Results for endo appointment : Just got a print... - Thyroid UK

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Results for endo appointment

SusanAR profile image
10 Replies

Just got a print out from my doctor to take to my endo appointment next month.

I would truly appreciate anyone’s advice on what I should be questioning when I go!

I don’t have a thyroid and currently on 100mg thyroxine. I felt great when my tsh was 0.01 which was 2 years ago but it’s gone up a lot.

These are the only things my doctor would test. She refused to do T3. I have put the ranges in brackets.

Thank you very much.

Calcium = 2.27 (2.2-2.6)

Vitamin B12 = 583 (180-2000)

Serum folate = 6.3 (2.8-20)

Ferritin = 51 (15-200)

GGT = 44 (5-35)

TSH = 4.2 (0.2-4.5)

Free T4 = 12 (9-21)

PTH 9.9 = (1.6-6.9)

Vitamin D = 18 (25-162)

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SusanAR profile image
SusanAR
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10 Replies
shaws profile image
shawsAdministrator

You are on an insufficient dose to have a TSH of 4.2 so I hope the Endo is sympathetic. All of the following are far too low and will cause symptoms. Your present dose is too small.

Others more knowledgeable than me will respond with advice:

Vitamin B12 = 583 (180-2000)

Serum folate = 6.3 (2.8-20)

Ferritin = 51 (15-200)

SusanAR profile image
SusanAR in reply toshaws

Thank you for your help. I had no idea these should be higher.

SlowDragon profile image
SlowDragonAdministrator

Your vitamin levels are far too low, probably as direct result of being under medicated.

Your GP should have been increasing your dose of Levothyroxine

Levothroxine should be increased in 25mcg steps, retested 6-8 weeks after each increase. Dose increased until TSH is around or just under one and FT4 towards top of range and FT3 at least half way in range

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy

rcpe.ac.uk/sites/default/fi...

You will need to improve vitamins first

Your vitamin D is severely deficient. Your GP should have prescribed loading dose of vitamin D

Look up your local CCG guidelines for vitamin D deficiency and how much GP should prescribe

oxfordshireccg.nhs.uk/profe...

Vitamin D needs improving to around 100nmol. Vitamin D mouth spray is good option if GP won't prescribe

Read up about importance of magnesium and vitamin K2 Mk7 when on high dose vitamin D

Eg

sciencedaily.com/releases/2...

B12 and folate are much too low. A daily good quality vitamin B complex with folate in rather than folic acid

If you have symptoms of low B12 see GP for testing for Pernicious Anaemia before starting supplements

b12deficiency.info/signs-an...

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin is also too low. Eating liver or liver pate once a week should help improve. Needs to be a minimum of 70

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. 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

Many people do not get on with Teva brand of Levothyroxine

SusanAR profile image
SusanAR in reply toSlowDragon

Thank you for all that great advice. Can you believe they wanted to reduce my thyroxine and I refused without seeing and endo.

I’ll take lots of notes with me and hope he can help!

shaws profile image
shawsAdministrator in reply toSusanAR

I hope he is sympathetic as many members have been disappointed with the ones they saw.

SlowDragon profile image
SlowDragonAdministrator in reply toSusanAR

Is this endo one from Thyroid UK recommended list?

Email Dionne for list if you don't have it

tukadmin@thyroiduk.org

Many are Diabetes specialists and not thyroid.

SlowDragon profile image
SlowDragonAdministrator

Thinking about these results

Your vitamin D is dire. When was this test done? Have you seen GP since these results?

Suggest you get an urgent appointment with any GP early next week. Your vitamin D needs supplementing at loading dose urgently.

PTH (para Thyroid hormone) is way above range. This is because vitamin D is extremely deficient. Your calcium is also low. These indicate vitamin D has been low for some time

Suggest you down load vitamin D app

vitamin-d-pro.com

It will cost a £2-£3 but you can clearly see you have a problem.

Your GP should have immediately called you in after these results.

See also SeasideSusie detailed vitamin supplements advice on many of her replies to others

SusanAR profile image
SusanAR in reply toSlowDragon

I really appreciate you taking the time to look at and think about my results.

My tests were last Friday. I went yesterday to get the results and the doctor gave me colecalciferol 800 IU capsules, 1 to be taken each day. (Looking at the links you sent this is not nearly enough). She said it would be a start before my endo appointment.

I said to her that I thought my B12 was too low and my TSH too high but she said it was in her ranges and the endo could make the decision on that.

To give her credit, she’s the one who decided on these tests. The last GP claimed to be a thyroid expert, wanted to lower my dose and said that the only thing wrong with me was that I’m unhappy at work (because I commented that I only sleep and work and that’s no life)

Meant to say .... I always take levo just before I go to sleep, always take the same brand (Almus - mercury pharma does nothing for me) and I’m gluten free.

Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply toSusanAR

Suggest you go back see GP and request correct level of vitamin D as per CCG guidelines

As you can see this Should be between 5000-7000iu per day. 800iu is totally inadequate

oxfordshireccg.nhs.uk/profe...

Point out that PTH is raised

Calcium will naturally increase as vitamin D improves. This is why it's recommended to also supplement vitamin K2 Mk7. This helps send the increased calcium to the bones where it should go, rather than fur up arteries.

Yes B12 is too low, if you have symptoms of low B12 then you need further testing before starting supplements

SusanAR profile image
SusanAR in reply toSlowDragon

Thank you very much. I'll definitely go back.

I slept 10 hours Friday night, 8 hours during the day on Saturday and 10 hours last night - I'm still tired today. It's not normal!

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