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🤷‍♀️

[pennyannie in reply to birkie]

It just seems so crazy - to wait and watch - for what - further health complications and upset for the patient - I'm so sorry - can surgery compound rather than relieve issues and why you find yourself in this limbo land ?

[arTistapple in reply to pennyannie]

This “Watch and Wait” is ideal for doctors. They get to do nothing and it gets you out of the door pronto. What’s not to like from the doctor’s point of view?

As so with ‘subclinical’ hypo! Let’s rather not notice. Let’s not actually notice, then we don’t even have to arrange for a follow up. Job done.

Have they no conscience? Or just plain ignorant? Either way they have no business being doctors in my view.

[SlowDragon Ambassador]

Sounds like vitamin D tablets from GP are affecting you

You need to check with parathyroid specialist wether you should even be taking any vitamin D with possible parathyroid disease

If you can take vitamin D supplements, then try a smaller daily dose of vitamin D in olive oil

[birkie in reply to SlowDragon]

I actually won't take the vitamin D prescribed by the GP because its always that brilliant blue , red or yellow stuff..🤮

I've been buying my own , I've tried so many over the years spend a fortune on vitamin D all gave me gastric issues and inevitably raised my calcium even further 😡..

I just feel even more unwell when I'm on them, this time I purchased nuavit, drops it says 2 drops per day, gastric wise they seemed ok👍.

But my calcium went from 2.36...to 2.51 in the short time I was on them.

The thinking GPS have....and this is perpetrated by endocrinologist [ who know very little about this disease] ..if the parathyroid is over range and the calcium is in range either mid to top end is to give loading doses of vitamin D, in the hope it lowers the parathyroid hormone.

Unfortunately what they don't understand is...if the patients calcium is already mid to top end given loading dose of vitamin d will just push your calcium up even further 🤦‍♀️ add more unpleasant symptoms.

Firstly vitamin D should only be given if calcium is on the very low side or at the bottom of the range..this is called secondary hyperparathyroidism.

But GPS and most endocrinologist either don't comply with the findings of mid to top end calcium in relation to giving a patient loading doses of vitamin d, they just see the pth as being over range and the calcium as being within range and get the old knee jerk reaction by giving vitamin D.

Mose endocrinologist done even know about normocalcemic hyperparathyroidism...where the pth is out of range and the calcium is mid to top end, it still indicates a parathyroid Adenoma 🤦‍♀️

This as been my fight since first diagnosis in 2004.

I just wish I could get the money to go private, because the surgeon in Oxford would do the 4 gland exploration op😔

The nhs are just butchers in my opinion, leaving patients like myself to suffer, instead of just doing that one op and getting the cure.

I'm due to talk to the parathyroid surgeon soon in Liverpool about my latest scan, my GP is sending my latest blood test which clearly shows my relationship of pth and calcium is out of wack both are to high together, you don't get that with normal functioning parathyroid glands it called the see saw method...if ones upper the other should be below.

But again these endocrinologist know diddly squat about the complexity of parathyroid disease 🙄

Reckon I could pass the exam with flying colours 😂😂😂😂😂

[SlowDragon Ambassador in reply to birkie]

Suggest you don’t take any vitamin D without speaking to parathyroid specialist

[birkie in reply to SlowDragon]

Yeah I'm going to discuss that very thing with the specialist in march👍

[AKatieD]

B12 injections rather than pills too - see B12 wellness group on FB ( run by the B12 society).

[birkie in reply to AKatieD]

Yeah I just couldn't stomach any vitamin d or B12 in tablet form ...but here the kicker...I asked my GP for B12 injections along with vitamin D [ because my vitamin D is deficient]

She told me.." we don't give B12 or vitamin D injections "

End of discussion 😡

[AKatieD]

Yes, lots of us with low b12 obtain or own b12 and inject ourselves