Under active thyroid

I am a 40 year old male. I was told I had an under active thyroid. That was 3 years ago. I have an out door physical job. I had no idea for about 4 years I suffered feeling the cold all the time, I put on weight but I did not notice this to be honest. I lost the hair on my arms. It got worse with time, then I all ways seemed to be tired. I put it down to the job. I always seemed to have a cold. My eyes started to get puffy, I was falling asleep a lot. I ended up in hospital never been to hospital before. It was very weird time for me. I don't even remember what happened had no real memory off it to this day. The hospital sectioned me for 4 weeks. (Mental disorder). I was told that I was banging on my walls at home.

I felt stupid that this had happened to me. Anyway I was put on 150ml levothyroxine. I came out of the hospital every one was surprised how much weight I had lost. I have not had a cold since I put on the levothyroxine,. People could not believe the change in me. Do not feel the cold any more, very alert don't get spaced out anymore. My medication has just been put down to 125ml first time since I started the medication. I felt fine but the doctor said to do so.

19 Replies

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  • It's great that you have been feeling so well since getting treatment.

    If you start to not feel so well on the lower dose, make sure you do get your doctor to increase back up to 150mcg. Doctors often go just by the TSH reading, which should not be used on it's own especially when you are on thyroid replacement. TSH is often artificially low when you are taking thyroxine. If your doctor refuses to increase your dose back up, ask him to test T4 as well and if that is in range he should have no reason not to increase your dose back to what it was.

    It is a very good idea to get the actual results of your blood tests each time, along with the reference ranges of what is considered "normal". Often there is room for manoeuvre with these things.

    Take care

    Carolyn x

  • I thoroughly agree with what CarolynB says, don't be fobbed off with a lower dose of thyroxine if it starts to bring symptoms back....Val

  • I'm not very good at working out if I feel un well I just get on with the day. When I have a blood test I do not think I have seen the same doctor they are always different. I do not have one doctor like when I was younger. I don't understand a lot of the readings. About a year ago I had blood test results the doctor said I was under, and then I saw another doctor and he said my levels were great. They are meant to be doctors they seem to be hit an miss. I suppose I will get better at understanding it in time

  • Thank you for sharing, take care

  • I had a simillar experience I battled for years telling doctor didn t feel well but so many little things that didn t seem worth mentioning but put together was a general feeling of being unwell. I hurt my shoulder and chest when opening a safe at work and was admitted to hospital they said had just pulled muscle but should go to doctors because my thyroid readiing was 57 was put on thyroxine and have completely new life that was about 20 years ago now. I take 100 per day and have had no problems ever since.

  • I agree totally with the first two comments. Why mess about with the dosae if you are feeling well? This is the main problem most hypothyroid dufferers have. They are obsessed with the TSH and they have got it totally wrong. If you start to feel less well, go straight back and brook no arguments. It would be wise to be fore-armed with the book 'Understanding Thyroid disorders' by Dr Anthony Toft, and particularly page 88 which lays down the figures which the doctor should be aiming at for the TSH. You can get it here: familydoctor.co.uk/node/192...

  • The link may be fine but my spelling way out. Some people might think we are dufferers but we are sufferers!

  • Lol! I do that when I'm on my phone. I have "fat-finger" syndrome when I type on my phone. Some of the mistakes I make! That and autocorrect have almost got me into trouble ;)

  • Me too. I got to my 40s with barely a day's illness, then was ill on and off for about 5 years, and my previously happy family life was under great strain. I was advised each time I went to the doctor that I had a virus, once when I felt I was near death on holiday, that I had had sunstroke, and once that I could 'cheer myself up by reading women's magazines', and that I wasn't 'past it yet'!

    A different GP had just come back from a tribunal when he saw me, where a patient has been misdiagnosed with depression for a thyroid deficiency. Over 6 years he had lost his business and his marriage broke up.

    I have been well for about 15 years since then, on daily thyroxine, though have a few days every now and then when I feel very low.

    I am so glad Max, that at last you have the correct diagnosis, but if only GPs were more alert to the symptoms. I do see how it could be seen as depression, because of course sufferers are depressed both physically and emotionally, if they do not have the right treatment.

    I only found this website last week.

  • My GP dropped my dose by 25mg because of a government advise note. the difference was horrendous. I had a blood test and then a call from the surgery advising me they were to drop the dose again due to those results. I met with my GP and told her that the quality of my life was reduced and that I would rather have the palpitations or risk of osteoporosis (no evidence of either) My GP was fantastic and as 12.5mg not available we agreed that I take 125mg and 100mg on alternate days. The difference on the 100mg days is very marked but is better than regular 100mg. If you feel worse it is worth suggesting the alternate day approach it is at least a half way point. It does appear you have a good relationship with your GP

  • Good to know that poor health is behind you Max123. Thanks for posting. Have you watched Scottish Parliament Petition on here.

    My lovely Doctor looks in his thirties and states that hypothyroidism mainly affects women. Given that it is accepted that young men rarely consult a Doctor and with my Doctors conviction, the GP's are probably not looking for it anyway.

    I have seen signs in my son and he will not consult a Doctor or discuss with me. He has witnessed a lot of mis diagnosis in his father and me. It is possible that is the reason or he just hopes that if he ignores the symptoms they will go away.

    So good to know you were diagnosed treated and getting your life back. Keep it up and hope you keep record of your test results for your own understanding of how you are.

    Thanks. wyn

  • A few years ago I felt all the usual symptoms of hypothyroidism. When I asked for my blood to be checked the results I was told by my GP I was borderline, so she decided to do nothing but she was concerns about the results of the liver function test that was done at the same time. I was sent for various tests and scans. As the problem wasn't to serious I elected NOT to have a biopsy done because of the potential bleeding.

    I also had bad pain in my left heel which was diagnosed as plantar fasciitis , very, very painful. I suffered with this and generally feeling very unwell for about six or seven years after being told I was borderline for hypothyroidism. Eventually I went back to my surgery and saw another doctor, he arranged more blood tests, a few days later he sent in the post a prescription for 50 micro grams of levothyroxine . Which was later increased to 75. After a few weeks I started to feel so much better and the pain in my feet started to go. And after a little longer my liver function tests also improved , now the results are normal.

    I've now been on 75 micro grams of levothyroxine for about seven years and some of the symptoms have returned, this time I was told my cholesterol levels had increased and my BP was a little high. I started to feel cold, tired, my feet started to hurt again, constantly itching ears etc. So for the past two years I've asked for the medication to be increased. My own GP refused but I did eventually manage to talk one of the practise doctors to increase my dose to 100 micrograms, I can't believe how much better I feel, no longer feel unusually cold, sleep well and the balls of my feet no longer feel as though they are on fire.

    If symptoms return I will never again just sit back and believe the doctors know best. Half the symptoms of hypothyroidism most GPs have never heard of and when you go to them armed with info you've pulled of the Internet they so often just dismiss you as a nut case.

  • You sound just like I did, when I was diagnosed with ME/CFS 5 years later I was diagnosed with under active thyroid. It,s quite awful how it affects your Mental Health. In Oct last year my meds where changed from 125mcg Levo to 100mcg, and I,ve felt awful ever since. However I have my first appointment with an Endo in Feb (its been brought forward from March), so I will wait to see what his thoughts are, but im sure I need the Levo increasing. Glad your feeling much better, and remember if you have just been diagnosed to get your bloods done every six months, just to check the dosage is correct. Take care, Kath

  • I have been feeling terrible for over a year now my thyroxine was reduced from 100mcg to 75 my latest blood test shows my tsh level at 4.5 which they say is normal, is that normal I am not sure. After insisting that I need something to be done my doctor is send me to see an Endo. Does anyone know a good Endo in the Plymouth, Devon Area

    Ros

  • Hi

    If you can get a copy of your latest thyroid blood test results complete with ranges (figures in brackets) post again and someone will reply.

    We should have a TSH 1 or below if on meds. We actually are having to educate GP's. This is an excerpt from ex President of the British Thyroid Association and if you need a copy of it email Louise.Warville@Thyroiduk.org and discuss it with your GP. My TSH is 0.01.

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

    **

    See my comment below about adjusting meds.

  • The doctor was not wise. You were not complaining and you felt well. Amazing as you are on levothyroxine only. It doesn't suit a lot of people. This is an excerpt for not adjusting doses and cursor down to question dated January 25, 2002

    Dr Lowe: Your observations don’t suggest to me that your pituitary gland isn’t functioning properly. In fact, your observations are consistent with what science tells us about a patient's T4 dose, her TSH level, and her metabolic health or lack of it. If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

    The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.)

    web.archive.org/web/2010122...

  • Hi again,

    I did put my last test results on and they are:-

    (442W) Serum 0.70miu/L (0.35

    TSH level -

    4.5

    NORMAL RANGE.

    This is exactly how it is written so I dont know if they have put a dash and not the result and that the 4.5 is that hospitals normal range ???

    I was going to see Dr Peatfield this Monday but have cancelled since my gp says he will send me to a Endo. and thought it would be better to go through the NHS first as I would have to travel from Devon to Crawley. Which is an awfully long way when you are feeling unwell and is very expensive when you are on a pension.

    I am 67 and have been on Levothyroxine for about 20 years in that time I have had two minor heart attacks, high cholesteral, depressed and in the last two years have been so tired it is really affecting my life so much that I feel like I am sleeping so long I can get the things done that I would like to do.

    Hope someone can help interpretate these test results and have any ideas as to what food is a good source for a healthy thyroid.

    Thanks so much

    Amelia Rose

  • good luck I do hope it all stays possitive.

  • I take 100mcg levothyroxine, my symptoms are feeling the cold, mentally slow, short-term memory loss, I used to feel dead from the neck down, never feel my heart beating and never get an adrenalin rush or become excited just mildly look forward to some things on the odd occasion. Now feel dead from he scalp down which is not good at 55 and could sleep for England.. Im happy the meds worked for you perhaps I should change Doctors as he goes by the the blood test and not the symptoms.

    Racehorse turned slug Roni

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