My Doctor is Ignoring My Concerns

My Doctor is Ignoring My Concerns

Good Day,

For two years now, I have been telling my doctor that something is not right with me and that it is hormonal because, two years ago I suddenly gained 20kgs in a span of 6 months. My breasts go bigger, I became very weak, dizzy, constipated, unhappy and down, and experience symptoms of Hypothyroidism. I also have iron deficiency, and all my doctor does is give me iron transfusions, which never help but only for a few months before my Ferritin levels dip again and I am rendered bed ridden. I had the last iron transfusion on 14th Oct 2016.

How he keeps ignoring my symptoms is because my tests are always in the normal range. I now insisted on being referred to an endocrinologist and I have an appointment on the 23rd of Feb 2017. I live in Switzerland btw.

I would like some guidance as to how I am supposed to convince these people that something IS in fact wrong, and that dismissing my symptoms based on the fact that my test results are in the normal range, is unfair. What am I supposed to do to be taken seriously? What should I highlight to the doctors if once again I get told that nothing is wrong with me when a lot is in fact wrong?

My most recent blood tests are below. They are in German but they should make sense.

Thank you.

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37 Replies

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  • Well, you aren't overtly hypo, so it would be difficult to find a doctor capable of understanding that something might be wrong.

    Your TSH is too high, and shows that your thyroid is struggling. And your FT3 is very low, and does point to a possible conversion problem. But it's difficult to find a doctor that takes conversion problems seriously, too.

    Have you had your antibodies tested? If not, that might be the best next move. And, also your nutrients. If your ferritin is so low, other nutrients could be low, too, which will make you feel ill and possibly affect your conversion. So, best to ask for vit D, vit B12 and folate - and any others you can get away with! You could very well have B12 deficiency, which will cause hypo-like symptoms.

  • Thank you for the prompt reply. Yes, I see what you mean. It might not give out red flags for a GP.

    They did the Vitamin D3 and Vitamin B12 too, as I see it listed on the test results, but I think they are normal too.

    I have not done any antibodies test yet. I will be sure to ask the endocrinologist when I see them in February. I appreciate this because it helps me help my doctors.

  • If you posted your results for D3 and B12, someone here could tell you if they're 'normal'. :) Although, actually, we don't like that word, here. 'Normal' usually just means 'in range', and as the ranges are so vast, they can't all be 'normal'! What we like is 'optimal'. Vit D3 is optimal around 100. Vit B12 somewhere over 500 - but definitely not below 500!

  • I see. Then the results are terribly low.

    The image above says 43.9, but the test results didn't specify the "normal" ranges. And Vitamin B12 is 468, which is below 500. :( Thank you. At least with these, I can fix it myself. I'm going to the pharmacy today!

    Yes, and "normal" is not a very good word. I understand. :)

  • Well, make sure you get the right types of vitamin. For vit B12, you want sublingual methylcobalamin, nothing else. 1000 mcg. And, with that, you need a B complex, to keep the Bs balanced. The D is D3, not D2. And you don't want the one with calcium.

  • I'm already printing this reply to take with me to the pharmacy. :) Thank you.

  • Oh, and I was already taking Vitamin D3 (it's in the fridge) but I was not consistent about taking it. I will now make it a priority. The Vitamin B Complex I take daily is from BioCare (a UK company) and the dosage of Vitamin B12 per pill is 50mcg and it is Hydroxycobalamine, so I will make the necessary changes. Thank you so much. You have been very helpful. <3

  • Well, that B complex is fine. But, you also need the sublingual methylcobalamin. You need it sublingual because it's absorbed better, and methylcobalamin is the only sublingual one they do - not that's not completely correct, but that's what you want at the moment. The B complex AND the sublingual methylcobalamin. :)

  • aaah. I understand. I need to take them both. Noted. Thank you.

  • I went to the pharmacy to get the Sublingual Methylcobalamin and they said that they do not have it in the Swiss market. Interesting. Anyway, I will see where I can get it from. I will look around in other countries where I have contacts. Thank you.

  • Try Amazon - UK or F - they have it. I somehow didn't think you'd get it in the pharmacy.

  • Hi Greygoose, could this person's conversion problems be caused by low adrenal function? I know it can impact on the 'uptake' of medicines. But I admit I struggle to get my head around all the different levels and what they mean.

  • Possibly. But l don't think we have any cortisol results on that list.

  • No, I'm just wondering if it something else that is worth checking? I went for nearly 35 years struggling to find it was, at least, partially, the adrenal fatigue impacting on the uptake of the medication. Just a thought.

  • Well, one step at a time. And, as the OP's nutrients are so low, the obvious first step is to optimise those. :)

  • I agree but just something to consider, especially as if it is adrenal, they will struggle getting anything to work to its best.

  • Thrombozyten = Thrombocytes = another name for Platelets

    Your platelet count is very high. A bit of googling comes up with this :

    healthline.com/health/prima...

    labtestsonline.org.uk/under...

    I'm sure there must be loads of other links. I've never heard of thrombocythemia before, so can't offer any realistic help, sorry.

  • Thank you. I will also Google about this further. Thanks for the links. :) I suspect that it has to do with the quality of my blood cells. I have heavy menstruation, which leaves me with low Ferritin, or I thought that was the cause. Upon research, I discovered that, hypothyroidism also affects the absorption of iron and is linked to heavy bleeding. So... I don't know how, but I suspect that this is all connected. I will definitely look into this as I too had not heard of it until today when I got these results.

  • Ferritin : This needs to be mid-range or a little bit over - about 80 - 100, possibly a little higher with the reference range you have been given. Low ferritin will make people feel exhausted.

    I took ferrous fumarate 210mg, one tablet, three times a day, first of all via prescription, but then I started buying my own. It comes in a box of 84 tablets. (Obviously this info applies to people in the UK, and dose sizes and box sizes will probably be different for you.) This gives a daily dose of 3 x 69mg = 207mg of elemental (pure) iron per day, and I would consider this to be the maximum safe dose. It is the amount of iron you take in a supplement which is important, but many people can't tolerate iron supplements very well and have to take lower doses of iron, which may slow down improvement.

    Some other iron supplements :

    Ferrous sulfate - usually comes in a dose similar to ferrous fumarate

    Ferrous gluconate - 35mg pure iron per pill

    Ferrous bisglycinate (aka Gentle Iron) - about 20mg - 25mg per pill

    For meat eaters - Eating liver a couple of times a week will also raise iron levels, and can be eaten in addition to taking other iron supplements.

    Well worth reading - written by helvella, one of the admins on here :

    dl.dropboxusercontent.com/u...

    With each dose of iron, also take 500mg - 1000mg of vitamin C. Iron supplements cause constipation in many people, high dose vitamin C causes diarrhoea. Adjust the dose of vitamin C to keep yourself comfortable. Vitamin C also helps the body to absorb iron.

  • Once you have iron transfusions are you just allowed to rot until your iron and ferritin drop low again?

    It would seem sensible for you to supplement to keep yourself going between transfusions.

  • I agree. But my doctor said iron supplements won't help my Ferritin levels when I asked him for it. So, I am going to insist this time, that he gives me something, or helps me find something that will help my Ferritin levels stay optimal. His thing is that, my HB is normal, so I shouldn't take supplements. I should get another doctor, right? LOL

  • What? Iron supplements won't help ferritin?

    That is nuts. Ferritin is a molecule that stores iron - that is its sole purpose - to be a store. If you take iron it will raise ferritin.

    There are exceptions but I think they might be rare. Some people can take iron and it just raises serum iron. But I've only come across it once. I'm guessing it is a genetic fault.

  • Hmmm... The way he explained it to me, he said the blood cells are too small and need to grow or develop over time, and that pumping iron in me won't make it develop faster. Maybe it is a language barrier (I'm english speaking and he is German speaking), but I am getting confused now.

    I was under the impression that HB is the stuff I get from iron supplements like iron Sulphate. And that Ferritin is something totally different that I can not get from iron supplements as Ferritin is what stores the iron I would take in iron supplements.

    I need to read more about this, it seems.

  • You might have to hunt about a bit to find bits which are relevant to you, but I've found this website useful :

    irondisorders.org/

    And a simpler site, but a very good link :

    rt3-adrenals.org/iron.html

  • Aaawww. Thank you so much. You are incredibly helpful. I am bookmarking it all so that I can sit down and comb through everything later. :)

  • I'm going to print your reply and take it to the pharmacy with me. Anyway, I am already going to another iron transfusion on Monday (which is very expensive) so supplementing my iron with something other than iron sulphate is recommended for people with low Ferritin but Haemoglobin (HB) that is within the "normal" range, although I am just skating on the line between normal and low as far as my HB is concerned.

    Upon Googling yesterday, I discovered that I can't take too much iron so your guidelines are helpful as to what type of dosage I should work with. In fact, I am going to ask my GP for a prescription for the iron supplement that might help me prolong the time between iron transfusions. Thanks a mil. :)

  • I would disagree about it not being possible to overdose on iron, although someone who loses it as quickly as you might find it difficult.

    Iron is actually very poisonous in overdose under normal circumstances.

    amazon.co.uk/Ferrous-Fumara...

    If you can't get ferrous fumarate where you live, but can order from other countries, then the above might be useful.

    People have different tolerance levels for iron supplements. Don't buy lots of high dose supplements to start with, because you might not tolerate them.

  • And you said that you needed a prescription for the Ferrous Fumarate? Or is it over the counter?

  • Doctors do prescribe ferrous fumarate and other high dose iron supplements. But it is possible to get it (legally) without a prescription. It is up to the pharmacist's discretion whether or not they supply what you ask for. You can't go to a supermarket and buy it.

    It is also possible to buy it online.

  • I got the Ferrous Fumarate at the pharmacy. And I also got the Vitamin C to take with it. Thanks a mil. :)

  • What came out to me was the rapid weight gain - are you still gaining weight, or are you able to lose weight? Has your cortisol levels ever been tested. alot of the symptoms you have are similar to Cushing's syndrome. I hope it isn't but it may be worth getting your cortisol levels checked but best down at 8-9am. have to say I'm very jealous of you living in Switzerland - I love the country & have visited several times over the years, about's are you?

  • Hi,

    Thank you for your reply.

    I managed to lose 12 of those 20 so kgs, from March 2016 to now, by not eating much, through a diet system called Metabolic Balance, but I was so miserable from being hungry all the time. Anyway, I didn't stop the diet, I just stopped losing weight, and I have been on a weight plateaux for the last 3 months, even when I have cranked up gym to high levels. So, now my weight is not budging.

    I have never checked my cortisol levels. I will ask the endocrinologist to look at that too next month. I will also read about Cushing's Syndrome a bit more, because it might explain the weird hair changes, acne, and so on.

    I live in Schaffhausen near the Rhine Falls, about 41km from Zürich. :)

  • Change you doctor.

  • I had similar trouble but my readings we only slightly under-active. Wait to see your Endo Consultant and see what he or she has to say. Gp's are not aware of all the signs of an Under Active Thyroid they are not trained, it is ore complicated than you realise. I dont convert T4 to T3, so I haave to take T3 on its own, now they are stopping GP's prescribing T3 & it has to be prescribed by a Enndo Consultant if its really necessary. I was a wreck before I was prescribed it so you know how I feel now. Thankfully I have discovered I can get it in Greece. Keep your chin up and keep reading.

  • Slight under-activity, with symptoms, can be a sign of low adrenal function and could be impacting on the uptake, hence the slightly higher readings, hormone not being 'used' as it should, so stays in system. (This is what I have and am experiencing) I too, am on t3 only, for some years now. I hope you can fight to keep your t3. I was hoping that, because I am on t3 only, that is the reason my gp is not stopping it, wondering if it is just a matter of time. But can't take t4. I just don't know how Dr can get away with stopping medicine that is actually working for someone, when other medicine have proved not to work. To me, they know what they are doing and it smacks of negligence...maybe that is the way forward, we should all get together and sue, en masse!! I've previously said on here that if other professionals were failing their clientele, be they students, patients or whatever, they would not last long in their jobs. Don't Dr's take an oath, something about 'first do no harm...'. And now refusing to prescribe medicine that they know people need?? Especially when it has been proven that the medicine is both required and working? And offering no viable alternative in return.... Failing at their job! And at the same time they disapprove of people self medicating...but what option are we left with....

  • Hi there...oh my goodness..you sound just like me..l could barely move..so exhausted all the time and also have hypothyroidism but he thinks l'm being lazy, ignoring the fact that I have blown into a size 16 from size 6 to size 8. All my life l have been very small and petite..l ve kids 15 and 11. I was 9 month's pregnant and size 14 straight away l did loose the weight, am already not vegetarian but none meat eater. We eat tons of vegetables and chicken fish. My doctor thinks l need to excersize more..eventhough l m shattered but l drag my body like a snail..am on my feet all the time..l don't like food much so l eat very little and not much appetite either...

    Can't believe these doctors...what do we have to do for them to figure out..offcouse once they diagnosed you then you may not get the right treatment... what can I say..you are like my twin in another country..so l do know what you are going through..

    Jools 9

  • Thank you for sharing you experience. It does feel good to know that I am not alone. <3 How are you doing now?

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