I've been reading comments about the relevance of tsh results against t3/t4.I'm 20 years with Graves and for the 1st time having finally agreed to persevere with carbimazole (really nasty allergic reaction) my T4 and T4 are normal. However my TSH is still non registering so my consultant insists I stay on the drug.
I have gained 14llbs in weight in the last 2 months despite having drastically reduced my calorie intake.
I'm desperate to stop the drug as I now only eat 2 small meals a day but still can't stop the weight gain.
There seems to be no end game no indication how long it will take for my TSH to become 'normal ' if ever.
Has anyone else experienced this and have you any advice?
Written by
Chessika
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Be guided by your free levels as your TSH may take many months-years to recover if it ever does... sounds like you are now hypo, could you add the recent results and ranges. Your instinct to reduce your dose seems very sensible!
Do you also have any vit and min results as they could well be suffering too
Yes that's correctI do take good quality vit D and B12 daily and feel I have a pretty healthy diet.
Just becoming depressed by the weight gain I feel abnormal whenever I go out because i pretty much no longer eat what other people do for fear of getting even fatter
Have you checked your levels they need to be optimal and when supplementing ought to check twice a year... I'd be inclined to investigate iron as this is linked to weight gain, tiredness....
Oh interesting that's something I've not been aware of.The thyroid problems are common but seem to be a minefield for everyone.
There's alot of one size fits all goes on where we are all individual.
I am due another set of bloods which wld be 6 weeks after those results but Xmas has kinda interfered. Hoping they will show some difference.
Sorry I'm being annoying asking another question but since taking the carbimazole I get regular hot flashes. I'm post menopause and didn't get them then. I'm bit confused by that?
Hormones all affect each other so it might have knocked you out of balance, worth getting your sex hormones checked to see where you are, Randox do a finger prick test for £29 assuming you might be open to adding HRT? But! I'd also be a bit suspicious about your B12 level as this can cause hot flashes too...
Yes, a vitamin B12 deficiency can cause hot flashes:
Explanation
A lack of vitamin B12 can prevent the body from producing enough red blood cells, which carry oxygen to organs and tissues that regulate body temperature. This can lead to hot flashes.
Can you please share with forum members your original blood test at diagnosis and the antibody readings probably looking like a TPO - TgAB - TRab - TSI -
or worded as a TSH Thyroid Receptor ab - alongside a number and cut off / range :
Graves is an Auto Immune Disease and something has triggered your immune system to turn and attack your thyroid and or eyes rather than defend them -
how are your eyes - dry, gritty, watering, light sensitive - please ensure any ointment you use is Preservative Free - even those prescribed by the NHS.
These Graves antibodies circulating in your blood tend to sit on / get stuck onto the TSH receptors - weighing down these fine, hair like follicles - which in turn then causes the TSH reading to go low and causes your thyroid to over produce thyroid hormones causing high over range T3 and T4 readings and an over active thyroid.
Graves is considered life threatening if not medicated as the thyroid hormones T3 and T4 can keep rising higher and higher and cause heart problems and a beta blocker can be prescribed to ease the pressure building internally.
The treatment is with an Anti Thyroid drug - either Carbimazole or Propylthiouracil ( PTU ) and all this does is semi-block you own new daily thyroid hormone production and as your T3 and T4 fall back down into range the dose of the AT drug is reduced down as otherwise your T3 and T4 will fall too far through the ranges and cause the equally disabling, if not worse symptom of hypothyroidism.
All the AT drug does - is buy you time - while we wait for your immune system to calm down again and your thyroid, hopefully return to normal function without the need for any drugs.
Much like a plane circling above waiting for a landing slot - losing height and fuel before it comes into land - so too are you - with your metabolism being controlled by the AT drug.
Quite why your immune system is so upset is of course the question and you are best placed to try and understand this piece of the puzzle - all we do know is that Graves tends to be a stress and anxiety driven AI disease ?
The NHS generally allocate a treatment window of around 15-18 months with an AT drug during which time you should have regular blood tests every 6-8 weeks and as your thyroid hormones fall back into range and AT drug reduced to find the lowest possible dose to keep your T3 an T4 at around mid point - say around 45/50% through the ranges - so you are neither too high and said to be ' hyper ' nor too low and dealing with hypothyroidism - and leaving you as symptom free as possible.
There is an alternative to Carbimazole - so if these side effects do not abate - ask to be switched to PTU - as mentioned above.
At present your immune system is pretty much under the control of the Graves antibodies and why the TSH is low, suppressed - but given enough time the TSH may start to move again, as the antibodies circulating in your blood reduce and this phase of Graves Disease comes to an end, with your immune system calmed down and your thyroid will reset itself without the need for any drugs.
When metabolism is running too fast or too slow the body struggles to extract key nutrients through food and it is essential that you eat well and maintain a strong core strength of ferritin, folate, B12 and vitamin D - to support you through this phase of ill health -
as if not maintained at good strong levels - which we can advise on - you are compromising your health, further than necessary - so please get these blood tests run and post the results and ranges on here as just being in a range somewhere, anywhere, is not optimal - which is where we need to be.
I detail below the most recent research you might like to read and save as you go through this treatment regime -
Thank you so much lots of helpful information I think I need to accept that I shall be taking carbimazole for quite alot longer if I don't want to relapse!
In July this year, 6 months on carbimazole, my readings were T3 12.8 T4 36 TSH 0.01.
So I have had good improvement.
I am also prediabetic and have been for a decade my GP never seems concerned. I'm not classed as overweight. I have a pretty good diet and giving up sugar seems to have little effect.
Does my thyroid issues have any influence or am I just unlucky!
Since you wrote you had an allergic reaction to Carbimazole - maybe consider switching to PTU as the research suggests staying on the AT drug longer is , for the patient, likely the best option - though of course there will always be some people who will need definitive treatment and should have the option of a thyroidectomy.
There is likely a genetic predisposition with maybe someone a generation away from you with a thyroid health issue - and Graves tends to get diagnosed at puberty, pregnancy and menopause and can be caused by a sudden shock to the system like a car accident or unexpected death of a loved one - or may seem to come on - simply out of the blue -
With Graves at any one time you can have Blocking or Stimulating antibodies controlling your thyroid and a bit like being on a roller coaster of symptoms without any of the fun - and there can be periods when these 2 extremes of symptoms can burn each other out leaving you feeling relatively ' normal for you ' -
it is just a waiting game - and you need to maintain your core strength vitamins and minerals to help carry you through this first phase of Graves.
Some people seem to ' collect ' AI diseases - best get checked out for celiac and pernicious anemia - as these two are known co-horts of Graves Disease.
All things ' thyroid ' and much more can be found on the Thyroid UK website - which is the charity that supports this patient to patient forum - thyroiduk.org
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