Apologies if this goes on too long but just wondering if anyone has experienced the same & how they manage it.
Got diagnosed with Graves' disease in April this year. I'd experienced what I believe are some of the usual symptoms; raging hunger , anxiety, tired but couldn't sleep, palpitations & aching thyroid to name but a few. No weight loss to speak of, maybe a couple of pounds here or there. I was started on 20mg/day of carbimazole with the hope of it eventually going into remission. From the off I didn't feel right on it.
Roughly 6 weeks later got bloods done with follow-up 2-weeks after. At that point results seemed to show me being pushed towards hypothyroidism. Sorry I don't have any of my tests to post here. Also noticed I'd put a kg on in weight despite no change in diet, but started feeling sluggish, cold, etc.
Carbimazole was dropped to 5mg/day and the by this point had started feeling really "off-colour". Again bloods were repeated 8-weeks later with follow-up 2-weeks after.
By this appointment I'd put another kilo on & didn’t my body know it!! Any extra weight affects my joints due to old sports injuries & they were really beginning to feel it.
I'd also started sleeping a lot & began to feel quite poorly. The results at this appointment seemed to suggest everything was "OK" & my endocrinologist said it seemed like my thyroid couldn't decide what it was doing & I was fluctuating between hyper & hypo.
It was late August by now & I was told to stop the carbimazole altogether as because I was fluctuating, she couldn't actually prescribe anything. She advised me to take some time off work to rest and we'd have to see if my thyroid settled down or finally go one way or the other by the time I saw her again.
So with medication stopped, I took 4 weeks off and pretty much slept for the 1st two weeks.
I started taking magnesium supplements at this point as I felt so exhausted and then noticed a tiny bit of the weight dropping off.
I have to say I do feel a little brighter since being on the supplements but still have good days and not so good days. I can literally be feeling OK one day & the next generally unwell.
However, my weight is getting me down.
As of now, despite getting typical hyperthyroidism symptoms of anxiety, feeling "wired" but not sleeping, palpitations, watching what I eat despite a raging appetite, and somehow managing to do some exercise, my weight is creeping up. The joints are feeling it!
My next bloods are later this month with follow-up early December.
I just feel like I don't know whether I'm coming or going and wondered if anyone else has experienced the same and how they managed their weight? Did they follow a particular diet?
Sorry for the long winded tale, but I just feel a bit lost at the moment. Thanks
Written by
SnowQueenOne
To view profiles and participate in discussions please or .
First question is was Graves’ disease actually confirmed by testing TSI or Trab antibodies
Hashimoto’s (autoimmune HYPOTHYROID) frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Carbimazole is not correct treatment for Hashimoto’s
We see quite a few early stage Hashimoto’s patients misdiagnosed as Graves’ disease, if tested initially while in transient hyperthyroid phase
So first thing is get hold of your blood test results
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after any change in Carbimazole
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for autoimmune thyroid (Hashimoto’s)
Very important to test vitamin D, folate, ferritin and B12 for all thyroid disease
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or with Graves’ disease
Low vitamin levels common as we get older too
What’s your approx age
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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.
You can have mildly raised TPO or TG antibodies with Graves’ disease. It’s also possible, but rare, to have Hashimoto’s and Graves’ disease at same time
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
You must get a hold of your results so you can see what has been tested and what has been missed off.
Its ideal to arrange online access, ask if your practice offer it. If not obtain copies via reception. Don’t ask Dr they don’t like it & don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist just say they are for your records. You are legally entitled to them.
When your hyper it’s usual for most to lose weight, but it’s said about 10% of hyper people gain weight.
When taking carbimazole it’s expected the weight lost is re-gained but we are advised to watch what we eat as we have become accustomed to larger appetite.
My own thoughts is very high levels (eg 3 or 4x the normal level) drives metabolism to dangerous levels very quickly causing weight loss. Elevated levels drives the appetite & causes & low energy levels & that can cause weight gain.
I have elevated levels many years and was obese at diagnosis. I did lose when levels lowered whilst on carbimazole.
I also started on 20mg, it’s a fairly low starting dose,(60mg is the highest dose) in 2 months I was approaching hypo & the dose was halved. As your experience is similar I suspect your levels were not excessively high in the beginning. To be able reduce to 5mg and then stop all together so soon would suggest your hyper may not be due to Graves.
Unfortunately doctors often go by the TSH (thyroid stimulating hormone). The TSH is a pituitary hormone which signals the thyroid to produce hormone. If it senses the thyroid levels are high the TSH reduces. The TSH rises when levels are low but it take time to respond and is not as reliable when levels fluctuate. You need the FT4 & FT3 tested.
The anti thyroid medication will have blocked your T3 and T4 thyroid hormone production and now without these drugs your own thyroid hormone production should reset itself, but I don' t think it's a simple as just turning on and off a tap.
If there are raised antibodies, and either a diagnosis of Graves or Hashimoto's auto immune disease this means that something has happened and triggered your immune system to attack your body, and more importantly attack your thyroid which is a major gland.
Your thyroid is the body's engine and responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
In theory the AT drugs block your own thyroid hormone levels rising any further, and it takes a great deal of skill to get the dose " just right " - so you are with neither " hyper " or " hypo " symptoms.
Hypothyroidism and hyperthyroidism are to extreme opposite ends of the same stick - that being where your T3 is in the range - too low a level for you and you have symptoms of hypothyroidism just as too high a level for you and you have symptoms of hyperthyroidism.
There is a full list of all symptoms listed on the Thyroid UK website and sadly it does get confusing as some can be experienced in both the hypo and hyper " camps " .
Obviously we don't know for sure exactly what has occurred to upset your system and cause these symptoms of erratic thyroid hormone production and the picture will be more clear once we see some blood test results and ranges.
You might like to dip into Thyroid UK who are the charity who support this forum as there is much to read on all things " thyroid " :
If you do have Graves Disease the Elaine Moore Graves Disease Foundation website is an excellent adjunct. Elaine has Graves and went through RAI thyroid ablation and finding no help with her continued symptoms and ill health started researching this poorly understood and badly treated auto immune disease herself.
Elaine has now become a well respected authority on all things Graves and AI thyroid and has extensive research on the auto immune component of Graves, for which mainstream medical have no answers. There is also a section on more holistic and alternative treatment options as again, we are looking at an AI disease, though mainstream medical tend to think thyroid surgery or ablation an option but this can simply compound one's health issues.
I have Graves and am post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease caused by the RAI, and hypothyroidism and self medicate with full spectrum thyroid hormone replacement.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Graves Disease- Am I ever going to feel better?
Graves disease 
need your help with anxiety and Graves disease
