First time post so please bear with me if I miss out anything vital. My story is that I consulted the GP about various symptoms (raised resting heart rate, heat intolerance, frequent bowel movements) in early August. Following a blood test at the beginning of September I was diagnosed with an overactive thyroid. I opted for a private referral and was seen by an endo 10 days later. He organised a blood test the same day and an ultrasound scan a few days later. He started me on 20mg carbimazole but 2 days later when the blood work came back he doubled the dose to 40mg carbimazole daily. I had my next blood test 3 weeks after seeing him and saw him a week after these blood tests by which time I had been on carbimazole for 4 weeks. We discussed the blood results and the scan. There were no nodules and the scan and bloodwork were consistent with a diagnosis of Graves disease. We discussed treatment options and I opted for block and replace. I was told to keep going with the carbimazole for another 2 weeks and then introduce 100mg levothyroxine daily. I am due a blood test on Monday by which time I will have been on Carbimazole for 9 weeks and levothyroxine for 3 weeks.
The initial course of Carbimazole took about 4 weeks to resolve the hyperthyroid symptoms and then I had a couple of good weeks. However since about when I started (or maybe a couple of days earlier) taking the levothyroxine I've had some horrible digestion issues. In the past I've had acid reflux but what I've got now isn't like my usual symptoms. I am getting occasional heartburn but the really horrible symptom is that I have long periods when I can't burp. It's almost like my body has forgotten how to and when I do it thinks Ah that's how you do it and I'm fine. These periods can last up to 12 hours at a time so acutely uncomfortable. My stomach also gurgles as if I've got a bucket of water sloshing around in it. I'm getting to the stage where I'm scared to eat or drink and I can't afford to lose any weight. I was borderline underweight by BMI when my symptoms started. Then I lost about 4llbs and although I've put half of that back I'm starting to lose it again. For context I'm 5ft and currently 6st 10llbs.
Can anyone help me understand whether this horrible digestive issue is likely to be part of the condition ie is it possible I went hypo before I started the levothyroxine and now it's taking time to pull me back into normal thyroid (and normal digestive) function. or could it be a side effect of either of the medications. The brand of Levothyroxine I'm taking is Accord. Also the blood test I'm having on Monday is TSH, T3 and T4. Are there any others I should be arranging?
The results of the blood tests to date are at the top of the post.
I'd be so grateful for any help in understanding the blood tests and what my expectations should be. In particular has anyone else had anything like this and how did they cope. I've reached out to the consultant but he only works one day a week and communications are slow to say the least!
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SAFSUK
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Ask your doctor to also test folate, ferritin & vitamins D (B12 has been tested). With your digestive issues push for gluten allergy screen (coeliac test) gluten can be issue associated with thyroid autoimmune. An allergy will be detected although an intolerance won’t be. So once tested, even if negative worth trialling a strictly gluten free diet.
Carbimazole will block all thyroid function. The replacement will restore hormone levels. Often we find doctors offer too low a replacement dose, most need more than 100mcg but you are extremely petite. An approximate guide is 1.6mcg Levo per 1 kg body weight.
38.1kg (6st 10lb) x 1.6 = 60.96 levo. so it’s possible 100mcg will eventually need to be reduced, or it might be right for you . This is an approximation, active individuals require higher dose.
Focus on FT4 & FT3 levels. Levo is T4 your body will convert some T4 to T3. The FT3 is the active hormone which your body uses.
TSH is a pituitary hormone which signals the thyroid to increase / decrease production. Doctors tend to focus on TSH but it isn’t reliable. The TSH might remain low after a period of hyper. Eg your thyroid levels drop but the TSH doesn’t reflect it. Doctors look at TSH and assumes because it’s low your still “hyper” but that might not be the case.
Could you post the timings of your block replace medication? What is taken & when. Do you take any other medication/ supplements?
TSH is highest early in morning before eating. Your FT4 will be highest after you take a replacement dose & lowest in the hours before it’s due.
So blood draw times are important as doctors often don’t account for comparison of timings & look at if levels are in range or not.
Recommend tests are arranged for between 8-9. Fast overnight. Delay replacement until, after draw. Biotin in supplements can interfere with test so should be stopped 3/7 prior to draw.
Thank you so much for your reply. Having googled how to take the levothyroxin I now take it with some water at 5am. I normally have a coffee and a couple of ginger nut biscuits at around 8am and breakfast at about 9.30. Breakfast is porridge with milk which is why I aim to have the Levothyroxin over 4 hours earlier. I take the full 40mg of carbimazole after breakfast. I was split dosing but had a little bit of heartburn initially with the evening dose. When I spoke to the consultant he said to take both doses together. That seemed fine on wks 4-6 before I started the levothyroxin but I'm wondering if I should go back to split dosing. Nothing to lose on the digestive front 😭.The only supplement I'm taking is dgl licorice which I've taken in the past for acid reflux. I asked the consultant about vitamin and mineral supplements but he didn't seem to think it was necessary.
My blood test is at 8.40am and I'm not going to take the levothyroxin until after the blood test.
Regarding dose I am quite active - I run 3-4 times a week but consultant didn't ask about my life style so not sure he took that into consideration when arriving at the 100g dose.
I'm now wondering if titration would have been a better option than block and replace because this has definitely been worse since I've started the levothyroxin.
Is the coeliac test a blood test? I've not had any food intolerances in the past. Can Graves trigger this?
Sounds like you take replacement correctly - away from food, medication & supplements & arrange blood draw & timing correctly.
You are on a high dose of carbimazole to block function and splitting dose is more useful when you want to lower the gap, if on low doses the thyroid start producing again. Do what suits best but consistency it key, take same time every day.
Sounds like your current issue began when starting levo. You could try another brand.
You might find that once your thyroid levels are optimal the reflux will improve. I’ve no experience of using dgl licorice.
Drs are not very knowledgeable about nutrition, they only look to treat severe deficiencies.
Running might be too strenuous while you are recovering, don’t push yourself too much.
Block & replace is good at controlling unstable levels quickly & keeping them stable without close continuous monitoring and adjustments by doctors. The drawback is that it requires a higher carbimazole dose and disguises what the levels are naturally doing. Should you naturally normalise you wouldn’t detect it.
I think for now stay with block & replace. Once your levels have been stable you can look at altering doses.
Coeliac test is a blood test - Tissue Transglutaminase - IgA antibody (tTG-IgA). I have heard doctors saying undiagnosed coeliac can cause Graves, & coeliac being diagnosed after diagnosis of Graves. Ive not read evidence of either condition can triggering the other. I think it’s just a common association of them occurring together.
Graves is a poorly understood and badly treated auto immune disease and only tends to get diagnosed when the immune system starts attacking the thyroid and / or eyes -
both are vital glands and organs that we would prefer to live with - rather than lose to a thyroidectomy or RAI thyroid ablation.
Graves is said to be life threatening if not medicated and the treatment is with an Anti Thyroid drug -
which just buys you time - by blocking your over production of thyroid hormones -
while we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
Quite why your immune system has decided to start attacking your body is of course the 64 million $ question which you are best placed to know the answer to, if there is one.
There is likely a genetic predisposition with there being a family member probably a generation away from you with a thyroid health issue and Graves can be triggered by a sudden shock to the system such as a car accident or unexpected death of a loved one or seem to be totally ' out of the blue ' -
It is poorly understood as no two peoples journey with Graves will be the same though we do know that stress and anxiety are common triggers to this AI disease.
There can be something of a brain / body mismatch with your brain in overdrive whilst your body is in reverse gear and totally exhausted though likely unable to turn off and sleep - rest up - your body has been in a heightened state and rarely do you bounce back from Graves.
The NHS generally allocate a treatment window with the AT drug of around 15-18 months during which time there are regular bloods tests and as your T3 and T4 reduce back down into range the AT drug adjusted down accordingly so your T3 and T4 do not fall too far through their ranges.
Some NHS endocrinologists offer Block & Replace treatment option and believe it is roughly the same time allocation whether semi blocking or fully blocking your thyroid hormone production but with this treatment option a dose of T4 - Levothyroxone is also prescribed so your T3 and T4 do not through the bottom of their ranges.
When metabolism runs too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key core strength vitamins and minerals from your food no matter how clean and fresh you eat -
and it is important that your core strength building blocks of ferritin, folate, B12 and vitamin D are maintained at optimal levels - which we can advise on - as these at non optimal levels can compound this phase of ill health further.
We do now have some research you may like to read :
Carbimazole was working for you and probably titrating down could have avoided your current symptoms. Too many variables so difficult to know. B and R is used for those who become hypo on a low dose of Carbimazole but with high AB's are not yet ready to stop meds. As it is early days you could return to 20mg Carbimazole and titrate according to results from 6 weekly blood tests. From my own experience of transferring over to BR I concluded that Docs. often use too high a dose. I insisted on the lowest effective dose ( for me 10 mg. Carb and 50 mcg Levo ) Safer when you might be on it longterm which is now considered to offer the best chance of remission.
My consultant has now suggested I stop the levothyroxine and reduce carbimazole to 20mg. Today was day 1 of new regime so I'm hoping that my issues will resolve very soon!
Hope things settle for you. It's very much trial and error and adjusting your dose to keep fT3 at your sweet spot (probably about half way through range.)
Thank you all for your help and advice. Lots to ponder. But most of all it's good to feel supported. I will update my profile but for reference I'm a 65 year old female who up until now has enjoyed excellent health other than occasional bouts of acid reflux. I am wondering if Graves was triggered by my first and so far only bout of COVID in March this year as first mild symptoms started about 3 to 4 weeks later and then I just went downhill.
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Desperate for advice
High TSH despite high FT4
First post & hoping for any advice please!
Need some help understanding this
New Member - Block and Replace
