An actual apology from a GP!!!!!! Thyroid patient fights back.

[Hypopotamus]

Earlier this year I started a new batch of Thyroid-S, and started to feel worse, feeling like I wanted to sleep all the time. Somebody on here said that the new batches of S were stronger, and that may be the issue. I tried reducing it, and adding in some 'old' TR that I had left in the fridge. I was felt better, but had only a small quantity of the TR left.

When I was originally diagnosed with hypo in 2000, I was put on thyroxine, but my TSH kept going up as they increased the dose. I landed up on T3 (Liothyronine), and later Armour. So, my experience of thyroxine led me to believe that it was no good for me, but as there seemed to be no option this year, I requested some thyroxine from my GP to try replacing half of my 2 grain dose of Thyroid-S.

I requested the prescription on-line, and kept going in to my local Boots to collect it, only for them to say that it hadn't arrived. As it is such a drawn out process to even contact our local GP practice, I left it, and carried on with the TR. Then, one month after putting in the request for a prescription, my phone rang, and when I picked up, a voice said "Hello, this is Sally, what can I do for you?" I replied that she would need to give me some clue as to her profession before I could give an answer. She said that she was calling from the surgery, and when I asked what about, she said that I had requested some thyroxine. I replied that I had, but had not received it. She asked why I wanted it, and then told me that she didn't like patients just asking for medication whenever they felt like it. I asked if I was hypothyroid, and she said that I was, so I asked her why I couldn't have thyroxine. She said that as I hadn't had any for a while she didn't agree that I needed it then. She asked me why I thought that I should be the one to decide what medication that I took so I reminded her of the posters all over the surgery stating "Your health is our concern but your responsibility". I said that I was happy to take that responsibility. Having no answer to that she simply said "Well you are not getting thyroxine from us, you can ask your endo for it", and ended the call.

I had also contacted my endo, and had a blood test, and a telephone consultation followed a week after the call from the GP. The endo agreed that I should try some thyroxine, and said that he would write to my GP. After I received a copy of that letter, I ordered some thyroxine as I had done before, and picked it up a week later. And to my (happy) surprise, the combination of Thyroid-S and thyroxine seems to work OK. The sleepiness was gone, and I seem to get through my days without feeling too sluggish.

So when the first batch of thyroxine was running low, I ordered another batch. When I went to collect it, it wasn't there, so I decided to wait a few more days as the surgery are now taking up to two weeks to process prescription requests.

In between all this I had received a letter from the GP Practice asking me to contact them about making an appointment for a blood test as they wanted to update their records. What blood test, and what records? I wondered, but I phoned them anyway. I was told that it was a standard blood test so they could update their records, so I said OK, and was given an appointment for that afternoon.

When I attended that appointment, I asked the lady taking the blood what it was all about as the practice had shown no interest in me for 30 years or more. Apparently they should have been doing annual tests on me to check for several potential problems, but they hadn't been, and now they were trying to put things right (as they had been labelled one of the worst GP practices in England!). So my blood was taken, and I though that that was that.

A week later I got a call from the surgery, and the young lady calling said that she had been told by a doctor to tell me to stop taking my thyroid meds as I was over-medicated. I had predicted that happening as I has already taken my full meds the day of the test, not knowing of course that I was being called in. I tried explaining that to the young lady, but she said that she didn't understand and it was better if I spoke to a GP. I agreed, and an appointment was made for a Thursday afternoon "some time after two o'clock!

On the Wednesday after noon about 14:20, I got a call. I could barely understand the man on the other end who had a very heavy Indian accent. I have been to India five times, and follow three Indian gurus on-line, so am not too bad with that accent, but this guy mumbled as well, and it was difficult to understand him. But I did get that the was saying that I was over-medicated, so I explained to him about taking meds on the day of the test. He said that didn't make any difference, and in any case, my TSH was suppressed. Again I explained very carefully, and politely about taking T3 meds and the TSH being suppressed due to that, and he said that he didn't know about that but he was happy to take my word for it.

The next day, the phone went again, and a lady GP said that she was phoning to discuss the results of my recent blood test. I said that a man had phoned the previous day, but as I could hardly understand him, I was happy to go over it all again with her. The same things were said about the thyroid test results, and she said that she had not heard about the TSH being suppressed by T3 meds, but would take my word for it. I also pointed out that I was under an endo for my thyroid issues, and had a consultation coming up, so she was happy to leave the matter with them.

A week later, I received a letter from the surgery telling me that my request for thyroxine had been rejected, I should not take thyroid meds for two months, and then they would test me again. I went to the surgery, and got to speak with a lady who introduced herself as the 'Complaints Manager'. I related to her all the details, she made notes, and then said that she would go and see a GP when one was free. Ten minutes later, she was back. She said that the GP upheld the decision to block my medication, and that they had told her why, but as she wasn't medically trained, she couldn't tell me what the reason was. I told her that I was not accepting that so she made me an appointment to see a GP face-to-face the next day.

This practice seems to have a revolving door for doctors, and I had never even heard of the one who I saw the next morning. But he did listen, tried to argue with me about the levels, and in particular the TSH. He argued that it was 'my theory' about the TSH being suppressed by T3 meds. So I showed him a couple of print-outs of previous thyroid results, also showing him my suppressed TSH. I asked him why the endo (a Professor no less) had not stopped my meds. He looked at his computer screen and announced that all my thyroid test results were the same. He then gave me an apology and said that he would give me a prescription for the thyroxine.

Moral? Persist, use evidence, don't give in.

[HowNowWhatNow]

What a massive waste of yours and everyone’s time - all done to try to deny you the meds you rely on to survive.

Well done for fighting your corner.

[SlowDragon Administrator]

well done for persevering

here’s some more for your “arsenal “

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

[Hypopotamus in reply to SlowDragon]

Thanks for that SlowDragon. I am thinking of making a complaint so will add that. I did carefully explain to all three doctors involved that I am not trying to be cleverer than them, but simply give them information that will help all their hypothyroid patients.

[waveylines]

well done you!! The ignorance of GPs knows no limits. They should at least try listening to the specialists you are under and read their letters!! I have very little faith in GPs these days and cross check everything they say or do. The final straw for me was when a GP didnt know basic pharmacology and thought I was on three tablets of the same kind (I wasnt) and I found myself explaining what each drug is and what it does. Glad you told me she said I was going to stop two of them. That would've made me exceedingly ill said I. At the time I thought she was a student......then found out later no she is an "experienced" GP! You would think she couldve at least checked in her pharmacology book before making such a rash decidion......but no. Such a gung ho approach to medicine destroyed any final tenous strands of my faith in GP competancy. I approach them with care these days.......& keep my contact minimal!! I am well not because of them but despite them.

[Hypopotamus]

I asked why they didn't just leave things to the endo who I have been under for 22 years, but no answer. I also asked if a patient is over-medicated isn't the correct procedure to reduce their meds rather than stop them. Answer: I have to get on - there is another patient waiting to see me.

[Sparklingsunshine in reply to Hypopotamus]

Hi

That's shocking story, well done for fighting your corner. What concerns me are all the millions of NHS patients who are not as well informed or as tenacious as you are, being fobbed off or dismissed by GP's and whose health is suffering accordingly.

Many people still think doctor knows best. Its quite scary when you think about it. You're placing your health and wellbeing in the hands of people who often don't know as much as you do.

[shaws Administrator]

GPs seem not to have any knowledge/training about dysfunctional thyroid glands at all.

One of mine phoned to tell me "your T4 is too low and your T3 is too high. me "yes doctor and that's because I take T3 alone so T4 will be low. He then said but T3 converts to T4 - "no Doctor that's wrong T4 is supposed to convert to T3

[Hypopotamus in reply to shaws]

I asked the last GP if they still only receive six hours training on the thyroid. He looked a bit shocked and said that he wasn't going to answer that question. I thanked him and said that he just had. The standard is clearly too low, and we are talking about peoples' lives and health issues.

[Framboise]

This makes you want to weep doesn't it! Who are these people who call themselves doctors but can't be bothered to read medical research in their spare time! My surgery left me for 8 years because they couldn't prove what was wrong as my blood tests were oh so normal! When I put together a chart of them and showed the GP she admitted things were far from normal and sent me to Dr Skinner, but then she refused to treat me in case it went wrong and I sued her. No thought that I might sue her for non-treatment! She retired, but then finally, a few years ago, a different GP told me that he was annoyed that he wasn't allowed to carry out the correct tests for thyroid function, and asked if I had any idea how many people in the UK had thyroid problems but weren't being diagnosed or treated. I replied that yes, I did have an idea. That GP retired and once again no-one in my surgery is the slightest bit interested.

I think, from things you've said here that we 'met' on a couple of the thyroid forums about 22 years ago. I'm glad the Professor is still interested and well done for persevering!

[Hypopotamus]

Sometimes things are so bad that I just have to laugh. I got a call from my local hospital today to say that the blood samples that they took from me last Friday were not collected by the hospital where my endo works from. Hence I have to go in for another 'stab'. If I was told that the NHS employ specialists to make things worse, I wouldn't be at all surprised!

[waveylines in reply to Hypopotamus]

Honestly Hypopotamus nothing surprises me anymore. Infact things are so bad that nearly 3 months on am still waiting for a letter from a consultant I had inital appointment with. Waited 7 months to see him, now spoears to be months of backlog in admin to write a letter to GP & copy me in. Its a joke! Xx

[Tugun]

Persistence wins again.

[Tugun]

The hardest thing for me is to remain calm and "pleasant" when dealing with these situations.

[Hypopotamus in reply to Tugun]

Yes, it is ironic that we go to these people to treat our disease, but they cause us more dis-ease than we go in with.

[Tugun in reply to Hypopotamus]

Yes 😃👍

[Hillwoman]

I don't know why I'm still shocked after all these years of dealing with this woeful bunch myself and reading of other people's travails, but here I am, with my jaw on the floor!