total confusion

So I went to see a so called top doctor in Belgium the other day, supposedly one of the best. Before going there, I had extensive labs done (blood and 24 h urine).

I feel pretty well overall, work full-time, lead a normal life...I feel tired from time to time, but who doesn't...?!

Anyway, it seems I am deficient in all major vitamins, even anemic, so now I have been prescribed B12 injections (one every week for ten weeks, then once a month). I told the doctor I take a multivitamin pill for women daily, said to contain 100% of all essential vitamins and minerals; the doctor basically dismissed all multivitamin pills as useless and not nearly potent enough.

I have been taking a pharmacy grade iron supplement called Ferograd; yet, I am seriously iron deficient and now have been prescribed iron.

I eat pretty well. Since going on supplements Diabecon and Hyponidd (after being diagnosed with insulin resistance), I have lost 15 kilograms effortlessly. The supplements make me eat less, but I eat more sensibly since they have more or less taken away my cravings for sweet and salty snacks. I tend to avoid fruit, as I have blood sugar problems, but I eat a lot of vegetables daily. I start most days with an omelett, made with three whole eggs and virgin coconut oil.

Yet, I was told my cholesterol levels are borderline low, especially the HDL cholesterol, and I need to eat more fat, especially satured fat...I was told to melt some butter and pour on vegetables such as broccoli or cauliflower.

Also, I was told to eat more red meat to get my iron levels up naturally, but also to decrease meat as my uric acid levels are elevated???

Has anyone managed to lower elevated uric acid levels naturally...I was told that, even though my kidney function is still normal, one day it will most likely be affected if I don't get my uric acid levels down.

I am low in vits A and E, but is there any way to raise them naturally?

I have been taking 5.5 grains of Erfa lately and feeling pretty well, but both FTs could be higher, so I guess I could raise it for a while and see what happens. I don't know if anyone has experienced a change in labs after Erfa moved its production from Belgium to Spain...?

TSH <0.01, so really of no interest.

Free cortisol levels at 8 am were 13 and should be at least 20. I had taken 4 mg of Medrol 24 hours before going to the lab. Now, I was prescribed hydrocortisone, but told not to take more than 5 mg at a time, because I suffer from hypertension (successfully treated with drugs). I was told to take 5 mg at 8 am and another 5 mg at lunch. However, I have read that, with HC, you should go for a full replacement dose (i.e. at least 20 mg daily), or you will just end up suppressing your own adrenals further, without replacing what you are missing...?

Strangely enough, although the supplements have taken away my cravings for snacks, and I have lost 15 kilograms since going on them, my fasting blood sugar levels remain higher than I'd like; 95 (ref 70-110, so closer to upper than lower normal limit). I don't know if there is a way to get my BS levels down further without resorting to prescription drugs like Metformin...?

I was also told that, although my periods only come every other months or so, and have since October 2015, I am not menopausal as my estrogen levels are high compared to my progesterone levels which are very low. I was also told I'm a bit young for menopause (I turned 47 last month). Nothing was prescribed, so I wonder if I should order some progesterone myself...?

After this visit, supposed to enlighten me, I feel more confused than ever....:-( How can I even stand up, move around, and feel more or less OK most of the time, if all my levels of vital hormones, vitamins, and minerals are suboptimal...?!?!

41 Replies

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  • Oh heck Anna ! I don't know much about the vitamin situation but TSH less than0.01 could be over active and I believe that can cause low HDL cholesterol. I'm definitely no expert just from my own experience with Graves. I'm sure between them members will be able to give you a bit of clarity.

  • Get your results and ranges and post them for comment.

  • I'm really confused!

    "I feel pretty well overall, work full-time, lead a normal life...I feel tired from time to time, but who doesn't...?!". So why go to the trouble and expense of seeing the doctor?

  • The reason I feel well is that I am on NDT rather than thyroxine which I took for many years with very poor results. In Belgium, only a few doctors prescribe NDT. I'd prefer not to order it online because I'd hate to always worry about customs confiscating it.

  • 5.5 grains of Erfa sounds quite a lot to me. That, combined with being deficient in so many vitamins and minerals makes me wonder if you have gut issues which are preventing you from absorbing nutrients properly.

    Maybe look at gut health and healing and see if that helps you.

  • Yup. That's what I was thinking. Or low stomach acid.

  • I would take cod liver oil with added vitamin A unless you want to eat liver or kidneys. Naturally eating well should provide some sources of vitamin A but your body has to convert it.

    (We finns eat liver quite often and food made from blood which helps with iron and vitamin A)

    Vitamin E. Well a carrot is excellent source but as E is fat soluble you need to cook the carrot and eat it with fat. So you could sautee carrots in butter!

    About hydrocortisone there are two ways I see people do it. Either divided or one dosage. No one I know had any issues with short term divided dosage. They even altered the time. Some took it at evening before bedtime or after very exhausting event like party ( no alcohol). They could dose like 5+2.5+7.5 ending up total 15 a day. But like I said it was short periods supported with all possible life style changes.

    I know some who say they started to feel better after eating kidneys and liver as it provides so much nutrients and were able to wean off hc fast.

    But if you have go take it long term I would take it once a day. Just to be on the safe side.

  • Black Pudding is good.

  • Hi Anna, I too have low cholesterol. And nobody could eat more butter, cream, eggs, and cheese than me! Maybe s/he should be looking at your liver to see why you can't make cholesterol, because that's where it's made, and has little to do with what you eat.

  • Thanks! My liver labs have been elevated this past year. I have been drinking more heavily than usual (stress-related, sick leave for burnout). But I have also been suspecting lately that I have intestinal parasites (several symptoms match). So I have ordered some stuff from Amazon to see if that helps...it seems parasites will cause your liver to work harder, which will result in elevated GOT and ALAT levels.

    My liver labs were normal until the end of 2014, so whatever has changed must have changed pretty recently.

    The Hertoghe doctors are supposedly the best in Europe. But I have to say I feel rather disappointed. Nothing new, just "keep taking your drugs and we'll meet again in six months..." sigh.

  • Yup, I know what you mean. Even the best are sorely lacking in basic knowledge, it seems.

  • hertoghe doc's are now just as bad as the rest? What a shame! Not even addressing why your immune system has gone bad.

  • Dr Lowe would have put you in t3 on its own. You are very hypothyroid. Low t3 effects blood sugar causing insulin resistance, your cholesterol is not good..you are not properly medicated. Do you have hashimotos?

    Doctors are all under the influence of the drug companies..i doubt you will have any luck with any of them except maybe functional medicine.

  • Thanks! You mean T3 only, without T4? Or synthetic T3 added to T4/NDT? NDT contains a lot of T3, but it does not seem to raise my T3 levels to where they should be. But my FT4 levels are also lowish...which makes me wonder if T4 is converted to RT3 rather than FT3...? If that is the case, clearing the excess RT3 would probably take a few months, right?

    Or are there people who stay on T3 only for life...?

    Does anyone know a place where you can order T3 only without a prescription, preferably within in the EU? If anyone knows of a reliable (intra-community) supplier of T3, could you please PM me the details?

  • yes t3 on its own. Once a patient reached 5 grains and had no improvement or was having hyper symptoms, without improvement in hypo symptoms..t4 toxicity..then he went to t3.

    yes..t3 only for life, like Dr. Lowe did. He "cured" fibromyalgia with it and his protocol.

    Of course with hashi's, you have to work on you immune system to get well. Functional medicine can get rid of hashi's, which is what i am doing now. Izabella wentz website, is where i started. Also Mark Hyman md. Meds alone didn't help my symptoms.

    I will pm you with buying info..but please look into healing your gut and thus your immune system.

  • Yes, I have tried to find som useful information, but I am not sure where to begin...what could cause absorption issues from the gut? I'd love to hear from anyone who has successfully treated these kind of symptoms!

  • contact Shaws on this forum for advise on thyroid hormone resistance. She has links to Dr. John Lowes info..he successfully treated thousands for this condition.

  • Please check out Dr Izabella Wentz facebook page. She also has undergone her own thyroid journey and wrote a book after she could not find the help she needed.

    Warm Greetings

    Breizh

  • also, ndt has very little t3 and is still mostly t4. There are many on 35-150mgs t3 and even higher..no way you could get that without going too high on the t4 in the ndt. You seem to be having absorption issues, maybe from your gut.

  • True, NDT is about 80% T4, right? I will look into adding some pure T3 to the mix.

  • Sorry, I missed your question earlier. Yes, I have Hashimoto's. At the time of original diagnosis (late 2000), my anti-TPO levels were 6500...now, with a suppressed TSH, they are within range (<60).

    When I was first put on thyroxine, in January 2001, my doctor at the time told me (and I can still quote him almost literally): "Give it three to four weeks, and you will feel like a new person, and it will be like you were never ill at all". Well, that was 15 years ago, and I am still struggling...back then, I was told I'd probably end up on 125-150 mcg of T4 daily...

    I just seem unable to get my FT3 levels up where they should be, even on high doses of NDT (5-5.5 grains). That is why I wonder if could have excessive RT3, or if the T3 in synthetic drugs is somehow easier for the body to absorb...?

    Since my FT4 levels are lowish as well, I interpret it to mean that I am either not taking enough thyroid meds to begin with (which would explain my lowish FTs), or all that T4 is going somewhere else...RT3?

    I was also prescribed hydrocortisone, and will try it to see if it makes a difference. I think that, if your cortisol levels are low, thyroid hormones won't make it into the cells, or your body won't be able to use it...?

  • One other thing I wonder about - the doctor I saw the other day said: "you are too young to be going through menopause". But am I?! I have read that it's normal to have your last period anywhere between 45 and 57 years of age, and I just turned 47...so how can I be too young...?!

  • I was diagnosed with Hashimotos 1988 half thyroid gland gone from antibody activity. Why I have interest in this community. But about your menopause concern. There is also Peri-Menopause it is the early stage/s of Menopause and part of it. Hope this gives you some help.

  • Yes, and at this stage it isn't unusual to be 'oestrogen-dominant' which I understand as having a higher ratio of oestrogen to progesterone.

  • Yes, the doctor actually said that my estrogen levels are proportionately much higher than my progesterone levels...which I guess is the same as estrogen dominant?

    In the past six months or so, I have gone from having regular and heavy periods to having my periods every other month or so. They are still very heavy, and last about a week.

    My last period was on December 22. Today, Today is February 21, and I am half expecting my period to start within the next few days...I read somewhere that if you have not had your period for six consecutive months (at my age, that is), it's unlikely that you will ever get it, and after a year without periods, you can be sure you are menopausal. My doctor said that it's very rare for a woman to stop menstruating before the age of 50, but the way things are now, I cannot imagine this going on for another three or so years...!

  • Well as the average age is apparently 51, it is possibly uncommon to stop before 50, but 'premature' menopause occurs before 40, so late 40s isn't abnormal. It depends on many environmental and genetic factors, incl ethnicity.

    This article says 'If you’re over the age of 45 and skip at least three periods in a row, that tells us that you’re going to move on to menopause relatively soon': webmd.com/menopause/feature...

  • Thank you!

    There is one thing I have been thinking about lately, though...that is something I read in one of Mary Shomon's books years ago: that peri-/menopause can wreak havoc on an already fragile endocrine system. I was diagnosed with mononucleosis at age 27, and diagnosed with Hashimoto's thyroiditis four years later...looking back, all my health problems started after I recovered from mononucleosis (which took me about three months). After that, I started gaining weight which, at first, I put down to not being able to exercise so much while feeling ill...but, once recovered, I noticed that exercise simply did not do it for me anymore...regardless of how much I exercised and watched my diet.

  • Yes, perimenopause is the new menopause. :-) Both my friend Jill and I were shocked when in our mid-30s our doctors started talking about perimenopause, like, isn't it a bit early for this? But as you say the hormones start changing far ahead of the event and can make you feel pants.

  • Hello Anna, me again....I am sure other women have stopped menstruating before they were 50 , I am one of them xx If our doctors speak in generalisations, ie women rarely stop menstruating before the age of 50, it is not helpful for our own individual journey.

    Warm Greetings

    Breizh

  • Now my confusion is even greater...yesterday, I received the copy of the lab report, and now I see the following thyroid results:

    Blood:

    FT4 15.01pmol/L (ref 9.03-23.22)

    FT3 5.88 pmol/L (ref 3.23-6.47)

    Urine (24 h):

    T3 1120 pmol/24h (ref 800-2500; should be at least 2000 according to doctor)

    T4 1380 pmol/24h (ref 550-3160; should be at least 2500 according to doctor)

    On 5.5 grains of Erfa daily. I have been considering lately switching to Thai NDT, but maybe Erfa is actually working for me...?

    So, it seems my FTs in blood look pretty well, doesn't it (I remember someone here -Marz? - saying that ideal FT3 levels are around 5.88, but I don't know which measurement units were referred to), while they look lowish in 24 h urine? However, I have no idea how much thyroid hormone levels in urine matter, as opposed to thyroid hormone levels in blood...?

  • it isn't working, if you have many hypo symptoms, no matter what your labs look like. You are supposed to raise by symptom relief, not lab values. i will answer other questions later.

  • Thank you for that, Faith63! I fear that is the main problem with all doctors, including those so called top doctors...they simply fail to understand that symptoms and labs do not necessarily coincide...:-(

  • what is even worse is that they are influenced by the drug companies, making money off of them, which influences the drugs they treat us with, not necessarily the best care...so it is all very corrupt and this is just the tip of the iceberg!

  • OK, here are a complete list of labs (reference ranges within brackets):

    vitamin B12 416 ng/L (300-835)

    uric acid 6.8 mg/dL (2.4-5.7)

    creatinine 0.65 mg/dL (0.60-1.10)

    fasting glucose 96 mg/dL (60-110) diabetic tendency according to doc

    HbA1c NGSP 5.4 % (4.0-6.0) diabetic tendency according to doc

    HbA1c IFCC 35.8 mmol/mol (20.2-42.1)

    sodium 142 mmol/L (135-145)

    potassium 3.9 mmol/L (3.3-5.7)

    calcium 2.27 mmol/L (2.05-2.65)

    phosphorus 0.70 mmol/L (0.74-1.51)

    25-hydroxy-Vit D 35.0 ug/L (30.0-60.0; optimal level: 50)

    triglycerides 98 mg/dL (30-170)

    total cholesterol 130 mg/dL (140-200)

    cholesterol HDL 50 mg/dL (40-109)

    cholesterol LDL 60 mg/dL (0-114)

    Gamma-GT 56 U/L (5-36)

    vitamin E 9.0 ug/mL (10.0.19.0)

    vitamin E/chol 6.92 mg/g (5.4-9.2)

    vitamin A 41.1 ug/dL (43-111)

    selenium 127 ug/L (90-143)

    zinc 99 ug/dL (84-135)

    copper 127 ug/dL (86-148)

    ferritine 67 ug/L (50-170)

    TSH <0.01 mU/L (0.3-4.5)

    FT3 5.88 pmol/L (3.23-6.47)

    FT4 15.01 pmol/L (9.03-23.22)

    cortisol 8am 19.2 ug/dL (7-25)

    transcortine 41 mg/L (20-50)

    free cortisol 8 am 14.1 ug/L (10-30)

    aldosterone 42 ng/L (40-300)

    FSH 1.3 IU/L (no ref)

    oestradiol 331 ng/L (no ref)

    progesterone 0.33 ug/L (no ref)

    testosterone 572 ng/L (200-800)

    free testosterone 9 ng/L (1.9-15)

    bound testosterone 98.5 % (no ref)

    S.H.B.G. 125 nmol/L (41-79)

    DHEA sulfate 169 ug/dL (65-280)

    somatomedine-C (IGF1) 169 ug/L (150-400)

    IGFBP-3 3.41 mg/L (2.75-4.28)

    IGFBP-3/IGF1 5.32 mol/mol (0-4.5)

    CEA <0.5 ug/L (0-4)

    CA 15-3 2 kU/L (0-30)

    Some of these tests, I have no idea what they are...and I don't expect anyone to go through them all. I just thought I should post the complete lab report here because there is so much expertise in this forum, and maybe someone will notice something that I would never think of...

    I have tried to translate the report from French into English, but I honestly don't know if they are all correct...

  • In this context, I have one more question (sorry to ask so many questions during one "session"...):

    I was prescribed Roussel Hydrocortisone pills, 20 mg, to take 2-3 times daily or as needed.

    Has anyone here taken HC with great results, or could OTC products just as easily give you the same results...? I am asking because I recently managed to wean off Medrol, and I'd really hesitate to go back on prescription HC unless it could really work wonders...which, in retrospect, Medrol could not. It's possible I did not take enough (4 mg daily), or did not spread it out enough, but the fact remains: it was a relief being able to go off Medrol. Therefore, I'd hesitate to ton on HC unless I knew it could really make a positive difference...so I'd appreciate any input from members having tried HC, whether this input is positive or negative!

    OK, in the interest of fairness, maybe I did need Medrol for a while, and the fact that I was able to wean off it effortlessly shows that I no longer need to be on (prescription) HC....which is another reason I'd hesitate to take HC. So...how do I know if I need prescription adrenal support, or if OTC products would work just as well...?!

  • Hi Anna, as you know I also consult with Hertoghe himself, and was put on hydrocortisone 20 mg day. It made me severely depressed. I wrote to dr with symptoms, got no reply [normal] and it was on this forum that another lady related her experiences of depression alos from taking hydrocortisone. I have never been on antidepressants but this was [life-stopping] depression. After 12 days I stopped.

    I too am extremely disappointed by the lack of thoroughness and understanding of this illness by those in Brussels who claim to be 'International Experts', charge a fortune and arrogantly assert that 'you are cured' now....there is infinitely more correct information to be found right here on this forum.

    A very big thanks to the administrators and to all members.

  • So true...I have all but given up on those so called "hormone experts". I have not seen H himself, but I have been in touch with others who have, and they have all confirmed your experience.

    Thank you also for confirming that it's not me, but that there is really a fundamental problem here, related to doctors rather than patients...sometimes, it's difficult not to blame yourself...!

    Just out of curiosity: is it true that H charges 2000€ (ca 1600 GBP) for one single session...?!

  • Hi Anna - I am not sure that age has anything to do with menopause. Some folk can start really early. I had my last period when I was 47 and my body seemed to have been preparing for it for at least 5 years!!I am now 58. Have you read any info on peri-menopause?

    Warm Greetings

    Breizh

  • Thank you so much, Breizh, it's really great to hear about the experiences of others, and to realise that I am not so strange after all...!

  • I ....I am only just realising that some very difficult, extended experiences I have had with anxiety and depression *(2 long episodes) are probably related to my thyroid as both times I have lost a huge amount of weight when ill and then put it all back on at an alarming rate when getting well. I wanted to share that I have been following Dr Izabella Wentz page on Facebook as she has gone through an amazing journey with her own thyroid health. One really interesting point she makes is that 95% of folk with hypothyroidism also have Hashimoto's syndrome. She also gives a lot of free info and has written a book.

    I am looking into foodstuffs to help promote thyroid health and pears and apples together are a pretty good source (pears in particular). There is a chap online called Medical Medium who breaks down foodstuffs into nutritional values, some of which I have never heard before - he is giving me hope and teaching me lots.

    Warm 'Greetings

    Breizh

  • Much love to you.....I also suffered from an acute B12 deficiency and was given tablets as I had had an iron injection years ago when anaemic with my first pregnancy and 30 years later I can still feel where it went in!! So no more iron injections for me,

    Do check out Dr Izabella Wentz facebook page. She has undergone her own thyroid journey and did not get the help she needed so wrote her own book. She offers a lot of free information.

    Warm Greetings and be well soon

    Deborah

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