Latest response from my NHS Endo who thinks I'm overmedicated and my emailed response

[NWA6]

So my background. Hashis, 10yrs, ever increasing Levo, sometimes successful but never stable and constant!y back and forth to Dr looking for reasons as to why I feel unwell. Dr never agreed that it was because I was inadequately medicated and so we fell out regularly. Fast forward to finding this forum and the beginning of the year and then the advise that I'm probably not great converter and I'd need to add T3. I have done so now for about 8\9wks and from day 1 i felt the benefits and am doing amazing!y well, as if I do not have Hashis at all.

I have agreed to keep seeing my NHS end despite her sayings thimsT3 is dangerous and she will never prescribe it, because one day I'd !like to see her reAlisation that she has been wrong she will hopefully learn something from my case.

So her letter says

'Many thanks for getting your blood test done. They show that you are currently over replaced on your current combination of T3\T4. Your TSH is suppressed and unrecoverable at <0.03 (0.35 -5.5). Your Free T4 is stable at 16.2 (10-20) and your free T3 is now 4.8 (3.5 -6.5). These results highlight some of the difficulties in thyroid rep!pavement when combinations of T3 and T4 are used.'

Here is my response to that letter

'Thank you so much Dr X for taking the time to follow up our latest consultation with my blood results. It was exactly the response that I was expecting after your damning words on the perils of T3. I am disappointed to note though that you haven't included any of the links to the studies that you claimed you had read that supported your notion that T3 is harmful. Instead you talked about an article in the Daily Mail, about sub clinical patients. You had said at the time of our consultation that you would pop them in a letter to me. I to have made it my mission to read and educate myself on my condition and the possible reasons as to why I was still so symptomatic while on Levothyroxine alone for the last 10yrs. You'd only have to speak to my former GP to ascertain how many symptoms and bloodtests, MRI, heart scans I've had done over the years to know that I have been tenacious in finding out the cause of my physical and mental decline.

The solution for me is this current combination treatment and if you would invest some of your precious time in reading up on the array of information that is freely available to the lay person then I would hope that you would soon see the error in your thinking. For example once a person begins replacement treatment then TSH testing is not an an accurate indication of health. There really is no need for your alarm that mine is suppressed. My T4 result is adequate and my T3 is slightly below par for someone on 15mcg of Liothyronine and although most of my 20 plus symptoms have completely vanished i did still have some constipation and painful and heavy periods, as such I have increased my T3 to 20mcg per day and now those last 2 symptoms have resolved. I take 10mcg with my Levo in the morning and 10mcg before I go to sleep at night. I have never slept better or more soundly since adding T3. I fall asleep within 20minutes of going to bed and no longer suffer from the horrendous insomnia that has plagued me all my life. I have absoulutely no symptoms of overmedication. My Apple watch tells me that my resting heartbeat is an average of 64 bpm and this greatly improved from previous readings of 33bpm, which would make an Olympic athlete proud but which I'm sure you'd agree was worryingly low for someone who hadn't been able to do any sport for nearly a year and actually i was virtually household before beginning combination treatment.

I know that we have another consultation booked for 3mths time and I really do look forward to updating you on my fabulous progress and recovery, I know that my four children (aged 11-17yrs) and my husband are so very grateful that Prof. X has realised that T3 is the answer to so many like myself

Please be assured that I will carefully monitor my FT3\4 results and symptoms for over or under medication and that as my sister has Graves i am VERY much aware of how horrible and life limiting it is to experience too much T4\3'

Do you think she'll read it? I don't really care, at least I'll have a recorded response and it was cathartic to write.

[humanbean]

Brilliant letter, NWA6 ! I hope you get a serious reply, and I would be interested in knowing her response if it wasn't too private.

[NWA6 in reply to humanbean]

Thanks humanbean . I'm more than happy to update, I just don't think there'll be a response

[SlowDragon Administrator]

Brilliant .....have a medal....have several ...and a big hug

Would love to be fly on wall when she reads it!

Here's a few more bits of research to take to next consultation

thelancet.com/journals/land...

Overall, current pricing of liothyronine has substantially reduced its prescription, engendered widespread variability in patients' access to it, and increased its overall cost to the NHS

endocrine-abstracts.org/ea/...

Some patients use liothyronine as thyroid replacement therapy as an alternative to L-thyroxine. Trials have examined the potential benefits, but there is little data looking at the relative safety of these two agents. All patients receiving thyroid replacement therapy between 1993 and 2014 in Tayside were included in a cohort study (n=34 355; 319 500 patient years of follow up). Overall 33 955 patients received only L-thyroxine, and 327 received liothyronine in combination with L-thyroxine and 73 on liothyronine alone (total=400). Using unique patient identification numbers, biochemical, prescribing, hospital admission, radioiodine and general registry office data were linked.

Patients initiating treatment with liothyronine were younger (48 vs 59 years P<0.001), but there was no gender difference (85% female vs 82%). They were more likely at baseline to have had thyroid cancer, have a history of previous hyperthyroidism and be treated with anti-psychotic or anti-depressant medication. They were less likely to have cardiovascular disease or be treated with a statin. During a mean follow up of 9.3 years (±5.6 years) proportional hazards ratios (HR) were reported after adjustment for age, gender, baseline TSH, number of thyroid prescriptions and history of thyroid cancer or hyperthyroidism. For patients taking liothyronine there was no increased risk of death (0.78; 95% confidence interval: 0.54–1.11), fractures (HR 0.79; 0.49–1.27), atrial fibrillation (HR 0.91; 0.47–1.75) or cardiovascular disease (HR 0.90; 0.42–1.92). There was an increased risk of mental health disorders (HR 3.27; 1.02–10.52) for patients taking liothyronine alone, but not for those taking a combination therapy. There was an increased incident use of anti-psychotic medication (HR 2.26; 1.64–3.11).

No increased risk of fractures or atrial fibrillation in patients taking liothyronine compared to L-thyroxine was demonstrated. There was an increased risk of mental health disorders if liothyronine was used alone

Approximately 3% of UK population are prescribed Levothyroxine

bmcpublichealth.biomedcentr...

From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3].

UK population =66.04million = 3% is approx 1981,200 on Levothyroxine

It’s widely accepted in medical circles that approximately 10-15% of patients do not recover full health on Levothyroxine mono therapy

sciencedaily.com/releases/2...

ncbi.nlm.nih.gov/pmc/articl...

….”authors have questioned the efficacy of l-thyroxine monotherapy because about 10% to 15% of patients are dissatisfied as a result of residual symptoms of hypothyroidism”

Research shows 20% Patients with no thyroid function can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

[NWA6 in reply to SlowDragon]

Awwww Thanks SlowDragon You know you're the best

[SeasideSusie Remembering]

Well done Paula, fabulous letter. Looking forward to further responses.

[NWA6 in reply to SeasideSusie]

Thanks SeasideSusie I really hope there is a response but it's doubtful. We'll probably have to wait till the next appointment in Aug

[Aurealis]

Your letter is sound, but you know I’m not sure she’ll read it all, or will pick out the most important bits. As the cathartic feelings generated by writing it have been achieved, I wonder if you should edit it and give her the key bits ‘on a plate’ so to speak? I always think it’s best not to burn any bridges - you know, for when she’s the last endocrinologist in the country!

“Thank you so much Dr X for taking the time to follow up our latest consultation with my blood results.

Once a person begins replacement treatment then TSH testing is not an an accurate indication of health. There really is no need for your alarm that mine is suppressed. My T4 and T3 are in range.

The solution for me is this current combination treatment. Most of my 20 plus symptoms have completely vanished i did still have some constipation and painful and heavy periods, as such I have increased my T3 to 20mcg per day and now those last 2 symptoms have resolved.

I take 10mcg with my Levo in the morning and 10mcg before I go to sleep at night. I have never slept better or more soundly since adding T3. I fall asleep within 20minutes of going to bed and no longer suffer from the horrendous insomnia that has plagued me all my life. I have absoulutely no symptoms of overmedication.

I know that we have another consultation booked for 3mths time and I really do look forward to updating you on my fabulous progress and recovery, I know that my four children (aged 11-17yrs) and my husband are so very grateful that Prof. X has realised that T3 is the answer to so many like myself

Please be assured that I will carefully monitor my FT3\4 results and symptoms for over or under medication and that as my sister has Graves i am VERY much aware of how horrible and life limiting it is to experience too much T4\3”

[NWA6 in reply to Aurealis]

Thanks Aurealis I've already sent it. After 10yrs I'm burning everyone's bridges! Lol I'm no longer going to be held hostage to ignorance and egos!

[Aurealis in reply to NWA6]

Good for you, good luck

[Gingernut44 in reply to NWA6]

Well done Paula - you tell em

[JGBH]

A brilliant letter but I sense there will be an ego crisis from the doctor! Looking forward to hearing how she will react if her arrogance and ignorance don’t prevent her from doing so. Good luck.

[NWA6 in reply to JGBH]

I know 😱 I feel so nawtee now that I’ve sent it 😂 Well she started it! My first ever meeting and she said ‘I will never prescribe T3’ 😩

[JGBH in reply to NWA6]

Totally understand your frustration, our frustration really! Most of them are useless. It will be interesting if she replies though, although you might need to find another endo.

[NWA6 in reply to JGBH]

Pah! I don’t need her! I’m doing her a favour by visiting her because she said ‘I won’t prescribe T3 but will you come back and see me again, I’d be really interested to see how you’re getting on’

I’m more than happy to continue to show her that this IS the answer for me and to show her that if used appropriately T3 is not harmful in the slightest. But let’s see. Maybe she won’t be able to take it 😬

[m7-cola in reply to NWA6]

@Paula6. Well done! You’ve stood up for yourself. Managed your health regimen and given a clear lesson to the medic. Of course she might not be big enough to ‘receive’ it and you haven’t let her down lightly. So be it!

[Hillwoman]

Brilliant. Well done you for standing up for yourself!

[NWA6]

Thank you to everyone’s uplifting positive responses ❤️ what a bloody lovely bunch you are. I’m so grateful for all the responses. So glad I’m no longer on this journey alone 🤗

[MissGrace]

Yay! Love it. Well done. x 🤸🏿‍♀️🤸🏿‍♀️🤸🏿‍♀️🥛

[janey1234]

Well done you!!!! 🙂

[silverfox7]

Yet another uninformed doctor ( not exactly what I'm thinking!), that doesn't know results are read differently when taking any form of T3. TSH is supposed to be suppressed if your resultsxare optimal but FT4 can go lower in its range but FT3 should be high in its range but never over! It no surprise many panic that we take T3 as sadly they haven't got a clue!

[NWA6 in reply to silverfox7]

I know right!! 😣 And c’mon my FT3 had only risen to 4.8!! No where near the top end 😩 Head.Bang.Wall 🤪

[silverfox7 in reply to NWA6]

I'd like to think that it's so they don't kill us as they haven't a clue but then most of us can get our head around it with out an expensive medical degree. There is another thing though having being working with medical students there are also a few that pushy parents push them into it! I've often thoughtvalong my thyroid journey that I would love to talk with someone else who has the same issues and tells me how it is so that's to Thyroid Uk that is so easy to do now!

[serenfach]

Oh well done! It must have taken you a while to write such a clear and damning response to her ignorance. I think she will read it, and of course dismiss it initially, but it may niggle at the back of her two brain cells, and if she can get past her ego, she may learn something. I think when you see her she may see how well you now look. You could also point out the money you are saving her practice as you are now well - that may get through as they are so money conscious these days.

Sending you a virtual choccie cookie to keep you going! And a hug!

[NWA6 in reply to serenfach]

🤗 oooo thanks for the choccie cookie and hug 😎 I honestly rattled the letter off in a minute or two. It just flowed. I must have been thinking about it these past few weeks since my appointment 😏 let’s hope she is human and does let it niggle at her 😉