Referral letter

[NWA6]

This was my referral letter after my GP became exasperated with me. It is not a true reflection of my history. Yes there have been times when I have been bullish in my insistence that I raise my Levothyroxine levels ( 3 incidents) but there have been 5 times when my TSH has shown hypothyroidism and THEY have recommended the raise in Meds. The letter below outlines a ‘non compliant patient’ which the medical profession hate. When she says that she said I was over treated that’s such a lie!! I went to her and said I fell over treated. That was after being on my 175mcg dose for over a year. March 2017 -175mcg, then in June 2018 I felt Hyper and I wanted to adjust. I was ‘told off’ for discontinuing all meds for 10-14days in June - I really didn’t like the feeling of being Hyper, I personally reduced my med schedule, I then ordered a blood test in Aug, it showed TSH of 0.09 but she didn’t do anything other than TSH so I have no history of what T4 or T3 looked like. Same thing with the Nov test 😩 How can I understand what was going on At that ‘Hyper’ time. First time in 9yrs that I was ever hyper and it came out of the blue but also after a very stressful 6mths of my life - so correlation?

Anyway She’s a liar!! I never asked to ‘increase my T4’ I asked ‘WTF is going on??’ (In a more civilised manner) That’s when she threw her hands in the air and said ‘I do not know what to do with you, I’ll refer you to the endo’

As you know from my other posts, the endo has been useless and I’m at the bottom of the pile because my bloods are normal and he doesn’t know what a DI02 test means 😩

Sorry to all you regulars who probably heard all this ranting before over the years. I’m amazed that you’re all still here. I see the same names giving out advice left and right. You’re all so patient, you’re all so knowledgable 🙌 Thank you 😊

Best thing I ever did was get access to my medical records on line through Patient Access. Now I just trawl through it and I have the time to build up my history to try an correlate all my evidence on me, not some range but actually try and understand where my range is, what my numbers are.

Needless to say I have switched Dr’s and pharmacy. They both tried to collude to frame me for being a ‘non compliant patient’

[MissGrace]

Oh the great god TSH. You mustn’t be treated on your symptoms FFS!

I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4 also, you might find the comments about hashimotos and over-medication useful in your battle to be well.

I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.

Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.(0.03 - ref range 0.5-5)

What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low. Also, if you have been hypothyroid for a long time before being diagnosed and treated that also makes your TSH react in less stable ways and makes it an unreliable measure.

My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important. Ultimately your feeling of ‘wellness’ depends on T3, T4 alone does nothing if it isn’t converted.

The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL, TSH plunges and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc. which are easily tested. Over medication is a physical state with symptoms , not a blood test.

There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! For your doctor - testing your bloody T3 and taking note of a T4 result that is not close to the top of any reference range I’m aware of would be a bloody good start!

He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient.

Do battle - and good luck. Tell your doctor and endo to dose the patient not the blood test. If you were over-medicated, you would know as you did previously. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿‍♀️ 🥛#fightforyourthyroid

[Angel_of_the_North]

It's a DIO2 (three letters) test, so if you said Di02 rather than writing it down, he wouldn't know what you meant. Probably would still have been useless. Have you tried anyone on the TUK list?

[NWA6 in reply to Angel_of_the_North]

Thank you for the reply. I attached the copy of the results from Regenerus in an email to my Endo so would have been correct. When I type on here it’s just a case of fat fingers and brain fog making mistakes 😀 He does know what the test is because I mentioned it at my first consult but he said he doubted that i would be affected because my numbers are all in range. But he said nochalantly that I should send it over anyway when i get the results. Now he has the results he’s saying that he needs a geneticist to interpret the result.

I have had advice from a member of this board and am waiting to talk to a GP this afternoon so that she can refer me.

I can’t stand this process. Why do I need a referral from a GP for something that I self funding!! 😩

[Angel_of_the_North in reply to NWA6]

Stupid, isn't it. I'm so glad I didn't need a GP referral for my private hormone treatment.