Thyroid Diagnosis

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Hello folks - im new to this forum, so if i mess up how it's done, forgive me. Anyhow - for the past 2 years i've been poorly. For the last 6 months illness has progressively become worse. Having been tooing and frowing the doctors, yestarday i had the diagnosis of Auto immune attacked thryroid. I know nothing much about the illness. I've been given 50ml dosage of Levothyroxine to take daily. The question i have is this. For the best part of the last 6 months i have been unable to walk properly or without pain 80% (there abouts) of the time. I spend most of my time being asleep. Im in cronic pain with my joints (been tested for various arthritis, but nothing showing in tests) Is there any possibility the the pain and exhaustion are connected with the Thyroid issue? My doc said i should start to feel a little better soon, but seems perplexed by my exhaustion and chronic pain. I'd appreciate any views or experiences anyone has had or if you views are that my symptons do not fit with a Thyroid problem, please do say. Many thanks. Helen

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  • Posted

    Welcome Helen.  I have Hashimoto's also with hypothyroidism.  Hashimoto's causes hypothyroidism in some people after your body has destroyed some of your thyroid.  Hypothyroidism is when your TSH (thyroid stimlulating hormone) is on the high side.  Hyperthyroidism is when your THS is on the low side.   It is a little confusing being they are opposite of each other.  High-hypo, low-hyper.  The symptoms of hypothyroidism is fautigue, hair loss, brain fog, weight gain, constipation, feeling cold all the time, dry skin, aches and pains and possible slow heart rate, among others.  Hyperthyroidism symptoms are anxiety, sweating, heat intolerance, aches, pains, fast heart rate, papiltations, diarreha, claminess, and weight loss, among others.  With Hashimoto's it is common to go from being hypo to hyper for a while until most of your thyroid is destroyed, at which that point, most people stay hypo for the rest of their lives.   You are Hypo right now and that is why your doctor gave you levo to help lower your TSH.  It can take around 4 to 6 weeks for the levo to build up in your system before you feel any real changes.  Yes...  aches, pains, joint pains are all common with hypothyroidism for many around here...  I myself have pains in my upper back, neck, lower back, hips, outer thighs and the heels of my feet.  The levo should eventually help with all of that IF there is nothing else going on with you.   It is very common for people with hypothyoidism to be low on vitamins and minerals also.  Some that you should have checked are

    Vit D, Vit B12, iron, magnesium, zinc, selenium.  Can't remember if there are others.  Being low on certain vitamins and minerals can cause many symptoms within itself.  I'm sure others will be along shortly to give more advice..  Good luck Helen!

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    • Posted

      Aww thank you for this reply, thank goodness, i felt as tho i was going mad having these symtoms but no obvious reason why. All those  pains you mention is what i have been having. I don't feel quite as crazy now :-)

       

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  • Posted

    Hi Helen,

    Yes the symptoms you are suffering with could definitely be caused by underactive thyroid.

    I suffer with both too.

    A piece of advice for when your doctors are testing your levels with medication, they will usually test (in the UK) for Tsh (thryoid stimulating hormone) and T4 levels. Levothyroxine is a T4 medication and is meant to convert a lot of this into T3 hormone. However, not everyone does automatically and may need a combination of T4 and t3 meds. Your t4 and tsh results may come back "normal" and won't give an indication of whether you need more t3, so request that they test your "free T3" levels as well.

    Lots of people on this forum suffered for a long time being on levothyroxine and still having symptoms and I wish someone had told me when I was diagnosed (I found out this info 8 years later).

    Some people do fine on levothyroxine alone, but worth checking t3 levels if you are still feeling lousy x

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    • Posted

      I have to go for blood test at the begining of April. TFT is being tested, TSH has been crossed out on the bloods form. I didn't realise people sufferred for years without being tested - that's madness. I thought 2 years was a long time.  The doctor gave me the impression that once i have the levo everything will go back to normal (whatever normal is) Thanks for the advice, i appreciate it.
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    • Posted

      Hi Helen tft stands for thryoid function tests (Tsh and T4). Yes it's sad people can go for so long. Levothyroxine is the cheapest medication to treat this and some doctors often wont prescribe anything else if this doesn't work for you. I was unfortunately diagnosed with the condition as I have similar symptoms to you and my Tsh was slightly higher than normal, but my antibodies were normal and I don't have hashimotos, so now they think I never needed medication in the first place, so trying to wean myself off levothyroxine to see what happens.

      It is a condition that is really poorly understood considering how common it is.

      The name of the T3 medication that the Nhs can prescribe is Liothyonine, just in case you ever get to that point (fingers crossed that levothyroxine will work for you though)

      It's been a real battle for me with the nhs as they seemed to be very concerned about cost rather than the best course of treatment for me. I ended up seeing a private endocrinologist who suggested I have been massively over-medicated for years.

      This forum is great for information and I wish I found it sooner. Hopefully with the right help you will get the right balance of medication sooner rather than later x

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    • Posted

      If you do find you are still having issues after starting treatment, I would really recommend asking for a referral to an endocrinologist who specialises in thryoid issues- it's best to get an expert to look at you and run the tests the other lady described before it gets to the stage where you are really suffering x
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    • Posted

      What is Hashimotos? Doc told me my was cuased by antibodies attacking he thyroid - is that the same as you?
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    • Posted

      Hashimotos disease is the main cause of underactive thryoid in Caucasian women (about 90% of women with underactive thryoid have this cause).

      When they test your thyroid antibodies they are testing for hashimotos disease - double check with your GP, but it sounds like that is your diagnosis. It's a condition where the body attacks it's own thryoid.

      It's not the case with me as my antibodies were within normal range. There aren't many other causes, which is why they are debating whether I had it in the first place. The main other cause is iodine deficiency, but this is generally only common in developing countries (not in the UK or US).

      There are lots of books on hashimotos disease - probably listed on the thyroid UK website if you are interested x

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  • Posted

    I wish one pill of levothyroxine would fix everything.  Yes... for some people it does.  But not only that... it can take years to even get your levels right with levothyroxine for some.  I have found out I have had Hashi's with hypothyroidism over 3 years ago and have yet not been able to get my levels right.  For example.. after a dose increase a month ago because my TSH was high, I just had blood work to see if the increase worked and here my TSH actually went even higher instead of lower!  So he inceased my levo even more.  In the over 3 years I have had this...  my levels have NEVER been in range yet.  It gets frustrating.  Hang in there.  Hopefully you will have a good doctor who will work with you and dose you based on your symptoms.  Aslo one that will check your FT3.  Not all doctors will.  Mine won't.  I have never had them checked.  I think I am going to switch doctors or pay for private blood work off the internet. 
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    • Posted

      I too had a problem stabilising my dose. I eventually worked out that, for me, when I changed dose, it was as though there was a resonance effect, where my symptoms and blood tests would oscillate between high then low, with each of the high and low points gradually reducing until they flat-lined - without me changing my dose. Thus if I had a blood test at the wrong point in this cycle it would give misleading results. For me this cycle from beginning to end lasted about 3 months. So what I learnt was to change dose by a quarter of a 25mcg tablet every 2-3 days and not to have a blood rest for at least 8 weeks. Obviously this is only feasible if one is somewhere near the correct dose. I also learnt to monitor my levels by using my resting pulse rate (I took this after I had been lying down for an hour). If it was less than 60 beats per minute, I was under-medicated and needed to increase my dose. Above 70 and I was over-medicated and needed to reduce my dose. 65-70 was a sign to monitor it closely to see which way it was heading, then act accordingly. If I had a blood test 4 weeks after increasing my dose, it would always show my dose as being too high. Maybe this would work for you??

      I have since found out that I don't convert from T4 to T3 very well (my T4 level was top of the range but my T3 level was below middle of the range). One would expect both the T4 and T3 level to be at the same point in their respective ranges.

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    • Posted

      Thank you for the advice Barbara!   That makes sense to me.  I will definitely check my resting heart rate daily and see if that will help with my dosing.  I'm willing to try anything at this point.  My endo wants my TSH around 1, but I can't even get it bearly below 3...lol.  Thanks Barbara!
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    • Posted

      You're welcome. I hope it helps you get stable and feel better. The simplest way I can think of to describe all this, is that it feels like there is a 2-3 month time lag between a change in dose and the blood test accurately reflecting that dose.

      Are you aware that if you click on the person icon next to a respondees name you can see a list of everything they have written?

      I'll pm you a site where you can get info on self monitoring and a checklist to see if you are over-medicating.

      One more thing, I needed 25mcg more thyroxine between the months of October to March inclusive (UK autumn and winter).

      Once you get your dose stable and the blood tests in range for 5-6 months, monitor to see if your symptoms match the blood tests. If you are still getting hypothyroid symptoms when your blood test is in range for this length of time this is is an indication you are not converting thyroxine very well.

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  • Posted

    Sorry.. don't mean to scare you.  Like what was said... it does work for some people with levo.  I pray you are one of them and goes well.
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    • Posted

      Oh no - you havent scared me at all - no worries. It's good to get real feedback from people who have the experience. I think ill do some reading up as clearly it isn't as straight forward as i first thourght.
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    • Posted

      Helen, carmels reply started with:

      'One possibility is that your adrenal glands are not functioning properly, maybe exhausted. This can often cause a thyroid problem and it can cause pain etc.'

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