Graves Disease and terrible care

[Portabella]

This is probably a pointless post but I’m feeling down and frustrated.

I relapsed with Graves in November 2023. Urgent referral to same consultant. Blood test and appointment in December 2023. On Carbimazole 20mg (consultant recommended 40mg but GP refused to prescribe that dose).

Since then despite requests via the Endo department I have had no blood tests. GP surgery won’t do them because I’m under the care of a consultant. Next appointment is in October- a June and September appointment were cancelled. I have had to stop taking Carbimazole blind because I began to feel awful and suspected I was hypo. So block but no replace. After a month I started again as my Graves symptoms returned.

I can’t afford private testing- I am self employed and my income has plummeted. I feel abandoned and honestly have forgotten what it feels like to be well. I know my consultant is pushing me towards RAI so he can wash his hands of me.

Sorry this is such a pointless negative vent. Why is thyroid disease care so terrible? If I was diabetic I would have regular testing. It feels so unfair. My appointment in October is only a phone so it feels like a total waste of time. If you have Graves, what has your experience been?

[Fruitandnutcase]

That’s just not good enough is it. I can’t believe your hospital can keep cancelling your appointments or that your GP won’t do what your consultant has recommended. My blood tests were always carried out by my GP surgery a week before I was due to go and see my consultant although I never had T3 tested or any vitamins and minerals . What you are experiencing is just absolutely ridiculous.

I had Graves back in 2012. I started on 20 mcg carbimazole and after 4 weeks I had a blood test and got a letter from my consultant who I hadn’t met - telling me to go to my GP and get more carb and double my dose. My appointment with the endo was three months from when I was first diagnosed and it was my GP who prescribed the 20 mcg carb. to start me off.

I then spent two months on 40mcg carb with no blood tests at all and by the time I saw my consultant I was very hypo. I was told to ‘have a few days’ without carb - I stopped it for a week - and at the same time I started on levo which was gradually increased throughout the year I was being treated.

When my bloods were where they wanted them to be I stopped everything at once and that was it. My treatment took exactly the year I was told it would take. I’m still in remission.

I’m not sure how to advise you. Does your consultant know what your GP is up to? You could speak to PALS at the hospital - you could try explaining what is going on to your consultants secretary to see if you could get your appointment brought forward - or you could speak to your MP and try to get them to intervene. Don’t let yourself be pushed into RAI if it’s not what you want because once your thyroid is no more you will be dependent on your GP to look after you and so far your GP doesn’t seem to care.

Could you go to another (better) hospital?

Hopefully someone else will come along with better suggestions but your treatment really is appalling.

[Qwerty12345]

That sounds like really bad care from your GP. I had graves in 2014/15 and have been in remission since 1 year of treatment. From memory I had to wait around 6 weeks for my consultant appointment. I was on a beta blocker from GP to control symptoms until then. Once on treatment from consultant I had regular blood tests at the gp surgery and the results were reviewed at the hospital and treatment adjusted on the basis of the results. I had hospital appointments every 6 months I think. I was seen by a consultant 3 times in total and discharged when I stopped treatment which was around a year. I have annual blood tests now at gp surgery to check all stays well.

[Portabella in reply to Qwerty12345]

Thank you both for sharing.

The NICE guidelines say blood tests every 6-8 weeks and my last blood test was nearly 10 months ago. In my December appt the consultant said he wanted me to be on Carbimazole for at least a year but I had to stop because I just couldn’t function properly. I’ve reduced my dose to 10mg and am painfully aware I am increasing my risks of relapsing again. I had Graves for the first time in 2019 and the care was better even during covid although I only ever had two NHS blood tests but paid privately for three others.

I used to be fit and well and ran a business. Now I’m scraping along the bottom barely making ends meet.

[pennyannie in reply to Portabella]

Hey there again :

Well you know that your level of care ' this time around ' hasn't been there - and I don't understand why - and changing doctors / consultants just another layer of stress that no one needs, even when well.

Looking back at my own situation - once on the AT drug, Carbimazole, I was able to function and work and would have preferred to stay long term on the AT drug - if given the option back in 2005 -

If you haven't found much relief of symptoms on the AT drug the following link probably doesn't relate or worth considering - - pubmed.ncbi.nlm.nih.gov/338... -

The only other option is to then think of having definitive treatment - either RAI thyroid ablation or a thyroidectomy - and now we have some research regarding QOL after RAI - ncbi.nlm.nih.gov/pubmed/306... :

It is a pretty dire state of affairs - it reads as though your thyroid hormones fell too far through the ranges and caused the equally disabling symptoms of hypothyroidism.

Balancing thyroid hormones is a bit like being on a seesaw - whether hyper or hypo -

either stuck up too high with no power to do anything and just ' stuck in hyper ' waiting to be bought down - or 'stuck down and hypo ' - in the mud - again with little leverage to power and lift yourself up-

Ideally your T3 and T4 needed to be kept in the ranges at around mid point so to allow you to function while we wait for your immune system to calm back down again - and this does mean regular blood tests and adjustments to the AT drug as you T3 and T4 fall back down into range.

Being self employed is another layer of stress that you lived with but which now must be causing you more upset -

I'm afraid Graves doesn't have a time line and can be debilitating - and is still poorly understood and badly treated.

Did you dip into Elaine Moore - books and website ?

I found the sections on holistic and alternative treatment options and life style choices of interest- though too late for me as I only started my research around 10 years post RAI when much more unwell and found no support nor help through the NHS .

elaine-moore.com

[Digger0]

My bloods were always arranged by my GP at the request of the consultant. Is your consultant out of your area? I would contact the practice manager in writing and ask why your prescriptions and blood tests are not being done.

[Portabella in reply to Digger0]

My GP practice has a policy of not doing blood tests if you have been referred to a hospital consultant. So my initial blood tests were done at the GP but once the referral happens, you are expected to have them at the hospital. However, the hospital has also changed and you need paperwork and labels etc from the consultant and make an appointment for a blood test. I tried to arrange this by contacting the Endo dept but heard nothing back. At that time I assumed I would have an appointment in March and then obviously the June appointment which got cancelled.

The repeat prescriptions get done by the GP no problem but they created a fuss when I noticed (my fault for not carefully checking) that the first consultant letter said 40 mg but the prescription was 20 mg. I could have just taken double the dose but if you're paying for prescriptions it soon adds up.

[Emaych61 in reply to Portabella]

Do you not qualify for an exemption certificate? But even if you don’t it might be worth looking at prepayment certificates. That should help with prescription charges.

[Yoga54]

so sorry you feel down and frustrated and hoping you get some positive answers from everyone on here. I have Graves’ disease although I’m in recovery at the moment and no longer taking block and replace after being on medication for 2 years. I would push for blood tests from the hospital and tell them how awful you’re feeling right now it’s an awful disease and my heart goes out for you.

[JeepGirl3]

I understand your frustration and fear. I was lucky enough to get blood tests, but I’m allergic to the medication. My Endo has been clueless and far from helpful. All she’s wanted to do from the start is kill my thyroid.

I’ve worked in health care since the 90’s (lab and physio) and Ive always found it deplorable how doctors have no concept of empathy.

Hugs to you. Is it possible to get a second opinion from another Endo?