Sarah’s Story

A few years ago in 2014, I found myself in a situation that had gradually worsened over the course of maybe 6 months maybe years. I don’t really like going to the doctors as I have found from past experience that more often than not they don’t know what is wrong with you and put it down to a virus, and I had been to the doctors with various ailments that were (I now know) thyroid related, only to be sent away thinking it’s just me moaning about nothing.

However I had to admit that in this case, I needed some help, I had become very tired; achy; had feet and back problems; my eyes were swollen; I spent most of my time feeling like a fog had descended on my brain and my IQ had plummeted as I found it difficult to understand complicated things; I was having memory problems (this one being a big concern as my Nan had alzheimers); finding it difficult to concentrate, and I started to notice a large lump in my throat. (all these things together did not help me being a Mum of two boys age 4 and 7)

I had heard my Mum say “you need a tonic” so many times and the lump in my throat was the icing on the cake and what finally made me go to the doctors.

So there were no doctors appointments available in the end, so I opted to see one of the nurses, and I am glad I did. She asked lots of (appropriate) questions, looked at my throat, and took blood to do TSH and T4 tests, and referred me for a scan on the large lump in my throat.

Usually, blood tests take up to a week to come back but within a day I had a call from the doctor with my results. My TSH was 100+ (‘normal’ range seems to vary but roughly should be between 1 and 4) and my T4 was 2.4 (again ‘normal’ range varies but roughly should be between 12 and 24). I hadn’t been put forward for T3, negative T3 or thyroid antibodies bloods and still haven’t. The doctor started me on 100mcg of levothyroxine and things started to get a bit better.

At this point, I had moved doctors surgeries to one closer to home and now was at another similar surgery where there were around 10 doctors working there so you may never see the same doctor twice. After another 4 weeks I had followed up bloods and my TSH was 36 and T4 was 15.8, so my tablets went up to 125mcg, another 2 months later more tests and TSH at 18.5 and T4 at 17.4 so tablets went up to 150mcg. (T3 was done on this one at my request and as it was ‘normal’ at 3.7 was never done again). I went to the hospital at this point as my appointment had finally come through and the scan showed nothing apart from my thyroid. At this point, the ‘fog’ had lifted somewhat and my memory improved and the lump in my throat had gone down. The aches had lessened but were still there, and I had come to terms with the fact that I was tired a lot and just got on with life regardless (had no choice really).

In Dec 2015 (four months later) my blood results came back as TSH 14 and T4 17 so tablets went up to 175mcg. Then in February 2016, my results were TSH 9 and T4 17 so my tablets went up to 200mcg. From this point onwards I started to feel a whole lot better and next to no symptoms remained, I was very happy.

I still had to have 6 monthly blood tests and the results came through at the lower end of ‘normal’ TSH at 0.05 at its lowest point in November 2012! They had stopped doing the T4 test as there was no point. But in October 2016 they decided that I ought to go down to 175 as my TSH results were 0.09 (higher than it was in November?!) and to get blood tests done in 3 months. So I did, and over the three months, not only did some of my symptoms start to return (the aching, cramping joints in my feet, aching muscles, tiredness, memory problems) but I now had new symptoms. The new ones included; really bad dry flaky skin on my face; feeling cold all the time; extremely heavy periods (I had always had heavy periods but they suddenly got longer and much much heavier with clotting).

Then in January 2014 my results came back as TSH 0.1 so again my tablets went down to 150mcgs (the doctor who advised me through a telephone consultation, said that if I started to feel bad again to go back up to 175mcgs).

Well over the 6 weeks I tried my best to carry on as normal but bit by bit ALL of my previous symptoms have returned, and the new ones have worsened. I got a bad cold during the 6 weeks which didn’t help but that aside I now have, very dry coarse flaky skin in particular on my face; a croaky voice; the muscle weakness with cramps and aches in my feet and hands (at times it is such a sharp nasty pain that it stops you in your tracks); I now have a very low libido; a low mood; memory problems worse than before; my eyes have swollen again; my concentration is bad (worse than my kids!) and I can feel the fog descending over me like a shroud again – feels like my IQ is slipping away.

Last week (March 2017) I had blood tests done again – the results came through earlier this week as TSH 0.06 – and I told the doctor (telephone consultation again) that I wanted to go back up to 175mcg as I was having so many problems. She said she wouldn’t advise it and the symptoms are probably unrelated and to make an appointment to get them checked out. I persisted and have got my tablets up to 175 again (I had to argue my case to get them back up to 175 when the previous doctor said if I feel bad to take them back up again??) with the proviso that if the symptoms don’t get any better over the next two weeks to go see someone there and take the tablets back down. I also had to agree that I was doing this against the doctor’s recommendation and was putting myself at risk of osteoporosis.

It has only been two days now on 175 again, so I haven’t noticed any improvement yet but I would imagine I will start to notice soon. I am now stuck not knowing who to turn to for advice. Why has my TSH gone down, when I feel worse than ever? My doctor’s surgery don’t seem to communicate amongst themselves and so all the doctors have different opinions, and as you don’t know who you are going to see from one time to the next you don’t know what opinion you are going to get.

I have also over the years had other problems such as problems with my feet – for which I went to see a bio-mechanic, had x-rays and ended up being told I had osteoarthritis in my big toes and badly positioned feet – had insoles fitted to my shoes to correct any problems I was having (and stop the agonising pains). I also had to see a physiotherapist about severe back problems and sciatica in my legs (again an agonizing pain). I also seem to get ill with colds very easily (I got a sore throat so badly infected a few months back that you could see a greeny/yellowy colour at the very back of my tonsils) When I asked numerous doctors if any of these problems might be related to hypothyroidism I always get the answer, ‘NO’. I have asked for T3 to be tested again (I have also recently found out there is a negative T3 and thyroid antibodies test that can be done – these have never been tested) only to be told ‘no, it isn’t necessary’, they know what is best. I have also questioned them why does he make of tablets change each time and can this affect me, to be told again ‘no’ it is irrelevant. There is no point in me changing doctors again, as one doctor seems to be much like the next (and I use the NHS, not private healthcare so cannot afford to just go private).

So I have a diagnosis, but it doesn’t seem to help, so I have decided that no one has the answers and that is why they say no so often. I am better off just keeping going the best I can, and doing what I think is best. Am I going to suffer from osteoporosis later just so I can feel better now? I cried on the way home from the shops two days ago, after my telephone consultation, at the thought that this is just the way it is now? Will these problems continue to worsen with age? Will anyone ever listen? Will anyone ever have any answers or help? Who knows.

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