update and advice please

[Catch57]

First of all I want to thank the administrators and everyone who contribute to this forum. I look at it several times a week and so continue to learn about our shared condition from all the contributions. I need to take a bit of a sounding about my next steps – I think I know what I want to do, but in the absence of support from the GP, look to this forum for help and advice to inform my thinking and decision.

By way of a bit of an update. Last year I was more than a little frustrated following a telephone appointment with my GP who refused to trial a small increase of levothyroxine because of my symptoms. Following that I did have video call with a GP via my private insurance but that was not terribly helpful either.

My GP did call me back after she had heard from the endocrinologist, who she said she had to consult to change my dose. The result was that the endo did not think, based on the lab results only, I have a thyroid problem and should stop taking medication for three months and test again. I told the GP in no uncertain terms that as my symptoms were so bad on 25mcg daily I was not prepared to entertain that. Luckily, she agreed to continue the current dose. She also ordered a range of blood tests to rule out coeliac, B12 issues etc. I had the blood test in July and the silence from the surgery since has been deafening, despite one or two of the results showing abnormal, but the surgery response was no further action! I have included results of the main tests from last year and this month for info. For info, I was also showing as pre diabetic and my total cholesterol was up, although the ratio between LDL and HDL was about 3.5.

All bloods taken between 8.30 -9 am, no meds for 24 hrs and only water to drink before blood draw.

As I was so exhausted last summer, I really didn’t have the energy or inclination to write to the GP to complain as I originally intended; I was really in a bad place and just couldn’t cope with it all and I was sleeping so much during the day. My plan B was to try and optimise my vitamins. I was already taking Vit D3 and K2 but increased what I was taking and added Vit C . I tried magnesium, but this sent my bowels into overdrive so stopped the supplement. Additionally, I take glucosamine for my joints and marine collagen for hair and nails mainly.

By Christmas I saw no improvement in my level of energy, but having been abroad, bought some Levothyroxine over the counter in a pharmacy in Spain – 400 25 mcg tables for less than 4 euros. I started to take double the dose every other day in mid-December. My thought at this time was to prove to the GP that a small increase would help my symptoms while remaining 'in range'. This did initially help and, for a short while I really thought I had cracked it, but it didn’t last long. By March I felt I was, more or less, back to square one.

As you will see from my most recent results the increase has not made a great deal of difference, if any, actually I think they are slightly worse in some instances, however, my symptoms are a little more manageable most days, or is it that I am just getting used to them and working around them? The downside is that I need to go to bed, sometimes as early as 8 pm, to make sure I can get the rest I need to recover from the day and make sure I can make it through the next. Not ideal.

I have my ‘annual’ blood test with the surgery scheduled for early June. While I am feeling marginally better during the day, I still think this can be improved upon. I know I am in my mid 60’s which will impact on my energy level. I have amended my exercise routine, and my trainer changed my gym programmes to include more strength and balance-based exercise after I explained how T3 is depleted through strenuous/vigorous exercise.

While my vitamin and iron levels are not yet optimum - still a work in progress - and given my recent results I am considering doubling the dose every day. I would appreciate your thoughts on whether I should take double dose of Levothyroxine every day now or should I wait until after the next NHS blood test? I’m not sure if the time between now and the blood test is long enough to make a difference and I should just bite the bullet.

Thank you.

All results are in date order of March 23, July 23 and May 24. First and last are through medichecks and middle NHS

TSH

2.60, 3.3, 2.11 (0.27-4.4)

FT3

3.85 & 3,6 ( 3.1-6.8) NHS didn’t test this

FT4

16.3, 15.6 (12-22) NHS didn’t test this either

Folate serum

8.84, 12.4, 30.5 ( NHS > 4.0 - medichecks >7)

B12

144, 379ng/L, 125 (medichecks 37.5-188 NHS 180-1000)

Ferritin

29.9, 76.4 (30-332) NHS did not test this

Vit D 72, 97.5 (50-200) NHS did not test this

[catpotter44]

Hi Catch57

A little difficult to read these results, but I think B12 looks low. Also thyrdoid is definitely undermedicated. 25mcg and even 50mcg are low doses and the results seem to reflect that. Between low thyroid and low B12 of course you're exhausted.

So, you were taking 25 mcg and in December, upped it to 37.5mcg per day effectively (25 one day and 50 the next)? Are you still on this dose and has that been since December? If so I'd suggest stay on it as changing now might muddle things. It takes 6-8 weeks for changes in medication to show up on blood tests. Either way it should indicate a need for an increase.

Regarding Magnesium, which type did you try? It might be a matter of finding the right form of the supplement as some are harder on the digestive system than others. A different type you might tolerate better.

Hopefully some more knowledgeable people on here can provide you with more direction.

[Catch57 in reply to catpotter44]

Thanks for your reply Catpotter. I have edited the results to a more readable form, sorry they all looked aligned when I posted them.

Yes, I have been taking 25mg and 50mcg on alternate days. My aim was to demonstrate to the GP that a small increase could possibly be the answer, however, my symptoms remain alert after a short respite when I though I had cracked it, and if anything my FT 4 and FT3 are a little worse.

The problem is that I have been on 25mg since I was diagnosed in December 2021 and despite emphasising my many symptoms the GP refuses to play ball. Sadly I know I am not the only one in that boat.

[greygoose]

I'm pretty sure she doesn't have to consult an endo every time she needs to increase a dose of levo! The endo would pretty soon get fed up with that! I think she's just fobbing you off. But, she has no idea what she's doing, and neither does the endo!

It would seem that 25 mcg is a starter dose for those of your age group - although I would dispute the wisdom of that! - but it is just that: a starter dose, and should be increased by 25 mcg after six weeks. I don't know the NICE guidelines by heart, but I'm pretty sure they do say something along those lines. They also say that it is HER responsibility to use her intelligence about when to increase a dose. She's not doing that. She should be giving you an increase and that's all there is to it.

I'm afraid that is a terrible way to post blood test results. The numbers all run into each other and there's no way of telling what is what. If you can, this is the best way to lay them out:

Date

TSH result (range)

FT4 result (range)

FT3 result (range)

etc. That way we can see at a glance what was what and when.

I tried magnesium, but this sent my bowels into overdrive so stopped the supplement.

So, I take it you were taking magnesium citrate? That is the one that affects the bowels - it's the citrate that does it, not the magnesium. There's plenty of choice when it comes to magnesium, but you must take some because vit D and magnesium work together, and the vit D won't do much for you if it doesn't have sufficient magnesium to work with.

As you your main question: I would appreciate your thoughts on whether I should take double dose of Levothyroxine every day now or should I wait until after the next NHS blood test?

I agree with catpotter44 , wait until after the blood test.

[Catch57 in reply to greygoose]

Thank you for your reply Greygoose. I have edited the post to include the results in a more readable form, hopefully. Sorry, but all the results were aligned before I posted it but realise that other devices may format it differently.

Yes, I totally agree, GP seemed to be afraid of her own shadow. I have been on 25mg since my diagnosis in December 2021 and GP has ignored my symptoms and falls back on the blood test results and refused to increase the dose.

I tried magnesium maleate , took it in the morning - no calcium etc. and I take my Levothyroxine at night so no conflict there either. I may try again, but I am a little reluctant after the last experience.

Thanks to you and Catpotter44 - I will wait until after the next blood test before changing my dose through self medication, as I very much doubt the GP will agree to this. Luckily I have several trips abroad planned so sourcing should not be a problem. Thanks again

[greygoose in reply to Catch57]

You're welcome.