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Hypothyroid and clueless

Posted , 5 users are following.

jobismom
jobismom

Hi Im new here and new to thyroid issues to begin with.  I am in the US and recently switched primary care doc.  The new doc is wonderful both my husband and son see him as well.  He mentions to me "did you past doc ever talk to you about your thyroid?" no never, "in 2099 your thyroid was low but in 2011 it was normal if its ok Id like to get that checked again for you" so of course i agreed.  I get a call 2 days later and the nurse tells me Im hypothyroid and need to go on a low dose of levo 25 mg, tells me you will feel so much better, and I was stunned because to be honest I wasnt feeling unwell, had no real obvious symptoms.  Im not constipated, was sleeping ok not perfect but good, hair is thick, libido is high, periods normal.  One of my few body complaints was sore feet but I think ive found new shoes to help with that.  So as you can see I was quite shocked, I never even wrote down my levels etc. didnt know to really.  I have anxiety and was put on zoloft for years, and took birth control as well.  oh Im 50 years old.  Ive been off both the birth control and the zoloft for over a year.  my periods were regular and fairly normal and I was managing moods well.  I weened off the zoloft for a while before coming off I did 25 mg then 12.5 etc.  My old doctor never re checked my thyroid and just kept me on the zoloft which I see stories here of similar things.  Im so angry about that I cannot even express it.  Anyhow my anxiety has been through the roof over this whole thing, I cry because Im so upset that I need to be on a medicine for the rest of my life when in my eyes I had nothing wrong with me.  Since I started the levo, Im definately not tired during the day, and I wake up like clockwork at 4:30 every darn morning, I used to be able to roll over and go back to sleep if I woke, I seem to sleep ok but asleep by 10the latest lucky to make 9-930.  For the first week my face (cheeks)was flushed beet red and hot hot hot. seems to have calmed a bit but still present.  Today makes 2 weeks on the levo.  I called the doctors office to get my lab numbers and she said my TSH was 4.9 and the range is .4-4.5 so I was definately elevated and definately need the med bla bla bla, so I basically asked to come in so I can talk to the doctor.  So if you've read this far thankyou so much.  My questions to you all is...were any of you diagnosed like me with not really symptomatic or necessarily aware?? and do you think I could have been fluctuating for years seeing how I was under in 09 then normal in 2011? How long until I can be tested again? 

1 like, 15 replies

15 Replies

  • Gillian433545
    Gillian433545 jobismom

    Posted

    4.9 is not high normai is around 5.0 to 5.5 so that could be making you anxious.
    • LAHs
      LAHs jobismom

      Posted

      The range is indeed 0.4 to 4.5 mlU/L. Sometimes it is shifted slightly to 0.5 to 5.0 mlU/L (not a great deal of difference). In the UK they say 0.2 to 4.0, again not a great difference.

      Jobismom, Gillian was pointing out the range which is called high, not the overall range of TSH. And I agree with Gillian, I wouldn't worry about 4.9.

    • jobismom
      jobismom LAHs

      Posted

      so like I asked do some people fluctuate?? why would the doc definatively say you are hypo and have to go on meds for it. can your numbers run borderline and you not need meds??  I specifically asked the nurse just today, "if Im borderline I dont understand the meds" she was perturbed with me and said "there is no borderline with your thyroid, this isnt like being borderline enemic, this is your thyroid" so I stated "again Im very confused as I was not symptomatic, so she said "do you want to make an appointment with the doctore" I said "yes please" 
    • LAHs
      LAHs jobismom

      Posted

      You are running into the reason why there are blogs like this one. The rudeness of the medical profession is based upon thier ignorance. There is a lot of ignorance around the subject of hypo/hyper thyroidism because there are so many variables to get into balance. The doc has to give the impression that s/he knows what s/he is talking about and should never show uncertainty - they have classes on that.

      But anyway, you can be borderline hypo. Just keep a careful watch on it until you start to get readings which are well and truly in the hypo range (or hyper). 25mg is a very small dose and shouldn't cause much of a problem, the fact that you are wide awake very early in the morning is pointing towards hyper i.e. maybe even 25mcg is too high a dose for your TSH.

    • jobismom
      jobismom LAHs

      Posted

      I will be requesting blood work at the 8-12 week mark.  Im just not coomfortable going 12 mos its unacceptable, I talked to a friend yesterday whose co worker has thyroid problems and her own husband has as well and she was shocked he threw me on the med without sending me to an endo.  I live in an area with great doctors and hospitals so its not like id have to travel.  We own our own business and pay a fortune for top medical insurance so I will be requesting whatever is needed.   My husband is going in with me so that way Ill have a backup.  The doctor is great dont get me wrong but he is not an Endo and may not have enough experience in it.
  • shellyC19
    shellyC19 jobismom

    Posted

    Hello Jobismom:

    My name is Shelly and I am a nurse in the USA and I have Hashimoto's Thyroid disease since age 27.

    Thyroid diease hits in the prime of life between 20 to 45 years old.  It can act like the flu symptoms and you can have tiredness and muscle aches.  Normal TSH is 0.45 to 4.50 in that range.

    I was in Nursing school in college when a professor who was teaching us noticed an enlarged thyroid. I was around 20, and I was okay I thought and no doctor  then said I had thyroid disease.  At 27 I saw a new Primary doc who immediately said you have a Goiter and I need blood now.  When he called me and I learned my TSH was bad I was shocked also.  I had weird symptoms like constiaption at age 12 or so and I was not heavy.  I was having some other symptoms of irregular periods but the OBGYN never said anything.

    Yes, to answer your question, the body tries to compensate for the low thyroid and  some unaware doc's tend to pass some symptoms off as stress, or working too much, or even depression.  It can happen that the thyroid declines just a little bit at times and at other times it can appear normal.  My type of thyroid disease is autoimmune and my thyroid was under attack of certain protein antibodies and it can take years to see the damage done.

    It is good you are now diagnosed and take your Levothyroxine on an empty stomach.  Food blocks the medication.

    Blood work is usually done at 2 or 3 months out after being on it.  It takes 6 to 8 weeks to build a level. I am tested every 4 months.  I am stable now and only on T3 Cytomel as I do not convert T4 into T3. That is another story! 

    Many bad symptoms should fade away.  Ask your doctor to check your Vit D level as it tends to be low in Hypothyroid patients.  Also do a mineral panel to include: Potassium, magnesium, sodium, calcium, ferritin, iron, selenium, zinc, as we need our minerals to be in good shape.  you may want to also ask to check your B-12 level.

    Keep us informed on how you do,

    Shelly

    • jobismom
      jobismom shellyC19

      Posted

      Thank you for sharing, about a year ago I actually had my calcium and vit d checked I had unexplained leg pain deep inside and was checked for DVT because of a family history of clots. I was fine on everything so the doc gave me naproxen i took it for a bit but the issue basically just went away on its on, i always thought it was a pulled muscle deep inside.  I am heading back to the doctor thursday and Im asking for new blood to be done at 2-3 months, Im not comfortable waiting 12 months!! I dont mean to sound rude on here but this really did take me by surprise, In hindsight I quite possibly have had many symptoms over the years but Ive never been unwell so to speak, if that makes sense.  thanks for listening and explaining
    • shellyC19
      shellyC19 jobismom

      Posted

      Hello Jobismom:

      Yes, ask for new blood work on Vit D and calcium level.  We (us patients) have to push at times for certain things to be tested.

      I know some medical people ,(even an Endocrinologist who did not believe in any other med but Levo.),  can be clueless and I have experienced it myself even though I am a nurse.  I am 54 now and have had this problem since I was 27.  This forum is a blessing, as when I was diagnosed back in the 80's, I was handed an 8 X11 piece of xeroxed paper and no support club. 

      If you think about your symptoms as I many years later did, I'll bet you had some a while back.

      Please keep us posted on how you do, it helps to know we can make a difference and help people.

      Regards,

      Shelly

       

  • barbara79007
    barbara79007 jobismom

    Posted

    I'm older than you and about 2 years ago my doc said it is about time to start treating your hypothyroidism. She said I would start feeling so much better etc. but I was feeling great...no idea I had a problem. Never have had weight prob to great degree and esp no weight around stomach. Now I've been taking Letho... And have gained 20 pounds, most around stomach. That is the only depression I've had. Also my tongue has swollen so that I have bite marks around edges of tongue which disturbs me. When I showed   

    my new doc that, he said don't worry about it and increased meds to 50mg.

    I asked to get off Letho and he said No. I'm considering taking myself off it. Just hearing docs saying it is dangerous getting off it when my body needs it is scary. All I know is I was feeling great before getting on the meds.

    so our situations are similar and I need input from others as well.

    • LAHs
      LAHs barbara79007

      Posted

      Barbara, get your blood tested for T4, T3, reverse T3,TSH just to see the extent of you hypothyroidism - if at all. Post them here so that we can give our opinions. If you absolutely need medication forget Levo and get onto an NDT (e.g. Armour). If you have trouble getting your doctor to cooperate, change doctors and change again if the next one doesn't cooperate. You may have to drive a long way to find a doc, but don't forget it will ultimately only be once a year because you can fill your prescriptions locally.

      Anyway, get your blood tests and let's all have a look.

    • barbara79007
      barbara79007 LAHs

      Posted

      Thanks. I will do that. I don't understand the tests. Two months ago doc said my tests showed normal - but I had to keep taking meds. I asked for appt w Endocrinologist, but he said tests show I am back to normal. I just need to get rid of weight and cannot seem to do that even thought diet has not changed. P.S. I am 78!😳
    • LAHs
      LAHs barbara79007

      Posted

      Hi Barbara, do read up as much as you can on this topic. Start here then Google anything you do not understand. Keep studying because this is a complex system, it took me 6 months of dedicated studying to get into a situation where I knew what medication to ask for. I  had to do a few thyroid panel tests at my own expense but it was worth it once I realised the lack of interest/knowledge that endocrinologists have for their own subject.

      Read, read, read Barbara and Google any term that you do not understand. It will feel overwhelming at first but don't give up, you must stay in control of your own condition.

  • jobismom
    jobismom

    Posted

    OK so doctors appointment went well.  He is very knowledgeable he took the time to explain everything to me.  he was shocked when I asked this tho "well can I have blood work done after 3 months and not 12" he looked at me funny and said "I always do bloodwork at 6-8 weeks, oh my wait were you told 12 months, Im so very sorry that was miscommunicated to you" so I told him what the original nurse said and what the one the other day said, he was disappointed and aplogized profusely!!!! All that stress for me was for nothing.  His long time assistant has recently left due to a move to another state because of her husbands job, my husband knew her well, she was so good at it she knew who was who, whether she kept notes or what but the doctor is literally lost without her.  when we got in the car I looked at my husband and said "someones head is gonna roll" and he said "oh yes it is" and I said "I guess she really did run that place, thats too bad" I get it that its hard to train new people etc. but this is peoples lives here, their medical stuff.  So I said "I would prefer when my bloodwork is done to speak and hear from you then not one of the girls back there"  So the least I can do is calm down, and let the  meds level off, hopefully the 25mcg will bring me back into range for now.  He thinks I will notice some improvements, says things I may not have even noticed before like Shelly said.  
    • shellyC19
      shellyC19 jobismom

      Posted

      Hello Jobismom:

      We have to be our own advocate and push for things when needed. Before 1980, they hardly tested women and now they are testing teenagers.  I can remember having constiaption at 12 and problems with my periods, and no doctor back in the 1970's even thought to test me.

      So you have a good doctor there and keep us posted on how your blood work comes  out in a few months. Any questions, just ask.

      You should see improvements in a 6 to 8 week time period and if needed they can adjust the dose.

      Stay well,

      Shelly

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