High TSH

I recently had blood tests performed for screening for a study testing the diet drug Remonabant (sp?).I was disqualified due to my High TSH results. My blood test came back with a reading of 13.8 for my TSH and 1.3 for my free T4. I do take 100 mcg of Levothroid, but I can't see that it does anything for me. I have  been back to my doctor twice since I started taking the Levothroid about 18 months ago and he said nothing needed to be adjusted. I belong to a health plan that offers only Kaiser (California resident) and it seems to be the pits as far as health insurance. I am grossly overweight, I feel horrible. I last lost weight by walking two hours a day everyday and staying on the Atkins induction diet for about two years. (seriously).  However, I hurt my knees and had to stop walking for about a year. Then I gained back the weight. I have fasted for two weeks straight (drinking water and broth and V8 juice) and I lost absolutely no weight...not even water weight. I have eaten under 900 calories regularly since I gain rapidly on a higher intake. I walk everyday- about an hour, I do step aerobics daily. I cannot budge the weight. My hair is very thin, I take 4 tablets of Vitamin A daily and that has stopped my hair loss. I have no nails to speak of, they just flake off. My skin is dry and rough. Any ideas, anyone?

[utahmomma]

I'm not that familiar with Kaiser but can you go to another doctor - preferably an endocrinologist who deals with thyroid problems?  Even if Kaiser won't let you, is it feasible that you could go out of network and even pay cash to a competent doctor.  Sometimes if you explain your problem and the limitations of your insurance (and the "health care" you've received on that plan) some doctors will work with you on their fees.

First of all, your TSH is way too high.  The optimal goal most endocrinologists will aim for is 1.0.  I was originally put on Levothyroxin (levothyroxine) and it didn't work for me (or my sisters).  I have to be on Synthroid.  You need a good endo to adjust your meds.  Many, or most, of your symptoms seem to be hypothyroidism.  I think most of us who are on thyroid meds have been through trying at least one or two different brands of thyroid replacement and countless levels of those medications.  I have gone from .075 to .200 in less than three years and been switched from Levo to Synthroid.  Thyroids are very tempermental and none of us react the same to the medications or levels of medications.  It takes a competent endocrinologist to help us get through it all.

Second, you mentioned you are overweight and Atkins worked for you.  Atkins is a carb-control weight program that is based loosely on the American Diabetic Association's program (the ADA program is much better though - much more balanced).  Have you had your blood sugar checked?  Preferably with an hgA1C which has to be run by a lab?  This test will tell how well your blood sugars are being controlled.  Fasting and limiting yourself to 900 calories a day could really be detrimental if you are diabetic.  You need to be eating 5-6 small meals a day and keeping your carbohydrates under 15g per meal.  Your V8 juice alone blows that away.  I'm just asking because diabetes and thyroid problems go hand-in-hand for many of us.

Here are some web sites that may help:
Thyroid:
http://www.endocrineweb.com/
http://www.cumc.columbia.edu/dept/thyroid/

Diabetes diet:
http://www.eatright.org/cps/rde/xchg/ada/hs.xsl/index.html
http://www.diabetes.org/nutrition-and-recipes/nutrition/overview.jsp

Last thing:  Having a high TSH level and being overweight (and having injured your knees) could all contribute to depression.  Having incompetent medical care really doesn't help the situation at all!  It can all seem overwhelming and never ending.  Please ask those around you to keep tabs on you and your moods as you may be slipping into depression (most of us have or are still dealing with it).  You do need a competent health-care provider to bring ALL of your levels in line.

Please let us know.

[GravesLady]

utahmomma has some very good points and I agree about your symptoms which are typical of hypothyroidism. You need to up your med. dose of Levothroid and keep upping until your TSH reaches approx 1.0.  13.8 is too high and too high for the dose you are taking of 100 mcg, its a wonder you can function or get out of bed. You also need to have blood test done at least once a year after you are regulated on the meds and have you TSH at 1.0 for a year.  Until then, blood test needs to be done no less than 6 week after each med dose change. Also with TSH and FT-4 have FT-3 done as well and if they warrant have antibodies done.
Get copies of your test with Labs reference range.  When you went 18 months ago your levels were probably ok at that time.  However, things change with time, with age, thyroid condition, invirmental conditions, health conditions, etc. and  that is why it is suggested that women have thyroid test and thyroid physically check once a year.
Once you get your TSH to 1.0, your weight should pretty much resolve itself, although maybe with some help diet wise, but I don't think it will be as bad as with your TSH at 13.8.
Kaiser is kinda strict due to being a HMO, but see if they will refer you to an endo, at least until your  thyroid issues is under control.   If Kaiser gives you a problem, stick up for yourself, fight for yourself - insist, insist insist!!! After all, its your money and your health. Good Luck!

Kaiser saved my husbands life.

Happy Hoildays

[Puffins]

I feel like I must add a comment.  I do agree with Graveslady 100%.
I am also a hypo and Kaiser member in California and I must say that my doctor refered me to an Endo right away after I REVIEWED my lab results and educated myself on what it means. PLease call your doctor back and have him/her make a referral to a specialist. If he/she objects call member services immediately to complain.
You are the customer and also a PAYING member. And if really necessary change doctors, I have done it several times and now I finally have someone who tries to listen for the 7 alloted minutes.

Also referring to an outside doctor is not always possible because you have to have a referral from your primary doctor.  And many times private specialists do not accept cash for office visits because they rather deal with insurance companies and if you have Kaiser you don't have too many options in that case.

[Joyly]

Hi-
I did not add that my Kaiser PCP is an internist, not an endocrinologist. And I was also tested for diabetes in the study's preliminary tests. I was high normal before the glucose test (after fasting all night) and two hours after drinking the glucose solution, I was below normal. So diabetes doesn't seem to to be in the picture at the moment. Thank you all for your information. That 13.8 TSH doesn't seem right to me either.

[kris123]

Get a new dr.  My TSH level is 4.7 and I am preggers.  My dr. would not increase it.  I am going to another dr.

[GravesLady]

If Kaiser does refer you to an endocrinologist, make sure it is one who deals with a lot of thyroids per year.  A lot of endo's are not thyroid smart and specialize in diabetes more than thyroid. I know from experience - went to one once! and what a waist of time and money! I was only give two choices for endo's
and I guess I picked the wrong one.
I have been going to an internist from the get go, 10 years. I am training him ;) But most important, he is willing to work with me, also listen and hears me. Good LucK!

Happy Holidays!

[isbella2]

My tsh level is 67. For some reason, I frequently forget to take my synthroid. I'm a busy professional, running a business. I'm feeling very tired, and everything hurts--muscles, joints, headache. Plus I'm uncoordinated and forget a lot. I thought it was arthritis and weight gain. I never realized how serious it was to have a high tsh but now I'm wondering if I have permanent damage because of my neglect. I read a comment where someone else had a 50ish level. I've been taking my synthroid for 4 days regularly. Does anyone know how long it will take to feel better? I didn't realize how bad it was until I see that other people worry when the level is 6-7.

[GravesLady]

A high TSH (hypothyroidism) should not do damage as long as it hasn't been high for very long.
Forgetting to take meds. once in a while will not do any harm.  The meds stay in our system for at least 6 days, on a accumulation bases.  What you take today will be tomorrow and  up to the next 5 days thereafter (total of 6 days).  Short term hypo can cause minor symptoms such as future, musicale/joint pain, etc.,  and long term hypo more serious such a heart issues, etc.  So don't make it a habit to miss because you will find that you will be missing more and more and more. Instead, make it a habit to take them, not a habit to miss them.
I put my meds in a 7 day pill container with the days marked and  put the container by my tooth brush/paste so when I go to brush my teeth in the morning they are there to take.  You should take your thyroid meds first thing in the AM before doing anything else.   Whatever the first thing that you do upon arising in the AM, put you pills there.  However, if other states are like Ca, don't carry in the car/purse, without them being in the prescription bottle....its against the law here to carry otherwise.
How long it takes to feel better is an individual matter, along with how long levels were out and how high.  The higher and longer, the long the healing.
Hypo effects all parts of the body, that tiny little gland is a power house of health, so don't underestimate it or it's diseases. You should be more responsible to yourself, after all, you deliver it or better.

Feel better soon!

[isbella2]

Thanks for your response. I have been yelled at by doctors for the last 10 years for not taking it responsibly and regularly (Synthroid). I went to Mayo clinic where I was diagnosed. Since then I've been seen by 2 endocrinologists at the University Med Center. I want to feel great, not just getting by. Part of my current problem is that I sleep in multiple locations (three) and also travel. I sleep at my house, boyfriends house, sometimes a cottage and also occasionally at my office. On top of that I travel on business. I'm always trying to get organized as to where my shoes are, where my cosmetics are, where my business clothes are, where my casual stuff is --on and on. It's very confusing sometimes. Just as I think I have it all togeher--then I don't. It seems so simple--just keep my med with me at all times. Well, now I'm making it a priority. I can't afford to lose everything because I'm comatose. I think that seeing these posts are what convinced me. This summer I had unexpected swelling and itching which rendered me as rather grotesque since it was on my face. I went to the allergist. After lots of testing they decided it was my Hashimotos. Even THAT didn't make me take it regularly. Recently I tripped and fell in the middle of a tram track in Amsterdam. I had blood in my hair, on my face, the ambulance of all things was called. That experience made me think (I was kind of stumbling around, told everyone at home that I was "pushed")maybe it's my Hashimotos. That plus reading the posts at this site, plus my son nagging me constantly has me convinced. I left pills at my office on Friday, made a special trip in to get them so I didn't miss a day on Synthroid. Thanks again.

[GravesLady]

You might want to tone down your work related life style if possible.  Stress, mental and/or physical, can effect our immune system and play havoc with thyroid disease. Plus if you have a busy work/life style you probably have  little, if any, time for immune-restoring activities like aerobic exercise, muscle building, or slow stretching, let alone sleeping and eating right. Keep in mind that what is disruptive to the immune system now, may be disruptive to a thyroid gland later. Learning to be less stressed, will probably reduce the likelihood of triggering further autoimmune difficulty as well as other autoimmune disorders.

Taking our meds daily is just part of our thyroid health.

Good Luck with taking your meds.

[dre22]

Joyly,

Your TSH level seems high.  My understanding from my doctor, on campus, is your level should be between .5-2.5 (?), but it may depend on the type of testing used.  My level finally went down to 9 (approx.), but my doctor was still concerned and upped the dosage to 200mcg.  Unfortunately, my symptoms persisted, and my levels went back up to around 15 with the increase.  Even if the top of optimal range was at 5, I would still be triple what I should be, so the doctor increased my dosage again to 300mcg/day.  I know I am not a doctor, but it would not hurt to request a second opinion.  It may be that you need your prescription increased, but I am not positive.  We are talking about your health, and that is important.

[DrDale]

I had a recent routine physical and blood test.  My TSH came back at 56, very high.  It had been 17 a year earlier.  I'm a 55 year old male, relatively normal weight, no sypmtoms.  Good energy and sex drive, no problem with cold hands or feet (and it's winter in Michigan)good energy and sleeping fine.  Not a lot of stress.  My family doctor prescribed synthroid 50 micrograms daily. I've read some about thyroid problems with normal blood tests, but very little about high TSH withoug symptoms.  Anyone with experience or opinion in this circumstance?

[Semi23]

My TSH is 6.something and i recently found out about it and my doctor put me on levothyroxine 25 mcg .. i am 21 and i weight 115.  I have been eating so much to gain at least 5 to 10 pounds but it seems like that cant happen.. I also take ensure(a shake that makes u gain weight or maintain your weight) and i do c little of results..i also was wondering if i miss to take my pill in the morning, is it okay for me to take bunch of hours later or even after 7 pm

[marymary820]

My Tsh is 45 but my Doctor has no put me on any meds yet until he gets my antibody test results back, I have no symptoms of hypothyroidism can anyway explain this? plus is it safe to leave me unmedicated for two weeks?

[goolarra]

TSH is a pituitary hormone.  It can be influenced by many factors in the hypothalamus/pituitary/thyroid feedback cycle.  It is often not a reliable indicator of thyroid function.  Did your doctor also test FT3 and FT4, the actual thyroid hormones?  If so, please post with the reference ranges from your lab report.

With a TSH of 45 and no symptoms, you may have another issue, perhaps pituitary, going on.  Two weeks is longer than an antibody test should take to come back, but if you are asymptomatic, two weeks is nothing to worry about.

[marymary820]

hey thanks so much for your response! my T4 was 9.5 what does this mean? but i have not had a T3 test. I have started to feel dizzy but think that might be because i am due on - sorry for the information but i don't really know how hypothyroidism is meant to make you feel. I know my cholesterol is 6.1 but my doctor thinks that is due to my family history - i am only 27! i get worried as i look on google and see things about comas and things and it freaks me out!

[goolarra]

Do you have the range on your T4?  And is that a free T4 or total T4?  If it doesn't specifically say "free" or "FT4", then it's total.

You can google "hypothyroidism + symptoms" to get a list.

High cholesterol is a hypo symptom.

If it makes you feel any better, when I was diagnosed, my TSH was 60-something.  I know it had probably been high for quite some time since I had had symptoms for a couple of years at that point.  We hear of people diagnosed with TSH of 600 or 800 (not often, but we DO hear it).  Your TSH doesn't want to be ignored, but I don't think you have to worry about myxedema coma in the next two weeks.

[marymary820]

it says free T4 and the range is (9.4 - 22.7)

[goolarra]

Your FT4 is in range, but just barely.  It's very close to the bottom, which indicates that you are hypo, but not dangerously so (don't worry about coma).  Do you suppose you could call your doctor's office and ask them to order FT3 so that you have it when you see your doctor again?  With your FT4 and TSH both looking very hypo, I would expect you to have symptoms (have you checked the list yet?).  It's very important to to know what your FT3 is doing as it might explain the discrepancy between your symptoms and your TSH/FT4 results.

Check the symptom list to see which ones you have, if any.

[marymary820]

well I looked at the symptoms checklist and the only thing I have is lightheadedness, feel dizzy occassionally and thats about it! The doctor was actually testing me for hyperthyroidism as i kept getting hot sweats, anxiety and palpatations which have now subsided, I had a baby 6 months ago by emergency c - section since then my body seems to have fallen apart!!!

[goolarra]

There are a couple of "temporary" forms of thyroiditis and one of them, "silent thyroiditis" is associated with post-partum.  You might do some research on that...it's characterized by an initial hyper phase, followed by a hypo phase (that might or might not require meds support temporarily).  I'd try to get FT3 to see if that sheds any light on what's going on.  Have you had a thyroid ultrasound?  Have you had any antibody testing?  What prompted you doctor to do the thyroid testing?

[marymary820]

Hiya I did some reading on that it is interesting and I hope my GP is aware of all of this! He initially did my thyroid function because he thought i might have been hyper, cause i kept getting anxiety attacks, palpatations, feeling like my throat was closing up the usual stuff, i would be sitting there fine and suddenly a wave of panick would come over me, i have also been suffering a really tight chest pre menstural so checked my cholesterol also as heart disease runs in my family. I have not had a thyroid ultrasound but my doctor is currently waiting for the antibody tests to come back will these  confirm the diagnosis?

[goolarra]

If the antibody tests come back positive, that will confirm that you have an autoimmune thyroid disease.  Since your TSH is high and FT4 low, it would mean that you have Hashimoto's thyroiditis, which is hypO, although an initial hyper phase can be involved as well as swings from hypo to hyper in the earlyl stages.

Your doctor should be testing both antibodies, TPOab and TGab.  Some of us with Hashi's just have either one or the other, and some have both.  If he's just tested TPOab, there is still a question.

[marymary820]

well i saw my doctor today, who still does not want to put me on meds as my Free T4 is 9.4 he says that is what he is looking at and that he is not concerned about my high TSH, its the Free T4 he is looking at. So I don't understand why everyone on here concentrates on their TSH all the time? He is sending me for a thyroid scan and is referring me to an endo, he wants me to have the scan before he puts me on meds, he says i will end up on levo at a very small dose but wants me to have the scan first! all very confusing!

[goolarra]

He's absolutely right to be concentrating on your FT4.  FT4 is MUCH more important than TSH.  "I" do not concentrate on TSH...my very first reply to you above on 3/22 said that TSH is not as important as FT4.

Why do we hear so much about TSH?  Because for years and years it has been taught in med schools as the "gold standard" for diagnosing and treating thyroid problems.  Most of us who have been on this forum for very long know what a poor tool TSH is and advocate for using FT3 and FT4 instead of TSH every single day.  Another reason you hear so much about TSH is that everyone knows their TSH (and usually no other lab results).  TSH is the first thing we hear about (check out your first comment on 3/22), and we are expected to rwact to it.  Most don't even know FT3 and FT4 exist.

Your doctor obviously thinks your FT4 is a concern, and he's right.  If he didn't, he wouldn't be pursuing it further.

Even though he has not put you on meds, he is doing the right things:  ordering a scan and referring you to an endo.  Is it a nuclear scan he's ordering?  If so, you cannot be on meds for several weeks before having that (people who are on meds have to stop them for about six weeks prior)...perhaps that's why he's delaying the meds???

[marymary820]

thank you again for replying to me! its is very kind of you to take the time. I know you told me FT4 and FT3 were of more importance, I meant when i read other peoples posts on here and looked on google its all about TSH, but once you said this to me I read up more on those other levels and its making sense to me now - at last!!!!!! heehee! is it the case where my TSH is high yes - so if they gave me meds based on that they would probably give me the wrong dose as in too much because my FT4 is only just out of range? I don't even know if i am making sense!!!

[marymary820]

p.s not entirely sure about the scan actually he didn't really go into details i should have asked....

[goolarra]

The TSH thing is confusing...sorry to rant on...it's just so frustrating at times trying to get people to realize how often it's totally unreliable.  There are any number of things besides thyroid hormone levels that can make TSH virtually useless...pituitary issues are one (that's my problem), and meds, especially meds with T3 in them is another.  Also, TSH is up and down, even intraday, so doctors who base treatment on it end up adjusting dosages often when they shouldn't.  Then the TSH swings the other way, they adjust again, and the whole thing might have been avoided if the more stable FT3 and FT4 had been tested.

But, yes, you understand the gist of it.  If they just look at TSH, they only see a very small piece of the puzzle, so they often prescribe inappropriate doses.

Keep us updated on what your find out...

[marymary820]

thank you, my doctor was quite frustrated with me when i kept mentioning TSH and begs me constantly to stop googling!! I did read about levothyroixine and couldn't understand why all these people that were talking about it were saying how awful they felt until i realised that most of them sounded hyper! I was wondering if I could ask you one more question, I am probably driving you crazy so sorry, but its nice to talk to someone who understands, I keep feeling fluey and because i have had a bad month of actually having the flu amongst other things - I don't know if this is a symptom of PMT to which I get really bad now or if this is how you feel with hypothyroidism, i dont' feel achey (achy) just generally not right - my doctor put it down to pmt but i am not so sure.

[goolarra]

The fluey feeling could very well be a hypo symptom...the problem is that that fluey feeling can be sooo many things, including the flu!  However, if it's lasted too long to be the flu, I wouldn't be a bit surprised with your numbers that it's hypo.

I share your doctor's frustration with TSH.  Wow, if he understands that TSH isn't all that important, you got really lucky in finding him.  So many of them still think that TSH is the be-all and end-all.  

Usually, the people you hear from most are the ones dissatisfied with what's going on.  So, we hear from the people on levo who should be on other meds or who's doctor just doesn't know enough to adjust their dose properly.  Lots of us do fine on it...me included.  We seldom "write in" when we think everything is fine!

Don't stop googling...informed patients are more "difficult" for doctors to deal with, but you just have to learn all you can and be your own advocate.  There are too many ill-informed doctors out there.  But it sounds like you go a good one!  Keep googling!

[marymary820]

sorry more questions for you - i really appreciate you taking the time to talk to me, it really helps speaking to someone who is going through it/been through ithow long have you had this for then? what were your original blood results?  what is classed as a really low T4? or severe hypothyroidism? this evening these terrible pains have started occuring in my legs to the point where my dad had to drive me back to my flat as could not drive is this another sign? everything seems to be happening in the last week or so and my next doctor appointment is not for another two weeks i might have to try and see him sooner, cause i think he could possibly have been wrong saying my symptoms were period related!

[goolarra]

I was diagnosed hypo in December of 2007.  I didn't get the Hashi's diagnosis until a year ago last January when I started seeing my current endo.  I had been hypo for at least a couple of years before the 2007 diagnosis (hindsight being 20/20!).

When I was first diagnosed, my TSH was 67.2...yikes!  I had to go look that up.  FT4 was 0.4 (0.6-2.0) and FT3 was 1.7 (1.8-4.2).  So, I was below range on both FT3/4.  Our ranges are different from yours.  Your FT4 is too low, but it's still in range, so you're not so bad off!  Any FT4 below range is pretty low, but I've seen them extremely low (less than mine was).

You might try taking magnesium for the leg pain.  Also, make sure you drink plenty of water.  Magnesium will also help with constipation if that's an issue.

If you can get in to see your doctor sooner, that would be great, but don't panic...your numbers aren't all that bad, and you've caught this early, so you won't be having symptoms for a couple of years like I did.

[marymary820]

wow, i can't believe you had it for two years you must have been feeling ill, how come it took them so long to diagnose you? i don't understand why these symptoms have suddenly hit me i have no get up and go, feel so weak and crappy but there are so many viruses going around at the moment you never know what it is, i just know i can't be bothered to do anything!! My doctor won't test T3 cause he said what is the point when the T4 converts to T3 so i didn't really have an answer to that!

[goolarra]

My main complaint during that time was my lower back, which at times I didn't think was going to hold me up any longer.  I went to PCP, specialists, chiropractors, physical therapists, "pain management specialists" (took me off my Celebrex due to liver function test and refused to give me anything else!!!), etc.  NO ONE ever suggested thyroid.  My health insurance isn't the greatest, since we're both self-employed and have to pay every nickel ourselves, so I couldn't go running to the doctor every week.  Finally, my husband was watching Oprah, who was doing a segment on thyroid, and he diagnosed me!  He was right, and he's a cabinetmaker!!!

Sometimes thyroid disease moves like the turtle and sometimes like the hare.  Also, stress and other illnesses can speed the progress of the disease up.  Your recent  flu might just have nudged you over the edge to where you're now getting hypo symptoms.  Also, some of the symptoms are pretty subtle, and you don't think about them because they sneak up on you.  Then, you see the lab numbers and start paying a lot more attention.

Well, yes, T4 is SUPPOSED to convert to T3, and in an ideal world you'd only have to test FT4 to know what was going on.  However, we being humans, and not ideals, many people have conversion problems (their bodies don't convert the T4 to T3 or do it way too slowly).  Their FT4 levels can be "perfect", and they still feel hypo because their FT3 is too low.  T3 is the most biologically active of the thyroid hormones.  T4 cannot be used by your body until it is converted to T3.  Why just test FT4 and "assume" the conversion is fine?  FT3 is a cheap test and really fills out the thyroid picture.  It's important to start testing FT3 as soon as possible to establish a personal history.  If there are problems down the road, you can refer to previous levels and sort out what's going on.

Lots of doctors object to FT3...it's just plain stupid.  Testing FT4 and ignoring FT3 is a little like checking the oil in your car by counting the cans of oil you have in storage in the trunk.  They're not doing your engine any good.  Why not look at the oil level in the crankcase, which is the only oil your car has available to it?  Throw that analogy at him!!!  LOL  

[CarolG52]

Excellent analogy!

I've been battling Hashi myself for several years.  Finally took over my care with my PCP & Endo and luckily they have allowed it with their guidance.  I was getting no where with what they were trying.
I feel like I'm now starting to get my old life back.
My last tests done in Oct 09 shows the following:
FT3 - 5.3   (2.3 -4.2)
FT4 - 0.73  (0.6 - 1.6)
TSH 3.14   (0.34 - 4.82)

do you think I'm not converting well enough?

[marymary820]

that was wonderful i think i will have to learn that one off by heart!!! i am going to phone them in the morning and hopefully get an appointment, i have suffered bad back pain but again i took that as my period being due, my poor mum has been over all day helping me with the baby and house work! my dad found it highly amusing i talk to someone on a thyroid community! i have been really stressed as going through a divorce so i am wondering if that is what has bought it on! thank goodness for you husband and oprah!!

[goolarra]

With those labs, there is definitely no slow conversion issue.  The FT3, at 5.3 (2.3-4.2), is correct?

Are you on meds with T3 in them?  Have you changed meds at all since those labs?

Do you have either hypo or hyper symptoms?

[goolarra]

My endo thinks that stress is THE biggest factor in triggering autoimmune disease...I know your antibody tests haven't come back yet, but I'm betting you have Hashi's.

[CarolG52]

Yes- 5.3 is my FT3
I take Armour 1 grain 4 X week & 1.5 grains 3 X week
He upped my dose of 1.5 grains from 2 x week to 3 x week.
Mainly Hypo, although I'm now so much better than I was 2 years ago.
I'm scheduled to do labs again this week, I don't normally wait this long but we moved out of Sacramento for about 6months and are now back, so I hooked back up with my PCP & endo.
I wasn't sure if I should cut back to 1.5 2 Xweek.  I did notice slight palpatations a couple times in the last couple week or so but nothing major.
I have gone through the whole ga,et of hypo drugs trying to find the one that would work best for me.  Armour so far as beat, synthroid alone at different doses, synthrtoid & cytomel at dif doses.
I have also completed stopped intake of any form of sugar and honey.  I had a ELIZA test(blood) done and found out that my body was having ahigh reaction to any form of sugar & honey to name some.  So, I was thinking now that I have been off them for 6 months, maybe my body is ina healthy state and maybe the dose is a bit too high?  all speculation on my part and will need to review with my endo.

[goolarra]

Your FT3 is over the top...I'm really surprised that you're not feeling hyper from that.  However, your FT4 is very low in the range...way down in the bottom quarter.  I'd suggest cutting back on the Armour a little bit and adding some T4 meds to the mix.  That would give you more FT4 for conversion between doses of Armour with its T3  .It would also help to balance your FT3/FT4. Since you're on meds with T3 in them, it's hard to say how you'd convert on your own.

I'm also surprised that your TSH is as high as it is with FT3 so high. It will be interesting to see what your current labs look like.  It looks almost like something else might be going on here.  Ever been tested for RT3?  

[marymary820]

well i went to my doctor he was going to call me latest bloods Free T4 7.4!! tsh 30 so he has but me on 25 mcg of levothyroixine, no wonder i felt so rough! i don't understand how my T4 dropped so quickly in two weeks i hope i am on a high enough dose!

[goolarra]

It's always best to start at a low dose and build up...it can make the transition onto meds so much easier.  Just be sure to have bloodwork again in four to five weeks and have him adjust your dose again.  

Thyroid dysfunction or disease seldom works in a nice, smooth pattern.  It sounds like your thyroid just took a major step down.  

I'm glad he put you on meds.  It may take an increase before you see complete improvement.  Have your antibodies tests come back yet?

[marymary820]

no he is still waiting for the results, just stumbled across some website about levothyroxine with all these people saying how ill they feel on it - but surely that is due to the fact their condition is not controlled properly? he said i would have a blood test in 8 weeks?!!

[goolarra]

You hit the nail on the head...if your condition is controlled properly (for YOU individually) with whichever meds work best for you, then you should not feel ill.  I take just levo, as many of us on here do, and I feel just fine on it.  Many doctors don't know how to adjust properly or refuse to prescribe meds with T3 in them for those that need them, and that's where the problems come in.  We don't hear from people who are pleased with their treatment.  Also, there are many people out there who insist that there is only ONE proper treatment for hypo, and that's what EVERYONE should be taking.  We're all different, different things work best for each of us, they're full of sh/t no matter which treatment they're pushing.

Eight weeks is a bit long, I think, at this stage.  If you're feeling better after four weeks and don't mind waiting the extra four, it's not a problem.  However, if you don't see some improvement at the 4-5 week mark, I'd insist on labs sooner.  You're at the stage (very beginning) where you don't know if you'll need an increase or if the thyroid might recover somewhat after having a "rest" (if it's not autoimmune).  I think it's important to stay on top of it until you get on a stable dose and determine what's going on.  My endo was doing four-week labs when he was increasing my dose.  Judge by how you feel in a month or so...

[marymary820]

does everyone end up with their doses being increased? what these people experience then is due to their thyroid problem not by the medication itself? how do u know if you T3 meds when my doc won't test for it?

[goolarra]

Just about everyone does...this is all a very trial-and-error process.  We all react so differently to different levels of hormones in our blood that you have to start out low and build slowly.  

99 times out of a hundred, it's their thyroid problem not being properly controlled that's the problem. There are some issues with allergies to fillers in the meds, etc., but by-and-large, the meds (which are really not meds, but replacement for the hormones your thyroid would make if it could) are well-tolerated.

The easiest way to know if you need T3 is to test for it everytime, right from the beginning.  It may not be all that useful at first since they will try to regulate you on T4-only meds.  If you have FT3/4 levels going back, you can see how FT3 changed relative to FT4.  Does FT4 keep going up with increases in meds?  Does FT3 go up along with it like it should?  If id doesn't go up like it should, and you still have hypo symptoms, then conversion issues are to be suspected.  That's probably a while down the road for you.  And it may never be an issue...

You can also usually tell by symptoms.  If FT4 is at a good level, and symptoms remain, you probably have a conversion problem.  But, right now, you just have to worry about getting your FT4 up.

[marymary820]

sorry one more question! if my levo dose is to low with my T4 levels continue to drop? i still don't feel well...

[goolarra]

That's not an easy question to answer.  If your thyroid function continues to degenerate and your dose is too low, then your FT4 might continue to drop.  If your thyroid function isn't changing much, then the addition of 25 mcg will increase your FT4.  

However, bear in mind that it takes thyroxine 4-6 weeks to build up in your system to stable levels.  Don't expect to feel a lot better for a few weeks.  It's not a day-to-day thing, but keeping levels constant over time.  Also, you might need an increase (or two) before your symptoms completely go away. You have to give it four weeks.  If you still don't feel well then, it's time to ask your doctor for more bloodwork and re-evaluation of meds.  Treating this disease is slow, slow, slow.  We always say:  patience, patience, and when that fails, more patience...

[marymary820]

Hey
feeling so much better on levothyroxine!!! will be having a blood test soon but have so much more energy!!! its great but i am sure they will prob still need to put me up to 50mcg

[goolarra]

So, patience, Grasshopper, paid off!  I hope you're not too young to understand the Grasshopper reference.  So glad to hear you're feeling better...still, take it slow...you might want to hit 37.5 mcg for a little while before jumping right to 50.  Depends on labs.

[marymary820]

ok, sorry to bother you AGAIN!  i think i spoke to soon about feeling better, suddenly started feeling really tired and nausea but my bloods ar e so much better. My T4 is 13 range is 9.4-22 and my TSH is 11 which is still high but better than 45! range is 0.5-5 my doctor is on holiday but the one that called me wanted to put me up to 50mcg but i was not sure about this and said would rather wait for my regular doctor to come back?

[goolarra]

Well, your labs still need some work, and you still have some symptoms.  I wouldn't have a problem increasing as long as you're tolerating your 25 mcg well.  You might consider taking 37.5 mcg for a couple of weeks to see how you do with that, then increasing to 50 if 37.5 goes well.  In order to do the 37.5, you'll either have to have 25s to break in half and take 1 1/2-25s or get some 75s and take a half.  I think the doctor who called you has the right idea.

[marymary820]

thanks for replying, you are very helpful! when i first went on levo my chest went very tight, i had insomnia and palpations but that only lasted about 4 or 5 days but i was very hypo so don't know if the thyroxine was a bit of a shock to the system?! i will phone the doctors tomorrow then to see someone as can't stand feeling like this for another 3 days! do u feel normal now? i am worried i will never feel like myself again!

[goolarra]

Yes, the thyroxine can be a shock to your system.  You're body has to get used to having those hormones available again.

I do feel well now.  I haven't had any hypo symptoms in close to two years.  I briefly had some hyper symptoms a little over a year ago when I was overmedicated.  You will feel better, too.  This just takes such patience...it's really an art form getting your meds right.  You have to increase fast enough to keep symptoms at bay, but not so fast that your body doesn't have time to adjust to each higher level of hormones.  Just keep at it slow and steady...you'll get there.  You felt good for a while on 25 mcg, then you backslid a little...you'll probably find that that happens after every increase on your way to the proper dose, BUT the good days will increase and start outnumbering the bad days each time.  Do you keep a journal of meds and symptoms?  Sometimes the changes are subtle unless you can go back and read what was happening a while back.  Good luck with your increase.  

[marymary820]

hey
long time!! a question for you please, my consultant is on holiday and i think i have now gone hyper my T4 is 23 top of the range is 22 and my tsh is 0.2. range is 0.5 to something, does that mean i am now hyper? i don't know what to do about my meds, i have started getting anxiety attacks aswell :(

[goolarra]

Your FT4 is high, and TSH a tad low, but not alarming.  Whether or not you are hyper depends on your symptoms.  Anxiety is a hyper symptom.  Do you have any other hyper symptoms?  Diarrhea, rapid heart rate, high BP, insomnia, etc?  

Do you know your FT3?

How long ago was your most recent meds adjustment?  Did you feel well on it for a while?

[marymary820]

hey thanks so much for replying, they won't test my ft3. My meds were re adjusted 8 weeks ago to 100mcg its in the last two weeks i have started to feel really anxious. My doctor has told me to put it down to 50mcg and wait to see what my consultant says when he gets back is that right to do so? i don't really trust my doctor he is not that great at thyroid stuff! i have had no other hyper symptoms.

[goolarra]

So, you've been on 100 mcg for eight weeks.  After six of those weeks, FT4 should have leveled off to stable levels.  However, often what happens is that FT4 levels, then FT3 continues to rise for sometime afterward as conversion ramps back up.  So, my guess (and it's just that - a guess - without seeing FT3) is that's what's happening to you.

A decrease is probably in order (at least to see if your anxiety is relieved).  However, a drop to 50 mcg from 100 mcg is WAY too much.  That kind of change will have you flipping right back over to hypO most likely.  Do you think your doctor might consider dropping your dose just a little...maybe to 88 mcg per day, or even alternating 100/88?  Meds changes have to be made very slowly, or you will swing back and forth, which is no fun.  

[stella5349]

anxiety is not just a hyper symptom. Its in relation to the FT3 balance - either too high or too low and linked to both hypo and hyper symptoms.

If your doctor is not testing your FT3 and has no idea where you really are at then its not an educated dosage change and you could be headed into worse symptoms if you are not monitored correctly.

Both hypo and hyper are linked to anxiety and heart palps all due to the FT3 testing...

If you are approaching your doctor with the right resources on getting the FT3 test - with the FT4 and TSH - then s/he has no real say on refusing your request to get it done.

Another thing here could be a conversion issue based off the T4. It sounds like you have been up and down in dosages for some time and still.... your situation has not improved as you would like it. Holding back conversion and even storing T3 hormone can happen at any time of thyroid treatment if the other glands and organs are lacking somewhere. To test for that the ratios of FT3 and FT4 must be looked at with past tests and see if anything is consistant between those too along with maybe requesting an RT3 blood lab and see where you are at there.

Some liver testing too could help look at a lack of conversion.

[marymary820]

hey thanks to both of you for your help so far, i phoned to speak to my consultant today and his secretary is getting him to call but that could be forever. So i phoned my doctor and he was useless and said go down to 25mcg!!!!!!! what!!!!!! so i have just put myself on 75mcg until the consultant gets in touch, i think 50mcg was to a low drop as feeling soooooooo tired.... do u think this will be okay for now? i don't want my levels to drop quickly, does the ft4 just stabalise then and not keep going up? i don't really understand it in as much detail as you!

[stella5349]

I wish I had a concrete answer for you but really / medically - you need to test after changes to your meds to really see where things had moved to.

I think you need to remain in the consistant dose your doctor designed for your start up and steps your in.. regularly test at the times this doctor schedules them and check those labs to see if you see improvement or not with symptoms changing things up and down./

[Nycharliegirl]

I'm new to this having only found out a month ago I have a TSH level of 22.  I only found out because I came down with Vertigo and the doctor ran blood tests to see what was causing it.  While there I mentioned over the past three or four years I have put on about 50 pounds even though I have been an avid gym person I have a fairly healthy diet.  I have felt exhausted even when I first wake up.  I thought it was all due to getting older as I'm in my forties now.  I feel betrayed by my body angry about all the work I've done to stay fit only to have my body fighting me at every turn.  At least now I know I'm not crazy and it's not because I'm old.  It has really wreaked havoc with my mind and my sense of self.  In all this my question is how long before the meds start to really take effect?  I do feel as if I have more energy in the morning. I have not lost any weight I still ache feel forgetful dry skin but my hair is great my sex drive seems just ok. How long before I have more energy throughout the entire day and will my weight really get to where I used to be if I keep exercising?

[Barb135]

Since this is a very old thread, it might be better if you start your own post.  Have you had any tests done besides TSH, like Free T3 and Free T4?  Antibody tests, etc?

When posting lab results, please make sure you also post the reference ranges used by the lab as they vary from lab to lab, so must come from your own report.

How long ago were you diagnosed with hypothyroidism?  What med/dosage are you on?  

Sorry to ask so many questions, but without certain information, it's really difficult to answer your questions.

The time frame for the whole process of feeling better varies from person to person and depends on your particular issues.

[Nycharliegirl]

Thank you for replying to my question I didn't think to start my own post and never even been on a site like this before.  

As for the questions I was diagnosed one month ago.  I'm on Synthroid 75 MCG.  I have not had any other test done.  
I was at the doctor for vertigo and had no idea what was coming.  

Since being told I have this I have been trying to educate myself before going back to the doctor which will be next week.  I want to know what are the smart questions to ask.  I have not even seen any lab reports.

I feel like a child who has been dependent on her parents and now is on here own.
Any help will be greatly appreciated.

[Angelbabe1uk]

I was diagnosed with a problem with my thyroid 3 years ago now
In the 1st fasting test it was 5.0 so dr's did a normal blood test 6 weeks later which was normal
The next year another fasting test reviled it was up again at 6.0 so again drs did a normal test 6 weeks later reviling it was back down
This year i had another fasting test and it was at 7.0 then again 6 weeks later its back down
I am a borderline diabetic (not on any meds)
I have asthma/bladder & bowel problems/high blood pressure (controlled by meds) tinnitus in right ear/arthritis in right shoulder/elbow/wrist/arthritis in left wrist/coxit & hips and now very bad in my left knee,
I suffer vertigo attacks just by turning my head and suffer anytime even when walking outside or glancing down to keyboard to type,
Im getting very forgetful & my hair is receding backwards from my forehead
My dr refuses to put me on anything for my thyroid all he does it rechecks with a normal not a fasting bloods 6 weeks later
Why would a fasting bloods show it up but a normal bloods does not?

[goolarra]

You'll probably get a lot more feedback if you go to the top of the page and click on the green "Post a Question" button.  That way, you'll start your own thread, which usually gets better response than tagging onto an old one like this.

Thyroid blood tests do not require fasting.  However, TSH is very volatile and can even be affected by the time of day the blood was drawn.  Were the draws at different times of day when you were fasting versus when you weren't???  That could account for the difference.

If you want a much more accurate profile of your thyroid function, ask your doctor to test free T3 and free T4 (NOT total T3 and total T4).  These are the actual thyroid hormones and indicate what your thyroid is actually doing.

[carol1287]

Do you have any stomach issues. If you have Gerd. Or any Stomach Acid problems It is harder to asorb the thyroid Medications I have Esophical problems and Acid Reflex, Thats my problem My THS was 29 this time. I take my Thyroid Medicine at 5;00PM at night. 5 hours after I eat. With nothing to eat before I take it, Because I took it for one year in the morning before I ate' And my THS was still high 18 I have a hard time tolerating the Thyroid Medicines It causes me to have  chest pains. which is a side effect of the medications. I just went from Levoxyl to lavothyroid. Which is a name brand from forest labs. So now it is all waked out. But I couldn't tolerate levoxyls higher dose. I don't know if I will be able to handle a higher dose of Lavothyroid either.  I havent tried Synthroid yet.
Carol.

[goolarra]

This is a very old thread, and many of the people who commented may not be on the forum any longer.  You'd get more attention to your individual concerns if you went to the top of the page and hit the "Post a Question" button and started your own thread.

You can re-post waht you've already told us and answer the following questions as well:

Is your doctor testing anything but TSH?  Does he test FREE T3 and FREE T4?  

What was your dose of Levoxyl before you switched?  Was it the brand name Levoxyl or generic levothyroxine?  I've never heard lf "lavothroid" before.  Could you please check the name again?

Thanks.