Any thoughts?

[StillEverHopeful]

Attached are my results for November ‘18 and March ‘19

Endo says my aches/pains not my thyroid and no need to increase my levo (currently 100mcg) under pressure from me she has said I can have an extra 25mcg alternative days. And that I should be referred to rheumatology for fibromyalgia.

Last lot of vitamins & minerals test were close to optimal.

[SlowDragon Administrator]

Sorry your post was missed, this is an extremely busy forum

Optimal vitamins ?

Vitamin D at least around 80nmol

Folate and ferritin at least half way in range

B12 over 500

You will need to retest bloods 6-8 weeks after this minuscule dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

[StillEverHopeful]

Thanks for the reply - you all do a grand job & mine query isn’t urgent.

Yes I do all those things- I can’t remember my results numbers off the top of my head but remember thinking I had achieved optimal rather than in range.

I too don’t get on with Teva (I itch & yellow carded it) was delighted when I changed pharmacies and got MP which really suited, 2 weeks ago was told they couldn’t supply it so had to accept the activis levo.

Endo convinced that TSH of 2.06 is fine!!! Hence the minute increase - she say I was over medicated due to excessive sweating and fast heart rate.... all of which were present before I started on Levo, so on a highway to nowhere in getting that across to her.

Looking over the past three years is each year I am better than I was really the year before and as I get more active my body needs more thyroid hormone to keep up and this will continue to happen until i am fully ‘replete’ ... I really don’t know how to get this across. My peers are all more active than I am, but endo suggests I have to accept this poor energy that prevents me from working...

I am currently waiting for appointments to check out Sleep Apnea (went away with friend whose mum has this & she thought it would be worth asking about)

ENT next month for sensation of being choked / hypersensitive neck which started last April and GP decided I needed to see an endo who has declared its not Thyroid.

Now Endo wants me refered to Rheumatology as the pains in my thighs & across shoulders are to quote “nothing to do with your thyroid” even though they have become worse as TSH risen & FT3 lowered (at least FT3 is in range as last June it was just below range)

I have no idea how to go about accessing my own T4 or NDT to “go it alone”. I see many posts where the supply has been stopped due to sharing with the wrong people ... and I would worry that those that did share details were out to scam me.... or that if I needed hospital stay I would be denied the self medicating.

So I continue to beg the NHS for small increments hoping that in a few more years I will be able to do as much as my peers, while fuming at this litigious society that has hobbled doctors to the point that they will only work within guidelines and dare not step over the boundaries. (Rant over)