Thyroid UK
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Levothyroxine makes no difference

Had Graves’ disease 5 yrs ago had RAI now on levothyroxine 100mcgs told my THS is normal . Now wish I ever had RAI as now my quality of life sucks . Ache all over , weight gain , palpitations , fatigue , hot flushes . My get up and go has gone .

Have read lots on research and about some not feeling any improvement from levothyroxine and may need T3.

Where can I buy this safely online as my GP just thinks I am not odd . Either I buy it for myself or does anyone know a sympathetic Dr or Endronocologist in the south west UK as happy to go private .

Feel desperate and I feel I can only try T3 to see if there is an improvement in how I feel.

How someone can help me on this forum . Regards Annie

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Annie123,

Before you start self medicating you need to know what your TSH, FT4 and FT3 results and ranges are. If you don't have them ask your GP receptionist for a print out of your recent results. You may be undermedicated and need a dose increase. 100mcg isn't a high dose for someone without a thyroid gland.

If your GP only checks TSH you can order TSH, FT4 and FT3 home tests from thyroiduk.org.uk/tuk/testin... I would be a good idea to order a test which includes ferritin, vitamin D, B12 and folate which are commonly low in thyroid patients and causes symptoms similar to hypothyroidism. Medichecks offer #ThyroidThursday discounts.

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Many thanks for taking the time to reply . I always ask for a print out of my bloods cannot locate them at the moment but do know they are within normal range . Ferritin and B 12 normal. The reason I brought down my Levo was due to palpitations , weight gain , hot flushes , unable to sleep and overwhelming fatigue .

Would be happy to get bloods done but once I have the results what do I do with them as my GP only believes in levothyroxine .

What I want to know does anyone know a endocrinologist who knows his speciality and who lives in South West England? Failing that where can I purchase Natural thyroxine ??

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Annie123,

Try and locate your results and post them. 'Normal' range is very broad and most of us need results to be optimal if we are to feel well. You will need advice on transitioning from Levothyroxine to NDT and to do that members will need to know your TSH, FT4 and FT3 results and ranges.

Email louise.roberts@thyroiduk.org for a list of member recommended endocrinologists.

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Many thanks have emailed Louise

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Your symptoms can be due to low vitamin & mineral levels stopping thyroid hormones working

Insomnia linked to low vitamin D

drgominak.com/sleep/vitamin...

Palpitations are often symptom of under medication (as well as over medication

Or low ferritin

Hot flushes, especially at night can be low B12

b12deficiency.info/signs-an...

Before adding T3 (which you likely need) essential to get vitamin levels sorted first.

For full evaluation you need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

If you can't get full thyroid and vitamin testing from GP

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 be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk

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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

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Many thanks for you in depth reply . Take vit D and B12 reg also take a thyroid supplement . Eat a fairly healthy diet try and push myself to swim . Ferritin level within normal range .

Feel so much could be going on and need a specialist who can help . Have emailed for list of endocrinologist .

My GP is supportive and has done all bloods exception T3 . Just need to know where to go from here.

Thank you again

Kind regards Annie

Reply

If you post your vitamin results and ranges

Within range is often not good enough

Perhaps put on a new post so others can see it

Plus what dose supplements you take

Vitamin D - result aiming for around 100nmol

Ferritin at least half way in range

B12 - if supplementing sublingual B12, good idea to also take vitamin B complex

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...

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I know how you're feeling and I sympathise. I had a hemithyroidectomy for cancer and wished I still had the cancer and a thyroid as I felt so unwell for so long...but follow Cutter's advice and you'll begin to unravel your problems and get better. It will take a while to get back on track because everything with thyroid is slow but you will get there. Checking vitamins and adjusting levothyroxine dose until you are on the correct amount and staying on a stable dose are crucial.

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