Grr: Hi all, just need a bit of a ran really. So... - Thyroid UK

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Grr

Suebu63 profile image
8 Replies

Hi all, just need a bit of a ran really.

So I had my first endo appointment 3 weeks ago,he's a lovely man, I looked him.

Got a letter last Friday with my test results etc, whisk was also sent to my gap. The very last lines of the letter stated that he was requesting my gp upped my dose of carbimazole to 20mg from the 10mg he had initially prescribed. I went down to the practice to request a new script for extra carbimazole, explaining why, I was told to ring back on the Monday to confirm this which I did, repeating that I needed more carbimazole, also I needed propranolol to take for a few more weeks while the carbimazole kicks in. I explained that I was going away for a short break, had enough medication to last until Friday, would get my lovely pharmacist to collect the script for me and pick it up from chemist on Friday. So I pick said script up on Friday, opened the packet at home to find 2 boxes of propranolol and NO carbimazole. Rang pharmacy to get them to confirm this was correct and yes, my GPs hasn't issued a script for carbimazole. I don think he's read the letter correctly. I expected a call from the surgery saying I need to collect a script for extra carbimazole, but haven't heard anything. I feel so let down, it's just as we'll it's the weekend and I have time to cool down as I'm so angry that they haven't read the letter correctly.

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Suebu63
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8 Replies
Jazzw profile image
Jazzw

It is really frustrating, isn't it? We had a similar battle to get T3 prescribed for my other half when the endo said she should have it. That took several days I seem to remember.

But I try to tell myself when these things happen that the GP might have had a horrendous day, and that maybe the patient he/she was dealing with before looking at my case was a particularly tragic case - I don't know, unexpectedly diagnosed with terminal cancer, or dealing with someone who's lost a child.

Some GPs really are rubbish but most of them are just swamped by the number of people they see in an average day. It must be a truly difficult job at times, trying to balance everyone's needs in the short time available.

Suebu63 profile image
Suebu63 in reply toJazzw

I'm more frustrated with the doctors receptionist as its her that has failed to request the carbimazole for me despite me asking twice.

I can understand the gp missing the fact that I need more as it is added onto the bottom of the letter as a ps so I kinda understand this.

I appreciate how difficult a job they have, and totally appreciate out wonderful NHS, just wish the receptionist would listen to me more.

Suebu63 profile image
Suebu63

Hi, i don't mind you asking at all. I have Graves' disease,

My symptoms are, palpitations, tremors, blurred vision, muscular pain, tiredness, hyperactivity, can't relax when I go to bed hence the tiredness. I can not tolerate the heat. I have other symptoms which I forget about until they occur if you see what I mean.

My bloods were:-TSH <0.02 mIU/L,free T4=37.8pmol/L, free T3=8.9pmol/L TRII=1.6U/L TPO antibodies >599.0 KU/L

To be honest with you this is the first results I've seen as I didn't ask for a test for hyperthyroid, my nurse just did a routine test when I was getting a blood pressure check, my symptoms I had just put down to my age, especially the aches and pains and not being able to tolerate the heat.

There is a family history of autoimmune disease in my family, 3 of us currently have graves and my son is T1 diabetic. My nana had hypothyroid as well.

ThyroidThora profile image
ThyroidThora

Hi,

I had a similar problem when my endo faxed a letter to my GP stating that I needed to start on T3. Rather than write me a prescription my GP rang me up at home said, "Do you really need this?" I explained that I need did it as it was part of my thyroid cancer treatment. She complained that it was expensive and I then argued that my endo had specifically requested she prescribe it because I did need it because Levothyroxine on it's own wasn't working.

Good luck for tomorrow.

TT xx

Suebu63 profile image
Suebu63 in reply toThyroidThora

Crikey ThyroidThora that's terrible.

I have calmed down now so will just ring the surgery tomorrow and request a doctors appointment for the same day, if I ring early I should get one, if not, well they will have to issue an emergency script.

I hope you are well.

ThyroidThora profile image
ThyroidThora

Hi,

No I'm not really well. The combined Levothyroxine and T3 didn't work and my specialist put me on Armour thyroid. I've been on this for over a year now and gradually he upped the dose. I've been much better on this and was a bit more like my old self. Then on the 22 June I saw him and he's taken the Armour off me because his small budget cannot bear the cost and he doesn't want to lose his license because, according to him, he's the only endo in the area prescribing Armour and he's been investigated. He knows my GP won't prescribe it because it's unlicensed and so he's told my GP to prescribe just T3 at an increased dose. I've been on this medication since the 23rd June and I feel ill. All the old hypothyroid symptoms are back and I'm collapsing by 2pm even after I've taken my afternoon does of 20mcg of T3. This is not good because I look after my 3 yr old grandson 3 days per week and I'm finding it hard to look after him because I'm so tired. It's so unfair because this is part of my cancer treatment to stop the thyroid cancer returning that was surgically removed in February 2013 and the cancer hospital have refused to prescribe it too!!

Sorry about the rant.

TT xx

Suebu63 profile image
Suebu63

Don't apologise for getting things off your chest, it's so unfair. I'm sorry this is all happening to you.

ThyroidThora profile image
ThyroidThora in reply toSuebu63

Hi Suebu63,

How's things?

I've had to get a private prescription because I was so ill on the T3 only therapy that my endo recommended. I saw him in August and he wanted to put me back on the combination therapy of T4 and T3 and I refused. I've bought some NDT from the US and I'm much better on this than the Armour I had previously.

I hope you are keeping well.

TT x

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