[Closed] Underactive thyroid - anyone have experience of this please?

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.