Question? regarding levels when first diagnosed with Hypothyroidism
I have a general question for everyone who is Hypothyroid? At what levels...TPO AB, T4, T3 and TSH were you diagnosed as Hypothyroid and were put on hormone therapy? There seems to be such a broad spectrum of qualifying ranges that varies from Physician to Physician. I would truly appreciate anyone who could take a minute and write me back.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Hi Vann, welcome! The problem getting diagnosed is most md's only look at the "tsh" level and most thyroid symptoms "mimic" so many disorders. For me, my tsh was rarely tested and looking back at the past few yrs when it was tested it ran in the 3's. I was suffering horrid symptoms and not one dr suggested thyroid. The other tests, aren't usually run until they see a tsh abnormalty. This past Jan. I insisted on a complete lab workup from a shrink no less! refused psyche meds, I knew and know most "symptoms" are not in our heads! but will end up that way left untreated and giving "psyche" meds in themselves create a host of more dangerous issues. When I got my labs back in Jan. my tsh was 7.66, which finally got me noticed. My thyroid is totally destroyed by Hashimoto's disease. Thus, having had this for many many yrs untreated. I went to top notch drs and still never diagnosed and probably if not for my insistance would still be suffering. I'm very unhappy with the medical field and will continue my research for better health. I've rid all their happy pills, and am doing much better, with thyroid meds and dhea, its been a long road! I guess the best we can do is use the dr's for their ability to order testings- we must be our own advocates. If your levels are off find a doctor to treat you, good luck!!
__________________
Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Quote:
Originally Posted by kindspirit
Hi Vann, welcome! The problem getting diagnosed is most md's only look at the "tsh" level and most thyroid symptoms "mimic" so many disorders. For me, my tsh was rarely tested and looking back at the past few yrs when it was tested it ran in the 3's. I was suffering horrid symptoms and not one dr suggested thyroid. The other tests, aren't usually run until they see a tsh abnormalty. This past Jan. I insisted on a complete lab workup from a shrink no less! refused psyche meds, I knew and know most "symptoms" are not in our heads! but will end up that way left untreated and giving "psyche" meds in themselves create a host of more dangerous issues. When I got my labs back in Jan. my tsh was 7.66, which finally got me noticed. My thyroid is totally destroyed by Hashimoto's disease. Thus, having had this for many many yrs untreated. I went to top notch drs and still never diagnosed and probably if not for my insistance would still be suffering. I'm very unhappy with the medical field and will continue my research for better health. I've rid all their happy pills, and am doing much better, with thyroid meds and dhea, its been a long road! I guess the best we can do is use the dr's for their ability to order testings- we must be our own advocates. If your levels are off find a doctor to treat you, good luck!!
Hi, I'm a first time poster, so please forgive me if I'm doing something wrong. It's taken a couple of hours before I figured this out.
I too am very fed up with the medical profession.
I've been taking Synthroid 0.1mg for quite a few years, when I went overactive this summer. My doctor took me down very slowly to 0.050mg when I then went overactive.
He then wanted me to take 0.050mg for four days and 0.075mg the other three days in the week.
I looked at my file when he was out of the room and my TSH level was 7.12 and I can't see how we will come up with a proper dosage like this. I've been feeling poorly so I tooks .075mg for five days first and then did as he requested. He wanted blood test in two months.
I went back in and told him I wanted to be tested and he said: "Oh, you want to run on the high side, then take .075mg and don't go for testing until 2 more weeks."
I'm wondering how often one should be tested when the numbers aren't right?
I'm so happy to find this board as I have nothing to compare with. Thank you in advance for reading.
Bree
Last edited by Bree 1905; 12-01-2008 at 12:47 PM.
Reason: spelling
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Thank you, did they do a TPO AB on you? if so, what was the level? I'm trying to figure this all out. How does the elevated Antibodies play into hypothyroidism? I know it is autoimmune, I know it is seemingly destroying my thyroid...but does the hormone replacement therapy halt that destruction? My TPO AB is 3021 which my Doctor seems to think is irrelevant.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Vann, your anti-bodies are very high! mine were 1300. My ultrasound looks like a white patch, my thyroid is all eaten up! I'm 52, not sure what the heck I can do to stop the progression?? but, I do take selenium and now on dhea, which is a great autoimmune proctector. I've got other issues going on, my kidney showed opacitiy and kinda worried...also have hurthle cells from my thyroid biopsy, which is of great concern. So, at this point, I'm taking my Synthroid, added cytomel- 10, and dhea feeling a bit better! I think its the dhea,as I was only 30 level on that one. Besides the skin disease I have, porokeratosis, I look pretty good for 52~!sleep is a constant battle...I've had 2 back surgeries and even with the pain, no meds! so, its possible to regain our lives back! My regime, no artificial meds! I take magnesium, vit., vit e, and green tea and no way will I ever take another anti d,,benzo type drug again! If I could sleep a full night that would make my day!
__________________
Hashi's / Hypo Jan 2008
C 5-6-7 fusion
L-5 s1, discectomy, ddd, o/a, scoliosis
Hysterectomy
Re: Question? regarding levels when first diagnosed with Hypothyroidism
I guess that is what is worrying me, why are my antibodies so high? My TSH is 2.27 at the time as my antibodies were drawn. I see that 2.27 is high by some standards and normal by others but the antibodies seem high on every range available. My Doctor continues to believe that they are not an issue as far as my thyroid is concerned. Just an evaluation tool..he claims. The high TPO AB merely means I have a issue going on with my thyroid but does not indicate a need for hormones. My confusion is 'why'? I feel extremely hypo...could that just be from the high TPO AB? I also wonder how long it takes for thyroid hormones to be removed from ones body? My Doctor wants me off thyroid hormones for 6 weeks then to have levels drawn...will my thyroid crash? or increase the production of hormones? or go back to the levels before the Synthroid? How come it takes 6 weeks? It is all so confusing...thanks to anyone for your input
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Very high antibodies mean that your Hashi's is in an active state. I was also told that high antibodies don't necessarily mean anything as far as my thyroid function is concerned - well he was obviously wrong as kept on going even more HypoT.
So you have been on thyroid meds already? Was that TSH taken when on medication? - if that is the case your medication has been too low and it's no wonder if you're feeling HypoT. If you are taken off meds for 6 weeks you'll surely know how your thyroid works (or doesn't more likely) and you'll probably feel more HypoT after a while without meds - your thyroid does try to work but probably it won't be enough - the situation can be worse than when you were originally put on meds. Good thing is if your levels then show HypoT you should be put back on meds ASAP.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
High TPOAb and TGAb are the positive indicators for Hashimoto's thyroidits aka Autoimmune thyroiditis. This is a REAL thyroid issue and should be treated as such. It will not magically go away and as time goes by you will spiral more hypoT as mor of your thyroid is obliterated by your own immune systems antibodies,
Other than identifying Hashimoto's the antibody level can tell you HOW active Hashimoto's is and how aggressive your immune system is in pursuing the destruction of your thyroid. In your case your immune system is serious about obliterating your thyroid AS quickly as possible. TPOAb and TGAb also are know to interfere in TSH production. As a result your TSH may be artificiallys suppressed. You must get your FT3 and FT4 level and use them as the main guide in thyroid health.
Has your MD tested your Fts? If not I suspect you are dealing with an old school TSH watcher and need to do some MD shopping. IF YOUR FT3 AND FT4 levels are suboptimal/optimal on your thyroid meds.. DO NOT GO OFF OF THEM. Hashimoto's is best treated by supplementing thyroid demand with thyroid medication and taking Selenium. You also have to make sure you are optimal in Ferritin, B12, vit D levels as well. This MD would have gotten my MDum boot.
MG
OH the 6 weeks.. it doesn't take six weeks for your Ft3 and Ft4 levels to hit equilibrium, it takes only two weeks. It takes 6-8 weeks for your TSH to catch up with a medication change. Your body will determine if a dose change causes it to be hypothyroid/hyperthyroid in approximately 4 weeks. The MD is using the 6 weeks because he is watching your TSH.
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
No, I was not on any meds when the blood was drawn. I have decided to finish up the Synthroid that I have and then wait the 6 weeks to have another test done. It isn't like I have many options at this point anyway. He will not give me the script for the Synthroid until he sees higher levels in my TSH. I just hate the idea of sleeping my Holiday season away gaining 50 pounds and being so mentally foggy. It will be 'interesting' to see where my levels are after the 6 weeks.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Quote:
Originally Posted by mkgbrook
High TPOAb and TGAb are the positive indicators for Hashimoto's thyroidits aka Autoimmune thyroiditis. This is a REAL thyroid issue and should be treated as such. It will not magically go away and as time goes by you will spiral more hypoT as mor of your thyroid is obliterated by your own immune systems antibodies,
Other than identifying Hashimoto's the antibody level can tell you HOW active Hashimoto's is and how aggressive your immune system is in pursuing the destruction of your thyroid. In your case your immune system is serious about obliterating your thyroid AS quickly as possible. TPOAb and TGAb also are know to interfere in TSH production. As a result your TSH may be artificiallys suppressed. You must get your FT3 and FT4 level and use them as the main guide in thyroid health.
Has your MD tested your Fts? If not I suspect you are dealing with an old school TSH watcher and need to do some MD shopping. IF YOUR FT3 AND FT4 levels are suboptimal/optimal on your thyroid meds.. DO NOT GO OFF OF THEM. Hashimoto's is best treated by supplementing thyroid demand with thyroid medication and taking Selenium. You also have to make sure you are optimal in Ferritin, B12, vit D levels as well. This MD would have gotten my MDum boot.
MG
OH the 6 weeks.. it doesn't take six weeks for your Ft3 and Ft4 levels to hit equilibrium, it takes only two weeks. It takes 6-8 weeks for your TSH to catch up with a medication change. Your body will determine if a dose change causes it to be hypothyroid/hyperthyroid in approximately 4 weeks. The MD is using the 6 weeks because he is watching your TSH.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
My Doctor just called and 'claims' my lab values are 'normal" at 3.74! She said she will not give me my prescription until it is over 4.0 and insists I do nothing and re-test in 8 more weeks to see if it increases. I mentioned how hypo I feel and she insisted the side effects of taking medication at 3.74 would be far worse than how I feel at the moment. Frustrated!! I would appreciate any input that may help 'enlighten' my Physician.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Your TSH could well be over 4 tomorrow morning. There is literally no difference between 3.74 and 4. Find a better doctor! That one is a thyroid quack.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
I wonder when your TSH is it's highest? I certainly do not want to falsify my lab values but it is frustrating for my Doctor to sanction a level of 4.0 to qualify for Thyroid medication. I can't re-test for 8 more weeks ..and at the rate I'm going it will probably be 4.0 by then anyway. I feel so very hypo I can only assume my TSH will increase. It was 2.27 in May (6 months ago) and now 3.74. It would appear something is going on. It was interesting, my Potassium was slightly decreased (3.2) and that she made a big deal out of I wish my thyroid could be fixed by simply eating a banana!
Re: Question? regarding levels when first diagnosed with Hypothyroidism
TSH ebbs and flows on a 24-hour basis. The pituitary starts secreting it in pulses around 9 p.m. and continues throughout the night. The level will be highest just before dawn and starts dropping off during the rest of the day from there, until the cycle begins again at bedtime. The level can vary as much as 3 full points during that time (although, it won't be that dramatic a difference for [i]every[/]one). That's why I said there is no difference between 3.74 and 4. If you can manage to have your blood drawn as early in the a.m. as you can, TSH will be almost at its peak. That could be to your advantage in convincing an MD to treat.
To answer your original question, I was diagnosed at 4.83, and my TPO antibodies were greater than 70. That's how the lab reports it; just "less than 70" or "greater than 70". They count to 70 and quit. That's high enough to be considered positive, and there isn't much benefit to knowing an exact count. The MD who diagnosed me treats when antibodies are present, no matter where TSH is. She says the ABs are proof that the gland is doomed to complete failure and that treating sooner than later can prevent goiter formation and will alleviate symptoms.
ETA... It is known that antibodies can actually suppress TSH. That's why you can have low thyroid hormone levels and the gamut of symptoms that low T4/T3 cause without having sky-high TSH. If a really stupid MD insists on waiting until TSH soars, you may have to suffer for about a century until the gland dies completely and the antibodies abate.
I still say your MD is a thyroid idiot.
Last edited by midwest1; 01-05-2009 at 09:17 PM.
Reason: Additional info
Re: Question? regarding levels when first diagnosed with Hypothyroidism
I support Midwest in her opinion on your MD.
NORMAL TSH range according to the American Association of Clinical Endocrinologist was changes to 0.3-3.0 in 2002. This was refined in 2006 to 0,3-2,5 being NORMAL. If a patient has HASHIMOTO"S the A A C E recommends treatment at a TSH of 2 or higher. You also have to take symptoms into account.
YOU are hypothyroid and you need an MD willing to recognize the latest guidelines and treat you accordingly. You need thyroid supplementation. See if an insurance patient advocate can help you... or start MD shopping.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
I also agree that you should go shopping for a new MD. Mine screwed me up big time by telling me my 5.46 TSH was in the normal range, knowing that I have a personal and family history of hypoT!!!! If she had put me on meds then, I really believe it could have prevented the past few months of hell I have been thru.
It is ridiculously stupid to say, well, even though you feel bad, I won't prescribe meds until your TSH climbs 0.24 points. Come back in 8 weeks and we'll see if you're worse.
Re: Question? regarding levels when first diagnosed with Hypothyroidism
Actually, from what I am getting out of the relationship between my Primary (she)and my Endo (he), it is the 'Endo' more than the Primary. The Endo seems very pompous, indimidating my Primary into going along with whatever he has set as a 'protocol' for Hypothyroid patients. I had not seen this side of her before, in the past she has always been aggressive in treating me. Like with the slightly decreased potassium. It would appear that once she brought him on as my "Endo"...she steps back from that issue completely. 'I' had to request additional testing, to 'him' It was a closed case. It was: "do not take medication!"..:you are fine now"..period! My lab, for what ever reason, does count TPO Ab..mine was 3021..obvious (slightly elevated. So for now, I will bide my time for 8 more weeks...then go first thing in the a.m to have my blood drawn. The funny thing is my last blood was drawn late in the afternoon, who knew I might have avoided all of this, just by picking an earlier time to go! I read an article about the 'little paper patient'..the type Doctors fear most. Someone very prepared for a Doctors appointment, armed with information to "enlighten" the Endocrinologist. I have decided, should my TSH rise above 4.0, that will be me! Complete with the new guidelines of lab values 0.3 to 3.0. Because of his "Holier than thou" attitude, and lack of meeting his "protocol"..I have let my Primary handle the lab requests but...this is my body and I am suffering!!! The minute my values exceed 4.0 it is "game on"
I have a "Surgeons" appointment next Monday to monitor the nodules in my thyroid and swollen Lymph nodes. I have one huge one that is wrapped around my carotid artery, 'declared" inoperable by 3 surgeons. The 'Surgeon' requested 2 second opinions! That is why this is soooo frustrating, this is my first time feeling like I am receiving less than 'adequate care". Thank you very mush for all of your input, I truly appreciate it!
- well he was obviously wrong as kept on going even more HypoT.
Doesn't she know that healthy people usually have their TSH under 2,5 
(guess not 
) Could you possibly get a second opinion?
