After being poisoned by carbon monoxide I was diagnosed with hypothyroidism and prescribed thyroxine. 5yrs later my life as I knew it is gone, I am extremely tired and recently after a scan of my thyroid was told I have a nodule on one side and lesions on the other. Therefore I was referred to the specialist who hasn't met nor spoken to me. He has sent a letter to my gp accusing me of not taking the meds correctly. I am utterly offended and shocked I have always taken meds same time ever day. So I am left with the nodule and the lesions and a feeling like someone is gripping my wind pipe, swallowing feels abnormal. I feel like I can't continue with this much longer.
Happening in Fife
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Feelingfailed
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He has sent a letter to my gp accusing me of not taking the meds correctly. I am utterly offended and shocked I have always taken meds same time ever day.
I would discuss this with your GP. Ask him to contact the endo to assure him that you are a compliant patient and always take your prescribed thyroid hormone replacement correctly, and reiterating your symptoms, so will he agree to see you. If you have a good relationship with your GP then hopefully he will support you.
I did exactly that and my gp has written back to the actual professor whom referred me to the specialist. My gp has made it clear that he has no reason to believe that I'm not taking meds correctly etc. I just feel like everywhere I turn its taking forever letters back and forth and I'm at home finding every single day a genuine struggle, I would not do anything foolish but I didn't want to go on this morning I sat in the car park for about an hour after my appointment trying to pull myself together. Thanks so much for your reply.
Exactly but I'm told by the gp that the problem is he has to apply to the NHS on my behalf for this to happen and he said that there's no point as the NHS normally refuse!. I have a nodule and lesions and no one really cares enough to find out what and why this has happened. The nodule can be cancer and this is the crap I'm having to try and cope with. 🙄
i felt so sad when i read your post. Hang on in there and take some of the excellent advice given by the other members on here. i am acting on the advice given to me and i just feel better knowing i am not alone in my suffering and that i am not going mad or imagining my symptoms. take care and keep strong
Thanks for your reply, I have lost faith in Scotlands public services. Its one thing being poisoned by carbon monoxide due to the negligence of the local council and another thing when our nhs doesn't actually appear to care. 🌼
We have the right to ask for one, but not to necessarily have our request acceded to:
"You can ask your GP, consultant or hospital unit for a second or further opinion (an opinion about your health condition from a different doctor).
Although you don't have a legal right to a second opinion, a healthcare professional will consider your circumstances and whether a second opinion is needed".
Well that's what I thought but apparently that's not the case, I feel like if I lived in England I would not be in this position. After a fair amount of research I have definitely found that the protocol in England is different. I specifically asked for a second opinion and as I said my gp basically said he would have to ask the health board and he went on to say it would be a waste of time as they usually refuse!.
I thought time would be of the essence due to nodule and lesions. I am genuinely shocked and I don't know what else I can do. 🌼
Sorry, I didn't compute the "happening in Fife" reference.
According to the CAB, appeal to the Health Board is not the first port of call, although the actual protocol isn't likely to be of much help, given what's happened:
"You may wish to get a second opinion after seeing a consultant, either as an out-patient or an in-patient. You will need to request this from the consultant, who may arrange for you to see someone else. If the consultant does not agree, you could ask your GP to help."
Unfortunately, the CAB doesn't make clear exactly what help your GP can offer in the circumstance. Have you spoken to PASS? cas.org.uk/pass
Have you considered making a complaint on the basis that you have been discriminated against - the Consultant has made an unfounded judgment about you in the absence of facts/evidence, or even having met you, and prevented you from accessing secondary specialist care on the basis of his own prejudice?
After speaking with the people you recommended I have begun the complaint procedure. So sad that I have to go down this route when I just want to feel better. Thanks again. 🌼
Brillaint, it's good news that you feel you have got an avenue available to you, even if it shouldn't be necessary. Whilst I was a non-Exec Director on a Health Authority Board, one of my roles was to Chair patients' formal complaints against their GPs, so I understand how emotions about it can be conflicted.
Well I have a copy of the letter in my bag and I just can't even bring myself to look at it, I'm in shock. I have just checked however and his name is Dr John Chalmers. 🌼
I have also read that the professor had looked at the scan and suspected thyroiditis, Dr J Chalmers has replied to that saying he "suspects that's an over interpretation" of my scan. And "probably a result from longstanding hypothyroidism". I am so annoyed when dealing with health issues and feeling so ill "suspect" and "probably" don't cut it. Am I being unfair?. 🌼
It seems that typically, he's the clinical lead for diabetes, not thyroid care; but nevertheless from what you report, he considers his thyroid knowledge to be far far superior to everyone else's - so you have to wonder why he doesn't do everyone, including you, a favour, and actually grant you audience to see him. Then he can explain his own, superior thoughts on your scan results ....... And you can ask why, if your scan provides this evidence of longstanding hypothyroidism, he believes the resultant symptoms are down to your non-compliance and not your condition ....
You are brilliant being able to help, and have the ability to make me really laugh out loud. In fact I can actually see myself repeating most of your advice. I wouldn't have been able to express myself so efficiently, saves all the meaningless jargon (emotions) getting in the way.
A short story for you: I went to see an Endo in Yorkshire (quite a journey as I'm in the Midlands) because he was recommended. The first thing he said to me was "I don't prescribe T3 and you shouldn't believe what you read on the Internet". To which I replied "Yes, clearly, because I had read that you were a great Endocrinologist".
Well I haven't watched the whole thing but I will, our A+E really is similar to American hospitals now, but our system is not the same as America. However I have heard a fair amount of people who would pay more in to the NHS for better treatment. I just feel that all I have left is to try and speak out and it be on record somewhere. 🌼
It is only when we test the system that we find there are huge holes in the net.
A friend was suffering, and was told she could not see a specialist (gynae) so we arranged something...
She lay down in M&S and I shouted "call an ambulance!". She was rushed to hospital and saw the same specialist within the hour. She was kept in and had an op. The fact I had her overnight bag with me was not spotted! A bit drastic but she was at the end of her tether.
I hope you find a way to see someone who can help soon.
Well from what I have gathered and the fact that the sheer amount of people who I knew and are now gone. Due to diagnosis coming to late!. Seems we have to fight at every turn. I don't want to exist I want to live. Thanks for the insights, every single one is making me feel more determined than ever and two days ago I couldn't see a way forward. ❤️🌼
do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Put up a new post with your thyroid and vitamin results and members can advise on next step
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
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