Hyperthyroidism with possible pancreatic pain

[eatingbiscuits]

I am hoping someone on here might be able to help. I have been diagnosed with hyperthryoidism in May and have been suffering terrible nausea and sudden stomach pain at the top of my chest behind the ribs radiating to the back on the left. I have been loosing a lot of muscle (I suspect Graves as loosing 2Ib a week) but the pain and inability to eat much isn't normal for hyperthroidism and I think it is in the area of the pancreas. I had been booked in for a CT but with the hyperthyroidism not yet treated, I keep being turned away as the contrast has idodene.

I am meant to be picking up the prescription for Carbimazole today (15mg) but having read more about it I am very concerned that my sudden pains are pancreatic and this drug might affect me badly. I have had full bloods done but they don't check for amalayse. I see online there is a urine test for it, but from what I can see the test strips I have at home don't have amalayse on there. Is there another thing I can look out for on a regular urine strip? Should I get a specialist amalayse strip from the chemist when I pick up the prescription?

I know the GP and a blood test is the best way to diagnose but even getting the test for Graves has been an uphill struggle and I have only got a blood test for that on 8th July so I can't really wait before taking the medication for hyperthyroidism as it has been untreated for some time now (I had a PE in Jan and think untreated hyperthyroid caused it).

Many thanks

[eatingbiscuits]

I feel I should mention as well that I have worsening CKD stage 2 - an erroneous blood test that was meant to check thyroid ended up with a serum creatinine result where I can see on 17th May I was 71 umol/L and 17th June it has gone up to 92 umol/L - possibly due to not treating the hyperthyroidism or resulting from the hypertension (for which I am on 10mg proprananol x3 daily which doesn't feel it is touching the sides but obviously harms kidney function also). I am worried about tipping into CKD 3 as eGFRcreat on 17th May was 90 units and 17th June 66 units

[elaar in reply to eatingbiscuits]

I have similar pain, but I'm hypo with Hashimotos. It often feels like I've been shot through my chest, with entry and exit pain.

To put your mind at rest, there's other tests you can have done before the CT. Usually an Ultra Sound is done first. There's normally a short waiting list for it and it's still one of the best methods for looking at certain gallbladder/liver/duodenum issues. It could be gallstones for example? (But it's fairly useless for looking at Pancreas problems due to their location)

You could also request a Faecal Elastase test from your GP, which will take just a few weeks for results. This is quite a reliable test for Enzyme function (other enzymes don't make it all the way through the digestive system to measure)

To give you some reassurance, the pancreas is quite a hardy organ, and when it comes to Thyroid issues the Gallbladder or Liver are more likely to be affected first. I had an Ultrasound, CT Scan and spent 1.5 hours in an MRI having my entire digestive system done, and they still didn't find anything :/

[eatingbiscuits in reply to elaar]

Thank you - I did have a private ultrasound after my embolism because the radiographer was concerned at me clotting and suspected it was linked to weight loss and something pre-existing. I know NHS doesn't do investigations for prevention so this seemed a good use but nothing was found (March).

I have emailed the surgery last week asking whether they could do other tests for the nausea - so many stomach bugs I feel they haven't tested for as well as coeliacs . I keep getting calls from different doctors though so every time it feels disjointed.

I have wondered if it might be the spleen as is similarly located. Bloods show low on lymphocytes but just in normal range and have been at the lowest end for 2 years which obviously makes me over think and worry about taking carbimazole. Liver is completely fine though, thankfully!

[pennyannie]

Hello again :

I think it sensible to start taking the AT drug as all it does is semi-block your daily new hormone production and should ease some of the symptoms being tolerated while we wait to know exactly what is going on.

Hopefully after a week or two many symptoms will have been alleviated and you will be better placed to deal with ongoing health issues.

[eatingbiscuits in reply to pennyannie]

Thank you for this - I actually took the first pill after lunch yesterday and have woken today with a much less sore/strained neck! They did ultrasound my thyroid and said it wasn't enlarged but it certainly felt hot and as if I was constantly straining my neck, which certainly feels much better today - quite remarkable! Hopefully other areas improve just as fast and I'll be able to eat again properly before I loose much more muscle as I actually have worried if walking would become difficult. At this point though I don't even know what a diagnosis of Graves would add as I would be on the same drug anyway!

[pennyannie in reply to eatingbiscuits]

If diagnosed Graves - which is an auto immune disease - here is no cure -

there is a treatment plan - which generally is around 15-18 months on the AT drug to simply ' buy you time ' while we wait for your immune system to calm back down again with hopefully your thyroid returning to normal function without the need for any drugs.

If with Graves you are looking at an AI disease that generally only gets diagnosed when the thyroid and or eyes are involved because these are 2 vital organs - and symptoms caused by an overactive thyroid can be life threatening if not medicated as the T3 and T4 can keep rising putting undue pressure on your heart.

Most people diagnosed Graves feel better once symptoms are alleviated by the AT drug - which should be regularly monitored - every 6-8 weeks - with the dose titrated down as the T3 and T4 fall back down into range.

When metabolism runs too fast as in hyperthyroid or too slow as in hypothyroidism the body struggles to extract key nutrients through food, no matter how well and clean you eat -

so its very important to maintain your core strength vitamins and minerals at optimal levels as if these nose dive through ranges as can happen this can compound your health issues further -

please see if you can get your ferritin, folate, B12 and vitamin D run - as if 'eating just biscuits' - you'll likely need to consider supplementing.

If the AT drug doesn't resolve symptoms when used to semi-block your thyroid hormone new daily thyroid production - it can also be used as a Block & Replace treatment whereby the AT drug is increased and fully block T3 and T4 thyroid hormones BUT a measured dose of T4 is also prescribed so your thyroid hormones do not fall too far through the ranges leaving you dealing with the equally disabling symptoms of hypothyroidism.

There is definitive treatment - which means loosing your thyroid to either RAI thyroid ablation or having surgery and a thyroidectomy - and then you will be totally reliant on thyroid hormone replacement for the rest of your life.

I think I've already sent you these links :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

You will still have Graves but without a thyroid the life threatening fear ( if it ever was ) is now eradicated as is your thyroid and living without a thyroid is no walk in the park with many forced to self medicate as the NHS has withdrawn prescribing recognised treatment options acknowledged and prescribed throughout the rest of the world.

Muscle waste is a known issue with Graves - elaine-moore.com for everything and much more - on Graves and AI disease.

Having had RAI thyroid ablation back in 2005 I totally regret this treatment - I was well on the AT drug but told it was too dangerous a drug to stay on long term - and RAI was the safer option - knowing what we know now - I do not understand why RAI is still offered as a treatment in what we understand to be a health care setting.

[eatingbiscuits in reply to pennyannie]

Thank you for that insight. I feel as though I have been fighting all the way so far - right from the pulmonary embolism - to find out why it happened. When I got the hyperthyroidism confirmed on bloods I was sure they'd jump into action to prevent me having another clot or medicate me at least. Having to chase for over a month to get the medication after speaking to so many doctors, having to arrange my own blood tests then having them take the wrong tests despite me checking when in the chair, having to explain my weight loss is so huge that I probably won't be able to wait a whole month for further bloods because my visceral fat is currently at 1% and I am already underweight and struggling to even pull the bins out...all while they don't seem to care I can't eat and am in pain on top has been so exhausting. I'm actually just pleased in the slight lift today as it feels like I've had to stay in bed for a month through exhaustion and pain. I can't understand why they are so slow when it's so quick to do damage. So sorry they encouraged you to have that treatment when it is irreversible, it doesn't really sound like they know what the best practice is, does it? I don't even know how long I have now until I see an actual endochrinologist, but the locum said 2 month waiting list about a month ago. Maybe if I respond well to the carbimazole they won't bother.

I'll come back and go through all of your links later too - thank you for explaining it in more detail. I had B12 deficiency and have finished my course of injections with 1 every 3 months to be booked in going forwards. I also paid privately for a vitamin D3 injection as calcium was low and kidney function getting worse.

I have actually just managed to eat a banana this morning, so it may be I'm off the biscuits - I'm not craving the sweetness now at least! I'm also taking magnesium with B1,B5,B6, inc and a Spatone sachet every day as well as mouth sprays for B12, Iron and D3.

[pennyannie in reply to eatingbiscuits]

It seems from reading on here that the NHS system is totally backed up -

I was ' sorted ' with Carbimazole within days of the antibody results 2004 - in total shock and just followed the medical advice offered and did what I was told -

at least now we have this forum and a safety net of people who have ' been there ' and care enough to come back and help others in a similar situation -

and thankfully we also have these research papers which lends credibility to mine and others health issues further ' down the track ' !!

[pennyannie in reply to eatingbiscuits]

Forgot to say - a sachet of Spatone will be of little value -

do you know you have low ferritin - if so - maybe try an iron bisglycinate tablet - as it's softer on the body and not as harsh and constipating than the iron tablets generally prescribed.