Just a small rant and slightly off-topic question. - Thyroid UK

Thyroid UK

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Just a small rant and slightly off-topic question.

5 Replies

Hi everyone. I just refilled my T3-liothyronine- and it took quite a bit of looking around to find a pharmacy who had it in stock. Quite a few seem to have it back-ordered and delivery dates are unsure. Scary!

Apparently because of our government shutdown (US) (which is so catastrophic for so many it makes my problem seem miniscule). I'm biting my tongue to avoid making a political comment here!

Many people are not filling prescriptions because of lack of paychecks and there was a lady interviewed on CNN earlier this week who has started rationing her insulin and living with higher blood sugars because she can't afford her insulin copays.

Part of the problem is that drug companies are slowing down production of new pills and using supplies already manufactured.

Some drugs are not affected so far but it seems T3 is. I finally was able to get a 3 month supply (for more money than last months cost) so I'm ok for now. But it's worrisome to think that it might be harder to get as time goes by.

I'm also feeling better but still depressed and have leg pain that my endo feels is diabetic neuropathy. My doctor prescribed Gabapentin for the nerve pain and also said it would help my depression.

I hate taking meds unless they are really necessary but the Gabapentin is helping.

My question is has anyone else had experience or problems with this drug and has it affected anyone's thyroid meds? I'm still in the process of slowly raising my T3 dose that was finally added to my Levo last April.

I don't want to cause problems with my thyroid meds as I'm finally getting the treatment I need to feel good. But the Gaba is helping me sleep through the night without waking up from the leg pain.

Interested in hearing others' experience with this drug.

Thanks everyone. irina

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5 Replies
dianewilson1900 profile image
dianewilson1900

What kind of medicine is T3? Is it Levothroxine?

in reply to dianewilson1900

No. T3 (Brand name Cytomel, generic name liothyronine) is different from Levo. Levothyroxine is T4. For me, like many people on this site were - and still are-treated with T4 (levo) alone all the while needing the addition of T3 as T3 ranges (usually not considered necessary to test by any doctors and care guidelines) are too low. Most doctors believe that testing T4 and TSH is sufficient. But this leaves many of us still with debilitating symptoms. It is an ongoing fight.

This is why many of us still have symptoms and feel terrible. It is often difficult to find a doctor who understands the need for T3 testing and prescribing T3 if needed. This is an ongoing, money-driven battle both in the UK and here (US). And probably in other countries as well.

SlowDragon profile image
SlowDragonAdministrator in reply to dianewilson1900

Can see from your other posts you have PA

Full Thyroid and vitamin testing would be good idea

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

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

shaws profile image
shawsAdministrator in reply to dianewilson1900

Levothyroxine is a replacement thyroid hormone - also called T4 for people who have hypothyroidism or hashimoto's.

T4 is an inactive hormone and has to convert to liothyronine (T3) and it is T3 which is the Active Thyroid Hormone which is needed in the millions of T3 receptor cells - our heart and brain need the most T3.

marigold22 profile image
marigold22

The situation with Liothyronine/T3 in the UK is similar. There has been a shortage of it for at least 6 months, and now with the Brexit problem I am getting anxious that there will be even less around. We really should not be put in this position.

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