Under Active Thyroid, Sjogren's Syndrome, IBS and Memory
Posted , 9 users are following.
Hi
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
0 likes, 13 replies
Kecki
Posted
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 .
Lollii
Posted
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
Lady_Selene Lollii
Posted
sally104
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!
rachael29737 sally104
Posted
rachael29737 sally104
Posted
bazzer52
Posted
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.
g741
Posted
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
Giving_up Lollii
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.
Giving_up Lollii
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sheri1994 Lollii
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g741 Lollii
Posted
it is interesting what she has wrote
Reading your medication is scary ! I know you need it,but it is really
strong
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
ann69548 Lollii
Posted