Hoping to gain some advice on trialling T3. I'm looking to re-test in a couple of weeks after dropping down to 100mcg Levo, to see if my T3 has increased (100/125mcg increased my T4 but not my T3). However I still feel hypo after 4 weeks on 100mcg, so I'm not too hopeful.
My full previous test results are in this post here:
As many people on here have described, my GP is not sympathetic, and says that technically my last test results (whilst on 100/125 mcg daily) show i'm 'overmedicated'. However my symptoms are those of being hypo still. (Extreme exhaustion - today after a 9 hour sleep, I had to go back to bed after cleaning the bathroom. As an active 30 year old, surely that's not normal?) Reaching the end of my tether and wondering if I actually have CFS/ME as a friend has suggested. I also wonder if I'm going crazy - especially when my GP insists that my results are normal.
I'm currently waiting on genetic test results to see if any faulty DIO2 genes are playing a part in this. I should receive these this week. I had originally thought that I could then use this as evidence to show my GP. However she has since said that T3 on prescription is banned (is this technically true, or can only certain Drs prescribe it?)
What would your next steps be? Would you pay to see a private endocrinologist? There looks to be one about 45 mins from me. Or would you take matters in to your own hands and order T3 online and start a trial?
After 10 years of battling fatigue, I'm willing to do anything.
Any advice is much appreciated. I would also love to hear any success stories after trialling T3.
Many thanks
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setay_k
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T3 on prescription most certainly ISN'T banned - I get it and it's been a life-saver. It's important though to take it low and slow - building up to a full dose over a period of time, as it's powerful.
But it can only be prescribe by an endo - if you email Dionne at Thyroid UK tukadmin@thyroiduk.org she will send you the list of T3-friendly endo's. You don't have to see the person nearest to you - but obviously it needs to be reasonably convenient.
If you see a private endo (a) in my experience they are unlikely to give you an NHS prescription so you're looking at potentially quite a lot of expense and currently difficulties in sourcing and (b) they may not "believe in" T3 anyway ... so you're better off with DIonne's list at least to start with. If you send me a PM I can tell you where I go and more about my T3 experience. Good luck x
You sound like me 3 yrs ago before introducing t3...i would wake at 7am and could easily fall asleep by 9.30 and every medical practician i saw told me i was just a working mum and it was mormal.to feel tired...(I was 32)
There is a major difference between feeling tired and being fatigued and exhusted constantly!!
Please don't give up! 3yrs later I feel great lost the extra 10kgs I used to lug around! Find a good doctor willing To work With you not against you!
Have you got the list of recommended thyroid specialist endocrinologists who will prescribe T3 from Dionne at Thyroid UK
Email her tomorrow if haven’t got it
T3 initial trials can only be via endocrinologist.
There are a few NHS endocrinologist on the list, or you could get trial via private consultation...private prescription enables access to cheap T3 from Germany
assuming goes well and especially if you do have Dio2 gene variation it can help in arguments for NHS to prescribe....does depend on with CCG ...some are much worse than others
But if NHS endocrinologist says you have clinical need for T3 then you should be prescribed
You can search Prescription rates via individual CCG areas in England here
T3 has been nothing short of a miracle for me. I was on Levothyroxine for over a decade and had constant issues. I found out after I was finally prescribed T3 that I’m a poor converter of T4 to T3. I had a DIO2 positive gene test.
I initially got my T3 through a private only Endocrinologist as the NHS was very dismissive. Now I am prescribed T3 by the NHS also after a battle with them. My life has completely turned around. I’m so much more active and fitter as now I have the energy whereas before I was so sluggish and even got to a point where I could barely walk.
Now I run and walk every day. I’ve lost 3st and feel remarkable. All down to the addition of T3.
Hello ...just a word of caution regarding T3...it is not a magic bullet and comes with its own little issues!!! I have been Hypo and Hyper and took levothyroxine for both problems... never done well as Levo gave severe side effects..Exhaustion.fuzziness.fuzzy thinking.wobbly legs etc..tried different brands.different strengths up and down and round the block for 4 years!!!during this time blood tests perfect every time..Endo said if he wanted he wanted to show students perfect readings on levo ...mine was those..however I felt like poooh!!! My lovely doctor gave me a private prescription for T3 in desperation I think!! As Endo did not agree with it
...cost I think...NHS budgets!!!however I digress..tried to get it in UK cost for 56 tabs was £399.£450 and £600 ALL FROM three UK chemists..
I eventually sourced them elsewhere !!PM me for supplier...have been taking them SLOWLY at 5 mic per day now after 5 weeks taking 10 mic a day..I have more energy but still exhausted some days but it is early days..levo syptoms still same...so levo is a big problem with me...not sure whether T3 will make me better able to cope with levo side effects but I cant come off it as I had RAI 18 months ago..so no thyroid at all...but as of today not a lot of change...wait and see what next bloods say...middle June...liquid thyroxine prescribed by Endo but not taking it until we see how T3 works.or not!!@the Jury is out for the moment!!!incidentally vits have to be as high as you can get them...good luck...
Hi, just read your T3 post, please could you let me know the supplier? I'm trying to source T3 for my wife - she's been on Leveothyroxine for years without any real improvement.
Hello Matt01...the best supplier is Germany...Thybon Henning..they have a mail order website but you need a UK doctor private prescription to get it..prescription has to be VERY precise...i.e specifically asking for Thybon...they only do 20mic tablets in 100 tab packs so I order those and split them into baby dose quarters to start with -go slow as they are very powerful -more so than levo!!!have upped mine to 10 mic a day after being on 5 mic per day for 6 weeks.. we wait and see what happens.. did feel a little better on 5 mic but it is such a baby dose results are not immediate anyway..Thybon are listed pharma and totally. reputable company and not back street from Greece or Turkey ..who maybe take your money and disappear!! Cost was 30 Euro..my daughter lives in Munich so got them via a pharmacy and sent them but I know the website does same and charges postage on top...I hope your wife feels better on them..you can but try...big pharma in UK needs a fright to get them to reduce cost to NH S..being ripped off which is why docs dont prescribe them and we have to go to these lengths to make ourselves well. Good luck and hope you are successful and she gets better.
I found when first started on T3, like you I felt better and worse in equal measure....especially around weeks 4-8 after any dose change. Only desperation kept me sticking it out. Much more energy, but struggled with rest of endocrine system rebalancing ......keeping each dose unchanged long enough to start to bring steady improvement
Grit your teeth and don’t alter dose, but wait out full 6-8 weeks minimum before getting FULL Thyroid test
Like McPammy T3 has been absolutely transforming for me.
I am also Heterozygous Dio2 positive....and that was helpful in getting NHS to prescribe
Before starting on addition on T3 (after 24 years poor health on just levothyroxine) I was looking at increasingly poor mobility, unable to shuffle slowly for more than 10-15mins ...now I walk 15,000-20,000 steps per day and lead a completely normal active life...just with addition on 20mcg T3 (divided into 3 small doses per day) alongside levothyroxine
I found it took 18 months to 2 years to tweak dose and especially timing of doses.
Recommend wearing a Fitbit or equivalent....
.A) to track resting heart rate
B) to demonstrate to medics your activity levels
C) to demonstrate that suppressed TSH doesn’t mean over treated
Setay_k, My first piece of advice is to read the forum on a regular basis and learn as much as you can about thyroid, reading blood tests and dosing. At the end of the day it is only yourself who will figure out how to get yourself well. Doctors are only one of the tools to get there, and it's important to be able to double check anything they advise you.
Going down the route of private doctors can be a marathon, most will have the same conventional training as NHS doctors. I've seen three doctors from the ThyroidUK list and I didn't have a great experience with any of them. But I probably wouldn't have been ready to self medicate as I do now without seeing the first two, so sometimes it's part of the journey.
I've just had a quick look back at your old results. You are a pretty clear cut case of needing some T3. Don't let anyone persuade you you've got CFS/ME while you have thyroid numbers like this. The symptoms are pretty much identical, but if you have a thyroid problem then there is an explanation for the fatigue! Every cell and tissue in our bodies needs T3, the active thyroid hormone, without enough everything is running on low energy.
i wouldn't mention it to a Gp until you have tried all the way's to optimise your thyroid replacement.
I did (mention it )....... big mistake.......... unless you want to spend 2 years on a waiting list for some nonexistent 'treatment' and then several more years having counselling to help you learn to deal with your 'condition' .
And then you cant have a sensible conversation with a Gp about T3 because, they say 'but you've had all the treatment we can offer for your 'chronic fatigue'.
10 years down the pan...........really wish i'd come here first ! : )
Sorry for the delayed response. With quite a few of my team being furloughed, work has been too hectic to contemplate next steps!
I had the DIO2 tests back and I have two 'normal' genes, so looks like that's not going to help in my argument for a T3 trial. (I've got to admit, I was almost hoping for this to be the answer!)
With my latest blood tests at the GPs, the GP did say that my cortisol looked low. So I've since been to Addenbrooke's for a Synacthen test. (Which I had a very weird reaction to, I felt like I was about to have a panic attack and burst out in sweats! Anyone else ever had this?!) The nurse did mention I have a low heart rate. Still waiting on the results of this, although it was 2 weeks ago.
I have a Medichecks test ready to take in a week once I've stopped taking the vitamins you're not supposed to before a test. I will post the results here. Essentially my GP is reluctant to refer me to an endo, but once I get the cortisol results back, I will see if I can get a direct appointment with the endo who I was referred to for the test...
Another question - has anyone else suffered with irritability when their T3 is low? I promise I'm a really nice person, but recently I've been very irritable irrationally!
Thank you for your messages above, it means a lot to have advice from those who are in the same boat. x
When you get any new results I recommend putting them in a brand new post. This one is now completely buried and no one will see it. The only reason I knew you'd written something new was because you'd replied to my earlier comment at the same time - which sent me a notification.
I believe that response to the short Synacthen test is the standard one. It stimulates your adrenals so makes the body feel like you're in an extremely stressful situation.
With T3 low almost any symptom can happen, particularly things that are associated with being exhausted, so yes irritability is very common.
My biggest advice is still to read the forum a bit more. Lots of your questions will be answered in replies to other people.
As you have Hashimoto’s are you on strictly gluten free diet?
Or tried it
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thanks SlowDragon, I have been GF for a few years, but I'm now strictly GF (probably as of Jan 2020). (Much as I would love to eat a high gluten diet for a while just so that I could do a test! ... I miss croissants!)
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and it's been a life-saver. It's important though to take it low and slow - building up to a full dose over a period of time, as it's powerful.
NDT
Thyroid function test results after levothyroxine increased to 100mcg. Will I benefit from dose decrease?
Thinking of changing from NDT to Levo. and T3
Does anyone know of any evidence that supports the need to target higher levels of T3 / T4 in treatment of hypothyroid patients?
