Lost

Hi I am new and I feel completely lost at the moment.

I am 32 years old and I was diagnosed hypothyroid in 2013. I have had trouble with my dose. I have been started Levothyroxine, taken off it, put back on it again, had it increased, had it reduced, had T3 added, had it taken away, had my Levothyroxine reduced again and I am starting to have enough of this constant chopping and changing.

I want to feel well again and my endo doesn't seem to understand it at all and it is bringing me to tears. I have had trouble concentrating and focusing in my job and my manager did not understand I have hypothyroidism and told me I didn't look the sort to have it. I felt that she hated my guts and I resigned from her company. She still sends me emails asking for my P45 but we left on such bad terms that a) I don't feel comfortable sending her it and b) I have moved on a lot since then by taking up a short course which I passed in and being in a temporary job that I am doing well in and I may possibly get taken on permanently since I am picking up tasks really quickly and getting invited to training courses. I am also getting married next year and I want to lose the puffiness in my eyes and the extra weight that I have gained so I can fit into my size 6 dress. I am currently an 8/10 but bordering on a size 10.

The reason why I am here of course is because of how continually poorly I still feel. My periods have become more painful and heavy, so painful they wake me from sleep; dry skin all over my legs; constipation; loss of appetite; muscle cramps and spasms; dry eyes; breathlessness and sighing a lot.

I shouldn't have to go on like this and I go through each day feeling so awful. If anyone could advise I would be grateful and thank you for reading/listening.

TSH 0.05 (0.2 - 4.2)

Free T4 20.8 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Thyroid peroxidase antibody 475.3 (<34)

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24 Replies

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  • Hi LaurenWhite, welcome to the forum.

    Why did your endo stop your T3? I can guess, but tell me anyway. :) Because it's obvious that you don't convert well. Your T3 is too low, and that's why you're having all these symptoms. If your doctor won't reinstate it, you should consider buying your own.

    That said, some of your symptoms are more than likely due to low nutrients. Have you had your vit D, vit B12, folate and ferritin tested? If not, ask your GP to do them. And, have you had your antibodies tested? If not, ask for them, too. The more information you get on your hormonal and nutritional status, the better. :)

  • I had T3 stopped because my endo told me it was dangerous. The previous endo had no trouble prescribing me it though. I have vitamins and minerals tested, do I post them? Thanks

  • Well, I don't know if he really believes that, but probably not. He's just scaring you off it because it's so expensive and the NHS is trying to cut down on costs. They want everyone off T3, and they are not above lying to achieve their aims!

    But, ask yourself this: why would the body make a substance that was dangerous to it? The thyroid gland makes T4 and T3, and more T3 is converted from T4 as and when it is needed (in a healthy person). Why would the body do that it T3 is going to give it a heart attack and destroy it's bones? Do all endos actually believe that all bodies are suicidal? I don't think so. And they lie about so many other things that why should be believe them on this one? lol

    If you see him again ask him, if T3 is so dangerous, how does he intend to make you well without it? What is his solutions to bad conversion and sub-optimal levels of T3. Even more importantly, where is his proof that T3 is dangerous? Just watch him squirm! Or go red in the face and start blustering and shouting. Or, perhaps not. Not much fun. Better by far to just buy your own T3. :)

  • They seem to be so much more proficient in obfuscation than thyroid health. Perhaps 99% of endos take this as a module?

  • LauraWhite my manager did not understand I have hypothyroidism and told me I didn't look the sort to have it.

    Jeez, that sort of remark really pee's me off. My answer would be "When did you get your medical qualification?". Nobody knows what it's like to have hypothyroidism unless they have it themselves or someone close to them has it and they can see how it affects them. There is no 'look' that defines someone with hypothyroidism unless they are undiagnosed and have some of the familiar physical symptoms.

    **

    What is your current dose of Levo? Was it reduced because of these results

    TSH 0.05 (0.2 - 4.2)

    Free T4 20.8 (12 - 22)

    Free T3 4.1 (3.1 - 6.8)

    Thyroid peroxidase antibody 475.3 (<34)

    or are these new results since being on the reduced dose?

    **

    Thyroid peroxidase antibody 475.3 (<34)

    This is part of your problem. Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

    I'm thinking that your doctor doesn't understand Hashi's and it's fluctuations, or that he doesn't attach any importance to antibodies and what they do. Many doctors and endos dismiss them as unimportant. I think your dose changes have been made because of temporary hypo to hyper to hypo swings that Hashi's causes, and I'm guessing that you've had far bigger reductions in dose that was possibly needed.

    Do you have some results of when you were on other doses, with/without T3? If you post some, with doses and say why the dose was changed, we can see why prompted dose changes.

    **

    Also, Hashi's also means that there could very well be gut/absorption problems and that usually means low or deficient nutrients. Have you had the following tested, if so please post results with ranges for comment, and say if you are supplementing with anything and what dose:

    Vit D

    B12

    Folate

    Ferritin

    Iron Panel/Full blood count

    **

    You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

    Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

    Read and learn about Hashi's so that you can help yourself, because you're not getting any help from your doctors:

    Gluten/thyroid connection: chriskresser.com/the-gluten...

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

    thyroiduk.org.uk/tuk/about_...

  • My current dose is 50mcg levothyroxine, I made the mistake of reducing it too much. I was taking 150mcg before that and 150mcg levothyroxine with 10mcg T3 added before that. I have results of vitamins and minerals, do I post them? Thanks

  • Yes, post your other results.

    Did you reduce your Levo then, I thought you said you 'had it reduced'.

  • Sorry, yes on other occasions I had it reduced by the endo and again by the GP but after looking into low cortisol which I have got I reduced it on my own to 50mcg.

  • So are your doctors looking into your low cortisol? This has cropped up a few times recently.

  • No I did a private saliva test.

  • So what are you doing about your low cortisol?

  • Nothing at the moment, I was hoping Genova would have advised me what to do about it. But they asked me to retest in 3 months time.

  • Genova wont tell you. They don't deal with the public, they do tests through 'practioners' (Thyroid UK would have been your practioner for the purpose of getting the test done). They advise you to speak to your practioner.

    Certainly, you can retest in 3 months time if you don't supplement anything and see how things are then. A struggling thyroid will make adrenals worse though. Thyroid, adrenals and sex hormones all work together.

    Or you can check out Dr Myhill's website for interpreting adrenal tests, assuming that DHEA was tested too

    drmyhill.co.uk/wiki/Adrenal...

  • Thanks yes DHEA was checked and it was below range. I have deranged sex hormones as well, maybe supplementing vitamins and minerals is what I should be doing instead.

  • When I had mine checked, I had high, but still in range, cortisol, below range DHEA, and my sex hormones were virtually non-existent. I was consulting with a practioner at the time and she suggested supplements. So I think you are going to have to sort your adrenals and sex hormones out as well as vitamins and minerals.

  • Hello SeasideSusie, can I ask what supplements you take for poor adrenals. Thanks

  • I don't know anything about supplements for adrenal support I'm afraid, sorry. My practioner suggested something for my particular problem and I don't have any other experience about adrenals to be able to help.

  • I really wanted to ask my manager at the time how would she know I wasn't hypothyroid but I was so upset at the time I couldn't ask her.

  • Hi Lauren, very good advice given so I'll just give some emotional support. It's abusive when people judge you for no reason. If you've gained weight and have puffy facial feature, how can your boss say you must be all right? Every part of your body that needs energy is affected by low thyroid and by that I mean low FT3, so that is every part of your body since every cell needs thyroid hormone. Every cell also needs D3.

    Your gut has been affected and that shows up as an autoimmune condition and both members mentioned gluten which seems to be a trigger. It's a long haul but if you can avoid all gluten and maybe even grains for a while you may feel results but in the meantime your gut has lost some of its capacity to breakdown and gain the nutrition from your food. This cascades into all sorts of deficiencies. You need to add acid in order to extract those nutrients, like B12, iron, folate and amino acids. The body needs 90 different nutrients.

    It's a shame you have lost those years but you can improve and be ready for your special day.

  • Hi I gained weight soon after I resigned from her company but have had puffy eyes for years. I told her my ankles were puffy, too, and she said that was likely dehydration not thyroid. I felt like asking her is she a doctor but I stopped myself from asking her that.Thanks

  • New to this group..after 15 years being misdiagnosed (When j knew it was thyroid) I have finally been told I have an autoimmune disease which is thyroid related. We test diff in the United States (eastern vs western.) I'm curious what your doctors prescribe over there? In us they have me in D3 and another supplement along with trying to live paleo lifestyle.

  • May be best to post this as a question rather than on here as your post here might be lost. That way you can get answers for you and you only.

  • Hi j, As Lauren suggests, you might post this as a separate post since others may not read your post under Lauren's heading. I'm in the U.S. as well but have been on this blog for five years. The European ranges can differ which Stop the Thyroid Madness points out. Most of the UK members are in the NHS which has its very rigid, limited method for treating, if you want to call it treating, Hashimoto patients. It's not much better in the U.S. I have found. A real resistance to prescribing anything but Levothyroxine (T4) which needs a healthy body to convert to the other necessary thyroid hormones). Natural desiccated thyroid contains more than T4 and some do much better on that but the powers that be have a resistance to prescribing anything other than T4.

    You have a good start with D3 and Paleo but gluten seems to be a real trigger so anything with gluten should be avoided. This doctor believes in healing but it's a long road without additional hormone.

  • Hi Lauren, Please post your Vitamin and Ferritin levels either on this post or even better on a new one. People will advise. It does sound as though your are too low on something, and that could be why your body isn't converting FT4 into the FT3 you need. You are almost certainly low on Iron/Ferritin because you say you have heavy periods, breathlessness and keep sighing.

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