Myxoedema madness .: I would love to hear from... - Thyroid UK

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Myxoedema madness .

Susan1233711 profile image
64 Replies

I would love to hear from anyone that has gone past thyroid condion, into “Myxoedema madness“I would love chat to you to help me understand and know I’m not the only one ? Yours Susan. :)

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Susan1233711 profile image
Susan1233711
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64 Replies
SonSwinburne profile image
SonSwinburne

I did it was an awful time. I couldn’t think straight I was obsessed. I stayed in my room and felt cold would hit myself for feeling the way I did I was constantly crying. I felt so exhausted my eyes felt so so tired. I was anxious and depressed I felt alone I couldn’t focus on my family it just ate me up. I had passed out a few times with dizzy spells my face was all dry and wrinkly. I had to start on a high dose of 100mg as I was that under they discovered it just in time. The madness was I went in a few times with skin problems and puffy eyes they said it was an allergy and gave me hydrocortisone it took a friend at work to tell me I think it’s your thyroid as she had some of the symptoms and was diagnosed hypothyroid. The doctor then took a test and then I was immediately put on this and after 9 months I was back to myself again. I did have to take anti depressants til I calmed as my hair started to shed once on the Levo but it slowed down after 6mths and stopped all together at 9mths so it’s been a life saver.

Susan1233711 profile image
Susan1233711 in reply to SonSwinburne

I was diagnosed in 2000 after the second birth of my daughter, The symptoms I had after my first child did not subside this time I had pins and needle is from my fingertips to my elbows in both arms. Like you I was swollen everywhere my eyes ,neck ,fingers ,legs, toes ,my skin is so dry ( and wrinkly ) I have been on my thyroxine of 200 micro grams . I wasn’t as lucky as you I’m still boarder line schizophrenic , I hate the way I have no energy, I can wake up shattered. I spend all my time in bed, just as you did, depressed and asking what am I here for? Just to exist! But I do try my best to be up beat , but my life isn’t going to get any better, than it is now, my health mentally and physically are so messed up and on top off that I don’t know what is real from my dreams ?

Thank you so much for your reply and I hope and prey you are back to normal as you are the first person I have ever chatted about this , so thank you very much for your reply and time.

Clutter profile image
Clutter

Susan1233711,

"Myxoedema Madness" is a serious psychiatric illness as a result of untreated hypothyroidism. Prior to thyroid replacement being developed hypothyroid patients would gradually descend into madness and many would die in mental asylums.

google.co.uk/search?q=Myxoe...

Susan1233711 profile image
Susan1233711 in reply to Clutter

I know it is but I didn’t know what else to put my illness under, I now have an illness ( made up for me ) organic mixed affective psychosis . I just didn’t want some one on the wrong topic, I take my thyroxine but still nuts! Even doctors don’t know what to do with me! The funny thing is I have a cousin , in the same way but she mainly shows traits of arsonist and self Harmer . She is a lot older than me and spent 40 years in a padded cell or in a prison cell I know about asylums I don’t want to offend anybody I really just want help to understand my illness

Clutter profile image
Clutter in reply to Susan1233711

Susan1233711,

If you are optimally dosed on Levothyroxine you won't have myxoedema madness. Early in the last century when thyroid replacement became available myxoedema madness was reversed once patients were optimally dosed.

If your diagnosis of organic mixed affective psychosis was prior to your hypothyroid diagnosis it is possible that the psych drugs you are taking induced hypothyroidism.

Susan1233711 profile image
Susan1233711 in reply to Clutter

I have had thyroid problems all my life as I spoke to My psychiatrist on the mother and baby unit they came to the conclusion, my thyroids have never worked! My own body attacked them. I never went through puberty normally , loads of stuff never had a normal period, so in 2000 after my second birth to my daughter the symptoms did not subside they got worse I was hearing things seeing things didn’t know what was real what wasn’t and when my daughter was four months old I was taken into the mother and baby unit at Derby and it was there that they found out it was my thyroids , I was told by my psychiatrist that I was suffering with myxoedema you’re not nice after a week of taking thyroxine being slowly built up they wanted me to stay in hospital but I had two small kids and I did not want to stop in hospital while they got my thyroxine levels right they were frightened of me having an art attack whilst in there I had student doctors coming in examine May where I was told to keep my mouth shut because the never seen this before everything about me was swollen , then after a week of taking the thyroxine my psychiatrist told me you don’t have myxoedema madness anymore one it’s impolitically correct and now that I’m on the treatment and I am not getting better that is when I was then diagnosed last and foremost was with organic mixed affective psychosis , sorry the the essay.

Clutter profile image
Clutter in reply to Susan1233711

Susan1233711,

Myxoedema means swelling and can occur in severe hypothyroidism and hyperthyroidism. It is caused by mucin under the skin.

Can you post your recent thyroid results and ranges (the ranges are the figures in brackets after the results)? How long have you been taking Levothyroxine and what dose is it?

Susan1233711 profile image
Susan1233711 in reply to Clutter

Do I get them from the doctors ?never seen them , all they tell me is that I’m in the right place with my thyroids, I started them in 2000 September . I was on them at 200 micro grams then I had massive heart attack and thyroids went over active reduced down and then again 4 yrs ago when my mum died , dose dropped again now 125 as went over active again, but now stable, never seen any numbers of tch 3 or 4 or any of the other stuff I have read on here.

Clutter profile image
Clutter in reply to Susan1233711

Susan1233711,

You have to ask for the results and ranges. Important to have both as without the ranges it isn't possible to say whether or not you are optimally dosed. Normal is a broad range and isn't necessarily optimal for relieving hypothyroid symptoms. If you have myxoedema swelling you may be undermedicated but as you've had a heart attack your doctors will be keen to make sure you are not over medicated again. If your thyroid results are 'normal' it is unlikely any psychosis is due to thyroid.

Susan1233711 profile image
Susan1233711 in reply to Clutter

I feel as it needs to go right up ,lol I was told it is all down to thyroids even I b s. But I feel to the core it is at the age of 6,7 I remember feeling so a lone in life and I soon kept things to myself my mum always told me I was A hypochondriac , so yes I would hide and keep every thing to myself , all my life I have had people roll their eyes up at me ! All I want is to be functionable person not perfection.

I will get my paper work from doctors when I go next, I hate going there, it’s the waiting room! Thank you so much !!!

Clutter profile image
Clutter in reply to Susan1233711

Susan1233711,

It's awful feeling unwell and dysfunctional and seemingly no help for it.

You could ring the GP receptionist and ask whether they can print off your results and ranges for you but if you will be seeing the GP it may be easier to ask GP.

Post your results and ranges in a new post when you have them and members will advise.

Susan1233711 profile image
Susan1233711 in reply to Clutter

Thank you so much for your help!! I will post when I get to the doctors . Thank you

Susan1233711 profile image
Susan1233711 in reply to Clutter

I’ve tried to do it now got to speak to doctor tomorrow, to discuss what it is I’m actually wanting copies of. So fingers crossed , thank you so much for all your time n advise.

shaws profile image
shawsAdministrator in reply to Susan1233711

Just reading all of these posts about Myxedema one would never, ever think that in these modern times that a person would ever reach such a serious stage in hypothyroidism as they remained undiagnosed/undertreated.

My heart sank on reading your experiences and some are still not well.

The original thyroid hormone which was made in 1892 and has since allowed us to recover from Myxedma - the most serious condition and hypothyroidism with NDT.

This was a new period in that clinical symptoms were learned by doctors and people were given NDT until they were well.

In these modern times diagnosis (if it is even thought about) many people remain undiagnosed, despite clear clinical symptoms as blood test and TSH have replaced the clinical symptoms. So I assume that's the reason for 'modern day myxedema'.

It is more than a disgrace and I think more publicity is warranted to warn people of the impotence of most doctors/endocrinologists to diagnose/treat hypothyroidism on a higher level than at present.

SonSwinburne

Susan1233711

marigold22

From now on all your blood tests for hypothyroidism should be at the very earliest possible, fasting and allow a gap of 24 hours between levothyroxine (or other thyroid hormones if you take them) and take after test. Levo should be taken first thing on an empty stomach with one full glass of water and wait an hour before eating.

This helps keep your TSH at its highest as dose can be adjusted by the medical profession when it shouldn't be.

Ask doctor or psychiatrist to take the following:

TSH, T4, T3, Free T4, Free T3, and thyroid antibodies.

Also do B12, Vit D, iron, ferritin and folate - everything has to be optimal.

Usually NHS doesn't do all of these but after all your have gone through I believe you are entitled to them. If your FT4 and FT4 are low, you are on insufficient meds. T4 (levothyroxine) is an inactive hormone and converts to T3 but you must be on an optimum of T4 for it to do so. T3 is the only active thyroid hormone and it is required in our billions of T3 receptor cells and our heart and brain contain the most. FT4 and FT3 have to be towards the upper part of the range, and TSH 1 or below.

I believe that they should add T3 to your T4. Or trial T3 only if you have serious problems. NDT (natural dessicated thyroid hormones) which used to be the only replacement given contains T4, T3, T2, T1 and calcitonin is made from animals' thyroid gland could also be prescribed if patient's body is more conducive to it than a synthetic hormone.

You all have my sympathy for what you've all undergone.

Susan1233711 profile image
Susan1233711 in reply to Clutter

I dont know the figure but I broke the record for under active thyroid at derby city hospital, but never seen or talked with figures at my doctors, he told me he doesn’t no where to go with me only work with me instead of not being listened to. Thank you so much for this, I would love to feel better, body n mind, & to have some energy for once in my life I would love it ! Thank you

Clutter profile image
Clutter in reply to Susan1233711

Susan1233711,

Hypothyroid patients are often low or deficient in ferritin, vitamin D, B12 and folate which can mimic hypothyroid symptoms so ask your GP to check. Ask for a printout of the results and ranges and post them in a new question for advice. Even if they are within normal range levels may need tweaking to improve wellbeing.

If you are taking anti-psychotics they may be causing fatigue and adverse effects too. Read the patient information leaflet supplied with your meds.

Your GP sounds nice.

Susan1233711 profile image
Susan1233711 in reply to Clutter

What is mucin??

Clutter profile image
Clutter in reply to Susan1233711

Susan1233711,

It's a sort of mix of water and gel under the skin.

Susan1233711 profile image
Susan1233711 in reply to Clutter

Ok thank not had that I do hv blotchy skin on neck and arms patches very small but a mess lol

Clutter profile image
Clutter in reply to Susan1233711

Susan1233711,

Body would be swollen and you'd be unable to pinch skin on arms and legs between thumb and fingers.

joydot profile image
joydot in reply to Susan1233711

its the element that keeps your skin from drying out in the heat... hashis people have up to 40x as much in cells as normal people

joydot profile image
joydot in reply to Clutter

i have it. when i am moved onto levo from dessicated i swell instantly. after latest swap i am 50lb over my weight when i arrived 1 yr ago (and then i still had extra 15 on me from previous round). it def affects my brain, this round heart and lungs too. feel terrible yet docs look at me and say its fine even tho its obviously not - am tall and normally quite thin so the extra doesnt look as dramatic - am usually size 10 and am now 18 if lucky. gp's really dont like to have to think....

Susan1233711 profile image
Susan1233711 in reply to joydot

I’m on levo 125, my eyes are swollen they look like little water beds. Lol

abirose311 profile image
abirose311 in reply to Clutter

It is not a case of being 'optimally dosed on Levothyroxine' ! It is whether or not your brain is receiving sufficient T3/Leothyronine.

In my experience being 'optimally dosed' on Levothyroxine is absolutely useless if you are not converting T4 to T3

Clutter profile image
Clutter in reply to abirose311

Abirose311,

It is a case of being optimally dosed on Levothyroxine for the majority of people. However, if you are a poor converter you may need T3 in addition.

Angel_of_the_North profile image
Angel_of_the_North in reply to Susan1233711

How's your free T3?

marigold22 profile image
marigold22

Me too. It was a living nightmare. I was taken off in a blue light ambulance twice with massive panic attacks, was an in-patient at psychiatric unit and an out-patient 6 years later but no doctor recognised it, even though I had already been diagnosed as hypo. I was incorrectly on T4 for 14 years after being diagnosed, now I know my body can't convert T4 into T3. Couldn't look after my son, couldn't work. Obviously now I have 'mental health issues' written on my medical notes. In hindsight I was in and out of myxoedema madness for 10 years before Dr P prescribed T3 only. It makes me so angry that it wasn't recognised as the original GP who diagnosed hypo called it Myxoedema (instead of hypo) to my face and in my medical notes.

Susan1233711 profile image
Susan1233711 in reply to marigold22

When I got diagnosed in 2000. I was put on the mental ward but it was a mother and baby unit thank goodness . I have now got stents through massive heart attack, My lung liver and kidney function tests are poor .

Since my diagnosis in 2000, I struggle with every day to day life and hide in my bedroom where I feel save no pressure no bubbling in my head and I don’t have to keep apologising for being me. Even though I know it’s my illness ! We have now discovered my thyroids never worked as my own antibodies were attacking them I was classed as a full blown schizophrenic all my life just didn’t know it. I was afraid of adults people in uniforms even the lollipop lady I never seem to be quite right and I have accepted that I will never be 100% normal I know it’s my life, it’s what I make of it, I do try but I just feel like the GP fobs me off as he doesn’t know what to do with me now !

marigold22 profile image
marigold22 in reply to Susan1233711

Mine started after the birth of my son in 1981. For decades I had all your symptoms, forever sleeping, unable to look after my son, always pushing him off to my parents, friends, etc so I could sleep, never taking him out to do things as I didn't have the energy, was too depressed, no happiness in me at all. One private endocrinologist diagnosed me as bi-polar and wanted to prescribe lithium but I refused.

There is so much new medical research coming out now- showing that autoimmune diseases such as rheumatoid arthritis, lupus, hashimotos thyroiditis, also depression, even schizophrenia - start in the gut. If you have been diagnosed with Hashimotos (high thyroid antibodies), then to start with you have a thyroid which is being bombarded by antibodies. If you are still in this condition whilst taking 200mg of thyroxine (T4/levo) then it's not working. Your body is probably unable to convert the T4 into the usable thyroid hormone T3. Until I was on a reasonably high dose of T3 I was not sane.

In fact, until about 4 months ago I was still suicidal, paranoid, hardly left the house unless I absolutely had to buy food, my brain was playing games with me, all that you are suffering it sounds like. About 4 months ago, I changed my diet - high fat (eating cream, nuts, full fat milk, avocados, cheese, tinned mackrel) and cut out all carbohydrates. This was on the advice of a homeopathic doctor. I also take vitamin and mineral supplements - vitamin C (1,000mg a day), multi B vitamins, vitamin D, zinc. magnesium, selenium, vitamin B12 alternate days. It has now been proved that low levels of vitamin B12 and various other B vitamins, also vitamin D & many other vitamins & minerals cause psychiatric type symptoms. Only recently do I feel completely sane, go out each day, have even volunteered at a charity shop. I'm not sure if it's the high fat, low carb diet or the supplements. I have read that our brains are a high percentage of fat, so perhaps it's the high fat diet.

You need to go to your GP and ask for a Full Blood Panel (to see what condition your blood is in); also a Full Thyroid Panel (which must include TSH, FT4, FT3, thyroid antibodies). Then about one week later, you must go to the reception of your GP & ask for a copy of those blood tests. They may roll their eyes but you are legally entitled to have them. Then you must write a Post on here to include those results. You will get help interpreting them. This is all because GPs, even endocrinologists, are unable to interpret thyroid blood tests, or can't be bothered.

You have suffered for far too long. At the end of the day, what is schizophrenia? Our bodies are made up of "ingredients", if one or a few are out of kilter, then we feel ill.

Please do send me a Private Message if you need any more info or advice. My heart goes out to you - it is totally hellish state of health, I lived it for decades.

marigold22 profile image
marigold22 in reply to marigold22

P S I forgot - in your blood test, you must ask your GP to test your vitamins B12 & vitamin D, your folate and ferritin. I suggest you make a list from my Reply to ask your GP for so you don't miss anything out. I also suggest you take someone with you when you go to your GP appointment to ask for these blood tests. They are vital to start the unravelling of your condition. You have been diagnosed with a Thyroid condition; the doctors and even psychiatrists have let you down extremely badly, as happened in my case. Hugs x

Susan1233711 profile image
Susan1233711 in reply to marigold22

Thank you so much, it’s just nice for people to agree with me. I’m always normally, even though I know I’m right , just some times ! Lol thank you marigold22 . And everyone else on here x thanks doesn’t begin To tell you how much these conversations have meant to meTo tell you how much these conversations have meant to me! X

joydot profile image
joydot in reply to Susan1233711

susan, i am really sorry to hear your experience. its really awful and yet what can we say??? this comes down to medical incompetence. this forum is the thing that keeps my head from exploding...

hope you feel better. maybe fight for ndt - it helps me a lot

shaws profile image
shawsAdministrator in reply to Susan1233711

Please, if you can, get a Full Thyroid Function Test which is TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. Even if your GP requests them the lab may not do all of them. If you can afford it you can get a private one for those not tested.Tell GP you've been asked specifically for Free T4 and Free T3 by advice from Healthunlocked Thyroiduk.org.uk the NHS Choices for information/advice.

Ask GP to also test B12, Vit D, iron, ferritin and folate at the same time.

Make the appointment at the very earliest, fasting (you can drink water).

Allow 24 hours gap between your last dose of levothyroxine and the test and take afterwards. Levo should always be taken with one full glass of water and wait an hour before eating. Any other medications should be taken 4 hours apart from levo. I usually have vitamins minerals at lunchtime.

Post your results with the ranges on a new question.

Susan1233711 profile image
Susan1233711 in reply to shaws

I have tried but been fobbed off, tomorrow I will get my doctor on the phone. and asking for what you have put up on here, as I have took a screenshot on my mobile. So I can get that up when I’m asking him what I need he can write it down and give me a fresh blood test . Thank you for your help!

shaws profile image
shawsAdministrator in reply to Susan1233711

As far as I understand, I think that doctors have been directed that a TSH and T4 only are are sufficient. So he may not do them.

You can tell him that as your life has been a disaster since the birth of your last child (very common after childbirth to develop hypo) that you you have become a member of Healthunlocked Thyroiduk the NHS Choices for information and advice and you're following the advice. If he could possibly do these as you are striving on your own with very disabling symptoms due, you are sure, to hypo,

Mamapea1 profile image
Mamapea1 in reply to Susan1233711

Hope you're keeping your chin up Susan ~ just wanted to let you know you haven't been forgotten ~ thinking of you and sending you warmest wishes ~ take care Mamapea x

in reply to marigold22

marigold22 your Dr wasn't being rude or inaccurate in diagnosing your condition as myxoedema, it's what you had - mxoedema is a term used synonymously with severe hypothyroidism, albeit probably less so in common parlance nowadays. What's confusing is that it's also used to describe the swelling/bloating under the skin, that can occur in hypothyroidism.

marigold22 profile image
marigold22 in reply to

What I meant when I said my GP called it Myxoedema, was that there was only one more word to add - Madness!

shaws profile image
shawsAdministrator in reply to marigold22

That's is a common occurrence in this modern day. People get diagnosed as psychiatric but their Free T4 and Free T3 aren't tested at all. Our brain and heart need the most T3 in order to function optimally. If hypo, sufficient T4 should be able to do so but sometimes we need the addition of some T3 too. I wonder why the Endocrinologists etc are so immune to pleas from patients about why are they not improving their health only to be told 'TSH is in range' and patient dismissed.

Myxedema is the 'proper name' for hypothyroidism. It is only if someone isn't diagnosed and treated that they develop Myxedema Madness.

google.co.uk/search?q=Myxed...

Before levothyroxine and blood tests we were diagnosed upon our clinical symptoms given NDT until symptoms were relieved.

marigold22 profile image
marigold22 in reply to shaws

Thanks, shaws . What makes me so mad is that I had already been diagnosed with Myxoedema / Hypo but was either on T4 or much too low dose of T3. So after seeing 2 psychiatrists, one NHS Prof of Endo, umpteen NHS endos, one private Prof of Endo, one private doctor well known here (admittedly I didn't return as couldn't afford him), dozens of different GPs - I got well by researching myself with this amazing site, got very bossy with all GPs & endos, and - wow - got my health back.

shaws profile image
shawsAdministrator in reply to marigold22

Well done. It is amazing that most of us on this forum now know much more than Endocrinologists or doctors regarding hypo.

Susan1233711 profile image
Susan1233711

Thank you so much , I’m crying now as there might be light at the end of the tunnel, thank so much!, I don’t know what it is like to normal , have energy I would love it for once! Thank x

marigold22 profile image
marigold22 in reply to Susan1233711

Just look at the 'hornets nest' you have opened up here by writing your Post. It can only get better for you now after all your suffering x

Mamapea1 profile image
Mamapea1 in reply to Susan1233711

Susan ~ I too cried when I found this forum. There IS light at the end of the tunnel and there are many people on here that have suffered in all sorts of different ways as a result of poor medical practice or knowledge ~ usually both. But you have found it now and all you have to do is, as advised, get results and post and you will get the help you deserve. Your story is extreme and sad, but you are about to turn a corner, and I'm happy for you ~ in the meantime, take care of yourself. ((Hugs)) Mamapea x

Susan1233711 profile image
Susan1233711 in reply to Mamapea1

Thank you so much for your kind words of support!

joydot profile image
joydot in reply to Susan1233711

susan, it is absolutely not 'you'. i used to compete in elite sport and know how to keep my brain/ body in check - the thyroid bit overrides even that. it makes good life impossible - am always compromising to conserve energy and my compromises lead to poor decision making and it all snowballs from there. at those times the feeling of hopelessness is second to none. keep the faith, push on - i have defeated this shit before and will again, so can you - if you have felt that bad for that long when you get it sorted it will be like a miracle. i found bouncing 20 minutes on a tramp with music and yoga fantastic - esp before bed. there are yoga poses for edema and they work (i didnt think it possible). 3 months 30 minutes a day ... magic

Sylvia22 profile image
Sylvia22

I am sure you will recover. This group is a great help and a Godsend.

marigold22 profile image
marigold22

It makes me shake with anger that even when we have been in hospital, under psychiatrists, endocrinologists, we have still ended up not diagnosed correctly. All the symptoms and signs are glaring them in the face but despite their massive salaries, they fail to do their jobs properly.

Jessiepup profile image
Jessiepup

My grandfather was put in asylum in the 40's

marigold22 profile image
marigold22 in reply to Jessiepup

So was my uncle who was diagnosed with schizophrenia aged 20, and he only died recently aged 83. He lived a hellish life, mainly in institutions. Only recently have I realised he no doubt had an autoimmune disease. Also his own aunt was incarcerated from early twenties until she died aged 52. They are obviously "the black sheep of my mother's family" and my great aunt was not spoken about. Only through genealogy have I discovered all this. God bless them both.

littlemo76 profile image
littlemo76

Omg marigold youv justt written my life story. 20yrs later im just starting to unravel it all. I am so angry with the system. But i was on lithium desp to feel better. Now yrs later im finally realising its not me thats wrong. I cannot convert to t3. Been on levo since 2003 n tho i felt heaps better than on all those ADs my body internally seemed to be aging too quick. Fog like dimentia, no memory,sore eyes joint pain etc puffy legs wrinkly skin n in 41. Gp still sceptical about thyroid even tho private endo told be iv hashis n yes its all connected. He was horrified!! Thank god for these forums! Iv never had guts to question a Gp. It does get better.

Jessiepup profile image
Jessiepup in reply to littlemo76

I questioned a gp 20 years ago who said I had post natal depression. It was only that my mother in law had endured 7 years of thyroid that she recognised the signs and made me stand up to them. It was then that I found out my grandad had been labeled mad when younger - it was a family secret nobody talked about

marigold22 profile image
marigold22 in reply to Jessiepup

If only I'd had a mother or mother in law who had know what was wrong. I was absolutely desperate for someone in my family, my husband, a neighbour, to look at me and my behaviour and know what was wrong. It's an absolute travesty

littlemo76 profile image
littlemo76 in reply to marigold22

Thats why my endo Dr Toft cant understand why non of the NHS Drs or psychiatrists never picked this up. Or admitted they were wrong. 20yrs theyv labelled me with mental health issues,despite a PT at 17yr old and lithium treatment even had ECT!!! yet iv never been on any AD since starting thyroxine. Im tired and i ache its affecting my eyes. Its affected my heart. Feel like iv dementia, muddling words n zero memory.Yet they still say oh its nothing to do with thyroid! The annoying thing is iv done my homework for them n have tests to prove it. Iv consulted a specialist. But they wnt admit theyr wrong!!

marigold22 profile image
marigold22 in reply to littlemo76

Do you know about the T4 versus T3 argument? If you are still in the state you describe, it sounds to me like your body is not converting your T4 (thyroxine) into the usable thyroid hormone T3. When was the last time you had blood tests? Dr Toft has a very mixed reception on this forum. I was unable to piece my own jigsaw together until I did the private (saliva) test for the DIO2 gene. My results were that I've inherited a faulty gene from one parent (probably my mother), and my body is unable to convert the T4 I was taking into T3. So I was left feeling like you have described for a very long time. I used Regenerus which has been recommended on here regeneruslabs.com/page/home....

They have a variety of thyroid genetic tests so if you go ahead, you need to phone or email them to ask for the Thyroid DI02 Test. It costs around £160, but I considered it money extremely well spent. It allowed me to piece everything together after total confusion for decades.

littlemo76 profile image
littlemo76 in reply to marigold22

Dr Toft was lovely! Really really helpful n understanding. Yes as soon as i seen my vits n iron tests along with high tpo i started asking questions to previous Gp. Had a heart scan n lady doin scan suffered UAT along with her sister n basically she had same problem with Teva brand but reassured me i shld not be fobbed off! The last Gp to be fair seemed to understand but regretably found his hands were tied 'legally' whatever that meant but in a round about way both suggested i change practice. So i feel like iv to start again. Its all very wearing but at least i know iv hashis, i know i have a conversion problem and if Gp wnt give me t3 iv my own i ordered in. But its funny how you whos never met me recognises a conversion issue, yet 5Drs have never heard of it!! My only concern self medicating albeit on guidance from Toft is if my critical illness/mortgage insurances will be still be valid?

JOLLYDOLLY profile image
JOLLYDOLLY

When I was five weeks old, I was in a coma, because I had no thyroid function. My gland had never developed properly and by all accounts I only have a partial non working gland, so have been on medication all my life. If it was not for the quick thinking of a Health Visitor, I would not be here today. I was completely lifeless.

Not sure of the dose as a child, I know at one point, I was on too much and they had to reduce my dose, as my bone age was two years old than my actual age. But it was soon rectified.

When I was 32, my previous GP (one of many), decided that I was on too much, she knew what she was doing after all (NOT!) My dose went from 200 mcg of thyroxine down to 75 mcg! I thought I was having a mental breakdown, didn't know what time of day it was, slept for hours, jaundice, dramatic weight gain, gyne problems, brain fog and little voices in my head. I had odema developing in my feet and legs.

It was my gyne that told me that my thyroid was out of kilter and was referred to a Endo. To cut a long story short, I have gained a lot of weight, but I am now back on 200 mcg of thyroxine and 20 mcg of lithyronine (for now anyway, until they stop it), but the damage is done.

Three years ago, I was rushed into hospital, (I am lucky to be here), I had severe pneumonia, brought on by odema throughout my body and into my lungs, I was drowning in fluid and had damaged my right lung. Evidently my heart had also enlarged to cope with what was going on.

I have sleep apnoea, but they think I might have always had it and it had gone undetected. I wear a cpap at night with oxygen, likely to be permanent, but was on oxygen 20 hours a day at one point.

Also, B12 deficiency, pernicious anaemia and vitamin D deficiency.

The odema is still with me, permanent damage to my legs and my feet continue to be swollen. They tell me to walk, but sometimes, I find it hard. I have severe back pain, but they will not do anything as they say it is down to weight, it isn't. as I have always had back ache even when slim, both my daughters suffer with it too and they are also slim.

So our thyroids, have a lot of clout in our bodies and it isn't just a case of taking two little tablets a day (as a member of my family used to say) - it is 9 tablets a day in total including a diuretic.

You are not on your own Susan, you are not even going mad, it is trying to work out what is going on with your body and how you are feeling. No one knows or understands, unless they go through what we do. Ignore the ignorance and the raised eyebrows.

We all understand :) xx

shaws profile image
shawsAdministrator in reply to JOLLYDOLLY

The more we read awful stories and think we cannot get worse ones up they pop just as yours has done.

I'd copy and past some of your story onto your profile, so that when people click on your name they can read it.

Susan1233711 profile image
Susan1233711 in reply to JOLLYDOLLY

I am so sorry to hear your circumstances Jolly dolly. Like you my thyroids don’t work. Probably never have ! My doctor has told me my body is 10 yrs older than me, I understand what you mean and are going through, but not exactly the same but I do understand! I hope you get sorted soon , I am now getting excited to be normal after my blood test results, and post them on here, I have never seen them before. So that people on here will help me understand them and graphs.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Susan1233711

Thank you Susan1233711,

Sorry to hear about your circumstances too. I am affectively on what I like to call my natural dose of 200 mcg with a little booster of the T3. However, trying to get the weight off is a lot harder than I bargained for especially with the odema.

I am struggling with grief at the moment, so most probably not as focussed as I should be. Just not hungry, but when I am, eating silly things.

I am going to make it my prime target in the coming months.

Hope everything works out for you and keep in touch.

Take care

:) xx

Susan1233711 profile image
Susan1233711 in reply to JOLLYDOLLY

I’m sorry for your loss, but please be careful as your thyroids can change to over active, due to a big trauma in your life , such as a death, I hope you are feeling better from the grief and your health too! X

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Susan1233711

I have had three deaths in a short time. The last one was my little sister, who I adored.

Regarding my thyroid problem, it is very unlikely to be over active. Trust me on that one. But thank you for warning me. I am due to have some blood tests done in January when my next review is due.

I am having counselling, so hope I can get through it. But never ever felt so heartbroken in my life.

Take care and keep in touch :)

Susan1233711 profile image
Susan1233711 in reply to JOLLYDOLLY

I hope you can get your head and feelings in order very soon, my mum died 4yrs ago , I thought if I grieved I would die from an other heart attack. I’m still here,

So stay positive and I know it’s so much easier to say it than do it,

Take care of yourself ! X

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Susan1233711

Thank you. I know what you mean about the heart. I just feel mine is completely broken. Just got this sick feeling and pain in my heart all the time. You take care of you as well :) x

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