7 WEEKS IN BED NOW IS THIS CFS?

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Hi really need some advice please.

I was recently diagnosed with Hypothyroidism and have not been able to get on with my life as I have been bed bound 7 weeks now.  I have had 11 different blood tests done and the only one that came back with a problem was the thyroid which apparently is suppose to be at 12 but mine is at 11 ( I don’t know what this is suppose to mean).  Going by the doctor this is not to low but have been put on 50mg of Levothyroxine and vitamins.  I don’t understand why I still feel rotten and cannot even get out of bed most days or it takes all day to get up and I can’t do much anyway.

It was suggested I had a virus at the start hence the reason for feeling so poorly and the doctor had said this had affected my thyroid more.  But I have so many symptoms sweating/cold, nausea, fuzzy head, bad concentration, short term memory problems, lethargic, weak, low mood, headaches, random hair loss, heart palpitations, loss of  balance, aches and pains the list goes on.  I feel so overwhelmed by everyday silly things and cry easily.  My mood is also very low.

I have found this all pretty frightening as its been so ongoing for weeks now and the doctors have told me I have to wait a couple of more weeks until Levothyroxine 50mg kicks in, as I have only been on it 3 weeks.

I ended up in A&E the other night because when I stand for any length of time my heart races I break out in a sweat and get really breathless.  The consultant thinks it possible ME/CFS.

I took depression last year and have had health problems all year round. From a degenerative disc in my neck and burning sensation in my shoulders.   Every couple of weeks the nausea I suffer all year round gets worse and I end up in bed sweating and tired for a couple of days.  At times I feel like my brain is soo foggy I have been drugged.

Does this sound like ME/CFS or Thyroid problems to anyone??

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12 Replies

  • Posted

    Sorry to keep putting my two pence worth in but I feel I should just in case it helps others. I was misdiagnosed for years because I thought I had been given every test for my symptom but as I found out just last week I had not!!!!! I was told I had CFS just live with it , so I did years of struggling . Now I have been told I definitely have not had or got CFS !!! I have hashimoto s diseas
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  • Posted

    Thanks for your reply Sylvia I bascially was told low thyroid over the phone and no explanation of what that was until i asked and was to ill to understand. I was put on meds with no info of what they did or how they should be taken. Told to come back in 6 weeks for blood test.  Never been so ill for so long and I had to ring my doctors every week to speak to a totally different doctor giving me different meds and advice..

    Sorry for the moan but its been quite stressful

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  • Posted

    I too am having a bad time at the moment so short reply.  If you are up to it check out TPAUK  (THYROID PATIENT ADVOCACY UK) where you can find out all about hypothyroidism and the failure in the UK  treat it properly.  Also there is information on what you can do to help yourself and explains a lot about how you are feeling.  You may have both CFS and HypoT.  
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  • Posted

    Hmm Laura your story is similar to mine most of your symptoms and More plus this all started for me, with a fluey type virus .my life was , well, a nightmare!!!!!  I was messed about by doctors , shouted at called stupid told , it's all in my head , just depressed nothing wrong with my thyroid and sent home with a flea in my ear ! All my tsh results came back normal so it was just dismissed .i eventually found a doctor who agreed I needed a specialist to look at my thyroid , had an ultrasound result auto immune disease hashimoto , he was shocked after looking up my records that I had never. Had tests for it in 19 years !!!!!!i had been told I had CFS when in fact I had not ! So I am saying to you don't just accept this " diagnosis" GP s and doctors seem to go only by. Tests for under active or over active thyroid and don't see the bigger picture . You are worth more than just an existence . I could be totally wrong in your case but go to.   "I AM HASHIMOTO s A LETTER".  Is this you ???? All the  best 
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  • Posted

    Once your throid meds kick in you may have a better idea if this is a throid problem alone or a thyroid problem resulting from ME/CFS. If other diagnoses are excluded through bloodwork, your symptoms sound very much like ME/CFS. When you describe your heart racing when you stand up for any length of time--that's classic POTS (postural orthostatic tachycardia syndrome). It's a big symptom of ME/CFS. You can Google POTS and see the results. There are some non-drug steps you can take for this.
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  • Posted

    Hi. The GP goes by two levels. The TSH which for under active thyroid will be high

     And your other one T4 which was 11 is not very low but they look at the two levels together

    My TSH was normal. My T4 was 9. So I am not on tablets for it.

    Please google to check this

     I hope I have remembered it correctly so you need to ask what your TSH level was.

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  • Posted

    Getting thyroid supported is a BIG missing piece of the puzzle of CFS and FM.....many docs do not "get it" right with the thyroid...I went 10 longs with an MD before I finally asked my osteopath about the thyroid and he called in a script for Armour (I'm in the US) and in 4 days I was feeling much better.  10 long years on anti depressant damaging drugs.....it was thyroid and I knew it.  

    Do get involved with a thyroid support group as I've been with a couple over the years, learned so much.

    Now, I do know that some with both these syndromes have been bed bound,  I never have with the FM but take mega supplements and thyroid support and truthfully Levo is not good in my body.      I'm in the US and see only integrative MD's...as the conventional folks, they are out of lunch on so much...My opinion and I stand with it.    Hope you can get some help.....I have a good friend who deals with CFS/ME and she and I support the supplement companies.....we are always trying something for help.    Joy 76 US

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  • Posted

    It looks like your labs in the UK are different than the US....I think.   My current TSH is very very low under 1 and T4 and T3 at the higher end of the range.  I'm currently taking 120mg Armour which is a desiccated support...from the pig gland.   Armour has been around for like 100 yrs and I believe in Canada the mutual one is Efra or Erfa something like that.   In the UK, I don't know....  

    stop the thyroid madness is a great book.    

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  • Posted

    Hi Laura, Thyroid issues on average are mis-diagnosed for YEARS before properly being unerstood/dealt with. GO TO A SPECIALIST, one who checks both T4 and T3 and really knows how to read the often misunderstood numbers. My current doc says that for most her hypothyroid patients, she has to give them enough of a dosage of medicine to get them into the very top of the "normal" range or just over into the "high" range before they feel ok; it is not enough to get you just into the "normal" range - go to the top of it, at least. I would urge you to look into that. (And, look into Hashimotos and Addisons. Hormones should be checked through a SALIVA test, not a blood test!) The thing is, Laura, these types of issues we are talking about here, are challenging to pinpoint and really take specialists... very, very, good ones. I would seek out doctors who treat with a combination of meds and natural methods, I would seek out doctors who are absolute specialists for CFS/ME and thyroid... and this doesn't mean that you go to some endocrinologist, go to real specialists. In my experience if I could give you only one piece of advise, skip years of spinning your wheels and get to the best doc you can find who deals with this kind of stuff, specifically. You cannot imagine how many of us have been told: it's in your head, there's nothing wrong with you, your blood work is fine so you must be, you have low iron, you have a low thyroid, et al. Get literate, read all you can. Dr. Titelbaum's latest on CRF is excellent. While you're doing all this, since you live in England (I live in Germany), I'd bet you the farm that your Vitamin D is low, low, low. Have it checked, but in the meantime, start taking Vit D in DROP form. And, all of us (according to Dr. Titelbaum who once had CRF and has been a CRF doc for 30 years) should be taking high quality D-Ribose in powder form at least 2 X daily. I do. It's really helpful. Good luck!
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  • Posted

    Thank you so much to everyone who has replied and given me some good advice.. I am finding it hard to concentrate at the minute so not able to reply in length. 

    But will look into what has been posted..

     

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