Advice required....frustrated and fed up..... - Thyroid UK

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Advice required....frustrated and fed up.....

Treefrog1 profile image
5 Replies

Four years ago, I was a keen runner I had the perfect figure I could run nearly half a marathon!!, then I had all these bodily changes started gaining weight, heavy long periods moods were very dark and low. I went to the drs and after blood tests I was diagnosed with an underactive thyroid.

So I was put on Levothyroxine... I noticed it iliminated the brain fog, and my mood lifted a little....still was prone to sensitivity, but the muscle fatigue increased as did my weight gain....bearing in mind I was a health and fitness freak!!.. they played about with the levels of thyroxine, increasing...but so too did the problems in the end, I pushed to see a consultant who suggested I came off the thyroxine, as I am borderline.......The past 4 years I have remained off the thyroxine, my weight dropped, but I have consistently struggled with extremes of low mood, I still get mild muscle fatigue, but no where as bad as before.

So I am left with struggling enthusiasm to live, I lack motivation for life, constant thoughts of suicide... I am really scared as I don't know what to do... I am now being seen for mental health issues, diagnosis now of emotionally unstability...which is true as a history of mental health problems.

However, I used to feel more positive, my moods were more regular and balanced.

I don't know what to do I have been given the choice whether to try anti depressants, or go back on to the levothyroxine!!...It all scares and upsets me as I just want to lead a normal life again.

Both options are not ideal, Ive tried Prozac which effects my ability to meditate or feel any thing... Other anti depressants effect my weight further.....I eat fairly healthily, have a physical job and where I live is rural with hills and don't drive, so am keeping fit. Going back on Levothyroxine would make me feel worse.. less able to do my job!!!......what can I do, as I am so tired of feeling this way?????

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5 Replies
108Optimist profile image
108Optimist

Hi there, that sucks and I can really resonate. I am also a health and fitness advocate, meditator, and my work (which I cant do at the moment) relies on my physical energy.

WELL DONE for sustaining what you have!!

It could have actually been the fitness that drove you deeper into an already hypothyroid state. For myself, Im pretty sure I had the hyopt since young, due to being vegetarian and nutrient depleted when I was adolescent. And then an athlete in twenties. I was passed through a few mental health practitioners in my teens and twenties. I have been offered antidepressants many times too! I thank goodness for my experience with psychology/yoga/buddhism that taught me awareness of thoughts and emotions, as I can quite clearly tell what is a hypthyroid lull and depression. I have learnt discrimination there.

Sometimes the clean eating and intense ecercise can cause what is called RED-S Relative Energy Deficency Syndrome. So whilst we are super fit, lean, and buzzing with endorphins, a hypothyroid that is just waiting to be triggered, shows itself. And then we learn new styles of movement and nutrition!! Intense exercise in vulnerable people (and you can be that vulnerable person without knowing) affects the part of your brain that signals release of stress and thyroid hormones, and sex hormones (eg menstrual cycle). You end up with a hormonal sh**-storm!! Intense exercise in vulnerable people can also affect gut permeability which is another part of the puzzle in hashimotos.

Movement uses more of the all important T3 hormone, leaving you more depleted. If you are not aware this is happening, then you go deeper down the hole until you are maxed out and determination doesnt win out anymore. I know how you feel!

Rest is something I am still struggling with even to do a bit of yoga!

But this is about you...... ;)

There are other solutions than levo - NDT is natural dessicated thyroid - there are many types and some people have to try a few first.

There is also T3 only treatment which is best for people that cannot make their own T3 out of the precursor (T4).

If you post any results you have on here, with ranges, the people who are much smarter than me about this will be able to give you opinions (and you may get more than one opinion :)

Also say if you know if its hasimotos, or a pituitary defect, or whatever you know about yourself, including any nutrient deficiencies, eating styles, intolerances, other symptoms.

I know how you feel...tired of being tired.

You are doing great and you are in the right place!!

The people here will help you as much as they can. Sometimes doctors are helpful and some are not. I have ended up self medicating and self testing as its easier than the battle with the doc. Not sure what your outcome will be but the people here are well educated and have their own experiences to share.

You are doing great!! hang on in there!!

X

PS, i didnt think I was exercising intensely, i was just enjoying myself and was good at it! But there was a kink in the system some where, Some people can sustain that, but seems under my particular set of circumstances I could not. Fingers crossed treating the hypot leads to recovery of some if our energy!

Take care :)

Can't be much help. I'm afraid. It was overexercising that did it for me, too. I was a bodybuilder. I found that t3 only helped more than anything esp with mood, but I started very slowly. My adrenals are, I think, at the root of the problem, so that might be a place to start.

SlowDragon profile image
SlowDragonAdministrator

Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

thyroiduk.org.uk/tuk/testin...

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

If you have low nutrients, and have a good varied and healthy diet, but no Hashimoto's, it may still be worth trying a gluten free diet for a month or so to see if it helps.

lc1973 profile image
lc1973

Hi Treefrog1

I can totally identify with your post re your former fitness, i too used to be able to run long distances on a daily basis along with cycling and walking. I think i depleted my T3 like Angel of the North and 108Optomist are saying in their replies (i think!). I reckon before offering you an ultimatum of antidepressants or levo for which as you know they are not substitutes for each other you need to get your TSH, FT4 and FT3 tested again, along with all of the nutrients Slowdragon has suggested and start from there. I too have struggled with Levo and take T3 as well now and i am still trying to figure out how to fix myself but i have low nutrients to sort out as well which seem to be a common problem.

Treefrog1 profile image
Treefrog1

It's been two years since I wrote that.. I am in a happier place in my life.. I became a farmer's wife!. I moved and my life is different. I did get put on anti depressant what I am coming off now. They helped me get through those difficult times. I am still borderline hypothyroid, I choose to not go on levothyroxine. My new Dr has not been much help, I am a new patient at this surgery..she doesn't really know me.. she wanted me to stay on the antidepressants because of my history of mental health problems.. she also said I am perimenopausal. Are ok I know is I believe my thyroid levels are effected by stress. I think because if my continual anxiety, causing brain to over work..adrenaline that has caused the imbalance. Now I am feeling better I think I have improved. Who knows?.. but I know that levothyroxine hasn't helped.. it caused more problems. I have been to the gym recently. My fitness picked up a bit.. it does seem that my body takes longer to repair nowadays after Extreme workouts.but that could be my age!. I'm now 47.. it frustrates me that I'm not incontrol like I was once, about my weight with the running..bi knew if I ran 4 times a week I could sustain being a size 10.. now it's like oh well as long as I look ok.. can still move do my cleaning job that's ok?. Pretty shame I say.. from the woman who used to run every where!!. Why oh why do they not know how to fix this??. But like cancer.. the thyroid seems to be something they struggle to resolve.. maybe one day...

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