Off sick...again! thyroid, puffy face, what do I do?

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Off sick...again! thyroid, puffy face, what do I do?

Postby cocobella » Mon May 27, 2013 10:18 am

Hi all again!! On here for more ranting and more sympathy begs lol. :yikes:

Posted last week, I was dx back in february with fibro, after suffering intermittent symptoms for 2 years, then from November 2012 up until now my fibro symptoms had become disabling. Alongside severe joint pain, depression (for NO reason), weight gain, brain fog etc etc.

As I am only 26 I found this very difficult to cope with and it has been a bit of nightmare :evil: for my family, other half and friends as I have become very unreliable and generally insular. Which isn't like me. Anyway, just last week was diagnosed with quite significant hypothyroidism, TSH was at 7.5!! Apparently that is pretty damn low! GP thinks it is the Hashimoto's form (not sure if this is what most people have?) and I am getting the thyroid antibody test repeated. I had showed positive for this in the past, with a normal TSH, therefore my symptoms were dismissed. I have a multinodular goiter which has been visible for about a year, however TSH was always showing normal in my blood which was very frustrating as I had typical hypo symptoms alongside fibromyalgia and GP & consultants only go by your blood. My face was/is puffy, around my eyes and my tongue is scalloped and very swollen most of the time - this is very noticeable as I have always had quite a thin face with high cheek bones ;-) but they are not visible just now due to this moon face :( . I have had these symptoms for about two years and have seen an Endocrinologist at local NHS hospital who was very dismissive and not interested as my TSH was normal!!! He also told me to get my Nexplanon implant removed from my arm (which I got for extremely heavy periods - probably caused by hypothyroidism lol). He said it may have been causing my joint pain. Got it taken out, then suffered with two months of unbelievable periods, PMT, Acne on top of the fibro - I was a raging hormone!!!!!! lol needless to say the fibro and joint symptoms did not subside. Moral of the story, never listen to a man when it comes to periods and woman things lol.

So, I then obtained advice from a sexual health consultant who said she has never heard of the nexplanon implant causing joint pain throughout her 10+ years of experience and she said if I was suffering from these awful periods and nexplanon was helping I should never of had it taken out as it was clearly doing it's job - she then put another one in. She also mentioned due to my strong family history of thyroid disorders that it was more than likely that was causing things.

I honestly feel that in the NHS (well in my area anyway) there seems to be a major lack of doctors within their specialities communicating with other doctors. They tend to stick to their own specialities and do not delve into communicating with others when it involves a complex patient. My endocrinologist and rheumatologist have not exchanged any correspondence with regards to my case or symptoms. Anyway rheumy has now said there has been no sign of inflammatory arthritis and she is convinced it is purely fibromyalgia (received that letter a few days before my hypothyroidism result came through) and she now wants to discharge me from rheumatology, she is the one who put it in writing that I had fibromyalgia. I sort of feel that none of these consultants are taking responsibility for me and keep shooing me away!!! so then I am left to just fester at home and told to contact my GP for advice, who quite frankly is too busy and not interested.

I am now off work AGAIN this is my second week of being off (I was off for 3 months from January). Returned to work for a month and obviously had a failed phased return. My boss / employer (NHS) have been fab and have completely accommodated me and been really kind. However, at the moment I cannot even manage daily tasks let alone go to work. I am pretty much spending the day in bed, doing a wee bit of cleaning i.e. loading the dishwasher, brush my hair, then have to rest again. I started 50mg thyroxine last week, and do not feel any different, I move up to 75mg in 3 weeks. The past two weeks have been horrendous with fatigue, extreme joint pain, fibro pain - and the only thing that is helping is dihydrocodiene, it is the only thing that is kept me functioning and able to get out of bed to do simple things like answer the phone, check emails and shower!! I honestly think that because my thyroid is clearly not functioning, it is wreaking havoc with my body. My brain fog and fatigue is so bad at the moment that I cannot even read a book just now - which means going to work for me at the moment would be really difficult as I have no concentration or any energy. I am still very much 'in the middle' of this illness. I am just really worried about what work will say now that this is the second episode of me being ill. Although I have technically been ill all along, I keep worrying I will be sacked or that HR will get involved and take me down the 'promoting attendance at work' route which is supposed to be horrific, but at the end of the day I am too flaming ill. I also received my blue badge last week as I have problems with walking and am using a stick just now. This will help a lot because I was having to park about 15 mins away from work due to car parks being SO busy and walking/shuffling in was becoming unbearable. I will now be able to park in the disabled bays at the front door! phew.

Socially/recreationally I cannot do much either. My social life for a 26 year old is nil!! I am ultra self conscious about my stick. I can't even go out for a meal because sitting in a wooden chair for more than 10 minutes hurts or I suffer afterwards and feel like my thighs are all bruised. I love crafts and do a lot of knitting and my hands are too sore to knit again. Even typing is difficult for me just now. I just feel I have a plethora of symptoms that are actually becoming unbelievable to some people (although, I know you guys will understand).

Is there anyone else who have had problems with work, and had to take A LOT of time off due to being very symptomatic? what on earth are your coping mechanisms and does anyone think that once my thyroxine kicks in my fibro symptoms may get a bit better? I keep worrying about the future and financially what will happen, because if I keep taking time off work my sick pay will run out and I can't be stuck at mum and dads forever!!! I also really enjoy my job which is quite rare these days, and that makes it hard too because I want to be there but even when I was back for 4 weeks I was barely functioning. I couldn't take anything in at meetings or over the phone. I was writing things down then when reading them back it seemed like latin to me! I have my occupational health appointment this week so hopefully that will help a bit.

Please help me rationalise all of this because my main worry at the moment is work!! and what on earth is going to happen with me! I am never away from GP and I think he is personally sick of me, although he did apologise for not keeping an eye on my thyroid the past few months as obviously it has been failing for quite some time.

HELP ME, HELP ME, HELP ME lol
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Re: Off sick...again! thyroid, puffy face, what do I do?

Postby FluppyPuffy » Mon May 27, 2013 12:59 pm

You'd duplicated your topic, so I've got rid of one to save on the confusion and chaos that comes with the inevitable duplicated replies :facepalm: :facepalm: :facepalm:

Unfortunately a condition like FM, along with some of the associated stuff that tags along with it, tends to make up its own rules as it goes along, which is part of why it is so vague and unpredictable and frustrating :banghead: :banghead: :banghead: :banghead: :banghead: Sadly, the vast majority have found that we have become unreliable when it comes to making arrangements to do things as we have to cancel at the last minute far more times than we manage to get out and do what we had planned :( :( :( :( :( It's another of the delights that we have to deal with :swear1: :swear1: :swear1: :swear1: :swear1:

As for what do you do at the moment, the important thing at the moment is to get yourself as well and settled as you can be. Once you are there and things feel a little calmer, then you can start looking at the other areas and things that you want to do, change etc, and see what could be the best way to approach them.

I've only done a very brief read about the meds used for thyroid problems, but it would seem that it can take a while for their benefits to take effect. Improvements tend to be gradual, and could take 4~6 months for you to feel like you're back to being vaguely huu~mon, as it varies from one individual to another. As to whether this will help with FM symptoms tho, I can't really say as we're all so very different when it comes to these conditions, how we react and respond to meds etc :-? :-? :-? :-? :-? :-?

It takes time to get used to living with FM, and with you being dx'd in February, it means you're still at the beginning of your journey towards accepting it and learning to live with it, so times like this are bound to happen as you begin finding what your capabilities and limits will be. During this stage, taking each day, or even part of each day, as it comes can be the best way to approach thngs, then as you learn a little more about how you are, what you can do etc, then you can start to look a little further forward.

I know you're desperate to get a place of your own, and once you have your symptoms under more control, then there's no reason why this shouldn't happen. At the moment tho, it needs to be put quite a bit further down your To Do List, as even thinking about it could add its effects to how you are feeling, which will probably mean it takes you that bit longer to get yourself to that important stage where you are feeling more settled and in control of your problems.

Workwise, all you can really do at the moment is keep them up~to~date on how you are, treatments you are trying etc. And again, only when you reach that more settled and controlled point, should you start considering the idea of going back and what might help you with returning.

I probably sound a bit mumsie again, I seem to be doing rather a lot of that at the moment :oops: :oops: :oops: :oops: :oops: But being a bit further down Fibro Road hopefully means that sharing some of what I have done/not done will make your journey a tad less bumpy and :crazy: :crazy: :crazy: :crazy: :crazy: than it could be :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Off sick...again! thyroid, puffy face, what do I do?

Postby cocobella » Wed May 29, 2013 5:16 pm

Thank you fluppy. :) I would be better just private mailing you all the time as you are the only one who has replied to ALL my posts haha!! Posted twice by mistake, I am not trolling honestly. lol

As you can tell I was really anxious the other day. Since then I have seen occ health and have been reassured I need to stop worrying and that I WILL get better and my job will be waiting for me. Thank the lord!!! In the mean time I have been told to completely rest, which I am a bit allergic to but I will do it. Still not noticed any difference with the thyroxine, don't feel energetic etc. Only thing I have noticed is fast heart rate.

Saw my GP the other day and took along some pages from the nhs choices website about specific symptoms etc and he was VERY dismissive and said a lot of the stuff on there was nonsense. So I said to him ok will I write in the comments section that my GP has that opinion, he said no!! I find all the GP's in this particular practice are VERY closed minded and I know that everything in there is about money.
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Re: Off sick...again! thyroid, puffy face, what do I do?

Postby FluppyPuffy » Wed May 29, 2013 5:39 pm

Glad you've had some decent reassurance from Occy Health about your job :bear-dancing: :bear-dancing: :bear-dancing: Hopefully with this helping a little with the anxiety levels it will also filter down to your pain and symptoms as well :fingerscrossed: :fingerscrossed: :fingerscrossed:

With the types of people a lot of us seemed to be pre~FM, being a bit allergic to complete rest seems to be par for course :facepalm: :facepalm: :facepalm: Even these days I find it difficult to do nothing, and I should know better after 13 years :oops: :oops: :oops: :oops: :oops: OH has even tried :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: it in, but seeing as I've lost at least half of my brain it just goes straight thru and out of the other side :lol: :lol: :lol: :lol: :lol: :lol:

Usually stuff from NHS Choices stops dismissiveness in it's tracks :shock: :shock: :shock: :shock: :shock: Sounds like a new surgery might be needed, are there any others not too far from you that might be worth investigating???
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Re: Off sick...again! thyroid, puffy face, what do I do?

Postby whoami » Wed May 29, 2013 7:01 pm

Cocobella......I thought I had responded before, sorry. No excuse but I have quite often written my post only to forget to submit it, then it is lost.

Anyways, Fluppy is so right, everything the fibro and thyroid is a long journey. Meds do not work quickly and the need to change them often is normal.

I have no thyroid now because of cancer. I take Levothyroxine daily. My levels have been normal at times and I have felt miserable. I also take HRT. Like a birth control med it can throw off my thyroid levels. Give your meds some time to work.

Living with fibro, having a thyroid issue and depression can be a miserable journey, then we have all the other health and life issues to deal with. You can and will live a productive and enjoyable life living with these conditions. It doesn't feel like it now but you will. Work with your Drs have patience and try to find positive things in your life to concentrate on.

I was married 6 months when I got fibro. I actually asked my hubby if he wanted a divorce. It is a long journey, that was 23 years ago. Our lives are not as we planned but we have very happy lives....you will also. X
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