Endo conclusion query: Hi I showed the Endo my... - Thyroid UK

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Endo conclusion query

Hi

I showed the Endo my Medichecks results which is my T3 is low in the range at 4, and T4 high in range, and he replies that " the T3 conversion Is adequate as it is in range and proves I do convert

Where Is the evidence please that this isn't a sufficient level please.? ( meaning that the t3 should be in the top third)

He wants me to continue on 100 levo to possibly increase my t3 conversion if I feel my symptoms are a problem.... he reminds he can't prescribe NHS t3, he suggests private Endo s will do

But mainly please where is evidence we need t3 at higher level in the range

Huge thanks

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It's a simple matter of likelihood. If say the FT3 healthy range is 3.8-7.5, then at 4 when healthy you would be in the bottom 5% of individuals. So, if you didn't know your FT3 when healthy, and when on therapy you come in at 4, there is a 95% chance that your proper level would be higher than that. There is a 50% chance your correct FT3 should be higher than 5.6 the midpoint of the range. So a reasonable aim would be 5.6 or higher into the upper part of the range. It's not foolproof but indicative. Add to that how you feel, and if this means FT3 higher up in the range, go for it.

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Thankyou, I kind of get it

....at moment I'm looking for something to present to Endo sensitively, to support my case but in essence probably banging on brick wall (he has underlined he is consultant level and I'm in range, full stop

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I would gently tell him that "just being somewhere in range" isn't sufficient. The range is simply an amalgamation of everybody. You as an individual occupied a small part of that range when healthy not the whole of it. You have to take whatever action is needed to return to that optimum state.

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....I've photo d your reply to phrase in my reply thnx

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I know what you mean. You actually want written evidence from leading studies to present otherwise they will not take any notice. I think there are studies by a Dr. Toft. The administrators here will know more.

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This sounds similar to me my GP and NHS endo both told me that there is no conversion problem. I had the DIO2 test which shoed Heterozygous polymorphism which a lot of people can have without any issue but those of us with Hashimotos would be more likely to covert well. I completely understand that I do convert because my FT3 has usually been in range but it has always been at the very lowest end of that range 3.5 (3.5-6.5) and once or twice it’s been recorded at 3.8/9. And I have always been symptomatic to some degree or another over the last 10yrs. In the beginning increasing my Levo seemed to get most symtoms under control but the last 3 yrs has shown a steady decline and I think that that has something to do with my bodies ability to convert. And I haven’t ever over done it with the Levo ( some suggestion that if you are on too high a dose then this can actually drive down conversion) because my FT4 has sat around 16 (12-22) once or twice I’ve managed to get my FT4 up to 20ish and still my FT3 has never risen in to the 4’s.

It puzzles me that not enough is known yet, for example it is said that T4 is inactive and yet if I took too much Levo I’d feel ‘Hyper’ but without a raise if FT3?? What’s that all about?

So in conclusion a DIO2 test can shown that you if you are still symptomatic with ‘in range’ bloods then maybe the polymorphism is the reason but the Endos, NHS or otherwise don’t really recognise it as they say there’s not enough evidence of it being ‘a thing’ but for me personally it helped me feel sure about my conversion problem.

I’ve been on T3/4 for a couple of months now and it’s brilliant!

Can you go private? There’ll be a long and frustrating fight ahead of you if you decide to pursue the NHS route and that’s not easy when you’re symptomatic

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O thanks. So

Good to hear from you paula (name sake) and understanding -

Ive has gene test which she said ‘is

Negative’. ( had to pay lot of money to hear that report)

MY t3 at 4 too, same range numbers

Levo 17 ish top of range 22

Tsh around 4 has been 4.6

Right now 3.79 but im pushing levo in????

Endo said take 100 levo now

And have done so four days and couldn't get put of bed today - my brain ‘has sunk away somewhere

Do i push on? Do i have to try push through it?

I cant believe at heart the raise if any of t3 will suffice

Please may you private message if links for ndt hoping for least filler type

Id be really grateful

I need life back

Please say how you decided grains to take? Does your t4 go low when you take it?

.......or are you taking synthetic????

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Hey Jeppy. Never mind about the DIO2 test because as I said it’s apparently quite common for lots of people to have a Heterozygous polymorphism and they are perfectly healthy and Docs don’t value it. All my private endo was interested in was that I had a history of low FT3 scores. I started asking for it to be tested in 2014, I must have been becoming more knowledgeable about my thyroid condition but really still didn’t have a understanding of what I was looking for/at. But still I had about 5 full thyroid tests over a 3yr period which definitely showed rubbish FT3 range even though I was up to 175mcg of Levo.

But once I’d pushed it up to 175, I felt good again (some minor nuisance symtoms never went away fully but I was happy at times and never knew I could achieve any better health. I just put up with some symtoms becayse at least I was t on the sofa. Still relatively lazy though - cause that is narrative I told myself all the time ‘I’m just a laid back person aka Lazy 😂)

Anyway. I was fine on 175 for about 3/4mths and then I started feeling agitated and easily triggered, also insomnia and then my periods stopped. So I dropped my Levo back down slowly and I couldn’t find the right balance. I was now either agitated or on the sofa. Something has seriously gone wrong. I became housebound, couldn’t trust myself to drive and couldn’t think of simple words. I had no feelings, emotions were gone.

And I have to agree with you about feeling Levo affects either way within a day or two. I know the ‘science’ is saying no way is that possible because of the 7day life yada, yada, yada but I always felt it much more quickly and why if my T4 is high and I feel Hyper, why is my FT3 not high too? Who knows, rhetorical question really because the answer doesn’t really matter. What does matter is that it happens and the trick for me was to lower my Levo and introduce T3.

I don’t take NDT so cant advise you on that. Mine treatment is 125/150 Levo and 20mcg T3.

With yourself I think make absolutely sure you’re vits and mins are optimal and I’d do either 2 things right now.

1) Drop back to 75 for now because you could cope with it and you have a stressful time imminent with the birth of your grandbaby. That’s stressful enough without feeling extra pumped 😬

2) introduce the extra dose more slowly over the week eg.

75x5 days per week and 100 x 2 dats per weeek.

Wait 7-14 days and then 75x 4 & 100x 3

You take into account your symtoms and you find your happy place. You may or may not get up to 100 everyday.

So if you find a happy place that’s when you need to hold for 6wks on that same dose and THEN. You do a full Thyriod test.

If you find yourself increasing up to 100 that you were prescribed and you can’t tolerate it then I think I’d test and see where you at and then I think you night find that you need to add T3. But you absolutely have to try different doses and you have to have a thorough history in order to make these decisions.

It’s very difficult to say what numbers are good because we all so different. After 6wks off adding 15mcg my FT3 was still only 4.8 (3.5-6.5) but I felt really really good. Someone else might find that is too low for them still. I did add another 5mcg because I still had a couple of symptoms.

I hope some of that makes sense. I’m not terribly clued up on science and statistics to back up what I say like some of these posters can. But what they’ve posted for me to read means that I really could make my own decisions for my own health based on how I feel because no one else can feel that. T3 worked for me and was completely necessary because I had tried various combinations and had a notable history. It would be much better for you if you could avoid T3 - only because it can be tricky to source and if you go private it’s expensive. So try everything first and then come back to ask about T3. 🤗

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M a r v e l l o u s help thanku so so much

It ALL makes sense!!!!!!!

I tried 75 / 100 after first string reaction

Adrenals may be fobbing me again- initially after YEARS of being undiagnosed with many symptoms i coukdnt tolerate over 25 levo until i worked on adrenals and

Vits

So work in progress i can now take 75 ok at least ( two years to reach this)

Yes iv gone agitated and anxious just a few days with extra dose

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So it seems you Do have a history. Yours is that you don’t really get on that well with Levo. I wouldn’t wait too much longer to try T3. You might be one that would do better on T3 alone. I say this because it’s taken you 2 yrs to get up to 75mcg which is not a high dose (which is fine in itself) but maybe your body just doesn’t like Levo 🤷‍♀️

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I haven't much left in the way of opinion as there has been so much info some contrasting , and yes it's been over two years but I saw dr Peatfield who said my adrenals were insufficient and he said my thyroid would be fine when I sorted out adrenals, this is his usual root and I believe for some it is true

So unsure 🤷‍♀️ I hoe and pray I get there ........Soon

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Thanks again, I'm getting a way forward and will have to sweat the bad stuff (some more) my anxiety feels like something bad is going to happens most of,the time. I feel agitated, a bit angry which is a new one.

My lethargy is in this,chair like you, I can't make it to bed sometimes and awaken at 4am in the chair

I have been under a cloud for eight months with a big issue so reminds I need to support adrenals some more, when this has past it will be beneficial

Yes and baby here soon

I just thought earlier I would like My T3 past results but I doubt il get hold of them. I expect it is just Tsh on them

I was told I was borderline ok from 2012, TSH 4.6

Whatever happened to Borderline LOW?

And I put the weight on in 2008! Fell asleep in lay-bys from 2014 and had regular vertigo.......

Il take confidence to dabble now, as before I got quite phobic about taking hormones

I'm so pleased for you well done working this maize (expensive maize)

Also the groin pain has worsened which doesn't help matters so I can't believe this will go even after weight loss and euthyroid so il

Push for op now - Andy Murray and many others have had theirs far younger than I so I won't be fobbed off any more to wait another ten yrs!!!🙈

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Groin pain? 😩 I’ve had that for years! It does ease off when I’m properly medicated but never goes away. It started with my 2nd pregnancy and I’ve had 4 so I’ve really suffered and needed crutches in pregnancy’s, only I couldn’t really use them as I needed to push the buggy. We had 4 babies within 5yrs and so I didn’t do myself any favours but we knew it would get worse with every pregnancy so why wait? We just got all the pregnancy’s over with so we could enjoy having a family 🤗

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Poor you, have you had X-ray. Scan?

Is there wear showing?

Andy Murray had a new one and many younger so why are we waiting

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Andy Murray got a new groin? Or do you mean hip? Mine is my groin. The symphysis pubus. It’s the ligaments that are messed up 😩

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Ooh I don't want to be too personal 🤣 I meant he has a new HIP

My groin pain is because the hip wear is Anteria!! Well tiny wear and they said it wasn't bad enough to operate on

So is,yours ok when not pregnant??? Was it purely hormonal ? Have you had xray

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Keep reading this Paula. Thankyou. I just want to move ahead and STOP being lazy, I was never ever lazy before, I keep putting things off!!!! Jobs are all behind, I manage the very necessary

I used to be ahead thinker and doer

Maybe burnt myself out

Best wishes and thanks for guidance, brain not behaving at the moment 😴😬

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Think problem here is TSH should be much lower than 4. People are different and I am fine with my TSH 0.07 T4 14 and T3 4.80

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Thanks a lot yes I agree

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You have only just increased dose to 100mcg

You won't know yet if this will help

As your TSH was still quite high (3.5) it may well help

Getting FULL Thyroid and vitamin testing after 6-8 weeks on constant dose

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

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thankyou SD

I dont understand the t3 numbers ?sorry. Im at 4 range 3 - 7 ish

I am worse on 100 levo as already cant get out of bed or think straight

Have you heard others say this then it comes good?

In other words do you have to pish through?

Im feeling agitated and impatient

Im also at a loss with different info which can be conflicting 😒

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You've only been on the increased dose for four days. It won't be having any impact at all, yet, it's too soon. You need to wait at least six weeks. :)

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Yes it has had great impact i can assure

Some systems are more sensitive than others

My other daughter called and asked why im so jittery and she doesnt know about it

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OK

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Thnx

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Every increase I had I felt jittery for about first six weeks. Could have got really cross if anybody did not agree with me. That was even on 25mgs but it will pass off. The thing is finding what suits you as too little or too much can also make you feel wiped out. I have settled on 75mgs with two days a week at 100 mgs. It does seem to be how you feel in yourself. Anything is better than how I felt with TSH at 30. It is now 0.07. I felt so I'll with TSH 30 thought I would die. Just remember we are all different. Do not suffer in silence. Ask to be referred to endo if not already and take a day at a time. Tell your family to make allowances and not to expect too much of you at the moment. My mother too had hypothyroid when I was 15 and I really regret not understanding what she was going through until I started all this at 45. Hope this helps.

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It teally does. thankyou good words how have you got tsh right down? I feel wiped out and iv felt snappy!! My tsh inly got up to 6 so yes we all so individual

I relate to all that but i put face on for fam and sense they dont/cant understand

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OkAs long as its not harmful to have too much levo il keep to 100 and take bloods in a month

If no improvement in wellbeing il go to plan b

Thankyou for dr toft reference

Appreciated!!!!

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Six weeks. A month is too soon to make any judgements.

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Il persevere as can see no choice really and now ureassured it can go over range now - il get own bloods done as if doc does them it may cause a corruption ...then can have nhs test if acceotable result

....Was just hoping to stop being between two stools 😒

but this cant be the case it seems, at present anyway

It would be marvellous if levo does serve m

Thanks All

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If I've understood right, and your FT4 is 17 (? - 22), it's probably only mid-range. And increase in levo of 25 mcg is not likely to take it over-range. But, whether or not it will improve your FT3 level, as your endo seems to think, remains to be seen. It will raise it slightly, of course, but whether it will rise high enough to make you well, we don't know. But one thing is clear, increasing levo will not improve conversion. It doesn't work that way.

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Endo indicates yes

Confused gg as tuk admin saying take it anyway??🙈

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Well, I didn't say not to take it, so why are you confused?

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"Increasing levo will not improve conversion "

.....this is what it is all about after all, what I am trying to achieve

Yes My t4 is at half way yes, my miscalc!! sadly it used to be higher in range but don't understand why you say increasing levo won't improve conversion?

How does it work then pls

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Because it won't. All sorts of things affect conversion, low-calorie diets, nutritional deficiencies, cortisol problems, etc. It's somewhat rare to find out what exactly is causing it and fix it.

Increasing your levo - T4 - will increase your T3 to a certain point, but the conversion rate will stay the same. Increasing levo may increase T3, but won't increase conversion. I think you might be muddling the two.

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Yes am

Think I've been a bit brain washed over reading that it should be in top third yes it became all about numbers I can see this 😘

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....is there anything that concretely says you are hypo? Because I thought tsh was around a one for most wellness, imconcern as my son is at 2.9

Docs can put symptoms to all sorts, and these diseases without root causes such as ME and CFS so I'm told

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Your son has a struggling thyroid. It might be temporary or it might get worse. Time will tell. But he should continue to monitor it.

Hypo symptoms are non-specific. They could all be due to 'something else'. But, look at it this way: which is most likely a) you have 10 different diseases with one symptom each; b) you have one disease with ten symptoms. It's when you have a whole cluster of symptoms that you should put two and two together and come up with hypothyroidism.

Yes, of course ME and CFS (aren't they the same thing?) have the same symptoms as hypo. Most of the cases called ME/CFS are undiagnosed/under-treated hypo. Doctors just use them as an excuse not to do anything because you cannot prove you don't have ME/CFS. There are no blood tests to prove or disprove it. Which is very convenient for them.

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Awful, no root cause given so the person struggles on maybe into an unnecessary victim mode

Labels!

Yes I'm up to here with trying to help son, and need to shut up as it's sensitive to him, he just says he has treenut something or other allergies

I got him a Medichecks which reassured he had no antibodies going on but I see his make up like mine, hay fever, skin hives, puffy at times but he brushes it off the keniesiologist chap told him he has leaky gut and parasites (his international diet ) I've bought products for him but I can tell he isn't wanting to think this way so I can do no more ☺️ He's a man

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I understand.

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I've been led to believe that ft3 should be in top third

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That depends on the person. Some people need it higher, some lower. We're all different. :)

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You mentioned 2000 plus calories? I was surprised as you normally read a woman is 1500-2000??

As I've put in horrid weight I'd be unsure about increasing in case of more weight gain

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All these things you read about what a woman should and shouldn't do, they are talking about euthyroid women, not hypo women. The two should not be compared because they are completely different. You need calories to convert. If you don't convert, you get more and more hypo. That is why low-calorie diets can make you put on weight.

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.....sorry to say I am lost as I've just took on board I cannot, do not convert?.........

Lololol

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Now you've lost me, too.

You do convert some. If you didn't you'd be dead a long time ago. You just don't convert enough.

But, as I said above, there are many causes of poor conversion, and it's difficult to know what is causing yours. If you said you were on a low-calorie diet, I would say: well, that's probably it, then. But, if you eat around 2000, then it's not likely to be that. It could be many other things, or for a totally unknown reason.

Just because you eat adequate calories, it does not follow that you will convert perfectly, because there could be something else that isn't right.

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😂🤣

I'm sure I don't reach 2000 daily for sure but do have protein breakfast etc. Il eat more and hope I,don't put on weight

Summary

So I've converted a bit, and now I'm adding t4 to maybe make me feel better .........AND ADD ME A BIT MORE of T three, BUT I DIDNT CONVERT IT , ITS A RESULT OF EXTRA LEVO,,.?.. strange

That kind of sums it up

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Actually, I'm against counting calories. I have no idea how many I ingest, my self. lol

BUT I DIDNT CONVERT IT , ITS A RESULT OF EXTRA LEVO,,.?.

Sorry, don't understand that bit.

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Well, you said that taking extra levo doesn't cause me to convert

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Look at it this way. If you take 50 mcg, 20% should be converted to T3, and 20% to rT3 (forget the rest). If you are a poor converter, you will perhaps convert 15% to T3 (not saying you convert 15% to T3, I don't know, it's a made-up number).

If you increase your dose to 75 mcg, you will still convert just 15% of your T4 to T3. So, the level of the FT3 will rise slightly, but not as much as it should, your FT3 will still be too low for good health. Increasing to 100 mcg will not increase your rate of conversion, it will still be 15% of the T4 converted to T3. So, your FT3 will rise slightly again. But, the odds are it will still not be high enough to make you feel well.

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Aaah

But why the odds bit? Why not? I need more by the weight equation slow dragon gave

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How much thyroid hormone you need has little to do with your weight. The weight equation is for people who have just had a TT, in order to calculate their starting dose. It is adjusted after their first blood tests.

I don't doubt you do need more. That's why I said 'the odds are it will still not be high enough', your FT3 that is. Why not? Because you are a poor converter.

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There is no equation that works for everyone. The only so-called equations are the results of taking a study by someone called Poli the wrong way and taking an average of those results and saying that they apply to everyone. What Poli actually found was that there was a huge difference in the amount of T4 and T3 produced and converted and so on by different people.

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...penny dropping! Phew. It was becoming a war with numbers!!!

( is it true ranges are the Lab people just wondered esp as some ranges are identical from different labs)

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That's a great explanation for the whole conversion thing - even I understood it!

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Thank you, Nico. :)

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Yes!! Could do with pages to read by GG

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Stress probably, caught in anxiety loop

I am going to press for new hip , the discomfort is a bit much now and keeps me awake so I don't think it will resolve, it may improve but time is ticking, and it slows me down

I'm sure the lack of exercise hasn't helped my situation

Appreciate your very raw deal, well like mine similarily as I can see hypo as young as 8 yrs old. But at least in your favour you know where you stand/ stood, and knew your best and only option of way forward which allows you to move forwards with stability

well I hope so

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Well, I didn't know until I was about 60. Better late than never, I suppose.

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Me sentiments entirely .....on a good day. Ignorance is bliss I wonder how much mental torment makes it worse

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I am tempted to agree: ignorance is bliss. :(

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Well you have brought great salvage of it by helping others please remember

There were good times, hey!!!

May is askmlastly if you are slim, got slim, when you took your t3?

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Complicated. I did lose some weight, but I'm by no means slim! Far from it. I'm not losing any now.

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....more important to feel human 🤗

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Wouldn't say I feel that, either, right now! But that could be the heat. I cannot stand the heat.

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Were you a yo-yo weight person, think it's prob connected ? The type to put it on by looking at the cream cake 🤷‍♀️

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Yes, I was, but that was the Hashi's. Diets didn't do anything, but when I had what I now know to be a Hashi's 'hyper' swing, I lost weight. Nothing to do with cream cakes, my extra weight is water.

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Hope you get relief somehow

Yes me too, I think I must be hashi even though it's been debatable, I lost loads and felt so well at the start of this! It was similar after birth of first child

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I lost a lot with the first and the third - both boys. With my daughter, I put on a ton!

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Midwife told me. more hormones going on with the girl babies

After my first, (preeclampsia at 39 weeks ) I got bags of energy and walked the pram for,hours!!!! Lot of lost weight, Bought dungarees. Felt a million dollars!!!!! And I'd had carpel tunnel which I got with the other girl pregnancy too, not with the boy! I got my postnatal depression after the boy, did,you?

However, I had worried inside I'd get the pre eclampsia again for,the whole pregnancy ( poor babe). So,etimes you collapse after holding up but I can say I felt exactly the same at meno, but far worse!!!

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PND with the first boy, yes. Felt like death through all my pregnancies but they got successively worse. The third one I was sick for the whole 9 months. Got told off by midwife for losing weight!

No idea when my menopause was, because I'd had a hysterectomy at 41.

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O no - Hypo!!

......Feeling dozy days and night

Mirror says I look a fright

Hair is odd and eyebrow gone, 🤷‍♀️

Can it be I've put on a ton!!!?

Loads to do & grass to mow

Need automatic, No mojo!!!

Must buck up, feeling Low!

Got dressed up but cannot Go!

Went to doc, reassured to say,

'Never mind it's just the way'. 🤷‍♀️

... "Have a rest and tablet take"

You'll be fine, for goodness sake

You're one of many in modern world

But I must be odd on settee curled !!! 🤷‍♀️

I'm not old but feel 100 plus......

Needing vits, that's a must

Need a hormone all will do,

How many to take I haven't a clue .......🤷‍♀️

But if I crack this you never know

I may climb that mountain and ski the snow!! 🤞🏻🤞🏻🤞🏻

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lol Who wrote that?

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I tend to do poems when feeling overwhelmed 😱😱

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Well done you! :)

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🤣I can't think straight but can find a rhyme, the ever wonderful bonce

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...is water to do with lymphs

Do you have mucin thing?

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This is often said (FT3 should be in the top third) and yet I’ve added T3 and my latest result was only 4.8 (3.5-6.5) I felt fabulous but I did increase by 5mcg just because of a bit of constipation and still a terrible monthly period. So I jumped up to 20mcg a day and those symptoms disappeared. I’ll see what my FT3 is in a week when I do my next bloods. But I don’t expect it to be very much higher. And I guess that’s just the way I roll, I don’t need a really Hugh FT3 to be well. But the slight increase has made all the difference.

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👍 .Let me know how you go Paula

I'm now in the grind of trying to up levo but I imagine I will need t3 I've even got some in the draw

Il be honest. I've been quite phobic in all of this and I'm quite scared of t3

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Nothing to be scared of. :)

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If the anxious voice of doom stops I imagine I won't mind palps etc

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No reason why you should get palps. Not everybody does. And, palps can be due to under-medication as well as over-medication. But it doesn't necessarily follow that you will get palps just because you take T3.

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If I take it, how much should I take with 75 levo

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1/4 tablet. Always start low and increase slowly with hormones.

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Do u need to take with levo

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You don't need to, but you can.

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...doesnt t4 need boosting as with taking levo

- or is it itrelevant

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Don't know what you mean. How would you boost T4?

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....Meaning keeping t4 going in to work with the t4

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(Work with t3)

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T4 doesn't work with T3. They have no connection. They both do their own thing individually.

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...so there is no concern about t4 numbers if taking t3? ( appreciate if have no gland its diff)

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That's a very individual thing. Some people are very happy with zero FT4 - like me. Others on here say that they need their FT4 at a certain level to feel well. It's something you find by trial and error, you cannot predict how much T4 you, as an individual, are going to need.

If one has an FT4 right at the top of the range, it is usual to start by reducing the dose of levo by 25 mcg when one adds in 5/6.25 mcg T3. As you are only on a small dose of levo, with an FT4 of about mid-range, it's probably ok to keep the levo at the same dose. It can be adjusted later if necessary.

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...adjusted Down

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Up or down, according to need.

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I can't pretend I understand because at end of the day it's all about the t3 so in fact, why do you need levo at all ?......

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It isn't all about T3. T4 has it's role to play, too. I'm not sure anybody really knows exactly what T4 does, but one thing is certain: it isn't just a storage hormone. And, as I said before, some people absolutely need it to feel well.

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Oh. I was being black and white that the end result of taking t4 is to give the body t3, I didn't know it had other advantages

Re absorption what do you think of taking QlO. As it helps cells absorb, or the other one, Ubiq

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I've never heard that Q10 helps cells absorb. Absorb what?

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Q10 provides energy to cells it's a coenzyme - improves heart health and blood sugar regulation ubiquitous is refined form better for older

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Yes, I know what it is. But you said it helps absorption. Absorption of what?

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Dough

Well i guess its not to do with receptors then haha

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I don't think so, no.

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'Says. 'The cells to,absorb". How Do you explain it

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Taken out of context like that, I've no idea. Which one are you taking? Can you give a link?

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I was just asking basically what does q10 do as I've interpreted it wrongly

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As far as I know, it's an energy source in the cells. And it acts as a mild anti-oxydant. I've never heard of it doing anything else.

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Can that help t3 receptors

Where are the receptors

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No, I don't think it has anything to do with T3 receptors. They're on the outside of the cell. Q10 is inside.

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🤗

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...I read levo pamphlet now and yes it says don't take if adrenal insufficiency which may explain

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It always says that, but nobody takes any notice of it. They're just covering themselves. Doctors never even test adrenals before prescribing.

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No I'm sure they didn't

I led to believe it has to be listed if one case has presented it

...sadly impressionable at then moment

But other member wrote on thread Dr p told her levo was dangerous if adrenals low so had struck a chord

He told me to keep natural not,synthetic

🙈.

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Decisions, I didn't do,well,with Metwvive or my have messed it up

I may have to go just t3 or ndt

I feel a pain but truth is I've lost a few symptoms on levo but have never felt well. You know what I mean. Well

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I see no reason why you have to forgo the levo. That doesn't make sense. You've never felt well on levo because you haven't been converting it very well, but that doesn't mean you have to stop taking it once you start taking T3. That's rather like throwing the baby out with the bath water.

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Well, I think dangerous might be a bit of an exaggeration. I took levo for about five years not knowing my cortisol was very low. It didn't do me any actual harm, even if it didn't do me any good. But, even with my cortisol in a good place, I couldn't tolerate levo.

However, I do not put that down to it being synthetic. Because on NDT I was even worse! I'm happiest on synthetic T3 only.

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Yes it shows how true it is there isn't a right or wrong just what is best for you

When you say you couldn't tolerate levo, what was happening

I don't think I'm good with levo

If it's ethical I too would like to try just t3

then if nec an ndt with least fillers

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I mean it was the T4 itself that didn't agree with me. It made me feel bad, accentuated my symptoms, hair fell out, put weight on, etc.

Your problem is that you don't convert well, which is why you need the T4. I converted very well, so not the same problem at all.

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....sorry 🤷‍♀️ Why do I need t4 to convert

This is my block

Is it what you explained about my limited conversion, yes I get all that

But why does taking t4 levo help me convert

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Taking levo doesn't help you convert. It is the levo (T4) that is converted into T3. T4 is so called because each molecule contains 4 atoms of iodine. During conversion, one atom of iodine is removed and it becomes T3.

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👍 got it by Jove. (Was I meant to push through the higher dose, I know it's awful and wipes me out and makes me feel sick but am I meant to do it maybe I'm just wimp )

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Only you can decide if you want to do that, or if you want to go back to 75 mcg and add in T3.

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Yes. Il,sleep on it it would be slow I'd alternate

... Thinking maybe this setback is adrenal based as I've not been supporting

And of course for what it is, I am defying the Endo

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Endos were invented to be defied! lol

What do you mean you'd alternate? You can't alternate with T3. It has to be a constant steady dose every day.

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With respect you can't say it didn't do you harm as it may have had adrenal affect

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Judging by symptoms, in retrospect, and in the opinion of my hormone expert, my adrenals were already shot.

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How shot. Couldn't they restore

When you say shot do you mean very low cortisol and DHEA although I ha net a clue about it

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They did restore - otherwise, I'd be dead. When I say 'shot', I mean exhausted, worn out.

Yes, I mean very, very low cortisol and low DHEA. I had to take HydroCortisone for a couple of years to restore them.

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I have wondered about it

Does DHEA 2 mean anything I know it's low

I was DHEA 3 when I saw dr p

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Well, it means your adrenals are struggling, and your sex hormones and cortisol are going to be low.

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I'm unsure how to support them properly as can't get in touch with dr P

I doubt the NHS urine test will show up they are struggling as it didn't before and it wasn't so long at that point I saw dr p

The Endo last week said oh your adrenals are fine as were checked in Feb 18

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Well, perhaps they are fine, I don't know.

Dr P has retired.

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What do you think of the natural sex hormones ? Older women have them now

Would DHEA improve

Just wondering if these can help the whole situation ? They aren't so expensive as thought

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I know nothing about sex hormones, I've never taken them. Where do the 'natural' sex hormones come from? Horses? I wouldn't touch them with a barge pole. It's terribly cruel.

But, no, I don't think they can help the whole situation. I don't think that's the right was to tackle it.

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Well DHEA 2 like said

Yes I believe it's a part of it, no I wouldn't want horse urine as in NHS hrt

.....yam her as Carol vaudaman has it (tv presenter ) her switch came back on she said

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I have no idea about that. I don't know Carol Vaudaman, but no doubt she gets paid for saying the things she says. I wouldn't put my trust in a yam, I don't think.

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...called bio identical hormones

Plant ostregens etc

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...back to olden times before chemical drugs

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Not my bag. :) The menopause was a long time ago - and I don't even know exactly when it was, I didn't have any symptoms. So, I've never taken HRT.

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..thats something to be grateful for 👍🏼

My switch went off ( like carol said) and same as my PND but of course it righted itself at 35

.....goes to show its the whole shaboodle of all hormones 😬

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All hormones work together, yes.

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Yes

Do some of us need more ostregen i wondered is this why tearful for no reason??

Or even testerone

Altho wellsprings say take progestetone till 100. To balance

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Of course. Idea is your t4 converts to t3

So my t3 is. 25 pg ( looks like a p)

So a quarter is 6

When do you Up it pls

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6.25, actually. :) You can increase by the same every two weeks. But, when you reach 25 mcg, hold for six weeks and then retest.

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👍🏼

T h a n k y o u

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You're welcome. :)

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....done the deed! No drama !! 🤣😂🤣. But yeh it's all about the t3 so why take levo?

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Reassuring

Do you take it twice daily or three

Can it be on own without levo?

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If you start out on 1/4 tablet, I would take it once a day. Best not to split such small quantities. As you increase your dose, you can experiment with splitting it. But, for maximum absorption, you should take it in the same way as levo: on an empty stomach, leaving one hour before eating, etc.

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Oh god no don’t be scared of T3. I understand though. I was too but I seem to be a bit of an enigma, T3 did nothing but help me. I didn’t even get any bad symptoms. I just took 5mcg 3 times a day with my Levo for 2wks and then I took 10mcg in the morning with Levo and 5 at night. Then after my blood test I did 10 in the morning, 10 at night and then 2wks later I just took 20mcg in the morning with my Levo. Most people of here advise to start slow and it is good advise but it scared me but now with hindsight I felt like my body was just craving it so much that it relished it and I didn’t have any horror story.

If I were you with a history of being sensitive to Levo I’d drop the Levo back down to 75 and add in T3.

Could it be any worse than how you feel whilst trying to increase the Levo? Your story just reads like an increase is going to do jack all. I mean 2yrs to get to 75? That’s insane 😩

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Well is it, if adrenals flat as pancake.

Had drip feed stress for donks

Dr P believes it but others don't

If I took t3 can I revert back to see if I get ill again 🙈 I DO need a break

And I believe the t3 will go straight where I need it most - does it?

For me it will be bonce

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Bonce

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Bounce? Lol I don’t know much about adrenals and you have had a lot of advise to think over so absolutely take a breath and be your own best judge of what may work. I think the main thing is to not get despondent. There are options that you can take to get well. If X doesn’t work the. Try Y and then Z and and.

But what if taking T3 helped your adrenals? Does that happen? What if low T3 is keeping you stressed? What if T3 is the answer? I certainly give it a go if I’d had years of symptoms.

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Yep. What have I to loose. I am despondent, ( hence stupid limerick I just wrote)

How much t3 would you start with levo 75

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I’d add 5mcg at a time and build up, 5 is so low a dose but you’ll either not feel much different or second guess yourself if you do feel different and initially with such a low dose it might be a placebo effect but the main thing is that you want to be cautious (my thinking is that you’ve had a mare of a time with Levo so take it slow)

So if no side effects then add 5 at night before bed. Then add in an afternoon dose if you like. Only you will know how fast or slow to add. If no side affects after initial 5mcg started then I’d add the other 5 after a week. Then I’d probably wait 2-4wks on 10mcg and see how I felt. It really does depend on so many factors. How well do you know your body? How intune are you? What about stress? You mentioned a new grandbaby on the way? Diet? Vitamins ect. What what comes first the chicken or the egg? I barely ate when I was Hypo so my diet wasn’t great and I’d no inclination to sort it but when I got the balance right with the T4/3 then my appetite returned and so did the love of good food and cooking.

It’s so hard to sort everything out at once, something has to change in order for everything to get better.

Let me know how you get on and what you decide to do 🤗

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O thanks Paula

Il sleep on it

I feel dreadful and yes I'm stressed car hunting ( for five doors for baby etc). and have a big worrying issue going on since Nov

It's huge to me and I thought I was going insane and screaming in the car as catastrophic, I can't talk about it

So yeh, stress rampant, have calmed lately moreso but I have suffered anxiety and brain fog all the while for,years

Awful business .

Wondering if I take the t3 will it work for me ok. as I've not had good levo record anyway as you Mentioned ........

I expect you take them together?

Maybe it will help adrenals , some say this it's all a vicious circle

Do,you take Lion.............. t3?

I've got that one

So,you think 75 levo plus 5 of t3

Do you take levo twice in the day too?

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Morning Jeppy. Yes I take a LIOTHYRONINE but that’s a mouthful so we just call it T3 😀 I only take Levo once a day but some members think you can spilt that also into 2/3 doses. So really it’s up to you 🤗

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👍and I was such a forthright person of old 🙃🤣😂🤣

Thankyou, deed done

....Maybe get X-ray of hip if it's slowing you down. Mine is ok when I get walking but hard standing, getting out of car and first thing x

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Thanks Jeppy. It’s my pubic bone where the pelvis meets in the middle. It doesn’t slow me down too much, I run and exercise but can’t sit on hard chairs or sometimes I’ll get a stabbing pain when I turn so not too bad, just annoying 😩

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Firstly t h a n k y o u much much appreciated

....I've just took 75 levo and 5 of t3 ish. lol it's a nightmare to cut even with cutter!

So, that's me I wonder if I can cut out levo if it goes well

(What does second guessing mean exactly?)

I hope your groin is ok when not pregnant, congrats on your brood, I loved it, (had 3 under 5)

Yes my hip wear is anteria this is why the pain is in the groin - I have always been a bit pigeon toed and knocked kneed on this leg so I think it explains it !! and actually think therefore it's served me well 🙃 Lol

Thanks for support, and giving perspective, feel better now have decision made ( all about control I guess which goes away easily with all this info and uncertainty and let's face it you aren't in a good place to make decision !! )

Have a good weekend. Good Vit D day 🌞🤗 lol

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Every single cell in your body needs T3. Assuming you don't have an absorption problem at cellular level, it will go into the cells. But, maybe not all of them to begin with. You have to build the level up slowly.

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Yes

And if you have absorption problem how would you know and where does it go

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What are you taking for your adrenals? Dr P is right about the adrenal/thyroid med caution. The adrenals need attention before the thyroid... I'm sure I read on the contra-indications for Levo that it shouldn't be given to someone who has adrenal issues.

2 years ago my GP said I was slightly hypo and ignored all my complaints about my low adrenal reserve and whipped out the pad for a Levo prescription immediately. I was wary and refused it. I then saw Dr P who said it would have been dangerous to take it with such poor adrenal output. That is advice I won't forget in a hurry.

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Hi and thanks nico Did dr p do the kneeling on chair testing for you? What have you taken

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Dr P also did the BP test both sitting then standing. I had all the classic signs.

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ME TOO

Do you mean way up?

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P.s. How did you know adrenals were down? ( I can't cope with stress and feel overwhelmed a lot)

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Yes, Dr P did the Achilles test and the one where I had to stand one foot in front of the other with arms out - then close my eyes. I promptly fell over.

I was told, after repeated periods of extreme stress and poor health from Crohn's (during which I was given high-dose steroid courses) by 3 different GPs that my symptoms were probably due to adrenal fatigue. Each time I was also told to avoid stress. That was it.

Then my bloods showed me slightly hypo and I was offered Levo immediately. I refused and found Dr P.

The chronic and severe stress over a period of years, as well as the repeated courses of high-dose prednisone, made me think it was low adrenal reserve. It made sense. Dr P confirmed it in a few minutes.

Also, at the time of the diagnosis I was thin. This would seem to suggest adrenal problems were dominating the hypothyroid at that point.

Dr P put me on Adrenavive 1 and, after a 2 week wait, Metavive 1. He suggested a physiological dose of prednisone, since my adrenals were producing almost no cortisol, but I felt so good I didn't bother - and after my history with steroids, as you can imagine, I didn't want to go back there.

Then followed more severe stress, so I went on 5 mg prednisone and still take that. I have upped my Adrenavive, too, and am self-medicating since Dr P is no longer available.

The stress lasted 18 months, so I'm at the point where I'm more ill than ever and without Dr P to turn to I've had to learn to deal with this via reading and coming back to this site for advice - which is always great and makes me feel confident that I can get this under control.

I found going back to a LCHF diet helped a lot. I'd developed a large belly and had terrible IBS and migraines almost daily as my carb intake had crept ever upward to deal with the constant tiredness. The belly, IBS and migraines all went on this diet - the migraines were gone the following day!

I am now waiting for my NDT to arrive, as Metavive is no longer strong enough to deal with my Hashi's.

As for the adrenals, I don't understand why there is no adrenal equivalent to NDT? Or perhaps there is and I haven't found it yet. Does anyone know?

Anyway, that's where I'm at after 5 weeks spent off meds and getting tests done for adrenals and thyroid. Interesting to note I felt a lot better energy-wise within 2 days of going back on prednisone and Adrenavive.

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Actually, I think it was Metavive II not I.

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Fab paula

Bxxxxxxx the numbers

So do u need to take t3 With levo?? How can you when you split doses up ( why three times i thought it was twice daily

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I've found 3 x a day best (but I take only T3) . I tried twice a day and 4 times a day (too difficult to fit in with meals etc, but otherwise good). But some people do well on just once a day

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Thnku A of N

Dont you need t4. Sorry dont know your situ

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Initially yes take your T3 with Levo. You’re introducing it and doing it slowly. You may well be someone who only takes T3 eventually but as you do convert T4 to T3 then it might be best to keep a certain amount of Levo. Nothing is written in stone but even if you eventually thought you do better on T3 alone you’d still go through a weaning process whereby you gradually reduce your Levo whilst introducing T3. Early days baby,,try and focus on one step at a time 🤗

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👍🏼 I feel spoilt

Talking of knowing your body i do an occassional deep deep coughing fit 🙈 but always always feel better after its what i call emotional cough ckearing!! Had it since teenager it worried my mother but told her it wasnt i was ill!!!!

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Just had it!!! Result of That extra levo

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But im zombie today its very scary indeed

My daughters baby birth imminent ( im birth partner and driver) it is a hell of a place to be right now as was managing better on 75

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If you were better on 75 mgs stay there. It is really how you feel that is important. We are all different. Some people on here will say it is a low dose but if you feel ok on it. That is ok.

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Yes thanks G babe 👍🏼

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It's so scary and confusing, isn't it? You have to become a medical expert whilst at your most exhausted and fuzzy-headed. The system stinks like a week-old trout in August.

I never thought I'd understand any of it. I joined here over a year ago, came on the site, thought: I can't understand a bloody word of this, and then didn't come back for a year...

However, I'm re-reading Dr P's book (which may as well have been written in Sanskrit the first time I read it) and, after a couple of months coming on here regularly (even if just to lurk in the background), I've found I 'get' most of it.

Stuff does eventually start to stick I'm happy to find. I even understand most of the jargon and acronyms now (I think that's what put me off coming here after the first time round).

The help on here when you don't understand things is amazing. People are so patient.

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....tell me about it, you post on cringing (I do) I hate asking and now look at this thread

T h s n k y o u. Again all

Yes exactly as you write it!! I got the jist of it and absorbed lots of stuff but cannot process for me!!!! And too much information and uncertainty

As have had anxiety and phobias so I hate putting anything inside me ( long story started when Freak accident &swallowed a bit of bleach .....).

I've mislaid dr p book or lent it out I must re read

I tried to get back to him but no joy

I'm under a lot of ongoing stress this year it is a long drawn out affair so of course, it's adrenals, I'm not acting on it

What do you take pls.?.

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Ps

I did see dr P and he gave me Adrenavive 11

I only stopped a short while ago as it was out of stock and had some nutri adrenal I took then I stopped it a few weeks ago as didn't feel,great

In hindsight now it's staring me in face my adrenals are struggling worse I read levo pamphlet just now as Gillybabe wrote above it says don't take if you have adrenal problem so now,what???

Gobsmacked it isn't taken more seriously as maybe it is a bad idea for some of us if have adrenal insufficiency

And dr p did imply keep natural, I didn't get on with the Metwvive so slipped back to levo

May I ask what he suggested for you x

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I answered a lot of that in response to your other Qs. I just saw this comment as you posted it to yourself and didn't direct it at me (I do that a lot - brain fog, eh?).

You shouldn't take the Levo until adrenal issues have been resolved. If you're taking Adrenavive then think about adding 5mg of prednisone to help your struggling adrenals, then address your thyroid after a couple of weeks of that.

Have you thought about NDTs? I always prefer trying the natural route first.

I kept upping my Metavive until eventually I thought I had to look into something else, as on 4 capsules a day (and I could easily have taken more to get a better effect) I just couldn't afford it on an ongoing basis. Nor had I realised there is little or no hormone in Metavive.

I also switched to Nutri recently, as it was on offer. Didn't feel as good on it - but it only has 100 mg adrenal tissue in each capsule as opposed to 160 with Adrenavive. When this bottle has gone I'll go back to Adrenavive, I think.

Did you realise that Nutri was a lower dose?

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...i got nutri extra in error its 200 so when i felt so rubbish and taking it i did my ‘anxiety thing’ and made swift decision i was out of depth so stopped it!!!

I ordered adrenavive yest

I got adrenavive 11 again as dr p prescribed

Yes i did metavive 1 and same nico, i upped it and felt no better and was unsure about it not being balanced

So, here i am back in levo and feeling like im either 2 sheets to wind and brainless or a bit wired ( not the real me)

Good to chat thnx

It really helps when someone experienced similar

I coukd have had four metavive too and i tried like mad to get dr p advice but no replies.

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Ha. 😱sorry! ‘Doc’ 🤷‍♀️

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Dr P has retired, I think. The phone doesn't even ring anymore.

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He has dond a lot of good

Hope hes ok he was poorly when i saw him

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Yes i prefer natural always have, brought children up on homeopathy, not one antibiotic as saved it in case dyer emergency

Dr p said stay natural

Im just unconfident i still get irational panic - had ptsd and i started the panic button then.

Still get flashbacks so im an odd concoction and get overwelm trying to sort out what to do and im noticing im a bit too impressionable at times

I actually have a pack of predisinole the dic gave for itchy undiagnosed rash....hav you had this at all? She said lets

‘ zap it’ but i prefer root causes, your body is trying to tell u something with symptoms LoL Is one pack enough to help i wonder

Can you refresh me of the archille test? PM ok if you dont mind. Il do it with daughter later

My saliva cortisol is too high at bedtime at moment

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My skin does get itchy from being dry and I have had patches that start itching for no reason. My skin has gone a bit haywire, TBH, since getting all this.

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I had itaround neck hairline and then saw exactly same on internet saying adrenal insufficiency - strange

Good news is it cleared up when Adrenavive and body itch went at some pount, may have been levo fillers possibly? Will it help if take predisinole for a month

Lynn at dr P said steroids ok

My skin v dry and bit of vitilligi.....

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Dr P said 5mg of prednisone should be taken for as long as there's low cortisol. Not if cortisol is high, though.

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Hi. Ok. Thanks

Do you think he means high as in over range ?

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He meant high as in not very low or producing enough cortisol. I produce very lttle - hence why I have to take it. If he thought you needed it he would have said so. That said, maybe get things checked in case it's dropped of late.

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Dhea was 3 then which he said was a bit low and now its af 2

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No idea about DHEA figures. I'm waiting on the result of my tests and will have to ask on here what it all means. I'm quite new to all this.

Did you post your results on here somewhere?

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Yes I did. With respect I got little back re adrenals as it's mainly thyroid site of course and some believe the adrenals will sort when Thyroid is sorted .... sadly I believe dr p (the other way around ) as I've been awful with levo and he said it's because of my adrenals - Have you put in on SEARCH.

Also my DHEA is Low at 2 or 3 which is because hormones sex ones too are down

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Yes, I struggle to get adrenal info - both on here and elsewhere. It does seem to be mainly geared towards thyroid. remind me, do you have Dr P's book? If not, worth a read. He covers adrenals in it.

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...mislaid but yes I'm on it I do need to reread

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Sorry yes there is quite a lot on DHEA and adrenal if type it in Search box, so click on search -it's where you can click on New Post at the bottom

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The Achilles test is where you kneel on the chair and he taps your achilles tendon - the one you mentioned.

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...fo you know what happens to identify it 😊

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...what then happened for him to decipher adrenal failing?

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Well, it was all of the things I mentioned: the balance test, the Achilles test, the BP sitting and standing. Plus the Q I completed gave him a pretty good idea - the tests just confirmed it.

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Yes of course. Sorry for misunderstanding .

.......

🙃 I was trying to remember what it was that he saw when I was kneeling on the chair . Can you remember? I couldn't see -

He did say can you turn and watch but I couldn't !

I thought my daughter could watch for me as a good guide

If you can't remember I will have a goooogle

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That was it - the Achilles test.

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Also worth mentioning I take the support supplements Dr P recommended. I did get sloppy with those but I think I've nailed them now.

I found I had very low ferritin thanks to this site and am working to resolve this by eating chicken livers with brekky - not bad at all, I have to say, if sautéed in lots of butter with a little seasoning.

I also bought a selenium supplement, as relying on Brazil nuts for selenium probably isn't enough (that's for my thyroid, though).

I finally went caffeine free about a week ago. I'm hoping that helps my poor old adrenals, too.

What are you currently taking, supplement-wise, for your adrenals? And what is your diet like? Do you also take supplements like selenium for your thyroid?

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Yes

Funny! Iv just done caffeine free when i stopped nutri adrenal, i bought holy basil but GG doesnt recommend

I dont know if should get ashwanda ? I thought holy basil may buck up Liver, all in same equation gut health etc

Iv got a healthshop in cupboard!!!!! Expensive too and mostly wasted

Iv took selenium fir 18 mths now i upped folic as necessary, iron ok i cant do liver but do have pate as thought it may be option

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I use ashwagandha at night - and cordyceps.

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....what is it to do? Any improvement?

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I think so. Hard to say at the moment since I'm just restarting my meds after the testing.

Adrenals are tricky, since so many of the symptoms are the same for thyroid.

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Yes. ''Tis bit of a minefield

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Relaxwell by Naturwlly Better was suggested to me it has L-tryptophan

I'm confused now I have to say!

Take C. D spray B12 sometimes. A good b complex. Magnesium important one, fish oil. A&E. folic sometimes zinc I haven't bought copper?

I must get an updated test soon

I hope at some point I can take a good multi mineral !

Ah well the lady in our health shop says she takes 26 every day 🙈🤗

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Yeah, I take loads. But I think it's best to concentrate on the ones we need most and go from there.

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👍🏼 Thnku

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Did u say you having ndt Nico

If know where to buy pls coukd you PM if dont mind

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Not yet. I have ordered some from the US, though. Hopefully it won't take too long to get here. I'll PM you the brand I've ordered.

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Ok thnx

...the adrenal Archille I can't find, it is about something else

I've just read article by dr P re adrenals which il post on when I take advice how to send it on

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...youre rught!!! We all diff

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I feel its judgement time

....do vits stay up in good measure once eithroud?

I cant inagine managing regular testings ongoing

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If raising your T3 to euthyroid levels - only slightly higher, because you're basically hypo - improves your stomach acid, and thus digestion, your nutrient levels should stay good.

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