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Newly diagnosed and needing some advice....

Posted , 7 users are following.

iona010105
iona010105

Hi,i have just been told by my dr that i have an under active thyroid.I am a 47 yr old very active mum of 10 yr old girl.I dont know anyone that has this so i am trying to find out as much as possible.

My main question is after feeling so unwell for months will my tablets levothyroxine 100mg take a while to work and will i ever feel the same as i did...??Any advice would be much appreciated.....

3 likes, 20 replies

20 Replies

  • Lottie1188
    Lottie1188 iona010105

    Posted

    Poor you - it is daunting when you're first diagnosed, especially as the condition tends to make you feel very down too. You could try the British Thyroid Foundation website - www.btf-thyroid.org. They were very helpful when I was diagnosed - I'm in the UK and they sent me lots of leaflets. I have been on Thyroxine for 15 years I'm fine! You hear lots of stories of people who struggle, and they have a rotten time, but our condition is pretty common and the vast majority of us live a perfectly normal life. It will take a little while to feel better - I think I began to notice an improvement in about a week or 10 days, but to be back to normal takes longer and you may have to adjust your dose several times before you find the best for you. Good luck!
    • jean34329
      jean34329 Lottie1188

      Posted

      Sorry to hear this. I can empathise as I am in the same boat. I have Long QT syndrome and am worried about the limitations on meds that can treat hypothyroidism.

      I would be grateful for any advice or info.

  • Gizmo1963
    Gizmo1963 iona010105

    Posted

    Hi Iona, I was diagnosed as hypo very recently too and started taking Levothyroxine six weeks ago. I was told it usually takes around this length of time to notice a difference but as I had very severe symptoms, I actually began to feel better after just 10 days. I was so relieved as the fatigue started to ease off and I didn't feel so low and depressed. I have now begun to have a few down days but until they get your thyroxine meds to the righ level, I'm told you can go backwards a little. Hopefully you will start to feel better soon and have your energy back so you can enjoy raising your daughter. Only thing to remember is you are also heading for your menopause so hormones do start playing up. Feel better soon biggrin
    • iona010105
      iona010105 Gizmo1963

      Posted

      Hi Gizmo,thanks so much for reply.Its just a little scary as i dont know anyone with this condition.Its the fatique thats killing me but i have learnt a lot since joining this group.
  • shellyC19
    shellyC19 iona010105

    Posted

    Hi iona,  You can live a normal life having hypothyroid  problems. Since you have just started it takes the medicine (levo), a bit of time to adjust in you. Some people can take 6-8 months and some feel much better in less time. The body needs time to adjust and build a proper level. You will need blood level draws as time moves on, and if it is low the medicine may need to be adjusted to produce a good balance in you.  Hang in there and give it some time. Notify your doctor if no improvement in 6 months.  I hope this helps, I am an RN.
    • iona010105
      iona010105 shellyC19

      Posted

      Hi Shelly,thanks so much for reply and advice much appreciate.
    • Gizmo1963
      Gizmo1963 iona010105

      Posted

      Hi Iona, I guess we all differ until we get full benefit from our treatment but I found the following info for you which seems to fit in with when I started to notice a difference:

      You will need to be patient as it can take a long time to improve. It takes about 7-10 days for the levothyroxine to enter the body’s cells properly so don’t expect any improvement before then. Some people do see improvement in two weeks but for many it can take several weeks and even then, only some of the symptoms will improve in the beginning. If you have been ill for a very long time, it can take many months before you are back to normal.

      You may find that you have some good days and then some bad days again. You need to be careful not to overdo it until you have found the right level for you (your set point).

    • iona010105
      iona010105 Gizmo1963

      Posted

      Hi Gizmo,not over doing it is probably the hardest thing for me but i am only a week in on tablets so i will take it slowley....Thank you.
    • jean34329
      jean34329 shellyC19

      Posted

      Hi Shelley

      I have just been told that a CTPA scan shows an incidental finding of multinodular thyroid.

      I have not had any blood tests done yet and need a scan.

      Please can you tell me what tests should be done.

      I have the signs and symptoms of hypothyroidism.]

    • shellyC19
      shellyC19 jean34329

      Posted

      Hi Jean,  With thyroid nodules, you should have an ultrasound of the thyroid gland, also a biopsy is also recommend. Nodules are normally benign, but in some people they can be cancerous.  Blood tests should be TSH level, T3 & T 4 levels, sedimentation rate test, lets the doctor know if you have cancer or any autoimmune problems, CBC (complete blood count).  I also have nodules and they are benign but it is a wise idea to be checked at least every 2 years or sooner because they can grow and cause you problems with swallowing or with your trachea, (windpipe).   Certain signs of hypothyroidism are, feeling cold, weight gain, mental fog/confusion. sleepy, low energy, muscle aches, low pulse and goiter. Now there are many meds available and most people can take them and live better.  My sister has thyroid nodules, and it can run in families, so ask your family members if they have it.  I hope this helps.

       

  • judy1959
    judy1959 iona010105

    Posted

    You should start to feel adifference around 2 weeks with steady improvement. At six weeks you Dr. Should check the TSH levels agin to see how they are. 
    • iona010105
      iona010105 judy1959

      Posted

      Hi Judy,thanks,yeh due back to dr in 6 weeks so fingers crossed.
  • helsbells15
    helsbells15 iona010105

    Posted

    Hi Iona,

    Welcome to the club,  firstly I believe the faster you are diagnosed the quicker you start to recover.  If you have been ill for some time or have had symptoms for a long while then it may be useful to check out your ferrtin / folate / vit D and Vit B levels for some people these get depleated when they go undiagnosed for a long period of time.

    It did take me a while to get these checked 18 months as my doctor did not see the relevance, however i was severely depleated in vit d and low in vit b although I think I had hypo symptoms for a least 12 years and did not get a diagnosis because i did not know anything about hypothyrodism.  I would say that anyone who has been feeling unwell for a long period of time and gets a hypothyroid diagnosis should get these checked at the earliest opportunity.  That is my biggest lesson that I have learned over the past two years.  I wish I had checked them when I was advised to on another site. 

    Have you built up to a 100mcg dose or are you starting on this, some adjustment may be needed if it makes you feel unwell.  I would not hestitate is asking the gp to work out a rising dose if this is the case.   I reacted quite awfully to levo in the beginning probably because my levels not good to start with.

    I hope you are feeling better soon

    My only other recommendation is get a copy of every single blood test result that you have from the start to finish for your own records.  Then you can alway post your results and it is good to see the progression for yourself.

     

    • iona010105
      iona010105 helsbells15

      Posted

      Hi Helsbells,

      Thanks for reply.The Dr has started me on 100mcg so i am now been on them for coming up my third week.I have kept a diary of how i have been feeling and i have had some good days and some bad.I have felt like the old me sometimes as well and have been able to get back to my power walking.The biggest issue apart from the fatique is the brain fog...OMG!! I am dittzy at the best of time !!!..Will this go in time.??

    • jean34329
      jean34329 iona010105

      Posted

      Hi Iona and Shelly

      I am starting a new discussion on.

      1 cough,breathlessness in hypo.

      2.Peripheral neuropathy- which is driving me mad-in hypo.

      3. Perampanel which caused headaches, high temperature, pain in the right lung like pleuritic pain.

      4. Being floxed. Antibiotic toxiciy . 3 yes THREE antibiotics were prescribed for me all at once for an univestigated chest infection. No bloods were taken . Not even a chest x ray. A few days later I woke up with very hheavy and cold legs and backache. Felt I would never be able to move again. I forced myself out of bed and walkked despite the pain and the heaviness of my legs. I also hhad a spasm in my left shoulder blade which kept coming and going.

      I believe that the peramapanel attacked the auto immune system and the antibiotics finished me off if you see what I mean.

      Four weeks later I felt like I was sitting on rocks. Now the feeling has increased to burning sensations down both buttocks, the backs of both thighs, across each knee and down the front backs and sides of eac leg into each foot. I also have the signs and symptomss of plantar faciitis.

      Are these signs and symptoms part of hypo ?hich triggered off these acute signs and symptoms.

    • shellyC19
      shellyC19 jean34329

      Posted

      I also have in addition to Hashimoto's, Diabetes.  I have had neuropathy of the legs.  It feels like pins and needles and hurts 24/7. Some of it can be reversed and I took Gabapentin which worked a bit on it. They have meds for it now. Consult MD for help in getting it diagnosed.  Fibromylagia has a bunch of symptoms. Some are feeling tired, muscle pains, no energy at all, sometimes a low grade temp.  Log down your symptoms and contact doctor for appt.
    • jean34329
      jean34329 shellyC19

      Posted

      thanks Shelly

      Will do.

      I have suspected that I have diabetes as there is a high incidence of this in the family.I am doing my own monitoring as a random blood glucose unless it is very high or low is inadequate monitoring.

      I am stunned by what has happened to me since December 2013. I would advise anybody being commenced on perampanel to think twice.

      I am unable to have any of the usual meds for nerve pain. However glad to hear that Gabapentin is helping you. Have you tried Lyrica at all or amyltriptylline for nerve pain?

      Jean xx

       

    • helsbells15
      helsbells15 iona010105

      Posted

      Hi Iona, not sure I am a naturally ditzy person too, and I have more energy now but unfortuntely I am still a bit ditzy and still manage to say completely the wrong thing which manages to get the whole room in stiches and leaving me wondering what i said that was so funny.... hey how are you feeling it has been a while since I looked at my emails.  Make sure you get the print out of your results from your gp from the first visit and then your next one too.

      make sure you take your pills on an empty stomach will a full glass of water no food for an hour after and no vitmains for 4 hours.

      When you go for you 6 week blood test make sure you do not take your pills before you go wait till after.  Also make sure you have a early blood test before 10am if poss.  I always try to get the first one of the day or there abouts.

      Hope you are feeling better

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