Test result advice & preparation for 1st Endo appt

[StillEverHopeful]

I would appreciate your thoughts on my latest test results taken fasting at 07:40 currently take 100mcg levo. (April's Levo dose was 75/100mcg alt days)

Am posting August & April's results from Medichecks

THYROID STIMULATING HORMONE Aug *0.239 mIU/L (0.27 - 4.20) {April 0.632}

FREE THYROXINE Aug 14.700 pmol/L (12.00 - 22.00) {April 14.7}

FREE T3 Aug 4.96 pmol/L (3.10 - 6.80) {April 4.71}

THYROGLOBULIN ANTIBODY Aug <10 IU/mL (0.00 - 115.00) {April < 10}

THYROID PEROXIDASE ANTIBODIES Aug <9.0 IU/mL (0.00 - 34.00) {April 16}

ACTIVE B12 Aug *210.000 pmol/L ( 25.10 - 165.00) {April 171}

FOLATE (SERUM) Aug 8.32 ug/L ( 2.91 - 50.00 25) {April 5.68}

OH VITAMIN D Aug 79.9 nmol/L (50.00 - 200.00)

{April 68.4}

CRP - HIGH SENSITIVITY Aug 0.98 mg/l (0.00 - 5.00)

{April 0.9}

FERRITIN Aug 80.9 ug/L (13.00 - 150.00) {April

72.8}

Also taking Jarrow's B- Right complex up to 4x a week. stopped taking 5 days prior to test

Still unable to function well enough to work due to fatigue & muscle pains. Have puffy face, neck has fluctuated in size and tenderness these past 4 months, on bad days have brain fog too. Am invited out for a gentle stroll with friends, taking up to 1 hour and am still trying to decide if I can do it. Is it worth the potential cost of poor functioning for a few days.... I'm sure you all know the sort of stuff

Not coping too great with stress, body seems to shut down ( from simple like 'boo' from family member to big like son having his car written off due to driver behind not paying attention)

My GP refused to up the levo due to TSH but got endo referral as had very tender neck

Medichecks say I am at risk of osteoporosis with the TSH being below range....(NHS view I guess)

I have my first Endo appointment in 3 weeks and am feeling concerned I will be just sent away as everything is 'in range' Is there any advice you can give me for this appointment. I just want to do ordinary things again.

I am aware that there is a link between low T3 & heart disease. I believe my dad had undiagnosed hypothyroidism this is why my dad had a stroke (30 yrs ago) at about 57 and heart attack at 59... so this also worries me as I am 55.

Struggling to remain Still Ever Hopeful. Many thanks in advance for your help. x

[Nanaedake]

Has your GP checked calcium levels? If you are female, good calcium rich foods are very important as you near menopause. Have you had any mineral levels checked? Magnesium can aid vitamin D absorption as can boron rich foods such as raisins, prunes, almonds. Has your GP checked liver and kidney function?

Are you taking any medication that might affect levothyroxine absorption as your FT4 is low within the range?

[StillEverHopeful in reply to Nanaedake]

In May2018 a batch of tests were done as they want to say I have CFS & for that the test results needed to have no abnormalities.

I don’t really understand them, but as T3 was just below range I told GP I wasn’t willing to accept CFS as there was room for thyroid improvement... even with below range TSH. was given endo referral when I then repeated that my neck was super sensitive ( improved now but still feels wrong)

I also seem to have consistently just below range MCV 81fL (83-101)

And upper range or just over for RBC 5.48 10*12/L (3.8-4.8) GP nor interested in MCV and as test carried out fasting not bothered by RBC

Serum Calcium level 2.31 mmo/L (no range)

Serum adjusted calcium concentration 2.33mmo/L (2.2-2.6)

Liver function tests

Serum bilirubin level 7 umolL (<20)

Serum total protein level 73 g/L(63-82)

Serum albumin 40 g/l (35-50)

Serum globulin 33 g/L (21-35)

Serum alkaline phosphatase 99uL (38-126)

Serum alanine aminotransferase 36 uL (0-50)

Forgot to say am self supplementing with magnesium citrate400mg (but never tested - take as a co factor to vit D) plus Better you vit D and K and eat quite a bit of natural yoghurt.

Not sure about kidney checks

Serum sodium 140 mmol/L (133-146)

Serum potassium 4.4 mmol/L (3.5-5.3)

Serum urea 5.6 mmol/L (1.7-7.1)

Serum creatinine 59 mmol/L (45-84)

eGFR using creatinine (CKD-EPI) per 1.73 sq metres >90ml/min/1.73m^2

Thanks

[Nanaedake in reply to StillEverHopeful]

Liver and kidneys look fine but I'm not medically qualified, just a fellow thyroidie.

If you are supplementing with vitamin D, your result is still a little low you might not be taking enough, especially as we're at the end of the summer and your results were taken in August which is when your vitamin D is likely to be at its highest if living in the UK. How much are you supplementing?

Calcium level is in range. However, ensure you are eating boron rich foods as well as calcium rich foods as boron helps calcium work effectively in your body and reduces the amount of calcium you lose.

Raisins, prunes, almonds and avocado contain boron, you can find lists on the internet.

Your body maintains tight calcium blood levels but if you're not getting enough in your diet it will rob your bones to maintain enough calcium in your blood and weaken your bones so a calcium dietary deficiency may not show in blood tests.

[StillEverHopeful in reply to Nanaedake]

Thanks Nanaedake.

We have to know our disease well as many doctors seem to know too little.

I sort of thought kidney & liver tests were ok, so great to hear I’m not alone in that view.

I have been slack with the vit D & cofactors with the sun we have had this summer but will now return to it (better you Vit D 3000)

Boron rich foods - what a great excuse to buy avocados more often. I enjoy the others too. Would like more energy to go for a brisk walk as I know that is meant to help with strengthening bones too, so probably even more important I focus on diet.

[Nanaedake in reply to StillEverHopeful]

I cook with avocado oil. It's supposed to be healthy and it's a high heat cooking oil so good for stir fry etc. I don't know whether it retains boron when heated but you can drizzle it on salads.

[SeasideSusie Remembering]

FOLATE (SERUM) Aug 8.32 ug/L ( 2.91 - 50.00 25) {April 5.68} - taking Jarrow's B- Right complex up to 4x a week.

Why not take it daily? Your level is rising extremely slowly. I raised mine from very bottom to very top of range in 2.5 months by taking 1 x Thorne Basic B daily.

OH VITAMIN D Aug 79.9 nmol/L (50.00 - 200.00) {April 68.4}

This could be better. The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L. If not taking a Vit D supplement then with your level the Vit D Society recommends 2500 IU D3 daily to reach 125nmol/L and 4600 IU daily to reach 150nmol/L.

There are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

Your ferritin is pretty good, you can mainain that level by eating liver or liver pate every couple of weeks.

THYROID STIMULATING HORMONE Aug *0.239 mIU/L (0.27 - 4.20) {April 0.632}

FREE THYROXINE Aug 14.700 pmol/L (12.00 - 22.00) {April 14.7}

FREE T3 Aug 4.96 pmol/L (3.10 - 6.80) {April 4.71}

Your FT4 is still very low despite your below range TSH. Dr Toft (leading endocrinologist and past president of the British Thyroid Association) states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

If you would like a copy of that article email Dionne at ThyroidUK:

[e-mail]

[StillEverHopeful in reply to SeasideSusie]

Thanks SeasideSusie!

It encourages me to have you say my T4 is still low despite my TSH. I so hope the Endo at Addenbrookes will agree to address it.

B complex - I got a bit anxious about the high B12 & medichecks saying to stop supplementing, so it was a sort of self imposed compromise..

Vit D - have been a bit lax in supplementing as have got into sun a lot the last 2 months... I have Betteryou vit D and K2 plus Solgar’s magnesium citrate 400mg so will now return to daily use

Ferritin- a while back you suggested eating more liver which i am actually enjoying & making my own liver pate & freezing for when the family protest against liver. I am also taking a prescription iron tablets on alternate days as any more frequently & constipation becomes bad.

I have Prof Tofts article from Dionne & the last I saw GP ignored it... one before who did give me a small increase in levo is now on maternity leave,

Do you know of any clinical studies that I can use on doctors to prove that low TSH doesn’t cause osteoporosis? (I presume it happens when T4 & T3 are too high)

Thanks again

[SeasideSusie Remembering in reply to StillEverHopeful]

I haven't got anything bookmarked about low TSH/osteoporosis. I really need to work on that as it's something that is touched on by my GP as she TSH obsessed and doesn't like my suppressed TSH despite mid to 3/4 through range free Ts.

[Karenk13 in reply to SeasideSusie]

This study might help

academic.oup.com/jcem/artic...

[StillEverHopeful in reply to Karenk13]

Thanks Karenk13, I’ll add it to my file of info..

[Hidden]

I had my thyroid removed three years ago and my surgeon requested that my TSH remained suppressed. I am now 72 years old have no trouble with my heart or bone density.

I do, however, eat a very healthy diet. do weights and yoga at home and walk my dogs a lot.

[StillEverHopeful in reply to Hidden]

Thanks Bunnyjean Now to get the doctors to agree to increase my dose would so I have enough energy to go for a good walk - At was the moment I get post exercise fatigue so am limited.

[Hidden]

I was the same when I took Levo but have improved, keep on trying

[Leothelion]

I’ve similar results to you, only when I went gluten and dairy free, I gained so much more energy, fatigue totally gone and my antibodies also came down to almost in range, I also have B12 injections regularly, I also try to eat clean too, hope this helps..

[StillEverHopeful in reply to Leothelion]

Thanks Leothelion. I’ve just started gluten free, but not dairy....and like you try to eat clean.

My B12 is high it’s folate that is low range

[HLAB35]

I'd have a look at Dr Myhill's website. She mentions thyroid as being one of the many pieces of the jigsaw puzzle that is CFS/Fibro. Australian research has identified a problem with immune response in CFS patients and others are looking at misdiagnoses such as lupus and mast cell disorders.

drmyhill.co.uk/wiki/Nutriti...

It also may be worth checking if you have the MTHFR mutation that makes it hard to absorb folate. Some are actually better on folinic acid than methylfolate. It looks as though there is a problem in that area for you as Seaside Susie has pointed out. You need magnesium and zinc to help with these methylation issues. Are you taking zinc?

[StillEverHopeful in reply to HLAB35]

That’s really helpful. I’ll be looking into it further. My supplements contain folate.

I haven’t been taking zinc.. what sort of dose should I be looking at?

I kind of get muddled about what to supplement & what can be taken together and what needs space between. I make sure I leave 4 hours either side of levo before taking supplements.

Who does the MTHFR test? Would folate problems have been noticed when I was pregnant? although I was supplementing then.

Thanks again

[HLAB35 in reply to StillEverHopeful]

MTHFR problems are due to a genetic issue that makes you bad at making an enzyme that enables you to metabolise folic acid. They wouldn't pick up on that in the NHS.

Zinc 30mgs per day at night time.. Helps adrenals among other things.. It'll (hopefully) help regulate cortisol production, so less at night and more during the day.

I'd certainly be looking at having your adrenals checked as you sound pretty exhausted and poor adrenal function can mess up your uptake of thyroid hormone.

[SlowDragon Administrator]

As SeasideSusie says your folate is still low, so taking a good quality daily vitamin B complex with folate in, not folic acid

Improving vitamin D to around 100nmol

Strictly gluten free diet helps many, many thyroid patients

Consider DIO2 gene test......but you won't get results back before endo appointment...so perhaps leave that until after seeing them .....depending on what they say

Your FT4 and FT3 are both far far too low. You need a dose increase of Levothyroxine or more likely addition of small dose of T3

If they say it's not available on NHS that's absolute b****t, you should be offered a 3-6 month trial through endo prescribing via hospital. If the trial is good, then your GP takes over ongoing care and cost of prescription

It's not your fault as a patient that NHS is being ripped off on cost of T3

Read up as much as possible about the political/CCG issues on T3

Look up your local CCG policy.

Improve Thyroid Treatment campaign on Facebook has lots of useful info

See especially June 20th- motion of regret

theyworkforyou.com/search/?...

[StillEverHopeful in reply to SlowDragon]

Thanks SlowDragon.

Am supplementing vitD (betterYou) magnesium & better you Vit K and with B complex with folate. Been gluten free for a month (minus one day blip)

Am rather anxious the endo will ignore symptoms, only view TSH and I won’t be able to think fast enough or have so many printouts that I can’t find the relevant article.

I think I’m up to speed on the T3 issue... it’s an appalling state of affairs.

Recently heard local CCG has down graded from double red flag so now T3 available via endo, but will double check it.

Should I push for levo increase or for T3 trial?

I’m hoping for proper investigation of neck(scan of some sort?)

Also wonder about asking about my adrenals (never tested)

Bottom line is I want to rejoin the outside world, go for a long ramble picking blackberries for liqueur...

[SlowDragon Administrator in reply to StillEverHopeful]

I think I would push for adding T3 at this stage

You may need to up Levo as you become more active.

Assuming you get prescribed....Just like Levothyroxine, different brands of T3 are not interchangeable. Stick on same one each prescription. Unless lactose intolerant, best to avoid Teva. Morningside Healthcare or Mercury Pharma are the other two options. Personally I prefer Morningside (blister packed and longer use by date) also slightly stronger in my experience

[StillEverHopeful in reply to SlowDragon]

Thank you for giving me confidence to push for T3.

Yes I avoid Teva too - caused lots of itching.

Assuming success I will ask for a “not Teva “ note as I currently have for levo and pray I get Morningside. (GP wouldn’t specify a specific manufacturer & chemist had been good at keeping manufacturer consistent)

I so appreciate this help. Thank you.