Graves - next stage: Hi all, I have posted a... - Thyroid UK

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Graves - next stage

Welshmumm
Welshmumm

Hi all, I have posted a couple of times but still a newbie when Graves is concerned. Seen my endo consultant in April, diagnosed as having Graves’ disease (antibodies present) told to increase my carbimazole to 40mg for 6 weeks and then back to 20mg. Also told to stop propanol gradually.

GP put me on iron tablets x 3 a day and in the meantime consultant wrote to GP surgery saying my iron very low?

Lots of tests done on full bloods, thyroid results and last visit to GP surgery said all back to normal.

I am far from normal whatever normal is these days. My head is all over the place and the lady Dr signed me off work and this has helped me spend time looking after me!

Sorry I am going on! Back to see the consultant in September and he talked about RDI or surgery? What is the general process in the NHS in the UK? I am far from being fixed and daily feel like I am being strangled by my thyroid so I know things aren’t completed “normal” even though my bloods differ.

Also B12 pernicious anaemia - injections every 8 weeks

Anaemic - on 3 x ferrous fumarate 210mg

Carbs - 20mg daily

Also back on propanol 10mg take 1/2 daily (helps enormously with my anxiety)

PS - seeing gastroenterologist in July due to testing for eosinophillic gastrointestinal disease

What should I expect to be the next stage if anything?

Thanks

7 Replies
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SlowDragon
SlowDragonAdministrator

Essential to test vitamin D and folate as well. Post results and ranges if you have them

When were low ferritin and B12 diagnosed?

Have you had TPO and TG thyroid antibodies tested as well as TSI or Trab antibodies for Graves

Hashimoto's and Graves affect the gut and lead to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

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Saw gastro consultant on Friday, blood test for celiac disease. Stool sample to be sent off but not sure what the test is for? Asked if there was a history of celiac’s disease or chron’s disease. Sending me for a colonoscopy and told me to not have lactose in my diet for 2 weeks. Also not ruling out IBS too.

SlowDragon
SlowDragonAdministrator
in reply to Welshmumm

Most of us are gluten intolerant not coeliac

No test available , just have to try it, but do not start until they have finished testing

B12 was diagnosed nearly 2 years ago Dec 16 and prior to Graves April 18. Ferritin was low I guess when Dr put me in the tablets, March 18.

I have no idea what antibody test they did but it was a specialist form I took to my local community hospital and results took about 10 days to come through, compared to normal thyroid function tests which are 3/5 days.

I have a feeling I may be coeliac and have tried cutting most of the things that trigger the symptoms and this has helped massively.

My Dr’s surgery have been previously fobbing me off, saying I am now under the care of the hospital. I was lucky the last time I had a lady Dr who was very sympathetic when I burst into tears for no reason.

Will post my results but never seen any, just go on what they tell me and when they show me the graphs on their computer.

Thanks

Supul
Supul
in reply to Welshmumm

And, isn't that the problem???!!

GP and hospitals just not working together in the interest of the patient!!! Patient left between appointments, feeling absolutely rubbish, not knowing which way to turn, to feel better..

Absolute disgrace!

My heart goes out to you, Welshmumm. I can't really help answer your questions regarding Graves. Though, I truly empathise with your experience and poor care service.

What I would say, please telephone your endo Secretary and ask for telephone consultation with endo. Explain your situation and ask for care plan.

I find that I must be my own coordinator of the Drs in the team. Unfortunately, unless we keep on, keeping on at them, we just don't appear to get what we need.

I phoned on a Friday, suffering, through poor communication between GP and endo. I told endo I was desperate and as he is my consultant, I need to know what I need to do. He booked me onto his Monday clinic. Since then, he monitors my thyroid care. I choose to stay away from GP as much as I can.

I'm wishing you great care.

Welshmumm
Welshmumm
in reply to Supul

Prior to my last visit to the Drs, I did not even manage to get past the triage system and in a round about way the Dr told me to contact the endo at the hospital. When I got spoke to the hospital they said the GP practice all seem to be passing the book and not to take it personal. Left a message for the endo as he was in holiday and I got a letter just repeating about my ferritin levels and my thyroid levels were much better. They never answered my question, what do I do when I feel like I am being strangled by my thyroid and in pain.

Feel really let down by the system. I know the carbimazole has worked but they can’t explain the fatigue still even though I am sleeping like a baby! Crying and feeling anger and not wanting to be around people. I have never felt so down in the dumps and never experienced anxiety or depression before but Graves is pushing all my buttons.

The way I feel right now and I know people are against it but they can take out my thyroid tomorrow if I got chance!

Thank you for replying

Supul
Supul
in reply to Welshmumm

How sad, that your not being cared for as well as could be.

I read Dr Peatfield book, How To Look After Your Thyroid, when I got that low. Yes, the GP triage system, and them passing the book, is hell for patients experience.

I know the book will help you. I pulled out all stops finance, (would have gone without food! It was so worth it!), and paid to see Dr Peatfield, because my previous GP ignored my requests for help with thyroid care. Like you, I had a strangling feeling in my throat.. I was so, so unwell, but I was told the yearly blood test was not due. Furthermore, I was refused endo refer, despite the fact I had never seen one in 25 years thyroid disease diagnosis!

Dr Peatfield visit was my turning point. He diagnosed thyroid crises plus adrenal fatigue. He treated me. I changed GP practice. Onwards, and upwards.

Please consider reading the book to begin with. Dr Peatfield teaches us to look after our thyroid and gives us the knowledge to do so.

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