TSH over 100 ?!?!?

Has anyone on here had a TSH of over 100?  Mine came back as over 150 which is extremely high with Free T4 level of .20 which is low--thus I guess I have hypothyroidism, which would explain why I've felt so terrible for weeks/months now...to the point of barely being able to drive to work without falling asleep, etc.  

Just wondering if others on here had TSH levels over 100 before and what did they do to combat the fatigue until they were able to see an endocrinologist (one that I called didn't have an opening until December--two months away!!!).  

I had ultrasound at hospital done today and they said they would send results to my Primary care dr. who would call me re: results.

My mom had thyroid cancer when she was in her 40's and I am almost 31 years old, just had a baby 5 months ago, and thought I was just so overly exhausted over the baby, going back to work, etc.  Luckily my OB/GYN noticed my thyroid glands felt really swollen when I was telling her how tired I have been, to the point of crying and wondering what was going on, why couldn't I handle motherhood, why am I so exhausted all the time, gaining weight even though i am eating less, breastfeeding, exercising when i have a little energy, etc.

I'd like to hear other's stories with such elevated TSH levels...what caused such high levels for you?  how did you deal with the fatigue until you could see a dr., etc.?  what ended up being your treatment, medication, etc.?

[Ga7]

I had a TSH of 120 from not taking my meds for 20 years and I crashed harm. You need to get to the Doctor and get started on replacement meds. You will not get better, you will really get more tired and probaly pretty dizzy at times. Need to get started back on somthing.

[Helena504]

Ga7--so your TSH levels hit 120 after not taking your meds, for how long?  did you not take your meds for like days or weeks?  

I've never been on meds before for anything and the only reason my dr. had me take the TSH blood test was because she thought my thyroid glands felt swollen and i was complaining about how tired I was, etc.  Everyone chalked it up to "oh, you are a new mother, of course you'll feel really tired..it gets better, etc..." so I am lucky this dr. took me more seriously and had the blood test done.  But now I'm just trying to figure out what that blood test result of TSH level over 150 means.  She did say they had never seen such high levels in anyone at their practice before so to go see an endicronologiest ASAP.  How do you get an appt with an endocrinologist quickly though?  I've been calling around to several in my insurance plan and they all don't have appts. until a month or two from now.  I think that's CRAZY!!! I can't go on feeling the way I do for that long!  I mean, I almost fell asleep driving to work!  I get dizzy already which scares me when it happens when sometimes when carrying my 5 month old baby girl!  I guess I feel lost and am not sure how to get an appt. sooner.  I called my primary care dr. about how I couldn't get an appt. with an endocrin. sooner and they haven't returned my calls.  ugh!

obviously since this is all new to me and haven't even been able to see an endocrinologist yet, i don't have any meds to "go back on".

any suggestions out there?

[AR-10]

Call your PCP (again) and tell him/her you want them to get you an appointment with an Endo that treats thyroid patients, not diabetics, within three days, or drugs to tide you over. Tell them your TSH is over 150. Your doctor can call an Endo and make an emergency referral/plea for an appointment now.

Your doctor can perscribe thyroid hormones, too.

Did your OB/GYN send a copy of the bloodwork to your PCP? Call and call and call (politely) till you get some meds and an appointment that is NOT two months away. Be a squeeky wheel.

I've done it more than once. It works. Do not put up with being put off.

[AR-10]

My TSH was 120.0 at one time. Long story, no happy ending yet.

Many posters here have been there for a short time, often as part of therapy. It is not healthy, and until you are on meds, it will climb higher.

Synthroid will start dropping it right away. The sooner, the better.

Best of luck to you.

[Helena504]

My ob/gyn said they would send the results to my PCP, but i don't know for sure if they have or not.  I think I might just suck it up and make an appt. with my PCP for same day so I can meet face to face with my PCP and say PLEASE do something NOW and get me to see an endocrin. ASAP.  It's already  been TWO weeks since this lab result and I just keep feeling worse and worse each day.
Thank you for your responses so far.

[Ga7]

I had my thyroids totaly removed in 1983, nothing left,ultrasound showed nothing. I took my meds the first couple of weeks after that and felt awful. So I started taking it once a week. and feelt alot better. Sometimes I would go a month without taking it. I did this for 20+ years and then it hit me about eight months ago,when I was feeling a little dizzy all the time. I never had my TSH tested during this 20+ time frame for I hate doing drugs, So they tested my TSH and it was 118,so I was taking every day again, and after three days I really crashed, I think I stired the pot by changing what my body got used to. I really dont like taking Aleive, or any over the counter meds. So since I have been taking my Brand Synthroid now for eight months every day my level is now normal, but I have felt bad every since I have been back on it.

[mamaof5]

[mamaof5]

I was diagnosed with thyroid surgery in May, 2004 (when my youngest son was 5 months old) and was informed the first of June, 2004 that it was cancer.  I took a round of RAI and placed in isolation from the middle of June to the end of July and was eventually able to return to work in August, 2004.  I see my endo every 6 months.  I am cancer free and was doing well.  For the past couple of months I started feeling very tired, achy muscles, leg cramps, nervous, and just felt bad.  Kept telling myself it is because I am 43 years old and have a son who is almost 4 (plus work full time as a paralegal and have returned to college full time).  Anyway I went to my doctor for my annual physical on Fri. Oct 12.  Yesterday my doctor called and stated that my TSH level was 125.8.  He was very concerned.  He immediately called my endo and informed him of the situtation.  My endo's nurse called me this morn at 7 a.m.  and they too were concerned.  She spoke with the endo and called me back a little after 9 a.m. she stated that my endo said I must not be taking my medicine correctly.  I was very hurt by this statement due to the fact that I faithfully take my 2 pills of .112 thyroid medication every evening.  To make this story short we have discovered when I had my prescription transferred from 1 pharmacy chain to another pharmacy chain the first chain did not tell the latter chain that my endo writes my script for brand name only.  Anyway I was taking a generic brand of thyroid med.  Found out this morn that generic brand does not work as well as brand name for cancer patients and even the cancer can recur (according to my endo).  I contacted both chains and they too said generic thyroid meds should not be taken.  When I questioned the 1st chain as to why the latter was not told that my script stated no substitiution they of course had no answer.  Anyway my endo stated the danger of a 125 level could be a heart attack, coma or even my cancer resurfacing.  SO PLEASE IF YOUR DOCTOR PRESCRIBES THYROID MED PLEASE TAKE IT.  I am now scared that my cancer will come back.  

[sweety25]

Hey I am 25yrs old, my TSH is 120, but still i am losing weight.. i am just 43Kgs, dnt know what is the reason, very worried about my health, i always feel sleepy and tired.. Please someone tell me will i have any problems regarding preganacy (pregnancy)

[WidowNyt]

My TSH is over 150 and my doctor didn't even have the decency to talk to me about it after my blood work came back from the lab.  He had a nurse call me.  What an ***!  She also informed me my cholesterol level is over 400 (shouldn't be over 200) and my triglycerides are 400 (shouldn't be over 150).  I been sick for roughly 6 months now so I was in the perfect mood to give them all a little idea of what I thought of their professionalism.....in person.  I've never weighed over 105 until now (outside of pregnancy) and I'm up to 135 so far.  Everything hurts and I have every symptom appropriately possible, it seems.  Today I started my medications so I'm really excited at the idea of feeling a little bit better day by day (even month by month looks good if it takes that long!)

[gimel]

You'll probably need to go back for followup testing in 6 weeks or so to see the effect of the medication on your thyroid levels.  When you do, insist that they also check for the actual, biologically active thyroid hormones, FT3 and FT4.  The  "Frees", as we refer to them, are most important test for determining your status and for adjusting meds to relieve your symptoms.  These are not the same tests as total T3 and total T4.  You need the "Frees" so that the doctor is not trying to adjust your meds based on TSH alone.

You might get some useful info from this link.

http://www.hormonerestoration.com/Thyroid.html

[bradpitt768]

I am 30 years old, my tsh reading was 100 before 8 months. I used to feel very tired, sleepy, over weight and dull and easily got exhausted while playing football and my muscles used to ache after each playing sessions, and also was difficult to overcome injuries.

I consulted a doctor with my test results and he recommended to take the medecine called thyronorm 50 mg. i have been having this medecine for the last 8 months and some regular exercises(sarvangasana is a good option). Now when i checked my tsh, it has fallen to 6.67( still not normal). But i feel better now. Have reduced five kgs of weight also.

[dponti62]

Mine got up to 173 ( two months post thyroidrctomy due to cancer) and that was two weeks and before my RAI treatment. I now have cardio problems because of the quack doctor. Got a second opinion and new meds.....feeling better. Only time will tell if my heart problems reverse. New doc told me the other day I was lucky not to go into a coma or death. He estimated my tsh was probably 250ish when I had my RAI.

[arifanayeem]

advise?

[HessyKat]

Wow, I was just reading these older posts about high TSH and I really scares me that it can get that high. Mine went to 6.0 about three months ago and I felt absolutely horrible. My ears were ringing so loud and dizziness, well you know all the hypo symptoms. I still am having trouble and feeling not so good but symptoms arent as bad all the time. I just am making a statement that I cant imagine how these people felt with a TSH above 100.
Hope everyone is feeling better.

[stopsmellroses]

Doctors routinely have their nurses call patients to report lab results and schedule follow ups.  It is not nice for you to accuse them of indecency.  You would have the right to be upset if they did NOT order the lab work and didn't request follow up. Hopefully you are getting the treatment you need and stop pointing blame where it isn't warranted.

[Deprosun]

Hi all,
I had TSH level 453.2 the first time and over 500 the second time. Doctors and  my biology teachers were astounded looking at the fact i don't feel any symptoms. I dont know what to conclude, my teacher says i probably have a mutation. My dad has thyroid; probably genetic. But According to my prof, i should not be alive. Now i am on medication.

PS: I am 20 male.  

[ZineAthena]

My daughter is 15.  She was diagnosed two years ago with Hypothyroidism.  Unfortunately, making her take the medicine has been a battle.  If my memory serves me correctly, her TSH levels when first diagnosed was around 120.  We were told that they highest should not be more than 4.  They told her that they needed her to level out on her medication before they could run the tests to figure out what may be causing it.  So we have been struggling for two years but she has been taking her medicine for the most part.  However, she goes through spurts of not taking her medicine for sometimes a month at a time.  I can't shove them down her throat, so I just have to fight with her on it.  Well, along with Hypothyroidism, she was also diagnosed with extreme depression and bi-polar disorder.  I have had a sinking feeling since this whole thing started that if she would just take her medicine, we may find that these mental diseases would level out.  Well, now we have another major issue.  Well, a couple to be exact.  My daughter and I just found out she is pregnant.  I know, before you guys start harping on me about my 15 year old being pregnant, I already know, and there is nothing you can tell me that would make me feel any worse.  On top of that, they also have discovered that her level is now at a 450.  Her doctor actually told her that she should be a fat pig who can't walk or talk.  He is completely baffled by her. She is skinny, and shows no signs of slipping into a coma.  He has referred us to a endo.  And we have our first appointment tomorrow.  Yesterday,when we found out her levels (they checked twice) we got a phone call after we got home for her to come in immediately for an ultra sound on her thyroids.  We don't have the results back yet, but they have also made an emergency appointment in another city as none is available here until Tuesday.  My fear, I have read that it can harm the baby.  My fear, that there is something terribly wrong with my daughter.  My fear, they tell her she will have to abort, and I loose her all together as she is such a fragile girl.  

[goolarra]

I wish I could tell you otherwise, but I think all your fears are totally warranted.  Yes, it can harm the baby or even cause miscarriage. Yes, with a TSH of 450, there IS something terribly wrong with your daughter.  And, finally, and most hopefully, yes, if she would just take her meds, there's a good chance her mental issues would resolve.  

Not everyone reacts the same to thyroid hormone imbalance.  Some of us gain weight, hypo or hyper, some of us lose weight with either.

Your daughter's FT3 and FT4 levels should be tested immediately to make sure they support her very high TSH level.  If those levels are low, she needs to be on meds.  If they aren't, then a pituitary issue could be indicated.  

This is a very old thread.  You;d get more attention to your individual concerns if you started a new thread of your own.  That way, you could get your concerns in the headline, wherre people could see your specific issues.  Just go to the top of this page and click on the orange "Poasta Question" button.  

Good luck to you both.