Thyroid Disorders Community
Very High TSH level
About This Community:

This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Very High TSH level

Hi!  I'm submitting to the forum because I'm very concerned with my Thyroid test results.  I'm a 32 year old female that is fairly active and at a normal weight (height 5'6 and weight 125).  My problems started about 2 months ago, when I visited a doctor and found out the that my blood pressure was high.  I monitored and documented my blood pressure for a month but it remained high.  Therefore, I went through blood tests, adjusted my diet and was taken off of the birth control pill.  The blood test showed my TSH level to be 85 and I was told .5 to 5.5 is normal.  The doctor told me to wait another 3-4 weeks and get retested since going off the birth control pill may alter the results.  Well, its about 3 1/2 weeks later and my level is worse, 135.  I definitely don't feel right.  Very tired, yet can't sleep very well, my muscles ache, can't really concentrate and starting to gain some weight.  Should I be really concerned with such a high level?  Do you think the birth control pill caused this to happen?  
Related Discussions
26 Comments Post a Comment
Blank
Avatar_n_tn
No, the birth control pills didn't cause this.  I've been on synthroid and birth control for 6 years and have never had a problem with my TSH.  I was also on the birth control before my TT and synthroid use and had a perfectly functioning thyroid.
Blank
Avatar_n_tn
I too have been on the pill for about 6 years...I just had a TT on 2/14 and have been on Synthroid since July...It definitely isn't the pill.  You may want to get into an endocrinologist's office as soon as you can.  They are the only ones that can run more detailed thyroid tests.  Good Luck.
Blank
Avatar_f_tn
I had never heard anything about birth control affecting TSH.  I experienced a TSH of "over 150".  I felt awful, extremely tired, couldn't feel arms and legs, heart intervals off, blood pressure was 65/45, heart palpitations, etc.  It was awful.  Once I got on synthroid it took me about 30 days for me to be "in normal range" and about 60 days for me to feel "in range".  Yes, it is dangerous for your TSH to be that high.  The doctors said it wasn't long before I would've been in a coma.  

Good luck!
Blank
205414_tn?1209510759
Thanks for the comments!  I didn't think that it had anything to do with the birth control pills.  But I felt better asking.

I'm still curious if anyone else has experienced such a high level of TSH.  This is just an awful feeling.  But I started taking thyroxine 3 days ago so I'm keeping my fingers crossed.
Blank
Avatar_n_tn
For the first time, my blood report shows
T4=.95 ng/dL  (normal range .61-1.76)
T3=3.2 pg/mL (normal range .35-5.5)
TSH= 66.933 uIU/mL ,HIGH    (normal is .35-5.5)

I'm 27 yr old woman, i'm not under any medication, no birth control pills.
i weigh 133pounds; height is 5' 2"
my periods are regular, i've no health issues nor any symptoms of thyroid like weakness, hair loss, depression,....  ,I've normal Cholesterol

I wanted to know, as the reports show , is TSH of 66 a serious problem.
I'm planning to conceive after 6 months, will it be a problem for me if i have high level of TSH. I've an appointment for family practice this week, i should know somthing by then, but was curious to know.

Please help.

Blank
Avatar_n_tn
EMERGENCY GUIDANCE NEEDED:

I am 36 years old . 1 year ago I started feeling extreme soreness in feet (like I wore high heels for 10 hours the night before). Eventually the muscle pain traveled to my legs, at that time I seeked out my family GP, said something's not right here. THen I got the flu, and was DOWN for the count for 4 days (it was going around in my family) However, I got sick again two weeks after recovery from the first flu. This brought on major left side pain around pancreas area, like muscle pain though. I developed heart palpitations which I felt in lower neck, like morris code.  I went to cardio doc (first time ever) had to wear an ekg vest. I had 56 incodences of heart palps, did thyroid test . Came back tsh level was 9.9.  Sent back to nomal GP  for testing.  (muscle pain getting worse in lower limbs) Before getting on thy meds which I was diagnosed with Hypothyroid at that time, my doc sent me to get a CT scan of kidneys since the pain still persisted all along the left lowest rib area and followed around and near the backside.  I have had this test before , however not for kidneys.  Once iodine was administered I went into shock. Anafolactic shock, HORRIBLE thing to experiance. My throat became burning and blistering with blisters in and out of nose, mouth eyes tongue, ears. Face swelled 3 times it's size, palms of hands, feet, then all airways swelled shut.  The paramedics on site at CT imaging site were scared to death as I had a team of them hovering over me until I passed out as they were shooting me up with something which brought me back.......6 days later and 4 trips to ER I was finally breathing on my own with out aid from machine or benedryl.  Now, my doc was FURIOUS as he never ordered the iodine injection - he retested my thyroid and found my TSH level jumped to 16.9! - I was put on Synthroid, 50ml. I now have been on synthroid since March 14th..... Muscles in legs mainly thigh area on both legs has traveled "up" again to my biceps on both arms, with thighs still remaining as painful. the exact feeling - LIKE I HAVE BEEN IMMUNIZED IN ALL MAIN LIMB MUSCLES WHILE I WAS SLEEPING AND WAKE UP TO THAT SHARP SORE "SHOT" PAIN. My muscle problem is now progressing from sore and stiffness in legs and arms after waking up in the morning to soreness and major stiffness becoming more agressive after sitting. I have to rebend my legs into shape of a standing stance then proceed to walk. If I have feet dangling over something while sitting down, I have to slowly rebend foot into position of flat then start to stand. It had been a year now of the onset of this muscle situation and 4 months of hypo medication, now upped to 75ml since new blood test showed T.4 - 7.4 and TSH - 5.5 as of mid June.  I still can't walk right, currently like a pengiun.  I am going to seek out a neuro and an endo - however I would like to do more research as I know anyone who is having these problems would rest a little easier just to have ANY leads. Are the muscle probs truley just from tsh levels, the areas effected are in the same exact places on both sides. Both biceps areas, and both thighs, like bulls eyes an all 4 quadrants wear darts were played, lol.  My energy level has majorly improved with synthroid meds though, and heart palpitations are near extinct (thank god) but not a change in muscle soreness/stiffness accept worse and seeming to progress further and further up my body.  Also I have noticed I had two bought of the trembels this week both about 10 minutes after laying down to go to sleep at night. BTW - I am a mother of 4 children ages 13,13 (twins), 10 and 6.... I need to get a grip on this soon, thanks for letting me post all of this - Bonnie - Lockhart, TX
Blank
Avatar_f_tn
You need to get your TSH between 1 and 2  and stable before you get PG. If you don't, you can cause serious irreversable health damage to your fetus/baby, as well as miscarriage.
TSH of 66 can be serious even to you regardless of PG!

When pregnant TSH will usually go even higher and med. dose readjusted and TSH kept between 1 and 2 throughout PG.  So you will need regular monitoring throughout term.

GL
Blank
Avatar_f_tn
If your are estrogen whether by nature producing or meds., the FTs (Frees)should be done instead of the Ts (Totals). Also with TSH and FT-4, FT-3 should be done as well, with your Labs reference range.  

Need to wait between 6 to 8 weeks for testing after each med. dose change. If test comes out with issue, retest  in three months to verify the first test, before taking any actions or corrections.

I have never read this extent of muscle issues with thyroid, although there is always the first. Your TSH was high yes, but I have seen higher w/o your issue.  Mine was 29 and I have read others as high as a dangerous 300 and 400.

You are correct to go to a neuro and  endo. However,  make sure the endo works with a lot of thyroid patients per year. Most deal with diabetics more than thyroid.  

Good Luck!

GL

Blank
205414_tn?1209510759
Hi Everyone,  
It's been almost 5 months since I started this topic of this forum.  And I'm feeling great.  I lost the pounds that I had put on, no more muscle aches, no more exhaustion and no lack of concentration.  I've been taking 100mg of synthroid and my thyroid has gone back to normal.  The only thing that stinks is that I have to be on the meds for the rest of my life.  Oh well!  It's now a habit for me to wake up each morning and take the medicine.  The only downfall that I'm experiencing since I'm no longer on the pill is that my periods have been irregular.  Actually my cycle has been 23 days which is can be caused by an underactive thyroid.  If this continues, I may have to go back on it. But thank you to everyone who responded.  I really appreciate the feedback.
Blank
Avatar_f_tn
Glad you are feeling better!
Blank
Avatar_n_tn
Your comments are so close to what happened to me.  I had a CT scan with isovele 370 dye.  My doctor didn't order the dye either. It was suppose to be a no-contrast ct.   I became very ill.  I left the office ok but got very sick that afternoon.  The next morning I woke with swollen hands and feet.  For months I was so ill with headache and illness, I made my husband go with me to get a trust done.  I have been to so many different kinds of doctors. All my doctors said my thyroid was in range.  Then I went to endo. and he put me on synthroid.  My TSH was 5.O.  My range went back to normal with synthroid.  When I went back to the neuro doctor she told me to go off the synthroid because she said if I kept taking I would have to take it the rest of my life.  I went off it but now I once again feel like my feet hurt all the time and are swollen on the bottom. They say I may have neuroapthy in legs and feet. (feel like tight socks on legs.   Sounds like I should go back on the synthroid.  
Blank
Avatar_n_tn
Your comments are so close to what happened to me.  I had a CT scan with isovele 370 dye.  My doctor didn't order the dye either. It was suppose to be a no-contrast ct.   I became very ill.  I left the office ok but got very sick that afternoon.  The next morning I woke with swollen hands and feet.  For months I was so ill with headache and illness, I made my husband go with me to get a trust done.  I have been to so many different kinds of doctors. All my doctors said my thyroid was in range.  Then I went to endo. and he put me on synthroid.  My TSH was 5.O.  My range went back to normal with synthroid.  When I went back to the neuro doctor she told me to go off the synthroid because she said if I kept taking I would have to take it the rest of my life.  I went off it but now I once again feel like my feet hurt all the time and are swollen on the bottom. They say I may have neuroapthy in legs and feet. (feel like tight socks on legs.   Sounds like I should go back on the synthroid.  
Blank
Avatar_n_tn
I have just been through the roller coaster ride of starting out at Hyperthyroid with a T4 of 352, not suppose to be above 170 and having the radio active iodine pill to kill it the Monday before Halloween.  Went through all those symptoms of sweating ALL the time, muscle loss, tremors, weakness to after the pill going into total opposite and totally the wrong way into hypOthyroid with a TSH count of 147, which shouldn't be over, I'm told, 4.0.  Was sleeping all the time, sleeping with a sweater over my pj's, cold, my face looked horribly puffy, eyes looked like I hadn't slept, my energy levels just deminished to nothing, put on 20 pounds in a month and a half, voice went hoarse and rhaspy, hair was dry, muscle cramping through out my body while turning or putting on stockings, or reaching, down and feeling like there was nothing to smile about or laugh at and blood pressure went up, sugar levels put me in 'diabetic' state.  I was put on Synthroid 100 but my endo told me to take 2 of the 100's for 3 days to give my body a boost.  My regular doctor told me I was very, very close to being in a Myexdema Coma.  I said Oh my gosh!  I have been on the 100 synthroid now for 2 and a half weeks and I'm finally feeling like my old self.  Now I just have to get back doing my old active, energized activities like rowing and getting to the gym.  Oh and synthroid is not a medication, it's a hormone that your thyroid used to produce.  So you are just replacing what is not being produced.  Not a med, just a hormone.  I missed myself all those months and didn't really know what was going on or how I was gonna feel.  But now that I went in both directions, I will always follow through with the blood work and make sure I am 'in the range' so I never feel like that again.  thanks for letting me post this.....quzie59
Blank
Avatar_n_tn
I have been had a problem of irregular periods for the past 5 yrs..Two years back I got a a thyroid test  was done and tsh level  was around 7 to 8..I was prescribed 25 microgram of throxine..But I got to know that once you start  taking it you have to take it throughout life..After that i was on pills ..I again got a thyroid test done after a year and the level was normal.This time I was on pills..I left my pills in dec 2007..my cycles were regular for six months but now again i started having irregular cycles ..I got my thyroid test done and level shot upto 16..I have been asked to take thyroxine..I want to know the consequences..Will I have to take it life long or can I stop taking it once the level is normal..What are the side effects??Should I get it tested again?I am 23 yrs old
Blank
Avatar_f_tn
I am also 23 years old and have been on synthroid (same as thyroxine, different maker) my whole life. I was born without a thyroid gland. Once you are diagnosed with a thyroid disorder you have to take the thyroxine for the rest of your life. There is no quick fix. But the great thing is, there aren't side effects. So far I haven't heard of any relative/ or friend (its actually quite common) that has had an adverse reaction to a thyroid drug. I'm sure there are people out there, but I haven't encountered any yet. The best thing would be to see an endocrinologist. They specialize in thyroid and similar disorders. Usually once you start the medication they want to test your levels after 6-8 weeks. If your levels were 16 then more than likely your cycle becoming irregular is due to your levels. Hypothyroidism symptoms include: Tired, weight gain, crankiness, irregular cycles, hair loss, dry skin/hair. But all the symptoms dont need to be present to have hypothyroidism. Long story short, see an endocrinologist, there's nothing wrong with taking the medication all your life if it keeps you healthy.
Blank
Avatar_n_tn
I had thyroid cancer, twice yes twice.. even with a total thyroidectomy. the short of this is.. I am experiencing the exact leg,muscle pain as yourself.. I too am a mother of 4, only I am also a grandma.. I today am in agony.. I got the flu, then became really ill with the flu, but no sneezing, phlegm, nothing like that, but a seriously bad sore throat with bulging glands, nodes in groin and armpit up and painful.. today 6 weeks on throat is painful as hell with bulging glands, had ultrasound today.. have not been able to work for 2 mths.. I am a swimming teacher, but have not one once of energy and keep sleeping, but not able too, headaches.. but I think I found out why my tsh is high.. 5.6.. it needs to be around 0.01.. for me.. I have been taking a health supplement to get my hair growing again, after a lot of radiation, two serious lots in past 5 years and then again major radiation complications 2 years ago. so i thought I would kick start my hair with this stuff only to figure out by myself , after 3 doctors in 1 mth keep saying, just WAIT.. .wait for what?

I went on net, researched the stuff I am on, and it clearly states online DO NOT TAKE THIS WITH THYROXINE REPLACEMENT HORMONE, ( I am on that) AS THIS WILL ABSORB ALL THE THYROID HORMONE.. because over the past 2 mths I have been getting weaker and weaker and the muscle, bone pain is horrendous and it was just like i was off my thyroxine in preparation for more cancer treatment.. so today I went to see a pharmacist, who also looked it up and yep.. this hair stuff, comprising of mostly zinc, silica and iron is taking all the thyroid hormone, sending my tsh sky high and rendering me totally useless.. my youngest 16 takes it also.. I am going to get her to stop.. I phoned the company, they agreed yes, stop taking it immediately and they will suggest this should be on the bottle.. Take Care Jennifer.. I hope things have improved..
Blank
Avatar_n_tn
I need some  help with my thyroid malfunction problem. I am a 38 year old woman.12 months ago, I had no thyroid problem - my TSH was within the range of .45-5.5. However, 2 months ago, my TSH was 6.7 so the doctor asked me to take synthroid (.25mcg). I took it for 2 days but both days, I felt miserable so I decided to quit taking the medicine and tried wholistic approach (diet, exercise). I felt fine. In my blood test after 2 weeks, the TSH level had worsened (7.828) so I started the medication.My thyroxine (T4) was 11.5 (Normal 4.5-12) and my thyroid peroxidase (TPO) antibodies was high 208 (Normal 0-34). I am not sure why my TSH is high when the thyroxine level is very close to the upper range. As I understand it, the TSH (released by Pitutiary gland) increases only when the thyroid is malfunctioning (i.e. the T4 level is low). However, that does not seem to be the case here. I am taking synthroid but I feel very weak. My joints hurt, I feel depressed (I have a lovely life, there is no stress at all) and have more frequest bowel movements. I have an appointment with an endocronologist as my primary doctor could not answer my questions but I am not too hopeful that I will find the right doctor to help me. I need to understand if there are other reasons besides malfunctioning of thyroid that can create high levels of TSH.
thanks so much.
Arpita
Blank
728315_tn?1399574142
I am age 43.  I have had thyroid problems since age of 21.  Mine was discovered because of  initial comlaint of headaches, nose bleeds and breast producing milk (lactating). The doc did blood tests and saw high testerone levels so he sent me for a ct scan and found a pituitary adenoma ( not cancerous).  I followed up with neurosurgeon and was sent to endocrinologist.  The endocrine doctor did extensive blood work and it was determined I had hypothyroid.  I had a high TSH.  The way she explained it to me was that the Pituitary is a master gland to all other hormone producing glands including thyroids and adrenal etc.  When there is a problem with the hormone producing glands the Pituitary works harder and releases TSH ( sort of like adding gas to your car to make it go).  Apparently there must be something going on with your Thyroid gland.  It's something that has remedy because an endocrine doctor can help put you and the right meds and you will feel much better.  This is a lifetime type problem but under right care and right meds you lead a perfectly normal life.  You really need to see the endocrinologist for this.  You will be fine.  This is the least of my worries since I have other health issues that are more debilatating such as Lupus and Sjrogens.  I have had Hypothyroid for 22 years and never had any trouble as long as I stay on my Levythyroxine (synthroids).  It's frustrating not knowing but you will find relief.  God Bles
Blank
728315_tn?1399574142
Sorry, I didn't finish my posting above.  I think you should have your PCP check your blood for any inflamatory disease such as Arthritis, Lupus, Sjrogens etc.  Depression and weakness can come from low thyroid but the joint pains are usually not a symptom of thyroid disease.  Do you get low grade fever like 99.5 or 99.9.  If so, let them check you for Lupus.  I do know this and I try to keep it in mind; when you think negative you feel negative and your body reacts to that.  Try to get a solution by insisting that your doctor checks the ANA, Sed Rate and any other tests for inflamatory diseases.
Blank
Avatar_n_tn
Hi Everyone

My T3 and T4 are normal, but today my TSH is 24.33.

Before taking medication my TSH was 7.11
After a month it was .5
again after 2-3 months now it is 24.33.

What should i do, I m taking medication under doctor supervision
Blank
Avatar_m_tn
So I 20 yrs old 4 ft 8 and 70 pounds have been taking levothyroxin (levothyroxine) for about a little over two months my initial TSH level was 406.5 My Dr started me on 75 first. I went back a month later and my TSH level was 17. He raised my dose to 125. I took that for a month and i went to the ER because my heart rate was 150 and it was difficult to breath. They told me that my TSH level was 0.06 and my iron level was 28 (normal is 45)and not to take my meds till it slowed down. I went back to the doctor and he lowered my dose back to 75. He said we may not have given it enough time to keep lowering. I havent started it again yet because my heart rate is still high. I plan to start it in a few day if it has slowed down. So i guess my question is, How bad is a TSH of 406.5?
- Courtney
Blank
Avatar_n_tn
Are TSH levels mostly for women or do men experience this as well?  We, my husband and I, had a bloodtest done at the hospital and it says that ours are high.
Blank
Avatar_m_tn
hello i found out i was hypothyroid in 2008 when i concieved my daughter i was taking synthroid and felt fine.. Just recently in oct of 2010 i found out i was hypo again and was put on 100mcg synthroid on oct 21st i went to the E R cause my blood pressure and heart rate was high, was told my tsh level was low...went to the E R again on dec 29th 2010 and was told my tsh levels were 0.16 i have the same symptoms of anxiety attacks..heart racing high blood pressure sweating chills etc... what should i do i cut my synthroid 88 in half and cut the half in half to make it 22 i really dont kno what else to do please help
Blank
Avatar_f_tn
Hi! I was recently diagnosed with Hypothyroidism last summer. I was having some severe pain in my abdomen. I started seeing a gastrologist. We did an endoscopy and found nothing. Later a blood test came back showing my TSH levels over 300!! I was very shocked because other than the severe abdominal pain I had no idea that I was having a thyroid problem. This did bring a whole new light to a situation I previously had. About 6 or so months before my diagnosis I had unfortunately suffered a miscarriage. After talking with my doctor he did say having hypothyroidism and going untreated can cause a miscarriage. It is very important no mater what your levels are to get treated and also that your ob/gyn monitors your levels regularly in order to prevent complications!! Hope this information helps you, and you don't have to go through the horrible loss of a child. God Bless!
Blank
Avatar_f_tn
Hi my name is Louise I am 24 years old I am 5ft tall I now weigh just under 8st which is a stone heavier than usual for me. I have a 6 month old baby boy. over the past month i have developed all the symptoms of having a low thyroid. my doctor looked at me as if i was crazy. But sent me for blood tests for everything possible just to put my mind at rest. and my results came back that i had a low thyroid. my T4 level is 1.3 and my THS is 108 the doctor said she's never seen results like it before in her life. she was shocked!! i've been panicking and going out of my mind trying to find out why this has happend. but looking on this site, im not the only one with very high THS levels. some are seriously worse than mine. what happens if it keeps getting higher???
Blank
649848_tn?1357751184
This is a very old thread and many of the people who posted on it, no longer participate in the forum.  

Your TSH is very high.  What is the reference range for the T4 and was that Free T4 or Total 4?  Free and Total are not the same thing. Reference ranges vary from lab to lab, so must come from your own report.  

Your doctor also needs to be testing for Free T3, which is the active thyroid hormone, but many doctors don't do that. You will have to ask/push for that....... Have you been tested for thyroid antibodies to confirm/rule out an autoimmune thyroid disease, Hashimoto's Thyroiditis, which is the most common cause of hypothyroidism in the developed world.

I see you are in UK and some members find it very difficult to get adequate testing/treatment in UK, due to regulation of the NHS.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Thyroid Disorders Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Thyroid Answerers
649848_tn?1357751184
Blank
Barb135
FL
Avatar_m_tn
Blank
gimel
MI
168348_tn?1379360675
Blank
ChitChatNine
1756321_tn?1377771734
Blank
Red_Star
Queensland, Australia
Avatar_f_tn
Blank
goolarra
Sisters, OR
Avatar_m_tn
Blank
flyingfool
WI