Endocrinologist says testing waste of time

Spoke with endocrine doctor and she said to stop testing for endocrine, thyroid, hormone, pituitary, autoimmune diseases, etc as it is a waste of time. Just after I private paid to have pituitary blood levels checked and primary care doc ordered MRI. She said it can't be pituitary since I'm still getting my period fairly regularly. She thinks all my symptoms are from food and pain medicine. I eat healthy, fresh fruit, veggies, gluten free, and organic and bits of 1-2 5mg Percocet in a 24 hr period, as it is the only thing that helps with the pain. Pain is one of my main symptoms along with dizziness, brain fog, weight gain, light sensitivity and vision issues, frequent nausea and migraines. I've had all of the symptoms for over a year, the pain has gotten worse the last couple months and that is when I started the pain medicine. So far the tests that have been abnormal are TSH 0.01, multiple cold nodules in thyroid gland, and uptake scan showed hypo at 7% (10-20%). I agree that we've looked as far as possible into thyroid and ideally should not be taking pain medicine, but am in a lot of pain and think the source of the pain should be figured out. Do others agree that looking into endocrine and pituitary are a waste of time? If it's not that, what else could it be?

50 Replies

  • No, personally, I don't. And, unless she can come up with another plan, I think she should stop talking out of her hat.

    Is TSH the only thing you've had tested? It would help people get an idea of what's going on if you posted your blood test results, with the ranges.

  • I've posted them a few times before, they are normal so I just listed the tests that were abnormal.

    T3, free 3.9 (2.3-4.2)

    Free T4, index t7 2.6 (1.4-3.8)

    T4 thyroxine, total 8.1 (4.5-12.0)

    T4, free 1.3 (0.8-1.8)

    T3 uptake 32 (22-35)

    T3 total 114 (76-181)

    Thyroglobulin antibodies 1 (<or=1)

    Thyroid peroxidase antibodies 6 (<9)

  • It's worth posting the normal results as well as sometimes posters can see what doctors cannot see having gone through it themselves.

  • Yes, didn't mean I didn't want to post again, just new and posted them before so didn't know if I should post again or if there's a way to post test results in my profile or if I should include them with each new post. I absolutely agree and believe from personal experience that people on support sites, with the health problem, know more than docs that are treating it.

  • You can put some in your profile but as people get tested all the time and their results change you would have to change them.

    Alternatively if you use the same computer all the time, you can write them out in Notepad and save them. Then when someone asks you can just copy and paste them from that file into your post.

  • Here we go greygoose.... 'If you are going to talk out of your backside Doc..don't sit down or I won't be able to hear a word you are saying!' x I just cannot resist adding my tuppence worth x

  • lol

  • So glad you have a sense of humour...I think it is what helps to get us through xx

  • Not much left in life without it!

  • I'm so glad you have found an endo who knows about nutrition. Maybe she will then test your ferritin, folate, vitamin D and ferritin and ensure they are optimal in the range not just adequate plus shared, explained your results with you and how they influence your optimal thyroid hormones.

    Oh she hasn't done ANY of that?

    I suggest you get a copy of ALL your bloods test WITH ranges from all your doctors. If you are in the UK it is your right to request them under the Data Protection Act 1998. If you are challenged by receptionists/secretaries just say you want them for your own health records.

    When you have got them post a new thread with the results and ranges, so posters can comment and advise.

    BTW I'm currently watching a Youtube video on Tim Noakes research career where in the introduction he states to other doctors - "Either you cure the guy or he goes on the internet and cures himself"

  • Believe I have had those tested and have the results. I'll jot them all down and post shortly.

  • I've had loads of testing done, yet no diagnosis or treatment plan and am not on any medications for my symptoms other than medicine for the pain. I agree it's good she knows about nutrition, but don't think it's the sole source of my health issues.

    Folate serum: 23.0 (>5.4)

    Vitamin b12: 759 (200-1100)

    Vitamin D,25,OH, total,IA: 35 (> or = 30)


    Saturation: 31 (11-50)

    Iron binding capacity: 302 (250-450)

    Iron, total: 94 (40-190)

  • You have missed of one of the results both myself and GreyGoose asked for. Can you put down your ferritin result? This is not your iron result.

    Also as you have had a lot of tests can you put down these as well:

    1. C reactive protein (CRP),

    2. erythrocyte sedimentation rate (ESR)

    3. Haemoglobin or haemoglobin estimate

    (I was being rude about your endo.)

    BTW what country are you in?

  • C-reactive protein: 0.16 (<0.80)

    Sed rate: 11 (< or =20)

    Hemoglobin: 5.3 (<5.7)

    I'm not seeing ferritin, so perhaps I haven't had that one done. I'll keep looking and post if I find it. I'm in California, but from the UK and couldn't find a thyroid support site in the states.

  • Ahh ok.

    That makes it a bit difficult as the NICE guidelines don't apply to you.

    What they say anyway is if you consistently have a TSH measured of less than 0.4 mU/L on repeated tests but your T4 and T3 are in range then you have sub-clinical hyperthyroidism.

    If you are over 65, post-menopausal, have cardiac risk factors, have osteoporosis or have symptoms treatment should be offered.

    There must be something in the states that applies to California which states similar as the US is bad on thyroid disease as well.

    OK I've found this but haven't got time now to go through it - aafp.org/afp/2011/0415/p933...

    I've also found this - ncbi.nlm.nih.gov/pmc/articl...

    Which the NICE guidelines must have come from. It's in the Journal of International Journal of Endocrinology and Metabolism

    BTW Your B12 could be higher near the top of the range, your vitamin D is OK though it would be better at 40ng/ml, your folate is fine and you don't have signs of inflammation.

  • Thank you! I'm 37 and female. Hard to make sense of it all and appreciate your time and response. I'll look through the link.

  • The journal article states if no other cause can be found, you are still having symptoms AND you repeatedly have a low TSH than you should get treated on your symptoms.

    However I would see another endo. Being in the US and having to pay/use insurance means you have more choice than if you were in the UK.

    Finally make sure you have ALL your thyroid blood tests at 8-9am in the morning after fasting. In fact do that for all blood tests from now on unless you are specifically told not to fast. That way you can compare them as they would be taken under the same conditions.

  • Thank you. So basically, opiates should not alter my TSH and Looking into endocrine is not a waste of time. And if all other tests are inconclusive I should treat based off of symptoms.

  • Please avoid opiates at ALL costs.

    If a doctor gives a prescription bin it as the only thing they may help treat is the migraines and they will mask the other symptoms if you are lucky. Plus they are addictive.

    In regards to treatment based on symptoms you need to show that your TSH is too low repeatedly not just in a couple of tests.

  • I've already been taking the pain medicine for two months. The pain is too severe, nothing else I tried helped. It's constant pain all day everyday and keeps me up at night, every night. I'd be happy to stop taking it, but haven't found anything else that helps and don't know the cause of the pain.

  • The problem you are going to face with doctors is some are going think that they have solved your problem by giving you the pain medication and that you are an addict just trying to get more medication out of them so they can ignore you.

    This is why I stated avoid opiates at all costs.

    If they had offered you anti-depressants, which is the British way, I would also be telling you NOT to take them as then they can classify you as mentally ill and again ignore you.

  • Sorry, maybe I'm not clearly stating my questions and concerns. I've had loads of tests done, thyroid, vitamin, autoimmune: celiac, lupus, rhumitoid arthritis, etc. all normal or negative. The ONLY test abnormal are TSH 0.01, scan showed hypo at 7%, and multiple cold nodules. Even though my symptoms started long before I started pain meds, my questions are:

    Does opiod pain medicine effect thyroid function, TSH, and uptake scan?

    Based off my abnormal results, is continuing to look into endocrine function a waste of time and money?

    If it's not endocrine, is there anything else that can effect thyroid levels and function?

  • I think your question was quite clear. :) But just giving yes or no answers isn't very satisfactory, is it. People need to know all the details because something might just ring a bell with someone. Our collective knowledge and experience is far superior to one lone doctor. That is out strength. But without all the details, we can't do much.

    Lots of things can affect the TSH - that is why it's such an unreliable test. It is highest early in the morning, and drops throughout the day - what time did you have it tested? Also, it drops after eating. So, if you had it done just after lunch, it would be pretty low.

    Also, when a doctor says 'normal', all they mean is 'in range', but that's not the same as optimal. The ranges are so rediculously large, for the most part. On top of that, doctors hate thyroid. They never, ever want it to be thyroid, which is why they have invented a series of spurious 'diseases' to explain symptoms. They will do every test under the sun rather than the correct thyroid tests. We all know this from experience. You doctor said it's 'food' the reason for your symptoms. That gives you plenty of scope! Did you not ask her to be more precise? Which 'food' exactly?

    We're not all being morbidly curious by asking for more details. It's just that you are asking impossible to answer questions without them. :)

  • One of the TSH test was fasting in the morning about 8am, the other was about 11am after breakfast. We've done food allergy testing, only showed slightly off for egg whites, which I rarely have, so she wants to do more testing on food, like a journal and food elimination diet. I just find it hard to believe that all my symptoms are food related and discouraged that she said I'm wasting my time and money looking further into endocrine and pituitary.

  • Yes, but that's doctors, isn't it. You have to take them with a pinch of salt!

    I suppose it might just be possible that all your symptoms are food related, and best to explore that avenue to make sure, but still keep an eye on your thyroid. Don't ever forget that possibility.

  • I've seen someone has posted when you posted at the beginning that with a TSH of 0.01 you are hyperthyroid. Is the endo refusing to:

    1. Acknowledge this, and

    2. treat you for this?

  • Yes, I am not being treated or on any thyroid or endocrine medications and have not received a diagnosis. The endocrine doc believes it is not endocrine related since TSH and scan contradict and the nodules are cold.

  • That is really unbelievable. When faced with a puzzle, low TSH indicating hyper, and a scan indicating hypo, the endo just says it's not thyroid! What explanation Did she have then? It is obviously something that needs looking in to! Crazy.

  • She said it's the pain medicine and something in my diet. That's why I asked if the pain med could effect my TSH level, she said it does. I'm fairly certain it's neither of those things, but thought I'd ask here.

  • You TSH is very low..


    What hormones does my pituitary gland produce?

    The anterior pituitary gland produces the following hormones and releases them into the bloodstream:

    Adrenocorticotropic hormone, which stimulates the adrenal glands to secrete steroid hormones, principally cortisol

    Growth hormone, which regulates growth, metabolism and body composition

    Luteinising hormone and follicle stimulating hormone, also known as gonadotrophins. They act on the ovaries or testes to stimulate sex hormone production, and egg and sperm maturity.

    Prolactin, which stimulates milk production

    Thyroid stimulating hormone, which stimulates the thyroid gland to secrete thyroid hormones.

    There are also some hormones that are produced by the hypothalamus and then stored in the posterior pituitary gland prior to being released into the bloodstream. These are:

    Anti-diuretic hormone, which controls water balance and blood pressure. It is made by the hypothalamus but is stored in the posterior pituitary gland prior to being released into the bloodstream.

    Oxytocin, which stimulates uterine contractions during labour and milk secretion during breastfeeding. It is made by the hypothalamus but is stored in the posterior pituitary gland prior to being released into the bloodstream.

    Each of these hormones is made by a separate type of cell within the pituitary gland, except for follicle stimulating hormone and luteinising hormone, which are made together by the same cell.

    You have had virtually NO testing of your pituitary. Dr. Friedman in LA is very good..google him. Theodore, i think, Friedman, Endocrinologist.

  • Thank you, Faith63. Your post is very helpful and informative. I just private paid to do a pituitary panel, waiting for insurance to approve a MRI, and have an eye appt scheduled next week. My endocrine doctor told me there is no way my health issues are from thyroid, pituitary, or endocrine and the tests were a waste of time and money, which is why I posted on here to get others opinions. She thinks all of my symptoms are from food and pain medicine and I don't agree. I called pituitary experts and need a referral, but my doc said there's no point as that's not what's wrong with me.

    Pituitary panel includes: atch, LH, fsh, hgh, cortisol, estradiol, testosterone, igf-1, and prolactin. We'll see if these test, the MRI, and eye exam were a waste of time once we see what the results say. Either way, I want to know.

    Thanks again, I will look into Friedman, the endocrinologist. He's about 8 hrs away from me, but at this point I'll do whatever I have to for answers.

  • Can you tell us a little bit more about the pain you are suffering, it might give a clue as to what is going on. You must be feeling really down at the moment, in pain, inconclusive / contradictory tests, and an endo who just gives up and walks away.

  • Yes, exactly! Very frustrated, discouraged, confused, scared, and worried, not sure what to do or think or where to go for help and answers. I've been very ill for over two years and want to be healthy again. Had four emergency abdominal surgeries(April 2014), intestinal infection(July 2014-February 2015), couple months in the hospital(may-August 2014), benzodiazepine withdrawal(April 2015), and now this.

    The pain is all over(started April 2016) achy and stiff, like a cross between flu and arthritis. I'm 37 and don't have arthritis, but imagine this is what it's like. I can't move my fingers or ankles and legs as they are stiff and painful and feel as though they're weighed down. The pain is worst in my hips and lower back, feels like someone is stepping on my tail bone/sacrum with a high heel shoe.

  • If you haven't seen a rheumatologist, go and see one so they can strike that off your list. Then if they say you have to see an endo, go and see a completely different one.

  • Also, I know my father in law was admitted to hospital with severe pain and swelling, and they considered Lyme disease, don't know if your symptoms fit?

  • OMG..all of my stuff started after a cold turkey benzo withdrawal. I did not sleep for 2 months after i was pulled off and suddenly gained 11lbs overnight, to a total of 30lbs in 3 months...blurred vision, sagging eyelids, skin wrinkling, dizzy and not able to digets food etc.. I had to order my own tests. Dr's just said i needed to go on a diet!! I had Hashimotos and my thyroid stopped working, then my pituitary blew out. Sick since 2008, Oct, when i lost and ton of weight, trembling and diarrhea..on benzo's for 12 years. Those doctor's needs to be held accountable for taking my life from me.

    The FDA says you should not be on benzo's for more than a couple of weeks, tops. And yes, they alter your hormones, disrupting the hypothalmus, Pituitary, Adrenal Axis..YES!! Got that straight from Malcolm Lader MD, from the UK, a top Benzo researcher.

  • Wow! So sorry you went through all that and I definitely know how you feel. It's truly been hell. After all my surgeries the docs gave me a very hard time saying I shouldn't be in pain (after 4 emergency surgeries and a severe and deadly intestinal infection) and didn't want to give me anything for it, but freely misprescibed benzos!! Benzos did far more damage than the pain medicine did. Interesting, so it definitely seems like benzos could be a catalyst for thyroid, pituitary, etc issues to arise.

  • Also, terrible pain too and fatigue..in the beginning or withdrawls, i had terribel, terrible brain, issues, terrifying! Panic type attacks, racing heart..Now diagnosed with fibromyalgia and chronic fatigue syndrome..i don't believe it one bit. I believe you are in protracted benzo withdrawal, if you are not damaged otherwise..meaning something else is wrong.

  • Faith63, that's what I thought it was! I had a terrible time after stopping them suddenly after being misprescibed for almost a year! Dr said to just stop and I'd be fine, he was very wrong!! I'm on a benzo support site and have posted about everything over the last 16 months since I stopped. I've thought all my symptoms were from benzos, so didn't look into it until my doc ordered the TSH and it was low. She ordered it when I went in for the pain, which started in April and got worse in July, and also the weight gain, I've gained 80lbs this year and am nauseous and don't eat much, but healthy when I do, so she ordered the TSH. That's what prompted all this other thyroid testing. I posted on the benzo site, if anyone had altered thyroid levels from benzos and didn't get much response, so thought this was a different problem. I don't know what to do or think anymore. Horrible migraine today. Thank you for your reply, very interesting!

  • why don't you stay in touch. PM me and we can compare notes. I am finally seeing a pituitary specialist in October. The weight is an endocrine/inflammation problem. Mine showed up as hashimotos, because i probably had it for a while before the withdrawal. 80lbs in 16 months, is really an issue. Let me know whet the pituitary tests show.

    I hope someday we can go after the manufactures of these drugs ..no one told us this would happen, did they? I had heard that there would be a huge reveal of hidden drug studies showing the damage that they cause, in 2014 in the UK, but it never happened. I will have to ask around about it.

  • Definitely! I've had a very hard time over the last 2.5 years of docs not believing me, it is a huge relief to know I'm not alone in my struggles and symptoms, but very unfortunate either of us know about this from learning the hard way through experience.

  • I hate to say this because its a scary prospect, but have they considered MS?

    Since you are in the US I would suggest you look for a functional medicine specialist. They seem rather more clued up than normal doctors.

  • Thank you everyone for your help and input. I will look into ms, rheumatoid, lymes, and a functional medicine specialist. But think I will take a day off from thinking about it (tomorrow is a holiday here and see what the test results are on Tuesday. Stress and worry isn't helping anything, and will get back to figuring out the puzzle then. Thanks again!

  • try and rest! I did learn from seeing 50 doctors, that if the right tests aren't done, with the endocrine system or treatment is not offered based on symptoms, no amount of functional medicine will help..you cant fix missing hormone that way. I put off the specialist, stupidly thinking each doctor would help me get well enoiugh to travel to that specialist..it didn't work, each year i am sicker. I can't believe i didn't go to the pituitary center in 2012 and wasted more years of my life seeing functional doctors, rheumatologist, 5 endocrinolgists, on and on..i am very angry at myself.

  • I had periods and also had a 3cm pituitary tumour!

  • Thank you very much, Loo44. Just proved my doc was wrong, which I thought she was. Do any of my tests or symptoms sound familiar to you? How are you doing now?

  • Yes, all my symptoms are similar to yours. I can include noise sensitivity and a diagnosis of ME/CFS and fibromyalgia too. I was extremely poorly after brain op Jan '14 and spent nearly a year bed bound. My tumour was ACTH high and endos say its "silent" Cushing's. I was on hydrocortisone for about 6 months and am now on daily growth hormone jabs and I've switched my levo to self sourced NDT (endo is monitoring me, but won't prescribe it). I discovered that I was also folate anaemic and low B12 and Vit D. I self inject B12 weekly as dr will only do 3 monthly. Shout if I can help further xx

  • Thank you Loo, I really appreciate that. Sounds like you've been through the ringer and it's been a job finding the right balance of what works and continuing diagnosis and tests. I hadn't heard of cfs, but that sounds familiar as does sound sensitivity, my son can vouch for that as at least 100 times a day I ask him to turn down the volume on the tv, poor boy. I've been mostly bed bound for a couple years and know how awful it is. Thank you for offering continued help.

  • I have a squished pituitary and am really unwell. I was not given proper testing to determine which hormones i am low in, so i have been very ill. How are u now?

  • Folks. Before i found this thyroid i thought about lyme disease. I explained to doctor but he never checked. The best tests for lyme are in usa or germany

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