Hi im new here. I was diagnosed with hyperthyroidism in June 2018. Was put on block and replace. The doctors had no idea what was causing it but treated me as if i had graves disease when a blood showed i did'nt have the antibodies.
Anyway a year later they took me off these and said my thyroid was behaving its self now , even thou i still complained about a dull ache on the left side of my neck and still felt jittery. Both were dismissed as my 3 mth blood test after coming off the medication showed all was normal.
About jan of this year i noticed the palpitations were back, my pulse at resting was 112, but left it and did'nt go to the doctors. This covid-19 kicked in so i delayed going for a blood test. I finally went in June and my blood test showed my thyroid function test was ...... free T3 7.6 pmol/L, TSH less than 0.01 mIU/L, freeT4 20.3 pmol/L.
Been put on 10mg of carbimazole and i meant to take propranolol 40mg 3 times a day ( but i havent as idont like the idea of taking them as i naturally have very lower blood pressure)
I still suffer with the palpitations and they seem to happen in clusters, i can have 20 in an hour. The anxiety has gone and i dont feel like im dosed up on red bull any more lol.
Im due to have ultra scan of my thyroid today, and i have multiple letters for thyroid clinic at kings college hospital. They seem to be taking it more serious this time for some reason. I have no neck swelling just a dull ache every now and then.
My main concern is the NM injection and NM thyroid uptake scan they want me to have. Is this safe ? They are injection radiation into you, and my mind is running riot dreaming up negative thoughts on its a bad idea, im tempted to cancel it.
Sorry my 1st post is long. Plus thankyou for reading, and your input would be gratefully received.
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Denny1967
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Hashimoto’s (autoimmune hypothyroid disease) frequently starts with transient hyperthyroid results and symptoms .....and often misdiagnosed as Graves’ disease when Hashimoto’s is in early stages
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I already take vitamin D and folic acid, been taking folic acid supplements for years as a routine blood test showed i was folic acid anaemic due to me not eating alot of fruit and veg.
Doctors always treat hyperthyroid as Graves. Do you know which antibodies have been tested?
Graves is confirmed with positive antibodies for Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb). There is also Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) for Hashimoto's (auto immune thyroiditis in UK) which ultimately causes hypothyroidism but can begin with transient hyperthyroidism. You need to check which antibodies they have tested for.
They may be doing a scan to detect any nodules which can function autonomously and cause hyperthyroidism. These can be know as “toxic or hot”.
I have had both ultrasound scan and NM nuclear medicine scan or radioactive iodine uptake scan.
Depending on type of scan the hospital preforms you can either swallow radio active iodine or in my case I had small injection into my vein. It was no worse than a blood test. I have terrible veins so it took a few attempts in my case.
Then I had to wait 30 minutes. Some hospital test have a wait up to 3 hours, or return the subsequent day.
The scan I had was open but the overhead screen bit was pulled very close to my face.
I had stickers placed near my collar bone, this helps mark the area they are scanning.
What I remember most is how the table was too narrow for my arms so held them in front on me but they asked me to take them down so the scanner screen could come very close.
All straightforward with no issues. The radiation level in very low but you usually have to minimise close contact for 24 hours.
You should have appointment letter advising the procedure the hospital follows and you if you need to alter any medication you are taking. They will also check if your are not pregnant and you will have to take off any jewellery off.
I took a big bottle of water with me they advise you to drink plenty after the scan.
Just looked back on old letters from the hospital and all it states is ..... Antibodies are initially negative and a TSH receptor antibody is also negative.
If your thyroid level tests show that you are hyperthyroid, and your Graves' antibodies (TRAb) are negative, the scan is the next step to establish the cause...so this time they appear to be doing the right thing, so that you can get the right treatment.
In this quote ".... Antibodies are initially negative and a TSH receptor antibody is also negative. " the first set of antibodies referred to are probably TPO, found in most cases of Hashi's and more than 50% of Graves' - positive TPO indicates an autoimmune cause (Hashi's, Graves'), so the fact this was negative may suggest a 'hot' nodule or other non-autoimmune cause - see 'hyperthyroid conditions' links below for more info.
If the TRAb/TSI tests had been positive, you would definitely have Graves'. Following treatment with carbimazole, antibody levels may have been reduced, but if your hyperthyroidism were down to a Graves' relapse, antibody levels would [probably] be elevated again.
As others have said, the thyroid levels on their own don't mean a great deal without the associated ranges, which will vary from one lab to another. TSH is definitely suppressed, which you would expect as you've been told your thyroid levels are elevated (TSH is a signal from the pituitary telling the thyroid to produce more hormones - if you already have more hormones than you need, this signal won't be required so TSH will be low/suppressed), but it's impossible to tell the extent to which your thyroid levels are over range without knowing what reference ranges that particular lab uses,
The dose of radioactive material is much lower for the scan than for RAI treatment of Graves' or thyroid cancer. The pattern of uptake of radioactive iodine by the thyroid enables the specialist to make a diagnosis.
Re the propranolol: many hyper patients do find it takes the edge off their symptoms while they wait for the impact of the carbimazole to become apparent (which can take up to 8 weeks). When you are hyper, your resting heart rate can be very fast, which isn't a good thing. Hopefully whoever prescribed the propranolol will have been aware of your previous low blood pressure (was it measured again prior to prescription?)
It is essential that you find out exactly which antibodies are causing your ill health.
There are two main auto immune diseases that present as an overactive thyroid.
These are Hashimotos and Graves and in both cases they initially present as hyperthyroid.
Graves remains as constant hyperactivity, whereas Hashimoto's hyperactivity is transient.
However only Graves is treated with anti thyroid drugs like Carbimazole.
You need to know that the Graves antibodies have been tested and you should have the medical evidence of a positive TSI ( roughly reading as a stimulating ) result or TR ab ( roughly reading as a blocking ) result and confimation of the presence of the antibodies unique to this AI disease.
If these antibodies are not present you do not have Graves Disease.
Your might have Hashimotos Disease which starts with a hyperactive phase but then your thyroid drops back down naturally, into normal levels without any medical intervention.
With this disease the antibodies attack the thyroid over a period of years, and with each attack the thyroid becomes further damaged and less productive and you will start to experience symptoms of hypothyroid and ultimately be reliant on Levothyroxine to support the dying gland.
Your thyroid is the victim of all this and not the cause - the cause is your immune system attacking your body.
If you do have a diagnosis of Graves Disease you might like to start doing research and the most well rounded well researched website I have found is the Elaine Moore Graves Disease Foundation website which is stateside. There are sections than other than the conventional medical approach and much research into alternative, more holistic options including diet and life style that you might like to consider.
Please keep us posted and do remember to ask for copies of all your blood test results, and especially the antibody blood test result, which will confim if you have Graves Disease.
Hi thanks all for the replies, your input has been welcomed i see i have a fair bit of homework to do.
Just now had my thyroid scan which showed nothing to be concerned about, i was told thou that my thyroid was patchy !!! no idea what this means.
Another issue i have with this thyroid problem is and it stated before i was diagnosed with over active thyroid and thats smelly urine, that only goes when i am on carbimazole and levothyroxine, also yellow nails and ridges width way only on my thumb nails.
Was this the radioiodine scan or an ultrasound? They tend not to say much at the time until a specialist has reviewed the image. Patchy could possibly mean multi nodular. Here’s a link with the different patterns that the conditions show.
Thirst and more frequent urination is common with hyperthyroidism, sweating also more common so perhaps dehydration is an possibility? Nail issues are extremely common with thyroid problems, at times mine began lifting off the nail bed. Once your thyroid levels fall back into range and you ensure nutrients are optimal they will improve.
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By way of an update to my over active thyroid Posts. 
Over-active thyroid & Menopause 
