Hi all, I am new to this, but I am getting so much different 'advice' from Dr's and Internet. I thought I would reach out to the people who know best.
I am newly diagnosed with Hypothyroidism. Approx 5-6 weeks ago. Currently on 50mg of Levothyroxine. Follow up blood test due next week.
It's all completely new to me, no one in my family has ever suffered from thyroid problems.
I have a couple of other medical conditions too. I am type 2 diabetic and suffered from anxiety and depression for many years.
I am also iron deficient, folate deficient and B12 is iffy too.
The diagnosis has knocked me for 6. I woke up one day and felt truly awful. Felt like I was dying from the inside out ( I know that is dramatic, but I didn't realise how many symptoms I had until my GP told me)
I have being doing research and found that information is so conflicting.
I have been off sick for 6 weeks as I still feel poorly. How long did it take you to start feeling 'normal' again?
Where I work I do rotas, allocate resources, book meetings. I am still struggling to even think straight let alone plan someone's workload.
Not sure my work colleagues realise how exhausted and how poorly it makes you feel.
Also exercise wise/ activity wise is it best to push yourself to do more? Or take it in your stride and not over do things?
Again had conflicting information.
Also any foods that will give a natural boost?
Thank you in advance
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Lady-lala
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It would be good if doctors had the guts/knowledge to tell us that very often with thyroid problems we ‘feel worse before we feel better’! I think it must be downright cowardice on their part. Plus they do not seem to have a clue of the reality of coming to terms with this illness. Right now you probably want to get better asap. We all do but for some this can be a very muddled period. When I was finally diagnosed I had already given up work so I did not have that to worry about, as well as everything else. I chose to give up/felt forced to give up work because I knew I was completely unreliable. It was very distressing because basically my doctors were telling me there was nothing wrong. Doctors, work colleagues, family, friends etc no-one understands like the people on the forum. It’s the weirdest illness other than outright mental illness (I think) to get a handle on. Try to distract yourself for a bit but definitely NOT heavy duty exercise, you are not up to it, no matter how much of a battler you might be ‘normally’! I know this to be true as I am well aware of the importance of exercise but I did battle on to my detriment. Type 2 diabetes is a well observed condition for people with hypothyroidism and as for anxiety …… well is it chicken or egg? I suffered with anxiety for about forty years and more before diagnosis. It’s only looking back (and feeling a bit better) that I know it was the hypothyroidism at the root of it.
So don’t be too hard on yourself. Ask questions on the forum. Observe yourself, especially at changes of dosage. For me these moments have been the most unsettling.
I was diagnosed in April of 2022 and just in the past few months I have felt like I'm fully alive again. I was misdiagnosed for 7 years though. I was hypothyroid in 2015, but it was ignored. Foods that make me feel like i've been thrown off of a mountain are gluten, dairy, sugar and high FODMAPS. If I eat any of those, I feel like I did before starting treatment.
I so sorry to hear you are going through this. Unfortunately the treatment is not quick and takes time. The good news is you have started treatment and are nearly ready for your next blood test. This will feed into as whether you need an increase. Ususly done in stages with a 6 week gap between blood tests. Make sure your blood test is first thing, don't take your thyroid tablets until after the test, fasting. . Make sure you ask for all copies of blood test results - it is your right. And post on here for advice with the results The usual thyroid ones are TSH Ft 4 and sometimes the labs will do Ft3.
Commonly low in Hypothyroidism are b12, vit D, folate and ferritin. You can help yourself by starting to boost these levels up so they are optimum not low in range. Low B12 should be checked by a blood test for PA called Intrinsic Factor blood test. And you should be checked for Coeliacs. Your GP can do these tests.
A good book to read is called Living with your Thyroid by Barry Durrant Peatfield. That is if you can read.... I remember struggling in the early days of my recovery.
Because Doctor now don't treat until your TSH goes over 10 Hypothyroidism isn't picked up early meaning people are far more poorly before they are diagnosed and this can mean a longer recovery time. Given how you feel now it's likely you will need an increase and maybe more. It all depends on how much your thyroid has failed/failing and as a consequence how far back up you have to recover. A thyroid specialist once told me it's akin to hibernation, your body has to be slowly woken up.
As far as exercise is concerned like any illness I would rest. Once you have recovered and your thyroid replacement is more optimum then you can look at exercise again. You don't run on a broken leg do you.....
Welcome to this group of fantastic people. I think some (I don't know numbers) thyroid patients do get better on the standard NHS Levothyroxine protocol where they will titrate you to find the right dose, so perhaps have skeptical trust of what they do for the next few months to see if it works for you. If it works for you then great, no need to add to your anxiety by going down rabbit holes.
But if your symptoms aren't resolved after NHS titration concludes then come back here (with blood results obtained following the recommended protocol) and start looking down those rabbit holes.
Also, you might have a honeymoon period of feeling better, so you might need to come back later anyway in a year or more.
Others have and will comment on numbers, protocols and difficulties here better than I can, but my one word would be: take control of your own health: most of us here have had to learn the very bitter lesson that the NHS and the white coated medics are not gods with the best knowledge and compassion.
Can you edit your post with all your blood test numbers and their ranges? That will be the fist thing you're asked. Thyroid panel, thyroid antibodies (high antibodies aka Hashimotos seems the most common cause), vitamins, etc. I wrote an easy to use website for formatting them nicely how the admins here like: thyroid.chingkerrs.online/
The NHS nowadays likes to work off blood result numbers rather than symptoms. So they will likely consider your case closed when your TSH, and free T4 are in range. That doesn't mean you well be fixed - YOUR SYMPTOM RESOLUTION is what matters.
As you say there is so much information on the internet that it opens up endless rabbit holes. This site is trustworthy IMO.
Welcome to the forum. You have just taken me back to nearly 13 years ago when I was first diagnosed with hypothyroidism.
I was overweight due to myxoedema, and was almost unable to take any strenuous exercise, and felt tired all the time. If I sat down for more than 5 minutes, I would fall asleep. I was unable to do my job properly and couldn't communicate because my tongue was so swollen that speech was difficult. I had low renal function, high cholesterol and high blood pressure.
My GP (who has retired now, but was on the ball regarding hypothyroidism) started me on 25 mcg a day, which did actually make me feel slightly better.
I can't promise you a rapid recovery, but recovery is possible. It took me about 2 years of gradually increased doses of levothyroxine with frequent monitoring to reach my current 175 mcg per day. I am not 100% symptom-free, but I can live a normal active and enjoyable life. My renal function and cholesterol are back to normal without any statins or other treatment, but by BP is still high. I also have a heart condition, but do not know if it is related to my hypothyroidism or not. It has been treated with a pacemaker and my life is good.
Hypothyroidism is a awful condition to have, but if you are one of the lucky ones, the treatment will give you a new lifestyle. Many of the people on this forum struggle to find balance in their thyroid treatment, but it is possible to live a normal and fulfilling life with this illness.
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
for most of us who started on 50mcg . a very typical pattern is feel nothing much for a week or so ,, the about a week ish of feeling quite a lot better and you think oh good, that's better ..but then about 3 weeks of feeling more or less as rubbish as when you started ,which is very disheartening ...... then first blood test, then a dose increase .. and repeat the same pattern , but it does get better each time ..... because each time you increase dose you tend to get a longer period of feeling ok ish , and the worse bit is not quite as 'worse' as it was previously.
i had about a week of 'ok' on 50mcg .. about a month of ok on 100mc and then stayed largely ok (or at least stable) once on 150mcg.
Can’t help thinking, is this explanation so difficult for GPs? To me this would be an excellent investment of their time - never mind the investment for the patient. In fact in itself, it practically amounts to negligence not to make time for this investment!
My suggestions are (I have been on 50mcg, then 2 month blood test to 62.5mcg and it will probably take 1 hear or more to get up to the full dosage. It takes time for your body to adapt and then react to the medication and in doing so it takes 2 steps forward and 1 step back, BUT over time you get to stable and mostly likely good situation.
I have a few bits of "advice".
Take your medicine everyday, walk for exercise as much as you can - the fresh air, the sun in the sky is good for the mind and body. Try to schedule a 10 minute lunch time walk, and evening walk or longer works if you body and schedule allow. You want to encourage fitness without overdoing anything. Other suggestions, put a YouTube music video on and just dance to it when no one is looking! Eat healthily and sensibly, but food you enjoy. You are trying to get the best you out of food and body movement. Try not to obsess about thyroid issues, it will take time so try to enjoy that time without worrying on it. Sound patronising but doing a hobby, following an interest, really getting into a fiction or biography book can take your mind off it by filling your time with something else.
It's okay to recognise that you are feeling well, that you can't do your job or things to the level you would like to, BUT hopefully you will also recognise those tiny steps to feeling better, which like a snowball get bigger and bigger as time passes now that you are being treated. Good luck.
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