It seems getting treatment for my Hashimoto's won't be as easy as I hoped. I saw an ENT today who specializes in thyroid disorders, who confirmed I do have Hashimoto's... then proceeded to tell me that in cases like mine, doctors usually do nothing at all.
My TSH is in the 3-3.5 range, which most doctors seem to think is normal, although from what I've read, most likely it is at least borderline hypo. He didn't want to run any free thyroid tests, saying there is a disagreement among doctors if it's useful or not. So I just have my TSH, T3, T4 and antibody tests done.
He also stated that my thyroid ultrasound was normal, even though the radiologist who read it said the thyroid was enlarged. And a previous doctor told me it was enlarged and indicative of Hashimoto's (which makes sense, as my antibodies are high).
Anyway, I am wondering, what is the reasoning behind doctors not wanting to treat Hashimoto's unless a patient has a super high TSH? The studies I've read seem to indicate that low dose synthroid or armour is beneficial, and helps prevent it going full blown hypo. Why wait until it gets worse, suffer during the entire time, and end up having to take larger doses of medicine down the road?
And that's overlooking the fact that I do have a number of symptoms that match Hypothyroidism now... I just find it all bizarre.
some doctors are the biggest idiots. it sounds like your ENT falls into that category. he is recommending you have no treatment, is that correct?
btw, the powers-that-be having been tossing around the notion of making the TSH range smaller. i forget the exact figures. someone else here might know. often the TSH is not a good guide, especially on its own. he should be running your frees!
find yourself a good osteopath or GP or endo (the latter is harder to find in good condition). hashimoto's needs to be treated. you should have your frees run. you're having symptoms and they are only going to get worse without treatment.
RUN AWAY from that ENT!!!!
as to your question about why doctors dont treat hashi's unless the numbers are out of range. there is no good answer. there are good docs out there who treat the symptoms and use the numbers as a secondary source of reference. unfortunately most doctors, through ignorance it seems, dont know how to treat thyroid problems well.
He isn't going to treat me, but he did say I could see an endo instead. But the way he sounded, it was like he didn't think most endos would give me any medication either, until my thyroid got worse.
I know the TSH range supposedly was going to be lowered years ago. The American Association of Clinical Endocrinologists recommended using a TSH reference range of .3 to 3.0. Yet, lab reports, and it seems most doctors, simply choose to ignore this recommendation. Why? There must be some logical reason. Or maybe not...
I did have a D.O. as my primary care doctor (until she left the clinic and they won't tell me where she is now). But she'd just recommend I see a specialist anyway, probably. To be honest, it seems almost any primary care doctor I've seen in the past just gave referrals for anything above colds/flu/general maladies.
I have managed to get an appointment with a local endo (using the term 'local' loosely, as he's an hour away), 2 months from now. Other endos I've tried getting appointments with take from 4-6 months to get the initial visit. So I have to wait forever to just maybe get medication + proper tests done, and if he doesn't do them, repeat the process with another doc.
I find it really weird how doctors use different guidelines for thyroid treatment, ignore symptoms, or even choose to overlook bloodwork when it is abnormal (such as antibodies). They can't even decide which labs to run. I've been treated for other health problems in the past, and I never encountered such a lack of standards for any other disease. If someone has the symptoms of a disease, is diagnosed with a disease, then the doctor tells you that you can't get treatment until your disease gets worse... isn't that insane? Or am I missing something here?
I never encountered such a lack of standards for any other disease. If someone has the symptoms of a disease, is diagnosed with a disease, then the doctor tells you that you can't get treatment until your disease gets worse... isn't that insane? Or am I missing something here?
it IS insane.
you are not missing something here.
i've had my share of health problems before becoming hashi's and i never had such difficulties getting treatment for an ailment. its really ridiculous.
I have the same thing. i'm 18 i was diagnosed 3 years ago with hashi's and im still not being treated. you sort of just get used to having every single symptom of hypo and being ignored by you doctor. im going to see a new doctor soon hopefully she'll have some sympathy
I have the same problem still...6 years and 7 doctors later
initially I was diagnosed with subclinical hyperthyroidism, endo refused treatment,when I questioned her she said ...
'anti thyroid drugs have serious side effects and you could sue me if I did treat'......
subsequent docs have diagnosed me with hashimoto , hyperthyroidism, hypothyroidism, subclinical hypo , perfectly normal thyroid ...inspite of a multi nodular goitre
bottom line ...the idiots just dont know and unless you are obviously over the ranges... they are covering their own rear ends
"what is the reasoning behind doctors not wanting to treat Hashimoto's unless a patient has a super high TSH? The studies I've read seem to indicate that low dose synthroid or armour is beneficial, and helps prevent it going full blown hypo. Why wait until it gets worse, suffer during the entire time, and end up having to take larger doses of medicine down the road?
And that's overlooking the fact that I do have a number of symptoms that match Hypothyroidism now... I just find it all bizarre.
Ohh how so true is your thinking. All of us Hashi people are aflicted it seems with the same medically (inept) thinking of our doctors. I too have Hashi with very high anti-bodies + Hypo symptomsof all kinds, but I am marginally eythyroid - and began treatment in 20007 with Oroxine 100mcg. Felt OK after a few months, then Dr reduced Oroxine to 50mcg, and now I feel like a wrung out dish rag again.
Like so many posters on this Thyroid board, I'd also like to see a bit of a re-think about Thyroid disease from the medical community.
I wonder if other illnesses expereince the same amount of controversey over treatment versus non-treatment, and how disease is identitfied, categorised and denoted?
I just wonder if having MS, or Lupus carries the same amount of treatment controversey?
If anyone knows, please jump in.
After 6 years of suffering, fatigue, weight gain, changes in blood pressure, I had given up on going to any more Doctors for help. I knew something was wrong.
Then my nodules and goiter were found and suddenly everyone wanted to treat me......suddenly I DID have a thyroid problem, suddenly it was not in my head anymore...........suddenly I was being told this had been going on a long long time............OH REALLY?
Then after the Nodules were found I was went through the cancer scare and all the terrible stress that comes with that.......Now after 2 years of that I am being told I have Hashi's.........still have to worry about the possible cancer showing up but I have Hashi's.
So It has taken me 8 years to find out what is wrong with me........At least I am being treated so I am grateful for that.... I was Armour for the last 2 years and now on Thyrolar and Cytomel. Feeling 100% better but have my days.....
I took me several Doctors,an ENT, a Vascular Surgeon, 3 Endos to find the right Doctor for me. SO do not give up......
One thing I did find peculiar about my ENT was: when I asked him if I did have Hashimoto's, he first stated: 'Autoimmune Thyroiditis'. And he said it in such a way as if using a different name somehow minimized the problem. When I questioned him again, he said Thyroiditis and Hashimoto's are the same thing (which I knew already, but I found it strange he simply didn't say 'Yes' or 'No' to begin with). It felt like he was trying his best to downplay the whole thing, every symptom I had, testing, and the disease itself.
He then commented on my hoarse voice, yet couldn't find anything physically wrong with it. He then said a hoarse voice is a symptom of hypothyroidism, yet seemed to quickly forget this when I asked for medication.
I mentioned the fact it could take several months to get an appointment with another doctor, and he said since hypothyroidism isn't a severe sort of disease, there is no rush to get treatment anyway. So it's okay to suffer for several months (or longer) with a thyroid issue, simply because you won't die from it?
Perhaps the lack of standards, etc, simply has to do with money? Maybe there isn't enough to be made to run the proper studies, showing what medications work best, what doses, and who should be treated? I believe this is why Armour never ran any studies head-to-head against Synthroid. They can't make any money from it.
Although I do know of several smaller studies regarding Hashi and treatment... so who knows? Medical liability concerns or general idiocy could be another reason. I am really curious now, the more I read of problems other people have, as to why doctors behave like this. There is of course controversy in treatment of other diseases too, I imagine, but none that seem so widespread as thyroid problems. And I have never run across or read of other diseases where patients have all the symptoms, yet the doctor doesn't seem to care at all.
he said since hypothyroidism isn't a severe sort of disease, there is no rush to get treatment anyway. So it's okay to suffer for several months (or longer) with a thyroid issue, simply because you won't die from it?
i had a good, bitter laugh at that. that's a good one. what an idiot.
there is a theory that endocrinologists get into their field for the exciting illness of diabetes, and that the little, less exciting world of thyroid issues isn't enough to peak their interest, and/or the stuff just plain isn't taught well in the learning institutions.
i wish i had a good, solid answer for you as to why this nonsense is so pervasive. i'd love to know why myself.
Okay this is an excerpt from my week 2 thyroid care and concerns post. It has some basics on thyroid treatment issues. Hashimoto's is controversial.. but if you go through enough MDs you should be able to find one willing to try medication in order to shrink your goiter/nodules.. even if they do not want to treat subclinical hypothyroidism.
BASICS: What is normal TSH, FT3, and FT4 range versus optimal?
Optimal FT range is 50-80% of normal range. This statistic comes from the N A C B where they determined 85 – 90 % of non-dysfunctional thyroid MALES had TSH levels between 0.89-1.1. Women of child bearing years need to have FTs in the 60-80% range of normal. Women after menopause tend to need slightly lower Ft values in the 40-70% range. (This is just my MFM and 2 Obs knowledge on this.. trying to dig up a public access postable journal article on this information) Many MDs do not know how to determine where you are in the normal range. So here is the formula you need to know and come to love.
Given the following formate:
Free T or Total T value (lower limit - upper limit)
Your percentage is calculated as follows:
[Your FT value - lower limit]/[upper limit - lower limit]*100 = %
[0.85 - 0.8]/[1.8-0.8]*100 = 5%
Optimal care is when your TSH is around 1 on a T4 supplement alone with Ft's are in the 50-80% range of normal. T3 supplementation such as cytomel or Armour results in TSH suppression and as a result you must gauge thyroid supplementation on your actual T4 and T3 hormone levels and symptoms alone.
Here is a summary of the A A C E and N A C B statements on the latest normal TSH range.
November 2002: The National Academy of Clinical Biochemistry (NACB), part of the Academy of the American Association for Clinical Chemistry (AACC) was first to issue new laboratory medicine practice guidelines. This is their job so it is to be expected they alter the requirements MDs use for the diagnosis and monitoring of thyroid disease. The particular statements of interest in the 2002 guideline announcement are: "It is likely that the current upper limit of the population reference range is skewed by the inclusion of persons with occult thyroid dysfunction. . . . In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 mIU/L because >95% of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 mIU/L. . . . A serum TSH result between 0.5 and 2.0 mIU/L is generally considered the therapeutic target for a standard L-T4 replacement dose for primary hypothyroidism."
Non-US Mds may turn their nose up at this information.. but it is always worth a shot. This announcment and research was then picked up and reviewed by the A A C E. Based on the N A C B's findings, in January 2003, the American Association of Clinical Endocrinologists (A A C E) made the following important announcement that all the MDs should get.. but haven't yet: "Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. Now A A C E encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0. The A A C E believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."
You want to know the neat thing. In 2006 the 0.3-3.0 level change once more according to the N A C B and the A A C E. Normal TSH range for a patient with out Autoimmune thyroiditis is now recommended to be 0.30-2.5. In patients with documented Autoimmune thyroiditis.. the normal TSH range is 0.3-2.0. So if you have a TSH above 2.5 there should be a MD out there SOME where that has the guts to prescribe 50 mcgs of T4 minimum. You just need to find them. I would check the Armour physician finder database and look for one in your area that is in your network. Call and ask them about their practices policy in treatment and care for autoimmune thyroiditis given symptom onset. This will tell you whether or not you want to waste money on an appointment. I founf one SMALL group of MDs in my city (We have FOUR hospitals!! But only one forward thinking group willing to treat my Hashimoto's.) It took people here, my family and A LOT of research and slogging through medical journals to convince and brow beat my MDs into proper treatment. Only 2 were on my side from the get go. The others needed to be convinced. If they weren't willing to listen and be questioned.. they got the boot. I wish you luck finding your thyroid specialist. They are a rare breed. I readily pass the name of my integrative medicine internal medicine specialist on whenever I am asked. So far she has helped me and six others I have referred to her. Pity you all don't live in my town. You could benefit from my leg work.
If we learn by our mistakes, I am working on one hell of an education.
Hashimoto's Facts: Do antibodies correspond to your level of TSH? My personal non-MD opinion and answer: Not necessarily.
The TSH and antibodies production mechanisms are not directly linked. My layman's explanation on the matter is the TSH (thyroid stimulating hormone). This is the pituitary function call to the thyroid that screams out.. HEY! I NEED MORE T4, MAKE IT NOW! The thyroid then responds by activating its production enzymes.. TPO and TG. Now the thyroid begins to produce more T4 so the TSH will decrease. In the case of Hashimoto's your immune system sees the TPO and TG as a threat to your system. So every time the TPO and Tg are activated, TPOAb and TGAb are produced to attack and destroy the thyroid. How long and how high the antibodies go is up to your body. Prophylactic treatment of my Hashimoto's may have saved my adrenal glands and no telling how many years of dysfunction symptoms. Studies indicate this may be true in others as well. Here is a national institute of health study on the matter. http://www.ncbi.nlm.nih.gov/pubmed/11327616
The acredited referreed publication on this matter:
"One-year prophylactic treatment of euthyroid Hashimoto's thyroiditis patients with levothyroxine: is there a benefit?" Thyroid, 2001 Mar;11(3):249-55
ALL that an MD can tell for certian is whether or not you have antibodies present. If you are positive in TPOAb or TGAb you have Hashimoto's. This means your immune system is attacking your thyroid and will kill it eventually. WHEN? Well that is as individual as you are. Depending on how many you have... the destruction of your thyroid could be near complete... just beginning.. or at its peak. Anything over 1000 is seen as BAD. When levels get this bad.. added AI side bonuses should be looked for.
Other common issues with Hashimoto's:
1) Hashimoto's is know for thyroid flares, oscillations between hyperT and hypoT states. Some MDs referr to this as Hashitoxicosis.. others say Hashitoxicosis is having Graves and Hashimoto's disease. What Hashitoxicosis means is you have hyper and hypo thyroid episodes and medicating will be a constant adjustment issue.
2) Mild to moderate “joint and muscle pain”. This particular symptom is also one of those that seems to linger in some patients, months or even years after starting treatment for their hypothyroidism, with hormone replacement medication.
3) Some patients actually experience a worsening of their joint/muscle pain, once beginning thyroid medication. I had this happen. I am not sure if it is the fact I went so hyper after adjusting to 75 mcgs or just a side bonus of being thyroid dysfunctional and my body not liking the fact I am trying to keep it normal.
4)Most patients see improvement of rheumatic symptoms with hormone replacement therapy to treat their hypothyroidism but if relief is minimal, they may to be tested for co-morbid arthritis, including the autoimmune types.
How do I know when my thyroid is under attack and I need to watch for a Hashimoto's flare? Well when I go hypoT because my t4 and t3 levels are not right for me.. my pitutary gland calls to my ever growing thyroid by way of a TSH shout out. "Hey, Thyroid.. need some more T4 get cooking!" The thyroid sighs and thinks about it.. then tries to do its job. In Hashimoto's patients and my case the thyroid activates the TPO enzymes begin to make and release T4. It is at this point my 2000 lazy and bored TPOAb and TGAb perk up and yell, "ATTACK!" Or whatever they scream as they charge and attack. It is at this point that my thyroid feels full and aches, it is a continual process that starts out more intense in the morning and lessens as my T4 supplementation takes away some of the burden. The throb, pulse, ache and swelling in that area just at the base of your throat bracketing your wind pipe is classic thyroiditis.
Well there is my 2 cents worth on Hashimoto's.
If we learn by our mistakes, I am working on one hell of an education.
Mkgbrook -- thanks for the reply and all that info. It's really helpful.
In my own case, I have two recent TSH readings of 3.1ish and 3.46, a number of hypo symptoms, ultrasound indicating slightly enlarged thyroid (at least according to the radiologist who read it), and above range -- although not super high -- antibodies. But my free thyroid levels were never tested, even though I asked for them.
I imagine I'll eventually find a doctor to provide treatment. The doctor I mentioned in this post basically said that although he thinks most endos won't give me anything, he also said some might. I guess I'll just have to go through various doctors until I find one, assuming my primary care doc provides the referrals. I can try calling them ahead of time, but I expect many will say they won't know until the doctor sees me in a visit.
Regarding Armour vs. Synthroid (and various flavors of it), I've read that the problem with T4 only is that many people do not convert T4 to T3 properly. And doctors are somewhat wary of prescribing Armour anyway. But so long as free thyroid levels are tested, isn't it easy to see how well a person is converting T4 to T3? Some people seem to do fine on synthetic T4... while others need Armour or T4 + T3. Instead of upping a dose of T4, or a doc saying a certain medication is automatically better than another, couldn't free thyroid labs more or less tell a doctor (and patient) which medication would be better or not? I realize some people do better on certain medications than others, regardless of labs, but it seems the free T3+T4 tests would provide a good gauge as to who would do better on Armour, and who would be better on Synthroid -- at least that's what I can gather from my limited knowledge so far on this thyroid stuff.
And in regard to getting treatment, I do have a somewhat odd question for those who have gone through several docs, had problems, etc:
Have you found a woman doctor to be better than male doctors?
I ask this, as in my experience with other ailments and doctors in general, is that female doctors tend to be better than most males, as they seem more patient, provide more time in visits, are more compassionate, and listen to the patient more, as compared to most male doctors. This isn't a steadfast rule, of course, as bad doctors come in both sexes. I just notice that when I have seen the typical male doctor for other health problems, they may be competent, but they don't always listen to patient's complaints and are usually in a rush. They also dislike it when you disagree with them and quite often don't even want to discuss medications or the disease itself. Most male doctors also strike me as not actually caring how you feel, or if you get better -- they just want to treat you and get you out of the office as fast as they can. Or not treat you, in this particular case...
Just a general observation from about half a dozen other doctors I've seen in the past -- curious if anyone else has noticed anything similar.
I'm not of the opinion that women doctors are in general any better, more compassionate, smarter, etc, than men doctors in general.
A female endo diagnosed my Hashi's after a male primary refused me even a basic TSH test. That's to her credit. At the first visit, she patiently listened to my laundry list of symptoms, nodded knowingly, said they would improve with treatment. Said that even though TSH wasn't 'that' high [It was 6.98 - but I didn't quibble.], it's better to treat Hashi's when symptoms are present, even before levels get out of range because it can prevent goiter and nodules. Great! I thought I found heaven.
Then... She prescribed Synthroid, and I was overmedicated and hyper within 6 weeks. Dose was reduced to the smallest possible therapeutic level. I was still hyper and overmedicated after another 6 weeks. This smart, compassionate endo then told me to stop taking the Synthroid and wait until I got "sicker" so that we could try Synthroid again... until I could "tolerate" it. My unmedicated TSH had already reached 7... I'm not sure how much "sicker" I would have had to be to "tolerate" that Synthroid, but I knew I wasn't going to wait it out. Then she had the boldness to say my symptoms weren't from my thyroid "anyway".
I went home from that visit and started a new search for both a primary and an Armour prescriber to treat my thyroid. I found both in one person... a male, homeopathic licensed MD in family practice. He never once questioned any symptom I reported, never argued when I felt a dose increase was in order, never takes into account TSH alone.
You can find treatment if you live in a place that has a good-sized number of doctors. (Is that NY state or NY City? I imagine there are plenty of docs there.) It will take some effort - it always does, doesn't it? - but I feel sure you can find it if you're persistent enough.
I would say you could find good care in a doc of either gender, but it's less likely to be an endo than someone of a more holistic speciality. Try looking specifically for an Armour prescriber, even if it turns out to not be the right med for you. Armour Rx'ers are more open-minded about early treatment - in general. There are bad apples in every barrel.
It could be I've just had bad luck with some doctors (speaking of past doctors for other ailments) and they just happened to be male. Not that I wasn't treated, but I had two docs who got mad when I had questions about the medicines they wanted to give me. I sorta find it annoying when a doctor isn't wiling to have a conversation about treatment or gets upset at having to spend 5 minutes with a patient.
I am on Long island, NY, and there are plenty of docs to choose from here. They generally have several month waits to see them, but I guess that's basically the same anywhere. There are two armour docs in my general area (within an hour drive) and I'll consider them. There is also a 'Top Doc' endo I am considering too. Although I may just see an endo that was recommended to me by another doctor, since I already have an apppointment with him, in 2 months. Faster than the 4-6 months most other endos require, although I'm not sure if that means he stinks, or simply had an opening then.