Saw 2nd Endo Today

Ok so I did wind up fasting (no coffee until 4:00 this afternoon!) and saw my second Endo this morning at 9:45. I had sent a fax outlining my symptoms along with my previous bloodwork. Dr did test for testing metabolic rate and it showed that I have been eating 430 calories LESS than what I burn, so Dr said for what I eat, I should be 145 pounds, not the 193 I weighed in at today. He knows from this test that I am not to blame for my weight; there is something metabolic going on! Hallelujah! I've been vindicated! Feel like telling my idiot GP to screw off for saying I should "eat less and hit the gym." This Dr says that would do NOTHING since I'm already eating like I'm on a diet! Nurse Practitioner also thinks my Anti-TPO Results from last Endo's blood work was borderline (result was 8 and reference range was <9) so they are thinking it may be Hashi's. NP said if it was borderline in December it should be out of range now. Dr also thinks it could be pre-diabetes (dysmetabolism syndrome) or insulin resistance, which I don't believe at all, but I went for the 2 hour glucose tolerance test to rule that out anyway. That's when they did 6 different blood panels; unfortunately it was 1:25 PM when it was taken, but I didn't have any control over that. These are the tests:

1. thyroid (TSH, FT3, T3 UPTAKE, FT4, Anti-TPO, Anti-TBG, Calcitonin),

2. VitD25-OH and B-12

Dr said both were low last time and are probably responsible for a lot of the symptoms I've been experiencing. He said he never wants my Vit D that low again (19 one time and 22 another time - reference range 30-100). Unlike my idiot GP who told me to take 2,000 IU a day, he has prescribed VitD2 1.25 MG (50,000 Units) brand name Calciferol, Drisdol. One pill a week until I get into the ideal range. He said B-12 being low (was 240 - reference range 200-1100) was indicative of thyroid problem. Again, my idiot GP said my B-12 was FINE, since it was not below the range. UUGH!

3. HBA1C and CPEPTIDE

4. Cortisol and ACTH

5. Sex hormones: LH, FSH, Estrogen, Testosterone (free and total), DHEA and Prolactin

6. PTH and Calcium

Lab says results will be back on Friday... guess we'll see! Next Endo appt is 4/18 to discuss results and possible treatment.

So, anyone had a Anti-TPO result that was borderline the first time it was tested -- then what happened the 2nd time? Did your numbers skyrocket? Did they just barely go up? Or what??

Thanks for your input!

Best,

Melissa

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34 Replies

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  • Hi Melissa

    Good for you persevering and getting your health sorted out!! I'm quite new to this forum but others will give you advice re blood results . Take care xx

  • So glad you're getting some proper tests and attention to your plight

    My TPO antibodies were astronomical on diagnosis three years ago but regularly go right down to nothing so low isn't indicative of anything. High tells you it's Hashimoto's. I don't find a correlation between high TPO and feeling rubbish.

    I am guessing you are not in the UK. I don't think many people here are so thorough.

    Also, I hope they don't give you a diagnosis of Hashimoto's then just give you levothyroxine and tell you you'll be fine.

    Fine effort of diagnosis though, very encouraging.

  • Glad someone knew the subject

    make sure louise.ronerts@throiduk.org.uk knows who this miracle endo is

  • The correct email address is:

    louise.roberts@thyroiduk.org.uk

  • Oops sorry

  • Hi Melissa, so glad that you've managed to see some good specialists and get a proper diagnosis, it can only get better from now on. I'm fine on Levothyroxine, but just in case, keep a note book and record how you're feeling every day, and any symptoms which hang on or come back. Good luck and all the best 😊

  • Good for you. The tests are v thorough. Cortisol and dhea if out of line also make a massive difference.

    Given how low your results have been no wonder you have not been well. Your gp needs a massive kick- preferably out of medicine.

    Good luck for the rest of the results.

  • What is the metabolic rate test? I think I am in the same boat as you. I row for 45 mins a day, eat about 1300-1400 calories and I weigh 183 and can't lose a lb. Making me crazy.

  • It was a machine you breathe into for about 10 minutes, then you get a print out of how much your body burns a day, versus your daily average of calories you take in (the average comes from over a month). Pretty amazing stuff. Can't even imagine how much he'll bill my insurance for, for that test!

  • So the 2 hour glucose tolerance test ruled out pre/diabetes / insulin resistance? The HbA1c will give a better view of your blood sugar levels over a couple of months.

    And you're waiting for probable diagnoses for Hypothyroid / Hashi's.

    Hypothyroidism can disrupt glucose metabolism so the two can go hand in hand.

    "Why Can Insulin Resistance Be a Natural Consequence of Thyroid Dysfunction?" hindawi.com/journals/jtr/20...

    There are quite a few things you can do to help with the condition / symptoms. If you check back here lots of people will give you their tips and advice.

    For instance... you might want to go de-caff as caffeine can decrease insulin sensitivity by up to 15%

    "Caffeine can decrease insulin sensitivity in humans." ncbi.nlm.nih.gov/pubmed/118...

    You could also get your cholesterol levels / lipid panel checked, as they are often high with underactive thyroid.

    All the best.

  • Yes, he told me to go for the 2 hour glucose tolerance test and ran the A1C... I'm praying he's wrong though. I have ALL the symptoms of Hashi's/hypothyroidism except for constipation (I'm a vegetarian- maybe if I did eat meat I would be constipated) so I'm hoping that something shows this time. The joint aches and exhaustion are getting worse and debilitating!

    My cholesterol was fine the one time I actually fasted. Was 180. The last time it was done was last month (February) - my insurance company came to my job to do health screenings and I had drank two large cups of coffee with half and half and sugar, and it was 200. This blood test last Tuesday I fasted, but I don't think they ran cholesterol...

  • Brilliant, lucky you to find a good endo. So glad Vit D and B12 are being sorted as those levels would have made you feel shocking.

    Yes tell GP to screw off, that made me laugh 😂

    Antibodies show an active attack on Thyroid when there is a lot of inflammation so I guess you're on track. Are you eating gluten in your diet? If you are and not reacting then maybe not Hashis.

    On the other hand some people have Hashis without antibodies.

    Keep up whatever you're doing and with other vitamins and test results sorted you should be doing well 😀

    Where are you and who was endo?

  • I'm in NY, in the US. I can't wait for my results. I just want to move on and start feeling better, no matter what it is! I feel like I'm progressively getting worse, and sometimes it REALLY hard to keep holding on! Honestly, before I saw this Dr I was losing all hope, and I was starting to feel suicidal. I was thinking everyday about killing myself. I have always been so mentally stable, this was shocking but it's not easy suffering in silence and knowing everyone is talking about me and how much weight I've gained!

  • Really sorry that you are/were feeling so low, it's so not easy and people just don't get how ill we feel.

    Hang on in there it WILL get better. We just need to take charge of our own health.

    Now I'm self medicating I'm so much better,completely given up on Drs they just are not knowledgable enough re the thyroid plus are not going to prescribe what we need due to funding.

    Have you thought about NDT? Natural Dessicated thyroid.

    Talk to your endo about this as T3 is what a lot of us really need. T4 is a prohormone but T3 is the active hormone so if you don't convert T4 to T3 like so many you won't ever get better. Plus you get T2 and T1 so far more natural all round.

    Sounds like this rndo is good with all your other tests so avoid person to talk to.

    Will be interesting to see what your sex hormones and adrenals come back with.

    Epstein bar virus, Lyme, H pylori etc all have big links with Hashimotos too.

    Research leaky gut Chris Kresser website good for this.

    Dr Datis Khazzarian has brilliant hashi books that are easy to understand. Also has a website.

    Susan Blum md Immune System Recovery Plan is worth reading if you want to know about diet and Hashimotos

    Amy Myers website good too although she sells a lot of stuff so don't get too sucked in.

    Things that help me;

    Gluten/casein (in cows milk) free ok with goat milk butter, cheese etcAlmond milk is delicious too

    Bone broth

    Great Lakes Collagen powder

    Turmeric & cinnamon in a smoothie every morning with banana, blueberries, powdered B12, Rhidiola drops also the collagen powder.

    Vit D, B12

    If I experience sleep difficulties then I add magnesium.

    Best to test before you take.

    NDT I take Thyroid S from Thailand

    As you're in the states though there is naturethroid and one I'd really like to try but can't remember name so I'll get back to you on that!

    Good luck. X

  • just so you know, Ive had very similar symptoms to yours only my phosiciams wont test for anti tpo at all and I get scolded for low vitamin d. however, whenever I try to take vitamin d in any capacity, I end up waking up in the middle of the night like my body cant settle down. Im also strugglimg with hypoglycemia and had it confirmed in a hypoglycemia 5 hour panel. Im a little worried because I was reading on another board you can get that specific reaction when you have hyperparathyroidism and that catching this problem is difficult.

  • My god! Who is this endo, and where are they? The Endo's at my local hospital are dire

  • This Endo was actually referred to me by a friend bc I was growing more and more disgusted with being told I was "fine" because my thyroid results were within the range! She said he was very helpful and would help me to find out what my problem was. Fortunately I have good health insurance. I am in New York, in the USA so I think we have more options available - we just have to weed through all the Dr's that don't know their as* from their elbow. We seem to have plenty of those!

  • Bit too far for me... I'm in the UK lol 😂

  • We're buggered here!! 😂 Useless the lot of them! Plus no funding we'll never get what we need😩

  • Well for your sake, I certainly hope that's not true. I know what it's like to feel helpless and hopeless. Now I understand why so many of you self-medicate. It's completely out of necessity. That's just horrible if you ask me! Gov't subsidized health care or not, you should be listened to and treated! How much could it cost??

  • It doesn't cost enough! That's why they want to just give us Levo, far more money in it, then offer anti depressants and statins two more money makers. NHS is just a business now not about what's best for the patient at all. 😫😡

  • My TPObs were 6 when first tested, ( told I didn't have hashis) 2 years later 80, then have gradually crept up last was 200 odd

  • Now THAT's the info I was looking for! Dr and Nurse Practitioner said yesterday the speed of which it accelerates can be different from person to person, but I was curious what happened with other people's numbers. I guess the NP is right too about the fact that the number will only go up from 8? It won't go back down unless treated, right? So I haven't done all my research yet, but the treatment is just Levo for this? Eventually my immune antibodies will kill off the thyroid, right? I know I've read here a million times that a gluten free diet will help. This will help stop the thyroid from being destroyed? Will I need less Levo then? On the conventional medical websites it says that diet has not been proven to make a difference with Hashimoto's...

  • They seldom treat with levo, unless your shown ( in their eyes) to be "clinically " hypothyroid, I am fighting this ATM, not being treated

  • I've been reading that that's the only treatment for Hashi's is with Levo... why wouldn't they treat you if your antibodies ate over the reference range and you have symptoms? Is if bc you're in the U.K. and the NHS is negligent to sufferers? In the US, Dr's seem to be all about the bloodwork being out the reference range (TSH and FT4). From what I've read, with Hashi's you can have high antibodies and still have in-range (yet low) values. That would explain a lot bc my TSH and FT4 values have been consistently low yet in-range; my antibodies were 8 and reference range was <9 so they're saying I was borderline in December. I feel so sorry for you, that you have to fight to be treated. I kind of understand bc before this, my GP and my first Endo wouldn't DO anything besides tell me my Vit D was low! Meanwhile my symptoms have been increasing and getting stronger, so I was compelled to pursue going to a different Dr in order to get some type of answer! I am not normally the type to go to all these Dr's...

  • I had the exact same experience 30 years ago with an Endo here in the states. It was Hashimoto's, and it gradually became worse - mostly because it was only recently that we knew about leaky gut, gluten, and oh yes, especially Vitamin D.

    I am so glad to hear of someone getting the right info and going to an Endo in the UK! For some reason, there seems to be a reluctance / hesitancy to go to the Endo's. Until we get closer to the correct diagnosis how can we possibly know the enemy? (Whether it be gluten, etc.) If we don't know what to fight how can we ever win?

    Stick with that Endo - they are giving you great nutritional weapons. Congratulations on taking your own health in hand and charging forward. You may even be on the road to a cure.

  • I have Hashimotos. Initially picked up over 20 years ago by vigilant GP - my TSH not significantly raised but both antibodies were unbelievably high.

    More than 20 years of dire health & treatment just replacing thyroid hormones & no consideration or treatment of leaky gut, antibodies & immunity

    Went gluten free last year - after joining & learning on here realising total importance of leaky gut & diet connection.

    Antibodies have fallen slowly & steadily over 10 months from 165, now 81.

    Also I strictly avoid all soya including soya lecithin

    Like most with Hashimotos I also had low vitamin D (never tested by GP) - but couldn't tolerate vitamin D supplements.

    Recently introduced Vitamin-D lamp instead with astonishing positive results. So much so I have found I have needed to reduce Levo slightly (125mcg down to 112mcg) - at long last making progress

  • I think my Dr is aware of leaky gut and absorption problems, because the NP even mentioned to me about possible B-12 shots bc she said some people can't take it by mouth due to stomach issues and absorption. I think he's pretty informed from what I can see -- only bad thing is he judges thyroid issues by TSH only he said, not FT4 or FT3... I was like "Oh no!" But I will see how my tests come out and what he says, I don't want to pre-judge by that alone. He seems pretty knowledgeable so far... I'll give him a chance and see. Both my TSH and FT4 have been very low in the range, so we shall see how he handles it and what other tests show. He certain cast a wide enough net. Let's see what he catches in it.

  • congratulations on finding someone who can help. I'm a little worried about the d2 though, calcefarol has added calcium and its not usually needed, you may be better looking at vit d3 which is better and also vit k2 mk7 and you may also need magnisium? when you increase your vit d levels it becomes more efficient at remiving and utilising calcium from your foods, therefore extra calcium isn't needed, the vit k2 and mag helps take the calcium to the bones and teeth so it doesn't hang around in the blood. These are just my thoughts, please do research for yourself to check which would be the best option for your circumstances

  • That is a good point. I know he's doing that to increase my D levels quickly. He said it would take many months of taking the 4,000 IU to get to the ideal range, bc I was so far below the reference range. I think after I get there, I'll be taking the D3 daily -- but I will certainly ask him next time I see him and will buy the K2 /7 the next time I'm in the vitamin store. Thank you so much god your input! The people on the forum are simply the best and SOOOO knowledgeable! Thank you!! :-)

  • vit d2 will not raise you vit d level with any speed at all, you need vit d3 😀

  • For now, I just bought K2, MK7 with coconut oil since it needs a fat to be soluble. Hopefully this will help since I was prescribed the D2. I don't think he will keep me on it for long; I think it's just to raise my levels into the desired range bc it says it will be used sporadically.

  • nope you need vitd3 to raise your vit d levels, vitd2 prescribed by a gp are like taking smarties. You will possibly need vit d3 suppliments for life unless you live in a very sunny climate. Once you are optimal ( not just in range) then you will need to drop to a maintainence dose 😀

  • So what the Endo prescribed will not help at all? Then why prescribe it?? I'm so confused... I need D3 in addition to the prescription D (calciferol)?

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