I have Hashimoto's and I am on 75mcg T4 and 30mcg T3. My last blood test results (taken on 23 of November) were:
Tsh <0.01 (range 0.3 - 5), FT4 9.4 (range 9 - 21), TT3 2.1 (range 0.9 - 2.5)
(Neither Dr's or Endo will test TT3, I have ordered a private test and will update this with the results)
I have been through many combinations of T3 and T4 and found that this combination made me feel great in May this year, but now I am feeling awful.
Other tests taken on 14/09/17
Vit B12: 315 Range (200-900) (I took the Solgar Sublingual B12 for a few months but it made no difference to how I felt)
Vitamin D: 79 (>50 adequate) ( I also took a vitamin D supplement for a while but it didn't change how I felt either)
Ferritin: 110 (15-200)
Folate: 13.8 (3.1-20.0)
Have been tested for diabetes and coeliac but don't have either of them.
So, I have struggled with fatigue for many years, but I think this is the worst it's ever been. It started getting really bad around September, I pushed myself to keep working but I had to leave my job at the end of November.
The fatigue just seems to be getting worse. Sleep doesn't help much. It's just as if there is no energy in my body. Anything physical depletes my energy to an abnormal degree. So, even a 15 minute walk would use up most of my energy for the day. Carrying anything depletes my energy, standing depletes my energy. I'm really struggling to do housework. If I do the dishes I then have to rest for half an hour. If I go into town and push myself to walk and stand then I can't do anything the next day as I'm too exhausted, even the day after that is affected. I'm really getting to the point where I'm thinking I might become housebound or have to someone in to help me in the house.
My attention and concentration is terrible too, I keep forgetting stuff, like to condition my hair in the shower, or I open the wrong tin of food for what I'm making to eat, I'm getting appointment times wrong, and I forget what I'm supposed to be doing from one second to the next. Typing this I am struggling to think of the right word for things and how to spell things.
I've been off work for 2 months now and I thought there would be some improvement but if anything I'm getting worse.
It just feels like something has gone wrong in my body. I just can't produce any energy. I sometimes feel like as if I'm dying, it just feels like something is very wrong, and I'm scared and I don't know what to do.
I saw the Endocrinologist last week and he doesn't know what is wrong either.
Having done some reading on-line it seems that what I may have is ME/Chronic Fatigue Syndrome. The symptoms seem to fit, especially the Post Exertional Malaise. The fact that I felt better on this dose of replacement hormone and with similar blood results, leads me to believe it's not my thyroid causing this. I am wondering if it could have been caused by pushing myself beyond my limits at work when I have hypothyroidism. That something in me just couldn't cope and it's caused these Chronic Fatigue symptoms.
I don't know what's wrong and I don't know what to do, does anyone have any thoughts?
Should I go to my GP and ask to be referred to someone who knows about ME/Chronic Fatigue Syndrome or is there some other course of action that would be better? (next endo appointment isn't for 3 months).
I've heard that getting a diagnosis can be a bad thing as then everything is put down to ME/CFS and there are still those in the medical profession and society who think it is 'all in the head'. But the thing is whether I have ME/CFS or it is chronic fatigue caused by Hypothyroidism, at the moment I am getting no support to deal with how limited my life is becoming and how much I'm struggling to cope. I would like to be able to access CBT to help me cope with what's happening and perhaps get help with Pacing. I think possibly a diagnosis would help me get access to this.
Secondly, I wonder if it would help in life situations/benefit situations, with the thyroid the expectation is that you are given the hormone and you should then be able to function at a fairly 'normal' level, going to work, etc. If I have a diagnosis of ME/CFS the one thing people understand about that (if they have any understanding at all) is that it makes you extremely fatigued. However, there is also the risk that with that as a diagnosis people who don't understand will be more dismissive. What do you guys think?
I know there isn't a cure and seemingly no way to get to the bottom of what is causing/has caused ME/CFS, and that it's really just a symptom of something that has caused it. But I just really need to know what's going on. If it's ME/CFS maybe I can begin to accept that this is how my life is going to be and begin to find ways to cope. I'm struggling with that because this isn't much of a life really. It's horrible.
I appreciate any input but I really can't cope with doing anything complicated at the moment, like going gluten free, I don't have the energy to look into things and organise things. I can manage going to my GP/specialists, and will argue for any tests anyone can think of, but that's about all I can manage right now. I know this is really unhelpful but I just can't right now.
Thanks for reading. I'll try my best to answer any questions although if I don't manage it please don't be offended. (I'm aware I didn't reply to anyone with my last post and that was because I just collapsed and had to leave work and everything was awful. I'm sorry about that).