I laughed (out of hysteria) initially, when I looked, last night, at the ‘Success stories’ tab and saw not 1 post?
Then I thought how depressingly sad.
So I decided to post mine. I wrote it out, rambled on, as I do, and hit ‘Post’. Nothing. It just wouldn’t post… in the end I gave up, late at night and needed my bed. I did copy and paste the story first onto another file.
I am so relieved today, to open up this tab, to see, that actually, there are stories here. Phew…that is a relief. It was just a blip somewhere in the systems.
So I shall add mine to the thread:
I'm not self sourcing or self medicating.
I consider myself to be one of the lucky ones, despite my decades of battling HypoT.
The first time I ever heard of HypoT, I was about 19. I had developed a goitre and my GP, admitting he did not know what it was so sent me to a very pompous specialist who dismissed me telling me to come back in a year?? I nearly didn't go, but as it had been inbred into us that Dr, and especially hospital appointments were so precious that I did.
For about two years I was back and forward randomly and intermittently, as they took blood and checked it.
I remember it being very 'daunting' and uncomfortable each time. I had to undress and put on a 'gown' - sit in, what was no more than a cupboard, with a door at each end. The specialist would open the opposite door and he, and his entourage would discuss me - between themselves, ignoring me. I remember their comment being 'there was something', 'there wasn't anything' throughout. Finally I was dismissed with a wave of a hand and the comment - 'don't bother coming back unless your Dr sends you, lack of iodine chaining from a girl into a woman' (condescending.....!)
I did go back to Gp some time later with same issue -goitre, he checked his file and said 'They could make their b****y minds up!' He sent me with a note to get bloods done the following morning whilst goitre present as this had been problem, would appear and disappear randomly, not appearing when bloods being done! But hey ho LGI did not have anyone on a Saturday morning to take blood.
It took me a further 10 years, and a number of other blood tests, to get a diagnosis of HypoT, despite increasing symptoms. That evasive blood test!
I was given...guess what...yep T4! And told I was lucky that it would be all I need.
I then spent 20 years trying to make T4 work.
I actually remember sitting in the surgery reading an article about hypoT, where people were saying how well they felt once given T4, I was there to tell the GP that T4 was not doing anything. Levels had been increased, decreased, several times. He told me T4 might not improve things but should stop them getting worse.
Any further symptoms that developed were assigned to anything but HypoT. Life style was the main 'excuse initially, after all I was a working mum etc...of course I was going to be tired etc. Depression was suggested, I even think they did give me anti D's at one point. I think they were placebo...no effect whatsoever. Anyway, eventually and not that long ago, they said it was my age. I said it wasn't my age 30 years ago!
I would get up, get the kids ready for school, luckily my neighbour would take them for me, and I would collapse on the sofa, at 8-30 in the morning...it was ridiculous. This was not ‘lifestyle tired’ This was chronic fatigue.
Over the years my health deteriorated. Eye problems started around the time of the goitre - dry gritty eyes, developed into conjunctivitis and then ulcers, which reoccur intermittently over the years. Migraines increased in frequency and disabling severity. Chronic fatigue was a nightmare. Fibromyagria was ruling my life. Everything hurt. I could not get warm, I had the myriad of HypoT symptoms.
I’d already found books by the Dr’s Lowe and Broda Barnes, I had read about the work of Dr Skinner and Dr Peatfield and Dr Myhill. I was following the problems they were having. I then found and read Dr P's book and could have cried. The case studies were like reading my life story. My teenage years had been plagued with underlying problems, including fainting fits - usually around a certain time of month. but not always. Sometimes I would not actually black out - I would be sitting with my head on my knees, hands hitting the floor, wide awake but unable to speak or move. I actually fainted on the alter on my wedding day...something that still gets brought up - not sure which one of us is looking for the' get out clause'!
Tonsillitis was another regular occurrence growing up - increasingly at times of stress - like my wedding - another story - comedy of errors! (30 years this year)
Dr P's book made so much sense.
I became more aware of the impact of certain foods and such and started looking to help myself, knowing that Dr's were not.
At this time I was fighting my way through a teaching degree, my dad was also terminally ill, living 140 miles away, so a lot of travelling. I also fought through some other horrendous, long term family stress.
My ability to concentrate was impaired. I was permanently fuzzy headed. My memory was disappearing fast. I started to have panic attacks and would go to pieces and be ill for days if anyone looked sideways at me. I started to suspect my adrenals were being affected.
We went on holiday to a Greek Island, we were assigned a room on the 5th floor. It was night, so dark. I'd just got on and off a plane. Yet as soon as I walked onto the balcony my legs went to jelly and my stomach churned. I told my hubby that we couldn't stay in that room. He thought I was joking. I could not explain it. It was just a totally debilitating feeling, I could barely stand,I felt so weak.
Luckily he realised I meant it and we were moved to the 2nd floor, with a canopy below our balcony, the following day. That first night the door was locked tight and curtains pulled!
I saw my GP and told him that after 20 years of trying to make T4 work and failing it was time I was allowed to try something else. I was told there was nothing. I told him there was t3. He said he couldn't issue it. so I asked to be sent to someone who could.
This idea seemed more palatable to him when he found out I had private cover through Hubby's job. But he sent me to a Haematologist, who made me feel like a couch potato ,and could see nothing wrong with my levels, even though my T4 level was way off the scale.
I went back to GP and told him I wanted to see an endo, his reply this time was that there was not one in the area? I pointed out I could drive and had a car. Why the reluctance??? I never understood this.
He also decided to check my cortisol levels before I went to the Endo. This, I was told, was 'normal, no further action' (Why does this phrase annoy me so?)
The Endo checked my cortisol again as he said 'actually it was borderline'. So he rechecked. This came back ok, so he issued a small amount of T3. This was increased once, and did help, to an extent, for a while. It was swine flu that floored me again. I went downhill fast...it literally felt like the energy was draining from me like water from an open tap. The Endo did not want to alter meds as 'looking at last bloods levels were very low'. Grrh!
He asked me to see a psychologist. I did. This chap agreed with me, medical not mental. TG.
But I'd lost faith in this Endo, and did not go back - perhaps with hindsight now, I should have - I often wonder what his next 'move' would have been.
Instead I booked to see Dr P. That was the best thing I ever did.
I knew I was struggling work wise. I could cope with the 8 -5 in the classroom, and 30 kids, the adrenalin would kick in. But it was the efforts outside this time, the 'spoons' would just run out. Trying to plan, mark assess, research and make resources, and remember what I was to teach the next day, took so much concentrate effort, it wiped me out totally.
Basically life got on top of me. The house was always a mess, Hubby worked long hours and the boys were boys, (still are) my day was just starting when I got in at 6pm...I just couldn't do it all.
Ofsted was looming and I knew I was having panic attacks in observation. I decided to leave, I just could not deal with any more stress and strain. The head persuaded me to go part time instead. But as things happened I decided to leave. I had to get my health back on track. Had I stayed I would have still had to endure observations and I knew I could not get through them at that stage. My nerves were shot. I left to hold onto any chance of being able to work again.
I had at this point booked to see Dr P.
Before I went to see Dr P, I saw our usual osteopath, who had seen us on several occasions for all the aches and pains. Often in shoulders, frozen neck etc…. things I’m only just realising are linking to HypoT. The Osteo suggested my problems may be my secondary nervous system , when I asked her what she meant she said my adrenal system.
When I saw Dr P, everything he said made sense. I did some private testing and it showed the adrenals were struggling and Dr P advised I get them sorted or would not get thyroid sorted. So working with Dr P for some months, I got my adrenals back up and running and gradually built in the thyroid meds and vitamins etc. I did have to restart the regime, a few times, until found the right balance and pace.
Every time I stopped T4 the symptoms of CFS/Fibro/Migraine disappeared, within days. When I introduced the T4 again. they reappeared.
So eventually I ended up on T3 only.
I will add here that I had told my GP that I was going to see Dr P, as all else had failed, and asked him to support me. He did. He allowed me the time and space to work with Dr P. He allowed me to adjust the medications to suit. And prescribed the increase in dosage till I found the right level. So although initially he was not ‘overly’ helpful and forthcoming, he did ‘step up’.
This GP saw the difference T3 made to me. Unfortunately he has since retired!
I started to feel alive, for, possibly the first time in my life, certainly in memory. I could think straight, I was not in pain or tired, the whole world started to look brighter. I could function like a normal human. I had energy!
The only downside was that the weight did not shift. But initially this did not matter I was alive!
I have not, in over 7 years, experienced palpitations or any heart problems on T3? Despite the scaremongering of medics.
About 3-4 years ago I joined Slimming World. I found it so easy. And 11 months later - Christmas, I'd lost 4 stone. I have never felt better.
So, with the correct medication, the right balance we HypoT's can be well again. We can have a life.
Whilst my weight is stable I've got some to lose again. I know why. more recent family bereavement and stress. I know that the knock on effect of low adrenals have impacted on the effectiveness of my medication, and until it is stable there is not too much chance of changing it, but I know I can and I will, when the time is right.
Nothing is perfect. And my adrenals struggle from time to time still, through stress. When this happens it throws the balance of meds out and it can take time to get it right again. But it is no longer the hopelessness of not knowing what is happening or how to fix it. I know better health is possible.
That is why I am passionate about fighting for better diagnosis and improving thyroid treatment for all thyroid conditions. I'm determined to promote the positive effects, of T3 that I have benefited from. And to fight, with all my ability, for choice of medication, to suit the individual, whether that be T4, T3 or NDT.
So please don’t give up. The right balance for each of us is out there. Better health is possible. So let’s fight for it.Let’s do ITT!