That's the question I am pondering over at the moment. Hope that some of you may be able to offer some wisdom – to help out, this is the story so far (this is long – very sorry!):
On 19 February 2015 I started to feel like I was coming down with a viral infection. There were things going round the office so this seemed normal. I was brand new to the job, so determined not to be ill three weeks in I put my head down and worked through it. Had to give in after a couple of weeks though, was very poorly and ended up having a week and a half off work, the GP diagnosed Labyrinthitis. I struggled back to work in March and just didn't feel any better at all. In April I went back to the GP and said I was still feeling very ill, almost 3 months, and what could they do.
My symptoms at that time were:
Felt like I had the 'flu – aches and very weak.
Very cold all the time, even in a warm room.
Tingly sensations in arms and pins and needles in arms and legs.
Lightheadedness / dizziness
I had gained almost a stone in weight without eating any more than usual (I was also fit and exercised regularly up until the point I became ill)
The GP, Dr J, tested TSH (among other things) and everything came back normal (B12, iron, calcium etc). I can't remember the actual TSH result but it was in normal range. Vitamin D was low, I was supposed to be taking calcium and vitamin D for osteopenia and had lapsed a little – oops. I returned to taking these properly and have done so ever since.
A friend of mine who's a qualified nurse told me to request more thyroid tests – including thyroid antibody tests. The next doctor I saw, Dr B, told me there was nothing really wrong with me, that I was depressed because I'd been ill for three months. Well... duh... of course I wasn't happy about it but I have been actually depressed previously and I know what it feels like, and even now (almost 9 months on) I know that I am not depressed! I have been on a gluten free diet since April 2012 (when I was diagnosed Coeliac) and so he then said I must be eating gluten and that's why I'm ill. There is no gluten in my house and I hardly ever eat out! Offended wasn't the word. I simmered for a few days and returned to a different GP for a second opinion.
This GP, Dr. T, tested me for thyroid antibodies, among other things. I left for my holiday knowing that I would get the results when I got home....
On 1 June I went to collect the test results. The antibodies were 253. The lab note said 'result supports a diagnosis of autoimmune thyroid disease'. Dr T said I was right, I had Hashimoto's and that I should thank my nurse friend. He started me on 25mcg Levothyroxine. I started charting how I felt from the start of June: initially I felt awful, so after a few days returned to the GP and he said to go up to 50mcg. He requested an endocrinology referral and a neck ultrasound. I also started taking a vitamin supplement that included selenium at this time.
I felt immediately better with a higher dose. This dropped for a few days then returned and I had the longest time of feeling good that I'd had for a while (2 weeks). At the start of July I started to feel poorly again. I felt that this was because I was on 50mcg and that I would need a little more. Dr T was unavailable – so I saw a different GP, Dr C. He said I shouldn't even be on Levo and that Dr T was wrong. He refused to give me more, so I waited for the endocrinology appointment in July still feeling unwell.
My husband came with me to the endocrinologist, as he had also been reading about Hashimoto's. By now, my symptoms also included:
Out of breath
Memory loss and muddled mind
The endocrinologist was rude, didn't answer our questions and contradicted herself. She told me I shouldn't be on thyroxine yet told me to stay on it, and to return in September. She said it was rheumatological and that I should get a referral. In the end she was refusing to answer us and just said goodbye with a beatific smile on her face. We were very upset and angry.
We both went back to the GP the next day and explained what had happened – we saw Dr J who had initially suggested a thyroid issue. He agreed with us and Dr T– and referred me to another endocrinologist and managed to get an appointment for me on 22 July.
This endocrinologist gave the same verdict, but was polite to us, understood our concerns and actually explained why I shouldn't be on thyroxine. He said until the TSH raises there is nothing they would do clinically. I do have a nodule on my thyroid gland (seen on the scan) but it's small, routine, and nothing to worry about. I pointed out information I had found on Thyroid UK about TSH being in normal range with Hashimoto's and (without using these words) said he thought that Thyroid UK's opinion on Hashimoto's was nonsense. He stated that autoimmune antibodies just mean I have a predilection for autoimmune diseases and for me that was Coeliac disease. He did say he would test me for Addisons and associated illnesses (these tests ultimately came back normal). He asked me to come off the thyroxine as he pointed out it would increase the damage of the osteopenia. He also said that anyone would feel better on thyroxine even if they don't need it and that explained why I had felt so well temporarily.
I returned to Dr T and explained what I'd been told. His body language suggested to me that he thought that this was nonsense but he couldn't voice that he disagreed with a specialist! He gave me an option – continue with the thyroxine and see what happens or come off it. Either way he referred me to rheumatology so we could rule that out. I decided to come off Levo, easing myself back down to 25mcg and then zero over the next 2 weeks. I did this because I was concerned about osteoporosis. It was 5 August when I came off the thyroid hormone.
Each month from then on I have felt worse each month. In August I had two separate weeks of feeling ok, in September 11 scattered days of feeling ok, and only 4 days of feeling ok in October.
Aching shoulders and arms have developed. I now have Insomnia and am aware that my sleep is poor due to a sleep app. However, I have also managed to lose some symptoms. I started going numb in my hands and face – once I recognised my anxiety about the situation and have got this under control these symptoms have gone. The pins and needles are also less frequent. I think this may be because my vitamin D is now at 100 and that I am also taking the multivitamin routinely. But the ache, fatigue, dizziness, poor memory etc are still there and are stopping me from being me.
I saw the rheumatologist on 8 October – he was very thorough and through testing and examination ruled out Lupus, inflammatory diseases and Sjogrens (my Mum has this).
Since 14 October I have been very ill – as ill as I was back in Feb-May. I have been signed off work since then. With nothing else coming from the rheumatology appointment Dr T has narrowed it down to CFS or Fibromyalgia. We are leaning towards CFS because the fatigue is far greater than any pain. On 19 Oct he prescribed Amitriptyline. First 10mg but now I am on 40mg. I don't feel any better at all. Which is what has led me to think that maybe we'd got it right in the first place....
Leaning towards CFS:
Some symptoms have changed. I've read of many people who have changing symptoms as they suffer from CFS. However, the increased vitamin D and selenium intake may explain the changes.
The fatigue is debilitating, especially at the moment.
I did have a tough year last year (Dad in hospital most of the year, my cousin's death, I was writing my Master's dissertation... and more) and this can trigger CFS. I took a short break from work due to stress in July 2014 and maybe this wasn't enough.
I have endometriosis and there is a high incidence of CFS among endo patients.
Leaning towards Hashimoto's:
There are a lot of people out there who have been misdiagnosed with CFS when they actually have Hashimoto's!
I have managed to lose some weight, but only by reducing my calorie intake to below 1000 calories a day. I am currently eating around this (I have no appetite) and staying the same weight.
I don't feel that this possibility has been explored properly. I don't think I should accept a diagnosis of CFS until I have pushed this one further. I accept that I walked away from it, but now I think I have ruled out most of the other options.
Having Coeliac already is indicative of additional autoimmune diseases.
Mum has Sjogrens – autoimmunity is in our family.
I felt better on Levo and increasingly worse each month after I stopped. Now back to feeling how I was at the beginning, when nothing made me feel better until I was on Levo.
Perhaps I should have stayed on the Levo when Dr T gave me the choice – but at that point I had been convinced by the second endocrinologist. My husband has not stopped thinking that it's Hashimoto's all the way through; I had to accept the words of the specialist so that I could move forward and rule out other causes. But right now I am back with a choice and I am not sure which one is most likely.
Has anyone else had the same situation?
Should I ask to try Levo again, and get further than 50mcg?
Does thyroxine make everyone feel better temporarily?
Is there anything else I can do to ease symptoms (assuming it's Hashimoto's)?
Have I missed anything I should be examining?
I eat healthily, gluten free because I'm Coeliac (I'm also vegetarian but eat lots of fresh veg and fruit, pulses and eggs). Don't have much salt, fat or sugar – only occasionally! My husband has to watch what he eats too so this is a healthy eating house.
I take vitamin supplement that includes: vit D, E, K, C, B1, B2, B3, B6, B12, folic acid, magnesium, iron, copper, zinc, manganese, selenium, chromium. I also take 2 x Calceos tablets (calcium and vitamin D) daily.
I've tried ginseng, but this made no difference.
I've just started vegetarian Omega 3.
I have an appointment with Dr T on Monday morning. We're both going, and I'm going to suggest that we revisit the autoimmune thyroid issue. I will ask for the thyroid measurements to be retested and I'll try and get an accurate record of what things have been previously.
Again apologies for the very long post but thank you in advance for your thoughts! Liz