Help to write a letter to GP practice manager to increase levothyroxine dose.

[Georginaschof]

Good morning,

Sorry for the long post , I would really appreciate some help in pleading my case in writing to the practice manager of my GP practice to ask for an increase in dose of levothyroxine, this will be highly unlikely but I don't know what else to do,

I haven’t wrote anything on here since around January asking for advise on how I could persuade the GP not to reduce my Levo dose from 100mg to 75mg based on suppressed TSH, I explained that i certainly was not over medicated based on hypo symptoms and felt I put a decent case across with me focusing on my low free t3.

I had self sourced some T3 medication but stopped this 2 weeks prior the test to get an accurate result, I was silly enough to mention this in my repeat prescription which is why I was hauled in for a test. I no longer take T3 medication

These were the test results that saw me reduced to 75mg of Levo

11th Jan 2024 (fasting)

THS 0.04-(0.55-4.78)

Free T4 11.8-(10.00-20.0)

Free T3 3.6 -(3.5-6.5)

Based on me telling her of all my hypo usual symptoms, she went away and emailed an endocrinologist, who said I did need a dose decrease so that was that, I was put on 75mg of Levo.

It was also discussed at the morning Gps meeting who all agreed that my dose should be decreased

No one paid any attention to low t3.

I was first diagnosed with an under active thyroid in around 2018 with a THS of a whopping 147, I had become very ill by that point.

Levo was slowly built up to a dose on 125mg and this has been the only time I felt ok-ish.

After 12 months the GP said I was over medicated and tried to reduce me, I stood my ground and he let me continue on 125mg, telling me is wife was also hypo so he had a good understanding.

He is no longer works at that practice, TSH was only tested at that time.

All my test have a suppressed TSH and that has never changed regardless of dose

After my last test on 31 st October there is a note on that I’m over medicated

Those fasting result were

TSH 0.04 -(0.55-4.78)

Free T4 12.3-(10.9-21.2)

Free T3 3.7- (3-5-6.5)

What ever I do I cannot increase my THS it has been suppressed on every result since I started on levothyroxine.

I recently went down for a well women test for my cholesterol amongst other things on the 26 November, I wasn’t aware that they would test my thyroid again but they did. I took my 75mg as normal around 8.30 am had a bowl of bran-flakes and a sandwich before I left, the test was at 1.40 pm

Those more recent non fasting results were

TSH 0.03- (0.55-4.78)

Free T4 13.1-(10.9-21.2)

Free T3 3.6-(3.5-6.5)

There’s a note on the TSH which states thyroid verging on overactive, routine appointment with doctor, so I know what this will mean, I’m so weary with it all I’m losing sleep.

Following on from that that my serum cholesterol is 6.8 (0.0-4.0)

Calculates LHD 4.0 (0.0-1.9)

Im worried about that, im 60 this month and have been a vegetarian for 45 years, I eat very healthy and do some weigh bearing exercise daily, I am reasonably active, I don't smoke so I'm at a loss on how to reduce this, I know this is probably linked to low T3.

No vitamins were tested

I also have a high platelet count and a high percentage of hypochromic cells (not sure what these results mean)

Platelet count 501 10*9/L (150-450)

Hypochromic cells 2.5 (0.0-2.1)

Over the last 2 years whilst on 100mg of Levo I have developed debilitating eczema on the soles of my feet and palms of my hands and in addition to that and since I was reduced to 75mg have stated to have severe itching on the base of my back, stomach and neck, sometimes with a rash and sometime not, I don’t know if that would be connected.

I keep trying to write a letter to the practice manager to ask for an increase rather than another decrease but keep letting emotion get in the way 🙄.

Thank you so much for reading this x

[Tina_Maria]

Hi there, and I am sorry that you are having such a horrible time with all this. It is so frustrating to hear GPs and endos bang on about over-medication based on the TSH, when the FT4 and FT3 are lower than the median of the reference range!

I do feel for you, as I am having the same discussions regarding my suppressed TSH, which has also been like this since starting LT4 therapy.

In many thyroid patients, the feedback from the pituitary just does not work in the same way like it does in patients without the disease, so the pituitary 'sees' the LT4 and immediately reacts to it in a much stronger way than it would to naturally produced T4. I have included 2 publication, which highlight this fact:

pubmed.ncbi.nlm.nih.gov/249...

frontiersin.org/journals/en...

Your T3 is just within the reference range, so you definitely have a deficit and would need a higher dose of your medication. And your T4 is also quite low, so an increase is definitely warranted. You could argue that you are very symptomatic and therefore would like to trial an increase in 25 mcg levothyroxine. Even though your TSH is suppressed, both your T3 and T4 are very low and far away from the top of the range, so overmedication can definitely be excluded. In addition, HYPERthyroidism is associated with low cholesterol levels, so as your cholesterol levels are high, this can also exclude that you are overmedicated or hyperthyroid.

Cholesterol is a secondary cause of hypothyroidism and is very much connected to low T3 levels. Your high cholesterol level is not caused through a dietary issue, but is a metabolic problem and will be solved once you have enough thyroid hormones available. I attach two publications highlighting cholesterol and low thyroid hormones

ec.bioscientifica.com/view/...

onlinelibrary.wiley.com/doi...

Independent of your thyroid levels, have you tested your iron levels? Many thyroid patients have low iron levels and being vegetarian probably exacerbates the issue. I would check your levels and then start supplementing, if the levels are low. If your iron stores are too low or depleted, your thyroid hormones cannot work properly as you need iron to convert T4 to T3.

One last thing, a normal replacement dose for thyroxine is 1.6-1.8 mcg levothyroxine per kg of body weight. So someone weighing 63 kg would need at least between 100 and 113 mcg levothyroxine per day. This is established in the NICE guidelines, so physicians have to go by this guidance:

cks.nice.org.uk/topics/hypo...

I hope I have given you a few pointers for some good arguments why your dose should be increased irrespective of your TSH. If you still have problems, perhaps worth thinking about changing the GP practice?

[Georginaschof in reply to Tina_Maria]

Thank you so much for your in-depth reply, this information is so useful for me as are the links, it’s all so draining isn’t it and so frustrating. I will use and print the information to back up my case x

[Tina_Maria in reply to Georginaschof]

No worries, I hope it will help you build your case! Fingers crossed.

Wishing you strength and good luck! x

[Georginaschof in reply to Tina_Maria]

Thank you ☺️ x

[Fluffysheep]

I ended up writing a very long email to our practice manager a couple of years ago. It was when my endo had prescribed my liothyronine, I'd done the 3 month trial, and he'd written to the GP to ask them to prescribe. I was being passed from pillar to post, and a rather unpleasant incident occurred which then prompted the email.

I'll be honest, it took me about 6 hours. I listed my thyroid medical history, and all the details of how I'd got to the point of needing liothyronine. I then used medical journals and articles and quoted from them, as well as using data from the open prescribing website detailing the number of people in my county who were prescribed T3.

It took everything out of me, and I actually cried when I finally finished and sent it, and I was just mentally and emotionally done, and going through everything from the beginning brought the whole lengthy saga back to me.

Anyway, it seemed to do the trick, as within a couple of weeks I heard from the surgery that they had applied for an individual funding request which had been authorised, and I got my T3.

I know my situation is different, and that is is an increase in T4 you want, but the more you can evidence your reasons with inclusions of medical data/journals etc, then I think the more difficult they will find it to come up with a reason to say no.

[Georginaschof in reply to Fluffysheep]

Hi FluffySheep, thank you so much for that, hopefully I’ll have the same outcome and get an increase of Levo, I would love to have T3 prescribed but still have a good supply of self sourced left but stopped to keep a clear picture of how my T3 was doing without them. I know what you mean breaking down writing the letter, I’ve been exactly the same and to be honest it’s taking over all my thoughts at the moment x

I

[Catseyes235]

please do look at my posts re my really low TSH for over 20 years. Only one doc adamantly said I was over treated ..I did drop the dose and felt worse and had a mini stroke. I found an Endo who understood non conversion, added minimal T3, allowed me to gradually up my T4 by further 25mcgs no question. I feel better than I have in years. It is HOW YOU FEEL that counts. I too wish someone could put a succinct piece together for GPs who have bowed to NICE guidelines, rely on TSH, don’t recognise poor conversion and don’t often test T3. I wish you luck. I would demand an appointment with an Endo but if you feeling brave you could use your T4 to up your dose.

[Georginaschof in reply to Catseyes235]

Thank you so much for replying to me Catseyes235, I’ve looked at your posts, they really mirror how I’m feeling. I’m really hoping I get an increase in levothyroxine, if not I will have no other option but to self medicate, I will fine tune my letter using the information I’ve received on here. I sometimes have to question myself that I’m not just imagining how I’m feeling, x

[Catseyes235 in reply to Georginaschof]

Hi Georginaschof. Sorry to not respond earlier but new knee is occupying my mind at mo’. Glad my posts have helped. The problem is that when you’re hypo you’re not in the best place to do battle with anyone which is why we need advocates. If you’ve got a friend or relative to help you through it would be good! Otherwise keep working on that email and emphasise your symptoms! Wishing you good luck.

[Hidden]

I've also had years of the same issues.

I've written to my GP. It's made no difference.

They only test my TSH. I've been medicating depending on my symptoms and checking against my T4 & T3 and not just the TSH. They won't give me an increase until the TSH goes above 4+, which could take years.

By medicating to my symptoms, it's taken me 4 years to regain my health from 8 years of inadequate hypothyroid mis-management when I did as I was told. I felt ill all of the time and my health and well-being was becoming worse.

Going forward, I'm now going to be arranging my own private hypothyroid testing and sourcing my own medication as I can no longer keep jumping through the hoops and lack of support from my UK primary care team.

I'm sorry, none of this answers your question. I find it appalling that so many of us are subjected to this inadequate management of our condition.

[Georginaschof in reply to Hidden]

Hi summerDark, to be honest I’m not holding out much hope either, I delivered a very long letter on Thursday, the practice manager called me to acknowledge she had received but I’ve not had a response yet.

They want your TSH at 4, that’s shocking, what is it now?

I would write to them again and escalate it further if you don’t get an increase.

[Hidden in reply to Georginaschof]

I gave up with them a couple of years ago and have sourced what I need myself. I told them this before my last TSH test, and said that I wouldn't be spending two months at the level they've prescribed pre my TSH test, which would cause me a lot of health issues.

Therefore, at my last blood test, I was correctly medicated and my TSH came back at very low, around 0.4 (I can't remember exactly, without checking my notes). This is at exactly the very lowest end of the range, so they didn't reduce, but didn't prescribe the amount I'm actually now taking either.

They insist on seeing the TSH increase before increasing my medication. The only options I have is to either self-medicate or suffer their incompetence and spend months being unwell before the next measly increase.

When I write, they don't reply. It just gets "filed" and ignored. I had to send in a complaint when they refused to give me access to my full blood test results and then made it very difficult, and again another complaint four years ago when they ignored my pre-diabetes result and told me it was normal. I'm sick of battling with them over basics. God help anyone who doesn't know how to check everything.

[Tina_Maria in reply to Hidden]

I know it might not be practical, but could you perhaps change medical practices? Given the lack of treatment and care you are currently receiving, it will probably continue to be an uphill struggle with no sign of resolving. Even if you had to travel for a bit, it might be worth considering and perhaps you may encounter a team that is maybe a bit more sympathetic? I know they are rare and it is difficult to know in advance, but even a small improvement might be worth it just for a bit more peace of mind?

[Hidden in reply to Tina_Maria]

No-where around me is any different regarding thyroid issues. My experience in the UK is typical judging by what I see written here. I've learnt how to monitor my condition for myself, so unless somewhere is definitely going to be an improvement I honestly don't see the point of changing medical practices.

[Tina_Maria in reply to Hidden]

Sorry to hear that, although there are some practices that are a bit more open and working with patients.

My practice does not harass me with my suppressed TSH any longer, they even accept my private blood results and when I tell them no changes needed 🤷‍♀️. Or maybe they have just given up and are fed up losing the argument!😂

[Hidden in reply to Tina_Maria]

You've struck gold there then! I think mine have the attitude that if the TSH says no, no it is. One of the doctors at my surgery tried to explain that T4 was the active hormone and T3 the inactive. And went on to say that T3 has to be converted by the body into T4... that's the level of knowledge I'm dealing with. I corrected them of course. I wish mine would give up! 😂

[Tina_Maria in reply to Hidden]

Oh my God! 🙄 Seriously? I think he should think about another career... it is basic level physiology and if he does not comprehend a simple concept like this, he should not treat patients. But then, am I surprised? Nope. Once you get enrolled into medical school, you get through as the drop out rate is about 1.5%, where as in other scientific disciplines, it is nearer 10%. So we are stuck with the dead wood all the way.... and some of that dead wood even gets to be consultants.... ! 🤢

[Hidden in reply to Tina_Maria]

It was a new GP, (woman) getting experience at the practice, so recently trained, which is even more depressing as I can't say they were out of date with their training

There's no hope for me except to monitor and medicate myself. Luckily, I have learnt enough to heal myself and I'm now really well, but had I left it to my primary care team, I'd be in a very poor state.

[Hidden in reply to Georginaschof]

And good luck with your doctor's practice. I think they're all cut from the same cloth these days over thyroid issues... which is depressing. Sorry

[Georginaschof in reply to Hidden]

Thank you, I’ll update when they eventually ring me, the practice manager did say if they haven’t contacted me by tomorrow she would chase it up I have a place in Spain and I can buy levothyroxine over the counter there if need be

[Hidden in reply to Georginaschof]

At least they're willing to call you and discuss it. Mine don't even do that. It will be good to hear your progress. Thank you Yes, many EU countries are far more civilised with regards to OTC Levothyroxine and you know for sure it's what you're getting when it's a genuine pharmacy.