How Debilitating is Thyroid Disease to You? - Thyroid UK
This is an interesting poll. May I suggest anther one? (if it's not been done already).
How debilitating was thyroid disease for you when you were first diagnosed?
(because my blood tests didn't correspond at all to how badly this disease affected me)
Good idea Totoro - will add it to our future polls list!
totoro... i am in the same situation. diagnosed as compensated hypo, slightly elevated tsh and normal T4.
but by that time my life was at stand still.
2 sibling are hypo and i am tpo positive.
now on 50mcg, only helped a bit.
pushing my endo to go on t3... fingers crossed.
but also read up on fibromyalgia , and notoriously these to condition cd be interrelated.
he said no one in uk will give me NDT .. but i dont buy that.
sev fatigue/ muscle ache/ brain fog/ fuzzy head is my storey of my life past few months.
Hi, same here. I have fibromyalgia and hypothyroidism. I think there connected my doctor disagrees?? Feel terrible on levothyroxine.
I am the same Dylan, I have fybromyalgia and hypothyroidism, arthritis, had spinal operation and knees and hands. Feel terrible, always tired with no energy, hurt all over and get 3/4 major headaches per week with bad neck pain. I'm in UK so only levothyroxine is given. I'm on 200mg at the moment. I really wished the uk done NTD for us.
Hi Waynelisa,sorry you feel so bad..you would think this day and age there would be more done about treatment! Have you asked others on this site regarding T3 or NDT. I am going to try T3 only. There are great advisors on here.
My neck is big problem it seems to turn and shake,would love to get to bottom of that,GP just says it's stiff neck?!
Hi Dylan555 - they are probably not only connected, they are probably the same thing! There are many of us who think that the symptoms of "fibromyalgia" are actually symptoms of low thyroid function. Don't know if you've read Stop the Thyroid Madness - they have a website also, but the book is even more informative (get the first book, not the second). You probably know this already, but low thyroid function affects every single cell in the body, therefore the symptoms of low thyroid can cover all sorts of things, including muscle and joint problems. Also, levothyroxine is not usually an adequate treatment (again, this is covered in the book). It consists of T4 only and most people need T3 as well. Sorry to say this, but don't expect your GP or endocrinologist to know about these things - they will most probably have a very narrow-minded view of just how bad low thyroid can actually be.
I had the same problem. The classic indeed obvious symptoms of thyroid disease were present prior to abnormal blood results. This was a terrible time, sitting in front of a GP puffed up and swollen with straw hair, split nails, skin like a crocodile unable to move or stay awake, barely knowing what planet I was on.
The GP response was to wait until thyroid disease could be quantifiably produced in the blood analysis.
Yes, I agree understanding the level of debility caused due to the initial symptoms of thyroid disease might provide information which might be used to bring about change in the way health care professional view thyroid disease and the management of patients. Moreover, inform others that in the light of no concrete abnormality in the blood, their symptoms could still be related to thyroid disease. Early detection and intervention is key!
I don't know where your reply to me is so I hope you see this!
Anyway, I live near Stuttgart in a small village about 20 km west of the city.
I am north east of Munich.
Your post interested me as I have never discussed my treatment options with the German endocrinologist. I simply turn up for the blood test when I am here and take the L- thyroxine as prescribed (sort of...I adjust as needed according to my symptoms). I assumed prescribing methods would be similar to UK. This is something I will now look into. Thanks.
Do you *only* use levothyroxine? If you feel it is not making you feel as well as you might be, you could always ask to have Thybon 20 as well. The best option for many - though not all - seems to be to use T4 with T3.
Yes, I take 50/75 mcg L-thyroxine on alternate days. However, my TSH swings wildly from one pole to the other but appears to respond to medication adjustment or ommision. As I have many other health issues, my blood is checked at least 3 monthly.
Thanks, I will discuss your suggestion with my endocrinologist to see if this would be something for me.
Danke!
If you have many other health issues, perhaps it is possible that these all have poor thyroid function as a common root cause. Treating low thyroid function properly can solve many problems - or at least I have seen this in people on other forums - that were not supposed to have anything to do with the thyroid.
Depression is one typical example: I was mildly depressed - well, sometimes more than mildly - but having taken T3 for two months now, I am full of my usual joie de vivre.
So many women will be prescribed other drugs on top of their T4 because the T4 is NOT dealing with - but in fact exacerbating - their hypothyroidism.
They get prescribed blood pressure meds, depression meds, statins for high cholesterol, and goodness knows what else, when all that needs doing - perhaps in addition to some dietary adjustments, too - is to give them T3 in addition, or even instead of, T4.
Would it be too nosy of me to inquire what your other health issues are?
Thank you for your concern. I don't believe thyroid disease is the root of my problems but I have a strong suspicion that an endocrine dysfunction is.
As a young woman menstrual problems and associated sore breasts were the bane of my life. In 1986 after the birth and death of my second child, I was diagnosed with PA and other forms of macrocytic anaemia, folate, zinc and other trace mineral deficiencies. In those days a sternum bone marrow aspirate and Schillings test were the investigations of choice. My consultant was young (30's), eager, enthusiastic and determined to find out why a woman in the prime of life wanted to sleep at every opportunity. He was given some clues as I had stomatitis and glossitis which probably put him on the right track. At this time he projected that in years to come I would be diagnosed with hypothyroidism and that my GP should keep an eye on me...which he didn't. The only other illness I had been diagnosed with was hypertension in 1978 during my first pregnancy and again during the second but not so high to be hospitalised like the first.
Hypo wasn't diagnosed until 2012 although I would estimate being symptomatic 2 years prior to this. In 2004, I eventually received treatment for hypertension, as high as BP 200/110. It has been the hypertension that has caused all of my problems. I now have hypertensive heart disease and heart failure as a result. Perhaps if I'd been treated earlier ...
Bilateral polycystic and fibrocystic breast disease with multiple adenomas was diagnosed in 2000., so that explains the years of suffering.
On my last MRT, I have 7 herniated spinal discs and a severe scoliosis ( now that could be linked to thyroid) plus 2 nerve impingements C6/7 and L5. Surgery is required but my risk is too high. Instead I have been treated with high dose oral steroids which wiped out my adrenal function and this has not recovered yet.
Into the bargain I have moderate Asthma which thankfully is controlled but my blood gas analysis is far from normal so I am waiting to find out whether this is due to heart failure or some other lung disorder.
My latest blood results make scary reading, mostly to do with poor endocrine function, althou thyroid tests are tip top at the moment.
Apart from structural issues in my spine, everything else is hormone related, including the severe Vit D deficiency which is now creeping back into normal values.
Personally, I think the main problem lies with the hypophysis feedback mechanism, maybe pituitary dysfunction, adenoma or genetic?
The future is not bright for me but many of the women and men visiting this forum have a decent future ahead if the fight for recognition of the multisystemic interrelated nature of thyroid and other endocrine disease continues. Holistic care is the only way forward.
Started on Thybon 20 last week. I have been asking for it constantly since your suggestion 7 months ago. I just hope it works
You could add another one to that : how debilitating was thyroid disease when you were first put on Levo?
Because about the time I was diagnosed, I didn't have much in the way of symptoms, just weight-gain, really. But after starting levo, I developed a whole lot more, lost my hair, put on more weight, etc etc etc. I'm now getting rid of them by being on T3 only.
I did not stay on Levo for long, but at about four days in I could barely walk, or lift my arms and had a the worst headaches I had ever experienced. I thought the back of my head was falling off.
That is great news, greygoose!
Ray Peat has a lot to say about how badly some women do with T4 only. Do you know about his work?
I have read some of it, yes, but it was rather a long time ago. I shall have to have another look.
I don't know if I am allowed to attach links, but the best one to start with on the subject of hypothyroidism is called:
"Thyroid: Therapies, Confusion and Fraud".
If you google this title, you should find it quick enough.
You most certainly are allowed to attach links, NL. And I'm sure those just starting out will be most grateful.
Well said. This is the first step to wellness as the untreated condition can cause damage left and prolong recovery. I was housebound and had about 150 symptoms yet bloods were showing normal for 18 months. I know others have gone undetected for years...decades, even.
I am still astounded that underlying thyroid condition is not being picked up on the list of commonly, and less commonly talked about, occurring symptoms...unless everyone is hiding behind the blood tests from an awkward-to-manage condition leaning on standards of care created by the big investors.. I also think medics should be duty bound to properly unearth autoimmune issues. The standard, 'Oh the treatment is just the same'. is woefully inadequate and verging on negligent. People should be informed they have an autoimmune response so they can at least be given an early opportunity to address lifestyle and other factors. How long does it take to mention peer reviews, basic lifestyle changes and minimizing common conditions that cause inflammatory responses. A leaflet would do. I suppose it would open up a minefield of questions from the unknowing ... yet we are dissed for Internet researching. I wonder if some surgeries have broad spectrum autoimmune practice nurses attached, or support groups. Or they could just refer support from here..pronto
I have put other because prior to Armour I was all the above (except hunkydory). I do have other conditions, but now, as far as thyroid is concerned, I am indeed hunkydory.
fine because I went to a private doctor, take the supplements he suggested and buy NDT from America.
Slightly overmedicated - trying to sort this out. Better than that awful hypothyroid slump
What is NDT please ..???
Desiccated Thyroid, commonly referred to by patients as Natural Desiccated Thyroid because it's a thyroid medication made from animal thyroids rather than synthesised.
You might find this article the main Thyroid UK website helpful
thyroiduk.org.uk/tuk/diagno...
Can I ask why you went to a private doctor. Was it because your GP didn't understand.
Is buying NDT from the US difficult?
Please could you v kindly PM the details? Feeling desperate as have seen a plethora of different Drs and still feel dreadful every single day!
I try to push myself to keep going. I changed my diet by cutting gluten and dairy products, that seem to help.
Was terrible on levothyroxine but now on NDT and it's made all the difference!
Since I have been diagnosed with my underactive Thyroid I have been nothing but ill with one thing any another 
I put other because I was almost housebound before finding treatment but improved greatly after finding NDT. I have continuously found things since NDT that have now put me back to normal & in fact better than what I considered to be normal as I had been unwell pretty much most of my life.
I'm not being treated at all and have a range of symptoms. My doctors will only treat when my thyroid 'dies' and completely stops functioning.
This sounds terrible, are your GPs not concerned about the damaging effects? Mine were very concerned so in your shoes I'd change GP.
To be fair my GPs (it's a big surgery) are told by the endocrinologists what to do and they just follow the protocol. What treatment were you offered thyr01d? - clever username by the way
Hello again, the answer about what I'm given is the usual, levothyroxine but I think Granny 56 has made a really good suggestion for you, hope it helps.
DrRebecaChicot, I would suggest clicking on the link posted by Redapple downloading the pdf, print it out and take it with you to your next GP visit. Untreated thyroid disease can lead to all sorts of nasty things. Good luck!
Thanks Granny56 - I will do I had a private consultation with an endocrinologist today and she said that as my TSH is over 2 she would consider thyroxine treatment but I was worried as she says that when you start it basically stops your thyroid from functioning itself (I have hashimoto's thyroiditis but they don't think I'm officially hypothyroid at the minute and they say I might never be...it's all very confusing). She also said that I shouldn't bother being gluten free (I cut it out 12 months ago) as it was easier to pop a pill (thyroixine) and I'd feel much better. They don't seem to go in for non-pharmaceutical management! I'm just trying to see redapple'd PDF.... thanks so much.
Please do what you think is right re gluten. I am reading Brain Maker by the American neurologist David Perlmutter - the gut and its health is the most important thing. Datis Kharrazian - Why Isn't my Brain Working - another good read. As you have been gluten free for so long I would stick with it. I also went GF around 18 months ago in an attempt to reduce anti-bodies.....but am also trying to take care of my brain
I will stick with the gluten free thanks Marz (my daughter has coeliac disease so I do it in solidarity with her too and I'm used to cooking gluten free...it's only occasionally I crave nan bread etc. but I'm not really into cakes and bread...more of a protein and fat fan). I have been told that I may need to try dairy free too which I will find much harder than gluten, that and taking enzymes - I just wish I could see good double blind studies showing a change. My endocrinologist then really confused me yesterday by saying she didn't think the thyroid peroxidase antibody was actually doing my thyroid any harm and it must be some other factor????
I had brain fog for the first time last night....though maybe I was just super tired. I don't envy you I just had to go to sleep at 6pm and when I woke up I was 5 pounds lighter so no idea what's going on with my metabolism and hormones! Good luck in your management of your thyroid problems.
Not sure I understand your reply. I endorsed your GF choices. I only added the additional information re the books as there is always so much to learn....
Yes I am managing my thyroid problems well thank you. Basically I saw Docs and Endos in the very early days of 2995 - and now take care of myself. No confusion that way
Sorry - I meant to say that I agree with you...I will continue to be gluten free despite my doctor saying not to bother
If you are self-medicating to you buy NDT from the internet or can you self medicate with other things?
I will take a look at the brain books too.
thanks x
I retired to Crete in 2004 and after a lifetime of battling various conditions I was diagnosed with Hashimotos in 2005 ( you can view my EDITED profile by clicking onto my name ! ) All the TFT's were in range but high anti-bodies - so was started on treatment of T4 - 25mcg. This was increased and over the next 5 years it was increased to 75 which I was not able to tolerate. T3 was added in and 4 years ago I went T3 only and made huge improvements. Greeks are very good at diagnosing thyroid and do the full profile with a scan on day 1. Saves lots of the angst I read about on this forum. We can also buy all medications OTC including B12 jabs - without a prescriptions. Freedom of choice is all part of the healing plan.
I started teaching yoga at 65 and have 2/3 classes a week - now full and have people waiting to join ! I also run our letting business and am generally kept very busy at the very young age of 69.... I have three daughters and 5 grandchildren - all with various health problems. Due to the way medicine is run here I think both hubby and I are far healthier than the rest of the family who cannot seem to find the correct treatment - and for them the Doc knows best - and so they suffer Hubby also has Hashimotos !
Long may the good days last !
Wow what an amazing and inspiring story! I love Crete (studied turtles there) and the medical system seems much more enlightened that over here. I had no idea!
I will read your bio but interesting that you found T3 best for you.
Thanks for explaining x
Oh My. Kudos for Greece!
'Greeks are very good at diagnosing thyroid and do the full profile with a scan on day 1. Saves lots of the angst I read about on this forum. We can also buy all medications OTC including B12 jabs - without a prescriptions. Freedom of choice is all part of the healing plan.'
Trust me, popping a pill is not the answer. Obviously your endocrinologist is the expert and will hopefully act in your best interests. However, if you read the posts from those will a definite diagnosis receiving treatment, you will soon realise that you need to become the expert over your own situation.
The goal is not to prove the doctors wrong instead to question and if necessary challenge decisions that do not make sense according to the published literature and what your own body is telling you. Information and communication are the key, so happy reading.
I hope you feel better soon.
Thanks Granny56, I'm totally with you on the need to take control of one's own treatment and knowledge. When my daughter became ill I was such a lioness as the gasteroenterologists had such archaic views. Somehow it's a bit harder to stick up for yourself in the same way but I have a science background so I am happy to research the area...and this forum is full of so many informed and experience thyroid sufferers which is such a wonderful support. I don't really want to take any thyroxine (dessicated or synthesised) until absolutely necessary. What would you recommend in terms of treatment for hypothyroidism...if I get to that point. At the minute my TSH is between 2 and 2.8 and I currently feel ok and walk around 10K steps a day, play netball once a week as well as working and having 3 children?
So, your thyroid is struggling, according to your TSH. So, your doctor is wrong about the TPOabs not affecting it - or does she have some definate idea about what else it could be? And if she thinks it's 'something else' (they all say that!) then is she doing other tests to find out what it is? If not, I would go with the theory that it's the antibodies, myself. lol
The protocol is to start on Levo. And the majority of people do very well on Levo. But if you Don't do well on it, it's usual to add some T3, next, as NDT is difficult to get hold of. That often works.
For myself - I have Hashi's, but have had it so long, my gland is now destroyed - I found I couldn't tolerate any form of T4 - I certainly couldn't convert it. But then, a lot of Hashi's people can't. I'm best on T3 only. Just a pity I had to find that out for myself after over ten years of struggling with Levo and NDT! Oh well... Hope you have better luck.
Thanks for explaining greygoose. Could I ask when you think your thyroid packed up? I was diagnosed in my early twenties and am 42 now and am not sure what my prognosis is.
When it packed up completely? Difficult question. I was diagnosed at the age of 55, 15 years ago, and it hadn't packed up then. My TSH was only 11, but I had very high antibodies. So, after that I was on varying amounts of thyroid hormone replacement. Until August 2013, when - for reasons I won't go into - I stopped taking my T3 completely. I stayed off it for about 6 months, until I started to put on weight, when I found my TSH was 35, and went back onto T3. But there was a tinsy winsy bit of T4 in my blood, so my gland must have been putting out something during that time, even though it had been pronounced dead in 2006, but without any tests being done. That is to say that test were done, but I was taking Levo at the time, so not a true test of my gland. So,... somewhere between 2000 and 2006, that's all I can say.
I sincerely believe - knowing what I do now - that had I been diagnosed when I first started having symptoms as a child, things could have turned out differently. But doctors prefered to tell me I was lazy, greedy, stupid, slow... you get the picture - oh, and imagining all my symptoms and should see a psychiatrist! lol
Oh blimey, it's so frustrating isn't it (and heart breaking that as a child your illness was missed. My cousin had myxodema as a child but thankfully it was picked up as her Grandad was a very good diagnostic doctor). To have put our trust in doctors only to find out that they have let us down. I've had it for 20 years now and want desperately to protect what's left of my thyroid but the advice is so contradicting. I hope you are feeling better with your health now?
I'm recovering slowly, thank you. But no thanks to doctors! I self-treat. And as a doctor yourself, I would have thought you might have considered self-treating, too, during all that time. Don't you think that's an option?
Hi Greygoose, I'm a PhD rather than a doctor but my background is in biology so I'm certainly happy to look into working with a functional doctor to self prescribe.
OK, sorry, but still, you do have the brains to understand all this, and are used to researching. But when I said 'self-treating', I meant going it completely alone. I never see a doctor - they're dangerous! And I just can't do with the hassle about the size of my dose, my suppressed TSH and all the tra-la-la! I'm better off alone!
That's very inspiring greygoose - I hope I get to that stage soon so that I understand the endocrinology and more importantly I'd love to be able to manage my autoimmune disease by changing my diet, supplements etc. (I bought epsom salts this weekend to add to my hot baths and try to remove toxins that may have been taken up by my thyroid gland.
That's a very good move. Most people are short of magnesium, because the soil is depleted of it. And being magnesium deficient causes a lot of symptoms. But I'm not sure it removes toxins from the thyroid gland. Never heard that before.
I'm also not sure you can completely control Hashi's by diet and suppléments. It's Worth a try, though. And if gluten-free is working for you, that's a good thing. It did nothing for me. But perhaps that's because I was too far along when I found out about it. It was too late for my gland.
Also, if your gland is already partly damaged - which it appears to be, judging by your TSH - they you are going to need thyroid hormone replacement at some point. You can't replace hormones with vitamins (as a surprisingly number of people seem to think ).
I agree with greygoose. The only thing I would add is that when you become severly symptomatic, a scientific background won't help. Trying to remember what day it is becones a struggle. I hope you never get to that state.
You are lucky, you already know that your gland is struggling therefore, use your background to monitor your condition and fight your corner when the time comes. Don't leave it too late, cognitive decline can creep on without notice as your brain will use all sorts of measures to cope before going into hibernation.
Fore warned is fore armed!
Thanks so much for the warning. I remember one of my zoology colleague's thyroid packed up in the Amazon basin. She said her brain fog was so bad she couldn't add up 2+2 - it's frightening to imagine your basic thinking skills being compromised when you are trying to deal with your health and something as complicated as thyroid endocrinology. As you say, very important to be forewarned. I have a scan on Friday and blood tests on Thursday to assess Vitamin D, B12 and feretin but no-one has so far suggested magnesium and selenium levels so I got a good mineral supplement which included those recommended by the thyroid pharmacist (I follow her on Facebook and her articles and guest articles are good).
You seem to be well informed including information from vicarious experience, so why all the questions? Are you testing our knowledge? I hope not, this is a serious forum where those with knowledge and experience help others to understand this debilitating disease, treatment options, social care and support.
No, I'm just a terrible question asker and I've never spoken to a group of people actually managing their thyroid health. I try to give advice too but I'm very early in my journey as my doctors have considered me to be non-clinical until October...happy to stop asking questions though but I've generally responded to responses rather than 'cold calling' people.
Forgive me if you feel that I have misjudged you. Please don't stop asking questions, we are all on this forum because we need the advise of others. Sometimes the answers are not to be found in science, rather in common sense born from individual experience.
I hope your test results are satisfactory and that you have found enough information on this forum to help make decisions about your future. Good luck!
Thanks Granny56 - I have already have got lots of information and food for thought. Good luck to you to!
We often talk about magnesium and selenium on here, because they are so important.
How much of each is in your supplement. I really Don't like these multis because they rarely contain enough of anything to treat a real deficiency. And Selenium should be tested first, to make sure you need it, because too much is bad. Magnesium testing is not very conclusive, so we tend to just take some.
Are you talking about Isabella Wentz on Facebook - hope I've spelt that right! I follow her, too, but I tend to take what she says with a pinch of salt (pink Himalayan, of course). I Don't always think she gets it right. (Presumtuous of me, I know, but I'm like that! lol)
Thanks greygoose, I got the liquid Selenium by Biocare which is 180µg which is 327% Nurtient Value Reference and I nearly got their magnesium but was expensive and there was more in this multi:
Mineral M3 which contains
Magnesium (Taurinate and Gluconate) 300mg (80% daily value)
Zinc (Picolinate) 15 mg (150% daily value)
Vitamin B6 11 mg (786% daily value)
Malic Acid 300mg
I'm terrible at remembering to take supplements....I need a system!
I've also been recommended enzymes but I have to speak to this metabolic nutritionist person that has been recommended so not sure if they are CoEnzyme Q10 type rather than e.g., digestive enzymes?!
Does this seem enough?
Good to know that I shouldn't totally accept what Isabella Wentz says too. It's very easy to fall for gurus when you are desperate for a source of information you can trust
That sounds like rather a lot of selenium. Best to get it tested, to be safe.
On the other hand, that's not much magnesium. But may be ok with the Epsom salts. See how you go.
I'm not a fan of taking isolated B vits, because they all work together. But, maybe , when you get your B12 results, you'll find you need to supplement that. In which case, you should take a B complex with it. In which case, you might be getting too much B6 - it doesn't agree with eveyrbody. But, one step at a time.
oops I'd better check as I also have a vitabiotics immunace immune system supplement which I think has selenium in it. My first job is to remember to take them. Thanks for the tip about the B vitamins...it's all so complicated!
I cannot agree with Granny56 enough. DrRebeccaChicot - Like your colleague, I suffered suddenly with severe cognitive problems. Scary stuff and all the research/academic background in the world doesn't make a scrap of difference. I know from experience. I didn't know my name, couldn't add 2+2 and the year we were in, well, there was no chance I could manage that one. I had been declining at work and a lot of the work was computationally and mathematically challenging so I had no chance when I look back. Missed deadlines and papers written were half done. Total nightmare to be honest. I still have a large collection of unfinished projects and inventions - someone will have already done some of them ha ha! Never mind that's life and my new project is regaining my health after years of neglect in favour of work. No more 14 hour days and I'm actually happier for it, although I do miss it all.
Like you I have a PhD (not in medicine). I thought I was untouchable back then at the top of my game (but not annoyingly cocky 
). I felt great. How things can tumble!
You have an advantage that you're aware of your problem now. I didn't. Things just got worse and worse until I was housebound for 4 years. Still not right yet but able to work from home now.
EpicSwan it's really kind of you to share your story with me. I think I really need to take note. I am realising that I am not invincible and I need to support my health, not burn myself out and empower myself with good information. Sadly, I always put my health as lower priority than my children (understandable) and my work (insane).
I'm so sorry to hear how ill you got, it must have been very scary to get so physically and cognitively ill.
Luckily I can work from home too and will take all this advice as a wake up call....
DrRebeccaChicot - no problems! Yeah I'm the same with my kids (now) but when they were younger (particularly my daughter now 15) I was obsessed with work, that's all I did. Work. Work all day and all night. Bit sad really, on reflection, and I do regret it massively but it's what made me tick. I loved the pressure. I thought I was doing the right thing that would set my children up for the future. I was warned by family and colleagues about working all the time but I ignored them as I felt it was more of a hobby than work.
Just take things easy and don't break your body is my advice. Nothing's worth that as without your health you cannot function and do much work anyway.
It's good you can work from home also, it's certainly helped me. What do you do?
I'm slowly but surely getting back to normal but my concentration stamina is still lacking compared to before all this happened.
Thanks for the advice EpicSwan. I ended up leaving academia to work at the BBC making science documentaries but when I had my first baby she got a rare autoimmune disease called autoimmune neutropenia (luckily she's fully recovered but like me she's got autoimmune problems as went on to develop coeliac disease). So to cut a long story short I left the BBC to look after her and then ended up setting up a company with one of my director colleagues to produce visual baby care advice with expert groups (so e.g., St John Ambulance did the first aid and UNICEF did the breastfeeding...though it was mums who did the demos). Apart from when we're filming I can work from home so I'm very lucky...though in the early days I really nearly burned out and I think I had adrenal fatigue as I was fuelled by adrenaline, stress and anxiety...not good for the engine as I'm sure you know!
Great news your daughter fully recovered. Things like that put everything into perspective.
Sounds really interesting what you're doing. It is good when working from home is a possibility, apart from differentiating between home and work can be hard at times. But flexibility at work when you have thyroid disease is a real bonus.
We sounds similar as I also ended up leaving the academic world to start my own company.
Re adrenals - Anybody who says "it's only a bit of anxiety or worry" doesn't have a clue when it all goes belly up and your body fails! My family used to say that sort of thing and didn't understand what it was like. I definitely reached new extremes through Hashi's, that I hope I never experience again!!
Yes I agree EpicSwan - health is the most important thing, especially our children's. I'm sorry to hear that you've suffered so much with hashimoto's..and slightly nervous, I think I'm at the calm before the storm with the first flashes on the horizon that a storm might be coming. Hopefully I've got time to get prepared. Also good to good to speak to a fellow hashi-academic-entrepreneur
To be honest DrRebeccaChicot, this is just the tip of my Hashi's iceberg that I've described. But, and it's a big but, everyone is different and hopefully you don't experience anything similar to me and you will be armed with knowledge from here and other sites to keep you nearer to normal. That's what it's about, keeping as close to normal as possible without too much of a decline into oblivion. In my opinion anyway.
There are no doubt many other academics and entrepreneurs/business people on this forum that hide behind an avatar and username, as well as people from many other backgrounds. That's what keeps it interesting; the diversity and everyone's story is different to the next person, but we all share one common thing - a thyroid problem in some form. Or we're researching and trying to help others with thyroid disease.
Oh, and I also like to read the odd rant on here!!
Nice chatting to you. I'm starting to ramble so will stop now!
Thanks EpicSwan...yes I'm an admin on two forums we've created for my company. So I thought I was supposed to put my photo and full name up there for those members...but I seem to be the only one. A bit like being at a masked ball without the outfit! I wouldn't have known about this forum otherwise. It would be great if ours ever got as lively and informed as ThyroidUK but they are just little newborn forums at the minute with a handful of members. I'm hoping I won't have cause to rant after my scan this week...but I tend to find visits to the hospital to be very frustrating. Sounds like you have had lots of trouble with your hashis but it's great that you are able to try and move back to more 'normal' health and energy....long may it continue
DrRebeccaChicot - good luck with your forums!! If yours got as lively as this one you'd be buzzing. If I were in your position I would also put title and full name, and possibly qualifications, etc. People need reassurances about who you are and that you know what you're talking about. The rest of us can remain in blissful anonymity and hide
Good luck with your scan. Let us know how you get on.
Oh, thanks. I hope to get pretty much back to normal. Some days I don't feel too different to how I felt before this thyroid nightmare but it's so up and down, which means planning anything is difficult.
Thanks EpicSwan on the forum tips and I'll let you know what they say after the scan. Keep well
never ever forget that you should NEVER change medication until the full results are available ...... wait until you have the FULL test results so you can then decide where you will go from here [ and that includes supplements --- because they can affect test results --- ] ====== TESTS SHOULD ALWAYS BE DONE WITHOUT ANY OTHER PREDJUDICE FROM EITHER SIDE to influence ======
Yes point Alan, though I took my D3 for the week before I thought - though it would be good to know if it's led to a good D3 level. I'll hold off starting supplements until after my blood tests on Thursday.
I was in that position for a couple of years, it was almost unbearable as I have four young children and am on my own. Some days I could hardly get out of bed, I was so stiff and I pain, I looked like an old lady with arthritis!
I prayed that my TSH would rise ( I also had very high antibodies from a blood test done for another condition, thank God for that) and eventually my TSH rose to 5.11. With the symptoms and antibodies that was enough for GP to trial Levo.
Your symptoms should be enough for treatment to start. Keep going back to the GP and keep a a careful list of daily symptoms. Temperature can be useful as well.
Good luck
Natural Dessicated thyroid, used successfully for 100 years until Big Pharma saw an opportunity. Brands are Armour, Erfa, Naturethroid, West throid. Has both T4 and T3 and is bioidentical. Hillary Clinton is on Armour.
not being treated yet as tsh not over 10 (7.89). Have B12 deficiency too (which is being treated).
I have to put my improvement down to Armour Thyroid and not Levothyroxine.
I am now motivated and enjoying planning things ....plus losing some weight at last.Still have muscle aches but going gluten free is helping.....not quite able to put hunky dory
yet,but getting there.
I have been diagnosed with fibromyalgia which makes me suspicious because so many of the symptoms are the same as interactive thyroid.
IS THERE ANY DOCTOR IN GB WHO WILL PRESCRIBE NDT?
I'd like to know that - when ever I mention it they just smirk....
In still symptomatic despite now taking ndt, however, much less symptomatic than I was on t4 only.
Not an NHS doctor, and only a smattering of private ones. Most people posting about it here will be self medicating.
Having had lots of serious illness throughout my life - Gut TB - Crohns and so on - I have always blamed illnesses from my 20's for my huge fatigue in later life. So looking back I am confused as to what condition caused what. On a positive note - since having the Hashimotos diagnosed at 59 in 2005 - I can say I have made great progress and on the way to wellness. Shame about the date on the passport ! Feel better than I have for years....
T3 - VitD - B12 - have all helped with this journey - not forgetting the yoga 2/3 times a week....
That's good to know as I've been booked in to have my Vit d and B12 checked but they are still resistent to T3 (and my levels were okay a couple of years ago when I paid privately for a test).
Glad your T3 levels were OK - do hope that means they were near the top of the range ! B12 needs to be at the TOP of the range too - to prevent cognitive decline and VitD too. Why not have your Thyroid Tests done privately through Thyroid UK so you can see the whole picture. Things can change in a couple of years. I am fortunate to live in Crete where full testing is not a problem and scans are part of the diagnostic process for Thyroid. All my TFT's were in range - anti-bodies high - scan revealed nodes. My GP here welcomed me to the Hashimotos Club and treatment began !
Not on meds, doctor says there's nothing wrong with me, but dry skin, painful digestion, insomnia, aching joints and muscles plus extremely painful Achilles if I do anything more than a slow shuffle say otherwise. Apparently this is due to sciatica! I was a runner (fell, trail, road and track), but haven't been able to do anything for a couple of months and have gained one and a half stone. When I was on levothyroxin I was fine, then doctor said I was better and took me off them, three years of deterioration have followed, with some phases worse than others. Currently in constant pain in legs, whereas previously it was just a few minutes after I got up in the morning. Not housebound, not by any stretch of the imagination, but considering I ran a marathon up a mountain earlier this year it sure feels like I am.
Sounds like you need a second opinion fast. There does seem to be overlap with other auto-immune diagnoses e.g., fibromyalgia, ME and hashimoto's thyroiditis. No sensible doctor can say there is nothing wrong with you with those symptoms...what he/she means is that they cannot diagnose the source of your 'dis-ease' - and they need to try harder and do more tests. How are your Vitamin D3/B12 levels?
Thanks for the support. I've just registered with a new GP. I went to my GP for 7 years and all he said was he didn't know what the problem was, come back if it got worse. Went back once when he was aways and saw his locum, she "had a hunch" and I had my first ever blood test which identified under active and I was put on thyroxin (that was the first time she'd eve seen me). For the next 6 and a half years I was fine, then the chemist played around with the brand, changing it each month, the result of which was such intense pain in my achilles I could barely walk, plus the other symptoms came back too. Got a prescription specifying the brand I'd been on previously and I recovered. That's when the doctor decided on an "experiment" and took me off them for a month. After that month I hadn't deteriorated any further so he said I was better and took me off them for good. Two or three months later the symptoms started to come back, since when my diagnoses have been trapped nerve, slipped disc, pulled muscle, "it's the running causing the pain so stop running"and now scitaica.
No idea about B12 etc, can't see my results online since changing doctor, but I'm there next week for my first appointment and will be asking them to change the settings so I can.
Fingers crossed my new doctor will confirm I have an under active thyroid and put me back on the thyroxin (which worked previously), or identify something else causing the symptoms. Roll on next Thursday morning.
Good luck!
Good Grief! Taking you off meds because you are now better! I take it she then explained why you had transient hypothyroidism or something else other than thyroid disease that was lowering your thyroid hormone. And I really hope it wasn't simply because your levels were in range as opposed to some clever knowledge she had about kick-starting your slumped but undamaged thyroid back into action. If you haven't already done so, post this info on another separate thread to get the admin on your case. Good luck with the new doctor.
No, he (not she) just said I didn't need them any more because I was better - no explanation, just that was was better, I was "always borderline anyway". My TSH was 5.65 at the time, which I thought meant it was high? And despite going back for almost three years with the same symptoms he says I'm fine and comes up with a different diagnosis for the leg pain every time (pulled muscle, slipped disc, trapped nerve, "it's the running, stop running" and now sciatica). Each time I went in I asked the direct question, how does a trapped nerve cause dry skin or painful digestion, but he hasn't come up with an answer. Pity I never managed to go back when his locum was there, she was the doctor who arranged my first blood test the first time I saw her, resulting in 7 years on thyroxine which worked wonders. Slight aches in the achilles when I got up in the morning which rarely lasted more than a few minutes and the odd recurrence of uncomfortable digestion, but other than that I was fine until the chemist started faffing around changing the brand they gave me, culminating with my doctor saying I was fine and taking me off them, and it's been a downward spiral ever since. I wasn't too bad until earlier this year, and have since spent most of the time on painkillers. But fingers crossed, first appointment with my new doctor on Thursday.
This is only my humble impression but that TSH looks high to me. You will see that from other posts, and info available elsewhere, and ideal is below 2.5 or even below 1. Your symptoms sound classic hypo in my world, so I think you have guessed correctly.
Good luck, and keep posting on here.
I'm on treatment my hairs falling out loosing weight is a constant battle even though I eat and exercise I can't work full-time so I'm financially disadvantaged
Tired all the time cannot work full-time financially disadvantaged weight loss problems hair problems emotional issues sleep issues and it goes on and on like a vicious cycle Dr says blood results are ok though?!
While on levo I was household depressed mentally ill and in pain tired doesn't cover how I felt I felt like I was dying then I found t3 tiromel a year ago now I'm back at work and 95% better
I was fatigued before treatment (TSH was 22!) but had no other symptoms. I am fortunately hunky dory on 125mg of levothyroxine.
I was on levo and T3 and still tired all the time so decided to self medicate with NDT. It has made such a difference and I feel nearly back to normal now.
To poll questions are too unspecific to answer. For instance - has thyroid medication made a difference? What medication, how much of a difference?
Because of the impact of my underactive thyroid, I have had to out myself at work to ask for a reasonable adjustment. After some difficulties I finally got an appointment with Occ Health nurse who agreed condition meets the equality act. I have now been given adjustments to give me more flexibility around working hours and the option to work from home from time to time. This will be a huge improvement to my wellbeing.
Maybe a future poll around equality act and reasonable adjustments.
Interesting Laineyz I am struggling at work at the moment and about to ask for a reduction in hours..... Already know what the response will be! Be great if under active Thyroid could be included on the equality health act.
From my own research it is covered by EA and my Occ Health nurse agreed. The problem is getting a reasonable adjustment and if your employer considers it reasonable to implement. I'm sure a request like you have to reduce your hours is a straightforward request for most employers and seems reasonable.
Good luck.
I am beginning to mend thanks to a great functional medicine genius and copious amounts of cash using all the family savings and pensions? The NHS would see me bed bound! And eventually dead.
I had no alternative but to vote other. I have multiple comorbidities but not bed bound which cause fluctuating symptoms with variable levels of debility. Since many of my illness' present with similar symptoms to thyroid disease, deciding which symptom or sign belongs to which condition is almost impossible. Polypharmacy for these conditions means that improvements or deterioration is also difficult to pin point or attribute to a particular medication.
Oh if it were just so easy
Hypopotamus - What medication, how much of a difference?
If you are referring to my post I have said the medication is NDT and I said the difference is that I have gone from being tired all the time to feeling nearly back to normal. You have obviously not read my post properly.
I have joint pain,stiffness, bloating (even though gluten free), weight gain, and 'glue-like' lumps on skin which are very sore, can taste shampoo in mouth a couple of hours after washing hair and constantly feel as though I want to pass urine. In the past five years thyroid medication has got very much worse in this country (UK).
I am blessed with a positive outlook on life but am so frustrated by the bog-standard blood test for thyroid function. Our endocrine system is so complex. The test is so grossly inadequate for assessing such a complex aspect of our our health and well-being.
How can we, together, bring about effective change? So many people are suffering, big
time, mentally and physically.
Opunake4616, I absolutely agree with you, I believe in the power of the people and would very happily join with others to bring about change, but have no idea what or how.
Anybody got any suggestions?
Maybe a rally?
I came off my medication 2 years ago approx., because it made me feel ill. I still have not got enough energy a lot of the time, and also still have numerous symptoms, but at least I feel human and as I am older now, am not sure how I should feel at my age (I was on T4 medication for 20 years) I had a taste of wonderful energy when I first came off the T4 (50mg), but as my endocrine system stabilised my energy dropped back down and my TSH now reads 4. I am not really unhappy in myself, but would love to be better and lead a normal life. I find it difficult to understand what I can now do to improve things. Can't understand a lot of the technical things I read about the thyroid, so confine myself to trying new diets and some exercise that doesn't exhaust me.
Have you tried NDT ? A small amount may help you feel better.
After six months of treatment I am finally beginning to feel more well. I am on 100mcg levothyroxine, also supplemental Vit D which is ongoing, as I was very deficient. I also received an iron infusion in June as I was very anaemic. What has made the most difference is finally having a decent dose of Levo, I knew things would not improve until at least 100mcg day.
It has been very frustrating to suffer the debilitating exhaustion, falling asleep, joint and muscle pains etc while waiting for the dose to be raised again by the GP.
My TSH was up to 5.11. I want to try a furthe 25 mug but this will depend on the GP agreeing and she only goes on the test results.
Have you tried adding T3, I found it made so much difference.
hi where do you get it from and how much do you take do you still take the doctors levothyroxine thanks
Hi susku12, I haven't broached that with the GP yet. I head enough trouble persuading her to try Levo after raised TSH, many symptoms over two years and the very high antibodies. I am finally at a reasonable dose so will discuss this next! Softly softly!
Thanks for the nudge though, it is worth considering.
I have flare ups which leave me housebound. Not sure if they are thyroid re latest or other autoimmune issues.
I'm hypo. Though I'm recovering slowly, it has effected me badly. I developed severe depression, near crippling anxiety, constant fatigue and brain fog, insomnia, muscle and joint pain, my periods stopped and Im nearly always ill... The list is endless. Physical, psychological, even financial. At my last blood test my THS levels were still above 13.4, just barely lower than my free T4 levels. I don't know if it's hashimotos, and I'm not being referred to an endo. Though I am getting slowly better, I still struggle to leave the house without company in case I have a panic attack. I'm kind of living between doctors appointments at the moment, trying to get well enough to go back to uni.
Aww you totally sound like me!! xx Your not alone!! xx
I was diagnosed as overactive 3 years ago and because I have a heart condition and have had mechanical valve fitted my endo said it would be safer for me to be underactive so I was given rai in march this year.i wish I had never agreed to it as I have felt worse in these last few months than I ever did while waiting for my heart op.despite them saying that from my recent blood test I am only slightly underactive I have been suffering with all the classic symptoms...hair is very wispy and falling out .I ache in every joint which is also made worse because I was born with deformed bones on both elbows which means I cannot rotate my forearms at all so have arthritis in shoulders and hands..and also my right ankle bone is at an angle which has resulted in arthritis and tendonitis I have had a constant headache since the rai and have memory loss and fuzzy head.from time to time I get a very unsettling inner tremor which I never had when overactive.they are in the process of finding the right level of thyroxine to correct the loss of thyroid function and am currently on 125 me a day.I watch what I eat carefully but have still put on 2 and a half stone this year which puts further strain on my joints.It is so depressing as I can't see an end to it
I have read that some people cant convert T4 and it builds up in our systems and that is one reason why we dont feel right. Would you try some T3 or NDT which has T4 and T3 in it.
I was housebound, and needed at least 20 hours sleep, I ached all over, like a bad case of the flu. I think it didn't help either as I have osteoarthritis.
I lost my 1st job, due to long term sick leave. I was left untreated for 8 months, the docs or hospital didn't tell me and stated my blood tests were negative. (I only found out as I became a member on here and after reading about getting your ranges, I asked for mine. I was at a range of 13.5) and then it shot up to 28.
I went to the docs again crying my eyes out, very angry and came across as a crazy person. The docs put me on antidepressants and referred me to a mental health nurse. They checked my bloods again and finally advised me I had an underactive thyroid. I have since lost another job, only managing 3 months. And after nearly 2 years, I am still trying to find a balance. My last blood test 4 months ago was stable so now taking levo 120mg and 150mg on alternative days. I still get tired, have lots of other symptoms but I don't need 20 hours sleep and back 8 hours again.
Whilst on T4 for 11 years I never felt really well and often had to curtail a day out as I was worn out...over a year ago T4 stopped working and I became quite poorly...quality of life diminished...work was a nightmare...felt very ill...now I am on NDT and am feeling better, still undermedicated but it's early days..I am beginning to feel,like I have my life back. I am paying for my own meds as doctor/oncologist/Endo seem to think that T4 is the be all and end all despite the fact I became very ill.
I went on Thyroid UK website and printed off the letter and sent it to my doctor who in turn made me an appointment with endo and now on Levo and T3. Can you write to your doctor with the evidence on Thyroid UK would that help?
Please advise what letter etc xx ta xx
I can but try! Thank you...I spoke to my oncologist's nurse who was worried I had bought my NDT made in a garage somewhere!, I tried to reassure her that I am not a complete idiot when it comes to such things and have spent months doing research..she was very against it and decided she would have a look herself...then speak to the oncologist and discuss if the doctor can prescribe it for me..this was two weeks ago...no feedback as yet.
I have been reading that our ferritin levels need to be tested. I dont think my doctors have ever asked for them. Also magnesium helps at night re heart palpitations. Also potassium levels.
Starting to see some improvement in symptoms thanks to self-medication
Hello! I have many symptoms all of the usual I havent heard many say they have seriously painful mouth ulcers swollen tongue huge ulcers also on tongue and down throat. Watch out ready all my bloods are normal tsh and after asking for t3 was refused due to the endo not having heard of anyone with mouth ulcers or it relating to tyroid. Obviously before asking for t3 I had researched it and I know its related, I have started taking selinium, kelp and this automatically started to help my swollen tongue went down my ulcers started to lessen and then went completely so releived. I also confirmed that it wasnt just coincidence and when away on holiday I didnt take the supplements with me my mouth was sore within 4 days, I have been back 2 weeks and its still hasnt cleared yet but is improving its like it has to get worse first but is improving and I am confident it will go. does anyone else have this. I have had half of my thyroid removed and take now 100mcg daily
thinking of you all
Laurna
I had many problems and symptoms and it took 4 years to get a diagnosis, I self diagnosed and doc corroborated. I self medicate and mainly feel ok, of course never like I used to be but I have fibromyalgia, got it after the hypo.
Thank God for Thyroid UK would not have got better if it was not for it been sent n Armour for 6 years and felt a lot better have down days but thank you Thyroid UK for all your help
I find it interesting to see the majority of voters feel the same way as I do. Clearly Levothyroxine does not work for many of us. How can we get our GPs to take this seriously...
The worst effects of my celiac-enteropathy-Hashimotos-hypothyroid-hypoadrenal-hypoprotein syndrome lasted for about 21 years. It took 12 years to get a celiac diagnosis (from an ND, MDs couldn't figure it out) and another 9 years to figure out the right treatment. During this period, being tired was a problem, but being brain-fogged and unable to sleep were the worst symptoms. Because of the brain fog, I was forced into early retirement by a supervisor who was unable or unwilling to understand, and make allowance for, the effects of hypothyroidism and the other issues.
Just beginning Armour thyroid. So not too much improvement yet. But I've been on Levo for the last 11 years and leading very much a half life with a myriad of symptoms and never felt really well. So pinning my hopes on Armour now and having hopes for a future !!!!!!!
I would advise not to make any rushed decisions.When I told my Endo I had started to try some Armour thyroid he asked how long I had been taking it which was 3 weeks.He said that wasn't long enough and advised for me to stay on it for 3 months which will soon be up. I will have blood tests in 3 weeks time and then see him in November.
Hope you soon feel better.
Dare I say, since being on Nature Thyroid, I have felt the best for 21 years! So yes nearly there!
I chose other as I have other autoimmune conditions with similar symptoms.
I constantly ache, have fatigue which isn't helped by not being able to sleep at night.
My memory used to be fairly good but I have to make lists all the time now, speech is sometimes affected too. I am on 100 micrograms of Thyroxine and have not looked into the possibility of T3.
I try to keep upbeat but it is not always possible.
I'm tired a lot and find it difficult to motivate myself no get up and go among other things,just received my first levothyroxin prescription
Not really an unbiased poll question! It presupposes that everyone with Thyroid disorder feels rubbish. Lots of us feel fine now we're on meds. The majority of ppl with over/under active thyroid do fine on meds and just get on with their lives. The folk on this site tend to be the ones with more complex issues, so not a very representative sample.
I've been all of these through my journey... thankfully hunkydory now but was bedbound for 5 months when listening to my doctor.. As soon as I worked out he was an idiot, read all the books and papers and started self-medicating I got better, found a good and sympathetic private endo, got a prescription for the NDT and spend a fortune on supplements, drastically cut out all wheat, yeast, gluten dairy, nightshades.. and ... I'm fine.. long time to get sorted though... I guess it's as debilitating as you let it be... FIGHT.. and keep FIGHTING... campaign, beg, change your doctor, and keep changing your doctor or give up on doctors.. until you get what you need...
Can you take t3 tiromel with your levothyroxine I am on 50 mg s and tired all time, brain fog, headaches, aches and pains, constipation weight gain hairloss keep taking blood but don't up it asked if theres anything else and they say no
I had a 6 week trial on Levothyroxine which helped as I took 50mcg (the GP accidentally sent the prescription twice electronically to the chemist) after 6 weeks although I was getting relief from various symptoms, the dose was cut to 25mcg as was intended. My TSH was down to 1.5 and my T4 had increased slightly to take it off rock bottom. I am a month into the lowered dose and all the symptoms are back
I have been on Levo. 50/75 for over two years and I have to say I am fortunate because I do feel OK. I do get tired and need to pace myself but I do three part-time charity jobs and as well as training and looking after a horse and a house and I am 71 years old. I felt dreadful prior to treatment but I do not have Hashimotos anti-bodies so I wonder if that makes any difference. Love and good luck to everyone. Jax xx
I'm an "other" as well as being tired all the time. My problem is I don't know exactly how real my thyroid problems are, since they may be coming from medication. In fact, I'd been considering coming off Levo again because I couldn't see any improvement at all, and I really didn't want more meds. But now that I'm on my second prescription of 56 x 50mg tablets - i.e. in my third month on them - I have realised that some things have changed: 1. I don't overheat all the time, and that was a really serious affliction, very debilitating, and 2. My skin has improved hugely. It actually physically looks better, but the constant itching and dry flaking skin has eased off, quite noticeably. I am no longer scratching my legs till they bleed and my legs no longer look silvery white with dead skin, so, actually something seems to be working, for a wonder.
But the exhaustion, the incredibly sore muscles and joints, the gut problems - all still there. Of course, maybe they're not thyroid..........
...or you need an increase from 50 to 75. 50 is still a VERY low dose. Somehow it indicates you needed T4 as you have experienced an improvement on a low dose. Glad to read things are on the up
You could be dead right, Marz. I've had another thyroid test taken, so everything will hang on that. If it's back to normal I doubt any more Levo will be forthcoming!
...if they do stop your T4 - I think you will have a cause for complaint. After all it will be the Levo/T4 that has brought to the euthyroid state....
Yes, I thought that, but my doc is very unpredictable! Anyhow, we'll see what the Levo's done and hopefully we'll be able to make a half-intelligent decision on it. But as my doctor said in exasperation the last time I saw him, "You're always on the borderline!" Hah - he should try being the person living that...
...does he have borderline pregnant women too ? Take care of yourself and ignore this stupid man. The further away from a doc you live the healthier you will be ! Think they were talking about the Hunzas at the time !
I was super tired all the time....till they got the right level of meds.. Plus I learned i felt better in the lower range when tested, no higher than 3.0..usually way lower than that actually! They say the norm is up to 5.0, and Id be in la la land if i was there...and quite chubby, with thin hair...So i really watch it, and get tested often...Some GP are old fashioned about it...Im in Canada...
I was lucky and got prescribed T3 here in Germany (where I live, but I am British). It has given me my energy back! I feel as if I am almost back to normal, but I have only been taking it for seven weeks.
Can I ask which region? I work part-time (when I am not asleep in Bayern so my care is shared between U k and Germany.
I'm convinced that my poorly treated hypo has led to me developing Fibromyalgia
Ever since my Thyroid went sluggish I have never been well, for the first 5 or 6 years I had infection after infection and these took sometimes 4 lots of antibiotics to get rid only for it to come back a week or 2 later. I have since been diagnosed with R/A, Crumbling lower spine, scoliosis, ME/CFS, Fibromyalgia Anxiety and now Depression. I stay in bed all day everyday due to exhaustion and pain. I am on 100mcg along with morphine and lots of other meds but 10 years on I am worse than ever.
Not only do you have the symptoms, but it makes you feel anti-social, so you don't go out much and making contact with the family is difficult.
I've read lots of comments on this forum and it's clear to me that this is a very under researched and misunderstood illness. It's far more more complicated than just 'getting your levels sorted'. So many other factors come into the equation and GPs do not seem to be equipped to deal with or fully understand them.
lynmynott,
These polls are a FANTASTIC idea and I hope you do more. We could find out if all people on L-T4 have a physical/behavioral trait in common, e.g. for a given side effect are we all vegetarians, do we drink too much alcohol, do we stay up too late. Or, for example, how much effort was put into finding the exact dose which worked for the patient, or is there a brand of L-T4 gave no debilitating side effects.
I am quite sure you can think of many other factors which may produce side effects.
Great idea, do some more!
Been told I have an underactive thyroid and been on thyroxine for over 15 years im taking 175mcg a day. I have no idea what my T3 or T4 levels are I just have blood test every 6 months to find out if thyroxine at the right dose, it is increasing in the amount of mg I take. I have a number of other illness’s Hughes/antiphospholipid syndrome. fibromyalgia, chronic fatigue syndrome. It seems the symptoms I have can be linked to a number of them. Weight gain, painful muscles and joints, Dry hair which is falling out, also im loosing hair from my eyebrows and eye lashes, Very dry skin and brittle nails, dry eyes, dizziness, excessive tiredness, insomnia, High Cholesteroland, high bloodpressure, anemia, and the list goes on. Im taking medication for some of the symptoms I have but to me very little is changing .
As for the poll ...
yes im bedbound and
housebond on a number of days each week,
i cant leave home with out someone with me,
Im tired all the time,
Yes ive got many symptoms even while on treatment,
Rose4u - I do think it will help your situation if you had the full thyroid profile tested. You really do need to know where the T4 is and how it is converting into the ACTIVE thyroid hormone - T3. Maybe some of your symptoms could be alleviated with the addition of T3 - eg - raised cholesterol - blood pressure and many others. Every cell in the body needs T3 so if it is low then there won't be enough to go around. Also have you had B12 - Ferritin - Folate - VitD tested ? All need to be high in their ranges for you to feel an improvement. Sometimes it is the simplest of things that can improve health..... only chatting from my own experiences Please take good care and maybe time to have a good read when you are feeling stronger.....
I have been hyper, hypo, now hyper again age 13 to now age 71. I live a normal life for my age. I feel blessed. Never been diagnosed as Graves or Hashimoto's.
Self medicating and this site has helped me... I am better!
Actually although I'm hunky dory - at the moment and forever I hope - I know exactly why I'm here.
I'm here because I'm an administrator now and I love this group. I got so much help when I was first diagnosed with Graves and I want to do my best to pass on to others the support I was given. 😊
My meds are helping now that I have had the benefit of this and other sites and seen a private doctor. I can do much more but still struggle with low blood pressure and temperature in the morning. I have read that it takes as long to recover as it did to fall ill, so I probably have a long wait!
Hi i want to go to loo very frequently and have a cough doctor says nothing to do with Thyroid but who knows it couldn be, otherwise i am ok had half thyroid removed 2 years ago not on any thyroid meds anymore well at the moment
Have been on and off meds over the years. When on tend to go overactive after a while. It's a balancing act. At the moment TSH high but coming down. Feel it may have been caused by PET scan for another condition. Very disciplined with my diet - high raw foods and oily fish - not an approach for everyone as mine does normalise with time. Working
with a sympathetic GP helps.
So poorly asked GP to consider T3 as well but my request was refused. Bed bound at beginning of year, dragged myself to GP appointment where I suggested I may be B12 deficient because of Vagotomy and Jejunosotomy years ago - Bloods taken BUT they only did one test but according to the BMJ showed I was subtle with symptoms GP didn't agree so no interest in what was wrong with me. Did the usual came home and cried. Now self medicating with patches and vitamins which cost a lot of money but they do help. So many symptoms. Daughter diagnosed with Chronic Fatigue 4 years ago bed bound a lot of the time so I have to try and keep going. I never get a chance to rest. Some days I hurt so much I want to cry, both of us can be so bad tempered with each other on bad days. Try to get husband to understand what being Hypothyroidism does to me but ......
You sound like a poor soul, frustrated with your GP and exhausted with no spousal support. My husband also has no idea and absolutely no desire to be informed. I wish we could force them to take a course, perhaps this would put an end to them thinking we are lazy when we nod off every 5 minutes when our levels are askew.
This Forum offers great support so don't ever feel alone. Use the information you find here to help you to convince your GP that you need help. Be carefull with self-medication, some vitamins and minerals can cause problems taken in excess of what you need.
Hope you continue to improve, good luck.
I am well thanks to private Dr prescribing natural thyroid medication for me on private prescription! No thanks to GP
I am on a T3/T4 combo and although that has significantly changed my life for the better, I am having increasingly frequent bouts of 'not-quite-feeling-right'... I think there may have to be some tweaking in dosages, but on the whole I am in a much better place than I was on T4 alone!
what about a section for votes for people that have been successfully treated by ' current methods ' --- that may or may not be freely optional [ if they are not aware of them ] --- the poll to me seems like a stick ==== but no carrot ==== so it seems 1 sided only ............... a proper, correct poll would have to have ALL sides of the question WITHOUT PREDJUDISE to be a true reflection --- IN ALL or SOME of the cases ........only then can we reflect the real effects of this problem to those that need to address it for the suffer without the help that THEY need ..... just my thoughts ......alan xx
Well it's really difficult convincing my Doctor about the state of my hypothyroid symptoms are still there when he is always saying everything is fine after blood test. More than ten years now on T4 only medication nothing beneficial has taken place with my health. Can you please recommend any Doctor who would listen to me and help with other forms of treatments?
Thanks
Still no diagnosis as GP refuses to refer me to endo even after suggestion from Rheumy. ENT have now written to request this also so hopefully I might get somewhere. Not counting my chickens though!
After a heart attack and being undiagnosed hypo for years and years, now I recognise the symptoms, I had them all and the doctor wouldn't test me for thyroid even though I kept telling them my Mum had hypothyroid. I saw Dr Peatfield who put me on the course to wellness, I got the tests done he recommended and took the vitamins and minerals and came out of my big anxiety and stress levels. I have been increasing my levo myself after my doctor kept me on 25mcg. I then started having other symptoms, air hunger, breathlessness and a weird pressure in my back. So today, the big day has arrived, I have started on Thiroyd NDT after reading good reviews. I am taking half doses of each as recommended on this site and have just been for a walk. OMG no breathlessness, got home no pressure in back, already mowed lawn today, raked the lawn, tidied, and I am sitting here feeling hot! Did someone say hot, normally cold, but hot, hot feet, amazing. And I haven't nodded off this afternoon. WOW, I feel the brakes have come off. I shall stay on this dose for a couple of weeks and Dr P has asked me to ring him then. I have aged so much in the last couple of years being on levo, my hair has fallen out, my skin is dry like a lizard, my muscles have shrunk, I have tinnitus and I have wrinkles but at least I have lost a lot of weight built up whilst undiagnosed. I didn't need a prescription for Thiroyd and it arrived well packaged and quicker than advertised. So far better than I had hoped for. No-one else will do it for you, you have to take the plunge but slowly does it and get some back up from a natural endo, Dr P is my hero.
T4 affects my heartrate and even the smallest dose change makes me feel really ill for months until my heart settles down. In addition, there are other triggers that appear to affect the rate of absorption of LT4 or the release of adrenalin which causes a knock-on effect. ie pain relief that contains adrenalin, anti-biotics, infections, pain, life/work stress and other factors.
I was diagnosed as a baby when my Heel Prick failed and went through an amazing amount of blood tests. It only began to affect me around age 14. I am now 17 and my levels are 'normal' w/ 100mg of Levothyroxine daily. I sleep 3-7 hours on top of 8-9 hours a night with school in between. Although my levels are normal, I find a lot of symptoms still effect me. I am often cold and have an intolerance to heat. If I exercise, my fingers swell. I have kind of fizzy vision, hard to explain. Hissing in ears, I often feel like I have a bubble in my throat, like you constantly need to burp. Brain fog is the worst, I'd say as I often have to turn to a friend in the middle of class and describe a word or item in order to get the word I want to use. It's frustrating. It seems like a lot of symptoms when in reality, it's not many when you read the list of 300+ symptoms.
its funny peaple are still feeling symptoms after treatment/meds the higher my levels went up the higher my dose the worse i felt im on 200mg of lev feel rubbish
Not meaning to nit pick- but there a lot more than 833 on that aggregated plot! :/
Frightening cognitive symptems--very poor working/short term memory. Constantly losing the thread of what I'm thinking and saying. I forget names of common everyday objects like tea towels. If I'm calling a taxi and am interupted I often forget either the pickup or destination address, usually just for a few seconds sometimes a bit longer--these are regular journeys I've been doing for years! I'm also dyslexic, so my working memory was poor to start with. I was sent to the (NHS) memory clinic to check for early onset dementia, brain tumour etc..tests and scan came back negative thankfully. But they didn't understand my problems, and have greatly minimised them in the report sent to the GP--and who do the GPs tend to believe?!--not the patient!!..I'm just a malingering hypochondriac benefit scrounger.
My body can't regulate temperature..I break out in sweats in mild autumn/ winter weather--summer is a nightmare. Plus perimenopausal hot flashes.
Sleep. Bladder. Feeling 'spaced out' and dizzy, with varying degrees of severity.
In desperation, have paid for private help, including expensive tests which I'll be having shortly. I can't afford this ):
Im on 50 micrograms of Levothyroxine a day. To be honest I felt a little better for about 3 months my thyroid trouble got ignored for years. It was only detected when I was getting breathless and feeling really tired. They did a blood test and all the test to do with my heart because of the breathlessness. I am now in heart failure caused with my thyroid not being detected for years.I rang my GP yesterday because i dont feel well I am feeling so tired muscle cramp's forgetting thing and to be honest I am getting very low in mood. The GP has done a blood test today and now I have to wait for the result's. As i sit here typing this the sweat is running down my back It is getting very embarrassing as I work in a hospital and my uniform gets so wet people just look at me and say are you hot. I could scream sorry if I have gone on but I have had enough.
I vary according to the make of thyroid replacement I'm given. I do better on Mercury, less well on Actavis and very poorly on Wockhardt
Its like the flue minus the snot
