compensated hypothyroidism - what next?

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Looking for help - i am 46yrs female professional/ been feeling unwell/ fatigue/ headaches/ weight gain -10kg over 10yrs.bmi 30.

on treatment for hbp- 8years/ but been gen somewhat unwell/ low energy since then- but last few months been having fatigue+++sleepiness+++

my auto antibody-ana was positive 8 yrs ago-nfa.

2 months ago,- TSH 4.8, t4- 17- lab report- compensated hypothyroid.

due to the chronic fatigue symptoms- started T4-25mcg, felt slightly better, in 6 weeks repeat tsh was 2.2. but again sysmptoms was persisting so T4 increased to 50mcg.

6 wks after repeat blood test- TSH-1.2. (TPO antibody- 155)

Other test- low vit D, autoantibody positive -anti ro- ? SLE ? SJORGENS.

So, my endo consultant- doesnt think my fatigue is all due to thyroid anymore. and feels there is underlying other autoimmune connective tissue disease causing the symptoms of fatigue. maybe he is right.

but how long one can go on without answer with sev symptoms?

sev fatigue and fuzzy head is driving me mad, now got muscle ache and developed joint pain in shoulder and elbow.

not sure should i continue T4 or maybe reduce the dose from 50 to 25 ?

i cant keep up with my daily routine/ and waiting for rheumatology team appoitment- my life is come to COMPLETE stand still- no one at nhs taking ownership to diagnose..it is really sad. diagnosing lupus condition is not for beginners/ or GP 's . and i need someone to help me now not after my brain cell are packed up.

will appriciate any suggestion from anyone in same situation and any keen professional diagnostician in this forum . Goodluck.

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  • Posted

    HI

    sounds similar to what I have and am going thru.

    No answers just left high and dry.

    UNDERSTAND COMPLTELY WHERE U ARE COMING FROM.

    My ANAS were positive being 1 in 80. The EBV was positive too. On MAY 4 3015 my TSH was 0.16 TPOAs less than 33. Free T4 16.5.

    I have 20m nodules on th thyroid, no biopsy nothng. No treatment.

    What was your ana ressut? Hope u don't mind my asking.

    Take care

    Jean

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    • Posted

      Thanks

      my ana 3.4 (normal is less than 1) anti RO POSITIVE.

      NODULE NEEDS BIOPSY- DONT STOP UNTIL U GET THAT.

      I TAKE IT YOU ARE ON THYROXINE RIGHT?

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  • Posted

    Hello Pooja:

    I am a Nurse and live in the USA.  I have Hashimoto's which is an autimmune.  I also have sjogren's  syndrome.  You have the symptoms of Hypothyroidism.

    Some of them are:  weight gain, fatigue, muscle aches, dry skin, brittle nails, feeling COLD, having mood problems, depressed feelings, brain fog, no periods or very irregular ones. These are most common ones.

    Hashimoto's is autoimmune and TPOA antibodies are present. There is a virus called Epstein-Barr and that can cause Hashi's.  EBV for short.  They should test you for that.

    Diagnosing SLE & Sjogren's is easy as there is a blood test for that. However,  some of us have some symptoms of Sjogren's even though we do not test positive for it.  All of these disease's are part of Rheumatology and Sjogren's is related to Arthritis.  I have severe dry eyes and dry skin but my doctor said I fit some of the symptoms but not all.  So he diagosed me with Sjogren's and in many of us, we cross over into other conditions.  I know people who have several conditions, like chronic fatigue and thyroid issues.

    It is a bit of playing a detective and adding up the weird symptoms that do not match with just thyroid ones. Of course this takes having a good Rheumatologist or even a smart GP to add up all of the symptoms then render an opinion and make sure despite the blood work.  Sjogren's is harder because it can act like Arthritis which I have also.  I am 54.

    It has to be treated from the thyroid  and then on the chronic fatigue or sjogren's. Once the doctor can say the symptoms match then they should be able to help the problem.  I saw a Rhematologist years after my Hashi's, and he did a good eval of my symptoms and went with it.  I went years not knowing, because not all the symptoms come at once, and they can be written off as stress/over doing it etc...

    See the best doctor you can afford.  Log all of your symptoms because for me, it was the severe dry eyes that was telling.  It got so bad my cornea attached to my eye lid and I must use an ointment at night for the rest of my life.

    I hope this helps,  Shelly

     

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    • Posted

      Hi Shelley, I decided recently I too have sjorgren's. (Funny how I always seem to diagnose myself before the doctors). I have dry eyes where my eyelids stick to my eyeball at night and my mouth has no saliva left in it. The breakthrough came a coule of weeks ago when the optician asked the GP to prescribe lacri-lube at night and carmellose eye drops during the day. These are helping a lot. I'm now not waking up at night to put eye drops in. The trick seems to be to use the eye drops regularly to stop damage to the cornea. So, thank you for mentioning this as I didn't realise it was related to arthritis or that it had other symptoms.
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    • Posted

      Barbara

      I would advise seeing an ophthalmologist too. I had concretions from dry eyes plus a red eye. I had to have retinal photography and ultra sound done. I have a posterior vitrous detachment and get floaters. These should never be ignored if you get them.

      This condition needs monitoring. Emergency eye clinics will see people at eye hospitals.

      Also may need to rule out ANTERIOR arteritis.

      Take care

      Jean

      Jean

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    • Posted

      THANKS SHELLY

      very useful post. will keep my outcome posted .

      did u go on immune suppression for sjogrens? how did u cope with fatigue?

      my endo wont increase my t4. and i am waiting to c rheumatlogist. take care.

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    • Posted

      Dear Pooja:

      I was on a medication called Plaquenil  for a short time which is the treatment medicine for Sjogren's.  My fatigue was really bad for years until my doctor figured out I was not converting T4 into T3 and it improved when I started taking Cytomel, (Liothyroonine) which is pure T3. 

      You know, it worked.  I think my thyroid was so damaged from the Hashi's and I just could not make T3.  Before I was on Cytomel, I was sleeping so much and it was awful.  I felt so bad, as I was taking the Levo and getting nowhere.  Blood work was always bad and I would explain I was taking the medicine.  Lucky for me, my doctor got to talking to an Endo who suggested this. It is a night and day difference.  i now know that some people take some Levo and some Cytomel.  I wish it was easier to figure what would work on you or anybody else.

      All I know is keep trying different thyroid meds until one works on you.

      As for Sjogren's I must keep my eyes lined with an ointment made for dry eyes at night.  I also need to keep my mouth wet and I drink a lot of water and use sugarless hard candy at times to keep my mouth saliva up.  I also had to tell my Dentist before any dental work.  Most Dentists know about it.

      Arthritis is still with me and I live with it.  I had my knees worked on to clean them out, but I could use new cartliage.  LOL.  Too bad we don't grow any new ones.  I heard via my Rheumatologist that they are starting to make it in a lab.  Of course it is not ready for patients yet.  I hope that comes out in my lifetime.

      Any more questions, just ask.   Stay well,  Shelly

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    • Posted

      Dear Barbara:

      My Rheumatologist asked about my eyes and when I said yes, he was certain about Sjogren's.  He also asked and it might sound weird, if I was dry in my Vagina.  I just never thought it mattered. It told him a lot and from that he knew!  Yes, Sjogrens is a cousin in the Arthritis family of diseases. 

      Part of the problem is it caused some abrasions before I knew it was a condition and had to have my right eye cornea cleaned off.  It helped, but yes, keeping drops in them in day or the ointment at night works so well.

      It sure is a symptom and symptoms really matter. That is the problem, it is a collection of symptoms.  I am glad you figured out you have it, it is such a weird thing, but it happens.

      I like to tease, I have to go to Japan and Sweeden someday....LOL I have a Japanese thyroid and a swedish disease. 

      XO Shelly

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    • Posted

      Dear Shelley, the bit about dry vagina also applies. I hadn't realised it was connected. Thank you. I'll ask my GP when I see him on 23rd Sep 2015.

      Sorry, I know it ruins the effect to have to explain, but...japan? Sweden?

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    • Posted

      Dear Barbara:

      The disease Hashimoto's was discovered by a Japanese doctor who had the name Hashimoto.  Sjogren's is from a Swedish doctor who discovered it.  So I like to say one day I should visit these places, the "homeland" of my conditions.  LOL. 

      Yes, the Rheumatologist said that just those 2 symptoms meant a lot. I was much younger then about 34 yrs. old  when he asked me that.

      XO, Shelly

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    • Posted

      Hello Lucy:

      Sjogren's is a condition named by a Sweedish doctor.  It is a collection of symptoms and is related to Arthritis like a "cousin."

      The symptoms are: Dry mouth, getting cavities in teeth a lot, low saliva,  very dry eyes, arthritis pains in knees, elbows, other joints. Having a dry vagina, severe dry skin, feeling tired. There are more but these are common ones.

      It can interfere with other conditions and they prescribe Plaquenil for it.  It can be treated but there is no known cure right now.

      Shelly

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    • Posted

      Have had an adverse reaction to eye drops (eyelids red and sore) so had to stop drops and am back to where I started just using hypomellose preservative free eye drops.
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  • Posted

    Hi pooja, when one's thyroid isn't working properly one doesn't absorb vitamins and minerals from food properly so it's worth testing for other deficiencies. Namely Ferritin, vitamin B12, magnesium, potassium, selenium, calcium (Shelley have I missed any?) Any of these can make you really fatigued. Are you being treated for your low vitamin D?
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    • Posted

      Hi Pooja

      Do you mind i.u a day for three months.

      Are you taking Vitamin D2 or Vitamin D3?

      Could you clarify the dose? You write that you are taking 10000 i.u per day for three  months!!!!

      That appears to be rather a large dose!

      Mind my asking you what your vitamin  level is and your parathyoid hormone level as well as your calcium and phophate levels. These are or should be done together . The dr usually orders a bone profile. The calcium level is done as the vit D level affects the level of calcium in our body.

      Are you  having your calcium levels monitored weekly/

      Jean

      Did your dr prescribe it?

      Have you got renal/kidney disease?

      What dose is it , you say it is 10000

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    • Posted

      Hello Barbara & Pooja:

      All of above is correct.  Any vitamin or mineral deficiencies need to be addressed as it helps with the thyroid.

      Shelly

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