hashimotos/parathyroid: The reason I ask the... - Thyroid UK

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hashimotos/parathyroid

Jemjet profile image
12 Replies

The reason I ask the below question yesterday is because I have hypercalceimia and I don’t know what Vit supplements I can take without making it worse . I feel worse now than ever and my life is dismal so poorly all time just existing and frightened .

hi all can anyone tell me the difference between pth and pthrl blood test I have been to see a professor of endocrinology and he says I need a parathyroid removing due to my hypercalcemia I still feel absolutely like I am dying and so nauseous I have also been diagnosed with reactive hyperglycaemia am still on 50 micrograms of Levo but no effect as yet . My nhs endo still hopeless and the professor at Oxford as written to gp , nhs endo and another professor he knows , to tell them what he thinks of all my results as my nhs endo won’t prescribe Levo . I forgot to ask what the difference with the 2 above test the results where:

Serum parathyroid hormone:

5.0 pmol/L

Normal range:

2.0 to 9.3

Plasma parathyroid hormone related peptide level:

6.5 pmol/L

Normal range: <1.5

Not had any more test since last ones I posted but am due .

I just feel so poorly all time and feel so so unwell . 🤗🥰

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Jemjet
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12 Replies
SlowDragon profile image
SlowDragonAdministrator

What are vitamin D and calcium results

Were they tested at same time as PTH

What vitamin supplements are you taking

Are you taking any vitamin D

50mcg levothyroxine is only the standard starter dose

You will need several increases in dose levothyroxine over coming months

Thyroid levels should be retested 6-8 weeks after each increase in levothyroxine

Jemjet profile image
Jemjet in reply to SlowDragon

Hi Slowdragon Vit d was 74.9 mol 20th feb the adjusted calcium goes up and down 2.67 mmol feb 2nd pth was feb 2nd pthrl was 19th feb . Started Levo on 3 rd April by private thyroid specialist . Stopped all vits coz don’t know which affect the hypocalcaemia feel crap when I eat with the hyperglycaemia am so confused and unwell

SlowDragon profile image
SlowDragonAdministrator in reply to Jemjet

See how things settle once you get on to higher dose levothyroxine

When on low starting dose this frequently makes symptoms worse

Levothyroxine doesn’t top up failing thyroid, it replaces it, so it’s important to get on higher dose as soon as tolerated

Approximately how much do you weigh in kilo

Guidelines on eventual daily dose levothyroxine is approx 1.6mcg per kilo of your weight per day

Jemjet profile image
Jemjet in reply to SlowDragon

Hi I weigh 49.7kg seem to have lost some was 52kg but my natural weight is 46kg . This is terrifying me as so unwell I started the Levo 3rd of April but since have been worse not even a little better how long before putting it up do I need to wait ? Thanks for help xx

SlowDragon profile image
SlowDragonAdministrator in reply to Jemjet

Which brand of levothyroxine are you taking

Teva brand of levothyroxine upsets lots of people

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Bloods should be retested 6-8 weeks after each increase

Book early morning test, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

50kg x 1.6mcg Levo = 80mcg

So as you are petite you are likely to find once you get increased to 75mcg daily that should be quite close to final dose

Might need fine tuning after that

Jemjet profile image
Jemjet in reply to SlowDragon

I am on these I take 1in morning and 1 before bed

This is brand
SlowDragon profile image
SlowDragonAdministrator in reply to Jemjet

Wockhardt generally very well tolerated

Hashimoto’s

Have you had coeliac blood test done yet

Or are you already on gluten free diet

Jemjet profile image
Jemjet in reply to SlowDragon

Am gluten free since first advised when joined so good few months xx

Jemjet profile image
Jemjet in reply to SlowDragon

Also I don’t know what vitamins supplements to take coz of the hypercalcaemia Am very confused and the reactive hyperglycaemia doesn’t help , it makes so I don’t know what’s making me so unwell my nhs endo says my pth is 6.5 but it says on patient access my result was 5.00 it’s my other that is 6.5 shows how much she knows and because she will not agree about hashimotos and tpo and is a diabetic specialist not thyroid , I don’t think she knows what she’s doing she got the professors report on 2nd may telling her what he thinks from all my test and med reports and this morning I got letter moving my appointment to end of June , it should be next Tuesday . This report also went to her manager and my gp but have heard nothing . The proffessor in Oxford says I need a thyroid specialist and he gave the name of whom to refer me too and also said which test and scans they need to do as well as the meds I need ,

Am getting nowhere and I thought might go to pals do you think it will help ? Again I feel like a massive burden and hypochondriac ☹️🤔

SlowDragon profile image
SlowDragonAdministrator in reply to Jemjet

Blood sugar control improves as hypothyroidism gets under control as Levo dose is increased

You may need to initially only increase by 12.5mcg after next blood test

Jemjet profile image
Jemjet in reply to SlowDragon

That’s good to know xx it is a thyroid clinic in Bristol that is prescribing as my gp can’t due to the nhs endo saying I don’t have hashimotos. And my tpo is 1 blip she says

Jemjet profile image
Jemjet in reply to SlowDragon

thanks for giving me advice feel so lost ! I suppose it depends on how serious they take the report from the professor

Just have to prey they listen ! 🙏 xx

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