Confused.. labs say one thing but symptons say another.

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 About a month and a half ago my TSH was was still high at 6.7 (range 0.27 -4.2)  FT4 at 1.36 (range 0.9 -1.7).  So the doctor raised my levo from 50 to 75 mcg.  Two weeks ago I had my levels checked again.  They came back  TSH 2.00 and FT4 1.7( same range as above ).  I went back to see my endo this morning and said that I am still hypo because of my fatiuge, hair loss, muscle sorness, NO achilles reflexes, cold hands and feet, just feeling of unwellness and he said he would like my TSH lower still.   But... for 3 hours after I take my does, I feel speedy, shakey and cannot even tolerate coffee anymore.  I feel I am hyper in the morning and hypo in the evening.  I have a constant low grade fever and enlarged anterior lymph nodes left side of neck and one at the base of my skull which have been going on for 9 months now straight.  Anyway..  my doctor again raised my does to 88mcg.   He will not check my FT3.  He said it was not important even though I know it is.  Does the dose raise sound right even though my FT4 is at the highest end of range?   Does it sound like I may have another issue going on besides Hashimoto's?   I'm so tired of feeling sick all the time.  But not sure where to begin to rule out other causes. I have no idea of other illnesses that may be lingering in my body...  I'm beginning to think more than my thyroid is going on.  Especially because my doctor said that low grade fever and swollen lymph nodes are not related to Hashimoto's.  Any suggestions?  Thank you all!

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  • Posted

    Oh.. and when I asked my doctor about my FT4 being so high and raising my dose again, he said that FT4 doesn't matter either and that he only does by TSH.   This does not sound right to me.  Would my FT4 go even higher if I raise my dose?
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  • Posted

    Hello Sweetmelissa:

    My name is  Shelly and  I am a nurse in the USA.  I have Hashimoto's Thyroid disease since 1987.  I am 54.

    If you are in UK it is hard to get the doctor's there to order a T3 test.  They rely on TSH alone (I think it is a cost saving measure), and that can be bad. Some people pay for it privately.

    TSH should be in the range of 0.45 to 4.50 and your  at 6.7 so changing your dose to 88mcg will help since you are still Hypo.  Of course as the new medication dose builds a level these bad symptoms will subside.  It can take about 6 to 8 weeks though to build a new level.

    Hashimoto's is caused by antibodies in the body attacking the thyroid gland and sometimes people can run a low grade temp because the immune system is not calm and it can be part of autoimmune problems.  It is not always a common symptom but it can happen.

    Since you have swollen lymph and a low grade temp, please ask for a blood test for LUPUS another autoimmune condition should be checked.  LUPUS is also autoimmune and can cause a low grade temp, muscle aches, a red butterfly rash on face, fatigue/tired.

    Your FT4 is okay at 1.36 and is under 1.7.  It should not go up too much higher unless you are not converting T4 into T3.  I think you are.  It is common to have medication doses change after blood work.  FT4 does matter as it shows if you are converting it into T3, so maybe you can ask to see another doctor if this doctor is not willing to look at that.

    Doctor's almost always start low and then raise the dose in increments. So this happens and they have to raise it from your prior dose.

    I have had Hashimoto's a very long time and I am only on T3 as I do not convert T4 into T3.  You need a good doctor who understands the thyroid and if you can please get an Endocrinologist there who knows more.  Hashimoto's can swing a bit between Hyper and Hypo at times.

    Please take the med on an empty stomach and 1 hr. before a meal.  Also get some other blood work done if you can.  Sodium, potassium, calcium, magnesium, ferritin, zinc, iron levels, along with Vit D.

    Many of us are low in Vit D and there is linkage to Thyroid problems.  You need your minerlas to be in good shape.  Please take a multivitamin with iron, as it helps the body build the immune system up.  I take a wome's daily one with iron.

    Any questions, just ask.




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    • Posted

      Hi Shelly...  Thank you for the reply.  I'm sorry...  the levels you mention were the ones before the doctor raised my dose.  The new ones are TSH 2.1 (0.27 - 4.4) and my FT4 is 1.7  (0.9 - 1.7 )  That is what I mean by my FT4 seems too high for the doctor to raise my dose again?  It was after this blood work that the doctor raised my levo again.  Sorry for the confusion....  Not sure if the levo will raise the FT4 higher or not? Also...  you may be right about Lupus.  My mom and aunt actually have lupus.  I live in the US and do see an endo, but he is 78 years old and perhaps a little old  Being he will not check things properly, I may have to look for a new doctor.  He won't check my iron, vit D, FT3 or anything else for that matter.  I'm sure he won't test for lupus either.  I'm getting frustrated because I feel like he doesn't understand nor care about how I feel.  I am only 35 and shouldn't be feeling like I do.  Anyway..  sorry for  Thank you so much for helping.  Time for me to look for that new doctor now.  Thanks Shelly!


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    • Posted

      Hello Melissa:

      Please switch Endo's.  I don't mean to be mean but the current doc is a bit ou of date and uninformed enough and  you need a T3 level to help see if you are converting.  Old doctor's are not up on current things and you will suffer!

      Please tell the new Endo about LUPUS in your family as it can be a family trait and if left untreated it may cause damage to your kidneys.

      It is easy ask your GP for a referal or call your insurance plan for an Endo they have on file.  Make an appt.   Just ask nicely for a copy of the records to his receptionst or med. asst.  By law they have to give you your files and go to another doc.  I myself had to do this years ago.

      I know people who have LUPUS and you must be tested for it!  

      As to your FT4, you can stay on the 88mcg and give it a  whirl or you can stay on your prior dose because at 2.1 you are doing okay!  yes, if the T4 is at 1.7 it may go higher on the new dose, and you will have to back it off.

      Let's look at LUPUS, and get the blood work done by a new doctor. I want all tests above and  a Lupus test. 

      Keep me posted I care!


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    • Posted

      You are Amazing!  Thank you so much for taking the time to help and care.  I am so happy I have joined this site.  It is my first and only one and I am so happy I did.  It is so comforting to finally have others who care and understand.  I appreciate your advice very very much.  I WILL follow it to the fullest.  I'm going to call tomorrow.  Thak you again Shelly!
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  • Posted

    Hi Melissa, I would suggest you keep a diary of your symptoms and blood results so you can look back and see improvements and note any down-turns. This will give you 'ammunition' when you see your doctor. Read up as much as you can about your condition. There are some good Facebook pages and Thyroid Uk has lots of useful advice, tips and info. If you can, take someone with you, who can take notes when you go to your doctor. It is easy to miss stuff when you are not well. Keep your pecker up and here's hoping for better health!
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    • Posted

      Thank you for the advice Scazzoh!  I  actually do keep a list of symptoms before I go .. but, when I get to the doctors I usually don't read the whole list off because I'm so scared they are going to think I am a hyprocondric.  Sometimes they make me feel that I am.. although I know it is very real and I think that I may have to feel horrible the rest of my life.  Yes.. that is a great idea to keep track of old symptoms and new ones and so on.  That way I can see where I am improving or getting worse.   Also..  yes, I will look into the pages you recommended.   Thank you Scazzoh!  I guess it's time for me to grow some balls if I ever want to feel normal  Heck, I'd be happy with even close to normal.
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