Doctors say that if you have high cortisol, you don't have adrenal issues, quite the contrary, that they are working well. But my fatigue is bad. Presently unmedicated as stopped Levo couple of months back as felt worse. Now I know I need to do adrenal stress index 24 hour saliva test...but was debating on self medicating with nutri adrenal then nutri thyroid, but to be honest...there is also confusion re. Hashimotos, high tpo antibodies etc....ie docs also say get the thyroid in order and antibodies disappear...ermmm not what we understand. So I am in the pickle of debating and being too tired to get retested etc etc...don't want to take T3, which was what I was intending, docs won't agree to NDTs, Armour etc. I have yet to go back after stopping Levo, as they won't be impressed I came off it. Thyroid was severe or rather TSH was extremely high over 100, last tested... T4 under and T3 in range, which confused them again. The trouble with feeling so ill, is that it takes a lot to put yourself thru tests if you are me.
I also debate about bioenergetics??? testing.... used to be vega...now new machine, can't recall name...and also debate about hair testing to check minerals, vits etc....
I really don't know what I am going to try to be honest....I have been trying to better diet and rest....however I also tried some gluten free bread...and it was so inpalatable....if anyone knows a good one....
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You're at risk of going into a thyroid coma (myxedema) with TSH so high & that's why you're so very fatigued. I expect you're freezing cold and constipated too.
You need thyroid hormone replacement of some sort and quickly.
Don't worry about what your doctor thinks. Just get some Levo & T3 if your GP will prescribe it. If not, buy T3 or NDT online, but start Levo NOW.
I did the same for 4 weeks in Nov. Felt great at first but very sick the last few days and TSH was 107.5. I've accepted (with poor grace) that I will not be prescribed T3 and will have to buy it online to cope with the T4 side effects.
PM me if you need online sources but please believe me you need T4 IMMEDIATELY.
Hiya, thanks for reply. I was on Levo and in fact from the first tablet at 25mcg it affected my spine, disabling me. I continued with it.... raised it to 50mcg had mega dizziness, changed brand etc, changed back tried to up it..... so two brands and three levels didn't suit me...I could not go any higher, I was having severe side effects that were intolerable, the heart fast and sensations of throat ceasing and couldn't breathe during many episodes... too unsteady...could simply not go upstairs and coming down just as bad as to get round top of landing to first step, I felt I was going to fall.
When I stopped the Levo, I started to feel great....legs felt lighter than ever...energy etc etc...then my usual sleep pattern changes happened and now Christmas stress etc...so I am exhausted...but what I realise is the above isn't very clear....I am that tired. I wasn't tested whilst on Levo in the last number of months, was planning to get whilst on them then after stopping but thought just recheck after a month or so off them,.which is the stage I am at. Silly I know, that I have no clue to what happened with lack of score for during Levo...but it defo does NOT agree with my body and I gave it months to adjust, but with an open mind as to needing time to get better...it was LITERALLY I couldn't carry on whilst it was disabling me more. The Docs were going to add T3, then I was told they hadn't prescribed it/. the issue is, if I am sensitive to Levo T4 and T3 is stronger and I have heart symptoms (NOT PALPS)....... THEN T3 is going to be dangerous too??????
I wish to try something more natural and more gentle....whilst trying to sort root cause. Apparently 20% of Hashi can go into remission.... but not hanging on to that...but without trying etc etc....
It's a myth that T3 is dangerous. T4 converts in the liver to T3 so it is a naturally occurring hormone. Too much & too little hormone can be bad for the heart.
Could you write a letter or email to your GP outlining everything you have posted, especially reminding them that they were going to prescribe T3 because of the problems you had with Levothyroxine but never did. Perhaps they could call you to discuss as you're agoraphobic, although I feel sure they would want to examine you and do a blood draw.
Hi Clutter, I think the internet is dangerous and reading all the bad stuff... but I am like that. I was concerned as if I can't take T4 and T3 is stronger....with having heart symptoms and more so when I was on T4, it is scary. I felt I was near stopping breathing with strange attacks you see. The Doc via phone said he would speak to another doctor...not against young Docs but both were likely the youngest Docs could be...anyway, he failed to speak to the other and so I left it....thinking.
Funny enough I did write before Xmas and as yet, not sure the secretary picked email up, but I put a long explanation of symptoms and concerns etc.
They defo want to retest and that is something I have to battle with.... the attending, but I have made it before...I have to build up to it. Not just a mental thing, physically very wobbly.
I really want to find a way to get all vits, minerals, food allergy, hormone, toxins etc checked.....IF..people believe that say bio energetic testing is true. I can't afford to throw money away...but it has been around for years.....just trying to find where they do it and also trying to establish if the new Asyra? Machine is better than say Best machine etc etc...it's a minefield and takes time...I know I don't have forever to get going
All mine started with was prolonged stress and poor diet, but I wouldn't say I have solidly sorted what to supplement with and how much....until I know if lacking etc...I have taken standard supplements...on and off...and the brazil nuts.
If you feel really ill and your thyroid results are extreme then surely your GP should have referred you to a specialist endo clinic by now? Not just the local hospital...
I had similar symptoms when I started on Levo and it took a few weeks to settle down but overall I felt much better immediately and side effects weren't as bad as yours. My blood results were also apparently 'normal' even though I could barely function.
Re the GF bread, I have to have this. I would be very surprised if you found an artisan-type GF substitute. If you can manage on standard sliced bread then Genius is quite a popular brand. They also do a white bloomer which I really like with butter when heated up in the oven...
I avoid the vacuum packed sliced stuff. Waitrose fresh rolls are ok as are their vacuum packed ciabatta etc but I don't know what the wheat stuff tastes like!
Hiya and thank you. I asked several docs about endo including private, whereby my work asked and they all said no. It was the hospital lab, the nurse at the doctors surgery does tests, but I have so much negative feel about NHS and Docs I have had lots of appointments and got nowhere as they all think Levo is natural with no side effects. So since coming off, I wrote to the docs and they are aware, but I haven't been back yet. I have spotted a so called expert in natural/holistic field that specialises in thyroid etc etc but that will mean a lot of tests and a heck of a cost....BUT I have emailed, so see what they say. I would like to see if there is a root cause that could be assisted, albeit may not cure, but I will try to get the gluten and food intolerance tests done.
I tried vacuum pack years ago...disgusting, but not dry. The latest I tried was Freefrom and it was totally inpalatable and dry.
I have spotted Genius, picked up a packet off shelf, seen it was similar ingredients and not bought it, so I appreciate that knowledge. I also wondered if there was a fresh bakery version of gluten free.
I know people make their own, but that would be a major for someone that is as weak as I am at the mo.
However, strange how I feel better off the Levo....my mistake for not getting retested on it and since coming off...if symptoms persist in both cases....but I am 100% I was getting worse on Levo, after months on it and couldn't raise it as even smaller doses disabled me and I didn't adapt or feel improvement at all.
I am going to struggle forward, see what occurs with the holistic expert if I manage to fund appointments with them. They do check hormones, toxins, intolerances, proteins etc etc etc...not sure if NHS check all those...
Hope you get somewhere with it all and don't have too much of a runaround. Also with the GF bread, it is really for convenience, either to eat what you put on top or to eat on the run. But try all the different brands and their different lines as they taste different. I like the genius seeded loaf but my mum likes the brown one. We wouldn't thank you for each others! X
I am slow to get this underway, I keep going round in circles, the bad thing is, I have lived on bread and other products, cake, biscuits for a long time. I tried briefly to cut out bread and in short, it slowed things down bathroom wise, which is not good, but feel so hungry and lost without it, even trying to fill up with meat/veg etc, but I am determined, it is purely that I struggle to go out and have limited budget, but defo want to try to rule out all the suggestions of root causes.
I don't believe all I read or am told, but do believe the body has partial healing ability, just knowing what and how.
I have spent a bit of time on a certain link on FB, whilst I am wary of sales plugs, this person stands out against others as possibly being more sincere....but then again, who knows. They are very much advising on Root Cause and possibly healing/remission through their own experience, whilst being a professional of sorts. I don't think I can put a link, although name has been mentioned on this site
Yes I agree with Clutter, you need to be taking your T4. When you are next tested post your results and ranges and I'm sure you will then get loads of good advice as to what to do next. Unfortunately for a lot of us I can be a long journey and not a quick fix so patience is important to remember. I'm starting to feel better mostly down to supplementing with vitamins and minerals so that is something you may well need to consider but with optimum doses. Ideally you need a free T4 test and a free T3 but many labs will only do TSH. Again if you can't get them tested there are kits you can purchase through Thyroid UK to get them done privately-see web site. Don't go to a private hospital as they are very expensive. Good luck but remember you need to be taking your Levo, start very slowly if it appears to be upsetting you, the tweaking comes later to hopefully get you on the road to recovery.
Just re-read your post and see you did have free T4/3 results. Are you taking or were you taking your Levo away from food, and iron supplements and anything with calcium in it? You need to be doing that as otherwise the thyroxine isn't being absorbed properly. I take mine at night at least 2 hours after food and milk or you can take on weakening but leave an hour before breakfast and milk
I was taking Levo away from everything and I did go for night as I always need to eat first thing on getting up...also as my sleep pattern was so erratic, I couldn't guarantee being up by A.M at all..... lol. Levo was disabling from tablet one....two brands and a couple of rises later and I was well and truly disabled by it...so whatever body is doing, it won't accept Levo. It may freak at T3, which is my fear....as much stronger etc etc. For all I know it may not like any glandulars either.....remember my T3 was in range,,,,may not have been top but docs were confused as T4 was down...so body was making some by itself....
Hiya, thank you too..... as I replied above, I know I didn't explain very well in the top Q. The point is I am certain Levo does NOT suit me now.........I am scared of the T3 after reading about heart risk etc...for which I have some strange heart things that occurred with Levo T4 but are better off Levo...not gone, but defo better.
So seeking a more gentle way....possible glandular, but knowing Docs won't prescribe...so debates on Nutri etc etc... I can't travel, so can't go to docs up the country you see. Trying to resolve myself after spending a couple of years going not very far with NHS. I am too poor, but wonder if such tests can establish whether lacking in vits/minerals/....I have had hell with docs trying to ask them to do much at all.... yes they check T4/T3/TPO/TSH and iron and FBC etc but they won't understand the need for Vit D etc etc///three times I asked them and they failed,they agred then said couldn't do it.
Few years back I saw a Shiatsu person who told me I had adrenal fatigue....this is before the thyroid went....I didn't believe in all that shiatsu stuff....but if anyone does then could this be the high cortisol before the low, but adrenals needing support.....OR..... does high cortisol mean they are ok....this is my question, as I did think maybe that was why levo was disabling and heart issues occurred....but as above, the docs say not adrenals. I could simply order all the tests privately, but can't afford to waste any money that is hard to find anyway...
This site is good for finding people in same boat you see XX
You have some very unusual results, with skye high TSH below range T4 but normal T3. it would be useful if you posted the results and the ranges, and any other result such as iton, ect. from what you are saying I suspect this is not a straight forward thyroid problem. With a TSH over 100 most people wouldnt be able to function let alone post a question but your T3 isnt that bad which explains why you can. I am wondering if you have secondary or tertiary hypothyroidism
Hi Roslin. The Doc was baffled too. In 2011, first discovered I was hypo, I had TSH 77, T4 8 (10-22) T3 5ish (not sure range) then 2012 ll by itself after taking vits and rest... TSH 8, T4 13, T3 5.9 ish then 2013 TSH over 100 (hosp max 100) T4 8.4 T3 5ish then Levo with no scores as I am a nightmare but was too ill to endure tests....stayed on most of 2013 (Levo) and was so disabled by it came off...had enough, now couple of months off it...so need more tests, but as the Docs aren't too helpful and they were talking T3, then said they had never prescribed it....I am here, asking for alternative info, to decide if I can try glandulars to at least support. You see, why would I take T3 if it was the T4 that was low and T3 wasn't max but it was in range...hence I wonder about what else is wrong or lacking....
I had TPOab 200 in 2012 and in 2013 they had gone to 2500 eek!!
My whole situ was caused by prolonged stress, I had anxiety etc for 20 years, fight or flight all that time. But thyroid tests were ok, albeit no anitbodies checked in 2008....when I had hormonal issues.
So in a nutshell I am wondering and reading...could it be imbalance female hormone, they tested and inconclusive....could it be lack if vits minerals....the docs said iron and B12 ok.... but on reading they may not be.... Vit D I will get private test....as docs won't do it....but I know I never go into the sun ever...I do have vit D in food...but would that be enough. So hypothetical at the mo.
Then as above if morning cortisol high.....do I need to scrap the idea it is adrenals?
This gluten thing apparently there was a new trial in 2012 that contradicts and now says nothing to do with it.....I haven't had the energy to find the trial info yet. But was trying to consider gluten free.... only tried couple of weeks...but live on bread etc...so hard....but I tried shop bought gluten free and you can hardly swallow it.
TSH is telling gland to make more T4.....yet T3 ok...could be higher but is ok...hashi you're meant to avoid iodine supplements...I have been on and off with supplements (standard) and selenium via brazil nuts...it is almost like I convert T4 a bit fast...or just not enough of it, but I am sedentary...had to stop work due to this. Agoraphobic and too wonky to walk my own road even.
I was refused endo......docs said no need as it was levo for life....I do always ask them what I read or am advised....but haven't been back to them for months...as need to make my own mind up on which way we're going...ie self help....or try the dangerous T3 on its own....which makes no sense if short of T4 and not so much T3.
Logic says either the antibodies are preventing enough T4 being made.....ORRRRR.... I am lacking in something to make enough T4.....we don't know what damage has been done to date...
Between 2012 and 2013 when the TP0 ab had gone up ten fold..... I had been trying to get them down via selenium and better diet....but that failed.... so the theory of selenium lowering didn't work for me. XX
I think that you have to insist on seeing an endocrinologist, your results are not straight forward and I doubt a Gp would know what is going on. regarding your cortisol it is high and this could be caused by hypothyroidism and stress which you mentioned. Your cortisole can alsso go up if the person is very worried about the needle for example so I would ask for another 9am test to compare. It may be that you would do well on NDT but you need to get to the bottom of your unusual results first
Thanks soooo much Roslin. I am terrible with blood tests...because I blacked in years ago, when I was well....so now I am always edgy and queasy....and I am in fight or flight, that has been 20 years now.
I think I have lost faith in NHS and they do seem only into Levo for life kind of thing, so I asked a few times about endo but gave up as my other state (agoraphobia) makes it hard to think I can make it to even more tests...if the endo wants to do that....even indoors, corridors I struggle with etc. Likely sound wussy....LOL.
I originally said to docs so is it lack of iodine then....nope tablets for life....yet if T3 is ok ish and T4 isn't enough....that could be lack of something...aside the damage from antibodies of course. Who knows.... which is why on as little expense as possible I want to get to root....Take care and much appreciated
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Update on Visit to GP this afternoon re Getting Blood Tests
Blood tests are in, what’s going on??
Nutri Adrenal Extra
potentially unnecessarily medicated? 
Anyone with high cortisol?
