Advice please: Hi new member here, I have the... - Thyroid UK

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Advice please

rac88 profile image
10 Replies

Hi new member here, I have the following symptoms - tight/choked up feeling in throat and neck, painful swallowing, aches in legs, feeling cold, puffy eyes, hair loss, tiredness, heavy feeling in eyelids, tinnitus, poor circulation, low stamina and attention span, breathlessness, heavy feeling in legs like they are in blocks of ice.

Taking 75mcg Levothyroxine diagnosed 2011, was happiest on 175mcg Levothyroxine and 25mcg T3 since my previous endo said I have poor conversion.

Thanks

TSH 7.3 mIU/L (0.2 - 4.2)

FREE T4 13.7 pmol/L (12 - 22)

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rac88
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researcherUK profile image
researcherUK

Most symptoms that you have described point towards Hypothyroidism and some could be deficiencies in certain vitamins and minerals which usually go hand in hand with hypothyroidism.

75 mcg of Levo from 175 mcg of Levo + 25 mcg of T3 is a drastic reduction in your dose and you may seriously be undermedicated.

Do you have any blood tests to share?

rac88 profile image
rac88 in reply to researcherUK

Thanks for reply. Thyroid results added, endo requested Free T3 but he said this result is irrelevant. I am hoping when I get the letter through from him that I know what the Free T3 result is.

researcherUK profile image
researcherUK in reply to rac88

You are welcome!

Your blood levels (High TSH level and very low T4) came to confirm that you are undermedicated!

T3 levels are most important and an accurate guide towards your optimal dose.

Previously you were on a combination of T4 & T3 for a reason. Possibly you are not a good converter.

rac88 profile image
rac88 in reply to researcherUK

Hi yes my endo before said I am a poor converter and put me on T3. Current endo has now taken me off.

researcherUK profile image
researcherUK in reply to rac88

Any chance to see your previous endo?

rac88 profile image
rac88 in reply to researcherUK

No she went on maternity leave last year and said she would come back. When I now call the endo department her name has been taken off and replaced with my current endo.

researcherUK profile image
researcherUK in reply to rac88

You may hit a wall with this new endo. But we never know push with a request for a combination T4 +T3 treatment and let's hope for a miracle. Fingers crossed!

rac88 profile image
rac88 in reply to researcherUK

I don't know how to push for a request for Levothyroxine and T3 combination treatment because I spoke to a previous GP about this and she told me by the looks of things I need the T3. Then my new endo told me I didn't need it and took me straight off.

I have printed off some information on the benefits of T3 but no idea who to show this to. Endo is not interested, saying he will only consider adding T3 back in once there is clinical evidence stating it works (improvement of physical symptoms doesn't count as clinical evidence) and will only let me discuss symptoms with him once my TSH is back in normal range.

Will post vitamin and mineral results now.

researcherUK profile image
researcherUK in reply to rac88

Your previous treatment, results, and current treatment all are indicative that you are better on a combination treatment.

Regardless, due to the prices of T3, NHS doctors are rarely prescribing T3.

Self-treatment may be an option for you to consider.

SlowDragon profile image
SlowDragonAdministrator

Email Louise at Thyroid Uk for list of T3 friendly Thyroid specialists

Louise.roberts@thyroiduk.org.uk

Also do the NHS England online consultation saying how much better you were on T3,

engage.england.nhs.uk/consu...

Endos should not chop and change treatment plans - we are left as piggy in bl...y middle

This 2nd endo obviously doesn't have a clue about Hashimoto's

You are now extremely under medicated. You need immediate increase in T4 by 25mcgs and retest in 6-8 weeks

What has the endo got to say? Nothing most likely

We have seen many turn up very recently on here - same story every time - doing well on T4/T3 and then not only is T3 removed but T4 slashed as well

It's criminal and the medics concerned should be hauled before GMC

Withdrawal of T3 almost always leads to dire vitamin levels as we need T3 for good gut function

See my reply this similar case

healthunlocked.com/thyroidu...

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