I have been working with a new GP since end of June last year following the retirement of my previous quite obliging if not pro active GP.
When I first spoke to the new GP I had NHS results showing TSH 0.014 miu/L [0.35 - 4.94]. with fT4 @ 17.3 pmol/L [9 - 19]. She phoned to tell me I was developing hyperthyroidism, whatever was I taking? It was Thyroid S and I was in better health than I had been for years. As she was in such a tizzy and MMH had just come back with fT3 at top of range I agreed to reduce the dose. Then no Thyroid S so I had just received Thyro gold to try and used it for a week/ ten days and had a permanent upset stomach when I had another phone call about the blood test taken on day 3 of Thyro gold. This time TSH 0.014 miu/L [0.35 - 4.94] and fT4 9.8 pmol/L [9 - 19] . A note from the lab querying the very significant drop in fT4 in such a short time. They wondered if it should be redone on a different analyser.
I asked during g that call if she would restart levothyroxine as I was sure the bovine wasn’t agreeing with me. The answer was “it’s not that simple I cannot”. However she did take up with biochemistry at the hospital the future testing given I was not on levo but using ndt instead. The6 finally got back to her and advised her how to by pass the standard lab and have tests done with different assay. Ideal! However due to Covid vaccination and the blood tests being “ not urgent “ it was March before I had a date for the blood draw.
She was taking the bloods and sending off as it was not a standard test and not for the lab usual methodology or assay. I had had MMH tests done prior to this and took them along to show her. TSH 1.38. range 0.27 - 4.2, fT4 4.8 range 12 -22 fT3 0.7 range 3.1 - 6.8. Obviously she was delighted with the TSH, however I pointed out that I function better with thyroid hormones that a pituitary hormone. No real conversation after that. Agreed she would phone in a week to discuss results, as long as they were available. She was concerned that ot would take longer given the unusual nature of the testing.
A week later she kept the telephone appointment, I had seen TSH only result online the day after the blood draw and usual comments about no further testing as TSH in range at discretion of duty biochemist. Not sent to Senior Biochemist as it was supposed to be. This time she was delighted to see TSH now up to 3.41, “a much better level” maybe for her but not me. She did agree to restart levo if I assured her I wouldn’t be taking anything else again. So a little white lie was told. She agree she was “out of my depth” and woukd referto an endo.
I have now seen the referral online, it’s full of rubbish bearing little relation to the facts. From the outset she has the date I was diagnosed as 1980, that’s as far back as my record goes. She states “ coded on her records from 1980 onwards although she felt the diagnosis was about 50 years ago prior to this.”. No I told her I was diagnosed about 1962 ish.
She then states I haven’t felt really well for about 1 year. No mention of years of neglect at that practice including a reduction in levo when TSH was 5.6 and fT4 13.6 range ge 12 - 22. She did include to endo dept the MMH results but did not include ranges. (Do they not even learn that at med school any more? )
To add to the joy yet again she has ignored my comments that I have never seen an endo, and states she is “re referring”.
The final paragraph states “I’m afraid I do not feel I have the expertise to go into adequate detailed explanation about her medication, interpretations of her private results and symptomatology with respect to her thyroid.” So honest at least. Sadly the last sentence “I would be grateful for your overview assessment of her and subsequent advice for long term stable management.” doesn’t leave me at all confident that I will be seen. It suggests to that she wants advice on how to proceed only.
I do despair! Now to use copy and paste from this post to write a little note to the Practice Manager on the subject of poor care and GPs re writing facts. I always note that this doctor has the most appalling grammar, both on my notes and in correspondence with hospital departments. I hope to ensure my fury and/or any spellcheck doesn’t detract from the points I need to raise.
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Miffie
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Oh Miffie, what a trial. 3 drafts, if it were me writing it! First one to write it all down / express it and know what you need to say, second to see if the structure is right for the thrust of the argument and third to get rid of any excess verbiage!
Are you actually taking some NDT again at the moment? I think you are but I am confused! Doesn’t take much on this dose, lol!
I am still drafting, trying to be consise. Yes I am taking ndt with the levo. I can’t stay this way forever. I decided I needed a clear visual representation of the seriously odd results in recent years so spent hours copying test results from 2016 from my health record and calculating percentages. These I plan to use along with private results in a graph to demonstrate the ups and downs in my time at this surgery. Not least that more than fifty years after diagnosis I have had a TSH reading of 5.6 and fT4 only 13% into range they reduced levo by 50% five days a week and 25% two days a week.
Now that fT4 is at minus 72% I feel challenged. Take care
The visual representation sounds like a great idea. It must be so painful dealing with this with fT4 @-72%, particularly when you shouldn’t be having to deal with it at all. We seem to treat thyroid patients in a strangely backwards way at this point in history.
Hey Scrumbler is it really possible to bypass a GP and look after our own thyroid health? I just got caught up in annual blood test and GP on the warpath when he saw my thyroid results. Being to feel like I am living in a Dictatorship country rather than a democracy.
As far as I’m aware no one can force you to agree to an annual blood test. If you are testing privately and self medicating the GP test is academic and only likely to cause you mayhem.
Thanks Mazzer my GP test has certainly caused me mayhem. Have been caught up in the problem somewhat. But now I living in the solution by not attending GP surgery for any future thyroid blood tests.
I go my own way with NDT privately prescribed and my GP knows mainly because I wanted it noted that I have an autoimmune disease and that they are aware of the fact because of the implications. Eg developing other autoimmune diseases, quick diagnosis and treatment etc. I do my own tests and send a copy to the surgery although I don’t think they take any notice!
You are extremely fortunate, my prescription ndt was withdrawn years ago and now I find GPs have no idea what it is.I have several autoimmune conditions not connected to hypothyroidism as my thyroid was destroyed by radiation therapy in the 1950s.
GPs practicing today have little no knowledge of medical procedures and methodologies of 60/ 70 years ago unfortunately.
I am amazed and delighted to hear there is one GP in the country prescribing ndt even if it needs to be a private prescription. Is it not very expensive?
I am very conscious of future tax bills eating into my pension along with no interest on savings. Obviously we need to pay back the costs of the pandemic so accept tax increase without complaint. Not being political.
Ah well, she is a private doctor, not a GP. And I have to pay the cost of the prescription as well as the NDT, but for as long as she will do it and I can afford it, I will continue. It’s not cheap! There are I believe a few GPs in the UK who will prescribe and unless I’ve got it wrong, on the NHS as well, but mine wouldn’t- I did ask her! However I do find it more effective for me than T4 and T3 combo
My understanding is that no GP can initiate ndt. A few endos will and then pass care to GP. I have never heard of any GP in England initiating it on NHS for many years. Maybe a recent change? Does not happen in the CCG in live in.
I’m sure you’re right Miffie. You have more experience than me by the sound of it. A year or two back Helvella posted a huge spreadsheet of all the GP practices in the country showing the few where NDT was prescribed. I’m sure it will have changed since then. I don’t know if there is an update one?
Sorry - it is woefully outdated - I have given it up. But...
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This has made for fascinating reading thank you helvella . So the CCG I am covered by is the second highest provider of T3 in the country. Thr PCN is a little over halfway through the amount spent by all PCNs and my surgery has a big zero! Why am I not surprised? There are only three surgeries in the PCN. Why do ai live too far away from the others?
It’s a totally amazing resource so very many thanks.
PS apologies re personal pronoun. Must proof re in future. 😏
Ohhh Miffie love your rant. If I allowed myself to rant about my GP I would not be able to stop. At present, I am in a similar situation as yourself re: GP thyroid blood results, after dosing with NDT and levo combination. GP is totally ignorant when it comes to interpreting thyroid blood results when one has dosed with NDT. I am in the process of changing my GP....could it get any better, could it get any worse? Only time will tell. Hang on in there lovely and go teach your GP. When the pupil is ready the teacher will appear!!! You are the teacher hey
I have been sweetness and light for years in the surgery, and so charming once I decided to self source. Keeping the peace always worked well, however I seem to have met a new level of ignorance. The woman is so ‘non’ a level of vagueness that defies credibility. If I let myself, as I did during a sleepless night have an uncontrolled rant it might cover at least ten sides of A4. Trying to be succinct in my letter to the Practice Manager.
I had the last GP well trained, she was a partner and knew I had been badly treated by one of the team and I hadn’t made a complaint, think she knew I had loads of ammunition to make a fuss and appreciated that I had not done so.
You have to leave that doctor or surgery. I gave up reading after 'she was delighted with the tsh '- when your T3 and t4 were both under range! Did she not notice?
I wish you well! Start with private tests and seeking out a good Endo in your area.
No choice but to stay with the current surgery due to our location.I was previously self sourcing but as I said to Hidden I was left in a dreadful situation last year with no Thyroid S.
I know I am wmuch better on ndt having been prescribed it for many years following diagnosis in the 1960s.
I only let her get involved on the off chance she might refer to an endo who might be helpful. When Thyroid S supply vanished and I was unable to tolerate Thyro gold and refused levo I decided maybe I should play nicely.
I have been having a bit of a fight with the labs as they refuse to test T3. The same blood tests can be used whatever you are taking, the GP or the nurse just has to write in big letters and short words "Taking T3, please test". The guidelines state if you are taking T3 they have to test for it. NICE guidelines also state if your TSH is below the range, they should test the T3. The lab did not and I threw a hissy fit, I am waiting for an apology, which I know will never come.
Well no one can convince the lab here of that which is why the GP had to make a particular arrangement with biochemistry for full results. Unfortunately even that market for the attention of Head of Biochemistry wa done by the lab using standers basic.
Every test they have done in the 14 years I have come under this CCG and I have had a print out of the results and/or access to my record online I see they state fT3 requested. fT3 not done as this is only done at the discretion of the biochemist. Even fT4 requests are refused if TSH is ‘in range’.
If you can point me to those guidelines I will be very grateful. Many thanks
Check the NICE guidelines for thyroid testing. In Wales there is a document "Prudence Wales" which tells labs only to test what they think, not what the GP has asked. The whole document is really a guide to save money although it does not say that anywhere. It even has pretty pictures to help the health professional read it! Now where did I put that brick wall?
It does seem that the lab has discretion, but they are sworn to do no harm. I have told them the two are not compatable, as they do not know the patient or the patient history. It seems they go by what the GP or nurse writes on the form to see if they can be bothered to test something. It is ludicrous. I took it up with my MP but he did not even bother to reply.
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