MegaSack DRAW - This year's winner is user - rgwb
We will be in touch
As per title really. Would be interested to hear some positive tales.
Thank you. 🙂
My mum had hers taken out, drugs have worked OK for many decades.
my mum had the opposite, drugs only,no op needed and that was in about 1973, she's still going strong
Unfortunately thyroid issues can be absolutely hellish. It is very common for the cause of the problems to go undiagnosed and so untreated. It does get worse without proper treatment but my experience is it can take quite a lot to get through to some GP's what should be tested and even how the results can be read. Simply a dose of thyroxine is not enough and can make matters worse.
On a positive note, if you find the right "expert" you can get back to normal fairly painlessly, though there would be a good chance of needing some form of medication or dietary awareness to maintain the right balance.
I won't go into personal details on here, but feel free in emailing if you want. We do have lots of information and point you towards some good experts.
roper
Thanks for the replies.
Drugs aren't working, if indeed the diagnosis is correct. Currently cba to ride as I'm physically exhausted but, more worryingly, I feel as though I'm going around in a fog. 🙁
If the drugs aren't working you may not have the right diagnosis or the right drugs/diet. There are a few options, not always made clear to you, but rest assured it's not a permanent symptom even if the illness might be. You can get back to feeling a hell of a lot better or even 100% full health again.
Thanks roper. YGM.
My mum's is knackered as well (underactive) she pushed on through for a couple of years - eventually went to docs..
for 10 or so years has been fine on the drugs..
some issue or other we (rest of family) noticed something wrong - ie mum being sluggish - and that is not her.
Straight to the docs.. they worked out the issue, drugs not working - doubled the dose - mum is fine again.
am not a medical or pharmaceutical expert so cant comment on how good or bad for her doubling the thyroxine dose is but she drinks and smokes and mainly enjoys life, and feels far better with this new dose!
CG - that's interesting that you feel that way. Are you on quite a high dose? I eat a well balanced diet but after an hour of riding I can really flag where as pre-op I could go all day quite easily. Also if I don't eat regularly I have the same affects as being hypoglycaemic but my sugar levels are apparently OK. When you say you go around in a fog do you mean it's a bit like being spaced out/not quite yourself?
Oh and going on from Soulriders email I had my dose upped a year ago whihc brought me out of that stage for a few months but now right back into it.
Taff - I'm on the lowest dose of thyroxine. Have just had yet another blood test so the dosage will get reviewed by my GP, although I suspect he may possibly be labelling me as a mad menopausal woman.
My mental wellbeing is concerning me - am unable to think logically/rationally, making decisions is hard as is communicating with people.
am unable to think logically/rationally, making decisions is hard as is communicating with people.
I seem to know one or two people with thyroid problems then.
I'm going to raise the same issue at my next appointment. Apparently I stopped mid sentence the other day and didn't even realise it! Have you been told what the right T3 and T4 levels are as I have no idea and my doctor wasn't sure either but just said my TSH levels were right and that all other counts were about right.
Hope you get it sorted out quickly cinnamony!!
BigJohn - normally I would laugh at your comment but unfortunately my sense of humour has departed.
Taff - have you seen an endocronologist?
Edit: I really don't want to take drugs for the rest of my life!
No I haven't only my oncologist but it may be worth asking for anothers opinion on the side affect etc.
Our labs don't even measure/report a T4 or T3 if TSH is in normal range....
The only real controversy I'm aware of are whether or not to treat "sublinical hypothyroidism" ie raised TSH with normal T3/T4. There is more of a consensus to treat earlier to get TSH normal even if T4 normal.
It's fairly straightforward apart from that. You take the dose of levothyroxine that gives you a normal TSH.
People talking about surgery etc are referring to hypothyroidsim (overactive) which is more complicated and requires referral to hospital generally.
C_G don't think of it as taking drugs, it's replacing what your body isn't making enough of- that's why people on thyroxine get free prescriptions, its classed as replacement rather than therapy.
Most people with underactive thyroid just have an annual blood test and that's it. Nothing to worry about.
If you don't want to take tabs every day you can take a weeks worth all in one go at the weekend- it has the same effect.
that's what I normally find at every appointment is that they concentrate on ensuring that my TSH and thyroglobulin levels are correct but never mention the other levels.
CG - I presume you're on a repeat prescription for life with the levothyroxine? Have you tried experimenting with increasing doses [don't do it if you're within a 4-6weeks of a blood test? I've tried upping mine to see if there's a difference but haven't really had a conclusive affect to be able to tell the doctor that these levels would make me feel better but it might help you?
My wife suffers from hypothyroidism. The medication wasn't being properly absorbed for a while - so more tests found she had coeliac disease. (Also explained her low iron etc). 🙁
It appears that this is not that unusual - so it might be something else to ask the doc to check for?
Good news - a few months into a new diet and iron levels good, thyroid looking good 🙂
Email sent C-G 🙂
I've taken thyroxine for about 5 years now. I've been lucky in that I've had supportive doctors, who have been willing to try a dose increase on symptoms alone.
My argument was that I could be taking x amount of thyroxine and my TSH level was in range. But equally I could take x + 25 amount of thyroxine, my TSH level still be in range but lower and I could feel better but they wouldn't know that until I tried.
It's also worth knowing that iron levels and iron storage levels (ferritin) can influence how well thyroxine works. For me, if my ferritin level is below a certain level it doesn't matter how much thyroxine I take, symptoms remain. The similarity in symptoms means it's difficult to tell whether it's low iron or low thyroxine causing the problem.
How do you inprove your iron levels then? is it by a managed diet or supplements?
I developed hypothyroidism when I was 25 and went from a rather fit, very active young guy to a slow fat balding old looking guy over the space of 6 months. It took ages for the doctor to diagnose me - it was the last thing they expected in a 25 year old male with no medical history of thyroid problems. my medication wasn't right for ages but after upping my thyroxine 4 or 5 times I finally got back to normal. It took about 18 months for my skin, nails and hair to recover and a lot of hard work to get back to a decent level of fitness.
What one of my better GPs told me was that even if your tsh levels look ok then they should still treat the patients symptoms as ultimately you know your body best. Tell your GP how you feel and get him to up your thyroxin levels.
How do you inprove your iron levels then? is it by a managed diet or supplements?
For me with difficulty, I had the coeliac tests done after 3 months on 600mg of ferrous sulphate as I don't seem to absorb iron very well. It's easier if you're a bloke though, iron requirements aren't as high.
I might try an iron supplement then and see if that has any affect. Had a quick check on the internet and it doesn't seem to have an affect on thyroxine itself.
I was diagnosed by my doc about two years ago after a blood test, funny enough it was picked up by a kinesiologist that I was seeing for an unrelated illness, Anyway, I was prescribed levothyroxine, 100mg I recall, these gave me palpitations and an anxious feeling so stopped taking them, had another blood test, was prescribed a lower dose to help with the side effects, 25mg, this helped, then had another blood test, over the past few years my dose has been slowly increased, I'm now on 150mg and feel fine, I bike a lot and manage to keep my weight down, I eat normally and drink booze in moderation. All is good.
I was diagnosed with underactive about 6 months ago. Didn't have any symptoms it just came up as part of a routine health check. T3 and T4 levels were normal, it was TSH level that was a problem. Currently on 75mcg of thyroxine - can't say I feel any different but TSH is now back within normal range.
Free prescriptions for life too which I just don't understand.
Sometimes upping your dose of thyroxine can have detrimental effects.
If you don't have a fully working endocrine system you could end up with toxic levels of thyroxine, which can worsen your symptoms. Long term hypothyroidism can compromise your adrenal system which can prevent your body from processing thyroxine properly.
Iron supplements are often necessary but iron also affects the absorption of thyroxine into the body, so make sure you take your iron at the opposite time of the day to your thyroxine.
My Gran went undiagnosed for years and unfortunately put on weight as a result. My Mum has been on thiroxine for 5-10 years and is happy it's under control. On a positive note, it's a free (lifelong) prescription. Good luck
Where are you getting your info from roper? I've never heard anything about thyroxine damaging your adrenal system before - I'm not questioning you just looking for a bit of background reading 🙂
My Wife takes Thyroxine for hers, 10mg I think.. I think the dosing should be monitored more closely. A lot of GP's simply prescribe & forget. The dose needs adjusting for pregnancy, for example. I think my Wifes doubled. I'd also say seasonal changes can affect the necessary doseage. I'm not a doctor though. Do you normally get a bit low at this time of year Cinnamon Girl ? I always get a bit down at this time of year. Gearing up for a ride seams a chore, but once out I'm fine. Once we get closer to xmas I normally feel better.
I forgot the positive bit.
I don't lack energy any more than I did before the diagnosis, I bike 12 miles to work most days, and swim about 12km a week + whatever I do at the weekend. I still need lots of sleep, but that was always the case for me and is normal within my family.
I was lucky in that I was diagnosed fairly early and from what I understand the longer you've been underactive the longer it will take for you to feel normal again.
Forgot to mention about the free prescriptions for life.
I was also diagnosed with this when had a blood test for something else. Been on thyroxine about a year now, with the usual fun and games at the start trying to sort out the dosage. Whatever it is they count, mine was lower after having been on 100mg for 6 weeks than I was on 75. The solution? Bump it up again to 125. Been on that level since.
My sister who also has the same thing seems to suffer it a lot more than I do. I'm normally fine, but have the odd day or two here and there where I can tell I'm not quite right. And these days can swing every which way. It can make me struggle to do just about anything, when I feel slow and/or depressed. But equally I get days when I have too much energy. This has good points, when I can happily get up at 6am to go for a 10k run before cycling to work or pulling an all-nighter on the XBox as I just can't sleep. But it also has bad points. I get snappy and irritable, am constantly fiddling or strumming my fingers, and get what I can only describe as mischievous.
I look on it as a brilliant thing to blame just about everything on. If I can't be bothered, feel tired or put on some middle-age spread, I can blame the thyroid. If I lose weight, get snappy or have little mad moments, then it's the medication.
I'm finding that my TSH levels fluctuate and my medication just gets pushed up but I'm sure there are days to day foods that I eat that have an affect on how well it performs.
Hugo - I was hypothyroid for some time before being diagnosed, and apparently this can deplete the adrenal reserves. Depleted adrenals then hinder the absorption and processing of thyroxine so I ended up with a build up which gave me additional symptoms like shakes and palpitations. For now I´'m taking an adrenal supplement as well as thyroxine -
I have seen quite a few endocrinologists but have had most success
undergoing treatment from Dr Durrant-Peatfield.
Mrs Roper
cinnamon_girl - Member
Thanks for the replies.Drugs aren't working, if indeed the diagnosis is correct. Currently cba to ride as I'm physically exhausted but, more worryingly, I feel as though I'm going around in a fog.
Treatment by Thyroxine?
Very individual drug, repeated thyroid function tests can be required to get the dosage correct, if fatigue symptoms persisting then likely to be under dosed, but equally overdosage carried some nasty side-effects so increases in dosage should be carefully monitorted.
Very individual drug, repeated thyroid function tests can be required to get the dosage correct, if fatigue symptoms persisting then likely to be under dosed, but equally overdosage carried some nasty side-effects so increases in dosage should be carefully monitorted.
as a follow in from that heart palpitations are an indicator that your dosage may be too high. If you experience thuis frequently then seek urgent attention as it could cause long term damage.
I have the condition too, after diagnosis it took around 2 years to get the drug level correct, slowly increasing it until my hormone levels were right
Now on 200 micrograms daily & feel pretty good
At least I get all my prescriptions free now 🙂
Nothing specific to add, just hope you get well soon and get back on that bike!
Don't know if STW would consider me the right kind of specialist but I am an endocrinologist.
If GPs ask for a thyroid function test they tend to get the TSH (Thyroid Stimulating Hormone, produced by the Pituitary, does what it says on the tin) rather than the T3 and T4 levels which are the thyroid enzymes actually produced by the thyroid. The gland produces mostly T4, the work is mostly done by T3 and there is a mechanism in the blood which converts T4 to T3 as needed. That mechanism very occasionally doesn't work but I can only recall 3 people in 20 odd years where that was so. Therefore T4 or levothyroxine effectively acts as a floating reserve and for the most part that is what is used for replacement letting the body sort out the T3 level for itself.
T4/T3 levels basically control the tick over rate of all the body's systems so with a low level everything slows up and your body adapts to that level of hormone and activity. You tend to start on a low dose of replacement and work up every few weeks because to do otherwise is the medical equivalent of putting 5000 revs on the clock and dropping the clutch - might work, might be very expensive. By and large, most people get to the correct replacement dose of Thyroxine over 6 months or so and then need another 2-4 months for their bodies to adapt back to the level that the rest of us consider normal.
Body only cares that the level of T4 and T3 is right, doesn't care if you make it for yourself or get it as a tablet from Boots. Most people do feel better however if they are slightly over replaced ( T4 in the upper half of the normal range and TSH, which goes down as T4 goes up, in the bottom half of the normal range ) and once that is sorted symptoms tend to drift away. Dose needed can change over time as often thyroid is still producing some hormone for itself for quite a while.
The only real controversy I'm aware of are whether or not to treat "sublinical hypothyroidism" ie raised TSH with normal T3/T4. There is more of a consensus to treat earlier to get TSH normal even if T4 normal.
Shouldn't be controversial. Guidlines say treat anyone with TSH raised above upper limit of normal who also have positive anti thyroid antibodies and treat even in the absence of antibodies if the TSH is greater than 10.
It's fairly straightforward apart from that
Yes - but as stated above, overactive thyroids are a whole different ball game.
Email in profile CG if you have any more questions.
I've been on Thyroxine for about 5 years now. Dosage is stable at 100mg a day and I've never felt better. It does take a while to get the dosage right, but after that it's plain sailing.
It doesn't bother me having to take a single tablet every day for the rest of my life, as the downside is premature dementia!
Ratadog - probably the most useful bit on this subject I've read in the 6 years of using thyroxine. I've had a complete thyroidectomy so I'm reliant on my levothyroxine which is high enough to supress the TSH but I don't feel 'normal'. I'm on 200mg a day at the moment but that went up a few months ago from 175 mg when my TSH went above the safe level. That has been the only marker or guidance I've been given by my doctors so far but they don't feel I need to up my dosage as my TSH levels are supersed.which is their only concern. I suppose the only way to find out what level of levothryroxine you're comfortable with from this point is by trial and error or is there sone other way?
Apologise
C-G for high jacking your thread but found other peoples opinions valuable and until now didn't know of anyone else on thyroxine!!
I have been taking thyroxine for just over 10 years.
I take 100mg per day. I guess I was fortunate in that it didn't take very long at all to identfify/get to the right dose and in the past 10 years I have never had to increase or lower the dose.
Both my sister and aunt also take it, it took them longer to establish the right dose, but all sorted after a couple of months or so.
I suppose the only way to find out what level of levothryroxine you're comfortable with from this point is by trial and error or is there sone other way?
Mostly trial and error. As I say, I prefer to see both T4 level and TSH level but tend to tell GPs to aim for a TSH in the bottom half of the normal range ( and therefore slightly more thyroxine rather than slightly less ).
The problem with getting the dose right for any individual patient is that by the time you get diagnosed your blood levels have changed and we don't know what normal for you is, we only know what the normal range for the population is. You could therefore have a value within the normal range that was still on the low side compared to the level that your body is used to. Hence, aim for the top half of the T4 range - and therefore the bottom half of the TSH range - and most people will be right or slightly over replaced - which won't do them any harm.
Most people with straightforward underactive thyroid will be fine managed by their GP, for those that don't settle rapidly or have problems then you can always ask to consult your friendly local endocrinologist 🙂
good words there ratadog- i'm completely with you on S-C hypothyroidism. From what i have researched if t3 and t4 are normal, anti tpo screen -ve and tsh<10 there is no need to treat and label a TATT as hypothyroidism. It just medicalises their lethargy!!
I see so may patients who have had a single reading tsh of 5 or so and then get labelled as hypothyroid by my colleagues for an easy life.
And i imagine STW would consider a holistic practitioner or bowen therapist an appropriate specialist in this field!!
Thyroid disease is a doddle c/w tring to diagnose an acromegalic in a primary care setting!
Well, what can I say? Thank you so much to everyone who has contributed to this thread, certainly it has been an eye-opener reading the responses.
A particular 'thank you' to ratadog for explaining in reasonably easy to understand terms. 🙂
One thing mentioned that does interest me is iron levels. I've taken an iron liquid supplement for donkey's years and in fact am unable to manage without it.
But it's these variables that intrigue me. Is the NHS really able to cope with investigating permutations? With cutbacks, will patients instead receive a less thorough investigation with less frequent check-ups?
My day has not been good, started with the regular high heart rate even before I got out of bed. Feeling exhausted I forced myself to eat breakfast - currently have no appetite, eat like a sparrow and am putting on huge amounts of weight. Walk upstairs and reach the top breathless, as usual.
Actually everything is in slow-motion - my gait is laboured, body temperature fluctuating, my head can not deal with the decision-making process cos it's all fogged up.
Meanwhile, my 'new' build is abandoned cos I've lost my mojo to ride my 'Mojo'. 🙁
menopause?? Your not confusing a raised tsh with a raised fsh are you? 😛
Had the big op and take HRT, despite frantically trying out different supplements to avoid it!
Which reminds me - must buy some more liver!
I think there's some sort of interaction between female hormones and thyroxine. I remember reading that if you are on the pill you may need a higher dose because of the oestrogen. I guess ratadog might be able to provide more info.
Sorry to hear about this, and I'm a bit late joining this thread. I had complete thyroid failure when I was about 28, and the symptoms talked about here bring it all back. I remember being fat and yellow too ! But the good news is that I have now been on a stable dose of 175mg for 25 years, we got this dose right after about 3 months, and I now have a blood test every 6 months and nothing changes. Interested in the mentions of palpitations as I developed this in a mild form after about 5 years, but after extensive diagnosis we concluded it was not a serious issue. I get a spell every once in a while when exercising, and it passes in about a minute typically. I'm so used to it I know now before it's going to happen.
My experience over the long term is that my body goes through about a 6 week cycle, varying from feeling supercharged to run down.
But over the years this condition has not stopped me exercising at extreme levels - as a competitive rower, runner, traithlete and biker. It does work best when I compete when I'm on a metabolic high though 😆
Gosh, 25 years is a long time! But it does sound as though you are sorted and are still able to lead a very active life. 8)
Interesting to see the medics concentrate on TSH mainly. On the veterinary side we would usually look at T4 and TSH together as standard in dogs.
Have they checked for any other endocrinopathies C-G?
From what i have researched if t3 and t4 are normal, anti tpo screen -ve and tsh<10 there is no need to treat
Entirely agree - as do the national consensus guidelines.
Thyroid disease is a doddle c/w trying to diagnose an acromegalic in a primary care setting
Not easy in a secondary care setting either but my brain is frazzled enough trying to explain relatively straightforward thyroid disease without going off into the rareities.
On the veterinary side we would usually look at T4 and TSH together as standard in dogs.
More a question of what their lab will give them I suspect. As a specialist I want all the relevant info I can get and as stated that means both TSH and T4. Not sure how reliable TSH is as a stand alone in non human animals but it does fluctuate in humans in the presence of other non thyroid problems.
some sort of interaction between female hormones and thyroxine....I guess ratadog might be able to provide more info.
Oh Dear.
OK then, pay careful attention at the back and here we go.
T4 is not only the floating reserve for the production of T3 but a significant proportion of both of them ride round within the blood piggybacking on carrier proteins including albumin ( the main blood protein ) and TBG ( Thyroid Binding Globulin - again, it does what it says on the tin ). There is therefore a significant and measurable difference between the total amount of T4 and T3 in the blood and the level of free ( that is non protein bound ) T4 and T3 in the blood and it is only the latter free hormone that has any effect. Increased Oestrogen levels produced during pregnancy and also in some cases by the taking of HRT increase the level of the TBG and therefore patients in those circumstances who are taking thyroxine may need higher doses to maintain the same level of free hormone and therefore the same effect.
However, although it used to be a bit of a problem when we could only measure the Total hormone levels and TBG and then have a bit of a guess as to what the free level might be, thankfully we now can and do measure the free thyroid hormone levels ( i.e. the active bit only). This means that although the dose of Thyroxine needed to fill up the TBG and maintain the Free T4/T3 levels at the desired value may increase with the oestrogen, in practical terms the rule is still to give a dose of Thyroxine that maintains the Free T4 level in the upper half of the normal range. The fact that the dose required to do that might have been less if the patient wasn't pregnant or on HRT is neither here nor there.
IIRC increased testosterone makes the TBG level go down so same issue only opposite effect. Lets not go there either.
That's it for tonight. I am off for a swift shandy and a lie down.
Cheers Ratadog, great concise and useful info. TSH on it's own isn't that useful as as you say non-thyroidal illness can affect it and T4. We use free T4 etc too.
Just seems odd that the labs only offer TSH, hell we can measure T4 in house if need be!
I have, and have had for several years, 70-80% of the symptoms of hypo, but despite many Q's to doc it's never been suggested. I'd suggest i but I'm sure they'd assume I was a hyperchondriac google doctor!
The only reason I eventually got diagnosed as Hypothyroid was on the insistance of my mother-in-law who developed it after child birth. I had tests for all sorts of things including lukemia. Bizarely enough my wife has it too and developed it/was diagnosed at 19.
My theory of sexually transmitted hypothyroidism (from my wife I might add) was never investigated by any endocrinoligists or GPs 🙂
More thoughts. I was diagnosed correctly by my GP in about 20 minutes, confirmed by blood tests. As you'll probably know this is an auto immune condition, but there are often other factors. For me it came on a short while after my dad was killed in a car crash, and I've always thought there was a stress ralated element. And one of our daughters developed vitiligo in her teens - another autoimmune condition often related to hypothyroidism.
Active life ? That's me. Windsurfing today all being well 8)
Just seems odd that the labs only offer TSH, hell we can measure T4 in house if need be!
Labs can measure it but it costs money and therefore if your GP asks and doesn't make it clear as to why they often assume that it is simply for assessing whether dose of replacement is correct and just do TSH.
Ah money, often have the same issue. Still seems a little odd but makes more sense now. Thanks.
If I request FT3 or FT4 I get it.
Varies from place to place I guess.
hope you get it sorted out.
I would really appreciate a bit more info from sufferers. Specifically, did your GP diagnose/treat you or were you referred to an Endocronologist?
Can one insist on being referred to an Endocronologist?
As always, thank you so much. 🙂
Initially diagnosed by the GP and always been treated by them, never been referred to an Endocrinologist. I'm pretty sure you can request it though.
my friend was born without a thyroid and still has to fiddle about her medication (not helped by her varying compliance!) and receives regular appointments to monitor and adjust things. fire me an email if want her address she'd be happy to field questions from a patient point of view and she's doing medicine so can go into more depth if need/want
thought you would have been referred to make sure dosage is sorted?
EDIT: eb has answered that question
Thanks for the replies. 🙂
Never seen an endocrinologist. Had gone to my GP because I'd almost fainted and blood tests caught severe anaemia and the underactive thyroid. Actually just had another increase in dose after a pre-op assessment at the hospital, which has led to the ops being delayed 'til my results are back "within range" again.
GP for me too, original diagnosis and ongoing maintenance. Did see an endocrinologist once for an investigation into whether my adrenal gland was involved in the plapitations, but a null result.
Any medical people on here that can answer this question please?
I would really appreciate a bit more info from sufferers. Specifically, did your GP diagnose/treat you or were you referred to an Endocronologist?Can one insist on being referred to an Endocronologist?