Hi everyone and sorry this post is going to be a long post, convoluted and a bit of a downer (with a possible rant as well).
This evening I've been listening to an interview between Michael Risen and the Thyroid Trust (here's the link if anyone is interested: youtu.be/dBmwRpsUPQM) and there's a segment in there that talks about how depression can be caused by hypothyroidism.
Interestingly Rosen says that it also depressed his emotions as well as his mood, meaning he didn't react to things like a regular person would, everything was muted.
This has struck something of a chord with me recently. A couple of weeks ago I went for my yearly thyroid blood test and blood pressure check. I'm already on blood pressure medication but the pressure was very high and the doctor was worried. Prescribed more medication, booked an ECG, follow up appointments, ask that jazz. Said if I feel chest pain it's a 999 job. Generally fairly scary stuff.
The problem is, my initial reaction is to think 'oh thank f**k, it'll all be over soon and I don't have to deal with any of this crap anymore'.
I don't really know how to structure this next part but I'll try my best.
It's worth noting that I have a binge eating disorder that I sought help for a few years ago. For the most part it is now under control.
I didn't realise at the time but the doctors that I saw did not follow the NICE guidelines regarding the length of time between blood tests and upping the treatment. So what should have taken a few weeks or months to get to a decent dose, instead took years.
I'm a tall guy, was quite active, had a physical job and before I started showing symptoms of hypothyroidism I weighed about 17 stone. When I first began treatment for my thyroid I found that I began to pile on weight and suffer regular episodes of depression. This exacerbated the binge eating and accelerated the weight gain.
I then developed plantar fascitis and walking became incredibly painful leading to me becoming quite sedentary, again making weight gain worse. My blood pressure started going up.
It was at this point that I sought help for the binge eating.
Part of the treatment is about avoiding weight loss systems, instead it's about making better daily choices, but this is not conducive to fast weight loss.
The problem I have though is that I'm stuck in a loop, about two thirds of the time my mood is stable and I start to make better choices but then a depressive episode comes along, I just don't care and quite frankly I'd be quite comfortable being dead. My emotions are numb.
I don't feel as though I still have any energy, although maybe that's now more to do with the weight gain now?
So, two questions I guess, does anyone else get these regular periods of depression and numbness? Is there anything you've done to help alleviate them?
The other one is a bit weird. It's to do with anger. I'm really angry about how my treatment was conducted, I'm furious it took so long to get to a point that was even approaching feeling normal. Reading about the dangers of hypothyroidism, I realise now there was a point where it could have been a medical emergency after forgetting what words meant and passing out in the car.
I try and forget about it but whenever it pops up, I get very wound up by it. I've gotten quite resentful of doctors and their advice yet I know that's irrational.
If you've experienced a similar thing, how have you got over it?
Sorry to have gone on so long, I'm just at the point where I go either one of two ways, either I try to get better or say 'sod it' and embrace the end.
Cheers.
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DanW
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Thank you for the informative reply. I'll try to answer the questions in order.
Yes I'm on Levothyroxine. 150mg daily. Although this is how bad my memory has become, I did used to take a grain of Thyroid-S as well and that had good results. But my supplier couldn't get anymore and then I just kind of forgot about it. I don't really know where to source it from now, everywhere I can find seems to set off my scam alarms.
I did forget to mention that my weight has ballooned to 25 stone so that no doubt makes plantar fasciitis more likely as well.
On the initial dosage increase I had bloods done every three months the first couple of times and then every six months after that, then every year, even though my results weren't stable. I changed GP's to a well regarded training practice in the hope of finding someone who might follow the NICE guidelines but still no luck. The brand I'm given seems to change every month but I don't get a blood test afterwards.
I had my last blood test a week and a half ago and I rang this morning to see what the TSH levels were and they said in their notes it was listed as a doctor needing to ring me, so they scheduled that for Monday. I'm assuming that something is amiss and they need to talk to me as normally they don't bother calling me about the results after blood tests if everything is "normal".
I do apparently have Hashimoto's hypothyroidism.
I don't take any supplements at present and I haven't had any tests done recently for them. I will look at the links you have provided thank you.
Ideally test after minimum 6-8 weeks on constant unchanging dose and brand of levothyroxine
Make sure to test early morning, last dose levothyroxine 24 hours before test
Many (most?) Hashimoto’s patients need to supplement vitamin D and vitamin B complex and magnesium daily
Many initially need a separate B12 too until B12 is improved to optimal levels
Hashimoto's affects the gut and frequently leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
Both dairy and gluten are inflammatory foods
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Hi Dan, sorry you are suffering. I think it’s likely that a very large number of people feel regret and resentment about how we have been treated in the past - I, for one, had a v difficult time.
I don’t dwell on it, for the most part because I can’t change it, and because I have other difficulties to deal with.
Your thoughts, I’d say, are entirely normal. We all deal with things differently and no one way is right or wrong.
I cope day to day by taking short views of life and quite literally take things a day at a time, sometimes even hour by hour. When I feel overwhelmed by stuff - which is often - I focus on what I can actually achieve that hour or that afternoon or that day - this way I relieve myself of the burden of not having all the answers to my problems - which of course, no one has!
The other way I cope (and this took years to work out) was to make sure I regularly do something I want to - to take even just a few hours out of my situation - a break, a relief from things that stress me. I’d be lost without that.
I guess all I’m trying to say is that your feelings are normal and valid and many will relate to them, and I wish you well in finding a way through. I’d urge you to seek someone to speak to if your mind is going to dark places.
Thank you for the reply. It doesn't help there's so many other things to worry about as well. And not feeling well, being tired and down doesn't help with any of it.
I've contacted the eating disorder group about how best to try and tackle losing weight without triggering the eating disorder again, but they've not replied yet. They're probably snowed under as well as everywhere else.
Another problem is that we've recently moved house and there's an awful lot of stuff that was hidden and needs rectifying, so I can't really do what I want as there's no where to do it, just boxes piled everywhere and DIY stuff. I've broken my foot as well so I just have to sit inside looking at all the things I have to do.
I too feel resentment because of the treatment I didn't receive from the NHS which fuelled my anger to do it for myself.
I'm not expecting you to jump ship, yet, as it takes time and much reading and research but you are likely under medicated with whatever thyroid hormone replacement you are taking.
The first step is clearly to get a full thyroid panel run to include a TSH, Free T3 and Free T4 reading - which I'm afraid you may find you need to pay for yourself as my surgery refused to run this for me.
The body runs on T3 and not T4 - as this is a pro hormone and needs to be converted by your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
The thyroid is a major gland responsible for full body synchronisation and includes your physical, mental, emotional, psychological and spiritual well being your inner central heating system and your metabolism.
Your body needs to be able to convert T4 into T3 - and in order to do this well you need optimal levels of ferritin, folate, B12 and vitamin D and down regulation also can be impacted by inflammation, antibodies, and any physiological stress ( emotional or physical ) depression, dieting and ageing.
The yearly thyroid function test is a total waste of time and if nothing else we need to see a TSH, FreeT3 and FreeT4 reading and you can get this done with just a finger prick blood test.
There are a listing of private companies on the Thyroid UK website - which is the charity who support this forum - thyroiduk.org -
We all likely now the answer as your post is not that unusual but we do need some facts to work from so just follow the instructions as already detailed by SlowDragon.
Thanks very much. I've mentioned in a comment above that it's surprising how poor my memory is now as I did start to try and sort myself out but then just......forgot.
About four years ago I found a supplier of Thyroid-S and took a grain a day on top of my 150mg of Levo and it worked quite well. But then there were supply issues with the porcine variety and the supplier stopped selling it. Then it seems I forgot all about it. I'm not sure where to get it from now.
I would like to get the private tests done but it's been a matter of cost. I've not always had a decent amount of disposable income, but I'll give it a go now.
Well yes, before you can move forward we do need to see a full thyroid panel so to see better what the next best step forward for you
1 grain NDT is said to be around the power of 100 x T4 which as I type this I know is a stupid comment as if not able to convert the T4 - irrespective of the dose, it's of no power at all :
So to be taking 1 grain NDT on top of your largish dose of T4 and just feel a mild difference makes me think the T4 isn't being absorbed properly in your body and likely vitamins and minerals are too low to assist in conversion.
It's a bit like a house of cards where if one card falls if you're not quick enough, all the other cards lack the support and start to fall as well.
Yes, I'll follow some of the links that SlowDragon provided to try and get a better idea of what's going on. I'd rear that the new guidelines are to not start you off on a small dose and slowly increase it but to dose 1.6-1.7mg for every kilo of body weight. I'm sure there's a limit to how much they would dose initially but if I followed that rule I should be on about 250mg of levo a day. Lol.
Interestingly, I think I've only felt Hyper symptoms once when I tried taking just NDT and took two or three grains in a day (although like I say, my memory is absolutely shot).
On the Thyroid UK website you will find a list of both hypo and hyper symptoms and some symptoms can sit in both camps - and it's just a guide - but symptoms a various but I very much doubt taking a couple of grains of NDt in just a couple of days would have had much effect - but who knows :T
A bit more is coming back to me and I think it was actually when I was going to try and swap over entirely to NDT as the doctor was taking so long between blood tests so I thought I'd do it myself. So I may have been taking the NDT exclusively for a while, although I wouldn't say the symptoms were severe, more just like having an energy drink (I don't have caffeine anymore).
I used to live on energy drinks as I had a job that required you to be constantly alert whilst being a bit 'full on'. Fortunately I stopped using it after finishing that job but I do worry about the long term health effects now. A YouTuber I watch occasionally for reviews suffered heart failure after having too many energy drinks, and they were very young.
Golly - well I've had one too many whiskies in my time though now don't drink -and now the money saved is diverted to my optimal thyroid hormone replacement regime - as I'm no better off and know I can't afford both !!!
The kilo by body weight is just a ' kick off ' guideline to work up or down from - and yes, I'd have been on more medication if this guide had been followed by the hospital.
i was very angry too .. first, for about 15 years when i was being treated like "your thyroid problem is sorted now, so any remaining difficulties you have are down to how you think and behave ~ nothing physically wrong with you anymore ".... whereas i knew damn well that the difficulties i was having (after using my muscles for anything strenuous) were very real indeed ,, and not how i used to be at all.. so not just my personality or anything to do with 'my head' .
but at that point ,my anger was interspersed with self doubt , thinking they we probably right , and i was just a rubbish , undisciplined, unmotivated, randomly chaotic human being with a 'messy head' .
then once i started to learn a few more things about thyroid treatment ~ how little they actually know about the function of thyroid hormone, how very individual people are in that respect , and how i wasn't offered a trial of T3 back in 2005 when it was easy to prescribe ..and they let my go down the "?CFS/ME" route instead of telling me T3 exists .....and also how the treatment of "Chronic Fatigue Syndrome/ME" has been conducted based on biased research which deliberately twisted the results to make it look like it is really just a 'head issue ' and not a body issue at all.
.... once i found that lot out, i was furious for about 3 or 4 years.
But that anger and fury and self doubt didn't last forever ..it's all gone now ... i am happy and calm and empowered ...i'm in charge now, not 'them' .. i know the score, and the facts better than 'them' ... and i think this shift in how i perceive the power dynamic has allowed me to let the anger go...and it's a much nicer place to be.
A few years ago . i had that same reaction to you ( ie. "good~ at least i can get off this crap bus ride soon ) to an early stage cancer diagnosis (not a terminal one as it turned out )
anyway i was a bit alarmed to realise that was how i reacted to it ... seemed uncomfortably close to "suicide for those who don't want to take personal responsibility for doing it "
That too did not last forever .. i definitely DO NOT feel like that about it now ... i'm mentally very happy with my life even though i'm not much better 'physically' than i ever was over the last 20 yrs ( in fact 'technically' i'm worse physically , but that is mostly due to being closer to 60 than 30 )
I'd be really pissed off if i had to leave now ... and so would my adult kids .
Thanks very much for the reply. Yes the self-doubt part is particularly identifiable. I don't want to be someone who second guesses doctors but it's becoming increasingly apparent that the doctors don't keep up with the guidelines and the guidelines don't keep up with the science.
i also don't want to get into second guessing doctors ... but that attitude only applies to Doctors who are at least having a 'first' guess and showing some sign of doing some actual 'thinking ' of their own , and crediting me with enough brains to have an objective view of my own symptoms and reactions to dose changes etc .
once i realised how little knowledge and information they have to go on, and how firmly they are funneled into overly simplistic thinking about hypothyroidism and it's symptoms and treatment, and how the cause of 'any remaining problems once on levo' are always presumed to be one of two things:
a) patient doesn't take Levo properly/ regularly .
b) patient's thyroid condition is not an issue now it's been treated with Levo and patient is either making a fuss about nothing or blaming all their other problems in life on their hypothyroid diagnosis.
... then in that case it becomes apparent that 'somebody' needs to be doing some critical thinking about it .. and since it's evidently not going to be 'them' , it had better be 'us'
I would be SO happy to have an intelligent/ thoughtful /questioning conversation about my hypothyroidism and it's treatment with a GP who was actually thinking about the How and Why of the unexplained things my bloods sometimes do ... but no .. just 20 years of being asked 3 times in a row " do you sometimes forgot to take the tablets" ...and nothing else.
DanW I am at an earlier stage of treatment than your previous replies. Your description of your thinking aligns with my own. However I have found (along with ups and downs) that educating myself about as many things thyroid as possible and, taking on more and more responsibility for my own treatment, helps shunt these thoughts. I still have the thoughts at the moment but not every day. I liked Michael Rosen’s talk with the Thyroid Trust. It was interesting to hear a man talk about this stuff and see the different way he had of understanding it. He seems a lot more matter of fact than myself. As he is a writer, his explanations are a lot clearer than any description I could make. I tend to think in pictures but I very much appreciated his using words. However just because he is a guy, that will not make him speak for all guys, never mind all people. Your story will be similar but completely unique. We are not clones. I am glad you have reached out. Start working on your plan to get well - with all its ups and downs.
Thanks for the reply. If you're just starting out (and I wish I could go back through time and give this advice to myself) just make sure you read the NICE guidelines and make sure you make your GP adhere to them. If they don't, find one that does.
The longer it takes to get back to feeling right, the more stuff breaks. It's like having the engine management light on and your mechanic going 'well, we changed the headlight bulbs, so come back in six months and we'll take a look at the washer fluid'.
Yes we come into this ‘thyroid world’ with precious little information and at a time when we are usually already in a poor state because medics do not seem to be properly trained to see/diagnose it - never mind treat it. I listened to the BBC sounds/Michael Rosen after speaking to you today, just to remind me really about him and to see if there was anything different that he would add to the Thyroid Trust interview. I noted that he had studied medicine a bit and he himself noted that as soon as hypothyroidism was mentioned he ‘got it’ (not his words). Something similar happened to me. As soon as I got the diagnosis without any explanation of its consequences (which I was somewhat and somewhere within myself familiar) I replied “You mean I am not just a lazy bitch?” I like your idea of reading the NICE guidelines. I don’t think I was fit for that at the beginning. However your explanation of headlights and washer fluid. It’s rather apt!
I'm thinking of getting Rosen's book, That's Not My Nose, as it's about his illness and recovery.
He also has an interview with James O'Brian on a podcast called Full Disclosure where he talks a bit about it. Although I guess some of it is repeated from the other discussions he's had about it.
Interestingly I didn't go to the doctors because of my tiredness, I thought that was more to do with working a lot. Instead I went because I found I couldn't bend my fingers in the morning and thought it was arthritis. Fortunately that doctor took it as a sign of hypo and sent for blood tests. Although everything after that they seemed to pull from their medical training from like 50 years ago, so it wasn't terribly up to date.
I've had a lot of episodes of binge eating throughout my life, starting at about the age of 10. One thing I have found is that having low levels of iron will give me a voracious appetite. And I never want to binge on healthy food - it's all sugary junk.
I was treated for anaemia aged 11. My treatment consisted of just two or three months worth of iron supplements with no follow-up test (that I can remember). It was then I started to gain weight and wanted to eat lots of junk.
Then I got seriously ill aged 13, lost loads of weight and required major surgery. About a week after I was discharged the hospital sent a report to my GP, which included in the final few words of the final comments that I was anaemic and could the GP treat me for it. I only found out this was the case in my 50s after getting a complete copy (or as complete as my doctors allowed) of my GP records.
My GP never treated me for that anaemia. I doubt he even read the report. I ate and ate and ate for the next 2 or 3 years and piled on loads of weight - several stone. You can imagine how much bullying I got from other kids. A really fat teenager is one of the most miserable creatures in the world!
Eventually my anaemia was found and I was treated. Over the next few years (it was very slow) I lost three stone and stayed at a fairly reasonable weight for a long time.
My theory is that the body starts making people want to eat and eat because it is desperate for missing nutrients. In my case it was iron, but perhaps for others it is something different.
Getting nutrients tested and optimised is absolutely essential to anyone with a thyroid problem because the body needs good levels of nutrients to convert T4 to T3. It is NOT a good idea to take multivitamins. Instead, tests should be done and only the nutrients which are below optimal or deficient should be taken.
Thanks for the reply, sorry to hear that you were failed by your doctor. I can sympathise completely about being an overweight teenager. The mental scars (and sometimes literal scars from stretchmarks) can last a lifetime.
It's odd that we just take this reactive, isolated approach to healthcare. There doesn't seem to be a focus on joining up different problems and how they interact with each other. Not to mention the focus on physical, rather than mental recovery, like the brain isn't an organ just like the rest of the body.
Not to get too philosophical, but I often wonder if that's as a result of hundreds of years of treating our personality as a separate floaty soul thing that's entirely divorced from the workings of the body. Rather than a just an assortment of neurons that's as part of the body as the liver.
I think it would save the NHS so much time and money if it spent just a little more time and money looking at the whole person rather than just the issue in isolation.
My ‘overeating’ was not for something as sophisticated as nutrients. I was looking for a simple energy boost for many years - in my mind - not withstanding a body that must have needed nutrients. Any energy boosts were extremely short lived but I looked for them year after year. Since starting Levo I have neither gained nor lost weight. I would like to lose weight but my priority is to feel better; hoping that one leads to the other. However I know now not to go looking for energy boosts from food because now I know why they don’t work! I seem to know when I need food now. I never did before.
I despair of how we are training our doctors. It seems to be far too superficial.
I had the same problem with lack of energy. My parents decided I was just lazy. They were the kind of people who thought that illness had to be seen or else it wasn't real.
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