Symptoms not going away. Body temp always low. Levothyroxine not right for me?

Posted , 3 users are following.

I've recently been diagnosed with subclinical hypothyroidism based on my TSH being 7.040 (range 0.450-4.500 uIU/mL), while my free T3 and free T4 were in normal ranges.  I was put on 25 mcg of levothyroxine for a few weeks till i saw my endocrinologist.  I was then put on 50 mcg of levothyroxine.  After a month of being on it,  my TSH was around 1.6, and after another month it was around 0.6-0.8 (estimates as I don't have the exact number at the moment, but i remember them being around those values).

It is about 3 months on 50 mcg of levothyroxine.  I still have all my symptoms and i know it can take awhile for them to start going away but i feel like nothing is changing at all.

I recently started tracking my body temperature throughout the day for a few days, as my body is awlays cold and stiff, and my hands and feet always feel ICE cold.   The numbers I've been getting are, 97.4, 97.3, 97.2, 97.4, 97.4, 97.1, 97.0.... etc.

I read that if your body is always under like 98.2 degrees fahrenheit that it's possible your body never is warmed up enough to keep your body limber and ready to be active? (maybe explaining why my body is SO stiff and sore all the time?)

[u]My overall questions/concerns:[/u]

1) Should I just be patient for a few months, waiting for symptoms to hopefully start going away, since my TSH has dropped within normal ranges? I do another blood test in march. 

2) Is it possible levothyroxine is not right for me? Maybe my body doesnt convert T4 to T3 properly and that I need to try alternatives, such as Armour or natural desiccated thyroid? (dont know much about any of them, sorry if I said it wrong) 

3) Is my body temperature thing a true concern, and is this something that should go away with my medication, or should i bring it up with my endocrinologist and/or try a different medication that could resolve this?

4) Any other comments or questions from anyone is greatly welcomed! Thanks!!

[u]My original post is below[/u], before I was diagnosed (to show my symptoms, etc):

"I am 25 years old (male) and I have slowly developed tendinitis and sore, tight muscles all over my body over the last 3 years.  It started with my shoulder and wrist in the gym, but once i got elbow tendinitis, i stopped going.  Slowly I developed all the symptoms on both sides.  

Now like 2 years later, I now have lower back pain, upper back pain, neck pain, thoracic outlet syndrome, carpal tunnel, swelling behind elbows, insanely bad hip pain, sciatica, sore ankles and achilles, sore and unstable knees, and more.  Pretty much everything hurts but the areas i use the most ache more (hands, arm, shoulders, hips, etc).  I have tender spots all over.

It's easy for me to injure myself, as I've pulled my groin like 3 times in the last year, and my hamstring once, doing nothing intense. 

[u]Some other symptoms:[/u]

-Easily fatigued and exhausted feeling all day, even with good sleep

-feeling run down

-no sex drive

-irritability, anxious, depression on and off (from having all this)

-brain fog, not as quick witted anymore

-poor concentration

-mouth gets SUPER dry after sleeping

-always have to clear my throat

-eyes seem more sensitive to light 

-hands and feet feel swollen at times, but dont visually look swollen

-late afternoon adrenals were pretty high

-and probably more

[u]Some extra information:[/u]

I'm 6 ft tall, like 129.  I've always been really thin.  I was up to 150 when i was in the gym, but lost a lot of muscle since.

Been eating really clean with no alcohol or caffeine for 6 months.

Blood pressure was high last year but looks really good now.

Liver health looks really good.

Low cholesterol.

A big detail I left out in the first post:  my grandfather and greatgrandmother both have hypothyroidism.[u]my ORIGINAL thyroid lab tests[/u] (used for initial diagnosis of subclinical hypothyroidism):

Thyroxine (T4) Free, Direct, S

Test Name        Result Ref Range Units 

T4,Free(Direct) 1.55 0.82-1.77 ng/dL

TSH

Test Name Flag Result Ref Range Units 

TSH           HIGH 7.040 0.450-4.500 uIU/mL

Antithyroglobulin Ab

Test Name                    Result Ref Range Units 

Thyroglobulin, Antibody <1.0 0.0-0.9 iu/ml

reverse t3

test name  result ref range units 

reverse t3 15.9 9.2-24.1 ng/dl

thyroid peroxidase (tpo) ab

test name                           result ref range units 

thyroid peroxidase (tpo) ab 10 0-34 iu/ml

triiodothyronine(t3),free

test name               result ref range units 

triiodothyronine,free 4.1 2.0-4.4 pg/ml" 0.0-0.9="" iu/ml="" reverse="" t3="" test="" name=""  result="" ref="" range="" units ="" reverse="" t3="" 15.9="" 9.2-24.1="" ng/dl="" thyroid="" peroxidase="" (tpo)="" ab="" test="" name=""  =""  =""  =""  =""  =""  =""  =""  =""  =""  =""  =""  =""  ="" result="" ref="" range="" units ="" thyroid="" peroxidase="" (tpo)="" ab="" 10="" 0-34="" iu/ml="" triiodothyronine(t3),free="" test="" name=""  =""  =""  =""  =""  =""  =""  ="" result="" ref="" range="" units ="" triiodothyronine,free="" 4.1="" 2.0-4.4="">

reverse t3

test name  result ref range units 

reverse t3 15.9 9.2-24.1 ng/dl

thyroid peroxidase (tpo) ab

test name                           result ref range units 

thyroid peroxidase (tpo) ab 10 0-34 iu/ml

triiodothyronine(t3),free

test name               result ref range units 

triiodothyronine,free 4.1 2.0-4.4 pg/ml">

0 likes, 4 replies

4 Replies

  • Posted

    Hello, 3 months on a dose is long enough to feel better and for the blood tests to reflect the situation correctly. So something isn't right. You mention adrenal glands, have these been checked to see if they are working correctly? The 24 hour saliva test is reported to be best.. Your body temperature is also still low which would indicate the hypthyroidism isn't yet resolved despite the normal blood test results, as do your ongoing synptoms. It is stated on the patient information leaflet that comes with the thyroxine tablets something like 'not to be taken if have adrenal gland problems' (I can't remember the exact wording). Adrenal glands problems need to be fixed first before prescribing thyroxine else it makes matters worse. I would go back and see your endo and give the endo your symptoms as you've listed here, say you're still having hypothyroid symptoms, give endo your body temperature readings and ask whether your adrenal glands could be the problem. Also ask about alternatuve medication to levothyroxine e.g. NDT (natural desiccated thyroid) as this all the thyroid hormones in that our thyroid makes if it is working correctly (T1, T2, T3, T4 and calcitonin). Levothyroxine conains just T4 and your body has to convert T4 to T3 which is the usable form the body needs. Some people's bodies don't do this cinversionver well.
    • Posted

      'cinversionver' should have said 'conversion'.
  • Posted

    Hello Timothee:

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

    Thank you for the long post that is very well documented.

    Subclinical means not enough symptoms, I know sounds kind of mean. Your TSH at 7.0 is high and that means you have not enough hormone in you.  Normal should be 0.45 to 4.50 and once you have about 3 months of Levo in you they draw some more blood and then adjust the dose.

    It can take about 6 to 12 weeks to see the improvement. Your dose was 25mcg and is now 50mcg so we have to start the clock again and see in another 6 to 8 weeks. Some doctors start low and then up the dose slow so you do not get bad side effects from too large a dose. 

    Now your other blood work looks good and with in normal ranges. Many people who have muscle aches and pains, can have low Vit D. It is a special blood test. I would ask the doctor to do that as there is linkage to thyroid disorders having low Vit D levels.

    Now as a male, and men lose testosterone as you age, and believe it or not, you can lose up to 1/2 of that hormone before age 30!  Easy enough to test for by a blood raw and that can cause muscle aches, being cranky, tired, weight gain, and no sex drive.   I would suggest this blood test, and if your level is low, it can be replaced by a testosterone gel. Low levels of testosterone can also lead to men getting Diabetes.

    Now back to the thyroid. Thyroid disease can come from a few things.

    #1- Family history, gene, trait. Such as Hashimoto's.

    #2-A virus called Epstein-Barr and it attacks the thyroid gland

    #3- Poor iodine in the diet (not seen much in Uk or USA) more 3rd world countries.

    #4- Chemotherapy, illegal drugs, other diseases like, Cancer, Lupus, diabetes, etc....

    Also worth saying is a lot of us may be low in minerals and vitamins, so have the following checked: Sodium, Potassium, Calcium, Magnesium, Selenium, ferritin, iron, Vit. B12.  Also Vit D.  We need good levels of these minerals in our body and to help the LEVO work well.

    Also worth testing is a blood cortisol and a 24 hour urine.  So to rule out any adrenal gland problems and that can also be linked to Hypothyroidism.

    Body temp is low in Hypothyroid people mine is around 97.6. some people are just low. Sometimes I might be 98 degrees. It is hard to say, some people are just a bit lower and it could change once the proper blood/dose happens.

    i think LEVO is working but you are on a low dose still. Next dose would be 75mcg. NDT -natural dessicated thyroid is a fine med, but NHS will not carry it in the formulary. Please give LEVO a bit more time. Each time the dose changes the 6 to 12 week clock restarts. If you are in the USA it can be prescribed.

    Avoid alcohol, take LEVO on an empty stomach no food as it blocks it from working. You need to wait an hour before eating.

    Any questions, just ask,

    Shelly

  • Posted

    Another thought. Have you hsd your Ferritin level checked. This neefs to be 70+ (some say 90) to be wble to convert T4.

    Hypothyroid patients are also often low in a number of vitamins and minerals so getting the following checked is a good idea: iron, ferritin, IBC, vitamin B12, vitamin D, magnesium, zinc, potassium, calcium, copper, selenium, (I've missed one but can't work out which one I've missed).

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.