Help for appointment.

[Lucky14]

Hi,

I have my first actual face to face appointment with my Endo on Tuesday next week since lock down. I had written to him a few months back to say I wasn't feeling particularly great, and I pointed out my just in range T4 and said I think I would benefit with an increase in my Levothyroxine and maybe a slight reduction in my T3 as advised on here. He wrote back to say he was only interested in the TSH 😬and is was at the very low end, and he thinks I would be better removing the T3 as I'm not feeling the benefit (which is most untrue). My post today is ammunition or links where I can find proper facts I can present him with on Tuesday so that he doesn't remove my T3 as IT does work for me, its only since T4 levels dropping have I felt not great. He requested a load of bloods and I will provide the relevant ones below. I know my ferritin and B12 need improving, I would like any link I can print explaining the link between these 2 have in Thyroid health, as he has advised me before the 2 are NOT important in Thyroid treatment 🤬I notice he didn't even request T3 bloods, and again that will be because he goes from TSH alone.

THIS POST IS PRIMARLIY FOR FACTS I CAN HIT MY DIABETES SPECIALIST WITH< PLEASE.

Parathyroid Hormone -10.2 (1.6-7.5) comments, abnormal high (he said this not an issue as calcium not high)

Calcium -2.41 (2.20-2.60)

Haemoglobin -166 (115-165) **abnormal (he made no comment)

Haematocrit -0.486 (0.370-0.470) **abnormal) no comment.

Serum Vitamin B12- 301 (200 -883)

Ferritin- 47 (15-200)

TSH- 0.05 (0.35-5.00)

T4- 10.6 (9.0-21.0)

cannot believe he didn't test T3

TIA 🙂

[SlowDragon Administrator]

Unbelievable …no T3

You will need to test yourself

Pity you didn’t do so before consultation

No folate or vitamin D result?

What vitamin supplements are you currently taking

You will need to self supplement to maintain OPTIMAL vitamin levels

What happened about parathyroid levels

You were lucky not to have been extremely unwell for many months stopping both levothyroxine and T3 for 2 weeks before scan.

[Lucky14 in reply to SlowDragon]

Thanks for your reply, I actually only got the results yesterday from Endos secretary, she advised endo had been on holiday and couldn't release them without his permission. Currently I am only on vitamin D as prescribed by another endo who I had been seeing regarding the Parathyroid (she doesn't see me anymore, she's passed me back to my usual one, god help me). I used to take the B12 spray but admit when it last ran out I didn't order more, probably as I was feeling like crap and not thinking it was benefiting me, the iron tablets I have a love hate relationship with as affect my stomach issues. I was really not great when I was told to stop my medication for 2 weeks, didn't feel normal for months, I never wish to repeat that ever again.

My radiation scans were completed Jan, I then called Endos secretary monthly to be told she was off sick and results still on her desk, I was then told she wasn't dealing with me anymore and I had been passed back to my endo, I called his secretary, who advised she knew nothing about it and passed me back to the other one, to cut a long story boring, I finally got a letter from my Endo in July advising, he had seen my results and everything was fine, no issue with Parathyroid as Calcium levels were not high, so good news basically is what he said. That's when I wrote back to him, advising I wasn't impressed with the wait I had and all the chasing I had to do, and I was still considering sending in a complaint to the NHS, his response was all the bloods he booked me in for and I have about 6 pages of them, minus T3, Folate, Vit D etc, and he booked me in for an appointment to discuss withdrawing my T3 (without even testing it) and told me all Thyroid bloods were ok, and nothing to worry about with Parathyroid.

My head is up my arse at the moment and peri menopause not helping in the slightest, but just want to best ammunition I can get before he tries to rail road me next week. Sorry for long post.

[pennyannie]

Hello Lucky :

Well I think you are more unlucky then lucky having an endo who only does on TSH readings !

Your T4 is much too low and we have no T3 and it's a total waste of time for you if you are looking to have a serious conversation about your thyroid health.

I don't know about these 3 results marked as abnormal :

Everywhere I researched when my ferritin was flagged as low suggested ferritin needed to be over 70 for any thyroid hormone replacement to work well. I now aim for 100 :

Serum B12 needs to be at least 50% through the range and think it worth aiming for around 500 ++ :

Can you ask to see a different consultant ?

[Lucky14 in reply to pennyannie]

Thank you, and no, I was told I was lucky that he agreed to see me in the 1st place, cos you know there's nothing wrong with me, you couldn't honestly make this up ☹️

[pennyannie in reply to Lucky14]

I'm so sorry - I'm afraid the stress and anxiety caused by all this would simply exacerbate my health issues further and why I gave up talking to sense to mainstream medical and now self medicate and am much improved staying away.

However likely my issues are not as complicated as others who need support from the NHS -

Ii's not ideal but suits me.

[SlowDragon Administrator]

Parathyroid Hormone -10.2 (1.6-7.5) comments, abnormal high (he said this not an issue as calcium not high)

Suggest you read up as much as possible about parathyroid

parathyroid.com/parathyroid...

You need vitamin D, calcium and parathyroid levels tested together

Download the app too

calciumpro.com

[Lucky14 in reply to SlowDragon]

Thanks, doing this right now.

[Hidden in reply to SlowDragon]

Oh no. What appalling ignorance on the part of an endocrinologist 😤

[Hedgeree]

Hi Lucky,

Sorry but from what you've said on your post I would be running in the opposite direction (if I had the energy!)

They appear to be neither a thyroid nor parathyroid specialist; I'm saying this as I'm currently being checked for parathyroid issues with high PTH and normal calcium. So if possible I would see someone else.

Best wishes.

[Lucky14 in reply to Hedgeree]

Thanks, let me know how you get on. And I think I'm going to need to get tougher.

[SlowDragon Administrator in reply to Lucky14]

Definitely

Likely to take several months for ferritin to recover from stopping levothyroxine and T3

when were most recent TSH, Ft4 and Ft3 tested together

What were results

How much T3 are you taking and how much levothyroxine

[Lucky14 in reply to SlowDragon]

I haven't got previous T3 readings as he not provided them, my concern now is he hasn't bothered testing them since his initial decision to give me T3. I am currently on 100 Levo and 2 x 20 T3 daily. Before he added the T3 I was on 200 Levo. I will be asking him on Tuesday. I think I posted my last results on here, but they were the doctors ones and they don't test T3 as we all know.

[SlowDragon Administrator in reply to Lucky14]

Good grief

How long since you started on this

How do you split your T3?

What time doses

You need to test yourself 6-8 weeks after any dose change or brand change in levothyroxine or T3

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Day before test split T3 into 3 doses with last dose Approx 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Suggest you discuss slowly reducing T3 to 30mcg and increasing levothyroxine to 125mcg daily

Increasing levothyroxine and after 5-6 days start reducing T3 by 5mcg

Wait 6-8 weeks then get tested

Assuming T3 high …..reduce T3 again by further 5mcg

If Ft4 still too low consider further increase in levothyroxine

Going from 200mcg levothyroxine to 100mcg levothyroxine plus 40mcg was ludicrous

“Bull in China shop” is expression comes to mind

Starting T3 ……usual protocol is Reducing levothyroxine by 25mcg and adding 2 x 5mcg retest TSH, Ft4 and Ft3 6-8 weeks later

When was vitamin D last tested

How much vitamin D are you taking

[Lucky14 in reply to SlowDragon]

Hi, I got private Medi Checks bloods last year which I posted on here. I always get tested first thing in morning and leave the appropriate time between bloods and meds etc, think the Vit D is 1000 and I have been on that since Oct last year. I take 100 levo and 20 lio first thing and then 20 in evening. If he not interested in testing T3 again I will do another private test and get results and post them on here. I downloaded the Calcium Pro app and according to that I'm flagging at the higher end of likely for having hyperparathyroidism, so I will be taking that up with him again. Thank you

[SlowDragon Administrator in reply to Lucky14]

So here’s those results from year ago

healthunlocked.com/thyroidu....

Ft4 too low

Ft3 too high

Dose levothyroxine needed increasing and slow T3 reduction

ESSENTIAL to test folate, ferritin and B12 at least annually

Vitamin D twice year

Vitamin D dose at 1000iu very unlikely high enough dose

B12 far too low and folate not optimal

Are you taking daily vitamin B complex

Ferritin still far too low

Next step retest thyroid and vitamin levels

High thyroid antibodies confirms autoimmune thyroid disease

Are you on strictly gluten free and dairy free diet

[tattybogle]

"Ferritin and B12 not important in thyroid treatment"

you could try this from the latest consensus statement for uk endo's on starting T3 combination trials ... it insists they rule out other potential causes of symptoms first ...

fig 1. "Suggested investigations include: FBC, U&E, LFT, Calcium, HbA1c, Ferritin, B12, vitamin D, Transglutaminase Abs. Consider 09:00 h cortisol if weight loss or other clinical suspicion of adrenal insufficiency. Sleep apnoea screening with Epworth score, Depression screening with HADS."

Which is at least an acknowledgement that deficiencies in B12/ Ferritin / Vit D may cause symptoms that could easily be mistaken for thyroid hormone problems.... so it might at least push endo into testing them ( although unless they are low enough to be classed as 'low /deficient' , they will still probably ignore them )

i realise it's not exactly what you are looking for .....

[tattybogle in reply to tattybogle]

forgot to add link for consensus statement , sorry , it's here : onlinelibrary.wiley.com/doi...

post discussing it ( we are not amused)

healthunlocked.com/thyroidu...