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Thyroid UK
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T3 woes, completely losing hope

I guess i'm just shouting into the void here but I feel like I'm just never going to find any treatment for my hypothyroidism.

My GP is utterly useless and says that my (listed below) levels are fine, I think levo is making my symptoms worse, and I've been trying for weeks now to buy T3 but so far I've tried 5 places, all recommended by people who've had success getting T3 from them and 3 sites have ripped me off, 1 posted me some from Bulgaria that never arrived (the shipping was last updated on the 6th of October), and my final hope site required me to use bitcoin and my bank cancelled my card when I tried to buy £79 in bitcoin twice, through two different wallets cos the one the site recommended didn't work.

So now not only am I stuck with my shitty thyroid and symptoms that just get worse and worse and worse, but I have no way to pay for food for the next week or so, and I've lost about £200.

I hate this. Why can't they just give us the medication we need.

I guess I just need some comfort and some advice.

my levels as of 10 days ago:

TSH: 4.1 (0.4-4.0)

FT4: 8.9 (9.0-25.0)

FT3: 0.7 (3.5-7.8)

19 Replies
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You are seriously undermedicated. Free T3 well below range means that you must be extremely tired.

Find another GP who understands about thyroid problems.

Have you had any tests for vitamins and minerals? Basic ones are ferritin, folate, vit B12 and vit D (I think). These need to be well in range so that the thyroid medication works and T4 converts to T3, so that could be one of the reasons your free T3 is so low.

Is there another GP at your surgery?

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Your gp would be better of getting a job in the local supermarket handing out yogurt and biscuit samples...it seems more suited to him seeing as he has NO IDEA how to help his patients get well!!...those results are NOT OK and a HAMSTER would be able to see that !!!He needs removing imediately out of your life and you must see a different gp who will be happy to treat your symptoms by getting your tsh to 1 or below and your t4/t3 in the upper levels as they should be in order to feel well !I'm sorry about the bad luck you have had regards your t3 ..it seems everyone is struggling to get it ,but if your levothyroxine dose was raised you might be find you dont need it.If all else fails Thai ndt is relatively cheap and available right now so maybe you could self medicate with that instead.I'm sorry over your dire situation that you wouldn't even be in if you were correctly medicated .I hope you have a supportive family members who can help you..or search out a local food bank if you are stuck ,sending hugs .

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it's just so absolutely exhausting.

my whole gp surgery is upstairs except the one GP i see - i use a wheelchair - so i cant even change gp or even see the practice nurse, it's absurd

i'll ask for vitamin and mineral tests, thanks, maybe that's why i'm not converting tsh to t3

this whole thing is just crappy and i want my doctor to actually do her damn job

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You could change to a different practice that's wheelchair friendly ..or you can stay home and have all important phone consultations with a decent gp ..the one you have at present isn't even sticking to" you're all good as your bloods are in range" scenario as clearly they aren't even on it !You must act immediately to make change and not let them grind you down .

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I agree totally!

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Right on!!! Most of them DON'T seem to do the job well. They are just practicing.

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Do you have enough Levothyroxine to increase your dose

How much are you currently on? You are seriously under medicated. TSH should be nearer one and FT4 towards top of range around 20. 25mcg dose increase, retesting after 6 weeks. Likely to need moth than one

Highly likely you have low vitamin D, folate, ferritin, B12

Especially if you have Hashimoto's, autoimmune thyroid disease diagnosed by high antibodies

Phone consultation with a different GP at the practice perhaps?

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

Not all are private, some are NHS, but may not be in your area and likely long wait

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I think your surgery is in breach of the DDA if they don't provide a stair and chair lift. If you cannot change practice, I would raise the access issue with your CCG. If they don't do anything about the situation, contact your MP.

As for your treatment, you are one of many who come here every day with frank clinical and biochemical hypothyroidism, who nonetheless are neglected by those who are paid to help them. Your test results are unequivocal. No wonder you feel so ill. Again, report your problem to the CCG, or contact CAB to assist you with a complaint.

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Could you not get an appointment to see a private endocrinologist and get T3 that way? I'm not an expert... I have just been started on levo myself, but thought you could still get it privately?

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It needs very careful selection of the endocrinologist as not all will - just in case you find yourself in the future position of needing T3 to feel better after your surgery.

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It's important to remember that being private rather than NHS does not necessarily mean different-thinking, not least as their training would have been the same. Some private Endos support the use of T3 and/or NDT whilst others do not.

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Hi quinq,

I am so sorry to hear of your predicament. I found this site cuz I am on ataxia uk as well. I have been hypothyroid for many years, but not treated until a year ago. My old doctor is such a dope. Lots of weight gain for no good reason, plus almost all of the other symptoms. I had to beg him for a med. I have been taking Armour Raw Thyroid, which is natural and not synthetic like levo. I don't know if that would make a difference, but thought I would mention it to you. My new doctor didn't even bother to test for T-3, which leads me to believe she is dumber than the old one. My TSH is so low and my liver enzymes are now so high, that it scares me. I also feel like shit and incredibly fatigued all of the time. And the liver is the only organ in the body that does not rejuvenate itself. Great news, huh? She wants to retest after 4 weeks and also test me for Hep C, as in the USA it is fairly common. But I suspect Hashimoto's as it is also common for people with hypothyroid for quite some time, especially untreated as mine was. And, hypothyroid can also affect the liver. Being a doctor, I wonder if she knows that. I am spending the extra money and seeing a thyroid specialist soon, so I hope to have more answers. Please keep in touch if you want to. You are not screaming in vain into a void. I'm right there with you.

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Low TSH is fine if you are taking NDT or anything containing T3. It's to be expected. In that case, it's your free T3 that matters as your Free T4 will usually also be fairly low in range.

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That’s really bad luck. I feel quite fortunate. I searched online for cytomel/ cynomel from Mexico and bought 3x100 bottles of 25mcg for around £100 or just under. The package had duty to pay but it was delivered with out the postman knocking for it. I had no recommendation.

I did the same with buying thyroid-s from Thailand again good service. I took one pill for three days and decided I couldn’t tolerate the fillers as my pains came back in abundance. I now know that I was likely under medicated and so am trying them again. Great value 1000 tablets for around £60 I think.

I bought naltrexone from an online pharmacy so I can make my own low dose naltrexone.

And I bought wp Thyroid from America £55 for 100. Much more costly and I’m running low now so am hoping the thyroid s will work.

Some of us can’t afford a functional doctor. Although I want to be in a position to at some point. I think the dosing methods are unclear on the net. Some of us learn by our mistakes. I should have realised to take heed of correcting my low ferritin before trying other medications.

I’m on 10mg citalopram, half the prescribed amount and I hope in the new year to come off that antidepressant. I tried swapping it for sertraline with awful results. Bad headaches and alterered personality as I fell out with some people I love dearly.

Could anyone recommend a book that helps. Maybe stop the thyroid madness? I’ve got the hashimotos protocol one. Ignore if I’m breaking rules I didn’t mean to hyjack a thread. I really just meant to give you hope that you had been most unfortunate with your shopping and that wasn’t my experience at all.

I did however get into debt using a credit card and was left with an agreement with my husband that I must share with him before I buy any other supplement. Which is fair enough. I was always hopeful that the right pill would sort me out. They can help but diet, I believe is paramount. Finding the right way to eat for your body, minimising stress, practicing yoga or mindfulness or/ and gentle exercise. Good luck x

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How about contacting Lyn Mynott for a list of sympathetic endocrinologists and asking for a referral? Your T3 really needs to be raised!

My old GP was dreadful so I changed and found one who listens. He agreed to refer me to a teaching hospital with good endos and they agreed to try me on T3. It's made a massive difference.

Keep pushing and stay positive!

Bx

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Hi, my reply is somewhat complicated to read, but about 3 days ago, there was a post with the British Thyroid Association's latest stance on the prescribing of T3.

This is their statement -

british-thyroid-association...

This is the post it came from -

healthunlocked.com/thyroidu...

These 2 replies were from that post -

**marigold22

Ok, the hypo patients who have proved they need T3 shouldn't have it withdrawn. But I worry about all the newbies coming along. Will GPs be able to prescribe T3?

Reply Like (6)

Pamela0106

2 days agoPamela0106

The BTA response covers new patients too and that they should be granted a trial with Endocrinologist endorsement but to continue to receive in primary care. **

I have lately been fairly forthright with any GP I've seen about my hypo. I printed out statements like this one by British Thyroid Association, proving that we are entitled to T3. They have to be pushed we have to argue our case. Could you take someone with you to back you up?

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british-thyroid-association...

Sorry, the first link isn't working - hope this one works for you

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thanks everyone!!

I think i may have FINALLY found a reliable source of T3 that i can pay for without my bank card or bitcoin or any of that faff

I really, really appreciate all the kind words and advice and empathy from everyone here, this is such a great community and exactly what i needed

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No friggin' way your levels are 'fine'. What school did your GP go to? My God that's awful. I really feel for you. I have purchased T3 online but from Mexico and did not have any problems. I could actually use my CC. I certainly hope you can find a way to get the help you truly need.

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