Could I have ME/CFS?

Brain and nerves
1

Hello all,

I think I may have developed ME/CFS, possibly due to pushing myself beyond my boundaries when I have Hypothyroidism.

I was diagnosed with Hypothyroidism in May 2015 and I'm on Liothyronine and Levothyroxine.

I have struggled with fatigue for many years, but I think this is the worst it's ever been. I was doing okay back in April/ May of this year but then the fatigue 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 I maybe have ME/Chronic Fatigue Syndrome. The symptoms seem to fit, especially the Post Exertional Malaise. The fact that I felt better on the dose of replacement hormone and with similar blood results earlier in the year, 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 me to develop ME/Chronic Fatigue Syndrome.  Or that I've had ME/CFS for many years and developing Hypothyroidism has caused it to worsen considerably.

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?

I know there isn't a 'cure' and seemingly no way to get to the bottom of what is causing/has caused ME/CFS. 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'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?

For those who want to know my various blood test results, they are below.

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 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)

I have been tested for diabetes and coeliac but don't have either of them.

Thank you for reading, I'll try to reply to any questions, but please don't be offended if I don't manage to answer, I'm just struggling to do most things at the moment.

2

Hi Kittenmitt

It’s odd but someone in my family has your situation - but in reverse.  They’ve been diagnosed with ME and is currently trying NDT to see if the thyroid is part of the problem too.  They were diagnosed  3 years ago with ME/CFS and have controlled a great deal of the symptoms with total sugar free diet. So only eating meat, fish, veg nuts and some dairy - eggs mainly.  This has helped enormously.

I have hypothyroidism but not Hashimotos which I gather seems to bring more complex problems.  If I were you I would try to find out more about your condition and how best to control it’s symptoms.  I would like to give you the name of a UK website which helped me hugely to understand and treat my own hypothyroidism but I’m not sure if I’m allowed to.    I understand that NDT is the favoured way to treat Hashimotos.  I note you are taking T4 and T3 and assume you mean in tablet form.  Do check out the difference between this method and NDT (natural dessicated thyroid).  Taking ferritin, zinc, magnesium minerals is very important and also  Vit D, B12 and C.  You say D and B12 made no difference.  Much of the population in the northern hemisphere is deficient in D so it wouldn’t harm you to take it.  Not sure about B12.  Hope this helps.  Best of luck.  

3

Hi Sue, thanks for the reply.

I've looked into Hashimoto's quite a bit, which is how I ended up taking T3, the dr's needed a bit of convincing about it.  A website has helped me a lot with this, it might be the same one, if it starts with T and ends with UK then it's probably the same one   

Yes, I take T4 and T3 in tablet form.

Some people with Hashi's do fine on Levo, some on Lio, some on a combination, and some on NDT, so I think it just really depends on what works for different people.  NDT is something I may try in future, but right now I just have to work on dealing with this huge fatigue which has taken over.

I stopped taking the vitamins because I started getting nauseous and I wasn't sure if they might be contributing to it, I may try them again at some point in the future.

Thanks for the advice, I appreciate the support

4

Hi Jesse,  thanks for the reply.  I think in my case the Hashimoto's may be to blame, my immune system is reacting as if I had a virus, and if a virus can cause ME/CFS, then it makes sense to me that my body reacting as if it had a virus, could maybe cause the problem too.  It's as if my immune system has told my body to go into hibernation mode, like it would if I was fighting a virus, so right now I think I just need to listen and rest more than I have been doing.

I'm just guessing though, I'll have a look at the website you shared, all information is good at this point.

Thanks for the advice

5

Hi Kittenmittens -  Yes, thats the same website and its very helpful as you say.  It’s good to get more info too as you just need one person who says something which no one has thought of before to trip your switch if you get what I mean.   My relative is just starting NDT and we have our fingers crossed for him. I hope you manage to find the optimum treatment for yourself too.  I would have taken NDT but for now Levothyroxine is working OK.  All the best.  Sue