It seems to be a really debilitating condition for a lot of folks. I wanted to know people’s perspectives!
Can you still lead a successful and normal life... - Thyroid UK
Can you still lead a successful and normal life with Hypothyroidism?
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50 Replies
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Yes I believe you can, but there are a few troughs along the way!
in reply to Aurealis
Thank you! I have been taking tirosint and I see a light at the end of the tunnel. It’s so far been the best thyroid medicine for me!
I have just been diagnosed with hypothyroidism and it’s awful. No meds yet .. waking up most nights with a fever and bad back ache. Sensitive to light .. what symptoms and meds are you having Halfono. I am going for an MRI in the morning on my back .
Still lying awake at 3.30 😒
in reply to Ladybex
Ladybex I am with you on the insomnia and I understand! We’re all in this together and I had to wait over a year to get properly treated! I know things are going to be okay with you. One advice I have is be your advocate and sometimes you have to standup to your doctor about your demands. I have started treatment on tirosint liquid levothyroxine and so far it haa changed my life. I also like cytomel too!
LindaC in reply to
It is great to hear something working for someone - excellent!
in reply to
I believe that you still have your thyroid many of us do not, it's not easy to compare from an uneven playing field.
Lots of people also have other health problems too. If it were easy we would all feel well, pity!
Yes, this is all dreadful and it can go on for a long time BUT a lot of people do seem to get treated early AND levo serves them well. Best of! 
Incidentally, if you don't mind me asking, how long has your back been playing up? What was the criteria for sending you for an MRI?
Seasons greetings and a Happy New Year. x
Yes, if meticulously managed, it's not too much effort to have a very successful and normal life with hypothyroidism or Hashimoto's. You have to be your own advocate and completely understand your disease in order to manage it successfully.
Straying from your question, I noticed in your recent blood results that you have low WBC. This low WBC makes me wonder if you too have Hashimoto's? Hashimoto's effects the immune system and low WBC can be part of the disease. When the WBC gets too low, then your body is not able to fight off invaders and you are more susceptible to infections. If you have Hashimoto's getting sick only makes your autoimmune disease worse because we only have one immune system and it's all connected.
Where people have problems is:
1) If they don't do complete thyroid testing every time they test. Free T3, Free T4 and TSH are always tested together. TSH is not a thyroid hormone, so doctors who only use TSH to try to monitor thyroid function are completely off their rocker. Testing TSH is only effective diagnostically if it's done along with two thyroid hormone tests: FT3 and FT4. We see people only testing TSH, and sometimes only FT4, but they forget about the active thyroid hormone, FT3. Sometimes people get the Total T3 or Total T4 tests, which are completely worthless because these tests combine both free/available levels with bound/unavailable levels. Save your money because these tests do not tell you what you need to know: your exact free levels of T4 and T3.
2) If they do not stay on top of getting complete lab work on a very regular basis.
Labs are tested every 6 weeks and medication is adjusted every 6 weeks based on the results of those labs. This disease cannot be successfully managed if people are only testing once every year or so. Too much can change during that time and symptoms can get out of control. This disease also cannot be successfully managed if only testing every 6 months. At a minimum testing every 3 months will help you try to stay on top of dropping thyroid hormones before things get out of hand, but the ideal is testing every 6 weeks and adjusting meds accordingly until you have little to no symptoms. Once symptoms start again, test immediately if you haven't tested in the last 6 weeks.
3) If both FT3 and FT4 are not kept up at optimal levels. Both levels should be at least half of the lab range, but not much higher than 3/4 of the range. Why? Because too high thyroid hormones will give you undesirable symptoms just like thyroid hormones below half lab range will.
4) If one hormone is too high or too low in the range. Too high in the range will cause symptoms just like too low in the range will.
5) If they don't test both (testing one is inconclusive) thyroid antibodies to determine if the cause of their hypothyroidism is autoimmune. The tests are called thyroidperoxidase antibody (TPO/ab) and thyroglobulin antibody (TG/ab).
6) If they have Hashimoto's, but they don't try an autoimmune diet to help reduce symptoms. This is gluten, soy, and dairy free.
7) If they don't keep all vitamin levels optimal and regularly test their vitamins to make sure that they are maintained. This includes: vitamin D, folate, B12, a complete iron panel or at least test ferritin, red blood cell magnesium.
8) If they don't heal their gut health and maintain their immune system.
9) If not converting T4 into T3 and not supplementing T3 along with their T4.
10) If not treating any other health issue promptly. We only have one immune system. If your body is busy trying to fight off infections, illnesses and heal injuries, then this effects your thyroid and if you have Hashimoto's this will increase your antibodies against your thyroid. Your body cannot differentiate between increasing it's immune response against invaders and attacking it's own tissue.
These are the main steps in managing thyroid disease so that you can lead a normal and successful successful life. In many ways this is not any different than dealing with any other health issue and staying on top of that issue. The tests and medications are different, but the principles are the same: be proactive.
A brilliant summary!
Wow! Well done on that answer.
Nice summary! And I would add, consider taking Lerothyroxine in multiple split doses (increasing it by 10% or so for the doses taken near food ) because the peak free T4 after absorption of a large amount via the gut is unphysiological and can potentially unbalance feedback loops and diodinase enzyme levels which are critically matched to T4 levels for intracellular conversion of T4 to T3 (which is how most of T3 is supplied). This may be more Significant for those with a DI02 enzyme gene polymorphism so any doubts, test for that! Generally and despite the crude success of Levotlyroxine in treating hypothyroidism the received wisdom on dosing by single large amount away from food etc. is not physiologically normal and not necessary... The healthy thyroid gland does not produce single large doses of free T4 once every 24hrs but standard Lerothyroxine dosing does just that - Some of us may be more or less sensitive to this and there may be signiiticant individual variation in absorption transfer and uptake of T4 through the gut. So, for example, a 100mcg 6 am dose could be split into 4X 25mcg doses at 6,12,6 and 12 o'clock with an extra 5-10 mcg taken with each of the daytime doses. Since absorption can vary significantly anyway this needs only the normal trial and error titration with regular blood tests to establish optimal dosing amounts.
in reply to Hashihouseman
Have you heard of tirosint? I would like to know your opinion on it. I also take my thyroxine medication at night because I heard somewhere it metabolizes better at night. Thank you Hashihouseman!
Hashihouseman in reply to
Hi! Yes I read about this in some research looking at absorption where the gel capsules were less affected by food than the dry pills. It's also good to be able to get something will less fillers and additives! The levothyroxine I get prescribed is Wockhardt brand and this has Comparatively few additives (only one more than tirosint) albeit including lactose. I'd have to make another big fuss to get tirosint and because I'm not Lactose allergic I stick with Wockhardt and Liothyronine! Having the liothyronine on prescription Keeps me from rocking the boat
in reply to ShootingStars
ShootingStars. This is a wonderful explanation! Yes I am actually looking into the low wbc with my doctor and I think your right that it could be causing a lot of my problems! Thank you ShootingStars!
15 years ago I was diagnosed with under active thyroid, I get a blood test once a year and I take 125mg Levothyroxine. So far so good, apart from age related ailments I am fairly fit, when first told I did not want tablets, but a nurse told me that I would be very ill without. My sister the same as me, would not have any meds. for a year, she finally gave in as she felt so ill. Does it run in families, it seems it does with us.
Yes, absolutely! You need to do your research, be a bit assertive with your doctor sometimes, and post any questions on this forum , but you can lead a normal life. I’m nearly 70, was up to 200mcg of thyroxine and then developed such bad brain fog I couldn’t function. So I asked to be referred to an endocrinologist who kindly prescribed T3 as well as a lower dose of thyroxine and that helped for a few years but then some symptoms returned, so with help from the forum and a private doctor I switched to natural desiccated thyroid and am fitter now than a lot of people at my age. It was a lot of work but worth it. It’s also fair to say that there is no ‘one size fits all’. Not everyone needs to be on NDT, and I’m not gluten free but I do have hashimotos
I had my thyroid removed three years ago before that I was on no medication at all.
I have no other health problems. Before the removal I was walking, doing yoga everyday and swimming twice a week. Very fit for a 68 year old. I was a runner until the age of 65 years.
Now three years later without a thyroid I am still trying to find the right medication. I am on NDT but still have brain fog. I have tired various things Levo, NDT, T3 and the only time in the past 400 days that I have felt exactly right was one day earlier this month when I left of my NDT for 3 doses i.e. one and a half days. The next morning at breakfast I felt well again especially in my head. I started taking NDT in the afternoon and now back to square one again.
I truly believe that most people cannot possible feel well without a thyroid but have been in trouble for so long that they have forgotten what it's like to feel well. Also many people on here have other problems which interfer with their feelings of wellness.
in reply to
Bunnyjean Have your tried tirosint? Tirosint is the liquid pill of levothyroxine without all the fillers. I am on it and I feel normal again!
in reply to
I know about it already but I don't and never have any gut problems or hashis. I have found somewhere to order it but it was so expensive. No Gp would allow me the correct amount to feel well as I need my TSH to be suppressed thank you I am resolved to feeling like most without a thyroid
I have almost lost my hope for living like a normal human. Eveything I try to improve my health only works for a short period of time...
in reply to sunsetalley
I felt this way in the beginning but I realize their are other treatments out there like cytomel and tirosint liquid pill form of levothyroxine. It gets better!
in reply to sunsetalley
Exactly right.
The vast majority have no problems and are not on this site.
Hi HalfOno
Yes, but it's taken me a bit longer than I thought There have also been quite a few troughs along the way, but with awareness and careful management, I think I'm getting to grips with how I live.
I'm a hillwalker and would happily be up in the mountains every weekend. I was also a indoor rock climber. When hashimoto's and underactive thyroid hit me, I was unable to do much of anything, my main symptoms were extreme fatigue and brain fog, and as a researcher and hillwalker, that was quite worrying. Without going into all the details of a long story, I fought to get diagnosed, then I fought to get medicated on levothyroxine, and when that didn't work for me, I fought to get prescribed liothyronine or T3. That last was the game changer for me, and made such a difference to my energy levels and brain fog that I am back to hillwalking, going to restart indoor rock climbing soon and have almost completed a two year part-time masters degree in research. I couldn't have done those things a few years ago, no way! I can't just forget about thyroid issues though; I constantly research and stay on top of continuing symptoms by taking good supplements and eat a gluten free diet. It is worth persisting, and it's worth fighting for this.
Best of luck x
in reply to helen_m
Helen m I am in the same boat and I have recently fought to get properly treated for hypothyroidism. I am on tirosint right now and I am going to try cytomel in the future. Thank you!
helen_m in reply to
You're welcome
in reply to helen_m
How long did it take to get stabilized on t-3? What is your dosage? You said monotherapy of t-3 right? Sorry for all the questions!
helen_m in reply to
Sorry HalfOno - I'm on combination T3 and T4, and when I say stable, I do mean, in constant motion - increasing in winter and decreasing in summer. The cold weather makes me more underactive. It took a while to get sort of stable - at least 6 months, as my GP decreased my levo by half while adding in T3 and it made me very ill. They then increased the levo over a period of 6 months, back to where it had been when they first started (100mcg) That just shows that I was massively underdosed on levothyroxine only!
My current dose is 125 mcg levothyroxine (just increased from 100mcg to see if that has an effect) and 30 mcg of liothyronine (and might increase that slightly).
There is a book on Recovering with T3 - by a guy called Paul Robinson, plus he has a blog and website with information. Might help if you are on T3 only.
in reply to helen_m
I assume that you still have your thyroid?
helen_m in reply to
Yep
in reply to helen_m
Different playing field then! When I tired to post a question earlier in the year asking for answers from people with no thyroid and no other health problems I was told off by the administrator, but I wanted a level playing field start so to speak. This is a good discussion, anyway.
Yes of course it's possible, there are many more people living happy healthy and successful lives than are in fora such as this. For the most part of my being hypothyroid there was never a time when I wasn't working full time, being successful in my career (became CEO and then retrained to start a different career), was never a time when I wasn't studying (I started school aged 4.5 and then didn't have a single period of not studying until I was 58 yrs) plus I was also Chair or Director of a number of other organisations. I have a friend who is not only hypothyroid but who developed polio aged 5 months old and has been paralysed in the lower half of her body since then - she was very successful in her career, and still works on a self employed basis beyond retirement age, and has the most interesting and varied social life of anyone able bodied, that I know. Another friend - slim, attractive, young looking, was a full time teacher before retirement - thinks it's odd that people even think about being hypothyroid never mind talk endlessly about it, and she certainly doesn't. As with all aspects of our lives, attitude of mind can play an important part in how we deal with challenges. However, different people will have different combinations of conditions, will have different psychological and physiological responses to those conditions, and we must each find our own way in health as in life.
in reply to MaisieGray
I had to retire at 67, from a stressful but technically part time job that involved quite a lot of driving. I loved the work but began to realise that I could no longer give of my best, and often didn't feel safe driving (especially in the city in rush hour!) because of poor concentration. As the work sometimes involved talking vulnerable people for outings it was impossible to continue. I thought the tiredness, decrease in memory and fine motor skills (especially when trying to type) and difficulty concentrating were due to age. On going to the doctor, I was prescribed a couple of courses of iron and folate, which, had never been low before - not since I reached the menopause.
I was finally diagnosed with "Subclinical" hypothyroidism this year, eventually given thyroxine at the beginning of June, and working at getting balanced ever since. I am a lot better than before, but concentration still not brilliant on 100mcg Levo.
Getting there, but getting old at the same time, lol! But thankful to be as well as I am.
in reply to
Jnetti I appreciate you sharing and I wanted to say their is a new medicine out called tirosint and it’s liquid pill of levothyroxine. I tried and I have my memory and concentration back. I believe levothyroxine has nasty side effects due to the fillers. I would recommend asking your doctor to try tirosint. Or add cytomel to your t-4 medicine for energy!
in reply to MaisieGray
MaisieGray, I really believe your statement has given a new found hope. I have some other health issues and hypothyroid and I found recently a medicine which I know works great tirosint liquid levothyroxine.
MaisieGray in reply to
Hidden You are very welcome, and good luck! It's great to hear that you are doing well on Tirosint. Long may you continue.
This forum isn't going to be a great representation of people living with thyroid disease really. At the end of the day, the people that hunt out the forum are generally the people who're newly diagnosed, or under-medicated. When they get well enough, they often stop posting, or won't come by frequently.
in reply to Cooper27
Cooper27 I appreciate your response and it gives a better understanding of people’s perspectives here from newly to undermedicated.
Reallyfedup123 I want to say this is good insight to my question that yes it’s a possibility to regain an ability to thrive. I think your right with current treatment that it makes things difficult. I have tried tirosint and cytomel both medicine help me.
I was diagnosed with an under active thyroid and was put in Levothyroxine 25mg but within 2 months of taking it I was quite ill. I had very dry gritty eyes dry mouth backache and came off the Levo. Since then my bloods have been up and down and I have developed this very bad backache which is like a burning pain . Had an MRI scan that ruled out anything nasty but still have it. Dr said that to go back on Levothyroxine but try a different brand ?? I'm at my wits end . He's given me tramadol for the pain as codeine not working..
Now he's giving me amitriptyline 10mg ???
I totally agree with you as I have no other health issues apart from no thyroid I thought that it would be fairly easy to become well but it is not. The tirosint is good for people who have gut issues due to low fillers but it would not help me.
in reply to
Yes Tirosint helps but I know it’s not a cure all for everyone! In fact I’m going to my endo more about tirosint. Thank you!
Like others have said, yes, it's possible to lead a normal life with hypoT but you may have to work hard to get there. Few doctors know about alternative treatment methods such as T3 or NDT, and most doctors seem to think that a dose of T4 that keeps your TSH "anywhere in range" is enough. If you don't feel well, then that is not because of your thyroid condition. I have seen many doctors like that over the years.
In my own experience, living with low metabolism for years before being diagnosed can also mess you up pretty badly. I have a colleague who had her thyroid gland removed due to cancer and she was put on T4 literally the next day, without having time to go hypo. She has never had the problems I did. She has done well on T4 only drugs and never put on any weight. I have Hashimoto's and was hypo for years before being diagnosed, and for even longer before switched to NDT. T4 only did nothing for me but make me even more hypothyroid. It took me several years to correct other hormonal deficiencies - cortisol, estrogen, progesterone - so just going on NDT was not enough for me. For a long time, I believed it to be a miracle drug which would cure me in no time, but I soon discovered that you may need to balance other hormones as well before your thyroid hormones will start to work properly. And for that you need a knowledgeable doctor, and those are few and far between.
So it can be quite a struggle to get the right treatment (which may very well be different from what works for someone else) and balance your whole endocrine system.
I think one problem is that mainstream doctors know appallingly little about thyroid disease and treatment. They just assume 75-100 mcg of T4 daily is enough to make you euthyroid, and all remaning symptoms are dismissed as unrelated to your thyroid condition.
in reply to
ASanders69 Thank you! This is some good info and yes most doctors treat the same way!
san_ray70 in reply to
I did not realise brain fog was part of thyroid condition, I am seeing my doctor today , I think I will mention this. I thought as I am 70 I thought it was age related.
I agree every one has is different and what works for someone that it might not work for the next person. I am glad to at least have hope! Thank you!
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