Gransnet forums

Health

Thyroxine and underactive thyroid

(63 Posts)
TerriBull Wed 15-May-19 08:12:17

Apparently there has been a report in the BMJ that suggests that there are no significant benefits in taking Thyroxine although the advice to GPs is that patients should continue taking it.

I was diagnosed with an underactive thyroid, probably about 20 years ago, I thought Thyroxine would prove to be some sort of silver bullet but I never felt it did much to alleviate my symptoms, particularly tiredness.

I'd be interested to know, if you have this condition, have you found Thyroxine beneficial.

janeainsworth Thu 16-May-19 12:06:39

Terribull Yes I think Malcolm Kendrick is a brave man. I’d rather like him as my GP though.
Enjoy your break ?

Nannyxthree Thu 16-May-19 11:42:05

I've always taken mine first thing in the morning with my early cuppa - didn't know about taking it with water. It probably is about 30 to 40 minutes before breakfast. No history of thyroid troubles in my family before that. I moved from one side of the country to the other and there is a high incidence of under active thyroids here although mine started as hyper active when I was in my 30's. Very tired and very stiff joints were the first symptoms which I attributed to work and a young family for months. I was treated by radiated iodine and that caused the under activity I now have. One of the DC has fibromyligia and had the thyroid test privately which showed an under activity which the NHS test didn't.

Willow500 Thu 16-May-19 11:14:58

Hmm - my son's doctor (NZ) told him to take it first thing in a morning before eating. I've always just taken all my pills at breakfast so perhaps I should try this. Trouble is when you're up at 5 and have to do breakfast straight away it's hard to wait an hour. Maybe the bedside idea would work - I'll try it tomorrow.

TerriBull Thu 16-May-19 09:36:43

Apologies for not coming back to this thread yesterday, and it will probably be the same today, we are away from home and tend to be out all day.

TerriBull Thu 16-May-19 09:29:54

Read your link regarding the opinion of Dr Malcolm Kendrick Jane, have read articles by him before and find a lot of his thoughts interesting, isn't he regarded as a bit of a loose cannon by the NHS?

I think this has also been brought up before, in the USA some under active thyroid patients are treated with a drug called "Armour" derived from pigs I believe as opposed to the synthetic drug we take here. Many have expressed that this is more successful in treating the symptoms so many of us complain about. NICE haven't approved Armour here, which in any case would be a lot more expensive than Levothyroxine. When Hillary Clinton made her medical history available, I was interested to see she was taking Armour.

janeainsworth Wed 15-May-19 23:03:27

Not just hyperthyroidism joyful
www.womenshealth.gov/a-z-topics/hashimotos-disease

Joyfulnanna Wed 15-May-19 22:37:53

Hyperthyroidism (overactive thyroid) is an autoimmune condition, like diabetes, lupus, psoriasis, rheumatoid arthritis. It can occur following stressful situations such as childbirth, loss, and any other environmental factors. I do believe that there is evidence that hypothyroidism runs in families but whether it qualifies as 'robust' I'm not sure. The way is starts is subtle at first, strange symptoms that a GP can misdiagnose. Even with 'normal' blood test results, some people find they are symptomatic or have a goitre. Only when it goes so far off the normal range, are people given thyroxine. One poster earlier said it can happen during menopause and I agree with that. It can make you feel like you're going crazy.

janeainsworth Wed 15-May-19 20:28:21

joyful yes it’s important to take it first thing, before any food. I keep mine by my bed & take it as soon as I wake up. I asked the doctor about caffeine & he said tea was alright, just don’t have s double espresso within an hour of taking it.

GG3 There used to be an environmental cause (lack of iodine in the water supply) but I think iodine levels are supplemented now.
From what I’ve read, the thyroid can be damaged by certain viruses, or hypothyroidism can be an autoimmune condition.

lemongrove Wed 15-May-19 20:22:20

Joyfulnana yes, those instructions are true ( take it first thing with water and nothing else for an hour) and I have followed that as it’s printed on my prescription ( and should be for everybody.)

GracesGranMK3 Wed 15-May-19 20:15:01

You do wonder if it's environmental Luckylegs . I am low thyroid, so is my daughter and her father. My son has escaped so far - he lives in Australia and I do wonder if, for some reason, that has made a difference.

Luckylegs Wed 15-May-19 20:10:48

Thank you Joyfulnanna I don’t think I’ve ever taken it properly then! I have a cup of tea first thing, then my breakfast and then get round to taking my tablets at some point in the day, possibly later in the afternoon or evening! Well, I do take hundreds of the damn things!

Luckylegs Wed 15-May-19 20:07:43

Underactive thyroid problems run through our family. My mum’s whole family suffered from thyroid problems of one sort or another - some had a goitre, most had underactive. Particularly prevalent in South Yorkshire and some were from Derbyshire where the goitre was known as Derbyshire neck. Don’t know if there’s a shortage of iodine round there?

One of my brothers had an overactive thyroid, another brother (and his wife and daughters!) are underactive, so am I. When I told the GP this history, over 30 years ago, there was no hesitation in referring me and I’ve taken Thyroxine ever since. I’m on 150 mcg now but I may have it reduced soon when my results come back. I’d no idea too much could cause other problems. I’m not convinced it does any good, as I’m still a cold soul, still tired, hair thinning, etc.

GracesGranMK3 Wed 15-May-19 20:04:06

Good thread. I think this sort of thing is when GN is at its best.

Joyfulnanna Wed 15-May-19 19:37:51

If you're overweight (and who isn't), even if you're taking thyroxine, you can still feel tired all the time. Also do not take thyroxine with anything other than water first thing on the morning and don't eat for at least 30 mins, preferably an hour. This gives your system more time to properly absorb it. Food and tea/coffee interferes with absorption so the effect of t4 isn't fully absorbed. The pharmacist told me this and I now heed her advice and have felt more energised throughout the day.

Nannyxthree Wed 15-May-19 18:12:11

I've been on levothyroxine for nearly 30 years and have had the dose adjusted several times. If the dose isn't right I get a jittery feeling and generally unwell. 75mcg seems to have suited me well for several years now. I don't get the cold hands and feet but have becoming increasingly tired and fall asleep easily as the years go on. Don't know how much of that is age though. I wouldn't want to stop taking it but think some improvements are overdue.

Welshwife Wed 15-May-19 18:10:18

The consultant has done so but so far to no avail.

janeainsworth Wed 15-May-19 17:50:43

Crossed posts welshwife.
That is shocking that your DD is being denied a drug which gives her so much benefit. Can she appeal against the health board decision?

janeainsworth Wed 15-May-19 17:47:47

This article is long but very informative.
www.google.co.uk/amp/s/drmalcolmkendrick.org/2015/05/01/treating-thyroid-patients-like-children/amp/

Basically, levothyroxine which is what most patients are prescribed, =T4.
T4 is a hormone precursor which has to be converted in the body to T3. Some patients’ bodies can’t do this.
But for some reason the NHS is reluctant to prescribe T3.
So if levothyroxine doesn’t work for you, you need to have a conversation with your GP & perhaps ask for a referral to a consultant endocrinologist.

I’m one of the lucky ones for whom T4 works, but I have found that the dose is really important. I’m also lucky that my GP listens to me & is happy to adjust the dose when I feel I need it.

Welshwife Wed 15-May-19 17:41:06

Have any of you been prescribed T3.? DD has taken thyroxine since being pregnant - she moved areas about 4 years ago and the new endocrinologist also put her onto T3 which she found was really good and improved her quality of life. Not everyone can tolerate T3. Now her health board has stopped the doctors prescribing it on the NHS - although only about10 patients across the whole health board take it - to buy it privately it is about £300 a month whereas in France the same drug is £9 for a months supply,

Willow500 Wed 15-May-19 17:29:15

I've been on thyroxine about 25 years on ever increasing doses - I was on 125 mcg until diagnosed with Atrial Fibrillation 3 years ago when they reduced it to 100. I've always known there is a possibility of heart problems taking too much and they said this could have been one of the causes. I've since put on weight and feel tired and am always cold but don't know if it's related.

My husband was put on it 6 months ago again on 100 msg after a routine blood test and does seem to be less tired. Youngest son was diagnosed about 4 years ago. My mum was on a tiny dose for years too. I don't know if it's hereditary.

chattykathy Wed 15-May-19 17:18:56

I'm the same, I'm on 100mg daily but don't feel any difference

lemongrove Wed 15-May-19 17:10:04

I have never felt any difference since taking thyroxine, but perhaps would feel worse now if I wasn’t taking it, so who knows?I certainly feel tired easily.

Sar53 Wed 15-May-19 17:04:46

My 42 year old daughter was diagnosed with an under active thyroid about a month ago after suffering a variety of symptoms for a very long time. She has just started taking thyroxine, not sure if it has made a difference yet.

Nonnie Wed 15-May-19 16:55:57

NanKate that is a higher dose than me and I don't have a thyroid gland!

I haven't seen the research but if they are looking into dosage I think its a good thing. I have long felt that what they consider 'normal' thyroid function is probably out of date.

NanKate Wed 15-May-19 16:49:08

Terri I too have been on thyroxine for over 20 years and have told countless doctors that I do not feel any benefit. I fight fatigue on a daily basis. I am seeing the Doc tomorrow and will bring up the subject of me sleeping too much but to be honest I have little hope of any help. I was on 150 mcg a day which they have twice reduced to 100 mcg against my wishes.

I have heard that large doses of Vit D which I am on can reduce the effectiveness of thyroxine and this will be on my list to discuss with the doc.

I wish I could give you positive info. I suppose the only thing I have managed to do is lose weight by calorie counting and eating smaller portions of food and walking every day.