thyroid issues

[Juju]

Hi.

I'm trying to get as much info as possible on thyroid-related stuff.

I've been suffering for several months with fatigue and widespread muscle pain (shoulder/hips/knees/hands, etc etc etc), which is cramping my style big time. I've had to give up a lot of activities that I used to enjoy; walking is a problem and has been painful/difficult since last year. Sometimes it's so bad that I can only limp.

I was diagnosed as subclinically hypothyroid a couple of weeks back. Serum TSH was 6.23; free T4 was 14.9; not had any other tests as yet. I've been put on 25mgs thyroxine and have noticed no change yet. (TSH was 5.63 in October, but no one bothered to tell me.)

I've been doing a lot of reading on thyroid issues and am getting the general impression that a lot of patients - and doctors - are questioning the validity of tests which consider a TSH above 3.0 to be normal.

I don't know how much of my problem is due to thyroid malfunction, but I need to find out as much as possible about it, even if that just means I can discount it as a serious issue and look elsewhere for a cause for my chronic pain.

If you have any experience of dealing with hypothyroidism of any kind, I'd appreciate some useful information.

In particular, I'd like to know:

How long should I expect to wait before feeling better?
How often should I get tested as I work out what the correct dosage is?
What is the best dosage in your experience?
Has anyone out there experienced similar symptoms and seen them improve with thyroxine treatment?
What TSH level would you personally recommend?
What other tests/levels would you recommend?

Obviously, this is asking for some fairly personal information, so feel free to PM me if you feel you can help.

Thanks.

[Andy McGregor]

Firstly, I must say that I have no expertise in matters thyroid. However, I have worked in medical research and Pharmaceuticals for 3 decades and attended more lectures and talked with more doctors & nurses than I can remember.

One thing I'm quite sure of is that some doctors and some patients are too quick to apply a diagnosis. This results in the patient receiving a treatment for a condition they do not have. Sometimes a treatment is given as a diagnostic tool. If you have some of the symptoms of a condition and receive a disease specific treatment then it makes diagnosis a lot easier if that treatment works - if it doesn't, the doctor is left wondering if the treatment failed or the diagnosis was wrong. This may not be the cutting edge of evidence based medicine, but it happens a lot. It's a bit like taking your overheating car to the garage: they think it's probably the thermostat so they change it: if the problem is unchanged the thermostat wasn't the cause: so they try something else and something else until the problem goes away - what ever they changed last was what caused the problem. All the time they're trying things you're driving around in a hot car!

It seems to me that what you need is a clear diagnosis of the cause of your problems.

The best advice I can give you is to keep going back to your doctor until you get to the bottom of your condition, whatever that might be. Do not be the car driver who accepts that his car is now hot - "the garage tried but couldn't find the cause so now I live with it" When you are given a treatment ask how long you should give it to work. And go back if it hasn't worked in that time. If you are now on a treatment you can always ask your local pharmacist - this is what they're trained for.

The other advice I can give you is to take something for the pain. If ibuprofen/paracetamol you can buy over the counter don't work you need to get something stronger from your GP. There is absolutely no need to suffer pain. I'm going to say it again, just for emphasis: there is absolutely no need to suffer pain. If your GP can't help you, there are pain specialists who can - ask for a referral if you are still in pain. Do not be one of those patients who says "I don't like to take painkillers": it makes as much sense as someone in a cold house saying they don't like to use the heating

[Juju]

Thanks for your comments, Andy.

One thing I'm quite sure of is that some doctors and some patients are too quick to apply a diagnosis.... It seems to me that what you need is a clear diagnosis of the cause of your problems.

Fair point; I completely agree. However, the thyroid issue could well be a part of the problem, if not the whole story - particularly as my test results have shown an increase in TSH as my pain has become more widespread. I'm trying to clarify things, so that I can get the best treatment, asap.

I'm going to say it again, just for emphasis: there is absolutely no need to suffer pain.

Once again, fair point. However, I've pretty much given up on painkillers, having taken them (sometimes in combination) until they're coming out of my ears, to very little effect. I'm sick of taking them and, more importantly, if the pain is bad then I know I have to be careful - a major symptom for me is the fact that pain tends to lead to muscles getting strained and so leads to even more pain.

[Barry Shnikov]

You have my sympathy. Being unwell is miserable.

I was diagnosed as subclinically hypothyroid a couple of weeks back. Serum TSH was 6.23; free T4 was 14.9; not had any other tests as yet. I've been put on 25mgs thyroxine and have noticed no change yet.

'Couple of weeks' doesn't sound long. How long were you told would pass before improvements would be noticeable? Was there any information given to you on the success rate of the treatment - some treatments are only 50% effective and for only 50% of patients; some are 99% for 99%. I endorse what Andy says about going back to whoever diagnosed and prescribed for you and asking the penetrating questions.

I've been doing a lot of reading on thyroid issues and am getting the general impression that a lot of patients - and doctors - are questioning the validity of tests which consider a TSH above 3.0 to be normal.

Be careful with 'reading'. Anything patients may feel is hopelessly subjective, and should be pretty much filtered out. Remember that almost by definition satisfied patients will not be flooding on to the internet to say how well they did under the treatment - they will be getting on with their lives. This invokes a phenomenon known as 'confirmation bias'.

As for doctors - many doctors are only too happy to make pronouncements about matters on which they know little. Their motives are not always pure. (cf. Andrew Wakefield - I wonder if he's looked up how many children have been damaged or killed by measles since he started the vaccination fiasco.) By all means listen to what doctors say but weigh their statements according to the likelihood that they know what they are talking about. A GP's opinion should hold much, much less weight than a specialist endocrinologist; and a orthopaedic consultant's no more than a GP.

I don't know how much of my problem is due to thyroid malfunction, but I need to find out as much as possible about it, even if that just means I can discount it as a serious issue and look elsewhere for a cause for my chronic pain.

How long should I expect to wait before feeling better?
How often should I get tested as I work out what the correct dosage is?
What is the best dosage in your experience?
Has anyone out there experienced similar symptoms and seen them improve with thyroxine treatment?
What TSH level would you personally recommend?
What other tests/levels would you recommend?

Please Juju be very careful before extrapolating other people's experiences. There are plenty of medicines that, at levels prescribed for one person, can be dangerous for another person.
If you are uneasy it is absolutely crucial that you mine the facilities of the NHS before wobbling off on a bicycle supported by anecdotal evidence and half-formed opinions. Ask for second opinions, referrals, try NHS direct, etc. etc.

And I wish you the best for your recovery.

[Juju]

Thank you for your kind comments, Barry.

'Couple of weeks' doesn't sound long. How long were you told would pass before improvements would be noticeable?.... I endorse what Andy says about going back to whoever diagnosed and prescribed for you and asking the penetrating questions.... By all means listen to what doctors say but weigh their statements according to the likelihood that they know what they are talking about. A GP's opinion should hold much, much less weight than a specialist endocrinologist; and a orthopaedic consultant's no more than a GP.

My GP said my hypo was minimal, put me on the lowest dose of thyroxine and said to come back in 6 months; the thing is, the tests I had may not indicate how well my system is actually using the thyroid hormone - I think I may need T3 and also antibody tests. He is also referring me to a rheumatologist - and a neurologist, after some really bizarre symptoms appeared recently. However, they seem to be fading so I might cancel the neurologist and go for an endocrinologist instead! (I was also referred to a physiotherapist, but was told they had no treatment to offer me. )

Remember that almost by definition satisfied patients will not be flooding on to the internet to say how well they did under the treatment - they will be getting on with their lives. This invokes a phenomenon known as 'confirmation bias'.

Again, a totally fair point. I'm aware that I'm not going to read much in the way of success stories, but thyroid treatment does seem to be an area of fairly major controversy. I've also had a look at some hefty biological text books (partner is a zoology graduate!) but they didn't tell me a great deal, hence my request for information on other people's experiences.

The way I see it, the more information I can get, the better armed I am when I discuss this with the medics. I'm very assertive with medics, but I can't do it in a vacuum. It may well turn out that the thyroid issue isn't serious (though it may well become serious over time), but if I just do nothing and don't pester people and don't try, then I could be sitting here this time next year, no better off than I am now. I intend to explore every possible avenue in order to get better. It’s a chore and it’s deadly boring, but so is being ill all the time.

[Donna]

I suffer from hypothyroid and I must say it's it can be hard to cope with sometimes.

I was diagnosed about 5 years ago after having to take 6 weeks sick from work - I was feeling weak from exhaustion, my muscles were constantly aching, I couldn't breath properly, my hair was starting to fall out, and I was in bed practically all day everyday. I thought I had depression as I'd but on a bit of weight (which I must say I was pleased about with struggling to put on weight most of the time) and I lost interest in everything.... even dancing, that's when I knew something was seriously wrong.

I just about found the energy to get myself up to the doctors, and straight away he took a blood test. A couple of days later I had the results... he said I had underactive thyroid. Since then I've been on medication only having to increase the dose twice, again just recently to 100s.

As you get older, you start to produce less and so your dosage will keep going up, and so now I have to have blood tests done every six months apart from when I start to feel unwell again, then I ask for one to be taken.

I feel so much better in myself now, my hair and skin is much better. I still may have the odd day where I feel exhausted, but not too tired to dance! If I am then I know it's time for another trip to the docs!

It took at least a couple of weeks of taking the medication at first for it to work its way around my system and feel the difference it was making.

and yes... it's hereditary. My mum, dad, gran, cousin and aunty all have it.

[Linc_Static]

Hey Juju,

I've never suffered hypothyroidism, but for what it's worth I'm currently doing a medical course at uni. Bear in mind though, that I've not finished my degree yet, so take anything I say with a grain of salt.

From what I know, hypothyroidism presents with many different symptoms, including the muscle pain and fatigue that you mentioned before. Thyroxine would reduce these symptoms and more, if it is indeed due to your hypothyroidism. However, it seems that your pain levels are quite high for the symptoms that you are suffering.

Also, do you have any signs of an enlarged thyroid?

About the hormone replacement... hormone replacement is always a tricky business because it varies so much with people. If after a few weeks there still is no effect, go back to your doctor and ask him about raising your thyroxine medication. However, you should probably know that it's a bit of an art getting prescription hormone levels right. It may take a while.

I'm not entirely sure if I've said anything helpful at all, but I do hope it's been of some help to you.

[Juju]

I feel so much better in myself now, my hair and skin is much better. I still may have the odd day where I feel exhausted, but not too tired to dance! If I am then I know it's time for another trip to the docs!

It took at least a couple of weeks of taking the medication at first for it to work its way around my system and feel the difference it was making.

Thanks for that - I'm probably being a bit impatient because I'm not 100% sure what I'm dealing with.

I've also put on weight - which I never do; my weight has always been very stable - although this could also be due to a gradual drop in activity levels. I'd really like to get my lardy arse onto a dance floor, but that's just a pipe dream at the moment....

[Juju]

From what I know, hypothyroidism presents with many different symptoms, including the muscle pain and fatigue that you mentioned before. Thyroxine would reduce these symptoms and more, if it is indeed due to your hypothyroidism. However, it seems that your pain levels are quite high for the symptoms that you are suffering.

I agree, my pain levels are pretty high! I was wondering if it's a combination of a thyroid problem and a rheumatological one (great!), which just confuses things even more.

Also, do you have any signs of an enlarged thyroid?.... However, you should probably know that it's a bit of an art getting prescription hormone levels right. It may take a while.

Not that I know of... and yes, I know!

I'm not entirely sure if I've said anything helpful at all, but I do hope it's been of some help to you.

Any comment is greatly appreciated.

[batnurse]

I was diagnosed with hypothyroidism about four years ago. I put on three stone in weight, would be falling asleep on my feet, and started to get pins and needles and numbness in my hands (not good as I worked in a rabies research lab at the time )
My GP diagnosed the problem but said that I was too young to have an underactive thyroid so I would only ever need 25mcg of thyroxine. I had to pay to see a private endocrinologist who then wrote to my GP and told her to start upping my dose until I felt better.
I'm now stable on 175mcg, have lost two of the three stone, and feel much less tired. I've never really felt 100% better, but I can live with the level of fatigue I suffer from occasionally.
Increasing your thyroxine has to be done very slowly, as it increases your basal metabolic rate - which includes your heart rate too. Thyroxine is a very slow acting drug, and has a half life of at least eight days in the body, so any change takes a long time to show.
Hope this helps, good luck!

[Juju]

I put on three stone in weight, would be falling asleep on my feet, and started to get pins and needles and numbness in my hands (not good as I worked in a rabies research lab at the time )

Increasing your thyroxine has to be done very slowly, as it increases your basal metabolic rate - which includes your heart rate too. Thyroxine is a very slow acting drug, and has a half life of at least eight days in the body, so any change takes a long time to show.
Hope this helps, good luck!

Thanks for that. It looks like maybe I'm being a little impatient.

I get the pins and needles too. I'm also seriously miffed because I discovered today that, for the first time in my life, I'm classed as 'overweight'; I'm five feet tall and have put on over half a stone in a few months.

[Juju]

My GP diagnosed the problem but said that I was too young to have an underactive thyroid so I would only ever need 25mcg of thyroxine. I had to pay to see a private endocrinologist who then wrote to my GP and told her to start upping my dose until I felt better.
I'm now stable on 175mcg, have lost two of the three stone, and feel much less tired. I've never really felt 100% better, but I can live

Interesting that this seems to reflect a lot of people's experience of thyroid problems: i.e. not being listened to/being undermedicated until they kick up a fuss!

[Night Owl]

thyroid problems very much trial and error to control and yes you will find some dr.s not understanding what you are going thru as we don`t all follow the text book,prob cause we never got to read it

I was over active heart racing could stand heat bright light and 101 other syptoms
then was like i went over a cliff turned into a zombie was off work over 3 months lost 4and half stone
Treated with proprananol and carbrimasol felt great
pardon spelling but due to type of thyroid condition I
Then got bombed with radioiactive iodine killed thyroid altogether
now underactive on 200mg thyroxine for life
Been fighting to get other treatments for 13 years now as have always felt the thyroxine never reproduces every thing the body would produce naturally,did get on to Lithyronine for a while but caused problems with heart
Levelling out the throxine levels does take months so hang in there

[Juju]

Been fighting to get other treatments for 13 years now as have always felt the thyroxine never reproduces every thing the body would produce naturally,did get on to Lithyronine for a while but caused problems with heart

Have you tried Armour, the naturally-produced stuff? I don't know much about it, but it might be worth a try.

[batnurse]

Have you tried Armour, the naturally-produced stuff? I don't know much about it, but it might be worth a try.

Armour is made from mushed up pig thyroid glands, contains variable amounts of T3 and T4, and is not licenced in the UK.

[Night Owl]

Did try to get it but unavailable
Did get another pig based thyroid but wasn`t great
In the states there are quite a few dif treatments but none available with out prescription

[Barry Shnikov]

Interesting that this seems to reflect a lot of people's experience of thyroid problems: i.e. not being listened to/being undermedicated until they kick up a fuss!

Ahem.

This is exactly what I was trying to caution you against, JJ.

This forum is a pretty small sample, and yet you are starting to draw conclusions.

On the other hand, GPs do - in my view - have a tendency to fall into the 'let's give them something and see whether they come back' strategy. There are so many reasons why people go to the doctor with something that - in a significant proportion of cases - will blow over in a week or two. If they swing into action with the full majesty of modern pharmacology it will be a) expensive and b) possibly counter-productive.

They say "take one of these three times a day with meals and come back if there's no improvement after 21 days", but the patients seem to hear "This is all I've got: if it doesn't work then it's curtains. Throw yourself on the mercy of the internet quacks."

So go back to the GP and say "I'm in agony, either this isn't hyerthyroidism or the dose is too small or I need a different medicine." That's what you're supposed to do.

[Barry Shnikov]

Armour is made from mushed up pig thyroid glands, contains variable amounts of T3 and T4, and is not licenced in the UK.

Sounds very dangerous.

(I notice that JJ seems to attach significance to the idea that it is 'naturally produced'. What's natural about mashing up pigs thyroids, I wonder? Give me something produced in a hypoallergenically clean production line any day.)

[Barry Shnikov]

I wonder what the incidence of hyperthyroidism is in the general population?

Reading this thread I'm beginning to wonder if dancers are over-represented - I never knew anyone before with a thyroid problem and here are half a dozen.

{Pause}

Wait a minute, I did know a delivery driver who had thyroid problems. His was over-active, IIRC...

[Juju]

Armour is made from mushed up pig thyroid glands, contains variable amounts of T3 and T4, and is not licenced in the UK.

Okaaaay. That's pretty gross. I like pigs too!

Did try to get it but unavailable
Did get another pig based thyroid but wasn`t great
In the states there are quite a few dif treatments but none available with out prescription

Best of luck with your treatment anyway.