Getting Better - I Can Hardly Believe It

I joined here in Dec - at which time I was so ill I can't even describe it. I was bedbound and just able to feed and wash myself. I was so depressed that at times I was hysterical and I think I had virtually given up.

I have been ill for 37 years - but went downhill rapidly when I approached the menopause. At one point, 6 years ago, I was so ill I couldn't even sit up in bed. The on duty GP at my surgery wouldn't even come out to see me.

Fast forward to last Oct, I asked for a blood test. The GP grudgingly admitted my thyroid was underactive. I asked for my results and was given 7 years worth. I can see I had thyroid problems all that time but wasn't told.

After totally losing it with the GP he put me on thyroxine to shut me up. That was the end of October 2012. 50mg didn't make me feel any better or less depressed but it did stop my heart racing out of control and jumping all over the place, so I knew I was on to something.

Beginning of Jan returned to GP. Saw a different one who said that my TSH was now 2.5 so I didn't need to do anything else (where have we heard that before??). I was still depressed, still ill. I said to him "aren't we aiming for a TSH of 1?". He gave me the option of increasing by 25mg or 50mg.

By then, I'd joined here and posted my Jan blood test results. Being a member here I was learning fast. So I started studying my results, reading Dr P's book, etc. This is what happened next.

I increased my thyroxine by 25mg (total 75mg). After 5 days I was sitting on the sofa watching tv when I started to realise I was feeling different. Before Xmas I paid for the saliva adrenal test, so on Dr M's recommendation I started taking 10mg DHEA in the morning. I also added a multi-vitamin tablet along with 1 each a day of nutri-adrenal and nutri-thyroid.

4 weeks later, I increased the thyroixine again to 100mg. Again, 5 days later I started feeling another improvement. This lasted for 2 weeks and then I started feeling hyper, so reduced back to 75mg.

A week ago I increased my DHEA to 20mg and also started taking 2 cortisol tablets in the morning along with a small amount of testosterone cream for women.

I can hardly begin to tell you how much better I am feeling.

Yesterday I went out for lunch with a friend and did my own supermarket shopping. I'm hoping to go out to dinner tomorrow and possibly to a concert in a local church on Sunday. All these things would have been unthinkable a few weeks ago.

In summary - this is what I am currently taking:

Morning:

20mg DHEA

2 x cortisol tablets

small amount of testosterone cream

B12 oral spray

Lunchtime

1 x nutri thyroid

1 x nutri adrenal

1 x multivitamin

Bedtime

75mg levo

I'm off to see Dr P in 4 weeks time. I'll probably ask the GP for a repeat blood test before I go so I can see where I'm at.

I'm doing the temp/heart rate chart. My temperature varies between 35.5 on waking to around 36.3 late afternoon. I've had a low body temperature since I was a teenager so realistically don't expect that to change. I think my body just functions that way. But I could be very wrong, of course.

My heart is still racing - usually 85 - 100 bpm. But at least it isn't pounding or missing beats any more, so I'm not actually aware of it.

I haven't addressed my ferritin level yet, which was also low.

The one thing that is still out of control is my blood pressure - which is high and I'm on ramipril. I've just ordered hawthorn and garlic so it will be interesting to see if they can help.

Hopefully I'll be able to start getting some exercise and maybe lose some weight. I'm not overweight by any of the charts, but I am overweight for me - I used to be a natural stick insect.

Onwards and upwards. I am SO GRATEFUL I found this place. I don't know what I would have done without it.

(just as a PS. My posts always sound as if I don't get on my GP. Experience has taught me that I have little time for most doctors. However my regular GP and I get along alright - he's the first one I've had that isn't rude to me, doesn't shout at me and listens. Sadly, he rarely actually does anything! The GP I shouted at to get levo wasn't my regular one.

I think my regular GP could turn out to be my best ally. He's dim but if I decide, for example, to try T3, he's unlikely to put up much of a fight!)

38 Replies

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  • Lovely to hear such a positive post and I am so pleased that you are feeling on your way to 'normal'. You may find addressing your iron levels is the icing on the cake. One word of advice however, do too much and you will pay for it. Your body has been ill for years and over working it in the beginning (which we all do) will catch up with you. Be kind to yourself and pace yourself.

  • Yes Poppy - after I had lunch with my friend yesterday her parting remark was "don't overdo it". I said "I'll try not to, but you know me, I probably will".

    Thanks for the kind thought.

  • Woohoo! Thank you for posting this positive news. I'm sure many others will feel encouraged and benefit from your detailed account.

    Here's wishing you continued success!

  • I am glad you are recovering your health. Great news and it will be a boost to many on the forum that there can be a way to feel so much better.

  • Your's is exactly the kind of story I was trying to explain yesterday on here to a lady who sounded so desperate.

    Well done you for taking control of your own health and getting great results. Yu must feel sooooo proud of yourself.

    Moggie x

  • Brilliant! Long may it continue! :-) xx

  • So glad to hear some good news and I laughed out loud at your comment about your GP being dim. He sounds like mine who certainly listens to me but everything and every test he's done has been requested by me rather than suggested by him.

  • thanks for your positive post and really pleased for you that you are getting your life back. Thanks in particular for patiently posting exactly what you take, thank goodness for this site, so we can all learn from each other!

  • Great to read your positive story :) Yes totally agree about getting you ferritin up - I think low ferritin and low cortisol make my heart race, so getting these up could really help. Interested in what cortisol tablets you are taking? Xx

  • HI Clarebear - I take "isocort herbal supplement". Ferritin is probably next on my list. I've been adding things in one at a time, so I have a few weeks to see how I'm reacting to each change.

  • Lovely story, I'm so glad you're finding a way through all this, I laughed at the dim gp comment too. Lol

  • I'm so happy for you - fantastic news. But I do agree with Poppy03 about being careful not to overdo things. My Endo always tells me to listen to my body, to pace myself and to remember that I don't have any energy reserves, only what the daily medication provides - so if you do overdo things you will almost certainly pay for it later. Sorry if this sounds pessimistic, it's only meant to help you avoid it. Best wishes for continued improvement.

  • Hi Rosetrees,

    It may be something you may wish to consider with your low morning temperature and high pulse rate. Both of these can be caused by food intolerance. I have seen my temps drop whenever I have inadvertently contaminated myself plus I always gain weight. When my system is clear the temperature pings up and the weight comes off. I also notice my blood pressure varies quite a bit, especially the systolic (top reading) although this may be due to me being on T3 only, not really sure. Sugar seems to suppress the waking temp too!

    Happy to hear you are feeling so much better, long may it last and continue to improve :)

  • Great news. I, too, laughed at your 'dim' comment. It's amazing how much can be learned from this site. It has been a lifeline to my recovery.

    x

  • Well done and hope you continue to improve.

  • Great news and after so many years - wonderful!

    Re 'overdoing it'; little afternoon naps are wonderful - so many civilised cultures depend on them - that's my excuse anyway!

    Hope your progress continues!

  • So pleased you've made such a huge difference in your health and that you're feeling so much better! :)

    Please do heed the warnings of not overdoing it though. When I've felt better, I've always overdone it and ended up someway back to where I started. I've learnt my lesson now, so hopefully, next time I'm feeling well again, I'll just except it and not try to fit the years I've lost into a week! lol

  • This is wonderful news. You must be feeling reborn. How dreadful that you have had to suffer so many years of unnecessary misery. But that is an all too familiar story for so many of us here. It is joyous to get such positive news! Keep up the good work.

    Xxxxx

  • Good going Rose, yet another takes responsibility for themselves and finds a promising way forward.

    My own experience for it's worth tends to suggest that if after long term hypothyroidism we're lucky enough to achieve a replacement breakthrough (T3 was the key step for me) that the work goes on for years after that. As in as the more severe symptoms reduce others become more evident, and we find fixes or partial fixes for many of those too.

    Dental mercury was a secondary issue (but maybe even the first cause), and it's taken years of avoiding problem foods and the like to get my guts and immune system to return to a semblance of normality too.

    I'm convinced the intuition/lucky happenstance thing kicks in too - that when we show willing that there's help that kicks in. That for some of us (and perhaps only to some level/the outcome may not be perfect health) it's about our learning this (life) lesson. That by our mindset we play a very large part in determining outcomes - in much deeper and more subtle ways than simple physical cause and effect might suggest.

    You're right on one. It's not a remotely desirable situation, it won't be right for everybody, and of late I seem to have been led to a more rational and open minded young endocrinologist - but my own experience too has been that a 'suggestible' GP is far more useful than a take charge type who will inevitably ignore symptoms and feedback, and with blinkers on lead me right up a gum tree.

    The issues with the one size fits all T4/TSH and associated blood testing dogma are bad enough enough in themselves, but when you add the effects of downright bad judgement calls on hormone dose changes it can become a real mess. Effects that is which can take months and years of groping in the dark, large amounts of money and heaven knows how many highly extended change/test/adjust cycles to fix. That's before the effects on well being and ability to live and work normally are factored in.

    We each have to decide for ourselves, but my own experience has been that it's far more effective to trial a small medication change and be led by the symptoms - that it's possible to very quickly dial in to an optimum.

    I don't know enough on blood pressure to help (but have been shocked at how little a succession of consultant physicians has seemed to know too) - but after many years of hypothyroidism, advanced auto immune disease and a thyroidectomy I still have residual problems in that regard too.

    Mine are different - adrenal related. (too much/easily triggered by stress) Maybe you will find a fix yet.

    Do watch out for the adrenaline/stress hormone levels though - if they were to start to get high they drive the BP up. Be aware too that the usual treatment of this with beta blockers impairs some of the thyroid processes. My experience has been that finding the exact dose to control the BP while not triggering repeat hypo symptoms requires very careful tuning of the amount (i work in 1/4 pills) - much more so than the medics tend to consider necessary.

    Well done again....

    ian

  • Ian - your comment re beta blockers is VERY interesting. 37 years ago when all this started I was told a) there was nothing wrong with me, whilst b) being put on a mega dose of beta blockers to stop my heart racing out of control. I was 20 years old and innocent. At the age of 27 (call me a slow learner) I decided to come off the beta blockers. This was after one GP repeatedly shouted at me when I asked if there were side effects (no internet in those days) and then my subsequent GP told me that I wouldn't be able to come off the beta blockers. This was the same GP who sent me to a psychiatrist whose report said "she should be told to keep away from doctors and mustn't be allowed to use her intelligence to discuss it". I did as I was told for many years.

    I recently looked at that GP's surgery reviews on the NHS website. The same doctor who clearly hated patients and hated being a doctor 30 years ago is now head of the practice. They have one star only on the NHS website and the reviewers all say how rude the receptionists and doctors are. Sadly, of course, I can't tell you which surgery that was!

    I always felt that taking beta blockers was wrong. They totally wiped out my 20's when I was too ill to do anything. After stopping them at the age of 27 I managed to get my first job (3 afternoons a week) and started to get a social life.

    I will need to be at death's door before a doc could persuade me to go on beta blockers again! Their effect is best described as being hit over the head with a sledgehammer. Doooooh - talk about brain fog - they totally did my head and everything else in.

  • Such an interesting post, which has given me much food for thought. Thank you. Karen.

  • You "dim" comment is fab!........made me laugh!

    Xxx

  • Seems to make everyone laugh! I said to a client just a few days ago, which is where it started. She agreed that this particular GP is the "go to" man if you want something that the others are refusing you.

    (Maybe I should explain that I'm in to all things computing. It's something I can from home, lying on the sofa.)

  • I need a "go to man" for more than just my thyroid!!! Xxxx

  • PS/clarification/not to create the wrong impression. There are times when the thyroid and other blood tests are highly useful and very advisable - e.g. as in when stuff is badly off, or when screening for possible causes of problems.

    My experience though is that as above it's far more effective to be guided by symptoms when tuning thyroid replacement for wellbeing, and they are best taken account of at all times anyway. It's surely never wise to second guess the wisdom of the body??

  • I'm definitely not against blood tests. I think we need to learn to interpret them for ourselves. Fortunatly my "dim" GP has a printer on his desk. Ask for results and he prints them on the spot for you.

    I think it's time I went back and had a chat with him. He thinks I'm taking just levo plus a double dose of anti-depressants. Boy is he in for a surprise!

  • Fantastic news rosetrees!

    Where did you get your testosterone cream, cortisol tablets and DHEA please?

  • Hi Margo

    My DHEA comes from Amazon. I can't honestly remember where I got the others, I was too ill to care at the time.

    The cortisol is "isocort herbal supplement" made by Bezwecken. The testosterone cream is "TestaEdge Cream for Women".

    As of today I'm not using the cream as I read that cortisol (or it might have been DHEA) increase the production of testosterone from the adrenals and this can increase blood pressure.

  • Just found the isocort on Amazon amazon.co.uk/s/?ie=UTF8&key...

  • Well done rosetrees, so glad that things are finally getting better for your after so long....I'd also like to issue a little warning that I'm sure I'm not the only one who was guilty about it: when you start to feel good and almost 'normal' we have a tendency to think we can get back to the way we were before...and sometimes we crash...just pace yourself and enjoy this new stage in your life...long may it last....

  • Thanks for all the cautions about pacing. I've been doing that all my adult life. I'd like to get well enough to go back to singing in choirs. That will be a real achievement.

    I've just spoken to my GP - he's arranging another blood test, with T3 this time. He'd phoned the lab and they have agreed to do it if he asks again.

    I told him about Dr P. He's not heard of him but has gone off to "google him".

  • It's great to see some realpolitik expressed Rose - thyroid life as it often really is.

    We're all slow learners. It took me seven years to figure i was hypo, and to understand the treatment required. (3Rs for the gut and immune system, and T3 to overcome conversion and use issues - with T3Paul's antihistamine & Vit C regime in recent times)

    Pardon me those who have heard my story before - but I never succeeded in getting diagnosed despite seeing many doctors, and ended up going down in 2005 after 15 years in total with clotting in left renal artery probably caused by this undiagnosed hypothyroidism.

    They spent months of hospital time digging around, diagnosed all sorts of stuff including a kidney tumour which turned out to actually be a consequence of an old accident, and only very late on twigged that I had an enormously enlarged thyroid, advanced auto immune thyroid disease and a thyroid cancer - it had grown right down under my right collar bone.

    I kept on working on diet and the 3Rs which helped to moderate my symptoms, but almost gave up in my attempts to get a diagnosis. One GP in particular who had over many years consistently diagnosed depression and poo pooed hypothyroidism (despite having been handed written briefings on the condition) was despite the outcome still as of a year ago (i had a thyroidectomy in 2005) playing the sceptic to my face when I met her socially...

    There's no shifting those that won't see...

    To be fair to your Doc - it'd be nice to think that he's not so much dim as he doesn't play the usual stereotyped master of the universe role that many of these guys feel they have to act out. (and that many of us are conditioned to expect and demand) Maybe there's a deeper and more knowing/trusting/co-operative sort of intelligence coming through...

    Don't write off beta blockers totally. They sure as hell can flatten you if even slightly overprescribed, and likewise need great care in setting the dose - but they can help a lot when there's no other option....

    Ian

  • Fantastic news rosetrees - so pleased that you're feeling so much better. Long may it continue!! Karen.

  • Thanks for everyone's kind words. I went out to dinner on friday with a friend. First time in ages. Of course I'm paying for it now. Felt rubbish all yesterday, but it was worth it. I'm going to chill for a few days.

    I still have a long way to go. I'm thinking of keeping a daily diary - meds, activities, diet, etc to chart progress. I've just decided to try the 5:2 diet - so grilled mushrooms and tomatoes for breakfast with herbal tea. I think I'll do Mondays as one of my regular days, but I have a Waitrose order due tomorrow, so I decided today would be better and I can indulge tomorrow!

    (It's my first time using Waitrose - I usually Tesco/Sainsbury/Asda)

  • A few posts ago I said my GP was in for a surprise re my anti-depressants. I spoke to him on the phone on Friday morning. Want to guess the first thing he asked? "Are you still taking the citalopram". I told him I hadn't taken them since January. He was a bit non-plussed and said "oh. I'd better remove them." (Presumably from his list of meds I take)

    He has spoken to the lab, who've agreed to do my T3 when I have my next blood test. I've booked it for a week before I see Dr P.

  • Hello rosetrees, I have been following your helpful comments, especially on supplements, and I wondered what the 3rs are that you mention?

    'kept on working on diet and the 3Rs which helped to moderate my symptoms' - is it the rest/relaxation thing you mean?

    Thanks :)

  • Hi Townie - sorry, I've no idea what the 3Rs are. It wasn't me that mentioned them, it was vajra. Maybe you could send vajra a private message and ask?

  • Oops, bad concentration - thanks rosetrees for your prompt answer - I still find your blog/comments encouraging and helpful!

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