I thought my recovery from years of hypo would be complete with the right medication, but it's not that simple. Your thoughts please...

[Totoro]

After years of ill health I'm on T3 only and I thought this would solve all my problems and I'd be back at work. But it's not been as simple as that...

My background:

I likely became slowly hypo 19 years ago after glandular fever back then. A year later I was diagnosed as depressed and suffered with symptoms badly for all that time until before being diagnosed as hypo about 3 years ago. I went on T4, then combination T4/T3 and am finally now on T3 only. And oh yes, it was a struggle to get the right medication. I'm also taking some vit B and D.

Even on T3 only I'm not completely stable medication-wise. A different brand of T3 made my symptoms return until I realised it then took a while to adjust the dose upwards. Also I've been taking my T3 much earlier in the day (6am first dose), trying the CMT3 technique and I've increased my dose because I'm taking it much earlier I need a bit more in the late afternoon. My sleep pattern has improved a lot with CMT3 but it hasn't happened immediately and sometimes I still find myself awake at 4am. The next day is messed up. I'm even finding out things like if I sleep in (I used to need to do this to get any kind of good sleep) then I actually now feel worse.

But T3 is mostly great, it's just not instant good health for me.

I've been ill for so long. I've crashed hundreds of times (before my diagnosis, some after too) and been a wreck physically, mentally and emotionally and had to "pick myself up" each and every time. What does that do to a person? If you damage and repair an object repeatedly it doesn't end up good in the end, no matter how you try and fix it.

My confidence is low (but you'll see me with the smiley face I put on), my concentration feels fragmented and I feel slow. I've been pushing myself mentally for well over a decade when my brain didn't have enough T3. What has that done to me? It's the tougher mental tasks like working on a computer that I find especially hard. I'm trying to finish some studying and use that to get back to work but it makes me so anxious and the strain and stress of it is often too much.

I am getting better all the time, rebuilding a social life and volunteering. I'm also wanting to learn some good office skills and intending to get part time temping office work (I've done this in the past, so fingers crossed!).

But when I try and study (a part time, flexible Msc), which is the platform for me to jump back into a decently paid job, I find it very hard or I panic. It's been suggested to me that because I've been ill for so long, that's become my comfort zone. That I long to hold down a full time job again and "be normal" but that it scares me so much that I subconsciously self sabotage myself. That being normal is so scary that I make myself anxious. Then I can't study properly and then I can't go looking for that full time job.

I know it sounds a bit strange. It reminds me of an art project where this woman lived in a box for a week in an art gallery. At first she hated it and wanted to get out. But by the end of the week she'd become used to it and had become a bit scared of leaving it (which surprised her). Does that happen to ill people too? Because being "not ill" anymore means lots of expectations of what I should be doing.

I just want to fix myself. My recovery into regular life is slow. And if it isn't the medication then it must be me. I don't have endless time to get better, I'm living off savings + benefits. I'm too embarrassed to speak to some old friends because I'm not working.

Ok, time to end this long post Does any of this make sense to anyone? Any thoughts or suggestions?

Thanks,

Totoro x

[Hennerton]

Hi Totoro, I do feel for you. That was a very sad post for me, because I am also on T3 only, having tried all the other combos and I now realize that even T3 is never going to be perfect for me. I know I shall always be struggling but I do not believe the suggestion that you are scared not to be ill. I hate that kind of simplistic psychobabble. You seem to be making huge strides but there will always be strides backwards as well as forwards. Gradually there will be fewer setbacks and more successes. If you felt safer being ill, you would not have bothered to embark on the rocky road that is T3 only. Keep your spirits high by remembering how far you have come. Good luck for your future! x

[Totoro in reply to Hennerton]

Thank you Hennerton, that's true that I wouldn't try so hard to get better if I wanted to stay ill. I hope both of us get better over time.

Hugs,

Totoro x

[Clarebear]

Sorry to hear you are not feeling so great on T3 only I too don't think you are bringing this on yourself in anyway. Just wondering if you have tried NDT yet or not? I am feeling pretty well on it now, although it was a rocky road to get here, CT3M helped me ALOT. Maybe you just need a bit more time to let the T3 heal the damage which probably occurred over the years that you were ill. xx

[Totoro in reply to Clarebear]

T3 only has definitely helped me, I've never tried NDT. Knowing how impossible it is to get it prescribed by the NHS I haven't gone down that route. Maybe it would be better, I don't know. Perhaps the T3 just needs more time to work and heal me. I had much more energy on Friday when I first typed this post but now I'm slumped on the sofa feeling worn out.

Totoro x

[Hidden]

Hi,

Several things jumped out at me when I read your post.....feeling better on T3, Glandular fever (Epstein Barr virus), ill for 19 years, the public smile, the troughs and the plateaus, and your constant efforts to be part of the real world. etc. etc.

My daughter was the same until this spring when we went to the USA to see a great doctor there. He has written a book called On Hope and Healing - Neil Nathan.

Below is a link which suggests that your system could be overwhelmed by biotoxins from the Epstein Barr virus that is still hiding in your system and creating part of the problem.

ccid.org/stealth/clinical/s...

You could also be affected by biotoxins from moulds, Lyme Disease and other viruses. Shortly after we returned from the USA I wrote a couple of posts about the subject and how biotoxins can be a continuing and worsening problem because of your genetic makeup, with lots of links. I can't work out how to find them again on this new set up, but once I do I'll send them to you.

You might find them of interest. Jane x

[Hidden]

Totoro,

Here are some links for you to follow up if you want to. I have more if you are interested. We were particularly interested in the article about the HHV6 virus because this is one of the things causing my daughter trouble as a result of having roseola as a baby (she is now 33!).

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

plospathogens.org/article/i...

Jane x

[Totoro in reply to Hidden]

Thanks, I'll go and check these out. I appreciate the support

[sandi]

Oh Totoro so much of what you say resonates with me. Even down to the fact that it is 4am and I'm writing this!

Why am I awake at 4am? Well in part it is because I too have been trying to study. In my case with no pressure but just to get in to a subject that I am keen on and that is making me happy. Yet like any 'brain' work this is knocking my health off kilter - any concentration does this these days even when it is something I really am enjoying. This upsets and hurts me so much.

I have tried lots of different combinations of meds like you and have got relief of some symptoms BUT whenever I up the activity especially mental, but also physical I crash again or lose the equilibrium I have gained. I expect stress to do this when it occurs as inevitably it will in our lives from time to time but why does it have to happen with the very good things too, the things we really want to increase in our lives.

I too think much of this is down to a slow decline after glandular fever. I was never 'right' afterwards but soldiered on - smiley face forward. I do wonder if my body can ever really get better now - much as I want it too. I really hope we can find a solution that gives a fuller life back. It is so horrid to be knocked back whenever I try to put more good stuff back in my life.

And NO NO NO this is not anything to do with being in a comfortable ill box!! Do not listen to these suggestions! I am sure that if you felt well you would be out there without even thinking about it, just enjoying it all. The fact that you do the smiley face thing is a testament to that. I'm willing to bet that when you have good days you just do things.

May we find the miracle!

Sandi

[Totoro in reply to sandi]

Yes! This sounds like me!

I get energy, I do things and then I crash. I don't want these ups and downs. I thought I was doing a bit better with doing more walking. I was thinking about going to a zumba class again. But today has been such a struggle.

I try to make my brain study sometimes I can and sometimes it feels like I'm "straining a muscle" and almost aches.

I wonder if I'm getting refreshing enough sleep sometimes. How I wish I could keep equilibrium. I manage it for a few days and it's wonderful. Then it goes and I'm crashed/struggling. If you have equilibrium with your health you can build things in your life.

I'm going to try going to bed pretty early tonight, maybe that will help. But it's hard to fall asleep.

Hugs,

Totoro x

[marram]

I have been ill a long time (all my throid problems started at age 13, that was when I was diagnosed but would have actually started earlier- maybe 11 or 12) and in all those years since, 24 years with overactive (Graves') and then another 32 years without a thyroid, I have never been fully well. Every time I challenged myself (O levels, A Levels, Teaching Degree) my body and my mind would break down. I would get my qualification and then collapse. I began to see myself as a person who would always fall at the last hurdle!

After my TT I resigned myself to a less-than-happy situation in an accounts office job I could do without too much of a challenge. I am a highly intelligent person who never fulfilled the early promise. I worked all my life but operating on level I knew was at the most half of my capability. I wrote poetry which was generally considered very good, but never published. I have written books which my friends love to read but then they stay in the drawer.

I have accepted the situation, I'm now retired anyway, but now I am starting to get the right treatment, I know I am becoming what I should have been all along. I now can see clearly that the reason I constantly had to take a step backwards is not because I was afraid of success, or happy in my 'ill box'. I WAS ill, but refused to recognise the fact and so did not fight for optimal treatment.

Now I believe that optimal treatment is here, I am trying to overcome years of learned self-doubt. The longer you have been ill, the longer it takes to recover. I am having to learn that if I go shopping alone, I will not collapse in public, nor will the sky fall. It's difficult, but it is the result of the mind having been starved of a vital spark for so long. The good news is that I am learning, I am gaining confidence.

You will, too. But take it one step at a time, your body has to re-learn what it is to be the new you. It is not a matter of being scared not to be ill, it is simply that your battered mind and body have to do it gradually, and you are going the right way. Remember that your brain as well as your body has suffered and is having to heal itself. If it were the mind alone, or the body alone, it would be less challenging. But with thyroid problems, everything has to be healed. It's a matter of time.

It might be a good idea to look at folate and ferritin levels, because even a little bit less than optimal levels can cause depletion of energy and lack of confidence. Janeb's suggestions are a good place to look as well, to see if anything else is causing continuing problems.

Marie XX

[Totoro in reply to marram]

Hi Marie,

Wow, so much of what you say is what I've been through. You say you are a very intelligent person who didn't fulfill early promise. I been told so many times "You've got great potential". But that "potential" has never turned into success and when I hear that kind of praise now, that I'm intelligent, creative etc it's bitter sweet. What good is having these talents if you can't use them properly? And you really want to be able to use them, so much.

I barely managed to get qualifications (after age 19/20 when I got glandular fever) and I think it's amazing that you managed to get your qualifications. I've worked but had to leave when I became ill, then I'd recover with lots and lots of rest and work again. Then ill again etc.

At work I've either been doing office work when I could have done more if I'd been well. And even then I'd have days off just lying in bed, mentally, physically and emotionally spent. I did have a good job at one point but I couldn't keep up with it. People who were less qualified managed better and by the end of my time there people who I'd trained were being promoted but not me.

When you can't manage half of what you should be able to and fail over and over again, it sucks the life out of you.

I'm better than I was, but maybe I am still healing as you say. I don't want to wait to be well, I want to take my meds and spring about but that's not the reality. I am relearning what I can and can't do. I hope with time I'll be able to do more. Some days I have energy but others not. It's very up and down, I hope to become more stable with time.

I'll have a look at my folate levels. My ferritin levels were ok when they were tested last year. I don't know if there is an optimal level.

I hope things keep improving with you. It sounds like you're on the right track

Totoro x

[tegz]

A shot in the dark- have you ever tried Omega 3 supplements- a really good [expensive to get top quality] one?

They are needed by many people without any other health challenges -and are particularly good for brain/eye function.

Not an instant solution, taking a while to build levels up, but may help a bit!

[Totoro in reply to tegz]

Not tried those, I will go have a look at them. Is there any way to get good Omega 3 from food? Fish etc?

Thanks,

Totoro x

[MaryMary in reply to Totoro]

Firstly, I use cold pressed linseed oil for omega 3, 6 & 9. It is used without heating it on salads, added to dressings, porridge, casseroles etc. I buy it on-line, so please PM me for the supplier as I'm not sure if I can say on the forum.

Secondly, I have been in the same situation as you, but after a year am now recovering slowly. After being on t4, then t4/t3 then t3 only I was still fatigued and would crash if I overdid it. I was recommended to a private GP who diagnosed chronic fatigue syndrome due to issues at cell level. This is where I was cynical but have persevered. Mitochondrial action at cell level can be impaired due to lack of essential vits and minerals and blocked by environmental toxins (including the ones already mentioned). After some blood tests I was told I had issues with some heavy metals, Particularly mercury (from fillings, some fish and older injections), chemicals in anti-bacterials, hair dye and salycylates (in fruit). Other people can have problems with pesticides, insecticides, other metals etc. Treatment has involved avoiding the toxins, high doses of vits and minerals, a change in diet, drinking lots of liquids and soon to be removal of amalgams with ceramic fillings. I am feeling so much better now. Know this all sounds wacky but have a think about whether you could have been over exposed to toxins from work or lifestyle. Also, take a look at Dr Myhill's website on the section of toxins for more information. I believe you can send off for tests which she will analyse for you.

You have to believe that you can get better!

P.s. I'm now looking for a job or training.

Good luck

Mary