Letter from hospital: What's your thoughts? I got... - Thyroid UK

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Letter from hospital

Pinebunny
Pinebunny

What's your thoughts?

I got taken off natural thyroid for a month before blood tests. I've seen an endo who seemed very knowledgeable and was increasing my levothyroxin at 50mcg at a time. Last time I saw a different endo who has written to say I need to reduce my meds. I felt before this that it needed to go up again. Results on the letter are TSH 0.02, free T4 16.6 Free T3 5.7? Any comments?

10 Replies
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SlowDragon
SlowDragonAdministrator

Can you add the ranges

Plus most recent vitamin D, folate, ferritin and B12 test results and ranges

Plus do you have Hashimoto's? Also called autoimmune thyroid disease, diagnosed by high thyroid antibodies. Ever had thyroid antibodies tested ?

Can see you previously were on NDT and struggling on just Levothyroxine

Have you had DIO2 gene test? If not you might find that helps in argument for getting T3

thyroiduk.org.uk/tuk/testin...

Are you gluten or dairy intolerant?

Pinebunny
Pinebunny in reply to SlowDragon

There were no ranges on the letter. My vit d was deficient and I've been on high dose which was reduced to a maintenance dose. She said it was slightly low and asked me to double my dose. I've no other information. The only information about my condition I've got on here. Doctors don't explain anything!

SlowDragon
SlowDragonAdministrator in reply to Pinebunny

You are legally entitled to printed copies of your blood test results and ranges

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Do you have Hashimoto's?

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, or on NDT make sure to take last dose 12 hours prior to test

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

I would be extremely sceptical of any thyroid specialist who took you off all thyroid medication, even for 2-3 days, let alone 5 weeks

Your vitamin levels are likely very depleted as result and can take months to recover

shaws
shawsAdministrator

I have no idea why a doctor would tell a patient to take no thyroid hormones for one whole month - there's no need to do this at all, I believe - and I'm not medically qualified but the thought of me missing one whole day doesn't bear thinking about.

This doctor is reducing your medication because your TSH is very low - so it goes against what the doctor who has written the following statement says - Oh! and he is an expert on hormones in general. We must realise that the 'modern-day' endocrinologist seems to only look at the TSH result and pronounce the patients' dose:-

Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician instead give you T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcg) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, you can demand that your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have hypothyroid symptoms, and no hyperthyroid symptoms, demand that your physician to increase the dose to see if your symptoms will improve,even if the TSH becomes low or suppressed. .................................and TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels.

hormonerestoration.com/

I think this is the reason many self-medicate and not be forced to do continual adjustments according to the TSH result.

Pinebunny
Pinebunny in reply to shaws

Well I can tell you that I was not happy to lose my meds and become extremely ill. Then it's taking me months to get my dose right. I lost 3 week's pay and really wasn't fit for work for some time.

I've a complaint with the Ombudsman because I first made an informal complaint and although they apologise I got a letter saying that they asked me to have a blood test after two weeks but I didn't go for 5. That made my blood boil

shaws
shawsAdministrator in reply to Pinebunny

They really have no idea when wakening up every day, wondering and hoping you are going to feel well or very, very unwell and how you will cope.

Excuses, excuses, excuses. They are very convinced that levothyroxine fixes everything and we are hypochondriacs until they themselves develop a problem then the boot will be on the other foot.

Tell them that if they were in your shoes they also couldn't get a blood test as they'd be unable to have the energy to step outside the house, never mind get to a surgery.

If it’s standard ranges all looks about right to me? Did you take your medication on the day of testing?

No, I waited until after the test.

Ranges?

They didn't give me any

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