Finally got my bloods back after LTC appointment 🙄

[birkie]

I'll lay out the bloods I've had done since starting on NDT.

Sep 20th 2024.....[on half a grain from July 19th 2024]

TSH...18.3....RANGE...[ 0.30...4.50]

T3....4.3....RANGE..[3.10..6.80]

T4...8.6...RANGE..[ 11.00..22.00]

‐---------------------

November 4th 2024 [ on one grain and a quarter]

TSH....2.65....[ no T3 or T4 were done on this draw]😡

-‐---------------------------------

January 21st 2025 [ back to one grain because of awful symptoms, which I'm now very sure we're parathyroid related as my PTH went overactive]

TSH...3.62

T3......4.2

T4......9.2

-------------------

HbA1c...37....range..20.00...41.00]

Cortisol...446...range..133.00...537.00]

B12...393....range..197.00..771.00]

Serum cholesterol...9.2...range..2.50..6.50]

Serum LDL cholesterol..6.6...range 1.00...4.00]

Magnesium..0.92...range 0.70..1.00]

Phosphate..76...range..30.00..130.00]

Serum ALT...22...range 40.00]

Serum creatinine..102...range...49.00...90.00]

eGFRcreat....51....range...90.00...120.00]

Seems they have done most bloods I asked for👍

The GP knew nothing of my health history and was not aware I was taking NDT🙄 she firstly advised me to increase my levothyroxine 🙄 I then explained I was taking NDT, increasing slowly but because of some awful symptoms I decrease back down to one grain from one and a quarter.

You can guess she blamed the symptoms on the NDT, noting I should discontinue it and go back on T4...I went into a quick rant why T4 and T3 never worked for me, and if she would like to look over my last 4 and a half years of blood tests on both T4 and T3 she would very quickly see my bloods were appalling as was my health.

The NDT has rid me of all gastric issues, and I'm now able to stomach a thyroid medication which in effect is working way better than the synthetic form.

Let's just say she wasn't happy with me remaining on NDT🤷‍♀️...but I again brought up my symptoms as being related to primary hyperparathyroidism not NDT, and for which I have a diagnosis , I asked what my calcium and PTH were...

SEP 12th 2024

PTH....7....RANGE...1.60...6.90]

CALCIUM....2.36...RANGE...2.10..2.60]

VIT D..34..

Started me on loading dose of vitamin D🙄

-------------------------------------

JANUARY 21 2025

PTH...5.4...RANGE ..1.60...6.90]

CALCIUM..2.51...RANGE..2.10...2.60] sure vitamin d as raised my calcium, it always seems to do it]

Both these levels are to high.. in that I mean not over range but both are at the top end , not a good relationship between parathyroid and calcium , I've had several over range bloods and bloods showing over range calcium with high end pth, then over range pth with top to middle range calcium .

Obviously she had no idea what I was telling her in relation to primary hyperparathyroidism 🤦‍♀️

But she asked a key question.

Are you under a endocrinologist?

I said no because I'm afraid I found them very uninformed about this condition, I am however under a parathyroid surgeon in Liverpool who is monitoring me and doing scans etc.

She said she would pop her a Email with my latest blood work.

BTW...no mention of my cholesterol results by GP.. 🤷‍♀️

I'm now back to trying to increase to 1 and a quarter grains 👍

[Buddy195 Administrator]

Well done for standing your ground and advocating for your own health and wellbeing (once more!)

Let’s hope the one and a quarter grains work well for you birkie… keep us updated in how you get on 🤞🦋

[pennyannie]

Hey there Birkie :

Do you take the NDT in 1 go - if so, could you possibly see yourself taking a 2nd dose some time in the afternoon ?

[birkie in reply to pennyannie]

I split it 3 times morning, afternoon, evening..I'm trying to go back to one and a quarter grains again, but my symptoms of primary hyperparathyroidism make me feel awful., I threw up all last week , I think it was because the GP put me on a loading dose of vitamin D, it always effects me🤷‍♀️

[pennyannie in reply to birkie]

Yes - I'm sorry, I decided to look back and have been catching up with you -

This is so difficult as I would imagine you needing around 2 grains to be able to get by -

I dose just once a day at around 2.00 am in the morning at a toilet break and get by on 1+1/2 grains - and even taking anymore later in the day seems to have no affect on me.

I wonder now your stomach issues are resolved - if you could try liquid T4 again - or is that a stupid idea ?

[birkie in reply to pennyannie]

I tried it, both the T4 tables and oral T4 were the worst, I vomited the oral T4 back 🤮 and I honestly gave it a good try, it's the ingredients in the synthetic stuff that's my problem ,it reactivates my colitis something rotten.The NDT hasn't caused any gastric problems and I'm absorbing it better, it's just so hard to distinguish the symptoms of primary hyperparathyroidism and over medicated 🤷‍♀️

[pennyannie in reply to birkie]

Well these results do not show over medication :

Have you tried T3 only - Liothyronine ?

In September '24 on 1/2 grain you had a T3 at 4.30 and at least in the range at 8% -

In January '25 on 1 grain your T3 reduced a fraction to 4.20 ??

I know now I need to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at round 125.

So yes B12 and vitamin D need building and I can't see folate or ferritin.

I'm sorry but I don't know enough and need to read up on this hyperparathyroidism - though I did try and understand it once before but gave up, was this happening at the same time as Graves ?

[birkie in reply to pennyannie]

I was first diagnosed with primary hyperparathyroidism in 2004 but I knew nothing about the condition, my endocrinologist did the watch and wait approach, ive since gone onto develop kidney stones, gallstones, calcification in most joints , calcification in my heart, lost 5 teeth they just crumbled , CKD , ostiopeania in my thigh bones and spine, second diagnosis was 2020 and my endocrinologist again wanted to just watch and wait.

I asked "what are you watching and waiting for"?

I had to go private to get the diagnosis as my endocrinologist said I did have it but after my calcium went back into range on one test she wrote saying I now no longer have primary hyperparathyroidism 😡

That's not how hyperparathyroidism works!!

My private parathyroid surgeon diagnosed me on my bloods and symptoms, but I couldn't afford 6/7 grand for the 4 gland exploration op😔

So I was sent to Liverpool to the nhs parathyroid surgeon, she's good but tied by nhs rules, she's done some scans and I'm waiting on the results, but overactive para gland don't always lite up, your bloods and symptoms are your diagnosis.

I hate going through the para flare ups because I automatically think I'm over medicating because the symptoms are very much similar.

Also primary hyperparathyroidism depleats vitamin D and effects kidney function I've tried taking the vitamin D several times but it elevates my calcium , I've tried B12 several times but the tablets and spray effected my stomach and gastric tract.

So diagnosed with primary hyperparathyroidism in 2004 [ watch and wait]

Diagnosed with graves thyrotoxic [ graves] in 2018 [ full thyroidectomy in 2019]

Re diagnosed with primary hyperparathyroidism in 2020 [ watch and wait again] went private in 2020 with Mr khan in Oxford

Then back to nhs Liverpool where im still waiting to get the op🤷‍♀️