I was diagnosed with Graves disease about 12 months ago but have never displayed any symptoms, in fact I was investigating why I can't lose weight regardless of 6 gym sessions a week and controlled diet when I found out.
Now I have been on Carbimazole for nearly a year I have put on more weight and I'm worried this is going to get worse regardless of how much exercise and dieting I do.
Any advice on this anyone?
LegoDog
Do you have any blood test results to share, including those when you were first diagnosed.
Have you had thyroid antibodies tested? To confirm Graves disease and know that you need Carbimazole you need TSI and/or TRAb antibodies testing. Without this test showing positive you may not be on the right medication.
Hashimoto's (autoimmune thyroid disease leading to hypothyroidism) is known to start with a "hyper" episode but it's not overactive thyroid. You would need TPO and Tg antibodies testing and if these are positive it's likely you have Hashi's.
The fact that you originally never had any symptoms of overactive thyroid, plus the fact that you are putting on weight is a bit suspect so if you have these test results please post them, with their reference ranges, so that members can comment. We have members with Graves disease who can help.
Thankyou SeasideSuzie,You have given me some things to ask for when I see the Endo in weeks time.
I'm testing for ft4,ft3,TSH,chem20,fbc,iron.
Have had nuclear scan and ultrasound, biopsy on nodule(Benign) and regular blood tests.
First test results were TSH-<0.02,free t4-21,free t3-6.8
I have no idea what these levels mean,just been trusting the experts up until now but this weight gain is troubling
LegoDog
First test results were TSH-<0.02,free t4-21,free t3-6.8
We always need the reference ranges to be able to interpret test results but going by the ranges we generally see here those results don't really suggest Graves Disease, the FT4 and FT3 aren't really that high over the common ranges.
I believe nodules are quite common with Hashi's although I think you can have nodules with either under or over active thyroid.
Please ask if any antibody tests were done and what the test was and result/range.
If not done then you really need all the antibody tests mentioned to confirm one way or the other.
Was your Graves confirmed with testing TSI or Trab antibodies. There are other causes of hyper, often It can occur temporarily, preceding a decline in levels. Carbimazole worsens / hastened the declining levels.
Doctors do not always check & just assume.
Graves usually causes very high levels with severe symptoms. Describing no symptoms and further weight gain makes me wonder if you are on incorrect medication and have become hypothyroid.
How much carbimazole do you take?
Do you have frequent blood test to check levels?
What is recent TSH, FT4 & FT3.
I was hyper from nodule and also gained weight but levels were elevated for a long time - so symptoms developed gradually.
Also important to test antibodies and key nutrients. What’s been tested previously?
I've had a range of tests done,nuclear scan,ultrasound and regular blood tests for ft4,ft3,TSH,chem20,fbc,iron.Also a biopsy on a nodule which was Benign.
I'm having a fresh blood test done tomorrow the seeing the Endo in a week's time.
Just want to be more prepared with questions this time,my Mum is obese and struggles with mobility in her early sixties and my rapid weight gain has me worried,but Dr and Specialist just dance around it,like they don't know what to do....
I'm on 5mg one day,10mg the next.Has been reduced to that since I started on 10mg per day
I’m on 5 / 10 mg alternating days since starting on 20mg over 3 years ago.
Your TSH is very low but your levels upon diagnosis are not very high (by most ranges)
My TSH has remain suppressed. TSH is unreliable.
Doctor appears to be focusing on TSH and likely causing FT4 & FT3 to be quite low in range.
Once you have current results post & we can advise further.
Get a hold of the report of the nuclear uptake scan. That’s quite accurate at confirming diagnosis as the source of hyperthyroidism is visible from the patterns which are quite distinct.
Nuclear scans are usually performed if there suspicion of toxic nodule or negative for autoimmune.
Doesn’t look like TSI or Trab were tested. TPO & TGab should also be tested.
Here's the Nueclar scan results,fine before medication
Ok your TSI antibodies results is on here but (there’s no range). But it looks high - actually quite high - by most ranges.
The report confirms patchy areas of high uptake similar to Graves but within expected limits. There may even be existing autoimmune damage for example or existing cysts or nodules. TPO & TGab should be tested.
There is a larger “cold” non or reduced functioning area which you said was later investigated & is benign.
So by the looks of it you do have Graves but the original thyroid may not be functioning well (and therefore levels are not excessively high) continuous above range levels still requires treatment & control.
Just ensure your carbimazole dosed is adjusted by FT4 & FT3 and not TSH alone.
HelloLegoDog and welcome to the forum :
Do you have there the blood test results and ranges at diagnosis, before you were put on the anti thyroid drug Carbimazole and does it show which antibodies were over range and positive alongside your TSH, T3 and T4 before you started medication ?
It seems a little strange that you had no symptoms and it's important to know which of the antibodies were positive and the medical proof and evidence to prescribe Carbimazole.
However with Graves Disease you can have TSI ( a thyroid stimulating ) or a TR ab ( a thyroid blocking ) positive antibody and there is also a middle ground where these stimulating and blocking antibodies offset each other, and cancel each other out with you feeling relatively 'normal ' :
First test results were TSH-<0.02,free t4-21,free t3-6.8This is all Greek to me,and I'm sure I have better results somewhere.Im getting tests done tomorrow so can update what's going on,Just need to understand all this a bit more before I see my Endocrinologist next week.Thanks for your help very much appreciated
Please do not worry - there are no ' better ' tests - this first one i what we have aske for and yes, your T3 level isn't over range - and why you probably had little, if any symptoms of an overactive thyroid.
I can't read the nuclear report even when I zoom and use a magnify mirror and see SDragon's findings below suggesting Graves.
Yes, it was all Greek to me too back in 2004 when I was diagnosed Graves - but you've a head start on me as I didn't start my learning curve until around 8 years ago when I became very unwell.
Graves is an auto immune disease and there is likely a genetic predisposition with someone in your extended family, maybe a generation away from you with a thyroid health issue.
Your thyroid is the victim of an attack by your immune system - quite why your immune system has decided to go on the attack is the 24million $ qestion.
How are your eyes, any dryness, stinging, light sensitivity ?
Graves can come on out of the blue, like after a car accident or the unexpected death of a loved one and tends to be stress and anxiety driven.
Th most well rounded of all the websites I found is that of Elaine Moore if you care to read around this poorly understood and badly treated auto immune disease.
There are two main autoimmune thyroid diseases
Hypothyroid - also called Hashimoto’s
Frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Testing - TPO and TG antibodies
Hyperthyroid- Graves’ disease
Testing - TSI or Trab antibodies
Your letter seems to suggest TSI is positive for Graves’ disease
Blood test tomorrow
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, with Graves or Hashimoto’s
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue with Graves or Hashimoto’s
Request coeliac blood test BEFORE considering trial on strictly gluten free diet
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
Tender Thyroid (Graves Disease)
How is Graves’ disease diagnosed
Travelling with Graves disease
Graves Disease & High Antibodies 
Graves' disease and tightness in neck
