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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.

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.

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!

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.

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.)

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.

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 23:03:27

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

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.

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.

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.

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.

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 ?

Welshwife Thu 16-May-19 12:14:30

OH has his supply of thyroxine in the bathroom and when he gets up to pop in there about 5/6am he takes a tablet then and so has a good hour or more with no tea/coffee/food etc before he gets up for the day.

toscalily Thu 16-May-19 14:09:44

I was always told to take my tablet first thing in the morning with a large glass of water, leaving half an hour at least before eating. More recently the information has changed to include not consuming caffein for at least a half hour after taking otherwise the Thyroxine will not be absorbed by the body correctly. I am not bothered about breakfast as I rarely feel hungry in the morning but it means you can't just get up and have a cup of tea. I can manage the half hour, just! hmm

Nonnie Thu 16-May-19 16:20:28

Interesting Joyful I asked the pharmacist if it was OK to take it with coffee and he said it was! I'll go and ask a different one.

A question, if taking it with coffee stops it working, wouldn't that mean the blood tests would say we were not taking enough?

Farmor15 Thu 16-May-19 16:32:06

I have no thyroid since thyroidectomy about 12 years ago. I take thyroxine, 100 mcg a day- same dose since op- and feel fine. I take mine first thing in the morning with a cup of coffee. I usually don’t eat for an hour or so. It's obviously absorbed sufficiently as blood tests are fine. Apparently calcium interferes with absorption, so too much milk with coffee or tea would not be a good idea.

A lot of people take calcium supplements and if these are taken at same time as thyroxine it won’t be absorbed as well. Absorption of other meds can also be affected by calcium- if supplements taken, it’s better to take at night, I think.

pinkquartz Thu 16-May-19 16:47:22

I am on Thyroxine and also take a natural thyroid.
I still feel tired and have weight gain but I have other illnesses so I never know what causes what.

Both my parents are hypothyroid and one set of grandparents also my daughter is so I do believe that it is hereditary.
I have had discussions with my GP over taking a natural Thyroid but this is what my grandparents took and my father when he was first diagnosed. back in those days they didn't do the blood test, they took him into hospital for observations and worked it out.

I used ot be able to take Armour Thyroid and I did feel better on that one but NICE have stopped it. I don't know why.

I have read that the blood test normal is a low estimation based on healthy males and can be inaccurate for women who have different hormone changes in out bodies.

toscalily Thu 16-May-19 20:26:12

These may be of help to some who take Thyroxine:

thyroiduk.org/tuk/diagnosis/getting_diagnosis.html

www.btf-thyroid.org/resources/news-archive/413-over-treatment-of-subclinical-hypothyroidism

Joyfulnanna Fri 17-May-19 00:49:08

Good links tosca. I think we've all learned something from them. I have tried taking my dose split between morning and evening and also felt the benefit. I've stopped that now because I kept forgetting the evening one. However if I were a shift worker, I might take my dose in the evening. Its best to take it before your day starts whatever time that is. I agree it's hard waiting even 30 mins before tea/coffee. I have to take another tablet for my acid reflux and not eat for an hour after that so I wait until I'm at work to habe my breakfast.

Farmor15 Fri 17-May-19 10:42:48

Joyfulnanna - if you're on medication for acid reflux it may affect absorption of thyroxine as it reduces stomach acid:

www.pharmacytimes.com/publications/issue/2016/january2016/drugs-affecting-levothyroxine-absorption

Though reading the article, it just means dose of thyroxine should be adjusted to compensate.

Nonnie Fri 17-May-19 11:22:37

Thanks for the links. I didn't read the first one because it was about diagnosis and I don't have a thyroid gland so don't need it.

The second one was helpful because it clarified what we had seen in headlines.

Regarding the third, am I right in thinking (as Joy suggests) that if other meds interfere with Levothyroxin it doesn't really matter because our blood tests will allow our GPs to give us a dosage which compensates?

Farmor15 Fri 17-May-19 12:52:14

Nonnie - yes, blood tests would show if levels weren't right, whether due to other medications, taking with food etc. I think the main thing is to be consistent - taking it at the same time, with or without tea/coffee and other meds. Then when blood tests are done, dose can be adjusted if necessary.

Since I don't have a thyroid, I know it's important to take it, and find it easier to have beside the bed and take with morning coffee.

Nonnie Sat 18-May-19 16:55:34

Thanks Farmor that is just what I do. Although I didn't take it until after my blood test last time and it came back normal. Previously every time they did a test they reduced it further and I'm on 650 mg a week which is not a lot for someone without a thyroid.

mokryna Sun 19-May-19 09:16:00

Oh dear, I have just realized that I should take my dose Levothyroxin with water. I can't remember what was said at the time of the prescription being given. Always in a rush in the morning I gulp it down with an instant black coffee before dashing out of the door. However, I have been sleeping better and able to lose a little weight.

Grannybags Sun 19-May-19 10:01:52

My husband takes Thyroxine and was told to take it first thing in the morning with lots of water an hour before he eats.

Very inconvenient!