Rough journey through health

Back in May this year I had had a few weeks feeling a bit rough, not really myself. I pretty much ignored it and carried on, occassionally taking pain killers if needed. This didn't seem to be anything more than a passing virus at the time.

Eventually, towards the end of May, I began to struggle more and I felt something was wrong. I went to my surgery and requested a thyroid test. They were fine with it and took the test. Three days later the results were in and I rang up to find out what they were.

The receptionist said they were odd as one result was high and one was low, that didn't make sense (please bear in mind I knew nothing about tests at this point). I was suprised since I thought they were only doing one test, not two. She duly gave me numbers, which were TSH 4.9 (0.35 - 4.5) and FT4 10.4 (11 - 24). I thought about this and wondered why they had come back that way so started a little investigating on the internet to get some ideas. I was, needless to say, shocked to see I was Hypo. I knew nothing of hypothyroidism so spoke to the nurse on the phone. She stated catagorically to me that I wouldn't be getting any symptoms with such a borderline result. Well, that tore it. I was upset since I felt rough and seemed to be getting worse, so made an appointment with a gp at the practice.

I had my mother accompany me, along with a written list of my problems. I saw a locum doctor and he was quite helpful. He suggested further blood tests and a chest x-ray for my cough, which were duly taken.

The results of these came back but the locum had left so I had to see another doctor. This time the gp was not so helpful. She mentioned a raised rheumatoid result but said as I was showing no other signs it just meant I was more likely to develop it when older. This seemed fair since both my mothers sisters have it. She then told me everything else was normal and my symptoms were, therefore, of no consequence, reiterating that I would not be symptomatic with thyroid with my borderline result. She ignored my cough entirely. There was plenty more to that visit too, including a suggestion that I didn't do enough exercise and needed to go on a diet! I might add that at that time I was eating 1200 - 1400 calories a day on the exercise levels I mention below.

I left there upset with her attitude but had agreed to try a pain killer that would help me sleep and deaden the pain. I took one that night. I didn't take any more. The effects were disasterous. Not only did I still feel every bit of pain, I was unable to function at all, was in dire pain, worse than normal and just wanted to sleep. Impossible as a single mother with a special needs son (he is 18 but I am his only support) and a 15 year old daughter.

I was then put on paracetamol and codiene combo which I took every 4 hours. It did dull the pain but I was still getting worse. I was doing far less than normal (Prior to the downhill slip, I was doing in excess of 20 miles walking a week and hard cardio-vascular exercise once a week for 2 hours.) Now, walks were reduced to less than half my normal but I was stubbornly continuing the cardio-vascular work.

I went back to the doctors and saw yet another gp, who immediately picked on my acid reflux and the cough. He prescribed for the acid and took a sample of my phlegm. A few days later he rang up to tell me I had a bacterial infection and I needed anti-biotics.

The following Tuesday the previous, female doctor rang up about the result. I informed her I had been prescribed anti-biotics already and went on to tell her I had had to stop the pain killers due to severe constipation and headaches. She was totally unintrested and blamed my returning pain on the infection. Naturally my feelings towards her were not improved by this attitude.

I made yet another appointment, hoping to get the doctor who seemed on the ball but was informed he was off on compassionate leave (I'll leave it at that) and wouldn't be back for at least a fortnight. I made an appointment with a different doctor in the hopes they would be better than the female gp.

So last Friday I met this gp. I told him a number of things that had been happening and explained that I was doing even less, finding small walks hard and getting recurring symptoms of cystitis every time I did too much. Too much now meant a tiny walk or a small swim (I say swim, more of a float in the water for 10 minutes) and the pain was almost unbearable. The cardio vascular exercise was no longer possible and everything was taking considerable effort.

He spent a great deal of time looking at my last blood results and said many of them had come back high or borderline and obviously my thyroid tests were an issue. He suggested that they were repeated, along with all the results that were not ideal along with extras. He asked me to start taking paracetamol again and use ibuprofen gel to help with the pain, as I cannot risk too much in tablet form due to my asthma.

Those tests are being taken tomorrow morning. Once I have the results I will post them up. This continuing saga of just the last few months has been horrendous for me and my family. I have always been a fit outdoors type of person, and although I am by no means slender I am also not huge. I felt excellent before this kicked in and liked to do walks that were sometimes 12 miles long at a good pace without any difficulty. I could do that the day before my hard workout and swim miles in the sea the day after. Now any strain causes my body to cringe in pain and exhaustion.

I can only hope some idea of my problems are discovered in the next tests as I feel my life has halted over the last few months. I am devasted and really want my life back.

I will continue this blog once there are further developments.

Sorry for the length of this.

Additional. 10/07/2013

So I had the blood taken Monday, three vials worth. I will be intrested in the results, which I will get next Monday.

Sadly have not had the best of weeks so far. Despite being careful about how much I was doing, my body decided it was still too much and reacted badly. I spent yesterday/last night in considerable discomfort and didn't get to sleep until 3am. Less than 4 hours later I was up again. I took myself down the doctors as soon as they opened and came away with antibiotics in an attempt to calm the symptoms. Having slept for a few hours this afternoon I feel a little more human but still so very tired and uncomfortable. This heat really isn't helping as it's so hot even in the night. I'd do anything for some rain or a cool breeze. I'd swim normally but my body simply cannot take it at the mo. Even the cats are finding it too much.

Still, will be having a day indoors tomorrow, doing very little. Hopefully it will make me feel a little better.

9 Replies

  • This lot really saw your T4 was below range and they did nothing? Borderline result? How are you supposed to manage with this below-range level of T4? But they are too locked into the TSH result (and that is also beyond the range limits) even to look at anything else. Have tomorrow morning's test by all means, but in my opinion you must push hard to be referred to an endocrinologist as these GPs are blind to what is actually going on and so cannot be trusted to act appropriately.

    You have demonstrated raised TSH and low T4, that looks like Panel 5 in Colin Dayan's Interpretation of thyroid function tests. Type in any search engine: Interpretation of thyroid function tests by Colin Dayan, choose the link to the Keck School of Medicine, only one I know of where you have free access to this paper.

  • Thank you for your comments. I looked at that article and I realise completely that I show clearly for hypoT but until the second results are in I cannot see anything happening. Even then they may not do anything. But I live in hope that will finally act not just on results (of which I have plenty which are anomolous, not just thyroid) but on my degrading health and obvious ill health.

  • You might need to read this, takes you to the current guidance for doctors, interesting reading.

    You are entitled to list your symptoms and require that this list be put on your file.

    If they will not start treatment then you can write and ask for a reasoned explanation for this.

    You are entitled to ask to be referred to an endocrinologist.

    Above might help.

  • This link was posted by LizaSahara on Saturday 6 June, looks like you need it, please read:

  • I couldn't access this without signing up. Did read the comments and the summary though and it seems to me that everyone has a different idea about the thyroid and how to manage it from testing to treating. Worrying really.

  • I know where your at and can empathise with everything you have said ..... its not a nice place to be especially when no one listens to you or even cares.

    Its upsetting in itself that you can see and feel your own health deteriorate and theres nothing you can do to stop it.

    I eventually had to change my GP before anything was done to help me ( at my surgery you get an allocated GP ) my daughters surgery seems to be a bit like yours and she now requests which GP she wants to see, maybe you can also try requesting/ insisting which person you want.

    After doing this I was sent to see an Endo and I go and see him again on Thursday

    After so many blood tests I have lost count just how many ...... I'm really hoping and praying he has answers for me after all this.

    I know its hard to fight when you feel so ill , but do it don't give up, eventually someone will listen ... even if you have to change surgery.

    Chin up .. be kind to yourself for now leave the energetic stuff like cardio until you feel better and try an Aromatherapy massage instead.

    I wish you all the best


  • Morning and thank you for your replies. I will check out that link later nostoneunturned, thanks.

    This morning I had my non-fasting test done. This time three vials were taken and they're checking a number of areas including thyroid, inflamation, antibodies and a full blood count, again. The antibodies has never been done before so that should be intresting. I actually feel reasonable today, which is good as I have to go shopping. I go back next Monday for the results with the doctor, same chap that ordered them this time. Hopefully the tests will show something and I can be treated so I can get back some of my life.

  • Good to know that they are investigating more thoroughly as you have persuaded them there is something adrift.

    Interesting that signing up is needed when following the link above, but when following LizaSahara's link in her post the whole article is there to read with no signing up!

    I'll try again with a link this time to Liza's post in the hope that you can access the article, if need be, via her post and so to the article which has a very interesting table in it showing pathways for treatment, if you need to pursue this if you do not get treatment/referral to endo.

  • Hi I know how you are feeling I am having the same problem with my gp. Like you I am feeling tired, joints painful etc etc etc and I have had different doctors with different opinions. I like you are so fed up. I have had a blood test today and await results. GP seems to think its my change its laughable watch this space. I hope you get sorted soon ok. Keep us posted xxx

You may also like...