Hi all, my desperately awaited private second Endo appointment is tomorrow evening whereby I should get all the results back from the tests he had done. He spotted straight away I wasn't converting ; and even less now with the mega high cortisol levels I have which are still causing me extreme anxiety/panic. He also thinks I might have Reynauds
He told me to stop paying for private BH thyroid tests every month but I wanted another one done for my appointment tomorrow as a lot can happen with my readings in a month, and I was right to have done the test. Apart from my T3 slipping again to 2.74 from 2.88 last month (3.1-6.8), I have discovered that my Ferritin and B12 levels have also dropped.
Last month Ferritin was 87.3 (20-150) but it has now dropped to 58.3. My B12 last month 828 which was over range (but most of us sufferers know that was a reasonable level), test came out at 395 which is a big drop so I am back on supplementing both.
I will be pushing for him to start me on some T3 tomorrow night. He did mention how it works on my first appointment. He said that my meds will be about 80% T4 and 20% T3 which he will split into two doses throughout the day. Is that correct? He did worry me though in that he was concerned about the T3 making my anxiety/panic worse????????? That bit I don't understand??????
Much prefer to be forearmed with advice from you guys as T3 is new ground for me. What do I need to discuss with him as regards T3?????
I am also pretty sure that, apart from when I went hyper a few months ago, the severe anxiety/panic I am still getting is mainly to my very high cortisol levels. I can read my body now and usually early evening onwards I can tell that my levels have dropped because the anxiety sometimes just disappears (like switching off a light). It's very weird. Ordinary anxiety just doesn't do that!
My very worst time is first thing in the morning where my level is 82.43 (7.45-32.56). Have been taking Holy Basil and beta blockers to help and also ordered some Phosphatidylserine. All my 4 readings were high but on my recent saliva test my night time reading is normal. The two daytime ones are still high in the 20's which I can handle as regards symptoms, but it's the morning one that is debilitating. Endo had me do a 24hr catchment wee wee test which, after 4 weeks, am still awaiting the results.
My high cortisol levels need further investigation and that is an absolute priority for me now because to be very honest with you all, after being so poorly for 6 months with the debilitating severe anxiety/panic nearly 24hrs a day, I don't have the strength or the will to go on much longer and have been reading up on other methods to end my suffering (let's just say it's legal in certain countries!). That statement may sound dramatic and attention seeking but the fact is no-one can say to me that I haven't tried to get well - diet, supplements, meditation, research. I am a person who just needs answers to I can try and put things right. You guys have helped me a lot in understanding and supporting, certain members have been very kind with their regular support but there is only so much a body and mind can take. I know things take time but the last 6 months living in this body has been like nothing I have ever experienced before. I am not living, I am just existing with no quality of life
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Jefner
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Ah Jefner (((hugs))). You must be feeling so desperate
That's quite a dramatic drop in your B12 in such a short time. Good idea to go back on the supplements. Last time mine was tested it was in the 900s so instead of taking a Solgar sublingual 1000 every day, I dropped it back to just 5 days a week as a maintenance dose. You pee out excess B vits so there shouldn't be a problem. I struggle to raise ferritin but it looks as though you can raise yours again to a decent level by going back on your supplement.
I'm sorry I can't help much with the T3, I just add a small amount to my Levo as my results show conversion not brilliant but mine was never as low as yours.
It sounds like your private endo is more like an open minded NHS one that sees private patients rather than someone like Dr P. Does he acknowledge your cortisol problem? It's obvious something needs to be done about your mega high morning level. Where is your DHEA?
Dr Myhill has a few pages about adrenals, you might have seen them but if not here's one drmyhill.co.uk/wiki/Adrenal... . It seems to me that you need guidance from a practioner regarding what is best to take for your adrenal problem.
I remember now you asked me on another thread what I was taking for my low adrenal reserve. I consulted with a hormone specialist (other things going on as well as adrenals) and she was the one who told me what to take. I wouldn't have liked to do it on my own for fear of taking the wrong thing and making things worse.
Hang in there Jefner. Do you have support at home? I know it can be difficult, there's just me and my dog so I have to get on with it and some days can be hard.
I hope you get some more replies with better advice than I can give, and that your appointment goes well. Hopefully your endo will address your adrenal problems. Come back and let us know how it goes.
Sorry, I had to change the link for Dr M as the first one I put didn't work.
yes honey I have been feeling this way for a long time and there appears to be no end in sight Yes I thought the same in my B12 drop but it also went the other way when I started supplementing some time ago. When I did my first BH test back in December my levels were 334 so on advice from here I started supplementing 1000mg Sub lingual Methylcobalmin. I only took it for 2 weeks as well because my anxiety was so severe I thought it might not be helping so I stopped. My Jan reading came out at 615, Feb reading at 828, then as I said last week's test 395. Don't know what is going on with that and something to discuss with Endo tomorrow.
I live alone hon with my two elderly pets which causes me excess stress. My cat is 20 now and I dread the day I will have to have him put to sleep which isn't far away so I suppose that is preying on my mind. My elderly bunny isn't doing that well either. I have a bestie male friend but unfortunately he is making himself ill with all the stress he is under (family stuff) and he is always so short tempered and snappy with me. I have told him he will end up like me and have tried to help him but I have had to step back from him now and concentrate on myself because he won't listen.
I try so hard to keep my stress levels down because that affects my cortisol levels. Finding it very difficult to keep myself occupied because when you are in the throws of anxiety, you can't think straight or do anything, so I try the meditation to help with that. Also the nausea with the anxiety prevents me from eating as well as I did although I am sticking to all the good stuff that my nutritionist recommended and not eating any rubbish.
Spoke with another member who recommended someone for adrenals and who is well known apparently in the celebrity world for helping others. I will contact him if I don't think my Endo is helping me enough. I have researched enough on the subject to listen to what he says and compare his knowledge to mine.
I have already told my Endo that if he can't help me I am calling it a day because I don't have the strength or the will anymore to spend time, energy and getting more stressed in seeking alternative help. I can't travel very far either because of the anxiety/panic and am housebound. What with my high cortisol and low T3 symptoms I am a mess and I don't hold out much hope in getting better now, not after all this time
sorry Heloise, I know you are trying to help. It's just I am very sensitive to the bad side of meds at the moment. I am aware about the beta blockers and thyroid, I am supposed to take them regularly for them to work but I only take them when the anxiety/palps are really severe and I know I can't settle myself down. I also make sure that I take my Levo hours before I take my beta blockers. The ones I am on are only 10mg and I started off taking 1 twice a day about a month ago but then 2 when the anxiety was really bad. On a really really bad day I will take 3. I am bugger for taking any med (apart from my Levo). Being hooked on tranquilisers for 13 yrs many years ago put stop to me taking anything to be honest
I see, and since you may still be in withdrawal you may really need to adhere. It's not my area so I don't know if there are other ways to treat that. I just hope at some point you can stop.
A bit of t3 shouldn't in theory make your adrenaline problems worse, the problem comes with the take up of t3 that is effected by high or low cortisol. They work in conjunction with each other, low cortisol stops take up of t3 into the cells, which is why raising t3 or t4 intake when cortisol is low will lead to unpleasant symptoms but I'm not sure what high does but if you search you will no doubt find the answer. I can't remember too ill. I had high cortisol when I was first I'll with m.e, then after three years it had crashed and al on the floor. I self medicate with hc now which has enabled me to up my t3 only which has reduced some other symptoms like thrumming and tingling. I was on t4 t3 combo for thirteen years before I got m.e and didn't have a problem with it. Good luck.
thank you for your support Sulamaye, very much appreciated. Have made a few notes of what you have said for my endo appt tomorrow. So sorry to hear you have ME. How the hell do you cope every day?
I have a lovely partner who had it herself for sixteen years so I'm very lucky, my daughter suffers, feels the loss of me though, and so does my partner with the stress. If I knew five years ago I was still going to be ill I would have found it hard, so the real answer is you cope the way everyone copes with bad things, one day at a time and I never give up trying to find ways to recover. Although if my latest approach doesn't work I think I will have to start working more on acceptance as it can be counter productive to constantly hanker for what I once had. Try searching for cortisol and thyroid relationship you will find some clearer things, Paul Robinsons blog definitely has some stuff I seem to recall.
so sorry you are also having a hard time. It's so difficult to accept health changes isn't it especially when they may be permanent ones. It's like your life has been stolen from you and you want to know why. What the hell did I do wrong to deserve this when I have always been a good person!! then you get the tossers that walk this earth killing and maming people and don't have a care in the world. Now that really pisses me off!
Just had my GP on the phone! Apparently mum phoned the surgery earlier saying how worried about me she was. My doc phoned very concerned and wants to see me on Thursday to discuss outcome of Endo appointment and to see what else he can help me with. OMG that was a turn up for the books.
He used to be my fave doc there cus he said I used to make him laugh on his bad days and he always used to look forward to seeing me (which was rare until 6 months ago when my own shit started). We had quite a nice relationship going until then. We spoke on the phone some months back when I was really desperate with all the severe anxiety going on due to going hyper. Just because depression and anxiety is on my record, typical GP homing in on that instead of looking at the bigger picture. He wanted to prescribe me some anti anxiety tabs and couldn't get me off the phone quick enough so I decided I wasn't going to see him any more and now see someone else.
He also asked me why I hadn't been to see him for such a long time so I took the opportunity of telling him why. Time for a few home truths, so I bloody well told him. I did say I appreciated how very bad things are within the NHS and that GP's are so stressed but I still deserved a certain level of care and wanted to be spoken to like a real person instead of a number and I didn't appreciate him thinking I just had depression problems again, prescribing me more shit to mask the problems, instead of dealing with the route cause and actually WANTING to help me, instead of just doing his feckin job. Kinda felt good in my saying that to him although I didn't want to upset him too much as he is only 40 and the stress of the job caused him a heart attack last year!
Jefner, your FT3 is below range so the addition of T3 is likely to be very helpful. As well as improving FT3 I found the addition of T3 calmed some adverse effects T4 only caused. FT3 over range, perhaps even at the top of range can cause or exacerbate anxiety in some people but it will take weeks to build your FT3 level that high and, if it does happen, skipping a couple of T3 doses and reducing dose will relieve it within a few days.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
thank you Clutter. The bit where my Endo said about adding to my existing anxiety with the T3 being a delicate operation, is worrying me. I can't take any more that's for sure
Jefner, unfortunately T3 like everything else doesn't suit everyone and the only way to tell whether it is okay for you is to try it. Because it has a short half life if it doesn't suit it will be out of your serum within 6-8 hours of taking it and out of your system within 3 to 3.5 days of last dose.
that's a relief to know if it doesn't suit me. My Endo is thinking of giving me two small doses a day, probably a quarter of a tablet twice daily but until tomorrow night I won't know. Am I assuming I will have a lower dose T4 which I will take in the morning as usual and then slot the T3 in somewhere during the day?
Jefner, Get yourself a pillcutter from the pharmacy. 20mcg tablets are easily halved but quartering is quite fiddly.
Because T3 is out of the serum in 6-8 hours it is usually prescribed to be taken 2 or 3 times a day. Split dosing evens out the peaks experienced after a dose and the troughs experienced when it wears off. I take T3 and T4 in the morning and a second dose of T3 at bedtime. Some people find T3 taken late keeps them awake and prefer to take it before 4pm.
I would suggest that you might need to take beta-blocker very regularly to help lower cortisol and keep it stable.
See my profile - I take propranolol and done so for years. It is the only way I can tolerate being on the Levo. I even take Levo and propranolol at same time in evening.
Personally I found T3 and NDT did not help...but we are all different. I had to try it to find out! Suggest if you try it...you start on very very small dose.
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