Under Active Thyroid, Sjogren's Syndrome, IBS and Memory

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Please can you help

I was diagnosed with under active Thyroid 18 months ago by a doctor who was just standing in for my regular doctor, I had been going to the doctors for 2 years with little complaints but nothing was done as I had been on anti depressants. Since starting the Thyroxine 100mg daily I don't feel any better. My doctor even told me depression can do things to the body like the symptoms I am having.

10 months ago I started a new job 3 months into the job my hands began to swell and I have pains in my fingers the doctors took a blood test but said there was nothing wrong however I saw another doctor at my surgery and she referred me to the hospital rheumatology . The specialist took another blood test as the one my doctor took showed an abnormality, she also sent me for several other tests. Once all the tests where back the specialist diagnosed Sjogren's Syndrome and mild rheumatoid Arthritis in two fingers that don't hurt as much as the others! I have been on Naproxen & Plaquenil for 2 months and due to go back to the specialist in September.

But I still don't feel any better!! and my IBS has become worse. I have changed my doctors practice as I have lost confidence in my previous doctors however I am not sure this new practice will be much better!

I had my first appointment with the doctor I told her my symptoms and for the past 3 weeks I have been in pain with IBS, she concentrated on this problem and stated that I should come back again as "10min appointments were not long enough to go through all the issues I have." Told me to book for another blood test which will be next week.

Long and Short- does anyone else relate or recognise these symptoms?

1. For the past few years I have been having problems with my memory. I forget what people have said to me, forget to lock the door, where I have put things what I was going to do next. I have always been a little scatty but it seems to be getting worse and many times it is only other people reminding me that I realise that I have forgotten or not done something.

2. Lethargy, weary even after just waking up but gets worse around lunch time and by tea time I feel like I should be in bed. I have always slept aprox 7-8 hours but I don't feel refreshed after sleep.

3. Painful cramps, wind, constipation I will only go to the toilet if I have Movecol or a few halves of Guinness. My urine is dark and sometimes cloudy

4. Dry Skin and itchy spells where I could scratch the skin off, Dry eyes and mouth

5. Aches and stiffness all over and clicking wrists, elbows,shoulders and knees

Can anyone help

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13 Replies

  • Posted

    Hi - sorry to hear what you are going through. I was diagnosed with underactive thryroid after 5 years of various problems - dry skin, lethargy, sleeping all the time, not feeling refreshed and so on. Did you get referred to a specialist? It may be that you need a higher dose of thryoxine.

    My IBS got very bad the first 2 years I was taking thyroxine. I kept a food diary, which was really useful, and try looking at the gut health website (google it for the full address). It's now sort of under control, I eat a live natural yogurt every day and take peppermint oil tablets which seem to help with the cramps etc.

    The aches and stiffness and clicking of joints sound like tendonitis - this can be part of the underactive thryoid but is little known as a symptom. My GP told me that it's also an indication of osteoarthritis which I already have in my knees and ankles.

    Also, sorry to tell you this but the thyroxine itself can also cause sleep disruption - I only found this out last month! I would suggest that you go back to the GP but write a list of the symptoms and see if you can book a longer appointment. If you haven't been referred to a specialist for the underactive thryroid ask to be referred and be firm, some GPs are reluctant to refer patients.

    For the dry skin, in the short term, if you can get to a Lush shop, ask for a sample of the Dream Cream, this is a very natural hand and body cream that is amazing for dry skin , they also have a Dream Wash shower gel too.

    I hope you're feeling better soon .

  • Posted

    Hi Kecki

    Thank you so much for your reply, I feel like I'm not as mad as the doctors are making me feel.

    I have just been for blood tests today as my doctor told me that I should be having regular tests as I've also started on hydroxychloroquine Sulphate. i am going back to see the doc next week and will ask to be referred to a specialist for Thyroid and a Dietitian. I have started keeping a diary of food etc, the Doc recommended I try a Gluten free diet but I would like this confirmed by a dietitian as it is blooming expensive to change to this a specialised diet. I was also told to have Movecol everyday but it has not helped this past week and if I can I would like to sort it out with my diet rather than medical intervention.

    I will keep an eye out for a Lush Shop as I never get to use nice smellies.

    Please keep in touch with any other advice

    • Posted

      What about trying a combined therapy of T4 and T3? There was a Danish study that says that T3 helps with weight loss and low energy. :-)
  • Posted


    I seem to be a bit complex too. I have very mild Ehlers Danlos, which affects my soft tissues and joints, and IBS which until recently caused explosive and very frequent morning movements (sorry that's the best way I can explain it). I had been suffering from Depression, and was taking anti-depressants.

    Last autumn I began to feel very tired, started gaining weight, was struggling with memory and speech, hair was becoming limp, all aches and pains, and suddenly I found I was only opening my bowels every couple of days and when I did I delivered bullets!

    I went to GP, and actually asked if it was possible that my thyroid was underactive. This was pooh poohed and they basically just increased my anti depressants.

    I went back after a few weeks as I felt no better, anti depressants increased again and this time I was sent ffor a blood test. I received my test stating 'your test has not identified and abnormalities, so I had to accept the reality that my depression was increasing. I became so ill at this stage that I was feeling suicidal, was no longer able to stay awake, and lost all interest in life. My GP experienced my memory and speech problems, so actually referred me for an Alzheimers assessment, they immediately sent me off for an MRI which uncovered evidence that I have had a number of mini strokes.

    By this time I was no longer able to function, I felt totally unable to think of any future, was unable to work, all the previous symptoms had increased and I had reached the point where I was suicidal 100% day, every day, and had swung from sleeping all the time to being unable to sleep at all.

    To cut a long story short, I have been to hell and back which has included threats of sectioning, I am now taking serious phsychiatric medication (max dose Venlafaxine, over max dose Carbomazapine, and low dose Quetiapine). My bowels until last week have basically stopped despite taking mega doses of Lactulose and andthe dreaded prunes. To recap, i have the following symptoms:

    1. Severe depression which isn't fully responding to drugs

    2. Anxiety (now housebound)

    3. Breathlessness

    4. Constipation ( though I have found that caffeine works well)

    5. Weight gain (2 stone at least)

    6. Memory loss

    7. Speech loss

    8. Dry skin and teenage spots

    9. Over sleeping

    10. Lack of motivation

    11. Libido has died

    12. Black eyes

    13. High BP

    AND at my latest thyroid functioning test, my result showed a very low level, so much so that I received a letter from the duty doctor saying please make an urgent appointment to discuss a need to increase your Thyroxine medication (I am not on Thyroxine.

    I duly made an appointment, GP immediately said, how much Thyroxine are you taking, when I told him I wasn't on it, he showed my level on a graph, there was a cliff face drop which was very significant.

    He then went on to say that we would review in 3 months!

    My psychiatrist and I both think I should be on Thyroxine now as I am symptomatic, and have been for some time! I am beginning to feel very let down by GP service . In the past, they kept saying that my daughters problems were 'emotional' and related to 'Puberty'; she is terminally ill......

    Now have to fight to get another GP appointment and try ro express my concerns (nowadays I sit there giggling, and avoiding eye contact! Communication is an issue now......sooooo fed up with it all!

  • Posted

    Hi u2,

    I started with Underactive Thyroid early last year, and i've been taking Carbimazole since then,

    I've just seen a Specialist in this Field and has said that I need to have the Radioactive Drink with will kill of the workings of the Thyroid, and then I will be on either 1 or 2 tabs a day for the rest of my life,

    at least it will be sorted out one way or another,so I think you need to see a specialist in this Field or some other,

    if I am wrong I apologize.

  • Posted

    Hi my thyroid tests often come back border line

    I came on this site to find out a different test level " there is more than one"I used to have my blood tests

    done through my consultant and when they came back normal and I still felt ill

    he would test them differently (I think with an added number) and my GP would also test it this way

    But I can't remember what! And am due for a test tomorrow

    I was under the hospital as I had a huge goitre ,thankfully I did not have to have an op

    My medication was adjusted to how I felt and results of blood tests. The goitre went and

    Gradually I was taken off my medication

    I have been off this for about 10 years,

    people doubt that I ever had thyroid ,as friends are on

    Tablets for life

    I have had under active and over active thyroid been a size 10 and size16

    And all the added things which come with this illness

    I am lucky to have good G Ps who I can just phone for a blood test to be done

    When i think it's returning

    Like now, I recently had a hysterectomy and I don't know if it is recovering from this

    Or if its my hormones mimicking the return of thyroid

    But at least I will know in a weak. Unless it comes back border line aargh

    Persevere all of you with your meds I am sure your doctors will get your levels right

  • Posted


    Hope your still viewing, I have just registered.  I am 70 and I have just been told  probly I have basically had Sjogrens Syndrome most of my life!  10yrs old I had kidney illness which put me off school for 6 wks, and again 6mths later. Since regularly had Cystitis.  15yrs old treated for ?? Put on pheneabarbitone, Valium and the like.  By 19yrs old I was near suiciidal, if I went in a car or phone box it would steam up , very embarrassing!  Being desperate went to Drs a different night saw an older one, he looked at me, felt my pulse (which was racing!) Inside of 6 wks I was in hospital for thyroidectomy. Because my pulse was so high I was not allowed out of bed or visitors! Weeks later they decided to go ahead and do the op.  

    I carried on to 35yrs having abit of this and that,  mostly spinal spasums, when I started arthritis, and rhuamatics. Mid 40's the joints started getting worse, went through a variety of NSAIDs mid 50's started reading more about Lupus etc and having positive ANA test and Dr. Saying It would mimic like Rhumatiod Arthritis etc. (which it has done) Seeing a consultant in my late 50's I was told No hadn't Lupus.

    this devastated me!  Any I had a knee washout. Last year had new knee, and still waiting for other one, and hip.  4years ago referred back to specialist with positive Rhuamatoid Arthritis. First put on Hydroxychloroquine, then methotrexate up to 23? Which didn't seem to improve things, but then the blood tests started playing up, so came of that, had a couple of other drugs but soon came off them. Then it was Lupus, and now Sjogrens .  My view is now treat the symptoms of the day, along with tramadol, co-codamal, BP tablets, ibuprofen, gastro-resistant capsules (for ulcers etc.) and thyroxin (if I feel more fatigued than usual, I take an extra thyroxin!) I have eye drops when needed, and steroid cream for rashes when needed. I don't go out in the sun, and have avoided it for 30 odd years. Hope this is of help, I am still trying to find an answer.

  • Posted

    Oh! I forgot about memory etc.  This has come over the last 20yrs. I first heard of it as the Thyroid blip!  But now brain fog, and others. This drives my family mad!, they can not get their head round it! Most of the time it goes over my head, like yesterday it got to me, hence my looking on this sight. Fist time I've written anything!!
  • Posted

    Are you still out there? I have every single symptom, and few more. Same deal with doctors. I moved from Illinois to South Carolina where doctors here are horrible. I really want to talk to you. Please let me know. I also have severe bloating which started when doctor told me I was hypothyroid but 2 others have told me I'm nnot. Now I going in Tuesday September 2nd 2014 for a partial hysterectomy. Which if they find anything bad will be a full hysterectomy. Something is very wrong with us but none of these Doctors seem to want to try or do anything out of ordinary to find out. Please message me if your still out there.
  • Posted

    Hi I have just been reading Victorias 122 forum in 2nd hypothyroidism 

    it is interesting what she has wrote   

    Reading your medication is scary  ! I know you need it,but  it is  really 


    I also have been suffering with I B S and like Kecki have found the peppermint oil

    is best 

    i had to look up Sjogrens Syndrome and alarm bells rang with me, with 

    the symptoms .

    I too suffer with aches and pain .i stopped taking the anti inflammatory 

    drugs because of side affects (stomach) and only take parecetomal 

    for my arthritis 

    I am more fortunate than you ,in that my tiredness fatique  only comes in 

    short doses and I can keep active  which helps a lot with my sciatica 

    I hope you feel a lot better soon 


  • Posted

    Hi Lollii,sorry to hear your not feeling so good,the symptoms you state are not unusual they are probably related to the under active thyroid,I have memory loss from time to time,feel very tired most of the time,aching joints,the sjorgens can also present with those symptoms,there are good and bad days,so you are not alone in feeling this way.

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