when t4 isnt working.. read this

recoveringwitht3.com/blog/m...

a very positive article, and one that gives me hope!

[Heloise]

Many people have mentioned Paul's work and it's people like him who have made it possible for people to help their own condition. I have doubts the medical profession is going to change any time soon. Thank goodness for the people who have researched and come up with solutions we can handle ourselves.

[Pastille]

Thanks for that, I've saved it

[radd]

martine,

Paul Robinson has written a very interesting book called "The CT3M Handbook " in which he explains how he medicates T3 in a way that utilises the adrenal glands natural circadian action.

Medicating T3-only is useful for those who have tried all others meds unsuccessfully and works well for some. However, it will not suit everyone and most will try T4, T4 & T3, NDT or some other combo before medicating T3-only as this comes with its own problems.

Paul is an advocate of self medicating and supplies much good information (and ThyroidUK is mentioned on his website ... ;o))) ...) ..

[Hidden]

Paul also has a group on FB under the same name you can join if you're either already taking T3 alone or thinking of switching to T3 from Levo / any other meds.

[Hidden in reply to Hidden]

i tried to join last nite, i sent a request, but reading the rules, i havent been on fb that long... i also joined fb last nite, lol... bit of a dinosaur, so i may not get accepted as i have no history yet or pics... i want the book for sure... i worry i have too much rt3.. from what i have been reading and studying, it seems if your stressed, which i am, or over medicated on t4 , which i was, then it could b a possible reason for my levo not working? i hate taking it anyway... makes me feel sick, and to be honest, i cant feel any worse than i already do.. its all trial and error... and i am going to trust my symptoms and signs before the tsh result... its crap

[Hidden in reply to Hidden]

The T3 group is a funny one to join as it says in their rules (which you can read before joining) that they won't support anyone on T4 only those taking T3. Also your Facebook profile has to be 'public' (complicated if you've only just joined FB) so that they can look through and see what type of person you are. I didn't hear anything back for a while to say I was accepted, so I contacted Paul Robinson himself and had a chat with him about my situation. He then allowed me to join the group. But there's a lot of detail to look into. They advise you to buy the book (of course). It's very expensive and I am finding it quite hard going to read

Though of course most of us with Hypo have 'brain fog' which makes absorbing what you're reading quite difficult. I find I have to re read pages several times and make notes to make sense of it.

Funny you should mention Reverse T3 as I feel sure this is also my problem. If you do decide to get a private blood test, (this is a very good tip) spend the extra bit of money and get the one which includes Reverse T3. If you want to do Reverse T3 at a later date, it needs to be done with Free T3 and costs nearly the same amount.

Of course the other reason for your T4 possibly not working as I'm sure you know is that T4 needs to be converted to T3 in the cells in the body which should happen naturally, but for many it doesn't and there are usually reasons for that such as the various vitamin and mineral deficiencies. I don't think I convert properly and the trouble is your blood tests can show up as 'normal' (within range) as the T4 is 'pooling' in your blood stream and showing up as within range. GPs aren't trained enough to look further into the situation. Its so frustrating.

I've told GPs in my surgery that I still have Hypo symptoms / concerned about my thyroid, to be told by one that 'no, those symptoms are menopausal' I almost thumped that particular doctor, but calmly pointed out that I was two weeks from my 60th Birthday and had done with menopause 8 years earlier. She then changed tactic and said symptoms were age related! I left her consulting room quickly before i said something I might regret!

[Hidden in reply to Hidden]

Georgina61, you made me chuckle... yes i can imagine how you felt, am sure you already had your menopause? i am 44 and have been tested perimenopausal, so another bloody diversion from what is really going on.

I messaged paul robinson and i got a quick response.. buy my book! .... i already have sttm and have just took delivery of an adrenal saliva test... costing me a bomb... i am not well off at all...

i have read about testing T3 and Rt3 at the same time to work out a ratio? isnt all this the doctors jjob? i am sooo angry at the way i get patronised in my surgery... 'go home and rest, your stressed...oh, and (in a whisper) stay off gooooooogle!'

i have more knowledge in my big toe than the silly receptionist who worked in asda last week kinda thing... i didnt realise you could qualify to be a doctor so quickly!

i am adding supplements slowly to my diet,, my kitchen has become a chemist lol... i am off to my docs again tomorrow... why oh why i waste my time?

have you read my link ? thyroid hormone transport? its lengthy but good... its on my last post i think... taking the print out for my doc to read at leisure... he still wont listen xx

[Hidden in reply to Hidden]

I read bits of the link, but brain switched off now and then so will have to read it again. Yes done with meno by 52, I'm 61 now. Funny thing was I had grossly heavy periods in the two preceeding years, not every month, but when it happened, I called it a Tsunami as thats what it was like, straight through all my clothes (sorry thats too much information as they say)

I went to the doctor to say should it be like this, so they referred me to a gynae consultant. He said he would like to do a 'hysteroscopy' to rule out anything sinister. OK I said. Oh my goodness that was one of the most horrible treatments / tests I have ever had. My husband was in the room with me and at one point, he asked the consultant did he have to continue as I screamed a couple of times.

He did continue and finished the tests and later results showed nothing sinister, but before i left the appointment he said to me it was best not to have any treatment for the heavy cycles 'as your periods will end when you are 51 and a half'.... my husband laughed when we got out of there and said how could that sort of thing be so exact. But weirdly things diminished quickly at 51.5 and I had last cycle at 52.

I thought I was still getting hot flushes later, but subsequently found out that Levo can cause similar type of flushing.

That young doctor who told me it was menopause / age also asked me what symptoms I meant. When I said I was unhappy about my excess weight, she told me to join Slimming World or Weight Watchers and get out and do some exercise....... yeah right, like I haven't tried dieting. Since studying so much more about thyroid over the last 18 months, I can now see quite clearly why the weight won't shift but the GPs don't think outside the box. A couple of years before I asked another GP (female ironically) about my weight and she looked directly into my face and said...... (drum roll) 'well quite clearly you eat too much don't you' ........speechless

[Hidden in reply to Hidden]

Don't forget Martine to take the supplements at a different time to your Levo as many supplements can interfere with the uptake of your Levo if taken at the same time. Apologies if saying something you already knew. In particular iron supplements.

[Hidden in reply to Hidden]

thanks Georgina61.. all advice very welcome.. yes i do, i take my levo at 6am 2 hours before brekki... iron is the one vit i havent used yet.. i am a bit wary in case i over do it? any advice there for me? how much do you take?i take vit c, selenium , biotin, i take them all at diff times to give my bod a chance to absorb properly... and i take evening primrose oil... my hair is horrid, so fine now,, i had thick hair... and b12 i take too....i rattle when i walk hehehe... xx

[Hidden in reply to Hidden]

Currently I'm not taking any supplements, though I have a cupboard full of B12 / D3 / Selenium / Iron / Coenzyme Q10 and two packs of T3 in readiness! I go through phases with supplements where I think yes I must take them and I take a small plastic pot with them in to work each day so that I can take them with or just after lunch. I think perhaps I don't give them a chance as I then think they're doing no good and stop taking them or forget for a while.

Most supplements I would recommend taking from the Solgar or Vega range, they're very pure and most are gluten free, I have Coeliac disease as well so have to check meds are OK.

I went to a private doctor latter part of last year in desperation and spent 100s on consultations, blood test, urine test, saliva test, then he gave me supplements / more supplements, still didn't feel any different. I think he may have been on the verge of trying me on T3 or NDT but I decided to call it a day. Also my husband thought the doctor was trying to string out appointments to make more money. Appointments were at ungodly early hours of the morning in North London (I live in Bedfordshire) so drive-able and meant I could do the appointment and still get to work for 9 in Biggleswade. I struggled a few times and go there late, but he saw me after another appt. In December he suggested a telephone appointment to save me the driving. I agreed but I found the telephone appt very impersonal and he'd put prices up too, so I called it a day after that.

[Hidden in reply to Hidden]

hi again Georgina61.. ooh that doesnt sound good from a private specialist? i am nhs atm and am sooooooooo frustrated with the system..

i have website ready to order my t3... but i need the book too.. all gets so expensive ... crazy really... i dont understand why they dont just do all the t3 rt3 etc tests... i am goin for scans on spleen..camera up the bum tut, erm... u name it... been tested for all sorts.. its as plain as the nose on your face doc... my tabs aint doin their job!

As for vitamins.. yes you need to give them a couple of months i think to really notice results,,, though i think some are quicker than others...i take milk thistle ... its for the rt3 and i think cleanses the liver? i may have to take up a morning spot on 'this morning' soon hahaha..

Have u rread the ct3book? it makes alot of sense to follow our own bodys' natural 24 hour rhythm...x

[Hidden in reply to Hidden]

I have the book which is called 'Recovering with T3' the revised edition, is that the one you mean. I bought it recently and even though I've read through the website for Stop the Thyroid Madness so many times (there's so much of it) I recently bought the book for that too, also revised edition. Thats a terribly expensive book given that nearly half of it is glossary of terms and case studies, but I have half a mind to take both books to my GP surgery with lots of post it notes stuck in the salient pages and ask them to please read both!

I've had 'down the throat' many times (original Coeliac diagnosis and follow ups) and also 'up the bum' as my mother died of bowel cancer 35 years ago. (She probably would have survived it in this day and age but the GP kept saying she had piles! (My mother was a nurse in her former years and knew what she was experiencing wasn't piles!) Her sister also died in later years of bowel cancer, so I'm in a screening programme.

On reflection thinking of my mother's health in later years (she was only 63 when she died during surgery to remove her colon) I do believe that she probably had undiagnosed Coeliac Disease and this can lead to bowel cancer if left untreated for many years. On reflection thinking also of my mother's weight issues and tiredness, I'm quite convinced she probably also had undiagnosed Hypothyroidism!

[Hidden in reply to Hidden]

forgot to ask where are you ordering your T3 from? you may have to message privately for that - or are we doing that already... I've lost track

[Naomi8]

After 18 years on T4,I became more & more unwell physically & mentally.Unfortunately its a real struggle trying to take responsibility for one's health when you are suffering from profound brain fog & the cognitive impairement of depression.It took 2 years of depression,followed by 2 years chronic fatigue plus a relocation before things improved.My new GP liased with the endo(who I have not met)& they prescribed T3.I don't know how I waded through Paul Robinson's 2 books in the state I was in,but I managed to cherry-pick enough info to follow his circadian rhythm method of dosing to help my poor struggling adrenals.I do not use the FB group because I can't"get"the formatting of FB.

After a VERY rocky start with T3,I started to improve when I got rid of all T4 in my system.One year on,I am taking 55mcgs T3 only.I take it in 2 doses,in the night.If I take more,my heart rate goes up & I get hot flashes(I am 66)I am also taking LDN,am GF & I take all the supplements recommended on here in the form recommended for MTHFR.I have to top up my NHS T3 with BYO.I am always expecting my NHS T3 to be axed.

I recently tried T4 again-reducing my T3 & adding in some NDT.I got a return of tachycardia,ectopic beats & morning anxiety.I am ok now its all out of my system.

[Hidden in reply to Naomi8]

that is good to hear.. naomi8... i aim to get off this levo crap myself... i want either NDT or T3...am gonna discuss this when i go to see my endo... its just not working.