I self referred to a endocrinologist in May this year. My TSH was not considered high enough to treat by my GP but the thyroid panel found high TPO antibodies. Long list of symptoms that go back many years plus family history of under active. The results stated positive for autoimmune thyroiditis so I thought it would then just be a formality to obtain a prescription. (Results are on previous posts).
Consultant refused trial of thyroxine, stating that if he prescribed, I could become worse and then I could sue him. He said that he was judged by his peers and would not go outside of guidelines. He added that no other consultant would prescribe thyroxine.
He thought my problems were menopause related, even though I stated that I did not suffer from night sweats or hot flushes. He linked my shortness of breath symptom to near the time that my periods stopped, so prescribed HRT. He told me that would help my moods. I didn't have a problem with moods or depression, only some concern of feeling like I'm constantly suffocating and being so lethargic that I had to give up work and not able to continue cycling.
He seemed more interested in looking up my mother's records after he checked my family history. This made me feel uneasy as my mum has never given me permission to have access to her medical records. He also argued when I raised about TSH levels in other countries being treated above 2.5 or 3. He told me that the machines are different in this country but would be comparable in other countries.
I now have been prescribed thyroxine by another consultant and my legs have come back to life. My shortness of breath is now being investigated by the chest clinic as it was found that the gas exchange reading was outside of normal range.
My concern is that he prescribed on the basis of my age but did not fully check my hormone level or considered fully my symptoms before prescribing. He made a big point of saying that my FSH was through the roof at 113.2 but according to the Internet, that is the expected result in someone who is menopausal. The HRT then made my breathing and lethargy worse, and I ended up seeing the out of hours at my local hospital, with my husband having to place me in a wheelchair.
It's not about suing and compensation (as he referred to) but I do want to raise my concerns to prevent someone else going through the same thing. I feel that he had fallen short of the GMC's Good Medical Practice of "make the patient your first concern". He is on the list of recommended endos with Thyroid UK, so I have emailed them about him.
I researched HRT and breathing problems and found studies that concluded that patients with breathing problems should not be prescribed oestrogen only HRT. Mine was the combined. It was a relief when my worsening symptoms caused by the HRT lessened in a few days but should he not be more aware of recent studies to keep his professional knowledge up-to-date, again as per GMC's good practice?
As far as I can tell, I could complain through GMC or CCG. Does anyone have experience of any of this? It's more that I want to raise a concern than complain. I appreciate that he prescribed according to what he considered would be best for me at that time but ignored my main symptoms and family history of under active thyroid. He didn't examine me properly, as didn't check my pulse or blood pressure and only briefly touched my neck, after making a joke that it would feel like I was being strangled. I don't know what can be detected by squeezing a patient's neck for 2 seconds.
Any advice would be greatly appreciated.
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Highland49
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I'm afraid I can't answer your question, but he shouldn't be squeezing your neck! I've had neck examinations, and there was no squeezing involved, just a gentle investigation of the thyroid - conclusion : it's very small. She invited me to feel for myself, but I couldn't feel anything. But, there was definitely no squeezing!
And, what he said about the 'machines' is absolute rubbish. Different labs in the UK have different machines, but as long as you have the range that goes with the machine, you just have to calculate the percentage to be able to compare. Besides, a TSH is always a TSH, no matter what the range. And, you are hypo when your TSH is consistantly 3 or over.
He also said my cold hands cold be Raynauds so he's not very clued up about thyroid for an endo. He also teaches at university so I thought he would be knowledgable.
The following is by an Adviser to Thyroiduk.org.uk who was also a scientist and researcher. His site is archived and some within a topic may not work but the following definitely does:
You can also open the other topics which will stun most Endocrinologists and doctors who know so very little about symptoms and due to low thyroid hormones but we will get 'extra' prescriptions for clinical symptoms as the professionals belief they do not come under the umbrella of hypothyroidism.
Thanks shaws, I've come across reference to that study about t3 helping the asthmatic children and have mentioned to my new consultant that I would like to be prescribed t3. He's not ruled it out but was just concerned about my GP continuing with the prescription and the initial cost as I have had to go private. I mentioned about sourcing from outside uk once I have the prescription but he wants to check my bloods first again including reverse t3 as I pointed out that my t3 was fairly low in the range.
He's also treating me for post viral fatigue with valaciclovir as I tested positive to 4 different viruses.
It is more than shocking - it is absolutely staggering and even the Lords were too. Blatant rip-off of the NHS by profiteers. I hope the investigations goes much further.
We were quite happy and pleased when we learned that there were going to be more than one option of T3 being available in the UK and so very hopeful.
We were staggered to find that the cost by all three were practically identical. Something is definitely not right.
And of course, a disease such as Hashimoto's has such a devastating affect on someone's life. To then have obstacles put in the way, such as the medical profession being reluctant due to costs to prescribe, really does not help people get their life back and get back to work. I don't know how out of date the guidelines from the Royal College of Physicians are that I found, it mentioned if a doctor wants to prescribe t3, they need to quote peer led research to back it up. So partly explains why this consultant was so hesitant to prescribe levo.
I wonder how much the new NICE guidelines will differ when it is finally finished next November.
Write complaint to NHS or CCG. I always advise people to do it.
I have total of three complaints with NHS....
Wait for it....
All dismissed and quashed.
You'll get the same outcome. But I still advice for you to write. The more people complain at some point it's going to attract the attention. Either press or auditors etc
Google health ombudsmen. See people reviews - eye opener.
The people you write complain to are non medics. Just standard admin type customer service agents. They take your complaint and then just write non relevant answer to dismiss your complaint. That's how it's done with the NHS.
You need to make clear (in writing) to NHS that the complaint you are making is to be accepted as your 'Official Complaint' then The Health Ombudsman will be able to take up your complaint and advise you. I have just done this and am awaiting a reply. The lady I spoke to and who is dealing with our case was most concerned that NHSE have not taken seriously the fact that I asked them to accept my complaint as Official. She said 'when it is in writing,I think it is Official'. I have hope, but could be wrong.
Nothing is taken by the ombudsman automatically no matter if you write "officially" or not. Moreover ombudsman is not there to "advise" but to decide.
The lady advising you have given you misleading information. Which I'm not really surprised. See above = admin type customer service.
If you don't write/make complaint to ombudsman directly, and this can only happen after you have your case dismissed by lower level decision maker, you won't have it dealt by the ombudsman.
My complaint after being dismissed by NHSE Complaints Team is now officially with the Ombudsman direct. My official Form has been completed and signed and is being dealt with. Now 4 weeks in and probably at least another 4 weeks to go, as waiting time was approximately 8 weeks I was told.
See, so you've had to complete complaint form directly to the ombudsman.
Your original complaint to NHS would not have been forwarded/passed on to the ombudsman as there is special, officials way to do it - after your original complaint was dismissed.
I think my original official complaint to NHSE Complaints Team was just ignored not dismissed. The lady I am dealing with was quite cross that NHSE Complaints Team said it was not an 'Official Complaint' even though this was what was written clearly.
Your shortness of breath could well be adrenal fatigue or insufficiency. Your best bet is to study all of what Izabella Wentz writes. thyroidpharmacist.com/
She herself has fully recovered from Hashimoto's and knows the most out of anybody on the complete subject. Others take certain aspects of the illness but she covers the whole lot. Please go right through her whole website, clicking on every link and box. She is so passionate about helping Hashi sufferers to recover that she emails out free of charge e-articles on all subjects. She is so much more clever than any endocrinologist.
Please do not get me started on the ignorance, arrogance and hypocrisy of endocrinologists and doctors! I have just written a three page letter of complaint, but no doubt as before I will only receive a standard reply sent by a clerk.
Thanks Marigold and sorry to hear you've been getting the run around by these so called professionals too. Luckily, I discovered Izabella's work recently. I like in particular how she explains the root cause, I always like to know the "why" of everything. Yes, her emails are very good too. I bought her Hashimoto's protocol recently and have taken the first step of going gluten free. I think that this has helped the breathing but with the hot weather, it feels nearly as bad again.
It must have been cathartic though to write your complaint, just a shame that we know it doesn't really get us anywhere but as trelemorele mentions above, at least it then gets into the public domain.
I think you should do what makes you feel best - if you’re going to feel more stressed about making the complaint, then maybe don’t do it. It depends how strongly and how strong you feel. It’s lovely of you to try to prevent someone else going through the same, but you’re probably not going to achieve that anyway. You’ve been through a lot, make yourself the priority. Best wishes x
Maybe there will be another way to spread the word and raise awareness. But scary all the same that these people are practising and caring more about their reputation than their patients x
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