Letter to G.P/ is this ok or......?

[msmono]

Morning - hope everyone's feeling good, better or at least hopeful today. G.P. put levo down from 100 mcg to 75 due to December test results and I feel hypo symptoms again.

If anyone can bear to look over my tedious (long) letter and see if it needs any tweaking I'd very much appreciate any input.

Dear ...........

I am writing to ask for my levothyroxine dose to be increased back from 75mcg to 100 because I’ve experienced a gradual increase of hypothyroid symptoms (‘frozen’ hands and generally feeling cold all the time, brain-fog, unable to walk even the half-mile to work, aching bones, muscle cramps and more) after the dose reduction to 75 mcg on 19/12/19. I agreed to the dose reduction as thyroid-test results showed possible over-replacement but more importantly, for a brief period I had some symptoms (over-heating, heart-racing, anxiety, cough). I also agreed with the G.P. that my dose may have been increased too quickly (at the recommendation of the endocrinologist 08/19) from 50 to 100 mcg however I now feel it needs to go back to this level.

I understand that dose-titration can be tricky and sometimes you have to reduce before slowly increasing again?

The endocrinologist I saw in June 2019 (Dr Mark Spring) said that given my high anti-bodies and multiple, severe symptoms over several years, that my thyroid function is failing and levothyroxine replacement would eventually take over from thyroid function. He also said (if I understood correctly), that whilst my thyroid continues to produce some thyroxin, there would be fluctuation of symptoms and blood test results. I do feel this is the case as there are good days and bad days or weeks symptom-wise.

I also understand that the ideal with symptomatic hypothyroid patients is to get the TSH level down to below 1 or even suppressed with FT4 and FT3 in the upper part of the range, slightly elevated or to wherever the patient has symptom-relief. I think this is true for me. When my FT4 blood test was above normal, I may have briefly experienced exogenous hyperthyroidism but now at 75mcg I feel uncomfortably Hypothyroid.

Generally my health is much better than pre-treatment with reasonable symptom-reduction and less/no time off sick from work. I’ve returned to exercising, become gluten-free and lost a stone in weight so whilst I don’t want to have uncomfortable over-replacement symptoms, nor do I want to slide back to square one where my quality of life was extremely poor. I would therefore like the dose to be put back up to 100 mcg so I can alternate between 75/100 as I have been doing for the past week and reduce this slightly up and down if needed. My awareness of dose and how it’s affecting me day-to-day is improving and I’m very focussed on staying as healthy as possible.

I am happy to discuss this in person or be referred back to an endocrinologist if you think this is needed.

Finally could I possibly have a paper prescription as I need proof for prescribed medication when I travel abroad in March.

Thank you for your time. It is very much appreciated

!

Friday's results (I feel rotten)

Serum TSH level 1.41 mu/L [0.35 - 5.0]

Serum free T4 level 12.3 pmol/L [7.0 - 20.0]

December's results (felt a bit 'over')

Serum TSH level 0.01 mu/L [0.35 - 5.0]

Outside reference range

Serum free T4 level 15.9 pmol/L [7.0 - 20.0]

[msmono]

I'm going to assume this is ok-ish or just too long for anyone to have time to read. I have to go to work and drop in enroute as I'm running low on medication.

[Caroline888 in reply to msmono]

Hi msmono

I think you have written a very well-expressed and persuasive letter! I hope your gp accedes to your request for an increase in levothyroxine. Fingers crossed!

All the best

Caroline

[msmono in reply to Caroline888]

Thank you. It's largely with help from here that I was able to write it!

[Lora7again]

Your letter sounds very good and hopefully your Doctor will accept what you have said. Do you know what your T3 is? or is it never tested just like my surgery.

[msmono in reply to Lora7again]

Thank you. took ages to write! I did get T3 done privately a few times and I don't appear to have a conversion issue as yet. And yes G.P. would never do T3 - they only do T4 because they were requested to do so by the endo.

[Wetsuiter]

Good letter imho

[msmono in reply to Wetsuiter]

Thanks, that's kind of you to say so

[Fruitandnutcase]

Very good letter, good luck with it.

[msmono in reply to Fruitandnutcase]

Thank you

[london81]

good letter! to the point, personalised and polite. and shows you know how to tackle your own health so assuring them you know your body & learning about the disease- after all if we tackle these things we can be our own best advocate. good luck

[msmono in reply to london81]

Gosh-thanks. I must admit I've used letters to avoid G.P. contact and so I've had a bit of practice!

[Rhsana]

Hi, Great letter! Can I just ask and perhaps this is my own brain fog coming into play but how were you outside the ref range at 15.9? when the range was up to 20?

Also, you really need to see what your T3 is doing- its the active hormone and will be most likely the effect of feeling to high or too low. There are private doctors you can see who will get the test done for you through an NHS lab so at only the cost of the consultation. Or there are also places like medichecks/bluehorizon etc.

R xx

[msmono in reply to Rhsana]

Hi, thanks, on a previous test the FT4 was over I should've said. I've had T3 done privately and I don't appear to have a conversion issue. Unfortunately I'm still on 6-week bood-testing/titration reviews at the moment and my budget won't stretch to too many more private tests - think I've blown about £600 on endo and private tests the past 18 months trying to get this sorted - you wouldn't think I'd been paying in to the NHS for 45 years! Anyway after 18 months I think I feel best when my TSH is under 1 and my FT4 and 3 are 75% through the range q'uelle surprise! It's just that now my private endo has handed me back to NHS for prescribing and of course the G.P.s are being difficult with one even saying I didn't need treatment thus disagreeing with the diagnosis of an endocrinologist with 15 years experience! Frustration doesn't come close - at least I have some good days now so I can deal with this rubbish!

[Rhsana in reply to msmono]

Apologies I’ve only just seen this. Yes that is truly frustrating! I have had very similar experiences as have many others. Can I ask why your private endo “handed” you back to NHS - that’s not really how it works if you don’t want it to. Are you anywhere near gatwick? I am happy to PM you the details of the Endo I see. Rxc

[msmono in reply to Rhsana]

Hi, and thank you for your post. Yes I did want my NHS G.P. to take on the prescribing and monitoring as I could only really afford one private endo visit. Im lucky as I know many cant even afford that. If you can DM me to recommend am endo near Gatwick, that would be great. Its always good to have a recommendation. 🙂