Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Chi chi on May 19, 2017, 02:06:27 PM
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In my ongoing struggle to find out what all my symptoms mean I joined a thyroid forum, posted my latest results along with my symptoms and a couple of people have suggested that I could have central hypothyroidism? It's where there's a problem with the pituitary gland rather than the thyroid.
Just wondered if anyone here has this?
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Hi sorry I can't answer but I'm having private thyroid blood test next week as I'm sick of the basic nhs one saying normal. All my symptoms are either perimenopause or thyroid (;family history of it) but my readings of below range t4 normal tsh points to pituary gland thyroid issue like you. I'm hoping my tests next week that do the full 8 thyroid tests will confirm that. I hope someone on here can help you can I ask why you think it's thyroid not meno and what are your symptoms thanks
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From what I remember/have read a normal or slightly high tsh reading with low free T4 would point to central hypo rather than primary hypo. i can't remember your readings - does this apply to your readings?
Central hypo is usually due to rare diseases ( brain) or secondary to radiation treatment for brain tumours.
Can you go back to your GP with your findings/worries and ask how you can get tested for this - again I would imagine neuro or endo would be the speciality needed.
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Hi, I'm the same! So fed up of being told "normal" even when things are out of range! I mean what's the bloody point of the ranges in the first place??
I've been on HRT for approx 3years now, initially things improved as my low levels increased but then it seemed to plateau and things just went back to pre HRT.
My symptoms are as long as my arm but are all ignored by my GP, I had to go private to get my sex hormones tested and treated as my GP said I was too young to be having "those" kinds of problems!
Tiredness, Anxiety, depression, lethargy, always feeling cold, always needing to empty bladder (day and night) burning feet/restless legs, no libido, bloating like I'm pregnant, swollen neck, dizziness, foggyness, feeling of wetness on legs when they're bone dry, daily headaches, always thirsty, sweet cravings, no motivation or excitement, puffy fingers, eyes, feet the list goes on!
Which tests are you having?
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From what I remember/have read a normal or slightly high tsh reading with low free T4 would point to central hypo rather than primary hypo. i can't remember your readings - does this apply to your readings?
Central hypo is usually due to rare diseases ( brain) or secondary to radiation treatment for brain tumours.
Can you go back to your GP with your findings/worries and ask how you can get tested for this - again I would imagine neuro or endo would be the speciality needed.
Yes my results are
TSH 1.86. Range 0.27-4.2
Free T4. 12.2. Range 12-22
T4. 89. Range 59-154
Free T3 4.2. Range 3.1-6.8
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free T4 level 14.7 pmol/L [9 - 23]
TSH level 2.63 miu/L [0.25 - 5]
I always feel cold and lethargic, with permanent constipation, but mine are always bang in the middle :(
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I have all your symptoms too chi chi I'm eliminating thyroid first or not then hrt..my worst is the insomnia I cannot get to sleep til 3 or 4 am EVERY NIGHT it'll be 4 years in August and no one can find a cause. I've narrowed the symptoms down to hypo or peri. The blood test is through blue horizon it's their thyroid 10 test they test all thyroid and vit d and ferritin biit it'll be another week til I hear back then have to go to my own useless gp. I have a lump in my neck too so I'm having to have a biopsy so right now I can't start hrt or anything til they test for lymphoma. If I got more than 4 hours sleep a night I'm sure half my symptoms would go but if it's thyroid I'm the same as you it's pituary problem. Their scale lowest range was 9 and I had t4 of 6.8 they said that's normal. How!@!@
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Looking through my notes, heatbeat bpm is 78, with a range of 0-80 ;D
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From what I remember/have read a normal or slightly high tsh reading with low free T4 would point to central hypo rather than primary hypo. i can't remember your readings - does this apply to your readings?
Central hypo is usually due to rare diseases ( brain) or secondary to radiation treatment for brain tumours.
Can you go back to your GP with your findings/worries and ask how you can get tested for this - again I would imagine neuro or endo would be the speciality needed.
Yes my results are
TSH 1.86. Range 0.27-4.2
Free T4. 12.2. Range 12-22
T4. 89. Range 59-154
Free T3 4.2. Range 3.1-6.8
Your tsh is so normal its very confusing! Would expect it to be higher than that for it to be central hypo but your free t4 is def low. have you had it tested again since this test as there are so many things that can affect your thyroid readings from a minor infection like a cold to stress!! Possibly first thing to do is ask for a repeat of the test to see if your free t4 is still borderline and then if it is this is the time to discuss your worries about central hypo.
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Is there anything that affects a thyroid test - ie does it change from morning to evening, after a run, or sitting still in a waiting room for and hour? Or will it always come out the same?
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Ooh I forgot to list my constipation! When I do go it always feels incomplete like there's more there ???
Haven't had my levels checked since my last time, they were done end of April but I'm getting a 24hr urine test as I'm told this will show what my thyroid is doing over a 24 hr period rather than a snapshot of when bloods are taken.
I don't have a lump as such just like a band of puffiness around my neck, funny because one of the Drs at my practise ALWAYS asked me to swallow whenever I saw her (she's left now) while she watched, nothing was ever said about it though? A private GP recently felt it and said it doesn't feel like the thyroid itself is swollen??
Peroxideblader that is ridiculous! Why don't they take notice of the ranges is beyond me!
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I've checked my results from over a year ago my t4 was 8.2 so I'm well under this scale but my tsh was 1.4 but because my tsh wasn't raised and was in the normal range they said i was fine. I asked about a month ago for a re test but they said as I was normal in their eyes last time there's no need hence why I've arranged my own full private one. What do you think of my results in your opinion?
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I've checked my results from over a year ago my t4 was 8.2 so I'm well under this scale but my tsh was 1.4 but because my tsh wasn't raised and was in the normal range they said i was fine. I asked about a month ago for a re test but they said as I was normal in their eyes last time there's no need hence why I've arranged my own full private one. What do you think of my results in your opinion?
I'm sorry I really couldn't tell you, I'm as new to all this as you :-\
I could post a link to the thyroid forum if I'm allowed?? There's loads of info and all seem really nice and helpful :)
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Not menopause related but I'm having the same problem with my daughter's doctors. She is being seen for gastro problems chronic heartburn/ indigestion. They tested her thyroid as I told them she had erractic periods her first TSH was just out of the normal range at 4.89 with normal t4 at her last appointment different doctor I asked if he could redo them he was reluctant but agreed in the end and her TSH had gone up to 6.7 still normal t4, they still don't seem bothered about it. She's going to a different hospital to see a gastro specialist so I shall be pushing for more tests. But hate having to fight to get the answers
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thyroid measurements can alter within a few hours so when you have your tewst it really is just a snapshot of that moment in time, bit like hormone tests! Loads of things affect the result but the most common are any infections/viruses and stress.
In an ideal world just like insulin dependant diabetics, thyroid patients would have their own blood moniter and could do a test every day and adjust their dosage accordingly just like diabetics do. a blood moniter was invented in america but it is very expensive and not as far as I know available in uk.
I once had thyroid tests two days running due to my gp doing one and then the next day being admitted to A&E and I had totally different results :o
So 24 hrs made a massive difference to my results although they were still within the normal range but it was a good example of how much it can fluctuate.
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Not sure if this is relevant but there is a Pituitary Foundation. There is a website with a dedicated nurse who I think will answer questions. I think there is a tiny joining fee.
My sister had a pituitary tumour when she was in her mid 20s. She is now nearly 70. She has lived her life on various meds. Cortisone being the life saver along with thyroid meds.
I know she is a member of this foundation and finds it very helpful.
Mrs Brown.
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So me paying for a private full thyroid blood test is pretty useless then as it just tests that day?? If stress affects the results are doomed as I'm permanently stressed with lack of sleep and feeling ill all the time. Bummer...I want them to find something wrong so I can then start to feel better but there again I don't want them to as it's serious is thyroid getting meds right. There again if it's perimenopause that is alot of trial and error with hrt...I'm coming back as a man being a woman is rubbish 😏
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My endo explained that the thyroid naturally adjusts its output according to the body's demands and activity, that is why it fluctuates. However mine no longer produces any of its own natural thyroxine, the only T I get is the synthetic that I take, which I adjust myself if my activity levels increase for any reason, such as my daughter's wedding!. As a result, now I am stable, my 6 monthly blood tests are pretty much the same every time. I have TSH, FT4 and FT3 done pre dose, (thyroxine and liothyronine) and 2 hours post dose to see the correlation between and uptake of the meds.
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As babyjane says the body adjusts all the time. If you have serious thyroid issues then every test will be abnormal. The difficulty is with people who are borderline abnormal and as previously explained what is normal for one person may be abnormal for another which is why Drs should not go on blood test results alone but take into account symptoms.
People on thyroxine should be tested every 6 months and not as some surgeries do every year or even two years >:( 6 months is the max there should be between repeat tests and any dosage change then the retest should be in 8-12 weeks. Like babyjane says once stablisied on thyroxine then often there is very little variation in blood test results often for many years. Hormonal upheaval or extreme stress and illness will throw the results and dosages often need adjusting but its simple to do and moniter.
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:thankyou:
my endo is very good. At my 6 monthly review he gives me 2 blood test forms, one for before the next visit and a spare one in case things go awry and I want a retest sooner. He looks after me so well, I owe him my life :)
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Well I dread to think how useless my gp will be if these tests show a problem they'll give me meds then wave goodbye no follow up knowing them. I'll have to grow a pair..strange thing is since peri I've changed and take no prisoners now I say what I think and don't stand for crap anymore in all areas of my life APART from doctors I turn into a nodding chimp and leave disasstified and peed off after getting nowhere so I need to start being more assertive
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Hi I've just got my thyroid test results back and my free t3 is way too low and my free t4 is just on the lower limit..I'm trying to get in to see my gp but I've just been searching for more info and it's not actually classed as hypothyroidism or pituary fault and cannot be helped only supplements or diet and thyroxine meds don't make a difference. I'm stuck now as I had to find out if all these nasty illnesses were peri or thyroid and now I'm still no further. I just know my doctor will either say no action to be taken or suggest the bog standard thyroid meds thinking it'll shut me up when I know it doesn't help. My tsh is normal ..anybody help??? ( says stress which produces high levels of cortisol can inhibit t4 and t3 but seeing as I'm ill all the time and get 3 hours sleep I'm not surprised I'm stressed it's catch 22 )
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Anybody have any advice if they think I have hypothyroidism before my doctors tomorrow as they will say everything is normal even if I'm off the scale about to die...
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If your t3 is too low and your free t4 is bordeline low then your GP should not ignore this! As you are not conforming to any standard diagnosis they should refer you to endocrinologist although the wait on nhs can be very long.
Can you afford to pay for an initial appt with endo privately? Then you could at least discuss it with the most qualified person. Your Gp can refer you privately even if they won't do it on nhs.
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I went to the doctors today they'd spoken to consultant at endo and they said although my free t4 is low, because my tsh is normal not to take further action ..and said free t3 is irrelevant and is only testEd when tsh is high and hyperthyroidism is a possibility..what a surprise...back to square one aarrgghhhhhhh