In 2012 I was diagnosed with graves disease. Carbimazole wasnt helping and I was given RAI and now have UAT. For 8 years they have struggled to get my dosage right, I've been as low as 25mcg of thyroxine and I am currently on 275mcg thyroxine. This changes constantly. My most recent bloods show my tsh as 99 and my t4 as 13. Before this (6 weeks ago) my tsh was >150 and t4 was 3. However, back in december my bloods were all in the normal range.
Symptoms wise, no matter what levels are but considerably worse at present are:
Tiredness
Breathlessness
Racing heart (at rest and exercise)
Muscle cramps especially in hands, feet and back.
Very tight muscles throughout whole body, no amount of deep tissue massage is helping this.
Irritability
Unable to sleep.
Anxious
Nervous
Sudden urge to empty bowels within an hour of eating, worse when eating meat and veg together. Currently being referred through to gastro for investigations.
Low iron stores often, 3 infusions in last 3 years.
Low B12
High ALT levels that soon return to normal range (I rarely drink alcohol, max 2 units a week on average)
Pins and needles in hands and feet, mainly left hand side and usually only end two finger and toes.
Weight gain, despite exercising regularly. I walk 15k steps a day and do gym class 3/4 times a week.
Dry skin
I'm after some advice on what people recommend I can try next, whether that be different medication to try, what to push for from GP etc etc.
Thank you in advance.
Written by
ifonly2014
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It was about 8 years after my RAI for Graves that I became very unwell.
I was discharged from hospital with no answers after about 2 years of outpatient appointments for various issues and my doctor referring to me as a conundrum.
All I was diagnosed with was a low ferritin level.
Housebound I purchased 2 books and started reading for myself.
Elaine Moore - Graves Disease - A Practical Guide :
Barry Durrant - Peatfield - Your Thyroid and How To keep It Healthy:
In 2015/6 I treated myself to this little laptop and found this amazing website :
In 2017 I found the courage to question my doctor's treatment and managed a dose increase in Levothyroxine and a referral to an endocrinologist as I wished to try T3 with my T4.
I failed at this hurdle as my TSH was by that time suppressed at 0.01:
I have learnt that RAI can cause many consequences within the body :
It trashes vitamins and minerals : it can induce symptoms similar to fibromyalgia : it is taken up by other glands and organs : it can cause symptoms similar to Sjogren's Syndrome: and the list goes on :
Many people attempting to live a life without a thyroid, do better on a T3/T4 combination:
Some people regain their health by not taking Levothyroxine at all but Natural Desiccated Thyroid.
I failed to achieve anything inside the NHS system and I now self medicate and buy my own full spectrum thyroid hormone replacement and have my life back, as good as it's going to be at age 73 and have become my own dyslexic doctor.
It's a massive learning curve and obviously you start by reading up yourself and going through the appropriate NHS channels as you maybe more lucky than me, and obviously we would all prefer help and advice within the recognised NHS authority if possible.
T3 and NDT can be prescribed within the current NHS system, T3 by getting a referral to an endocrinologist and NDT on a named person only prescription from your doctor.
Your journey has and is a trial for you, and do hope you have been referred to a specialist endocrinologist to try to solve your roller coaster of a ride.
Do you have any current blood tests you can share with the forum members ?
Many people find Levothyroxine brands are not interchangeable.
Do you always get same brand of levothyroxine?
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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