Frustrated

[Sweet_cheeks]

Hi, I have been on thyroxine for 14years and changed dr last year and he changed my dose and now my reading are showing I need to up the dose.. I was on 150 for 13yrs then down to 125 since last June.. I am now being told I have not been taking my meds ( I know I have) and I’m being increased to 175. I do not get on with my GP as he has reminded me that he is medical trained with which I told him I’m the one who has live with hypothyroidism and know my body!! I’m hair is falling out, my eczema is back, weight gain, no appetite, muscle spasms, fatigue, sleeping trouble and to top it it affects my INR warfarin!!! Lost all faith in my dr paractice

[SlowDragon Administrator]

Levothyroxine should only ever be increased in 25mcg steps

So you are correct. Bloods should be retested 6-8 weeks after any dose change

So when dose was reduced (probably erroneously) you should have been retested 6-8 weeks later, not left on too low a dose for so long

You may need to increase futher but only step up by 25mcg and then get FULL Thyroid and vitamin testing, either via GP (who sounds a nightmare) or privately

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if been under treated

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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 .

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_...

Do you have your test results from last year when dose was reduced?

And recent test results and ranges too

If so can you add them. If you don't have them suggest you request them.

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.

Always get actual results and ranges on all tests

Frequently medics only test TSH or TSH and FT4, which is completely inadequate. Dose should not be adjusted just on this basis

[Sweet_cheeks in reply to SlowDragon]

Thank you I will contact GP and get result printout. I have learnt so much in a few days from other hypothyroidism sufferers than I have from medics.. I had never heard of Hashimoto before.

[Sweet_cheeks in reply to SlowDragon]

I saw a different dr today and he has put me on 150mcg daily and will retest me every 3months. He couldn’t understand why the other dr reduced me to 125 either.

What are your views on magnesium supplements ? Some say it’s hood for cramp and spasms I get these esp hands, feet and shoulder blades? On s regular basis.

[SlowDragon Administrator in reply to Sweet_cheeks]

Ask the better GP for vitamin D, folate, B12 and ferritin and both TPO and TG thyroid antibodies tested NOW or get test privately

often magnesium is low, especially if vitamin D is also low

Standard magnesium tests rarely show a below range result.

Many on here, do find that magnesium supplements help with cramps and/or restless legs

BUT this may affect warfarin. You would need to research this

There are a variety of different types of magnesium. Everyone has their own favourite

If you have autoimmune thyroid disease (Hashimoto's) then low vitamins are especially common and so is gluten intolerance

Getting coeliac blood test while on high gluten diet. If test is positive you have to stay on gluten rich diet until endoscopy. If test is negative then you can try strictly gluten free diet immediately.

You need to get your previous test results ASAP

[Sweet_cheeks in reply to SlowDragon]

Thank you so much hun I appreciate what you have told me, I have learnt more from your messages than any dr I’ve seen. 👍