T3 an instant success!: I was diagnosed with... - Thyroid UK

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T3 an instant success!

Suncliff
Suncliff

I was diagnosed with Hashimotos on 1989. Levothyroxin never really solved all my symptoms but I managed. About 10 years ago my health began to deteriorate but my GP and my endocrine consultant seemed to have no solution. I made to feel that I was a time waster. I also have psoriasis and I have adrenal deficiency.

My health got so bad I would go for weeks without leaving the house. Sometimes I was bed bound, pain throughout my body, hair falling out etc.

I set myself a task to ‘research’ my symptoms using my phone. Firstly I stopped eating gluten, this helped my gut slightly but no big change in my overall condition. I now eat gluten in moderation. Then I started self injecting B12 and this helps with my eyesight, noise in ears, pins and needles in feet, etc.

During the time I kept my GP fully informed and I asked to try T3 in combination with T4. Nearly a year ago the consultant directed my GP to prescribe for a six month trial but my GP wouldn’t do it.

I have high cholesterol, kidneys and liver are showing problems, gall stones, diverticula, inflammation in the blood. 18 months ago I had emergency surgery for a batholin cyst, also ignored by my GP until it was as big as an egg.

Last week I got enough strength to demand the T3 prescription and to day I took the first 10mgs dose alongside an adjusted T4 dose.

Wow! I felt alive again! It didn’t last all day and I haven’t been prescribed a second dose. I still have a long way to go to get the dose increased and prolonged beyond the 6 months. My GP is so uninterested he hasn’t requested blood tests for thyroid levels so he has no baseline. I asked for other tests such as foliate etc and he added a kidney function test but no thyroid tests. I didn’t request them because I know how I feel and test results may not reflect my condition.

I can’t change my GP because there is a shortage of GP services in our area.

My message to anyone reading this is to keep going, insist on getting the medication you need and most important don’t doubt yourself.

10 Replies
oldestnewest

Very good of you to share that, Suncliff, and the fact you have had such horrid treatment and still have this wonderful attitude is amazing. Believe me we share your message. Though I think we would tell anyone with your experience to change doctors pronto if they can but I see you couldn't do that. It's difficult when you are so ill to be your own advocate so it may be advisable to have someone with you but it's great you are finally getting your just dues.

T3 has saved many of us so I'm happy you could finally obtain it.

Glad to hear it’s a success. Could you perhaps split your 10mcg dose in half, taking 5mcg with your T4 first thing (then wait an hour before food/drink) and then the other 5mcg three hours after lunch and one hour before any further food/ drink (except water)? It’s a pain not eating / drinking between 2pm and 6pm but having a second dose of T3 helps me tremendously. If you eventually get your prescription upped to 15 mcg of T3 you could take 10mcg on waking with your T4 and the remainder in the afternoon. I’ve tried all sorts of combinations and this one is the best for me- no fatigue at all until bed time.

Suncliff
Suncliff
in reply to Kipsy

Thank you for such clear instructions. That makes a lot of sense. I’m having trouble breaking the tablets. They are tiny and I have been prescribed 14 for 28 days so I can’t waste any. I have a pill splitter but it doesn’t split them equally. Each tablet is 20mgs and my Dr said to take a half each day but he didn’t say how to manage it. The leaflet, which came with the tablets, said to dissolve the tablets in water ... and dispose of any that is unused but my prescription won’t stretch that far.

Nothing is simple! Why can’t they just make a lower dose?

Indeed! I have started with T3 that I have sourced myself so my tablets are 25mcg each. I quarter them with a pill cutter and take 6.25 with my T4 in the morning and 6.25 at 4pm. I use my phone to alert me. I agree with the post above that says not eating or drinking from 2 - 5pm is a pain, especially as I used to eat my lunch around 4pm when the rush of the afternoon had subsided. But it's worth it.

I have gone through a LOT of pill cutters to find a pretty accurate and reliable one. I suggest you buy a few (they don't cost much) use the chemist and Amazon to get a variety. Then buy a box or 2 of generic paracetamol and practice. The paracetamol will be bigger, but you will see how accurate your cutter is before you try on a T3 tablet.

The first day I took it I felt much energised. Not so much since, but more even. It takes time.

Kipsy
Kipsy
in reply to FancyPants54

Suncliff - On no account waste them by following the PIL instructions to dissolve them and discard the unused part...as you say, you haven’t got enough for that anyway.

IMHO, I think that the main thing for you to achieve during this trial is to prove to your GP/ endo that you feel much better and that the 10mcg (which isn’t a big dose) has raised your T3 levels. You really need to get him to agree to an extra 5mcg though, I suspect, for the long term but I’m not medically qualified and only speaking from my own experience and we are all different.

If it were me, I’d be reporting back to my GP along the lines of brain fog and fatigue much improved but still not perfect and I would be timing taking my T3 very carefully before doing a blood test for the GP. The advice on here is always take T4 exactly 24 hours before your blood test and T3 12 hours before. When I had to time the T3 only 8 hours before my blood test (I’d stupidly taken some magnesium supplements without thinking and then had to wait 4 hours to take the T3) I took only 5mcg instead of the planned 10mcg to avoid looking overmedicated. There’s been advice on here that taking T3 8-10 hrs before the blood test is ok but you definitely shouldn’t take it less than 8 hours before testing. It’s sometimes a matter of trial and error.

Your doctor has been very unhelpful by the sounds of it and gave you no proper instructions. You really need 6-8 weeks worth of T3 before testing to see a true picture then a possible dose increase. I do wonder if your dr has agreed reluctantly then deliberately given you a small dose ..my endo put me straight onto 15mcg and reduced my T4 by 25mcg as I was slightly over range re T4.

Suncliff
Suncliff
in reply to Kipsy

Thank you for all that useful advice it makes a lot of sense. I am only a few days in to my six months of T3 so things might change but so far your description of fatigue levels and brain fog improving but could be better, is exactly how I’m feeling.

I will be buying a selection of pill cutters and doing my own experiments. That is such a good idea, why didn’t I think of it?

My GP didn’t order bloods at the start of the 6 months so he has no baseline to work from. I thought about prompting him but decided I might be better off without the results. Previous results have been reported as within normal range although I never actually got the figures. My Dr can order T3 T4 but our lab used to ignore his request and persistently do TSH. I had to argue with about this until they followed the Dr’s instructions.

Once again thank you for the info it means a lot to me.

Kipsy
Kipsy
in reply to Suncliff

You’re very welcome.

Boots make a sharp pill cutter.

Have you considered doing a Thyroid Monitoring fingerprick test from Medichecks yourself? They often have offers on Thursdays...keep checking until they’ve reduced that test by £10. It tests TSH, T4 and T3. It’s very easy- shout if you need any tips.

Are you intending arranging bloods at the GPs before the six months is up? It seems a very long time to be on a dose that could well be too low for you. My endo wanted bloods done after 4 weeks (too short...6 to 8 weeks is much better)

Like you, I felt better very quickly on T3 but I wasn’t 100% right until I split my 15mcg dose as described above. If you need 15mcg, it sounds like you might have to fight for it and blood tests are a helpful way of showing improvement etc.

Suncliff
Suncliff
in reply to Kipsy

My Dr told me to make an appointment to see him in 12 weeks but he hasn’t asked for bloods before the appointment. I think I might get my bloods done privately at 10 weeks, then I can present him with the results if Necessary. I will split my 10mgs over two doses but first I need a better pill splitter. This is a lot to deal with when I ‘m feeling poorly. I just need a Dr to do the thinking and research and give me clear and complete instructions that I can trust!

thyr01d
thyr01d
in reply to Suncliff

Hi Suncliff and well done for getting what you need. I have exactly the same problem with the tiny pills and have found answer the pill cutter from the hospital is better than anything from the chemist. Here's my real solution though.

I did try dissolving and was keeping the unused liquid, with dissolved T3 in it to take as my next dose but realised it wasn't working.

So, I explained to the GP's pharmacy that they were therefore paying for 50% of T3 that was going down the sink. As a result they now supply me with Morningside T3 which is easy enough to split with a cutter.

EbonyEvans
EbonyEvans
in reply to Suncliff

Why don’t know go back to your doctor and show him the instructions and pretend you’ve disagreed the extras as advised in black and white? What brand are you taking?

Have you tried to get another pill cutter - yours might be blunt. There’s loads on the internet and most pharmacies do a few. If you’re steady with your hands a sharp knife or tweezers and a sharp Stanley knife.

Annoying they don’t make 5mcg but you’re in good hands on this site.

Oh and thanks for your positive note to the others suffering. It’s great to hear 💙

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