0.55) .
Your TRab was positive being above the expected limit.
As this was 6 months ago it may be very different now but this would indicate Graves with a low level of stimulation & that’s reflected in elevated thyroid levels.
With gluten - it’s all or nothing. Any trace will have a affect.
Hashimoto’s is diagnosed with positive TPO & TG antibodies. These are often raised in Graves too so can’t be ruled in (or out) you have both conditions. The family history makes it especially possible & watching for under range FT4 & FT3 is as important as monitoring for rises.
Your being tested quite often so this will help. But - if possible - try to avoid making many adjustment to dose. It takes time to levels to settle. The carbimazole effects production, levels take time to balance.
Have you had thyroid tested before being diagnosed? (Most of us don’t have a history to compare to).
Its possible you had low or fluctuating levels prior to diagnosis which could explain troublesome symptoms. I find fluctuating levels causes symptoms but being stable even if low or high less noticeable.
TSH won’t be reliable - always focus on FT4 & FT3 and check doctors aren’t looking solely at TSH.
Do you have test results & range for vitamin D? to know how much to supplement? 2 important co factors for vitamin D. Magnesium. I take 375mg citrate powder in drink at nighttime. Some find glycinate a good form. Propranolol can lower magnesium (longer term) so I recommend you start supplementing.
Just having a look over my results, I cant seem to find a recent vitamin D test. My last vitamin D test was back in 04/05/2021 where I was told it was borderline deficient but seems like it was never retested. This was not long after it all started with my heart rate, I had an accident where I needed surgery. Was routine operation to stitch a laceration to my leg. After I awoke from the anesthetic I had a tachychardia episode where my heart rate was 140-160 bpm. I had to stay in post-operative care all night and none of them could figure out why my heart rate would not come down. Afterward one of the nurse told me to go speak to my GP cause it was not normal and hence the testing of various things started.
So anyway my vitamin D was tested at 63 nmol /L, was told I should be aiming for 75-150 nmol/L.
Magnesium on the 02/03/22 was 0.88 nmol/L, normal range (0.70 -1.10). I have been taking magnesium citrate since the GP at the time said my heart rate was because lack of vitamin D and magnesium etc.
My B12, folate actual results was on the 03/03/2022:
Vitamin B12 - 303 pmol/L ( > 180)
Active B12 - 104 (> 30) pmol/L
Folate - 21.9 nmol/L (> 10)
Have not taken any vitamin K2 MK7 but will look for this in the pharmacy. Also sounds like maybe I need updated results for all these right?
Is diet very deficient in Calcium? Was calcium prescribed? Excess calcium tends to built in vessels. Rarely need more than dietary calcium, as in lots of sources.
D3 12.5 mcg = equivalent to 500iu. It’s likely not enough to improve low levels.
Arrange some current results & we can advise further from there.
Do all the results only just have lower limits? There should be a normal range. Most nutrients are optimal once at least midway of range.
GP mentioned I should have calcium too to help with absorption. I might look to switch to higher vitimin D dose then with no calcium.
Your GP is confused.
Vitamin D helps the body to absorb calcium from the diet. You want that calcium to go into bones and teeth, and vitamin K2 and magnesium help that to happen.
If you have high levels of calcium it could end up lining your arteries, which is obviously not a good thing.
As long as you are not deficient in calcium (get it tested) I would say you shouldn't take it. See these links :
Another comment about calcium... People are often told to take calcium (calcium carbonate) if they are diagnosed with osteoporosis or osteopenia. Bones contain calcium, but they aren't made of chalk. Excess calcium can actually make bones more brittle and weak.
Your Graves antibody test shows slightly raised TRab - so currently blocking antibodies are controlling your own thyroid hormone production and currently your TSI - the stimulating Graves antibody is under range and for want of a better description ' laying in wait '.
As you can see these 2 antibodies express the 2 extremes of symptoms that can be suffered when dealing with Graves Disease which is a poorly understood and badly treated auto immune disease as no two people seem to experience Graves in the same way.
There is generally a genetic predisposition to Graves, maybe a generation away from you with someone likely with a thyroid health issue and something has likely happened to trigger your immune system to go on the attack, and here you are.
Graves can happen after a sudden shock to the system, like a car accident or an unexpected death of a loved one or come about simply ' out of the blue ' but finding your unique trigger will help you more forward more aware of circumstances and life stress situations which commonly seem to be associated with this AI disease.
Graves can wax and wane throughout one's life, but once triggered medical mainstream see Graves as life threatening as when the stimulating antibodies take charge the T3 and T4 levels can keep rising to very high dangerous levels and an Anti Thyroid must be prescribed to block one's own thyroid hormone levels" taking off " and going rising higher and higher.
When your metabolism isn't sitting quite right for you it becomes increasing difficult for the body to extract core strength vitamins and minerals through food, no matter how well and clean you eat, so suggest you also keep an eye on maintaining good levels of ferritin, folate, B12 and vitamin D to support your body through this first phase of the disease.
You may feel totally exhausted as though you have run several marathons back to back, whilst sitting on the sofa - and thinking you need to go again, running hard - you maybe eating for Australia and loosing weight, and there can be a total mismatch between your brain and body, with neither one being able to turn off - so just be kind to yourself and cut yourself some slack.
I found the Elaine Moore Graves Disease Foundation website the most well rounded of all my research though it was around 10 years too late for me as I was diagnosed Graves in 2003 and had RAI thyroid ablation the following year and only stated my research when very unwell in around 2015.
I particularly found Elaine's sections on holistic and complimentary, alternative treatment options extremely interesting and relevant, even without a thyroid, as after all we are looking at a AI disease for which is for life and for which there is no cure.
The thyroid is the victim in all this not the cause as the cause is one of your immune system response - find your personal ' triggers ' and you are half way to solving your puzzle.
Elaine has Graves and finding no help with her continued ill health after ' treatment ' started her own research into Graves around the turn of the century and now has several published books and her own forum with a worldwide following and the leading researcher in all things Graves and auto immune thyroid. elaine-moore.com
Interesting the most recent research paper is suggesting the longer the patient stays on the AI drug the better the outcome for the patient - pubmed.ncbi.nlm.nih.gov/338...
The other research paper I have relates to what still appears to be the most encouraged treatment option so please put this under your pillow for later - ncbi.nlm.nih.gov/pubmed/306...
There are several forum members who are on long tern AT medication and when ' life stress ' dictates simply resort to a small dose of an AT medication to help them out.
I think it all comes down to the degree of inconvenience being tolerated by the patient and undoubtedly there will be some people who will need invasive treatment and then a thyroidectomy has to be the cleanest and safest option for the patient.
Thanks so much for the reply, very helpful and will read through the helpful links you posted also, has been a lot to take in to understand about the thyroid and graves.
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