T3 Advice and THANK YOU

[Piggyoink]

Dear lovely people. I just wanted to share some news which I hope will give you all encouragement. After two years of hell, incompetent GPs, being pushed into taking antidepressants, threatened with being removed from my surgery, not being able to work, getting myself into massive debt through paying for private consultations, tests and nutritionists... and almost giving up... I have now been put on a trial of T3.

I am so grateful for this incredible platform and all of your advice because without it I would not have made it this far, as tenacity without knowledge would have been useless. And, I am going to use my experience to help campaign for change for ALL those who are affected and need T3.

I’m sure this is another step on a long road and it won’t be without issues. I believe my next hurdle will be due to the fight between the NHS department who have asked I be put on the trial, and my surgery as neither will want to foot the bill.

I guess I just want to tell you all to NEVER give up. We have a RIGHT to the appropriate care which should NOT be based on money. Thank you all so much again. And sending you all the most positive thoughts and hope your struggles will ease.

By the way I do have one question- I’m currently taking 3 grains of metavive and feel 80% ok. Even taking 25mcg of thyroxine was making me feel terrible so I’ve just been on the grains for the last couple of weeks. I’m not sure how best to introduce T3 as I am absolutely not taking the advice of my GP so any insights you can give me will be much appreciated. I don’t have any recent blood tests and the last ones would not be representative of where I am now so not quite sure how to handle this.

Sending all the love 🙏🏾💜

[Judithdalston]

Just as a starter....start with 1/8 th of a pill for a few days, then if ok go up to 1/4. Of course your body has had some T3 in the NDT, so it might not be quite so obviously be crying out for it! When I added T3 for first time to levo. I went very very slowly, taking about a month to get to full pill 20-25 mcg dose. Whether you need to reduce your NDT dose is a bit of trail and error, and also depends how well you were converting the T4 part of NDT to FT3; if you do reduce it again do tiny steps. Retest bloods after 6 weeks on one set lot of doses. A diary of bp, pulse, basal temp., how you feel, can be worthwhile if you need to review dosing in future. I am assuming your ferritin, folate, vit D and B12 are optimal in upper part of ranges as best way to start T3. Glad that your perseverance worked...but many of us go down DIY route instead! Good luck.

[Piggyoink in reply to Judithdalston]

Thank you so much! I’m starting in 5mcg and seeing how I go before I start to reduce Metavive and then up the T3 dose. I hope this works. But I am definitely taking up the cause for those who are not so lucky... I’m a writer and journalist so my words need to be used for a good cause ✊🏽💜

[BumbleyM in reply to Piggyoink]

Thank you for persevering, and well done - i am scraping along the bottom of the T3 range...with too much T4, according to my GP, but he does not draw the conclusion that i am not converting T4 to T3.... but will not prescibe T3 as i am in the normal range.... sound familiar....

[Piggyoink in reply to BumbleyM]

The only way that I got anywhere was to shove the genetic results in the face of my GP ( he would t accep them as they were private results in spite of the lab being an approved one in the UK!) Luckiky the NHS endo accepted them however said she was unable to prescribe T3. I told her that the only thing they were offering to me was poisoning me, they had all my blood results for the last 18 months which proved my point scientifically, even if they had dismissed my symptoms. I was trying not to cry but when I said ‘I can’t believe that you’re sending me to a slow painful death and I’m having to beg for my health.’ That kind of broke her because she knew it’s was true. Still, I was shocked to get the trial. And grateful. I know I’m in a very privileged position but I’ve had to fight this at my lowest points for almost 2yrs. I’m hope you continue to fight. And hope you can get the meds that you need 💜🙏🏾💜🙏🏾💜🙏🏾

[BumbleyM in reply to Piggyoink]

You have shown it can be done.... that does give the rest of us hope.

[DippyDame in reply to Piggyoink]

I wouldn't call it a "very privileged position" I would call it the care you should be given!

Care these days seems to be about keeping you alive rather than keeping you well.

Well done for pulling the blinkers off your GP - they are all too aware of the problem but their hands are being tied behind their backs by the "bean counters" and decision makers on high.

Soon few people will opt to train as GPs unless the powers that be face facts and correct the mess they have created. There is already evidence of that happening...

We can dream!

[mourneadventurer]

Well done for getting this far!

With the introduction of T3 and the potential for a speeded up metabolism don’t forget to get the rest of your ducks in a row I.e. remineralise and ensure that your vitamins and amino acids are well supported. Thyroid UK has a supplement list.

[Piggyoink in reply to mourneadventurer]

Thank you so much... super grateful as ever for anyone who takes the time to support eachother 💜🙏🏾

[mourneadventurer in reply to Piggyoink]

You’re welcome I’ve found ReMag, ReMyte and ReAlign(Botanicahealth) to be effective for me. The ReMag in particular goes into the cell where it’s needed and doesn’t affect the gut. The ReMag lotion is great transdermally as a sleep aid and counteracts lower leg and foot muscle cramps. Best Wishes.

[Reggy in reply to mourneadventurer]

Hi 2 1 & allm

[mourneadventurer in reply to Reggy]

[Hidden]

Just make sure to not eat for an hour after taking it. That included coffee and tea. Calcium bonds to it and makes it less effective so follow the instructions so as to not waste your precious T3.

I had gotten out of the habit and was eating and drinking coffee less than 30 minutes after taking my thyroid. My numbers went way low and I was needing a nap everyday for about an hour and a half. I was at the beach and ignored the symptom thinking it was the relaxing beach. NOPE. Within weeks of waiting an hour the symptoms went away and numbers came back into normal range again.

Good luck.

[Flipper22 in reply to Hidden]

My GP advised me to take 50 Levo at night. I hated setting the alarm in the morning..taking my tablet then having to wait before cuppa..I've been taking it about 10 or 11pm for about nine months and it's much better. Anyone borderline...do your research and change diet. Get your gut Flora sorted! I have completely changed my diet and have not budged from 50 Levo for four years. I also refused statins cholesterol went from 8.6 to 5.5 in 7 months. I have to admit...I stopped all sugar (only organic honey) and live on curry made with organic spices and fresh turmeric root (which freezes quite well). I make two weeks worth and freeze it. I've lost two stone in a year and feel great. There's absolutely no getting away from a complete diet change. Organic white rice is fine...something nasty I'm brown rice but can't remember what? After 11 months on porridge and blueberries )or fruit of choice) for breakfast, curry (nice big portion) lunch or afternoon and few crackers and cheese or advacado...I now eat out and what I like once a week. I used to be terribly constipated which is a big red flag for digestive issues but am never ever anymore. I hope this gives some people hope that you can regulate your hypothyroid. My old GP wanted to whack me up to 100 Levo and up statins in one go and when I refused he said I'd die of a stroke. Luckily, my new GP is open to me experimenting and is happy my levels have evened out. I was on statins for two months and never felt so dreadful I'm my life. After the spat with my old GP I changed my diet completely and so far it's worked and I feel great.

[Hidden in reply to Flipper22]

I have been leary about taking it at night because I live with anxiety. Do you find thyroid at night gives you any palpitations? That would make life easier if I could take at night and get started in the morning like a normal person.

Thanks for your input.

[Hidden in reply to Hidden]

PS: I'm in US and we have an online blood testing company: EverlyWell.com. I just did my thyroid (TSH, T3, T4, antibodies) test for my mid-year test as well as "D & inflamation".

I'm hopeful for normal range results. I feel good.

[jgelliss in reply to Hidden]

If your on the right dose T4 it should even help you with better sleep . Many find it very helpful dosing just before going to bed .

verywellhealth.com/best-tim...

[Hidden in reply to jgelliss]

Thanks. I will give it a try.

That will make life easier.

[Flipper22 in reply to Hidden]

Hi BetZH. I don't experience any palpitations at all. I'm on 50 Levo and taking it at night has really helped all that nonsense in the morning. My GP said during his training an endometiogogist suggested he tell his patients it is fine to take at night.

[dtate2016 in reply to Flipper22]

My son is 40 and doesn’t have too many health problems really he is overweight. Short story his doctor put him on statins. He is a computer IT kind of guy brilliant in being able to build them and troubleshoot. Within 30 days on the statins he said his brain literally stopped working. He said mom I can’t think anymore. I think it’s these drugs. He stopped the drugs and his memory came back. Now he’s doing some of the similar things that you’re doing and especially with the Tumerick it works wonderful. He’s also eating fresh vegetables and fermented vegetables!

Congratulations on finding your way back to health! Thanks so much for sharing what works so many of us are finding our way back. It’s so important to share what works.

[Flipper22 in reply to dtate2016]

Also re statins...research niacin (B3) flush kind is best but be very careful. I broke 500ml capsules and used less than a quarter stirred in a little water for three weeks and still had a flush. I came across a quote from President of prestigious cardiology hospital I'm US who said.. All statins strive to meet the gold standard of niacin. ...You can Google that quote and his name should come up. We know the reason...they can't profit from niacin because you can't patent a vitamin. I spent many weeks researching so please do your own research before taking my word for anything.

[Hydejf66 in reply to Flipper22]

What are the measurements for the curry you make and freeze?

[Flipper22 in reply to Hydejf66]

Gosh...loads. My curries are nothing like takeaways! And don't forget...you can't really go wrong however you experiment. Check out 'One pot Chef' on you tube..his Lentil curry. That first recipe kicked me off and gave me the confidence to experiment like mad I also only use ghee (it's easy to make big batch and it keeps for months) and coconut oil to fry first spices and then onion. One tip...cook the onion for ages until very translucent.

(All organic spices from Amazon)

Fry (but don't burn)

4 cloves

Table spoon mustard seeds

4 star aniseed

Half tablespoon cardamom pods

1 half- 2 table spoons fennel seeds

8_10 peppercorns

3-4 cinnamon sticks ( it's important to get CELYON cinnamon as others are not good for liver) I find the organic sticks very expensive so I now add ground later.

Fry for a few minutes.

Then add 8-10 chopped small onions red,white or both. Chopping the onion is the most time consuming but it's the base and thickness for sauce. Cook medium low for ages until translucent (got that tip from Indian chef on YT...be patient)!

Then stir in and cook these spices

2 large tablespoons garam masala

Level table spoon medium hot curry powder

Half tablespoon of both cumin and corriander

Tablespoon chilli powder

Half tablespoon cayenne pepper (I add bit of paprika too)

Two table spoons cinnamon.

Keep small amount of cold water on stand by in case spices stick a bit...you don't want them to burn.

After spices cooked for a bit add

2 tablespoons of chopped garlic and ginger half and half blitzed in blender/chopper thing (if organic ginger just wash don't peel)

3 little finger sized turmeric root with skin on chopped with knife (I use more because it's healthy but it does spoil the taste a bit as it's a bit bitter)

Could add tablespoon of tomato puree if you like.

I then add one packet of organic chicken thighs cut into pieces (more if you like) and 2 red peppers sliced. Cook for few minutes. Then add

6 tins of coconut milk (already opened) I use one or two lighter coconut milk sometimes one at a time or all at once. You can also add coconut cream or perhaps tin of tomatoes (I've never tried with tomatoes)

Add salt to taste.

Simmer for 25 mins or until chicken cooked.

Cool quickly.

Portion into 11-12 mugs...when cool cover with clingfilm and freeze.

I take each portion out the day before. Reheat/Simmer for at least 10-15 mins

I also buy organic baby leaf spinach wash dry and freeze in portions (without blanching)...add to curry 4 or so minutes before Curry's finished.

You can add any extra spice you like at reheat stage to make each day a bit different. Hope you try it and become a convert like me! Good luck. I'm in a hurry and if I've forgotten something I'll add later!

[dtate2016]

Thanks so much for sharing good news and encouragement. We can find good health - and this site does contribute tremendously!

[london81]

great news! have you been alerted to the t3 campaign ? if not check my profile- we need to support the nhs to be able to buy t3 at reasonable price so they can eventually prescribe as routine when needed! good luck with everything yippee

[Piggyoink in reply to london81]

Please let me know how I can help and be a more active member of your campaign x

[london81 in reply to Piggyoink]

oh gosh I wish it was my campaign! it’s on my page but i’m just a supporter as it’s a fantastic way for us all to come together and help the nhs get t3 to us!

[hyp0thyr01d]

This is great news. I have been fighting for T3 trial for over 2 years and despite filling the criteria I am still being fobbed off. I'm pretty much ready to give in after 3 NHS endo referrals who are all in agreement that I'm not converting but all telling me the CCG will not allow them to prescribe it. This had inspired me to continue my fight a bit longer. Thank you.

[Hidden in reply to hyp0thyr01d]

I'm almost sure they ARE allowed to prescribe on a "Named Patient" basis. Anyone know how to access the guidelines on that?

[cjw6343]

Did your doctor mention a cause, and a cure to get things functioning on their own?

[soozsnooz]

If you read Kenneth Blanchard's book - The Functional approach to hypothyroidism - he reckons that the ratio of T4 to T3 should be roughly 98:2, and that many endos (if they actually prescribe T3 in the first place!) give much too high a dose. It's a very interesting book and well worth a read. I was prescribed 20mcg of T3 but, having read this, I'm going to try and do 1/8 if I can manage to cut them small enough, and increase my Thyroxine to 50mcg. Dr Sarah Myhill rates him highly too and she recommends only tiny doses of T3

[Machupa]

Great you have found something that works for you. I really hope your GP surgery will continue to pay for the T3. Keep well. xxx

[Silentsparrow]

Firstly, so happy to hear that you are moving forward in your treatment of this hideous illness Piggyoink.

My integrative doctor prescribes me 5mcg T3 first thing on waking...and a second dose 5mcg T3 at around 3pm.I was prescribed 200mcg of thyroxine and remained on that dose for some years...but with the introduction of T3 my Thyroxine dose has been dropped to 150mcg.

I too am not convinced that the thyroxine dose does anything for me except produce an acceptable TSH reading on paper for my treating doctor...as my invasive symptoms remained virtually unaltered for several years. But once commencing on the small dose of T3, my Brain fog improved greatly, I was able to find motivation to complete minor daily tasks and my aches and pains dissipated somewhat.

My integrative doctor also has me on compounded probiotics and a selection of supplements that I am certain are responsible for the reduction of severe tissue inflammation that I have suffered for some 15 years. It isn't everything...but it is something.

I continue to have my panels done every 6 weeks to ensure my dosage is correct, and even though my treating doctor seems pleased with my results thus far...I still think that more can be done to if not eradicate, then at least improve may awful symptoms.

Keep fighting the good fight, by being your own best health advocate Piggyoink. And I wish you all the very best moving forward.

[DressingGown]

I'm happy for you, Piggyoink. These messages are really important for me and I'm sure many, many others.

I can't offer much advice on this but it is a trial I'm thinking about.

Keep fighting and keep fighting for each other.

Not to get political but if we don't, these rights you speak about will be taken away blow by blow.

[cc120]

This was on another thread and thought it might be useful: Calculating Your Levothyroxine/NDT/T3 Dosage

tiredthyroid.com/blog/2014/...

[BB001]

If you want to campaign for better treatment, join Facebook group ITT. It stands for improve thryoid treatment.