How to make a complaint to my local CCG. Any advise would be most helpful

[cheslee]

I have been diagnosed Hypothyroid with positive antibodies since 2015.

I have always only been prescribed Levothyroxine and currently taking 175 mcg. ( 1 x 100, 50, and 25)

I have been telling my GP all this year that I feel worse on this higher dose.

At first I thought it was the first addition of 25 mcg TEVA brand and stopped taking it, making sure I did not have the TEVA brand again.

At my next appointment my GP was concerned that my TSH went to 4.1 and put me back to 175 mcg wanting to lower my TSH

At that time my GP sought her own advice from her Endo and the advice came back to continue with 175.mcg to lower the TSH and to have a morning cortisol blood test. At no time did he ask for T3, T4. results.

My GP has consistently said that she was not allowed by the CCG to test for T3 or T4 or Vit D, or put me on a T3 Trial.She tells me she is only able to test my TSH even though my TSH keeps going up. However she was happy for me to find a private Endo who would consider prescribing T3, as she could not even do that under a named private patient prescription.

This appointment has now taken place and you will never guess what my Endo said:-

I have been over medicated since Jan 2018.

My T4 has risen to 26.2, above normal.

My T3 is 4.6 and my TSH has finally dropped to 1.5 the lowest yet.

I am to stop my extra 25 mcgs of Levo until I am back to Jan 2018 levels,

and then he will be starting me on a T4 and T3 trial.

Throughout this last year I have been having my own private bloods taken in the hope I could provide my GP with the evidence the medics love. But to no avail. But it did pay off in the end as I was able to provide these results for my Endo.

Fortunately have been following thyroid UK for a few years now, and gained a lot of knowledge, which I thank you all.

However I am not a medic and sometimes I get quite overwhelmed with all the knowledge out there.

I am now going to make a complaint to my CCG, about the organisation and not my GP

The CCG for making me worse;

1, preventing the GP from doing the necessary T3, T4, blood monitoring of my Thyroid.

2, the CCG for stopping the Labs processing GP requests which are not on their 'allowed to do list'

3, the CCG for making me suffer unnecessarily for a year and making my health worse to the extent that my whole way of life has changed for the worse.

I am not all optimistic that I shall even get a reply; however it will make me feel better to spout off at them from a patient perspective as I really think the paper pushers have no idea what it is like for us patients suffering.

Dear friends please feel free to provide any helpful advise and suggestions.

Many thanks Cheslee

[MissGrace]

I think it will be interesting to see how they respond to your situation. I think you need to contact your CCG and ask about their complains procedure and who to address your letter to. I’d be tempted to send a copy to my MP, the Health Secretary and the Health ombudsman as well, telling them this is a letter you have sent to the CCG and would appreciate their support and let the CCG know you are doing this.

Clearly your results are unusual in that the T4 is high and so was the TSH at one point. I’m sure someone on here, (greygoose is very good at this kind of thing), can give reasons why that might be. But as you clearly point out the lack of testing of anything but TSH has hidden issues about your treatment that were making you even more unwell. And even when your TSH reduced, it still seems like it was probably within the normal ranges and not suppressed. Ultimately, if you had not paid for private blood tests, you would never have known and that can’t be right.

I await with interest what happens.

And thank you for taking up the issue. As you say, it may make no difference, but who knows, if enough people protest, maybe, just maybe, someone might listen. And I think it’s important to register a protest if you feel you have been unfairly treated.

I’m so pleased you have got a trial of T3 and I hope this helps your recovery. 🤸🏿‍♀️ #fightforyourthyroid

[greygoose]

I think, if it were me, I would be complaining about that endo! He's talking utter rubbish! If your FT4 is over-range, then yes, you do need to reduce it a bit - but only when you add in the T3. There is absolutely no need for your TSH to go back to whatever it was in Jan 2018 - you don't actually say what it was - before adding T3. The addition of T3 has nothing to do with your TSH, it's to do with how well you convert, and you will only know that by comparing your FT4 with your FT3. And, to be fair, if your TSH was over 4 and rising, your FT4 and/or your FT3 were bound to be low. It's when the TSH comes down to about 1 that it's crucial to test the Frees.

Sorry, I know that doesn't help you much, but I did think you ought to know so that you can fight your corner with the correct information. You don't want any surprises in what they throw back at you, do you?

[cheslee in reply to greygoose]

Thank you for your reply and APOLOGIES Greygoose for getting a bit muddled.

My own Endo seen in Jan 2019 wanted to get back to my Jan 2018 results especially with my T4 not the TSH.

These are my Medicheck results Jan 2018

TSH 3.57 mIU/L 0.27 -4.20

FREE THYROXINE 19.6 pmol/L 12.00 -22.00

TOTAL THYROXINE (T4) 117.0 nmol/L 59.00 -154.00

FREE T3 4.57 pmol/L 3.10 -6.80

THYROGLOBULIN ANTIBODY *>4000 IU/mL 0.00 -115.00

THYROID PEROXIDASE ANTIBODIES*351 IU/mL 0.00 -34.00

ACTIVE B12 *> 256.0 pmol/L 25.10 -165.00

FOLATE (SERUM) 8.89 ug/L 2.91 -50.0025

OH VITAMIN D 93.9 nmol/L 50.00 -200.00

CRP -HIGH SENSITIVITY *6.3 mg/l 0.00 -5.00

FERRITIN 42 ug/L 13.00 -150.0

These were the Medicheck tests I had taken in Jan 2019

( Just the Thyroid function)

TSH 1.35 mIU/L 0.27 - 4.20 - (lowest ever)

FREE T4 *26.200 pmol/L 12.00 - 22.00 - above average and border Hyper

FREE T3 4.61 pmol/L 3.10 - 6.80

Really sorry about that.

Thanks Cheslee

[greygoose in reply to cheslee]

No problem. But, even in January 2018, you had a conversion problem, which was obvious. In your latest labs, that problem is even more obvious because your FT4 has gone so high that more T4 is being converted to rT3 than T3 so your FT3 has hardly risen, despite the extra T4. Yes, your levo should be reduced, but the T3 should have been added at the same time. No waiting was necessary.

[cheslee in reply to greygoose]

Many thanks Greygoose for your reply. If that is the case I cannot help but wonder why he is making me wait 5-6 weeks. He is clearly going to start me off on T3 then?

I know nothing about rT3, I will start to read up: should I be getting that tested as well. My Endo did not mention rT3 at all.

Cheers Barbara

[greygoose in reply to cheslee]

Who knows why he's waiting. Perhaps because he just doesn't know that much about treating hypo. And one can only hope that he does intent to start you on T3, but it's impossible to understand how an endo's mind works. They are an enigma and a law unto themselves!

rT3 is not really anything that you should be concerned about, except to know that if your FT4 is too high, the T4 will be converting more to rT3 than to T3. So, it's a bad idea to have the FT4 right at the top of the range, because it won't result in more FT3 - possibly les FT3.

Testing rT3 is very expensive, and doesn't give you any useful information. If it's high it could be due to a number of things, but you won't know which thing it is - if you see what I mean. If you read old articles about rT3, you will read that it blocks T3 receptors. But, recent research has shown that this is not true, because it has its own receptors. But, if it's high, it does mean there's a problem somewhere, hindering the conversion of T4 to T3, something like high cortisol, or low ferritin, an infection or low-calorie intake. Up to you to find what is wrong. But, you'd probably know something was wrong, anyway, and would do the necessary tests.

[cheslee in reply to greygoose]

Hi grey goose, finally after waiting 2 years I am now on 10 mcg T3- whoopee.

Thanks for all your help.

[greygoose in reply to cheslee]

You're very welcome. And I'm so glad to hear that.

[SilverAvocado in reply to cheslee]

A friend of mine has a very similar pattern of results.

A high TSH

An over range freeT4

A very low freeT3

Of course doctors will act as if they've never seen such a thing in their lives! It's not very common on the forum, but we do see it occasionally. You've got very poor conversion, and as T3 is the active hormone, your TSH is complaining because you can't manage on the amount of T3 your body is able to make.

You may already know all this, Levothyroxine is made out of T4 only; a healthy thyroid would produce mostly T4 and a little T3. T4 is only a storage hormone, and to use it your body has to convert it into T3. When we're ill, our bodies can get less good at doing this convertion.

The only real treatment is to add a little T3 medication in with the T4 your already getting. Unfortunately your doctors are making a huge meal out of it.

I agree that you're a clear case of someone who needs a complete thyroid panel of blood tests to be understood. My friend was also said to be 'overmedicated' by negligent doctors who looked at the freeT4 but not the freeT3.

[serenfach]

Keep it simple. Just ask the questions and do not give a reason for asking as they can then use this to divert the question (the blame the victim is common). I know you want them to know that you have suffered, but believe me, they are not interested and it clouds the issue. When you get the replies, you can then prove that they are causing harm and that is the time to take it further. So:-

Can the GP order the necessary blood tests TSH, T3, T4, for a full thyroid picture?

If not, why not?

Can you point to the legislation that allows CCG to stop the Labs processing GP requests?

As the labs and the CCG do not have a full medical history of the patient, how do they protect the patient from harm by not running the tests?

What safeguards are in place to prevent harm to the patient by not running the tests the GP thought necessary?

Good luck and if you get a reply, please share!

[cheslee in reply to serenfach]

Hi serenfach - thank you so much for your very helpful advice, which I shall use. Yes I will share the CCG reply with the forum.

Cheslee