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Author Topic: Could I have ME/CFS? Could it be anything to do with having Hypothyroidism?  (Read 933 times)
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kittenmittens
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« on: January 26, 2018, 03:23:21 PM »

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 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)

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.
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roger
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« Reply #1 on: January 26, 2018, 04:48:51 PM »

Hi Kittenmittens, and welcome to the forum.

What you've described certainly puts what they call CFS/ME into the possibility frame, but we can neither diagnose nor comment on blood test results. But the fact is that you're clearly unwell and it's your GP's job to rule out all possibilities - via referrals when necessary - until he's left with CFS/ME as the only remaining option. So yes, push him/her to do his/her job.

If you do finish up with a CFS/ME diagnosis, don't think for a minute that there's no cure. Certainly, there's no magic bullet, but I was at the severe end for years, now I'm free of it, and the same applies to many others. So if the diagnosis happens, don't be despondent, be determined to get well.

Good luck and best wishes.

Roger.
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« Reply #2 on: January 26, 2018, 05:57:50 PM »

Hello there kittensmittens and welcome from me, to this forum.

Actually I am pretty much in the same boat as you are re both conditions, but being much older now (65) I don't have to go to work which makes life a lot easier for me.

I was diagnosed as hypothyroid some 20+ years ago, and at that point was on T4/thyroxine only for many years. My health declined slowly and eventually I ended up with the diagnosis of CFS/ME on top. Unlike you, it never occurred to me for one minute for years, that it could be my thyroid non functioning. Like you I eventually moved onto T3/Liothyronine, although unlike you, I did end up on T3 only for 5 years until the NHS caught up with me, and got me to try T4/T3 (it's a long story that I won't elaborate on here).

In my own case I have found it necessary to take more T3 than you are taking to feel reasonably well but I am still trying to get the balance right. It sounds as if you have done a lot of research in the past to try to check all supporting aspects of the thyroid as you have listed. I am not an expert in these things and the levels recommended but I can see they are not below range at any rate, but maybe not optimal in some cases (e.g your FT4 looks low to me considering the dose you are on, and I am confused that you have a Total T3 rather than an FT3 done?_ I have got a lot of my own support  and info via the forum on Thyroid Patient Advocacy. I know they proved similar support on Thyroid UK but I happen to prefer the former group. Have you been on these or similar to get information and help, other than the endocrinologist?

The other thing that I got checked a few times was my Adrenals via a saliva test - not done on the NHS of course but easily done at home though the cost is a dent in the income if you are not working. I found that quite helpful in my case as by doing it several times I could see that I had chronically low cortisol. I have tried various things to support mine with some success over time, but continuing stress (hard to avoid I know!) can of course not help with these issues. It is quite possible that you felt great in May and terrible now because something has shifted somewhere maybe with the adrenals or something else, but it's equally possible that like me and many others with both hypothyroidism and ME/CFS that we feel more human in the summer and like death warmed up in the winter.

I have other issues going on like migraines, gut pain and have never been certain what is what - ie what is the thyroid and what is ME/CFS and I have questioned like you whether I have something different on top. What I have discovered for myself is that I have a problem with my immune system, but that too could be due to the thyroid hormone not being absorbed properly. It's quite a puzzle and if you go onto thyroid forums many of the members will fiercely claim that there is no such thing as ME/CFS it's all to do with Hashimoto's. And if you go on ME/CFS forums then you will also find that MANY of them have thyroid dysfunction and low T3 issues (the American ones that can have that measured - as you may know in the UK you cannot get that measured so easily!).

There are pros and cons to getting it diagnosed as you say. It is easier to explain to some people that you have a problem by using ME/CFS and it may help ultimately with benefits applications, although I know that is another whole can of worms that I had to go through 4 times in 5 years before I retired. Also the Chronic Fatigue Syndrome clinics have to abide by the NICE guidelines (under review but will be a couple of years to come out), and the main 'treatments' are graded exercise and CBT and most of us believe that both are either useless or positively harmful (re GET mostly) and they don't add anything helpful to the mix. So, I guess it might depend on how good your local clinic is - some of them can be supportive and offer help with pacing etc. You can probably find the details of your local one if you Google, and then you could go onto the ME Association website and contact your local group to ask them what they think of the local clinic.



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Lordbark
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« Reply #3 on: January 27, 2018, 04:33:17 AM »

Hi kittenmittens,

I'm just trying catch up here today & saw your post so I wanted to reply as I can see you are having a rough time. I can understand where you say sleep isn't helping much. I can understand you feeling like your body has no energy in it as I tend to call that 'Going into Flat battery mode'

I can relate to how tiring just trying to basics are when you've mentioned the dishes Dad's had to do them for at least three days straight now since I've not had the energy or I've been asleep & or fighting health/pain. I really wish I could offer some words of advice for you. All I can really say it's important to listen to your body if you are needing to go into town for example maybe for food shopping could you do an online shop with Tesco's or Asda? So they can help by bringing things off the van to your kitchen? For none food stuff maybe have a look to see which shops you use have an online shop to get things purchased online then they can come in the post. That way you could save energy for other things you need or wanted to do.

If you are out in town & get tired a lot don't worry about stopping to rest I've found it's good to spread out things & stop to rest frequently or at the very least lean on a wall or lamp post to get breath back if getting very tired. Also I would say Chronic fatigue doesn't really go well with using buses either since you end up standing waiting or bouncing over pot holes. So if town is near enough could you get a taxi or even the train if your station has a lift to the platform? 

It would be a good idea to ask your GP for a referral to see someone about Chronic fatigue. It depends on how your GP is with things like CFS as some GP's are good & a few not so good with it. I was lucky when we lived in Chester as one of my GP's  there did a referral to Liverpool for their chronic Fatigue clinic there.

Maybe an idea would be to have a word with the practice manager & ask if there are any of the doctors there who have an interest in Chronic Fatigue & see who they would recommend you see?

I'm sorry I've not really got any more advice but I still wanted to welcome you to the forum as there are plenty of good members here so this is a good place to be.

 

 
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kittenmittens
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« Reply #4 on: January 27, 2018, 06:39:00 PM »

Thank you Roger, agapanthus, and Lordbark, I really appreciate the warm welcome and words of advice.  Is there away to reply to each of your replies individually?

For now I shall try and reply to you all here:

Roger, thank you, your words give me hope that maybe it won't be like this forever.

agapanthus, for some reason neither my GP or Endo will test FT3, I have just received a pack from medichecks to do a private test and I shall post that on Thyroid UK (I wasn't aware of the other forum you mentioned but I will check it out.  I have purchased some T3 and I may up my dose of it in the near future.  My T4 levels are low because I am taking a higher ratio of T3, when I was on Levo only mt T4 was much higher but I felt awful, so this is the combination I have ended up at.

I have found though that all the endo really seems to be able to do is provide blood checks and give replacement hormone recommendations, which is fine, but I have been offered no support for the huge impact the fatigue is having on my life, or how to cope, so that is what I'm trying to access now.

With the winter summer thing, the latest bout of extreme fatigue started in July and has got increasingly worse, increasing in September, and becoming the way it is now at the end of November , but as it started in July I'm not sure it's a seasonal thing, but I don't think the cold weather and lack of sunlight helps.

I'm not keen on trying GET, certainly not at the moment, perhaps I would give it a try later down the line, but right now I would like to try CBT to help me cope with the emotional impact of the way my life has become, and get some help with pacing.  I have been referred to the Intergrative Care Hospital in Glasgow, they mostly offer alternative therapies, but I'm hoping they can advise on CBT and pacing.  We shall see.

Thanks for your welcome and advice.



Lordbark,  thank you for the understanding and advice.  I already get my main shop delivered and do lots of my other shopping (such as clothes) on-line too, but sometimes I have to into town, I think I'm just going to need to be more aware of how much my energy is depleted by certain tasks, and put in a lot more rest time to deal with the fatigue afterwards.

I've just recently started getting taxis to places, I don't mind getting a bus if it is a frequent service (less standing waiting in the cold), and it gets me really close to where I want to go, but anywhere that involves standing about waiting for ages, walking any more than 10 minutes, or getting 2 buses, forget it, I'll get a taxi, or just not go to that place.

Unfortunately my GP is off sick and I don't know when she'll be back but I'm seeing another GP who I think might be alright, I know which GP's to avoid now after the long struggle to get my hypothyroidism diagnosed and treated.
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« Reply #5 on: January 27, 2018, 07:28:03 PM »

Hi again kittenmittens,

At the top of the main page there's a messages section where you can contact individuals privately, but I'm afraid you have to have done a few posts (sorry, I can't remember how many) before you can do it.

Mind you, you've done some great posts already - I really mean that - so hopefully it won't be long.

Best wishes.

Roger
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kittenmittens
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« Reply #6 on: January 27, 2018, 07:31:51 PM »

Thanks Roger, I really appreciate your kindness and support, it's just what I need at the moment.
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« Reply #7 on: January 27, 2018, 07:40:51 PM »

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« Reply #8 on: January 28, 2018, 12:12:20 AM »

Hi kittenmittens,

I'm glad you are already getting your main shopping delivered. At least that cuts down on the need to carry bulky bags on the bus. It's always a good idea to have a mental map in your head of where you could stop & rest for a few minutes as if I'm in Chester then my brain has a mental map of where I can sit down to rest. Getting more rest is important as you need as much as your body requires so don't worry about sleeping or just resting in general if your body feels the need.

You are doing the right thing being careful not to overdo long journeys as I used to do that in Chester when we lived there the hospital was two buses away so for getting there for appointments then a cab was more direct so at 5 each way it was a good way to save energy & not let my body's energy level get too flat.

That's the important part of not over pushing your body past it's limits as I've done that only for my body to rebel later on & totally crash out on me leaving me in bed for longer. I used to enjoy library visits but I had to stop those after getting tired carrying a couple of books so in the end I moved over to a kindle to save energy & fares.

One suggestion I would make is if you can do it if you take a bus into town & get a cab home? I was lucky being able to do that back in Chester as I was only about two miles from town. I can understand not going somewhere if it's going to take too long as I wanted to buy Dad a book from Waterstones at Christmas and found the only branch that had it was two trains away so I just ended up saving my energy by ordering the book online from Amazon instead. It was a third party seller so they were cheaper than the cost of my cab to the station anyway.

Ok it would have been a nice day trip to buy the book but health & energy just were not up to it.

I'm sorry your GP is off sick that's sad when they get ill themselves so I hope she will get better herself soon & feel well enough to help you when she returns. Knowing which GP to see & which to avoid is half the battle as the last thing you need is a GP being unkind or just unwilling to help as I've had that & it's made me reluctant to go in to seek help.

One thing I would suggest is looking into your local authority's concessionary travel scheme as if your body is getting more fatigue could you qualify for a travel card for the buses where you are in Glasgow Although I think those passes also give special discounted rates on the trains & subway too.

I was thinking that way it might keep costs down a bit better for you when you travel.

Sorry kittenmittens, I'm having a bit of a bad crash tonight with my body/health So I'm sorry if I've missed anything you've said. But please if you ever need a chat or anything feel free to send me a private message & I will reply as soon as I can as I know what's it like feeling rough with this Chronic fatigue so I wanted to try & help.

I hope today is going well for you.

Best wishes

Lordbark  smile       

 
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kittenmittens
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« Reply #9 on: January 28, 2018, 08:06:54 PM »

Hi Lordbark,

Getting a taxi back from town is a good idea, although the bus or subway takes me nearly to my door, but, yeah, I must remember taxis are an option.

I thankfully have a bus pass already, which is absolutely fantastic, s I can get a bus 2 stops if I need to (and I do do this) without having to pay for it.  You do indeed get a discount on the subway and trains too.

Yeah, with GP's, I was going to a different one when I'd just been diagnosed with Hypothyroidism and wasn't even near to being properly replaced.  I went to her saying I was still tired and depressed, and she told me to "stop being so self obsessed"!  She made me cry, so I just never saw her again, for anything, if someone doesn't 'get it' then I just don't bother with them.  I was upset at the time, and I've been super angry over my treatment, but now I just figure out what I want and need first and then go in and fight for it, nobody's going to make me feel like she did again.

I'm sorry to hear you're having a crash, I hope you're feeling a bit better today. 

I appreciate the support, it really means a lot, but make sure you are looking after yourself too.
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« Reply #10 on: January 29, 2018, 12:39:21 AM »

Hi kittenmittens,

I'm glad getting a taxi back from town is a good idea Just don't do what I did once in Chester once I had my library books with me & didn't want to try to get over to the rank for a black cab so I called my regular private hire firm and booked a car through them but silly guy here goes and asks to be picked up in the worse place in Chester City Centre I had asked to be picked up by the old Odeon Cinema which is all one way into the old bus station so thanks to me I end up causing a mini traffic jam while I get myself & books into the cab as in the few seconds it took there must have a been a fair few irritated bus drivers stuck behind my cab. That's why I just used to try & finish at Tesco after that and use the Freephone to get a cab home that way.

It's good about the buses & the subway though at least that way you don't end up sitting in traffic watching the meter climb ever higher. That was one of the good things about when we lived in North Wales as although the cabs had meters the drivers always used to charge below the meter rate if you had phoned to be picked up.

I'm glad you have a bus pass already. I did have a bit of an explore on the Strathclyde transport website & found out about how the passes work. It's nice too that people can use their pass to get cheaper fares on the ferry if they live on one of the islands in the Strathclyde area. I think you maybe able to do that even if you are visiting one of the islands you can still get a discount on the ferry. (As long as I'm reading the website correctly.)

Getting the bus two stops I've done that in the past. It was useful once when we moved house a few streets away back in Chester we did a house swap & I needed to get to the new house so on the day it was useful just getting the bus up the road to save energy.

The discount fares you can get on the subway & trains is a good idea too. That's a good way to help with journeys without huge fares to think about.

I'm really sorry the GP said that to you as you were only asking for help which is their responsibility to help all their patients no matter what is needed. What wasn't needed was a poor attitude from a doctor who didn't care. I've had similar doctor encounters like you have & it's really annoyed me  Since I have other health conditions as well I had one GP turn round & say 'You shouldn't have to worry about your health as people with your conditions don't tend to live for very long anyway'

Needless to say we changed doctors pretty fast after that. Even then it took us another two practices to get into a decent doctors surgery. If we hadn't left Chester we might have still been with them. But I do keep in mind there are still plenty of good doctors out there it's just that sometimes they are hard to find.

Well done for not letting the few bad doctors win you've got enough to cope with without any negative stress when all you've asked for is help. As you already know the key thing is 'Don't let them win'

I think for myself that negative views from doctors sometimes is what has discouraged me from seeking further help. I end up not going in as I think I'm just wasting their time & I could be saving energy for doing something else instead.

I don't blame you for being angry with how you were treated. As that makes me think of the negative encounters I've had sadly not just from doctors but from other medical staff too.

But to balance this I have had some excellent help still too from a really caring Health care Assistant on one of the medical wards once right up to my current neurosurgeon.

Thanks for your kind words over my health having a crash it's basically a combination of the Chronic fatigue added in with pretty bad stomach related problems & a fuzzed up head. I'm not doing too bad but still feeling rough at the same time if that makes sense?

But hearing from you has helped me feel a bit better too. So honestly a big thank you for your kindness & support.

I do hope you are ok yourself today?

I hope you've had a good weekend?

Looking forward to chatting again soon.

Best wishes

Lordbark  smile


           
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kittenmittens
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« Reply #11 on: January 29, 2018, 03:56:48 PM »

Hi Lordbark,

That is so awful that a Dr said that to you.  It's sometimes as if they forget we are people.  I'm sorry you had to deal with such an awful person.

A possible way to get a  good GP recommendation can be to ask on forums to see if anyone in your area can recommend a good one.  That's what I did on the thyroid forum I'm a member of, when I was looking to switch endocrinologist.

I'm glad you're doing okay even though you're feeling rough.

I'm okay, much the same, just tired.  My weekend was not bad, I saw my family which was nice, although it was tiring, listening to people and having conversations can be surprisingly tiring, worth it though.

Kittenmittens
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« Reply #12 on: January 29, 2018, 04:18:52 PM »

Hello again kittensmittens. I am surprised that you cannot even get an FT3 done by the endocrinologist. I have not had problems on that score, only at the GP, but then the NHS are actually prescribing me T3 so it would be pretty bonkers if they didn't do the test at all.

I get the impression that you don't get NHS Liothyronine supplied - is that correct? If so, then I guess that would be your answer for the reason why they won't test for it. There are a lot of politics involved as you probably know in the whole T3 scenario, with multiple CCGs refusing to supply it, and by not doing an FT3 test then they can claim that it's not an important test I guess. We know different.....

Sadly the Endos in my experience haven't got a clue on what to do with people who are still ill once they have given out their useless Thyroxine. The first Endo I saw threatened to just send me back to the CFS unit once he had done all the tests and as far as he was concerned they were normal. I am not sure if he allowed me T3 (only) to get me off his back. He did not want me back to see him as it was Plymouth and I live in the west of Cornwall, but he didn't suggest I went to Truro instead. He's moved on now anyway as it was over 5 years ago.

The next Endo I saw was in late 2016 and he freaked out at my suppressed TSH and sent me off for a bone scan which unfortunately showed I had osteoporosis. For the next year  or so, he, and then another Endo, when he moved on, tried to get me to drastically reduce my T3 usage, blaming my osteoporosis on the T3. Never mind the fact that my health drastically crumbled under their 'care'. The thyroid nurse I saw even told me cheerily that I would feel worse as I had been overdosing (despite having no other signs of overdose).

From July to Oct last year they had me on a gradual regime of taking the T3 to 20mcg and the T4 up to 75mcg. Within weeks my immune system was almost permanently in cold virus state, even though this was the summer. By Dec I had had 9 viruses. In the end I put my foot down and told them I was shifting back up to 25mcg T3, intending to discuss it with them, but with that I got a letter from this ghastly thyroid nurse who said I was discharged back to the GP. Since then I have avoided seeing the GP and have increased my T3 up to 45mcg and my T4 down to 25mcg. I get that it's a risk re the osteoporosis, but I have to have some kind of quality of life now, and the patient groups all disagree with their assessment anyway.

That sounds excellent to be referred to the Inegrative Care Hospital - probably the best you are going to get on the NHS! I do hope they can give you some decent support. I am not totally against CBT actually as long as it's not seen as a 'treatment' for ME/CFS but rather as a help for the obvious emotions that you end up with. I have had a lot of anxiety recently due to the rather frightening eye ops I have had recently, so have thought I might ask for some to help with that.
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« Reply #13 on: January 29, 2018, 07:35:54 PM »

Hi Agapanthus,

All the GP will test is TT3, the endo also tests for TT3, they both say FT3 is of no use.  I'm not sure if it's because I'm in Scotland, but TT3 seems to be the norm here (not sure if any other Scottish members have experienced this).   The endo has now said he will do a FT3 test (after asking him repeatedly), but I need to phone him before I am due to come in for my appointment so that he can make a special arrangement with the lab.  As my next appointment is in 3 months I decided to just get a private test.

My Lio is supplied by the NHS  (that was a battle!), and they do test T3, it's just they do TT3 not FT3.

I'm sorry to hear you've had to battle with the Drs and nurses too, at the end of the day it's up to you, you know the risks and benefits, so you should be able to make that decision.  And I totally understand what you are saying about needing a quality of life, before I got on the T3 I was so depressed and unwell that I didn't really care about the risks they were telling me, I just wanted to stay alive at that time, and have some sort of life.

Getting some help with anxiety is always a good idea.  Anything that helps really.
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« Reply #14 on: January 30, 2018, 01:08:25 AM »

Hi kittenmittens,

Thank you so much for your kind words about that doctor. I think to be honest that was just a sign of the practice concerned not being a very good one. We had only gone there to try being closer to get to appointments rather than having to go into the city centre like we had previously. But that's not excuse for any doctor to make comments like they did to you, me or anyone else as they need to remember we are all human & will sometimes need some help.

That's a good suggestion about the way to find a good doctor & one I will have to look at doing once we move (We just need to save up for that first)

Today has been weird but rough too CFS flair up but body refusing to even sleep then when I try to say 'Ok you obviously won't let me sleep.' I get out of bed then when I come back in the room & decide to lye back down for five minutes  my body then decides to basically turn everything off & oversleep.

I'm glad you had a good weekend & were able to see your family. I can understand how tiring it can be with conversations though. Not really had that with family it's mostly for me if someone like a cab driver tries to engage in a long conversation sometimes I'm just really drained afterwards.

   
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kittenmittens
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« Reply #15 on: February 04, 2018, 09:35:55 PM »

Hi Lordbark,

Sorry for the delay in replying, an energy crash combined with too much to do just left me exhausted..

I think with Dr's it really just depends on the individual Dr (or other healthcare worker), and if they 'get it' or not.  Some, just don't have any clue at all what people are going through, some have no empathy, some are just not particularly great human beings.  On the other hand, sometimes you come across the ones who do get it, and are understanding, and do want to help.  It's just persevering until you find the right one.

I find making small talk with strangers completely exhausting, I haven't been to a hairdresser in about 14 years and that's one of the reasons.  Taxi drivers are the same, I hate getting taxis, I wish I could just say, "Hi, I don't want to be rude but I have a limited amount of energy and I can't afford to spend any of it on a conversation right now", but I'm too awkward to say such a thing, I just politely take part in the conversation and hope it peters out, then I worry I'm being rude and start a conversation to make sure I'm not being rude! 
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Lordbark
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« Reply #16 on: February 09, 2018, 12:43:35 AM »

Hi kittenmittens,

First of all let me say sorry for my very late reply. It seems my health over the last few days has decided to do a major crash out on me. Plus some days it's given me more headaches with eye pain so I've had to get more sleep to try to get my body to do some repairs on itself. I'm just trying to catch up now.

Don't worry about delays in replies as you've seen with me I'm running very late in doing replies & just trying to get caught up now. I do hope you are ok & getting some rest with all the sleep you need?

I think you are right with doctors & healthcare workers as some get it, some don't others might not have time or they might want to help but for some reason might not have the skills or knowledge they need to be able to do so. I still remember one time I was in hospital & there was a lovely kind healthcare assistant on the ward & she & I got talking as she helped me & she pretty much diagnosed my Chronic fatigue before the doctors did.

Weirdly I wasn't in hospital for the Chronic fatigue I was actually in there for something else basically my neuro condition got worse so they were doing tests & scans but that must have made my Chronic fatigue kick off worse which is what the kind healthcare assistant picked up on.

Weirdly enough I'm ok & enjoy with chatting with the hairdressers I go in to see as we can have a laugh & a joke mostly down to the fact my hair seems to grow very fast between visits. (Which reminds me I need to go back & get it cut soon.) Would you believe it's basically a year since I was able to get it cut last? But that's down to fatigue & health crashes that have stopped me getting it done yet.

But the way I see it when I leave it to get it cut once the hair gets cut it lasts longer before it needs doing again.

Either that or I need a hedge trimmer or mini lawnmower to cut it instead.  lol

I think most cab drivers would understand since as long as they know where to take you they are happy & it doesn't need a long chat sometimes just the odd thing here or there lets them know you are still engaging with them.

The bit that annoyed me more with cab drivers in the past are the ones who were on their phone the whole ride or else near the end they started tapping away on their data terminal in the car to get ready for the next fare. But to be fair that's only happened once or twice. I think my main bit of advice is always save energy that's important as the more energy you save the more you have in reserve for the things that really matter for you.

Energy is like a bank or even a pre-paid top up card it's better to go careful when your body tells you to otherwise your energy balance runs out & you risk a crash.

Please don't feel bad or awkward about anything you need to say to anyone as most will be more concerned that you are ok rather than making yourself ill or feeling worse with fatigue.

I do tend to keep chat to the minimum sometimes as long as I just make the odd comment then most cab drivers I've had are happy & most are anyway especially if I've made them laugh about something. Like the time I bought a stuffed toy dog for my brother & took it home in a cab & the driver was laughing saying 'We charge extra for dogs'

I do hope some of what I've said makes sense as I'm kind of in a crash mode right now as my body is tired typing but I still wanted to reply so you know I'm still here & thinking of you.

I do hope you are ok & you are having a good day.

Looking forward to chatting again soon.       

 
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kittenmittens
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« Reply #17 on: February 09, 2018, 04:52:45 PM »

Hi Lordbark,

Yeah, when you find the healthcare/social care/etc worker who just gets it, it is great, they can help so much.

I think of my energy like a budget, and if I push past my limits that's like going overdrawn, and I'll need to pay it back, and good sleep and rest are like putting money in the bank, using energy is spending it.

Sorry I can't write much at the moment, I'm already somewhat overdrawn and still have things I need to do today like make dinner, but I will rest tomorrow.
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Lordbark
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« Reply #18 on: February 23, 2018, 04:20:57 PM »

Hi kittenmittens,

I'm really sorry for my very late reply as my health has basically done the same thing & crashed again. So I wanted to reassure you I wasn't hiding or anything & still wanted to reply. I think finding a good healthcare worker who gets how their patient is feeling or what they are experiencing is always a good thing which is why I know we will be looking at reviews of doctors as well as hospitals when we start looking at doing the house hunt later this year.

Looking at your energy level as a budget is a good way to do it & it helps that way to keep everything functioning within reason of what health & body allows as like we both know if a major crash happens then it's like a flat battery so sleeping & resting is like plugging yourself back in for a recharge.

That's why I'm still not here as much as I wanted to be as my CFS has teamed up with my stomach related health symptoms causing an extra bit of a crash.

I do hope you are ok & getting all the help you need? I know you must be drained yourself too so please make sure you are ok & resting.

I'm sorry this is so short but I wanted you to know I'm here & thinking of you & everyone else here on the forums too.

I just hope everything I've typed makes some sort of sense.  smile   
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