Misdiagnosis of underactive thyroid
Posted , 12 users are following.
I'm in a very strange situation where I have been on thryoid medication for 8 years and was diagnosed with underactive thyroid when I was 19.
It has now come to light that the only reason I was diagnosed was that I was suffering with exhaustion and my Tsh was slightly abnormal. My thryoid antibodies were within normal range then and they still are now.
The doctors have been seeing how tired I am and kept increasing my meds to the point where my hair was falling out and I was suffering palpitations. I then got desperate and saw a private endocrinologist who said he was almost certain I have been over-medicated and may have never needed medication in the first place.
Has anyone else been in this situation? How is this possible and how does this happen when underactive thryoid is such a common disorder?
All the other potential vitamin deficiencies have been tested including adrenals etc and they have come back normal and I'm waiting on a thryoid ultrasound to confirm that it is healthy.
They said it may be too late to completely take me off levothyroxine (I was on 150mg and I'm now down to 75mg and dont feel any worse but equally dont feel any better). They say my thryoid may not be able to recover after eight years at such a high level of medication but they will try and reduce it as low as possible.
Is it possible for my thryoid to start making its own hormones again if I never had the disease in the first place?
I feel devastated at the amount of times I went to the doctors complaining that I've felt awful for years and it's taken me to go to a private endo to get some answers. Im worried I'll be on this toxic medication for life 
0 likes, 74 replies
amelia_02466 Tutu123
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I have searched high and low on the internet to see if anyone else is in my situation with thyroid misdiagnosis. I'm not sure if you are still on this thread, but I'm hoping you are. I'm in the same boat as you. I was diagnosed hypothyroid in 2012 seventeen days after a cat scan with iodine contrast. I've been in synthroid until this last year. I had another catscan in August and began having complications I thought were thyroid related (hot flashes, burning tingling skin on my face and hands and feet) and a killer headache, so I went to my GP who assured me it absolutely wasn't my thyroid. We decided I should try armour thyroid, which was a giant mistake for me. I felt like I wanted to jump out of my skin! I thought I was hyperthyroid for sure, but my labs were normal. I came off the synthroid due to how I was feeling and have been off for three and a half months. I am bedridden and exhausted, can barely function, but my labs are normal. My GP told me it was depression and anxiety and sent me on my way. I sought out and endocrinologist and he is putting me back on the medication, but I'm having hyper symptoms going back on. I feel so lost because I have no idea what is going on and I'm so angry about all of this. I want my life back. Four months ago I could run and lift weights. Now I can barely take care of my three year old. Have you had anything change in your labs through all of this? Are they always normal despite how you feel? I'm so interested because I was on synthroid for four years and wondering if my thyroid can't keep up.
Tutu123 amelia_02466
Posted
Hi Amelia
I can completely relate to majority of what you have been through. I tried naturethroid which is similar to armour and even on 1/4 grain I felt so on edge and my heart went crazy I had to come off it. I now take something called naturethroid which is available from the US without prescription and it's the only thing that made any difference to me. It took about four weeks to see the effects and the dosing is a little tricky but I started to feel a bit more human. The depression side is a nightmare and I have been given antidepressants unnecessarily. As soon as I adjusted to these new meds I felt completely back to normal in terms of my mood. When they drop any of my thyroid meds I feel suicidal and ive learned to recognise that this is the cause which gives me some comfort. The doctors rarely believe me though which is frustrating. Levothyroxine did nothing for me even when I was massively overdosed. If you are at a crossroads give thyrogold a go. Best decision I ever made and if you want help with dosing I would be happy to help if you needed any advice. It was a lady on this forum that introduced me to it when I was at my wits end x
Tutu123
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amelia_02466 Tutu123
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Hi Caz! Thank you for your reply! I have never heard of thyrogold. It doesn't make you feel the way naturethroid did? I am scared to death to ever try anything desicated after that. I had never experienced a panic attack before and I had them all day everyday. Scared me to death and my husband too. I actually did ok on the synthroid, but am wondering now if I might be allergic to something in it. My throat swells and I feel like I can't breathe. I experienced that the first year I was in it as well, then one day it went away. So, I think I need to try another brand. My biggest thing is my levels are normal and I'm not on meds anymore and when I go on them my symptoms get better, but I get hot with a fever, insomnia and I can't breathe. So, I am going to try to work up slowly. I will look up thyrogold! I do think I was misdiagnosed and something is going on in that regard. It's done a number on me.
Tutu123 amelia_02466
Posted
I have a feeling synthroid has a number of fillers possible lactose and/or gluten so might be worth checking if there is an alternative if that one worked for you?
Thyrogold is a bovine ndt rather than porcine (from cow rather than pig) and has a lower t3 content and higher t4. T3 tends to be the culprit for anxiety, heart palpitations etc if the person has taken too much. I too am quite sensitive to t3
barbara98940 amelia_02466
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Amelia and alternative to synthroid tablets is the thyrixine liquid though it's expensive for the NHS at £100 a bottle. I swelled up on one 5ml spoonful of one brand of this but WS OK with the TEVA brand (recently did a NHS challenge test to find this out). This will be my backup if I ever have problems with the supply of ThyroGold, as I am intolerant to all the other thyroid meds (I am intolerant to maize starch).
dlowenbehold Tutu123
Posted
An interesting fertility specialist put me on a low dose of synthroid because my t3 was a little low. That mistake ruined my life. I was never clinically hypothyroid because my tsh was in the normal range. I became anxious, but assumed it was due to the infertility. I did get pregnant, but couldn't sleep well at all after my son was born. I assumed it was motherhood stress. I felt tired and anxious all the time. My doctor even increased the dose because I was so tired.
What complicated everything was that I was diagnosed with Graves Disease which is an autoimmune overactive thyroid 15 years earlier. I had been in remission 13 years. When I was diagnosed as low thyroid and put on synthroid my readings were always in the normal range. I now know that my thyroid antibodies can impact some readings. I don't know why I can poison myself with thyroid meds for 13 years with normal test results, but that's what happened. I felt horrible, couldn't think straight and began to have symptoms of dementia. I could hardly sleep at all. I truly believe I was headed toward thyroid storm or had graves disease encephalopathy because I was such a different person. Finally, I had a high t3 reading with a new doctor I was seeing for my sleep problem. He wanted to lower my dose but at that point I had finally researched enough to believe it was the thyroid meds all along. I came off completely.
Three months later my thyroid was within range, but slightly low. I felt dramatically better. Six months later my thyroid was perfectly normal and physically I felt great. However, the cognitive damage only improved slightly. I still have memory loss, some anxiety, and difficulty organizing things. I try to be grateful it's over, but I'm scared to think that started me on the path to dementia. That makes me angry. I was a bright, career driven person who completed 3 graduate degrees. Now I can't remember what I'm doing from hour to hour.
allan91696 Tutu123
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Hi I think I also may have been misdiagnosed, I read recently thaat a "Stress Event" can trigger your tyroid going haywire (I had thyroidtoxicosis), Thyroid was over then went underactive, have been on Levothyroxine for a while, i have seen and read articles where the Thyroid condition has been reversed and people have sort of re-kick started it, I am no better for taking thyroxine - the only thing it has done is increase my weight by nearly 2 stone, I am weening myself off it, week 2 of reducing the dose next week, we dont need all these vacines and medications - (vitamins - all for those esp Vit C) eg I am 53 this year - have never had a flu jab and have never had the flu.. Just need a healthy Immune system, I would reduce your dose gradually, may take few months and try to boost your immune system as much as you can.. Research boosting your Immune system,I approached my GP (Dr) about restarting/kick starting my thyroid and he said - you dont have one left - which is a lie... God made our bodies amazing, these days we are bombarded with poisons, toxins, stressful life, we are lied to by the media and adverts - sorry getting carried away- I believe the thyroid can be restored - key to it is boosting your Immune system as much as you can - you may also have to make some life changes...
Tutu123 allan91696
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Hi Allan yes that's true that stress can cause temporary thyroid issues. And yes there is a lot of evidence that your thyroid can go back to normal through diet and vitamins etc. Unfortunately in my situation I've been on high doses of the meds so long it's damaged my thyroid so it no longer works to its full capacity. I'll be on this for life now unfortunately. I hope you have better luck than I did x
allan91696 Tutu123
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Hi - Im in the UK, it didnt occur to me to try a private Dr (we are brought up to believe every word the Dr says and dosent enter our heads they are wrong or cant be bothered to look in to our condition/symtons properly), I did get my Dr to refer me to a endocrineologist, whom I was quiet disappointed with, just looked at my results, did the same normal test as the normal Dr and said my levels are as good as they are going to get, since then I came across an article on the net (on Pinterest of all places - by chance looking for something else) about the shocking side effects of Levothyroxine etc and that started me looking into things for myself.. I've had a carpel tunnel op, there was problems in my marraige and ended in divorce, theres been things/events gone on which now I could understand why they happened but at the time would never have said the thyroid was to blame.. She has remarried and the damage is done.. The dose i was/am on was not as high as yours, your body is amazing, given the right conditions will heal itself from most things... I would defenitiely look into boosting/healing your immune system, start with high dose of Vit C (1000), Vit D etc Thyroid is a sympton not the root cause - heal your immune system, high does of Vit C has also been known to reverse heart conditions.... Don't give up!
Tutu123 allan91696
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Hi Allan
Yes I completely agree that thyroid can ruin other areas of your life too. I've lost jobs and friends etc because I felt so awful and depressed and exhausted.
No it didn't occur to me either to see someone privately it was actually someone on this forum who suggested it and I didn't know theu existed. The stuff he offered me (natural dessicated thyroid) was better than levothyroxine but it made my heart race so now I buy a bovine ndt from America without prescription and it makes life a lot more bearable. It's called thyrogold. They market it as a supplement so people who are unable to get a private prescription can buy it but you have to dose it yourself. I thought it was risky but best thing I ever did - all the areas of my life are gradually coming together. They tried to get me off all the meds completely before I tried this and we found I couldn't get below 50mg and I do actually take vitamin D and c funny you should mention that.
NDT is a closely guarded secret and the nhs aren't allowed to discuss it but definitely worth looking into if you are struggling with the synthetic meds from the nhs. I can recommend an endocrinologist in Berkshire who can prescribe it.
allan91696 Tutu123
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Hi - I don't really know much/hardly anything about NDT, are you taking that instead of Thyroxine? This is day 1 of week 2 of cutting back from 75 to 50 Thyroxine, got a weeks suply of 50's left then start on the 25's, the only thing this tablet has ever done is put my weight up, when I was on, 25 - 50 - 75 I still felt exactly the same, they are not making any difference..
The plan with me is to be on 25 for 3 weeks then 25 every other day - I will start my sea kelp supplements around this time along with 1000 Vic C 2/3 times a day Vit D, and a few others Vitamins to boost the immune system... If at the end of the day all this dosent work I will look into NDT.. Going to boost my immune system and make a few lifestyle/diet changes..
Tutu123 allan91696
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Yes I take it instead of levothyroxine. I was exhausted, dizzy, cold, fat and suicidal on levothyroxine. Getting off it was the best thing I ever did. I've heard mixed reviews about sea kelp that some believe it heals the thyroid and others believe it to be harmful. I admire you for trying the various things. Going cold turkey or even reducing medication at all isn't for the fainthearted and some of the symptoms can be horrific (they were for me anyway)
allan91696 Tutu123
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Tutu123 allan91696
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It took me over a year to get down from 150mg to 50. I had to do it by 12.5mg every couple of months which was pure torture each time. They started trying to take me down by 25mg initially but I physically couldn't move. I felt like I was drunk when I walked up and down the stairs I couldn't remember things, I was crazy depressed all the time couldn't stop crying it drove me insane so had to do it gradually. My doctor suggested kelp but I found it made no difference to me. Im on other vitamins now but again I don't feel a big difference from them
barbara98940 allan91696
Posted
Hi Allan, Thyroxine (T4) needs to be converted to Liothyronine (T3) by your body for you to be able to get benefit from it. The T3 then needs to be absorbed by your body by binding to thyroid receptor cells. Some people can't convert from T4 to T3 very well, which means the T4 stays in your bloodstream giving artificially high readings for T4 in the blood test results AND they still have hypothryoid symptoms. Stress can impair the absorption of T3 creating something called Reverse T3 which binds to the thyroid receptors but is inert, so again you feel hypothyroid with artificially high blood test results. Have a look at tpauk for info - you'll need to register to get the treasure trove of information. When I was decreasing or increasing my dose, I found it easier to manage if I did it by a quarter of a 25mcg tablet (i.e. 6.25mcg) every 2-3 days - after a week I had reduced by 25mcg. I've read research papers that say Iodine can be toxic to the thyroid if too much is taken. Sea kelp contains high amounts of Iodine. Do check your B12, folate, calcium (will be high if you are low in vitamin D as the body needs vitamin D to absorb the calcium), iron, ferritin (needs to be 70+ to process thyroxine), magnesium and potassium levels as having hypothryoidism can mean you don't process food properly to get the vitamins and minerals you need. I too am on thryogold. See if you can get your doctor to test T3 and T4 levels. They should both be at about the same place in their respective ranges, so if T4 is in middle of its range, T3 should be too. If your T4 is high and T3 is low in its range it means you are not converting T4 to T3 very well; similarly if your T4 is at top, but T3 is in middle - you get the idea I hope?
allan91696 barbara98940
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allan91696 barbara98940
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barbara98940 allan91696
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The best explanation I read is got by googling 'the diagnosis and treatment of hypothyroidism' by michael
barbara98940
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barbara98940 allan91696
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Hi Allan, it would be really useful to know what your levels are before you start supplementing, these can then be used as a baseline to see how much you've improved. The usual vitamins and minerals to be deficient in are vitamin B12, vitamin D, ferritin (needs to be 70+ to absorb thyroxin), iron, folate. So get tested for these before you start supplementing.
As to sign a kelp, I tried it for a couple of weeks then stopped when I realised his bad it was for me.
Tutu123 allan91696
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Barbaras really good at explaining these issues and it was her who introduced me to thyrogold. It's quite scary when you do your own research actually how little the doctors know about these conditions!
barbara98940 Tutu123
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Hi Alfonsina, welcome! Have a quick read of the terms and conditions of this site - it doesn't allow links unless from recognised mainstream health sites such as NHS, Patient or charities - and even then one's message is delayed whilst it is checked by a moderator. This moderation is what keeps this site so friendly. It is a good idea to turn Private Messaging (pm's) on as then people will be able to send you links and recommend practitioners that are non-mainstream e.g. the creator of ThyroGold.
allan91696 barbara98940
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Hi - by the looks of my post my Vitamins & Sea Kelp has arrived, Ive not started them yet - when you say Kelp was bad for you - what do you mean? I intended taking it when I had almost stopped thyroxine completly.. this is week 2 of reducing to 50, having a lot of bad (dull) headaches..
barbara98940 allan91696
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Do a Google scholar search of articles on iodine and hypothyroidism - think that's where I read about it.