Apologies if this is a bit long but I am very confused by this whole subject. I am self treating with T3 for Impaired sensitivity to Thyroid Hormone [ISTH]. I began to self treat in late January of this year - it was the right way to go because if I hadn't I don't think I'd still be here now writing this. I increased gradually without problems until I got to 56.25mcg - that dose was fine for 4 weeks [problems with supply so had to stay on that dose for 2 extra weeks until boxes of T3 arrived]. When I went up by a quarter tablet to 62.5mcg I began to feel unpleasantly hypo. I tried to stick with it for about 5 days or so but went back to 56.25mcg and they hyponess went away and things were fine for another 2 weeks or so and then the feelings of hypo [pain and crippling fatigue] returned so I dropped down to 50mcg 2 weeks ago and again things were fine which is where I am at now - it may have been a combination of a seasonal thing [warmer, so less need for hormone] and the fact that I was increasing my magnesium dosing; however, I am wondering if given what I recount below re iron etc, my problems with T3 raising at least are due to low ferritin.
I take D3 and K2 Zinc picolinate and vit C and have also been taking vitamin B12 but haven't been taking a B Complex. Unfortunately with all the covid business I don't have recent blood test results and haven't been able to speak to my GP. I saw an Endo at the end of last summer - GP said he would look at whole "iron situation" but sadly he didn't. My gut feeling is that I am anaemic. Over the last couple of months I have noticed that I am fine moving around the house, but when I go out for a walk within about 10 minutes I get a pain in my chest just beneath the base of my throat and it feels like I am finding it hard to get enough air in, although if I keep walking this subsides and I can manage to walk for 2-3 miles. The most recent blood values I have for iron were done at the end of June last year and are as follows:
Serum transferrin - 3.16g/L (R 1.9 - 3.8 g/L )
Serum ferritin - 14ug/L (R 13-150)
Serum iron level 18.8 umol/L (R 13 - 27 µmol/L)
Serum folate 13 ug/L (R 3.9 -26.8)
Serum VB12 - 485 ng/L [Active B12 - medichecks result 65.800 pmol/L ( R 37.5 - 188)]
Transferrin saturation index - 23.8%
Serum CRP - 0.9mg/L
I have tried to read as much as possible around ferritin [mine has always been low - in 2016 it was 10] folate, and vitamin B12 and the interrelationships between them which I am afraid to say my brain in its current state just finds confusing. I am wondering whether I should add in a B complex supplement and also whether I should supplement with iron. Over the course of the last year I have just been trying to eat as much iron rich food as possible but am not sure whether this is working for me, or whether I am missing something [like a MTHFR B complex] which would assist with its uptake. Any thoughts or advice would be really welcome. Thanks for taking the time to read all of this.
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Redlester
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I am so sorry to hear how I’ll you feel. I am no doctor therefore this is just my thoughts. I would be straight on the phone to my GP and telling him/her how I feel. My ferritin levels have been low before and I take iron tablets supplied by my GP. I was told by my Endo many years ago that ferritin must be over 70 to allow the thyroid to work. I would be feeling very ill with those levels and breathless. My advice is to speak to your GP without delay and make them aware before you start to self medicate on iron tablets. Get them to do a blood test ASAP. I had my ferritin, VIT D and full blood test (expect Thyroid) done last week at my GP practice and they are being extremely safe with masks etc and taking temperatures.
Thanks Lindsayf. Unfortunately my GP is useless [and that is the 'good one' in the practice - you should see the others!] which is why I am in this situation and trying to DIY it. My ferritin has been low for years now and no GP, including those in my former practice, ever picked it up - they were more worried about my high Vit B 12 result, which happened because I was supplementing with B12 when the blood draw was taken. I will try and ring but my experience of that is that you don't get to speak to a particular GP - just whoever happens to phone back, but that might have changed since the Covid situation and you might be able to make a phone appointment with a particular GP.
I had a useless GP and decided to leave his practice. Fingers crossed that when the reception ask why you want an appointment they will also be concerned that you are breathless and feel ill. If they refused to do a blood test then can you find another surgery or buy an online blood test? I’ve used blue horizon before and there are others that will test for iron etc. I hope you get something sorted soon. By having an up to date blood test you, and with the help of the forum, may be able to pick it apart and get some help.
Thanks Lindsayf. I have decided to write a letter to my GP, incorporating a lot of the info from this post and replies members have provided. That way, on an issue as important as this, it will be there on my record in black and white asking for it to be addressed and in specifics as opposed to some vague telephone conversation with A. N other GP [who may be a locum] which will be forgotten as soon as the phone goes back on the cradle. A letter might get better results, failing that are there self test kits for iron where you can do it by fingerprick or does it need a blood draw?
Don’t be afraid to chase the GP. At the end of the day they are there to provide us with a service. I know there are some awful GPs out there but there are also a few good ones. Yes you can buy a finger prick blood test. Blue horizon do one, I think it’s called thyroid 11, if I remember correctly. It does thyroid, iron and some other. Have a look. You can also get your VIT D tested. I think I used better you for my VIT D and medi checks also offer private tests. If you search on the forum you will find lots of post about private bloods. You can then post your results and the amazing people on here will do as much as they can to give advice. We are not doctors on here but have all been through our own battles and can help each other. I’ve learn so much from here and that’s how I managed to fight my doctor for a referral to the Endo department at my hospital and got T3
Yes, Lindsayf, after your post I did a bit of googling and you can do an iron test with a fingerprick which seems to do a full iron panel - I will try the GP first though, but really with the blood numbers my tests came back with last year I shouldn't have been left sitting getting infinitely worse for a year and still have it undealt with - that is how bad they are! You are so lucky that you got your referral and doubly luck that you got the T3 - how are you finding the T3?
You need to request that GP to full iron panel test for anaemia with such low ferritin
Essential to regularly retest vitamin D, folate and B12 too
When you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Sorry DlowDragon, meant to ask, what exactly should I be asking GP for re the ID anaemia as she was confused when I raised this issue a year ago - is it full blood count and full iron panel and what tests precisely should be done for a full iron panel? Thanks
I can't add much, except that apparently B12 shouldn't be taken on its own as you need a balance of B vitamins. But if you are taking a B complex with biotin it's best to leave it off for about a week before you have a blood test as biotin can affect results (at least of thyroid hormones).
SeasideSusie , I think you are the expert on this.
Hidden is correct that you should take a B complex when taking B12 as this keeps all the B vitamins balanced.
As for your other results, they are twelve months old and it's not a good idea to base suggestions on results that old other than to repeat the tests and come back with new results.
I'll try to get the GP to do bloods - but see reply above to Lindsayf - no guarantees of what is possible as sadly my surgery is useless. If I can I will come back with results. In the meantime should I order a B complex and take it [subject to the advice re stopping it before the test to avoid the biotin skewing the results]?
what exactly should I be asking GP for re the ID anaemia as she was confused when I raised this issue a year ago - is it full blood count and full iron panel and what tests precisely should be done for a full iron panel?
An panel will include Ferritin, Serum Iron, TIBC (total iron binding capacity) and Saturation percentage.
The NICE Clinical Knowledge Summary about iron deficiency anaemia might also help:
I will order the B complex. Thanks for the advice re the IDA tests - this was why I asked because last year the tests my GP did included Ferritin, Serum Iron, and Saturation percentage but didn't include TIBC (total iron binding capacity) and yet from much of what I have read it is TIBC which can be the real clue as to what is going on and I don't understand why she would have ordered the other iron tests but not TIBC. I will ask her to do all these. when I get results do I come back to this thread or do I start a new one?
I definitely think you should try the methylated B complex. It was possibly the most important addition for me, after B12 and magnesium. I started the T3 after taking all vits/minerals advised on here for many months, as I was in such a poor physical state. I too have always had very low iron, but in my case, taking iron tablets caused terrible gut issues, as did vit D in tablet form...I have thankfully been saved by Better You sprays, and the occasional addition of liver to my diet.
It has taken me the longest time to rectify and 'normalise?' the B vitamins, and is somewhat still ongoing. I also had very low cortisol, and after trying assorted adrenal supplements [which didn't seem to help me at all] I discovered I needed B5 for adrenals and B1 for ongoing neurological issues, despite seemingly having addressed the B deficiencies with 2 years of supplementing with a methyl complex. I studied each niggling symptom, and eventually had the lightbulb moment, thanks to links on here.
Of course this is not much help to you as we're all so different despite the common thyroid factor, but I just wanted to emphasise how complicated the whole thing is when you've been hypo for so long...all manner of things can happen, and when we're forced into self treating, we're then left on our own to sort out any problems we may encounter. But you have managed to get this far and have done really well, so don't despair...you will find the answers as you go along, and it will all fall into place.
Perhaps staying on a T3 dose that works for you at the minute is best, until you feel other results are more optimal. Or, if you still have a semblance of a thyroid operating, [mine has had no output for decades] maybe you'll find you won't need that much more T3 anyway. At least when you're supplementing, it's much easier to hang onto vitamins and minerals when you have thyroid hormone circulating!
It can take a long time to be completely free of symptoms [if we ever really are] and it was only earlier this year that I noticed I hadn't been sitting on a pile of pillows and yet I had no pain on my underside or back! After years on high dose T3! Things gradually improve, and sometimes you don't even notice. Looking through my old diaries is like reading horror😳stories and knowing more about my condition now, I wonder how on earth I survived! Of course setbacks can occur due to the complex issues caused, but at least you're on the right track now, and things can only get better. Good luck with the complex/iron🍀
PS. Apologies if you've sent me a pm, I've been locked out of private messages and profiles now! Apparently this is due once again to updates on the site, which is very annoying, especially when you can see the little orange alerts, but can't respond, or even find out who it is! x
Hello Mamapea1! Very good to hear from you and hope that you are still covid free!! Thanks for this advice and support as there are so may parallels between what you have been through and what is happening in my own situation. For example, I have had exactly what you describe "sitting on a pile of pillows because of pain on underside or back". My GP diagnosed 'coccydynia' (tailbone pain), offered no treatment and made no link at all to thyroid, and yet I saw references to it here by others and miracle of miracles it went away about midway through my T3 journey. To think how it could have worsened if I had just done nothing. My T3 level will also fluctuate further when I begin progesterone therapy [provided it ever arrives! bit like the old T3 saga] but I won't mind that as it will be a consequence of my body getting something else it needs.
As you rightly say everyone's individual picture is very complex and, in my case, sometimes all you can do is "trial" something to see if it will help, but I am convinced that there is some iron thing going on and I have a feeling my GP doesn't have the confidence to deal with it, hence her suggestion that the endo would 'deal with it' last summer and sadly he didn't. I think what I am going to do is put all this in a letter to her and then she will have to come back to me, I hope, with a plan of what will happen, rather than me telephoning the practice. But - huge quandary - do I admit that I am self treating with T3?
I am thinking of trying the Igennus B complex - can I ask you how much B5 you ended up taking for the adrenals and did you do that as a standalone supp or was what you got in a B complex enough for that?
Sorry to hear that you are still locked out of private messages [I had sent one] hopefully that will get fixed for you soon - have you contacted admins to outline the problems you are having?
Stay well Mamapea1 and thanks as always for the advice. All the best.
Yes thank you Redlester I'm still covid free, as far as I know. I take so much vitamin C it probably wouldn't stand much of a chance...hopefully. Yes you're lucky that you lost that pain on the underside thing because mine continued and worsened for years until every part of my body was painful with any kind of pressure at all. Even my clothes hurt. It was difficult and impossible to explain to Drs, and meant my sleep was so disturbed. This is how I got the name mamapea, because the kids used to say I was like the princess and the pea, with my big pile of cushions, yet I was still uncomfortable, and felt like I was sitting or lying on a pile of broken bricks. I was overcome with joy when I read Dr Lowe giving an account about the whole thing...what a relief to know somebody knew what it was...I cried. It improved quite quickly on the T3, but didn't go completely until quite recently.
The progesterone is another good idea. I did try some cream, but I think I needed something stronger, or it may have been that other things were still out of synch at the time. Anyway, I still haven't sorted that out yet. I hope you get some good effect from it...let me know how it goes as I have reason to think I may need it too.
I had read a lot on the Dr Gominak site, [B5] and on hormonesmatter.com [B1] and in the Dr Lowe bible😊 and added the extra B5 and B1 separately as I'd been taking a complex for 2 years and high dose B12, but still had assorted symptoms. I was fortunate that I managed work it out, but it's exhausting reading through it all, and wondering if you're doing the right thing. I had started out with a serious B12 deficiency, and my folate had been below range for decades, but unbelievably, not one Dr had mentioned it, so I'd rather keep reading and sorting myself out...it's safer!
If I were you at this stage, I would just start the Igennus B complex and see how it goes for now, and see if you can manage a to take some iron. It's also amazing what a difference the magnesium can make when you're hypo...it really helps. I'm hoping my own ferritin level has gone up now I'm not hypo and I'm taking relatively small amounts of iron in diet and spray, but haven't tested it for a while. I find too much at once for me makes me feel very sick for some reason...been the same my whole life...another one to solve! I can't advise about whether you should tell the GP about the T3...it would be best to in an ideal world, but I have the same dilemma, and it depends what reaction you think you may get. An understanding private endo would probably be more receptive to the idea, but it costs, as does all the Medichecks, but decent Drs are a rarity here, and I don't want to be ill! I hope yours is more knowledgeable and understanding, and they respond well to your letter and sort out your test...it's really the least they could do. x
Hello Mamapea1 - so that explains the monicker!! I always wondered about that! Good choice, considering what you have been through. If your pain was so extensive then you have my full sympathy as mine was only really in the underside area, and that was bad enough and if I was to describe the horrendous things which went along with it and the examinations of those at the surgery and the "experimental" treatments which just made things worse - well, it might put you off your dinner! You telling me about "Dr Lowe giving an account about the whole thing...what a relief to know somebody knew what it was" further reinforces my belief that to self treat with T3 was the right thing to do, because sitting on a pillow was only giving me symptom relief, and it was only as I got further into the T3 journey that the pain went away [altho I'm still sitting on a pillow as a precaution LOL] and I am scared to think that I could have developed more extensive pain like you did if I had continued to go on untreated. I'm glad your pain has gone and hope it stays away. Do you still use a precautionary pillow??
Yes, I am upping my magnesium and finding that it is very helpful to the point where I don't think I could manage without it; my B complex is due to arrive tonight so I will start taking it tomorrow and my progesterone was ordered over 3 weeks ago and hasn't arrived and with every passing day my need for it increases. When it arrives I'll give it a go and let you know what I think. I really hope it helps me.
I know it is very expensive, but I am wondering would it be worth my trying to get hold of a copy of the Lowe Bible? or is it too technical for a lay person ?
So sorry Mamapea but this is all I can manage by way of reply for now - brain and body just don't seem to be able to wake up today and am fighting urge to go back to bed - will repost again later. RLx
My Igennus b complex arrived and I have started on one tablet per day one the premise that I should start low as opposed to going into over methylation too soon and causing even worse symptoms which I have read can happen. I was thinking of doing that for a week - see what happens and if I feel the need then go up to 2 per day as the bottle advises and see what happens. However, I am finding that at present my body just cannot seem to hold on to any iron at all and I am wondering whether I should just accelerate my plan to go to 2 per day. I am eating red meat every day and I don't seem to be getting enough iron even from that. I don't know whether to take iron supps in advance of a blood test but am thinking that soon I am going to have no option if I still want to be alive by the time the results of that come back. I am just exhausted and have a feeling of pressure behind my eyes -which I have since learned is an IDA symptom. Did I read you correctly, are you able to take iron via a spray? and if so can you send me a link to that? as if that would be possible then it would help me bypass any absorption issues I am likely having with my digestive system.
That is interesting about the extra B5 and B1 - can I ask you what extra amts you added? I think I have a cortisol problem but mine seems to be low in the morning and high at night - like a reversal. Really wish I could send you a PM - am going to try and see whether you can get it or not.
I'm so sorry I haven't got back to you in a timely manner, and no, I still can't read/send PM's😥 Not sure what to do about the whole forum thing, it seems crazy to have to download an app, or upgrade the iPad, which I can't afford to do anyway at present. I'll find a way to sort it and contact you.
Well I'm glad you've started on the B complex. Is it the one that has 25mg of everything but with extra folate? I've forgotten. I was on a complex for 2 years before I discovered the pantothenic acid and thiamin thing. I would just carry on with the complex for now, and see how it goes. I eventually added 550mg of B5 and 200mg of B1 [2x100mg] but I don't take all this every day now, just occasionally in smaller amounts, although I could only find separate B5 in that amount...it's all a guessing game with the B's for me, but I know I needed them, because it worked!
The iron spray is by Better You. I buy locally but it's available on their site I'm sure. I seem to use so many of their sprays, but I find iron tablets impossible. I did take some liquid iron for a while, but much prefer the spray. Are you able to have liver occasionally? I used to eat it as a child, but stopped in my mid 20's as no one else seemed to want it. I suppose offal went out of fashion, and then I foolishly became vegetarian for ages, and I still find liver a bit difficult, although disguised with onions and bacon it's ok.
I know you did the right thing starting the T3, but it's not that easy to get yourself back into gear when you've been deprived for so long. It is possible though, so don't worry, I too had setbacks. How much are you taking now? If you've had to reduce until things get balanced, it doesn't matter...you didn't have any before!
As for the Dr Lowe bible, if you find a cheap enough copy I think it is worth it, although it is a bit technical but useful for dipping into. Definitely not bedtime reading, especially with brain fog. I heard somewhere there were smaller books of his work, but I haven't actually seen them. Paul Robinson on here has some very useful info/links on his site.
I had the eye pressure thing too, but I also had daily migraines so it was difficult to know what was causing what...it's a minefield. Try the iron spray and see if it helps...your levels are very low. Will you be able get it tested by the GP soon do you think? If not, you may as well just start it yourself.
I had very low cortisol, and it is a problem that can take time to sort. I'd like to do another test for that to see where I am now, but it's all money. What I'd really like is comprehensive DNA tests to see where my problems lie... MTHFR, DIO1 and 2, and everything...I'll probably do that next. Sorry I'm not much help, but I hope you'll soon feel better, and also that you've been able to spend some quality time with your family at last! x
I'm so sorry to hear that you are still having Ipad trouble - is there no one who can assist without you needing to spend money on it?? Hopefully someone will be able to help. I have sent you a PM anyway and hopefully it will still be there when you do get back to being able to see PMs.
I have news since we last posted - my progesterone cream arrived this morning!!! I was overjoyed and gave myself my first dose. Too soon to say what it is doing but nothing bad so far which is good news. But I will need to watch my T3 dose as the progesterone gets into my system my T3 may need to go down again - I'm currently on 50mcg. And last night I was so fatigued - as in "i'm in danger of passing out here" fatigued - I just thought "stuff this" and automatically went up to a second tablet of the B complex - It is Igennus Super B so it isn't the one you might be thinking of - there are varied amounts of the B's in it but it is the methylated folate one with 400mg of folate over 2 tablets and supposedly the perfect amounts of folate and B12 to deal with MTHFR. The second tablet doesn't seem to have done any harm so maybe 2 per day is the right way to go for me for now and at some point I may need to taper down to 1 tab per day. I used to take 100mg of B1 and B2 separately every day for a long time but stopped for some reason [shame my useless brain can't remember why] and Isabella Wentz talks about B2 being important so I am going to have to look into that as this complex only gives a very small amount of B2 but that amount of B5 you were taking seems very high - was that a typo or was it really 550mg?
I found the Better You iron spray online last night - I was also thinking of something like spatone which is supposed to be more gentle on the digestion but I like the idea of the spray as it would be absorbed sublingually and bypass my likely woeful digestive system. Until you mentioned it I had never come across the idea that iron could be supplemented sublingually so thanks for that great tip. I still haven't written the letter to the GP yet -vicious circle you would need 1. energy and 2. semi-functioning brain to do that and make a decent case and I have neither at present!! so it will then take time for her to read it, order the test and then have the results come back and for me to receive them so that would be a considerable wait before I could take iron supps. I detest liver sadly and the only way I can eat it is via pate.
I think you can get a used copy of John Lowe's bible on amazon for about £120.00 and there is also a smaller version of a book he co wrote with his wife about metabolism I think [I'll try to find a link]. I'm a bit obsessed by the whole MTHFR thing at the moment and am also thinking of getting tested but that and possib COMT is all I want to know about - I am wary of opening a whole can of worms and finding out other stuff I maybe couldn't do anything about which would just upset me. Hard to know what to do isn't it?
Will hopefully have my mum and Dad into the back garden at some point next week if the weather is nice - she is still shielding so can't come inside - would be lovely to see them. Hope you are also having quality time with your family and that the garden is doing well! Have a lovely weekend
I've largely given up with the whole tech thing...absolutely fed up with it! The ancient iPad seems to work fine for everything else except this forum...[not that I do anything space-age with it]😂 No, it wasn't a typo...it was 550mg of pantothenic acid, and it turned out I needed every mg of it. It was actually the only dosage I could find, and I try to buy locally when I can, as I live in fear of losing the only decent health shop we have. I buy lots of stuff there, and it's close by. They order things in for me too, if possible. I didn't take any B's separately until I'd taken the complex for 2 years, and I was fairly sure that folate and the 'little B's' were as 'OK' as possible. I had bought a high dose methyl folate [1000mcg] initially, but it made me feel ill...I can only imagine it was a shock to the system after being deficient for so long, or maybe other things were out then. I ended up just going slow with the daily complex, [which had 250mcg of both folate and B12] and then cutting the others in half and taking once a week. But after all this, although I felt much better, and folate/active B12 levels were good [I have to take loads of B12] a few symptoms returned...burning feet at night, etc. and other slight neurological issues, so after reading the connections with B5 and B1, I started on those, one at a time, and I really noticed the difference. It was miraculous, so I was lucky that I'd got it right. It's a lot of trial and error though, isn't it? I don't need to take them daily now, but I can tell if I'm getting low. I think the B5 was a great help to my flagging adrenals x
Awww shame about the ipad not working for the forum. That dose of 1000mg of methyl folate might have been doing some sort of "detoxing" thing (I know what I am trying to say but not expressing it too well) too quickly - what I have read about the methyl is that you need to go low and slow - which is why it might have made you feel sick at that dosage - you were probably stirring stuff up faster than your body could metabolise it. My 2 tabs - and I do seem to need 2 at this stage - taken at separate times of the day give me 400mg of quatrefolic and 900ug of vitamin B12 and so far I am not feeling any unpleasant side effects. So that wasn't a typo - it was 550mg of B5. I will have to park that to one side for now until I get all the B's fired up to appropriate levels but I have had those burning feet - they come and go - and my poor mum has them too.
Sorry Redlester, I've only just noticed this reply, going through my emails😳 I hope you're feeling a bit better this week, and feel like you're moving forward with things. It's so annoying being unable to pm!
Yes, it was too much folate, but that's what I was advised to take...I think we have to play it by ear for ourselves. The B5 protocol that I was following, was only for those who still had certain symptoms after 2 years on a B complex, which I had. I fitted the list perfectly. The dosage was for 400mg of B5, but I could only find 550mg at the time. However, it did say that a higher dose may be needed for those who had had deficiencies for a long time, [obviously me] so I took the 550mg and it worked a treat.
Drs say you're unlikely to be B5 deficient as its in so many foods, but as I was absorbing absolutely nothing from my food, had no functioning peristalsis and could barely eat, I guess I became deficient in everything. There clearly wasn't enough B5 or B1 in the complex for me. Let me know how it's all going if you feel up to it. x
Oh Mamapea1 you must have been in an incredibly bad way if you had no functioning peristalsis and could barely eat (I certainly don't have that problem) - was that something to do with your migratory motor complex do you think? [I came across that in sibo research] That was definitely a high dose of B5 but you obviously needed it. I was taking the 2 doses of the Igennus super B - but at around the time I introduced the progresterone cream and everything went haywire for a bit I took out the second dose and am just taking one tab per day for the time being with a view to trying to go up to 2 tabs per day as they recommend maybe in about 10 days time. But as you will see in another post to you I seem to be struggling with low blood sugar at the moment so it kind of feels like nothing is helping - or I'm not doing things correctly. Trying not to panic too much but don't want to end up with diabetes!!!
I think the non functioning peristalsis was all to do with a total lack of T3, as it was rectified when I got up to 75/100 mcg. I'd had a constipation problem all my life, but once my thyroid had no output at all and I was on T4, all muscular movement stopped...it was horrendous. my food couldn't go anywhere, and would be regurgitated. Magnesium citrate helped the constipation, but I really needed that T3! I can't go lower than 100mcg for long before it comes back either. Try not to get too stressed re the diabetes, ...hopefully I'll be able to pm soon! x
Oh Mamapea1 that sounds horrendous - what you have been through - I can kind of imagine a bit what that must have been like as back in the day when I trusted my former GP [when knowing what I know now I wish I hadn't] I took his prescription for stomach acid blockers - 2 kinds of them - and found that I could eat breakfast, which didn't digest (because the medication had hoovered up what little I had left of my own stomach acid) but couldn't manage anything else so no meals for the rest of the day. when I described to him what had happened he gave me the "really? you must be imagining it" look . Well, it would stand to reason (in his mind) that if what I was saying was actually happening then he was wrong, and as that couldn't possibly be the case, I must have imagined it. But it's not the same as what you went through - the regurgitation must have been awful. Yes- the absence of the T3 would be the cause of the peristalsis problem (according to Hugh's book) . I have found that the T3 has improved things greatly for me elimination wise too. After 3 weeks of being half a tablet down I went up by a quarter of a tablet again today and I felt the better for it - clearly dropping by half a tablet to allow for the progesterone's introduction was too much and I have prob been undermedicated for the last 3 weeks or so. I'll monitor things for the next 2 weeks and if possible [and the progesterone allows] I will add in another quarter tablet then and see how I get on with that. Off to look for some vitamin E now. It is so hard to keep everything stocked up!!! Hope you are well.
Hi Redlester! Apologies for late reply, something seems to happen every time I sit down to reply to you. Ah yes, I know that look from the Dr well! I'm sorry you succumbed to their limilted knowledge and took the blockers...I did similar things so many times. I must be a glutton for punishment. I didn't take those though, as I didn't suffer too badly, unless I leant forward...I don't think I had any stomach acid left!😳
I became used to the whole regurgitation thing in the end, although initially it made me wonder how those with anorexia or bulimia cope with it all. It wasn't too bad, no burning, not like being sick...it just came back up. It was the inability to eat normal meals that I found difficult, and the not going to the loo! The Dr advised that I needed more fibre, and despite me telling her I was already eating as much fruit and vegetable fibre that I could manage, she suggested that I try [wait for it] popcorn! I guess she was thinking there's not much bulk in it, apart from the fibre. As I quite liked popcorn [dont eat it now] I sat down with a packet and ended up in hospital the next day☹️ The pain was terrible...it had caused a serious blockage and I was there for days in agony taking increasing amounts of picolax in an effort to move it. Despite doing various tests and intrusive investigations, they were still scratching their heads about the absence of peristalsis. I think they must've thought I was anorexic...as soon as you mention regurgitation, and you're thin, and therefore don't look like their impression of a hypo person, that's it. You get passed around so many specialists for all the different 'conditions', and none of them have a clue. Alternatively, and perhaps worse, they come up with an idea of what it could be, according to their own specialism, and treat you for that, making you worse. I eventually discovered golden linseed, which helped a bit, and the omega 3 in it may have been beneficial, but the problem remained until I got to 100mcg of T3.
I haven't looked into it much, but I know that bile is important and plays a role in T4 - T3 conversion, and of course the absence of vitamins if it's low. You'd have thought GP's would've realised that. It must be horrible having gallbladder problems, I've known a few people who've had it, and they've said it was very painful and debilitating. I think the member Heloise knows a bit about it, if my memory's correct...although I wouldn't bank on that!😂
About the vitamin D, if you think you've had a good dose of sun, you maybe able to miss a dose. It depends how low your levels are. I tested mine quite often at first to establish what I need to take to keep my levels up. I believe you can get very large amounts in a whole sunny day, but even when I was very brown, my levels were still reading low and I think I may have a problem with VDR. Of course the browner you are/get, the less D you make. Getting tested a couple of times a year is the only way to establish what's happening really, and grassroots health.net [and others] seem to recommend a 'best outcome' level of 100 - 150nmol/L [40 -60ng/ml] but now you're on T3, things may have improved, as they did for me. They have suggested an amount of 7,000IU per day from all sources, [sun and supplements] to maintain levels, but it's hard to work out, as it's not good to go too high either. I know I like mine to be at least 100nmol/L, and I take at least 3,000IU oral spray daily, and spend as much time as possible in the sun, although I haven't tested for a while now, so I'll do that soon.
I'm glad you've been able to increase the T3 ~ I hope the progesterone is going ok. I only take vitamin A and E once or twice a week now...seems to be ok so far. I'm off out into the garden to continue the big clear up, there's so much to do, and I'm trying to make some big changes into the bargain...it seems to be an endless task, but enjoyable while the suns out☀️
Take care, speak soon [hopefully PM as I have loads to say] x
Hello Mamapea1! Great to hear from you and glad that you are well. I had a bit of that regurgitation you described, although it lessened after I copped on and stopped the omeprazole [acid blockers] but what you had was way worse. I am shaking my head at the "popcorn" suggestion. I used to love it and ate it but gradually realised it didn't love me so i can imagine the pain and the blockage you went through - nightmare - corn does not suit some people and we are obvs some of those people!! but how lax of a doctor to offer that lame suggestion. It kind of reminds me of the time when my Mum's GP advised my hypo mum who is of a tiny bird like physique that she was underweight and should eat things like scones with jam and cream in order to gain weight. My mum who does generally try to eat a nutritious diet was horrified - though it didn't, sadly, lessen her faith in the doctors. Hmnn!!!
GB still a nightmare - controlling every day - so i am just having to take it one day at a time and I am spending all my online time researching it. Must check out Heloise's profile to see if she mentions it. Theoretically both the T3 and the progesterone should help it but perhaps I am not there yet, so will just have to keep plugging away at it.
Thank you for the excellent advice re vitamin D. I had thought that once you had made a fair bit, you were good to not supplement for quite some time given the length of time it survives in the body, but given the lack of sunlight we have had here and the fact I am a bit brown so might not be making as much when there is sunshine I think I am going to have to begin supplementing again and would also need to test. My levels are nowhere near what you are quoting what I would need for thyroid functioning - it's a full time job this isn't it?? Can I ask, what did you mean when you said "I think I may have a problem with VDR"? (sorry, am a bit foggy brained today!)
The lunchtime news today was covering the covid "longhaulers" - people who had only had mild symptoms, but are still struggling 3 months later with what seems to be ME. They flashed up all the symptoms and I was saying "yep, I have that, and that , and that " . It would appear the poor critturs are left with post-covid ME but the NHS is gearing them up a Covid rehab programme - which I would imagine will be CBT and "pacing". God help them.
I had planned to do some gardening today but seem to be getting waves of fatigue (which i wasn't getting yesterday) so might have to make it low key - so frustrating not being able to tackle all the jobs you want to do!! Don't be overdoing it at your end much though you might have a lot to tackle. Does this mean your tech probs have been sorted and that you can PM again??? Hope so - can't wait to hear the news.
Vitamin D Receptor gene😊 I sometimes wonder if I am genetically in possession of functioning receptors of any kind!😂 I intend to have a full gene test at some point to see what I'm up against. Wish I'd done it before the virus madness hit though... I'll reply properly soon, I'm snowed under with jobs ATM! I'll let you know immediately if I ever sort the tech problems! x
Ah - yet again I have learned something new - vitamin D receptor gene - what makes you think there is a problem with the VDR??? is it because even tho you take full advantage of what sunshine you have available to you, you still don't have the vit d levels in your body you would expect to have?? And yes - I know what you mean re other receptors too - f it wasn't so serious it would be funny
Me too re jobs ATM - all of them big ones w too much time spent hunched over laptop - still haven't got tomatoes transplanted - they have been on to do list for last 3 weeks now - at this rate of going summer will be over before it happens!!!
Unfortunately not Marz😕 I know...I'm hopeless! I'll let you know as soon as I can though. I really miss chatting, especially in these weird and horrible times...
I'm still thinking of getting a hut in the woods!🌳🏡🌲 xx
I know what you mean - the way I am living at the moment it feels like I am living on an island with the TV/Laptop/phone the only connection to the outside world. Might be more fun in a hut in the woods!!!
Hi Redlester! I hope you realised my earlier garbled message was to both you and Marz, although it's probably too garbled to make any sense of😂 I was being lazy and trying address you both at once. I'm like you with the outside world. It's all getting me down and I'm fed up with it...I think the TV might follow the iPad out the window soon too! I have been out a bit but you never know what's going to happen next. My daughter and partner have gone back to Brighton now, so the house seems really quiet. I'm missing all the lovely Indian food she was cooking for me😋 I hope you're managing the balancing of the T3 and progesterone and it's all working out now. Let me know how it's going when you get a chance. x
Hello Mamapea1. Good to hear from you - was wondering if you were ok as you were so quiet! You'll be needing a glazier then if you toss the TV through the window, but I can empathise with your frustration [see my other post re the laptop]. I am trying to walk each day, but people don't social distance and the [most likely asymptomatic and therefore virus shedding] joggers huff and puff right up your face, apart from that I go to shops only when abs necessary and that is the extent of my venturing out. I look at the people hitting the ice cream and coffee shops and bars and just cannot get my head around the fact that they are setting themselves up to get the Covid - and then maybe I think I am overthinking things too much, but I couldn't risk getting it [again? if I had it last year] as I don't think I'd survive it. Sorry to hear your daughter has gone - you will miss her and I am sure the house does seem awfully quiet without her.
Right, I am touching wood here as I am scared to write this and almost jinx myself, but I do finally seem to have found a T3/progesterone cream balance. Yaaaayyyy!!!Last Monday was horrendous - so much GB pain I was thinking "if this keeps up I am going to have to go to A+E" [though fat lot of good that would do me]. And then, by some sort of miracle, the next day everything sort of "settled" and it was as if it had taken to that point for the progesterone cream to finally kick in. I have upped my magnesium dosage, have finally been able to add in melatonin which I had been trying off and on for ages with no success (maybe it needed to progesterone cream? who knows?) so am sleeping much better, I have gone back on the D3/k2 [summer's not happening] and it was as if in the middle of last week my body just "relaxed". Only took 20 years, sadly. But, hey - the constant abdominal pain has gone, and I have managed to take myself off the ox bile sups I needed with every meal to digest fats. Proof therefore that all along it was thyroid hormone and progesterone deficiency which were causing the GB trouble. I'm almost afraid to alter the current formulation but am about to try something new - mind you I might hold off for a week or so otherwise I won't know what's going on. I'd also love to know what is going on with my iron levels as I still haven't got a test done yet, and iron apparently is all tied in with both hypo and vit D levels. I am however very confused re the position on phytoestrogens - turns out I was eating a lot of them which can actually block progesterone - some of them seem to help with the progesterone and others block it. So you read one site which says "eat this" and then you read another which tells you to avoid it, and between avoiding the things which inhibit iron absorption and avoiding the bad phytoestrogens - thyme for example, I am having to make a lot of dietary tweaks and there is a vast amount of indecision in the kitchen at mealtimes. So confusing for my struggling brain. so, laptop permitting, I a just researching, researching, researching. And then there is the visa credit card business so I can place the T3 order - tell you more when we can talk more freely.
I'm so glad to hear you're feeling better now...long may it last! It sure can be such a mission to get things balanced. You've done so well. I'm feeling ok too, apart from my obviously delusional behaviour re trying to send Marz my details!😂 Look forward to chatting soon x
the sooner the better - going to take us ages to catch up and then still so much to discuss!!! Glad you are doing well - keep doing what you are doing - it is obviously working. Just wish we had better weather here - no heatwaves for us - just endless rain. My flowers are all drooped over with it. Xx
Hey you guys! 😊 I'm still here ... ........! read the first 3 words in the voice of sloth from the Goonies, just for amusement, and the next three in the voice of Steve McQueen in Papillon [please add the next 2 yourself, as they're not allowed on here] as he floats away on his coconut sack💦and know that I address it not to you two, but to all the dishonest people in the world today😔
This first garbled sentence probably gives you a rough idea of my state of mind at present😳 What in Gods name is going on?? I am at the end of the line with all this, and I think I'm slowly going bonkers! I'm glad to hear about the sat nav Marz...I was thinking of leaving you a Hansel and Gretal type trail, maybe in face masks...oh no wait...you'd never find your way...they're already all over the floor!😂
I hope you're both well and surviving this nightmare...I still haven't sorted out the forum issues. I seem to find myself down so many rabbit holes of Internet stuff, that I then get such mental fatigue and stress that I have to sit in the garden to recuperate...I haven't yet decided whether to buy a new iPad or throw this one out of the window and call it a day. It's certainly infuriating not to be able to pm on here...especially atm. The stupid iPad is fine for everything else! Take care both of you...back soon if I ever get off this sack! 💐 💐 x x
I thought of that myself Marz, but I thought it too risky, especially in these dark times....I'll be in touch with my details the old fashioned way, if you know what I mean😊 I should've done it before....x
and to me also Mamapea1- as you have my snail mail address and then we could just email directly!!
Have you been on the grog mamapea??? I'm still chucking at your post. I know what you mean with tech trouble - I have spent the last 2 days trying to fix my laptop after getting blue screen of death 2 days in a row. It got to the point where I could barely bring myself to switch it on because I couldn't face the prospect of getting another one. Are there any good ipad deals out there at the moment?? with all this online everything happening because of covid it might be a good time to get a cheap one?
and lucky you able to sit in the garden - the way the weather here is if you get geared up to sit in the garden it begins to rain just as your backside hits the chair [v autumnal - leaves down etc - saw a conker yesterday on 2 August] and then there are all the men out with their power tools.
And have you heard the latest ?- all over 50s to be kept indoors to counteract second wave. Are we the victims of the biggest con re govt control the world has ever seen??? or is my brain just so addled with all the daily bombardment of covid covid covid that I cannot work out the difference between fact and fiction. Last night on the TV the local public service advert had changed from "protect your environment - pick up your dog mess" to "protect your environment - pick up your PPE - don't leave your face mask lying on the ground". It beggars belief.
Look after yourself - keep gardening! and try to stay in touch however you manage to do it!
Yes, I have resigned myself to contact you both via snail mail, although I don't have much faith in that either atm! They recently managed to lose an important letter of mine and it caused so much hassle. Unless, like a card I once sent you, it really IS going by actual snail!🐌
Yet another one was lost by my local council...I posted it through the door into a large collection box. The place was closed due to covid🙄but a notice said mail was collected daily, so I posted it by hand as I didn't want a repeat performance with the PO. Also the socially distanced and fully-masked queue at the PO went down the whole street to obtain a recorded delivery😷
Then I received a letter saying they hadn't received it! When I questioned it, they EVENTUALLY confessed that the box is emptied each day, but because the office is closed, the mail is distributed between the homes of the staff, as they're all working from home. "It must have got lost in somebody's house" they said. "But we won't be able to find out whose"😳 It seems to be perfectly acceptable these days for your personal details and correspondence to be floating about and getting lost in someone's house!
It might be safer by snail🤔 x
PS your brain is not as addled as you think👍🏼 we'll save that for later. x
I know, its infuritating isn't it? you do everything in your power [hand delivery] to jump through their hoops and then they go and cock it up for you - bit like my recent struggles with the local council to get my bin emptied when the bin men hadn't bothered to do it the first time. Arrgghhh. Had to walk back and forward with refuse for black bin between my house and bin collection point where I had to leave it for almost 2 weeks. And then there is the visa card hoo hah. If I wasn't already losing more hair than I can afford to it would make your hair fall out. Despite your reservations doing a post by snail mail might be the only way to circumvent the ipad problems and lack of PM'ing for you at the moment. I tell you one thing - in years to come when some other poor soul looking on the forum for info about ferritin and folate comes across this thread they are going to have a good laugh reading it!!!
Oh no! I can't see it! I must've done something stupid. I was very stressed at the time of sending. I'll ask Marz if she would be so kind as to pm it to you Redlester. I'm so sorry. Hopefully speak soon. x
PS Marz will no doubt laugh when she reads this😬 I'll explain later.
oh the relief !!! I was worried that things were not all right at your end - I can re-send it to you if you want. But hope everything is ok with you and that whatever was the cause of the stress has turned out ok. xx
Hello Mamapea1 Not sure if you are still able to use the PMs at the moment so have had to revert to ferrtin folate etc. Hope you are ok - just a quick post to let you know that I hit the magic 50mcg - no more fiddling about with quarters of tablets for a while. My body was crying out for the increase but i was afraid to try in case I went hypo but so far so good. Did you ever try to email me direct? just wondering because if so, it didn't reach me. Must be something very odd going on somewhere.
xx
PS - love the new word coined yesterday - Covidiots!!!
"93 percent of the hormone produced by the thyroid is inactive T4 until it is activated mainly in the liver by an enzyme. Cortisol directly inhibits this enzyme (5’-deiodinase) which converts inactive T4 into active T3. This in part can lead to low T3 levels. In addition, elevated cortisol will cause thyroid hormone receptor insensitivity meaning that even if T3 levels are adequate, they may not be able to bind normally to receptor sites. Cortisol will also increase the production of reverse T3 which is inactive and it binds to T3 receptors blocking them from normal function."
so it would seem it is cortisol levels and in turn adrenal dysfunction which are driving thyroid hormone resistance
Yes adrenals/cortisol levels most definitely play their part, especially when you consider how many of us become ill after 'stress', but there are so many things going on, it's sometimes difficult to know where to start to put things right. I think high and low levels can both cause problems, and everything is connected. If cortisol levels have been high during periods of stress, then perhaps that's where it all began...then comes the low phase to slow the body down for preservation...then we have to get out of that! It seems any sort of physiological stress can affect conversion or/and absorption. If there are also genetic factors to consider, then I guess that makes it all the more difficult😕
I was definitely severely affected by both the physical effects of the vax, and then later on, the emotional effects of the stressful period, and then menopause was the tin hat! I honestly believe if I'd been able to address each problem properly [without GP's input] as it came along, I would've been ok. I wouldn't have had the vax that started it [I was bullied into it] however having done that, I would have taken a large dose of thiamin etc. and started T4/T3 combo or NDT or just T3, [instead of spending 25 years on large doses of Levo and getting sicker...my RT3 level must've been off the chart!] and I would've checked my vitamin and cortisol levels, although I may not have even had the whole breakdown thing if I hadn't been so hypo. At the menopause, I would've taken some progesterone, which various Drs admitted I needed, 'in an ideal world'😳 but of course I knew nothing about any of it, and stupidly trusted the 'specialists'...you live and learn.
I'm glad you've got the progesterone and I really hope it helps...I still haven't sorted my order yet... my daughters' hashis has been playing on my mind of late, and has become something else to sort out before she disappears back to uni again. I hope she doesn't share any of my weird genetic traits that make conventional treatment useless, although I have a bad feeling about it. Let me know how it's going and I'll let you know if I'm ever able to pm again! x
please do indeed let me know if you get your pm facility back as there is much one can say in a pm which one cannot on a public forum. Would have replied earlier in week but progesterone cream arrived and suffice to say it has been a bit of a week - close to just about the worst week of my life. By about day 2 of application of the cream the estrogen dominance wake up crisis began and I was like a zombie - mogadon woman - I had the thickest fullest feeling head - the way your head feels when you have a bug - and zero energy - I could just about make 3 meals, get myself up and put myself to bed and that was a struggle. I knew something wasn't right and was desperately searching online and barely able to read let alone retain stuff - I'm still struggling - but on Friday morning as I was due to take my T3 dose a lightbulb sort of flashed on and I thought "what if I don't take it - by way of experiment to see if it is driving this awfulness". So no T3 dose, and when I woke up I'm not saying everything was wonderful but my head was much clearer and I did some more research and looked at my last set of blood tests [including Oe and Pro values which my GP had decreed to be 'completely normal ' and just what she would expect for that point in my cycle] and the penny dropped. "In premenopausal females, normal estradiol levels are 30 to 400 pg/ml. In postmenopausal females, normal estradiol levels are 0 to 30 pg/ml. In males, normal estradiol levels are 10 to 50 pg/ml." My estradiol level was 1839 - set against a progesterone level of 16.3 nmol/L - and bearing in mind that is a serum level which will not likely be available to the body because it will be bound by a protein ergo my "just above the threshold for normal" serum level would be progesterone deficiency if a salivary test had been done - which means when that blood test was taken (March 2019) I was suffering from horrendous estrogen dominance which in turn was causing hypothyroidism neither of which was picked up by my GP - my progesterone was being hijacked by cortisol also with implications for thyroid functioning so now that i had started to use progesterone cream, boost my progesterone levels and balance the estrogen my thryoid and cellular receptors must be starting to wake up meaning that the 50mg dose of T3 is too high. This morning I again didn't take my T3 dose to see what would happen and I was able to get up at 10.30am alert and able to function and wanting to do things. I wouldn't go so far as to describe myself as "energetic" but if you bear in mind that for the last 20 years I have struggled to get out of bed before midday because no matter how long I sleep it is just never enough 10.30am is an early start. I am livid that I with no medical training was able to logic this out for myself and that that GP couldn't read a simple blood test - I have obvs had 20 years of them being unable to order the right tests and then analyse them properly when the results come in which at the stroke of a pen or click of a mouse has condemned me to a non-life - indeed it is a miracle that 20 years on I am still here If that GP can't read those tests how many other patients does she have coming to her and her telling them their results are "normal" when they couldn't be any more ABNORMAL if they tried - perhaps for things like cancer??? She couldn't even read my iron test results. Are they not trained that all these hormones are linked and that problems with say estrogen or progesterone are going to cause a thyroid problem??? My advice Mamapea re your daughter you are worried about who might have hashis would be to not just look at thyroid hormones alone but also to do testing for estrogen and progesterone and salivry cortisol because if you just look at thyroid hormones you might miss a part of the puzzle. So many people's female hormones are now being mucked up by the bewildering amount of xenoestrogens out there in our food and environment which we can do very little about and are putting an awful burden on our bodies and these will in turn impact the thyroid. I read somewhere recently that Avocados are now considered to be a xenoestrogen . I used to eat them every day until I read that. And stress is a horrendous hormone disruptor. If I had known any of this 20 years ago things could have been so different. Thank God I found this site and began to work things out for myself. Imagine how much worse things could have become if not!! If you are interested in trying progesterone cream I have been looking at this brand Natpro - from this site aggressivehealthshop.com/ca...
I bought the cream I am currently using from a US supplier - you can't get it in the UK so far as I know - and it took ages to arrive so i'm thinking of trying this Natpro one as it seems to be a uk site.
My problem now is that I need to continue on with the progesterone cream (as I am seeing benefits now from upping my dose and things I hoped it would help with have imrpoved) so I don't know what to do with the T3 - obvs I can't go back on the 50mcg dose as that is now too high so tomorrow I am going to have to drop down - but by how much? and over the longer term will I gradually perhaps not need it at all (if there was a form of THR being driven by insuffient progesterone levels of which are now being increased)??
Don't worry...you'll be the first to know re PM's! It's very frustrating. Well you've given me food for thought here! I know my oestrogen dominance was bad, as I was told I 'ideally' needed progesterone, but of course I didn't get any, despite begging! The medical notes, however, that contained those results are apparently 'lost', along with all the other pertinent ones that I needed...in fact everything from when I was vaccine damaged and hospitalised. Strange that😕
I also know my prolactin level was ridiculously high. I will definitely get the daughter checked out for that too, because the first stupid GP put her on sertraline, saying she was 'just depressed', and it's known to raise prolactin levels.
I would hang on to the T3 for now, and not rush into anything, as you never know, but if it does turn out you don't need it, I'll buy it from you. I'm still waiting for an order that was shipped almost 5 weeks ago! I haven't run out though, so I'm ok and I'm sure it's on it's way. I definitely need mine, as my thyroid has no output at all, and I can't take anything else. Thanks for the link...I'm thinking it may be possible to reduce my dosage with the progesterone, although I do feel ok at the moment. Well I suppose time will tell with all this, I hope it all works out for you and you continue to feel better... stay in touch x
Mamapea1 - if ever I didn't have further need of T3 I wouldn't sell my supply to you - I'd just give it to you. I'm not sure what I have left and am equally not sure what to do re placing another order but think I am going to have to do so soon so as not to get caught out waiting for it to arrive if HK gets a second wave of covid and further lockdown -espec if it is a 5 week wait for delivery. Such a nightmare. If you are running low and need a box let me know. I doubt you will be able to reduce your T3 dosage with progesterone if your thyroid has no output - although if you do start progesterone you would need to keep an eye on it to see what happens. While the progesterone has helped massively with one particular symptom which was a classic hallmark of progesterone deficiency I am still struggling with the T3/progsterone dosage - I dropped T3 down from 50mcg to 37.5mcg [half a tablet] and don't know if I did the right thing or not. Struggling badly with fatigue of all kinds at the moment.
In your post you wrote "The medical notes, however, that contained those results are apparently 'lost', along with all the other pertinent ones that I needed...in fact everything from when I was vaccine damaged and hospitalised. Strange that" Yes - isn't that very odd - I couldn't agree more. They are all about notes and records and proper procedures and tests when it suits them aren't they? I asked my GP to test my thyroid binding globulin to check for estrogen dominance - she didn't have a clue what I was talking about (the test or the ED) but ordered the lab anyway. I went off all the supps for a week so as not to compromise the result - suffered dreadfully - the blood draw was done and when the results came back they had tested thyroid antibodies not TBG - the lab had obvs decided I didn't "need" that test done so decided not to do it and decided to pick a test of their choice to run. Were they present at the consultation between me and the GP??? And now I come to think of it my prolactin level was elevated but not off the charts - but my GP never mentioned it. I am convinced she doesn't understand any of this (was she not at the single lecture they got on endocrinology when at med school???)
I hope the daught isn't still on the sertraline because that won't solve anything - if she was suffering from depression it is more likely due to hormone imbalance but as the docs can't seem to get their heads round that they just prescribe anti-d's instead and leave the hormonal mess to get worse. You will have to keep educating her so that she doesn't suffer as we have done.
I'm sorry you're feeling so ill and fatigued...it's such a shame we end up flailing about with all these things on our own because we get no real help from our Drs. Appalling that your test was 'swapped',😳 but the lab had probably had orders from above not to do it, as happens now with T3 tests...another outrageous decision that can only serve to prevent/delay effective treatment and wellness. Doing your own tests is the only way round it, unfortunately.
No they don't seem to know anything about any of it, and if they do, they certainly don't share their knowledge with us. I'm just glad I worked out what was going on before they finished me off! It's so hard to work your way through all the research when you feel ill though, and seems so unfair.
The daughter was given the sertraline some years ago, and didn't stay on them for any time at all, much to the GP's disgust [no money for her] but even that short time caused changes [more when I can pm] and made no difference to how she was feeling mentally...and physically, she was worse. No tests were offered and as we know, antidepressants don't cure hypothyroidism😕
I hope you manage to unravel the whole progesterone thing, I haven't had a chance to look through all the stuff I had on the subject [I have put it on a back burner because I feel so much better now] although it sounds like you're doing quite well on that front, and there's lots to be found out by searching on here too. When my oestrogen levels naturally dropped pre menopause, I had a short window of feeling a bit better, but then it got worse than ever with the awful stress/PTSD adding to it all, and causing me to be back to square one.
I certainly wouldn't do away with the T3 yet, just give it some time and see how it all pans out...it's a complicated business! If you keep them in a cool place they'll be fine for some time after the expiry date. All is well re my supply at present thank you, although I'm still waiting for Mr postman, which always causes some anxiety these days...will it actually arrive, etc. and reading a post on here recently about a member being told [whilst in hospital] that they are actively working to prevent people from buying their own meds from abroad hasn't helped in quelling my fears. A scary statement for someone like me who can't afford to pay endless amounts for treatment, and can't take anything else...eek! I hope you'll be feeling better soon...there must be an answer to it all. xx
Did you get any joy yet with the post and your T3 order? Has it arrived??? How can they stop us buying our own meds abroad?? (I didn’t see that post). If so it would be equally scary for me as I struggle to buy what I need from abroad but it is better than nothing and better than anything my GP would be prepared to offer me [oh, the waste of hard earned tax payers money). I will have to keep going with the T3 for quite some time to come as I think that now I am on it I am going to be on it for good.
I’m glad your daughter didn’t stay on the sertraline for long but am sorry to hear that even the short period of time she was on it caused changes [deffo tell more when you can pm] but am not surprised that they made no difference to how she was feeling mentally.- particular if what she was feeling mentally was as a result of being hypo – isn’t it criminal that they won’t do the right tests for thyroid? and when they do they rely only on the TSH and use it as an excuse not to treat and yet they are happy to prescribe [wrongly I would suggest] the anti-d’s without any testing whatsoever. I know someone, sadly less enlightened, in the same situation, who is blindly accepting the anti-d’s and HRT and trusting the doctor [same GP as me] in the faith that the doctor knows what she is doing, but I daren’t say anything because it wouldn’t go down too well but it is hard to watch and say nothing.
I’m not doing great at the moment – flailing around a bit post the introduction of the progesterone cream which has helped with some things, but I seem to be suffering from blood sugar issues. I was fine when I was using it about 4-5 times per day but tried to reduce the doses down – and was ok on 4 doses for about 2 days and then when I went down to a morning dose and a bed time dose with just one further dose halfway in between I started to get fatigued and light headed which seems to be blood sugar. So I am struggling at the moment, but still trying to research, research, research with a foggy head which isn’t making things easy. Think I am going to have to add another dose back in and see if it changes anything and also need to order a salivary cortisol test to see what is going on with my adrenals. Really hate having to DIY all of this!!! Hope you are keeping well and are not joining the rush to the shops/pubs when they re-open. I look at it all on TV and just think “the virus is still out there and there are spikes of it occurring – why would you want to be mingling unnecessarily???” Madness. Stay well.
No sign of my order yet, and I have a feeling it's somewhere in the uk and has been for some time. I'm ok for now though, but I'd like to have them in my hand, as I can't do without them...it's all such an unnecessary worry caused by a cruel medical system that won't prescribe what you need to be well😕
Yes, I definitely think you're on the right track with the T3 as you had such great improvements when you started on it. Unfortunately I can't direct you to that post re stopping us buying our own meds as I can't search through my previous replies or profiles to find it. I find the whole thing very stressful...supply is always a constant worry for me. Pharma companies have such long tentacles...I'm sure they'll find a way to put a spanner in the works, but maybe we'll find a way round it🙏
I'm so sorry to hear that you're still struggling, I hope things change for you soon. Perhaps you could buy one of those blood sugar testing devices from the chemist? My daughter had one from the hospital when she developed gestational diabetes in her last pregnancy, and then I found out you could buy them OTC. Mine was always high...did the GP do a comprehensive blood test before? I had one and I can't recall the results, but it went unnoticed anyway like everything else😕 Maybe you have low blood pressure? I had that too!
It's horrible when you feel you can't advise friends because they don't believe or accept the advice you offer, but as you say, there nothing much you can do. A four point saliva test may show something with the adrenals, I hope you get to the bottom of it. It's so hard to research it all on your own. I realised recently that I wasn't following you, so I don't get a notification if you've posted, which is annoying as I can't get onto your profile to do it now.
I have loads of people staying here now as twin 1 has been been reunited with her partner [at last] and they're back, along with the others who have come for a family celebration...it's so hectic! I guess I've become used to life on my own of late! I'm not worrying about 'spikes' in numbers, etc. although I'm keeping away from vulnerable people, and I'm in no rush to go anywhere I don't need to go. I've totally given up with the nonsense on main stream media...I think the worlds gone mad!😳 x
Hi Redlester😊 I hope things are going ok your end and you're feeling a bit better...I've been wondering how you're getting on. My order arrived yesterday, thank goodness, with two packets to spare...what a relief! Tracking showed they had been in the UK for several weeks, as I suspected, but I'm just so glad to get that worry off my mind...I'm going to reorder again now if it's going to take that long!
I've been trying to send you some links, but iPad just blanks out the link when it arrives at the forum page☹️ So annoying! I haven't really had much time to concentrate on the tech issues, as this week has been so busy with family stuff...I've hardly been here. Anyway, I can't remember if you said you'd tried a gluten free diet, as I can't look back at our previous conversations, but if you haven't, I think it might be well worth a try. Apart from the gut/immune issues, there's a link to adrenal fatigue, and I definitely found avoiding gliadin enormously helpful...some problems are not rectified instantly, but over time I found great improvements, and I've got used to it now. If you haven't already, see kalishinstitute.com and read the blog GLUTEN INTOLERANCE: The Hidden Epidemic.
I hope you've been able to spend some time with your family and they're all well. The rainy weather we've had here is really getting me down, although we've tried to get out and about when there's been a glimpse of the sun. The garden though, is like a soggy jungle, and needs much attention, which it hasn't had because of rain and me staying at my daughters house😕 Hopefully the sun will be back soon and I can get out there! Stay in touch and let me know how you are. x
Hello Mamapea1 - you have sent me a couple of other posts on this which I have not yet read and apologise for not responding to but it has been an horrendous 7-10 days or so (see later). Great to hear your good news on all fronts 1. your order arrived - yay!! what a relief! and wonder what held it up at UK end?? so glad you had enough to tide you over but I am sure it was on your mind a lot of what would happen if it didn't [I could have sent you 2 boxes!!] I tried to do an order myself only to find that you need a visa credit card and all my cards are master card so I have to apply for a visa credit card and I was so brain fogged I got stalled at that point. 2. You are busy and out and about which must be lovely after all of the lockdown and staying at your daughter's house so hopefully everyone is spoiling you!. Restrictions are eased here but I am still being cautious - while I might want to be out and about I am trying not to and have worked out that the best time of day to go out for my walk is 10pm - no one jogging into your face huffing and puffing their asymptomatic breath all over you at zero social distancing!! People here are behaving now as if the virus doesn't exist. Don't worry about the garden - nature is very resilient and it will take care of itself for a while and you can lose yourself in taking care of it when things settle down again. Like you I really wish summer would come back as it is miserable here with the odd chink of sunlight.
Re the gluten - I was GF and dairy free for 3 years a while ago - it did nothing for me and I was vigilant about it and worked very hard at making all my own stuff as it was back before GF was a fad and the supermarkets stocked whole aisles of the stuff. I would only go GF again if I got a confirmed DX of hashis which I am still waiting for - ultrasound of thyroid ordered last aug and it still hasn't happened. But thank you very much for that link - I will check it out.
I am struggling to make sense of what is going on at my end - on a good day I can mentally join the dots, but the problem is I simply cannot remember anything and then find myself starting all over again. What it boils down to is that I am undergoing a fairly hellish menopause which just adds another layer of misery onto the 7 existing layers of misery I am coping with on a daily basis with my pre-existing conditions (I totted them up) and complicates everything. The introduction of the progesterone - while much needed - caused the problems which when I describe them were very scary [do I have diabetes? have I done the wrong thing??? etc etc etc]. There was obviously an estrogen dominance wake up crisis going on and I was struggling with the dosage on 2 counts: not using enough when really I should have been using more and afraid that my tube of cream would run our (have ordered more but won't be here for another 2 weeks at least - so rationing) and trying to walk a fine tightrope regarding the impact of the progesterone on my gallbladder as, while I couldn't have gone on the way I was, I don't want to make an already dicey situation worse. I was experiencing scary fatigue of a new type - a sort of pressure behind the eyes, light headed spacey type of fatigue and could do nothing - it did have a bit of a POTS-ish feel to it but it was more than that - I was worried it was a blood sugar problem caused by the introduction of the progesterone so I tweaked my regimen and added olive leaf extract before 2 of my main meals which has helped greatly, and then in a go for broke type effort I upped my Igennus B's to 2 per day [I was on one initially] and those 2 actions have helped things to stabilise - the spaciness has gone and my head is clearer. I read the big progesterone book [remember that link I sent you - I can re-send it if you are interested] and a lot of things became clearer, and I felt better when I read that I was doing all the right things supps and phytoestrogens wise and that as it had taken considerable time for my body to get into this mess it was going to take considerable time for my body to get out of it. But still having problems with migraines [which are obvs hormonal - why do GPs not know this???] and gallbladder which seems to play up in a different way on a daily basis. But things are much better - at least I can think relatively clearly for 2 days in a row now which is fantastic. If we were in a PM I'd say more - and will when we can PM again - hopefully soon. Can one of your family help you out with the techy probs at all???
I'd love to see my family - but my sister and her family are so far away [in europe] so it is photos and zoom and now that things are getting back to normal here everyone else is busy. Ah - the sun is blinking here - feel a rush to the garden to make some vit D coming on!!!
I'm sorry you're feeling so ill...it sounds really scary, and reminded me of how I was some years ago, the daily migraines and the awful pressure behind the eyes that feels like someone's pressing them into your head😣...horrible. I hope things continue to improve for you...the gallbladder thing must be awful in itself. Apologies for suggesting the gluten thing, I didn't realise you'd been down the garden path with that one...my memory is not great either! It's so tricky to get everything lined up when so much has gone out of line over a period of time☹️ Don't worry about what you have or haven't replied to, it's not worth it when you have so much to contend with.
I hope you've at least managed to see your parents, and they're well. Yes, I'm lucky to have some family living locally, and although I sometimes find it all a bit overwhelming [large family, but we should never moan about that] it's been so good to have a change of scenery. I'm back home now, but have a houseful for another couple of weeks, at least, and I'm hoping for more sun, as the darkness and rain has made me feel very lethargic.
Thanks Mamapea1 - at times it was very scary and underlying it at those times was a well of anxiety about DIYing everything - but I just had to keep thinking and researching and thinking some more [as much as painful foggy brain would allow] to try to make the links and work out possible fixes and doing that helped things to settle. Still researching and thinking!!! I hate that I have to do this myself but despite my failings I still reckon I'm doing a better job than my [useless[ GP would do. The really grating thing is that just before the lockdown on her last visit home my sister went to Dublin and saw this very good doctor who specialises in women's hormones - he isn't an endo, but from the process she described to me he seems to be much better than that - and he did tests and produced an individualised prescription for her. No idea of the cost but then she has health insurance so cost isn't a worry for her. But if lockdown hadn't happened I would have gone to see him and if it wasn't for what would be a nightmare prospect of trying to travel to see him I would go to see him but at the moment it would just be too risky. And the pesky gallbladder rules my life - malfunctioning in what seems to be a different way every day which I am also convinced is related to hormones as so many different hormones are involved in GB function. So just going to have to ride this rollercoaster out and try to adapt along the way. Moan over now!!!
I can understand that however enjoyable it might be a large family would feel overwhelming at times. My greatest regret is that I don't have children but I have enough self awareness to understand that with how ill I have been I could never have managed to look after them even half properly - I look at my sister with 3 and she was lucky to have good health until the older 2 were at least of an age where they could do a decent job of looking after themselves and helping her out, but she still has a massive input into their lives and the youngest is full time and I don't know how she does it. Make the most of them while they are around and find ways to get them all to pitch in so that you aren't running around at their beck and call - I know, easier said than done. You might be getting some sunshine now - dull here but a good opportunity to do some moving plants in the garden that I've been putting off for ages because it was too hot to do it. I might be getting some sun tomorrow in which case I plan to do no more than soak it up!!! maybe we are in for an indian summer to make up for the absence of any in July! I know what you mean about the darkness and the lethargy - I never know, having made some vitamin D, whether when the sun goes again for a long period of time, should I start to supp it again - what do you do in that regard?
My brain is so dozy today that I have only just managed to work out now what is going on as the system obvs cottoned on to what Mamapea was trying to do and blocked the post. And yet I still cannot work it out either. Cryptic or any other form of crosswords were never my strongest point either!
I know, but I couldn't crack the code. Imagine - you could semi-cobble together an email address and send an email but goodness know who would receive it!!
Yes I was Marz and Redlester...but I removed the post. I don't think anyone would be able to work it out, but it seemed like such a good idea at the time, and I haven't even been on the grog...I think I just got up too early😂
For some reason, in the early hours, I thought I'd had a brilliant brainwave, and remembering that Marz may recall my christian and surname, I thought I could send a cryptic message to fill in the blanks, but when I saw the expression on my son's face after he had listened intently...I realised I'd backed a loser🙄
I only took it down because I imagined all the people arriving at this post to search for info re folate and ferritin, and as you pointed out Redlester, they would find themselves embroiled in all manner of utter nonsense😂 So the snail mail it is! 🐌 xx
So funny!! I was stalled after the christian name and @ bit so you are totally safe Mamapea. Here's hoping you have good luck with the snail mail - I'm still getting a single batch of letters a week.xx
It may be way too early for this sort of thing Marz. I'm in fits of laughter here. My son just popped round and I tried it on him [he doesn't know it, although he only has to guess half of it] and his response was "what the hell are you talking about"? He then just walked away. 😂 So I feel I'm putting too much on you here... x
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