Diagnosed February 2019 after blood test taken for virus. Had very high pulse rate so was given ECG which showed an AF. Bloods showed overactive thyroid. Referred to Hospital Endo in March. Had weight loss, small tremor and foggy head, palpertations.
I have had second Endo appointment two weeks ago. Very kind and interested.
He confirmed that I have no autoimmune disease from latest blood results. Definitely Hyperthyroid.The next thing to investigate are the nodules. I have an appointment for a nuclear medicine thyroid scan in 2 weeks.
I was on 20mg Carbimazole. This has been dropped to 10 mg. I’m weaning off propranolol and now on 5 mg. Next blood test 17th July. Next Endo appointment 25th September.
I started out with T4 of 23 in February (same ranges) now down to 8 (4 weeks ago).
Bloods as of 29th April 2019.
TSH receptor antibody level 0.4 0.00-0.90 u/L
Serum free T4 8.5 7.00-20.00 pmol/
Serum TSH Level 0.1 0.35-5.00mu/L
Serum free T3 4.2 3.80-6.70 pmol/L
Can you tell me what they are looking for now?
Do you think I am in danger of going too low in my T4?
Have put on 5 llb and feel a bit tearful.
Heart rate definitely lower.
Thank you for your help and support.
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Hugoo
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God love you. That sounds quite frightening. I’ve no experience to share with you but wanted to say I hope you get some answers and feel ok soon. Sorry to read you are feeling tearful. These changes are scary and they come on thick and fast. Best of luck xx
Hugoo, I don't know much specifically about Graves, but the one thing I do know is that you must have a positive antibody result to confirm Graves.
Looks like you've had a negative result there for TRAb, but this is after you've been on treatment for a while. The antibody should reduce when you go into remission, but I'm not sure if they would be expected to reduce while on Carbimazole, or later on. Have you been tested for it at any other time?
The reason you need antibody confirmation is that there are other possible causes of over range thyroid blood tests. For example Hashimotos, which is underactive thyroid, can cause short term spikes in hormone. 23 sounds to me like it's not a terribly high freeT4 result. Again, I am no expert in Graves but I have seen a few blood tests and often the results are more like double the top of the reference range, not just squeaking above it.
Did you have overactive thyroid type symptoms before you were diagnosed? This would be feeling speeded up, hot, restless, anxious losing weight, fast digestion, etc. The symptoms you're describing now of gaining weight and being tearful are typical of being low on hormone. Which makes sense because your numbers are now too low.
I'll explain what they mean in case it hasn't been explained to you. First you've got the TRAb antibody test, you're not out of range, so this test doesn't show Graves disease. But antibodies can go up and down quite quickly, so if you test another time they may show positive. You only need one positive result to be sure you have the illness.
TSH, or thyroid stimulating hormone is a signal made by your pituitary gland to tell the thyroid to make more hormone. When we're low on hormone it can get very high, and when we've got plenty or to much it will get low. Healthy people will have a TSH of about 0.8-2, so at the moment yours is lower than that.
Both the frees show how much hormone is in your blood. Most of the hormone made by our thyroids is T4, which is the storage form. Our body converts in into T3, which is the active form. FreeT3 is the number out of the 3 that most closely reflects symptoms. The ranges for both these tests are a normal curve. Most healthy people will be in the middle, and the closer to either extreme it gets, the more likely the person doesn't have a healthy thyroid, and the more likely they will have symptoms and feel unwell. Both your freeT3 and freeT4 are close to the bottom of the range, so I'd expect you to have the symptoms of underactive thyroid.
Thyroid hormone regulates our metabolism, the more we have the more energy we have, and when it gets too low every cell and organ in our body will slow down, when it gets too high everything will speed up. Symptoms reflect that, so symptoms of underactive thyroid are like the body slowing down, feeling cold, tired, finding things hard work, gaining weight, slow digestion (constipation), feeling depressed and emotionally vulnerable.
I'm not sure how low we expect thyroid hormone to fall while on carbi. It probably is expected that you'll get hypothyroid symptoms at some point in the process, but I don't know how much is expected You will end up feeling rotten for a while.
I would definitely double check to make sure you really do have Graves, because we really have to double check what doctors do. It's not them that have to put up with feeling terrible.
This blood test is the only one I have had to test antibodies. I have been told by Endo that I do not have autoimmune disease such as Graves. This is why he is looking at nodules next.
I did lose lots of weight, overthinking, fasts heart, night sweats, anxiety.
The Carbimazole has bought my T4 down to 8 from 23 and now I’m putting weight back on. I’m unsure why I was treated when only a little bit over the top range for Hyperthyroid. I did feel unwell though.
I am finding it all very overwhelming still
Should I contact Endo if I get hypothyroid symptoms before next blood test?
I don't know a bough about Graves to really say this, but if you don't have Graves then there should be an explanation found for why you have hyper blood results. As far as I know you shouldn't be taking carbimazole for anything other than Grave's.
Probably saying that you don't explicitly have a your doctor trying to avoid putting their neck on the line and giving you a proper diagnosis. But they shouldn't be giving you powerful treatments that can make you very sick of they're not going to formally diagnose your illness.
I think often we end up feeling out of control. Doctors get us on a conveyor belt and it just keeps going whether we like it or not.
This forum is a good place to read and find out more about what's going on. Use the search to look up hyperthyroid or hyper or Graves, or just slim through the current posts and let things wash over you. When I was too ill to really understand everything I used to read the forum until things slowly started to sink in.
Ya, why do they always do it like that?? Don't they know how anxious the patient must be to hear something, anything?
Based on your TraB results, Graves is ruled out, so now it's on to check what else could be causing you to be hyper.
Causes of hyperthyroidism-
The most common cause of hyperthyroidism is the autoimmune disorder Graves’ disease. In this disorder, the body makes an antibody (a protein produced by the body to protect against a virus or bacteria) called thyroid-stimulating immunoglobulin (TSI) that causes the thyroid gland to make too much thyroid hormone. Graves’ disease runs in families and is more commonly found in women.
Hyperthyroidism also may be caused by a toxic nodular or multinodular goiter, which are lumps or nodules in the thyroid gland that cause the thyroid to produce excessive amounts of thyroid hormones.
In addition, inflammation of the thyroid gland—called thyroiditis—resulting from a virus or a problem with the immune system may temporarily cause symptoms of hyperthyroidism.
Furthermore, some people who consume too much iodine (either from foods or supplements) or who take medications containing iodine (such as amiodarone) may cause the thyroid gland to overproduce thyroid hormones.
Finally, some women may develop hyperthyroidism during pregnancy or in the first year after giving birth.
It's good you're putting weight back on. It's good the heart rate has come down. These are important components for the healthy functioning of your body.
Testing for nodules and thyroiditis given u had a virus, these should be done to arrive at a diagnosis to facilitate treatment.
You mentioned getting tearful. If u start getting hypo symptoms including palpitations, before your next doc appt, do contact your endo earlier to get it sorted out.
Hugoo, pictures can only be attached the the originalpost . You could type up the results, and/or make a brand new post, which will allow more people to see them.
Think as for me they are checking modules I also have had. MRI.other procedures due throughout this month including scans believe they are checking to. be sure it's the nodules causing the problems before they carry out any procedures required .
Was just explaining how my Endocrinology is being thougher (? spelling) MRI, scans his checking to be sure it's nothing else before he operates . nodules so just behind the thyroid .He has diagnosed primary Hyperparathyroidism ,also had 24 hour urine test and bloods.Can notwait for results I feel so lousy back to see him end of August when all procedures carried out Hope you find your answers soon
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You will end up feeling rotten for a while. 
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