Questions to ask my endocrinologist?

Hi everyone! Hope you're having a happy, joyous holiday season.

I have a bit of a complex problem going on and I'm hoping someone here may be able to help me out. I should preface this by saying I do not have a diagnosed thyroid condition. Please let me know if this is not an appropriate location for this post, you all just seem to have incredible knowledge. I am seeing an endocrinologist because I was referred there after my GP thought it was an issue with my thyroid. I saw the endocrinologist back in August 2016 and he booked a follow up for me - it is this coming week. I was hoping you guys could give me some ideas/questions that are important to ask?

My symptoms include rapid weight loss (sometimes coupled with a decrease in appetite), hair loss, fatigue, scalloped tongue, and GI irregularity.

Again, all my thyroid levels were presumably normal. I have a low ferritin and an elevated DHEA-S level, but no action has been pursued.

I'm not entirely sure what to expect from this appointment, as I still do not have a definitive answer. Anyone have any ideas or suggestions?

Thank you, I am so grateful for each and every one of you. Best wishes for the New Year.

27 Replies

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  • Do you happen to know what your thyroid levels were? The actual numbers? Why do you say they were 'presumably' normal? As your endo has made a second appointment, it could be that they were not normal, and this will be a recheck to see if they're still the same or if they've got worse. I'm afraid you don't really give us much to go on. But, the most important thing is to get copies of you results - all of them, with the ranges. A doctor's idea of 'normal' is often very different to ours.

  • Hi, sorry about that. I'll find those labs and upload them right now. I do have the copies. The appointment was actually scheduled before any of my results came back. Like the first time he saw me, he said he wanted to see me again in three months. I do collect most of my own labs, as I like to analyze them myself as you said.

    Free T4: 1.35 [0.76-1.46]

    TSH: 1.610 [0.360 - 3.700]

    Total T3: 93 [60-181]

    TSH Receptor AB <0.90 [<=1.75]

  • Well, the FT4 and TSH look good. But, such a pity they did the Total T3 and not the Free T3, because the Total doesn't give us any useful information. Why did they do the TSH Receptor AB? That's a question you could ask him. What was he looking for with that test? It would have been more useful to do the TPO AB and the Tg AB, to see if you have autoimmune thyroiditis. So, you could ask him to do the missing tests.

    Just how low was the ferritin? Is he - or is he going to - supplement that? How about your vit D, vit B12 and folate? Maybe they are low, too. But, I'm not sure there's anything that can be done about high DHEA. Might be an idea to test cortisol, though.

    I'm saying all this, but you are obviously in the US, and I have no idea if it's easy to get these tests in the US, so forgive me if I'm suggesting the impossible. :)

  • Thank you for your response!

    I did not know that there was a significant difference between Total T3 and Free T3... interesting! I was under the impression that the TSH Receptor AB was checking for Graves' Disease, as I have familial history. Thank you for the other suggestions!

    My ferritin measured at 11 ng/mL [8-252]. No plans for supplementation. Though it was not him that tested it, but rather my GP. She did not mention it being low. I have not had my Vitamin D, Vitamin B12, and/or folate measured. Is this something that you would suggest having done? Does this fall within the endocrinologist's scope? Or should I ask my GP? I'm also seeing her next week for my annual. I'm definitely going to ask about DHEA, I just didn't know if anyone here was knowledgable about it. I spoke with him on the phone regarding the test results and he said, "we were going to keep an eye on it".

    To be honest, I'm not sure how accessible those tests are here either. There's only one way to find out. Out of sheer curiosity, how could you tell so easily that I was from the US?

  • Because you wished us 'happy holiday season'. A Brit wouldn't do that, We still call it Christmas! lol

    Your ferritin is very low. You should ask for a complete iron panel to see if you have anemia. The endo might not like being asked to do vitamins and minerals - some do, some don't. Ask the endo, if you see him first. If not, ask the GP. But, definitely, the other three are worth doing.

    I think that keeping and eye on the DHEA is about all they can do. I've never heard of anyone having high DHEA, before.

    OK, so because of the weight loss, and your family history, they thought you might have Graves. But your antibodies are negative, and your TSH is far from suppressed, so it doesn't look as if you do have it.

    There are three types of T3 : Free T3, Bound T3 and rT3. The only one the body can use is the FT3 - which is why you want it tested. A Total T3 test includes the FT3 and the Bound T3, but doesn't tell you how much of each. You could have low Free T3, and a lot of Bound T3. Low Free T3 is what makes you hypo. High Free T3 is what makes you hyper. Your Total T3 is quite low, so one would guess that your FT3 is low, too. BUT, your Total could be nearly all Free, and not much Bound. So, it doesn't do to make guesses.

    rT3 is something entirely different, and you don't have to think about that at this stage of the game. :)

  • Thank you for explaining! People here can get offended by "Christmas" but I meant "happy holidays" more as a blanket statement for Christmas and New Years. You were correct though, I am from the USA. Funny how people can pick up on things like that.

    After collecting my own labs, I did my own research and did learn that the ferritin was low. I have not done anything to reverse it yet, though. I want to get more accurate labs/talk to my GP before I begin treatment. I have a normal H&H, but I am aware of the other iron studies that can be low. I will be sure to jot those other things down to ask for. I see the endocrinologist a day before my GP (who I have a way better relationship with).

    I guess DHEA is often elevated in those with PCOS (I made a post there) but I do not have most of the classic symptoms. It was surprisingly elevated, nearly 70 ug/dL above the top reference range. I guess high levels are often found in people with adrenal problems...

    Agreed, all my numbers seemed very normal. Again, sorry if I shouldn't have posted this in the thyroid group - I've just seen SO many knowledgeable people here.

    Thanks for explaining all about T3! That does make a lot more sense!

  • Absolutely no reason why you should post this on a thyroid group! We talk about all hormones, because they're all inter-linked, and if one is off, the others are likely to be, too. If not now, then later.

    And, other people will be along later, who know more than me. So, you're sure to get a lot more information.

    I could write a whole discourse on the down-grading of 'Christmas' to just another 'holiday', but I will restrain myself! lol

  • Okay, thank you for the reassurance! I really do appreciate everyone's help on here. There is quite an amazing, resourceful group of people on here.

    Haha, I get it. So many people here in the USA are very sensitive to it. Though, if someone wished my a Happy Hanukkah, I would not be offended. To each their own.

  • Absolutely! :)

  • Sorry, writing this in the middle of the night, I made a mistake! Make that 'Absolutely no reason why you should NOT post...' Sorry about that. :(

  • No worries, I figured that is what you meant :) Thanks again!

  • Please instead of saying "normal" for any test regardless of whether it's hormones or vitamins and minerals post the result and range.

    The reason for that is what doctors call "normal" simply means you shouldn't have a serious disease with those levels, but it doesn't mean you won't be ill.

    Anyway you want a haemoglobin level of around 13g/dl with an absolute minimum of 12g/dL. If your ferritin is as low as yours you risk iron deficiency aneamia in a few months as your iron stores are depleted. In addition while your ferritin is in range I wouldn't be surprised if you are having symptoms of non-anaemic iron deficiency e.g. breathlessness,fatigue, hair loss, poor nail health, skin problems as it is at a value even lower than what the WHO recommends. You ideally want your ferritin level half-way in the range.

    The weight loss won't be caused by the low ferritin and neither will the GI issues. However it's a good idea to find out what these issues are before supplementation with iron, as iron supplements can make GI issues worse.

  • Hi, my apologizes. What you're saying about normal levels makes sense.

    My hemoglobin also seems to hover within in 12-13 g/dL range. In my last two CBCs, my hemoglobin has been 12.1 g/dL and 12.8 g/dL. Though I haven't had that checked since October 2016. I believe that is why my GP did not mention the low ferritin, as it was just within limits. I am having some of those symptoms as well. I'm going to speak with my two doctors about raising it for sure. I've read that it is often associated with heavy menstrual bleeding, but I'm not really sure mine is all that heavy.

    I've been working on figuring them out. They're really intermittent (the GI stuff) so it's really hard to convince myself it's worth figuring out. Though I have lost quite a bit of weight (60 lb/ 27.3 kg).

    Thanks for all your guidance!

  • Worth making a diary of your GI symptoms and anything you ate, drank and did around the time you had them. Lots of people have food interolances and don't notice for years until it gets really bad.

  • That's not a bad idea, thank you!

  • If you want to boost your iron levels naturally, drink orange juice with your meals....not tea or coffee.

    Vit C increases the absorption of iron.

    I have iron overload so am the opposite to you although I akso have thyroid problems and nodules.

  • Hi Megan, There are many excellent websites and this is one of them. It points out the lab levels you need to support your thyroid function. Your ferritin is really poor and so important. I think it helps bring iodine to your thyroid which next to breasts is most important.

    stopthethyroidmadness.com/r...

    Adrenals can be involved and DHEA is produced there using cholesterol stopthethyroidmadness.com/d...

    Something is out of sync and often estrogen dominance causes progesterone deficiency. From STTM:

    PROGESTERONE

    Though many (not all) females see their sex hormones mess up in conjunction with having hypothyroidism…and thus, can need progesterone supplementation to counter estrogen, there is a risk of having the progesterone convert to too much cortisol and causing miserable symptoms of high cortisol!

    In the hormonal pathway of conversions, there are some who convert progesterone to cortisol far easier than others. So each person has to figure out how much progesterone they can handle, which is probably individual. If cortisol is low, though, progesterone converting to cortisol can be a slight boon!

    I know it is looking more complex but it's good you are seeking answers.

  • Hello, If you live in the USA you will find it relatively easy to have tests done that can identify your health problem. Such tests are not carried out in the UK. Many patients in the UK have travelled to the USA for these tests and discovered that their "thyroid" symptoms are in fact indicative of one or more chronic infections. These infections can cause serious systemic problems involving every system and every function in the body including every part of the endocrine system, gut, brain and so on.

    My daughter is now having treatment from a doctor in California following 20+ years of illness and over ten years chasing only the thyroid route. She too had always had "normal" thyroid test results, but private doctors here in the UK persisted for many years with incorrect thyroid diagnosis and treatment. Like many others she discovered that by treating only with thyroid, adrenal, vitamin and mineral supplements her health continued to decline.

    Some of the infections involved in chronic illness can include viral infections (HHV6, EBV, cytomegalovirus), bacterial infections (Lyme disease and co-infections), Mycotoxin illness. These can become complicated by MCAS, Pyroluria, methylation difficulties, poor nagalase levels, candida and gut dysbiosis.

    Fortunately you can have reliable tests for these in the USA which are covered by your health insurance. I have a lot of information about these conditions and many links if you want it and I'd be happy to PM it to you.

    Jane x

  • Hi, Jane! Thanks for such a through response!

    I am indeed from the USA. Very interesting what you're explaining, but it all does make a lot of sense. I hope that your daughter is feeling better and was able to find her correct diagnosis and treatment. I would love more information!

    Unfortunately, I'm in a situation right now where all the routine blood work has been normal, so doctors are trying to rule this out as anxiety/depression... especially because of my age. It just feels like so much more than that. I don't feel depressed and I don't have any more anxiety than I've had my entire life...

  • If only British GP would be as thorough....I now have early cirrhosus of the liver as my iron overload wasn't acted on.

    And I get hot flushes at 76 years old..wake up every day with one....I'm sure I could do with advice from an endricrinologist.....FAT CHANCE ,!!!!

  • I'm sorry to hear about that. I've been blessed with an incredible GP.

    Do you have the ability to get a referral to one? I'm afraid I don't know too much about the NHS.

  • Maribee,

    Check your B12 and folate levels. Low levels can cause night sweats and hot flushes.

    ncbi.nlm.nih.gov/pubmed/252...

    ncbi.nlm.nih.gov/pubmed/252...

  • Thanks for that clutter...will do.

  • You ought to reassess your Dr's as they seem to missing drawing conclusions from your tests and the other tests they should have done. Once they start on the anxiety/depression route do reassess rapidly. After all you are paying them. Good luck.

  • Yeah, I agree. I've seen multiple. They normally talk about their things first, then ask about mental health. I've never thought it could be the cause. With so many negative results, it's getting harder to dispute. Thank you!

  • Hi, everyone! I just wanted to give an update.

    I'm now officially down 67 pounds... yeah. The endocrinologist is still concerned. He did more blood tests, including CMP, LH, FSH, estradiol, thyroid levels, cortisol, and I did a dexamethasone suppression test. I asked about my ferritin level and he said he is not concerned because my H&H was still normal. Then, I saw my GP the next day. She's also still concerned, but is the sweetest woman alive. She was saying how frustrated she was not being able to figure it out and how sorry she was that she wasn't able to yet. Wants me to call her and check in with her after I hear back from my endocrinologist. Said my endocrinologist was great, but she would consider sending me into our nearby city known with renown hospitals for another opinion if needed. She's really, really determined to figure it out. She does not think it's psychological.

    I'll upload if/when I learn anything more.

  • Hi megan691 I too had a mysterious weight loss of 28 lbs in May 2014 and thought I might have cancer. I didn't get to see Dr till much later and found I had low(normal) Hg and B12. Dr's avoided any appropriate treatment but I started to dose oral in 2015 B12 D3 K2 Osteo and a good tonic also sea salt skin washes and multivitamins. I seem to have recovered from the fatigue and am continueing on discovery trail...now having MRI brain scan. Last week found I have raised IGG. Most often the basic diet is the key and avoiding any of the likely culprits...glutens,dairy, etc. However lots of people are now trying the Functionalist medicos for a more comprehensive approach. Hope all turns out okay.

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