Account of my experience of hypothyroidism - Thyroid UK

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Account of my experience of hypothyroidism

Truth42
Truth42

Hello everyone,

I've just joined this forum. I have written an account of my experience of suffering from hypothyroidism on my Wordpress blog.

If you would like to read it, it is available at:

ianprobertbooks.wordpress.c...

Thanks and good health,

Ian

23 Replies

Hi Ian - I actually posted a link to your blog yesterday. I read your account of suffering from Hypo and thought it would be of great interest to people on here. Hope you don't mind?

Truth42
Truth42 in reply to Loobs39

Hi Loobs39,

Not at all. It probably comes across in the piece that I want people to read this. Ian x

Hidden
Hidden

You seem to have been lucky with a fast recovery, was it really that easy bearing in mind your TSH was extremely high?

Good luck with getting your life back and do update your blog.

Truth42
Truth42 in reply to Hidden

Well, I wouldn't call myself recovered. For instance, I was up at 5 this morning unable to sleep and I collapsed last Saturday bruising some ribs. First time I'd collapsed in several years actually. I'm just better than I was. About 80% at a rough estimate.

Hidden
Hidden in reply to Truth42

Know what you mean about 80%! Bloomin' frustrating having gone from a fit and skinny 50 something to an angry woman who's been let down by the NHS.

Hurrah for all the info and support on here that give one the confidence to take matters into our own hands.

Do hope the ribs heal soon, miserable for you.

Truth42
Truth42 in reply to Hidden

I'm a quick healer Cinnamon girl. Sorry to hear of your plight. Ian xxx

I read your account with much interest, and I thought it was heartening to see that you are doing well. Sometimes we come across a story like yours, where after years of suffering and not realising what was wrong, a person goes to the doctor, the blood is tested, hypothyroidism is diagnosed, the pills are issued, and they feel better.

If only everyone were like that! That is, of course what the doctors and Big Pharma would like us to believe. That all cases are easily treated with levothyroxine, that if they do not respond, it is not the fault of the tablets or the treatment, but that somehow they themselves are to blame. They are not taking the tablets. Perhaps they are expecting too much, hoping to be pain free, to go for a walk and not collapse?

Sadly, many people have come here because it is not like that. They struggle for years for a diagnosis, being accused of being hypochondriacs - or in the modern terminology, they are suffering from 'somatoform' disorders'. Or, when the standard treatment does not make them feel better, they are told that it is not their thyroid. That they are actually suffering from a myriad of other 'syndromes' which are not diseases but simply descriptions- CFS, Fibromyalgia.

I then read your response to some of the comments, and I realise that in fact, not everything is actually rosy in your garden You are still suffering, and I suspect that you are getting a short straw, too. Perhaps there is a further episode to your story which is not yet written. Do not hesitate to ask for advice if you need it. There are people here whose journey has been long and they have gathered a wealth of knowledge on the way.

I, do hope that you can get fully well and to get back to the work you love. I also hope that as you read some of the stories on this forum, and see the suffering of those who have had a truly heartbreaking experience because the medical profession has totally failed them, that you might be inspired to write about the plight of these individuals, to give them a voice. That is what they need.

Welcome to this forum, Ian. We need you, and people like you.

Marie XXX

Truth42
Truth42 in reply to marram

Thanks Marie. Such a kind and thoughtful response. I intend to be active here. Ian xxx

Ian, passing out is usually adrenal related, cortisol or aldosterone, or both. You didn't tell us what you are taking, synthetic T4 or NDT, or T3 or how much you are taking. Odds are it is syn T4. A little more info about what you are dealing with still would be helpful. I enjoyed your writing. PR

Truth42
Truth42 in reply to PR4NOW

Hi PR,

I'm on 150 Levothyroxine. The passing out, I believe, is micturition syncope caused by bradycardia, which can be a symptom of Hashimoto's. Glad you liked the piece and thanks. Ian x

PR4NOW
PR4NOW in reply to Truth42

Ian, I had to go look that one up, that was a new one for me. I asked CarolynB to talk about her response to adequate thyroid and bradycardia above, keep an eye out for her answer. She is right on point with all the things she covered to check. I would add one thing and that is a salivary adrenal stress test to see what your adrenal diurnal pattern looks like. Allopathic medicine is notorious for misdiagnosing thyroid symptoms as something else. Adequate T3 in vital for both brain and heart health. Depression is very common among us, as are other symptoms classified as mental illness. After my mother's first attempted suicide she was classified as a paranoid schizophrenic. She wasn't, she was just grossly under medicated on thyroid. As a teenager she had been diagnosed as 'weepy', crying easily is another hypo symptom, and put on 1/4 grain of Armour, and left at that dose for the next 50+ years. She paid a terrible price for the arrogance, the ignorance, and the incompetence of allopathic medicine. In the early days, late 1800s to early 1900s, they observed everything from mild depression to frank insanity and everything in between including auditory and visual hallucinations and a lot of paranoia, because of low thyroid. You might find, like many others, that some T3 would be a useful addition. A couple of sites you might find interesting.

recoveringwitht3.com/

A new book on Hashimotos which I've just started reading.

thyroidlifestyle.com/#!home...

Truth42
Truth42 in reply to PR4NOW

Thanks PR4NOW. That's really interesting. Very much appreciate your kindness. Ian x

Yes, I read it with great interest! Some of the symptoms you spoke of really made me think. I have had a handle on my hypothyroidism for a while now but some things still surprise me when I read them and think "that sounds just like me!"

When I was younger I was always really skinny. In fact I couldn't gain weight no matter how hard I tried. I was always nervous to the point of vomiting on occasion and always seemed to get a 'nervous tummy' at the slightest thing. I used to faint often too. Until I read your blog, where you mentioned how the thyroid can initially overcompensate, I hadn't connected these 'symptoms' with hypothyroidism. It wasn't until my late teens that I started having symptoms of hypothyroidism, which is when the fainting actually got worse due to marked bradycardia.

I was a 'burden on society' for many years due to the mental illness that went along with the hypothyroidism. Since getting my treatment sorted out a little more, my mental illness has magically disappeared as have several other long term 'issues'. It is amazing to be a part of the 'real world' again :)

Thank you for sharing your account with the world. Too many people see hypothyroidism as a mild illness that can be treated easily with a magic little white pill yet it is far more serious than that and often very much more difficult to treat.

It is great to see how you have recovered and are getting your life back. Long my your new-found health continue :)

Carolyn x

Truth42
Truth42 in reply to PinkNinja

Hi Carolyn,

Thanks for your response. Can I possibly ask what form your mental illness took? I hope I'm not prying but I have a reason for asking. Ian x

PinkNinja
PinkNinja in reply to Truth42

I was diagnosed (incorrectly) with schizoaffective disorder, which is very much like bipolar disorder and schizophrenia all wrapped up in one convenient bundle. This improved when I was given T3 to help enhance the effects of my antidepressants. Unfortunately, once I was 'well', the T3 was stopped and I ended up back in hospital for long periods of time. Eventually, I was diagnosed with hypothyroidism and given T3 again. Miraculous recovery! Unfortunately the NHS decided I had to take levothyroxine like everyone else and my problems returned. Because I was still being treated to some degree (although levothyroxine doesn't work at all well for me) my symptoms weren't as bad when they returned but I still couldn't work and had to take a whole host of pills. When I found Thyroid UK I was able to educate myself and now take dessicated thyroid. I'm not quite there yet but I don't require any medication other than my thyroid medication, my vitamin supplements and my epilepsy medication. I am starting to wonder though if perhaps the epilepsy is related to my thyroid. It did rear its ugly head around the same time...

I hope that helps and that I haven't gone on too much. I tend to do that :D

Carolyn x

Truth42
Truth42 in reply to PinkNinja

I also have a habit of droning on about my thyroid to anybody who will listen. I only ask because I've always been blighted by depression and mood swings. I've wondered in the last year how much my mood and the direction of my life has been governed by that bloody gland.

PinkNinja
PinkNinja in reply to Truth42

There is definitely a connection. Many members on here will agree to that. Unfortunately, many doctors only seem interested in treating the depression with anti-depressants rather than looking at the cause of the depression.

I was wondering if you have had your iron, ferritin, vitamin B12, folate and vitamin D levels checked recently. These are really important for your metabolism. Iron is needed for your body to get thyroid hormones into the cells to be used. A ferritin (stored iron) level less than 70 could indicate that you would benefit from an iron supplement (don't take within 4 hours of your thyroxine). The 'normal' range for B12 starts around 200. This is far too low! If you are not taking supplements, your B12 should be at least 500. folate should be well within range. Vitamin D is a hormone that is involved in something like 300 metabolic processes. Deficiency, and insufficiency, are very common in the UK so it is worth getting that tested. Deficiencies in all of the above seem to be remarkably common in hypothyroid patients.

B12 has been a big thing for me. I used to suffer with long bouts of vertigo. Since taking a daily dose of 5000mcg methylcobalamin (the best form of B12) I have not experienced any vertigo. Last week I ran out and had forgotten to order more so was without it for a few days. On Wednesday I had vertigo again and suddenly the link clicked into place. I am back on the B12 again and, after only a couple of days (rather than several weeks!) the vertigo has gone again. No doctor had mentioned B12 to me, or any of the others for that matter.

Adrenal insufficiency, often a result of untreated hypothyroidism, can also result in depression and mood swings partly because of resulting imbalances in other hormones and partly the abnormal levels of cortisol itself. It may be worth reading about 'adrenal fatigue' to see if this could also be an issue. Perhaps it's the missing piece of the puzzle.

I hope you find the missing 20% of your health. I'm sure when that happens your depression and mood swings will settle too :)

Truth42
Truth42 in reply to PinkNinja

My word you know your stuff! I've had some of these things checked but the advice is very, very helpful. Thank you so much. x

PinkNinja
PinkNinja in reply to Truth42

You're welcome. I've learned most of what I know from Thyroid UK and people on this forum. I don't know where I would be now if it wasn't for all of them. I might not be 100% but I am enjoying life again and I'm even working; something I was told I would never be able to do. I do like to prove people wrong :D

PinkNinja
PinkNinja in reply to PinkNinja

Here is the link to the main Thyroid UK website

thyroiduk.org.uk/tuk/index....

and here is another website I found helpful when I started taking dessicated thyroid

stopthethyroidmadness.com/

I hope you find these useful

Carolyn x

PinkNinja
PinkNinja in reply to PinkNinja

I have also made your link work. We are having a few technical issues at the moment, one of which requires you to put a space before and after links in order for them to work. Hopefully this issue will be sorted out soon!

PR4NOW
PR4NOW in reply to PinkNinja

CarolynB, what happened with your bradycardia when you were on T3 and how is it now on NDT? PR

PinkNinja
PinkNinja in reply to PR4NOW

I can't actually remember what it was like on T3; it was such a long time ago and I didn't make the connection. It is much better now on NDT than it ever was on T4. I have gone from having a resting heart rate of 35-45 to around 60bpm. I don't faint any more either :D

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