I was diagnosed with an Overactive Thyroid and Graves in August following blood tests. I have been referred on to an Endocrinologist who I am seeing later this month. I have attached a scan of the printed results I have received. Are there any particular points or questions I should be asking the Endocrinologist when I see them on looking at the results? I have been taking taking 20mg Carbizamole twice a day for the last seven weeks.
I have made a list to take with me to the appointment: Symptoms I was showing before diagnosis, tremors, cramp in my hands - couldn't hold cutlery some days, breathlessness, palpitations, drastic weightloss, muscle weakness and unsteadiness on feet, poor appetite, reddish patches on both ankles. The side effects I have been experiencing since taking the Carbizamole, headaches 1-2 times a week which I have been taking Paracetamol for, still slight tremors some days, insomnia and general tiredness during the day, small amount of grittiness feeling in my eyes, fingernails very weak and have broken off. Also how I am feeling now, better energy levels - able to go out and enjoy walks again, general better mobility not so 'weak' feeling, appetite still not brilliant - no inclination to cook for myself in the evening.
Does this seem alright? I want to show I am interested, want to contribute to discussions and am keen to get as well as possible.
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BeeOrchids
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TSH Receptor Antibody - Your very over-range level confirms Graves's Disease.
TSH being too low to measure is consistent with hyperthyroidism.
Free T4 and Free T3 being so high are consistent with hyperthyroidism.
Folate Optimal for this is a result in the upper half of the range. Yours is 56% of the way through the range so this is good. If you ever do need to supplement folate, this link is worth reading :
HbA1c Your result being in range shows that you aren't diabetic.
Vitamin D Optimal is variously quoted as 100 - 150 nmol/L or possibly 125 nmol/L. I'd be happy with a level like yours, but you could push it up a little higher if you felt you might benefit - look for lists of vitamin D deficiency symptoms and compare yourself. For future reference, if your level should drop you can calculate the levels of vitamin D you need to supplement with this link :
Vitamin B12 - Optimal is quoted in various ways by various sources.
a) Minimum of 500 ng/L
b) Upper half of range
c) Top of range
d) 1000 ng/L
Personally, I try to keep my own B12 at around top of range - 1000 ng/L.
If you decide to supplement, the best one for most people with thyroid disease is methylcobalamin which is already in a form the body can make direct use of. This is easily found on web sites selling supplements.
C-Reactive Protein (CRP) - This is a marker of your level of inflammation. Optimal is below 1, but yours is really close and doesn't suggest that you have much in the way of inflammation.
Liver Function Tests ; Bone Profile ; Gamma GT - I don't feel confident saying anything about these. But a good place for you to start doing any reading is on this website :
eGFR - This is a measure of kidney health, and for this result the higher it is the better. Your kidneys appear to be very healthy.
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The only thing I would be worried about with your results is the one I can't really comment on - the out-of-range bone profile results. I'm not a doctor so I can't say if the results being out of range is most likely associated with your hyperthyroidism, your treatment, or something completely different, for example your diet.
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Everyone with thyroid disease of any kind should at least try going gluten free for three months. But first you should ask your GP for coeliac disease blood testing. Get the testing done before changing anything to do with gluten. If the tests are negative then you are probably not coeliac, but you could be gluten intolerant. Unfortunately there is no test for gluten intolerance - it's just a case of you have to suck it and see.
I don't know if your doctor(s) will agree to test you for coeliac disease. If they won't you could go ahead anyway and give up gluten as an experiment and see if it helps. If you do it it has to be done ruthlessly 100% - you can't be "almost" gluten free.
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A great resource for people with hyperthyroidism is this website and forum :
Thank you so much, this is really helpful. Looking at a printout and not understanding it is very galling. I will save your reply as a document and print it out. I will ask about the out of range bone results and going gluten free as well.
It is really kind of you to take the time to write such a detailed response.
I can almost guarantee that your doctors will dismiss the issue of gluten if you don't have any obvious symptoms of having coeliac disease or a test comes back negative. It's really one of those things that patients have discovered for themselves is worth trying. And you don't need a doctor's permission to try it.
I had rigorous coeliac testing including blood tests, an endoscopy, and biopsies from my stomach. All the tests came back negative. But going gluten free gave me lots of benefits which I started noticing in less than a week.
You should read the profile of Fruitandnutcase who has Graves' Disease but is in remission, and she credits going gluten-free with being very helpful to her.
You didn't give a ferritin (iron stores) result. Breathlessness can be caused by many things, but low iron is one of the commonest causes, particularly in women. Make sure you get the result if you have a test.
Low magnesium is common in the population generally and it can cause lots of problems. Search the forum for info on magnesium and give a supplement a try.
You need roughly 250mg - 350mg elemental (i.e. pure) magnesium per day.
Note that magnesium testing is not reliable. Less than 1% of the body's magnesium is found in the blood, and the body prioritises it being in the blood. So if the magnesium in the blood runs low the body will steal it from other tissues. So a magnesium blood test might say that you have good levels but lots of other tissues could be deficient. People with functioning kidneys should excrete any excess magnesium in the urine - but that isn't a good reason to take too much.
Everybody's journey with Graves is unique to them, just list the symptoms you had, which have been resolved, and the symptoms you are still dealing with and the endocrinologist may adjust your level of the AT drug accordingly.
It would make sense to have a further blood test before you see the endo to know where your T3 and T4 levels currently sit as that will assist him/her in adjusting your dose of the AT drug.
Your vitamins and minerals have been read for you, but I can't seem to see a ferritin level - is it me, or is it on page 2 ?
Otherwise, at this point in time, can' t add much more than what I replied on your previous post.
6 weekly testing when on carbimazole is standard. Especially initially as need to carefully control levels. Carbimazole reduces production of new hormone not existing levels.
The TSH will stay low you need to re assess where FT4 & FT3 are. Ask to test again. Hopefully your levels will be in range and dose can be lowered to maintain the thyroid level not lower it further.
Reducing levels below range also has to be avoided, doctors are less worried about this as hypothyroid levels are considered safer than being hyperthyroid.
Is the gritty eyes a new symptom? Have you been told to be vigilant for eye issues.
Please report any eye issues to doctor straightaway & ask for ophthalmology referral. You may find having a sight test at a optician can be helpful, as they can recommend eye drops (opt for preservative free) and can right a letter for doctor to support a referral.
Thyroid eye disease TED is known to occur with Graves (and can occur without) the condition can preceding diagnosis, start during treatment & after treatment. The conditions develops separately and is treated by separate specialist. The association is that they stem from the same immune system attack on health tissues.
You could consider taking selenium, which Is recommended for those with TED. 200mcg of selenium supplements are recommended.Check the label for absorbable forms, selenium l-selenomethionine and yeast bound selenium are best, avoid selenite and selenate.
Thanks. Yes the gritty eyes are a new thing. I have asked for a repeat prescription for Carbizamole today and put a note for the GP about my eyes saying I am concerned.
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