Advice ahead of GP appointment please :) - Thyroid UK

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Advice ahead of GP appointment please :)

hjh88 profile image
6 Replies

Hi all!

This is my first post although I've been following the forum since late last year, not long after my diagnosis as subclinical hypo - such a wealth of information here, it's been invaluable!

Brief history (full breakdown with all test results in my profile) - Health had been failing rapidly throughout 2017, went through several GPs at my local practice before finding a very sympathetic/knowledgeable (for NHS) doctor who tested thyroid and antibodies (positive but currently don't have numbers - will add to profile as and when), identified a partial goitre and prescribed me 50mg Levo.

Having been barely functional for months, I felt super human after a few weeks! Virtually all of my symptoms vanished and I lost over a stone in water weight.

Habits and lifestyle - I take my Levo first thing with a big glass of water. I eat approx. 1-1.5hrs after this and take my contraceptive pill approx. 11-12hrs later to avoid absorption issues as much as poss. Looking to come off this soon. I'm reasonably active - yoga and about 1.5hrs walking a day.

I eat quite well and have almost totally cut out processed foods since diagnosis. Now drinking kefir 3-4 times a week to help with gut health, avoiding sweeteners, no longer calorie restricting whilst my meds aren't optimal. Next change will be moving from teflon to ceramic non-stick pans to help reduce any potential - all advice taken from this forum so thank you!

Generally I feel more well in myself than I have done in years - sharper, more physically capable and generally symptom free aside from hard to shift weight. However, I'm finding that if I take on anything beyond my normal day to day (eg. a recent holiday with lots of walking, a house move which was quite physical) I hit my limit and begin to get symptoms again. Not a patch on before diagnosis but I become tired, sore neck, achey joints, post nasal drip, brain fog.

My most recent testing last week was at 9am, no levo, no food, only water:

TSH - 1.86 mu/L (0.27-4.20)

FT4 - 14.6 pmol/L (12.00-22.00)

Serum ferritin - 56 ug/L (13.00-150.00)

T3 isn't tested and I asked for B12 and folate but haven't had the results - dont' know if they were tested. Previous for these are:

Oct 2017

B12 - 393 ng/L (197.00-771.00)

Serum folate - 3.9 ug/L (3.90-25.00)

I'm looking to privately test (as soon as I can afford!) to check T3, Vit D and get more up to date results for B12/folate in case my request to test doesn't come back. But working with what I have at the moment!

Clearly my medication isn't optimal given my results but I don't think I'm far off since I feel generally quite well. I'm hoping to sit down with my GP this week to discuss an increase in dose so wanting to go in fully armed and ready to make the right points and ask the right questions - she was willing to listen/test and has been willing thus far to go against the NHS guidelines so I'm hopeful that we can have a reasonable discussion.

Can anyone advise of particular things to bring up?

I've emailed Louise Roberts at Thyroid UK to see if I can get a copy of the Dr Toft article I've read about here. Not heard back though - does anyone have a copy they could send please?

Also, any advice on supplementing would be gratefully received. Folate clearly is low, B12 not the best!

Sorry for all the text and questions but thank you in advance! And thanks for all the wonderful advice I've picked up here already :)

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6 Replies
Judithdalston profile image
Judithdalston

Hello hjh88, if you read the forum regularly you will have seen that TSH is better at 1 or under , and your FT4 is low, just over bottom quarter of range....so yes you could do with an increase of 25 mcg levothyroxin. But you would be better to get your full thyroid (TSH, total thyroxin, FT4 and FT3, and even the two autoimmune antibodies again) perhaps after you've been on 75 mcg 6 + weeks. All the Vit/ min results you have posted are low: B12 needs to be 550 +, folate at least halfway thru range, as should ferritin. As you say need Vit D tested. I doubt if your doctor will prescribe any supplements as you are 'in range' even if low- suggest you look at SeasideSusie's previous replies on doses, brands etc of supplements...once you add Vit D, and iron into your supplementing you will have to work out a timetable to take them away from food, other supplements and 'meds'. Worth sounding out what your Gp thinks of private lab tests- many don't like them!

hjh88 profile image
hjh88 in reply toJudithdalston

Hi Judithdalston thanks for your reply!

Thought that was the case with my TSH/FT4 but still learning and getting to grips! Thank you for confirming :)

Very helpful to know where I should be aiming for with my vits etc. I'll definitely have a look out for SeasideSusie's replies too. I've been saving a few posts as I've come across them and think I've seen some of her good info about.

Thanks also for the advice about sounding out my GP on private bloods. I'll tread carefully with that one!

SlowDragon profile image
SlowDragonAdministrator

Post nasal drip can be linked to dairy intolerance, which is pretty common with Hashimoto's.

thyroidpharmacist.com/artic...

Not quite as common as gluten intolerance

Ideally ask GP for coeliac blood test first if thinking of trying strictly gluten free diet. Best to rule coeliac out first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

It is essential to test vitamin D

holtorfmed.com/vitamin-d-au...

NHS postal kit £29 if you can't persuade GP

vitamindtest.org.uk

TSH likely needs to be a bit lower and FT4 definitely higher towards top of range

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

hjh88 profile image
hjh88 in reply toSlowDragon

Hi SlowDragon,

Thanks for your reply!

I did test as you say, my last Levo was 26hrs before, no food only water, and I had blood drawn at about 9am -earliest I could get.

I’ve tested for coeliac (full results in my profile) and was negative for this. I found that when I first started levo my PND totally disappeared. It only returns now with a range of other symptoms if I get a proper low after more physical activity. I’ll give those links a thorough going over - definitely open to testing gluten/dairy free if it will help further.

Thanks for the tip about vit D testing too. Didn’t know the NHS had a kit so I’ll give that a look.

Some really good resources there so thank you for those!

SlowDragon profile image
SlowDragonAdministrator in reply tohjh88

So you probably want to ask GP for 25mcg dose increase in Levothyroxine

They will only be looking at TSH so they may be reluctant. You can ask for trial increase if need to push them

Definitely get vitamin D tested by GP or privately

Suggest you try dairy free first as post nasal drip is annoying you

hjh88 profile image
hjh88 in reply toSlowDragon

I’ll definitely ask about a trial, thank you. Probably a good way of pitching it as a compromise!

If they’re not keen on testing vit D I’ll definitely get it done privately along with T3 etc. as well.

And dairy free first it is!

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