Hypothyroidism

When you say 'magnesium baths' Bez what actual magnesium compound does she use?

Been on 100mcg levothyroxine for a good 12 years and live quite normally. I must be one of the lucky ones.

Thank you to the person who mentioned taking the Levothyroxine in the evening - will mention that to DD.The last time she saw the endo man he told her she was no longer producing any thyroxine herself but that it would eventually kick in again.
Anya she is also doing as your DD and taking walks and also going swimming often. She tells me the best thing she has found is the magnesium baths which she is having very regularly - stays soaking in them for 20 mins each time - seems it is a more efficient way of absorbing it than the pills.
She finds the weigh issue difficult - and try as she might almost impossible to lose weight and keep it off. She took 100mgs for 20 years and is now on 150 - although the GP wants her to cut it down but has agreed to her remaining on the higher dose at least until she sees the new Endocrinologist in Yorkshire

Thanks Anya

It's not all people with an underactuve thyroid that suffer this terrible tiredness or have to cut out so much NanKate. Some do very well on Levithyroxine with minimal side effects.

I had read up on this and Janea's link sums up and reinforces what the literature and research suggests, ie that about 10% of those who suffer from hypothyroidism cannot efficiently process their medication by converting the prothyroxin T4 into the T3 neccesay to 'do the job' as it were. It's a genetic abnormality on some specific gene whose name and number escape me.

This means that they might as well not take the medication for all the good it does. I suspect that some more 'senior' thyroid suffers, might find their system less able to utilise their medication as they get older.

Brassicas, especially in larger amounts or raw, also inhibit the uptake of thyroxine so should be taken in small amounts, preferably cooked and not close to the time that medication is usually taken. Other research suggests limiting alcohol and foods containing gluten. But I repeat, this is only for the 10% mentioned above.,

It's a very interesting topic and we're all, in our family, on a sharp 'learning curve' but I'll certainly keep the thread open (or bump it) re new developments for the benefit of all

Phew NanKate! That IS good news. Yes I stick to my vino with evening meal. Yes, eyebrows much thinner, and - no delicate way to put this - don't have to worry about underarms these days as nature took care of that. I too have tinnitus but it only bothers me when everything is quiet. Oh, the joys ........

Hi Bella good news I glug wine and I am fine with that as long as I have it in the evening. If I drink even one glass at lunchtime I feel my eyes going.

I too go to Keep Fit at my best time of day early morning but make sure I have a quiet afternoon.

I have learned to accommodate the illness, but it is much easier now I have retired.

Anyone noticed that they have lost the outside edge of their eyebrows like me ? This is part of having an under active thyroid, as is having tinnitus as I do too.

Anya I am unfortunately not able to offer any advice for your daughter, but thank you for opening up this thread as I have learnt quite a lot myself. I was diagnosed hypo in my thirties, some 40 years ago. Along the way the thyroxine was upped to 100 and I am still on that. I feel really tired now but have put it down to a succession of chest infections over 4 months. I now wonder if it's thyroid related and in fact I'm just now waiting for blood results to come back. I didn't know about the other test and thank you to the gran who suggested that. Because I was diagnosed 40 years ago I was not back then given any information about brassicas and alcohol. I wasn't given any advice at all and have blithely gone along taking the tablets and having annual blood tests over the years. Brassicas, yes, I can manage without, but no wine.......??
It's tough for your DD working in secondary education and the demands that makes. I hope she gets to see an endo person quite soon, and it would be good if you could reopen the thread as and when she gets some help. Some of we grans probably put our lethargy down to age, but this thyroid discussion has shown that there could well be hormonal reasons for it. As someone else said, I force myself to the gym because I feel I must, but this tiredness doesn't seem to improve. I hope your DD gets the help she deserves Anya.

Thank you all again, there is such a wealth of knowledge on GN. My DD's thyroid problem was also pregnancy induced Bez, it was when she tried for a second child and had two miscarriages that the condition was diagnosed. With the help of thyroxine she managed to take a pregnancy to full term and had a second son.

She's not one to complain, or confide much, so over the last 5 years she has been putting this debilitating tiredness down to motherhood and full time teaching, but it's become increasingly obvious that it goes far beyond that.

She is obviously one of those minority who cannot use the thyroxine efficiently as her body lacks the capacity to convert T4 into the T3 form at cellular level. We are pushing to see an endocrinologist now that that has been suggested. I'll also suggest she try taking her tablets at bedtime.

Bless her, she's doing all she can diet wise, cut out so much and forcing herself to go out for a good walk whenever she can even though she is exhausted after a days secondary teaching, she has two you boys and their sport and hobbies to accomodate and her husband works shifts.

Again, thanks for all the infirmation and support

Bez I have been thinking about your comment They will not give it in UK for no other reason than cost - it is almost 40 times more expensive than the Levothyroxine which costs very little.

I was told that when you have a diagnosis for Hypothyroidsm you become eligible for free prescriptions for everything. This obviously doesn't affect those of us over 60 (I was walking on air when I realised the doctor who told me thought I was under 60 ) but must cost a pretty penny for those under 60 as there are so many conditions, often small in themselves, that are symptoms of this disease but not always controlled by the Levothyroxine and then have to be treated in other ways. Also, not treating it as affectively as possible may well often limit the working ability of the sufferer.

Yet again a very short sighted decision by NICE I feel.

I was diagnosed hypothyroid in 1988. It took 2 long years (lots of ups and downs) before I felt that I was improving. I went back to work but found I no longer had the stamina I once had, so changed my hours to part time which seemed to suit me better. After many years, I finally decided that my body was never going to be like it used to be and adjusted my lifestyle to suit my new body. I still don't have lots of energy, but I manage most days. (I do have lots of sitting down breaks throughout the day).

Anya I do feel so much for your DD. I have battled with my thyroid for over 20 years. Different doctors have tried to reduce my thyroxine dosage to the point where I was only really functioning properly for about 7 hours a day.

My present doctor has agreed to put me back up to 150 mcg a day even though she says the tests say I am overdosing on it.

The only advice that I can give your DD is the following. Take the thyroxine tablets at bedtime. I read an article on this being the optimum time and I have noticed an improvement since doing this.

I know this could be tricky work wise for your daughter but whenever I can I take a timed 20 minute nap. It is important not to sleep longer as you go into a deeper sleep with a longer time which is counter productive. When I was working I have been known to pop into the car at lunchtime, set the timer for 25 mins, 5 to go off 20 to sleep. This strategy helped me then and does now when I am helping look after the GSs.

Best of luck to your DD.

My DD has had pregnancy induced low thyroid for over twenty years. After DGS was born she went hyperactive and lost so much weight but after DGD she went totally the other way. There is a huge scale of how bad you are and at the time there was no referral unless you were 9 - very low. She was on the same dose of Levothyroxine for the twenty years and then had a hysterectomy!! This has caused no end of problems - due to the severity of bleeding necessitating the hysterectomy she was given strong hormone injections monthly into her stomach area. She was told 2-3 would be all as by then she would have the operation. This 2-3 went on to be 6 which is the maximum in most cases and then was told another 4 months before op at least! By then we had decided enough was enough and between us raised the cash for her to go privately. All initially OK and then she was ill - no energy etc and facing at least 6 months to see and endocrinologist so this time we bit the bullet early and she saw a man privately. He said the TSH tests mean almost nothing as can vary significantly from hour to hour - he questioned her closely as to how she felt and then prescribed Oestrogen gel. This has improved things a bit but with all the variations of thyroxine dose she is no longer producing any thyroxine herself.
She has moved area of the country and now waiting to be transferred to a new endo person. She has done a great deal of research and the natural thyroxine is prescribed in USA and shows huge improvements in patients. They will not give it in UK for no other reason than cost - it is almost 40 times more expensive than the Levothyroxine which costs very little. The improvement in people who have been changed is dramatic and they report being back to their old self.
There are Facebook groups and web forums about the condition. The stories are all much the same with how people feel and treatment they receive. The latest instruction to GPs is to reduce everyone's dose as it can increase incidents of heart trouble etc.
it is a dreadful thing as to how it changes lives and makes people feel and little is done about it really. The Oestrogen hormone has a great effect on the thyroid. I am sorry so many of you are suffering from effects of it. OH has had thyroxine since having half his thyroid removed about ten years ago - he also suffers from extreme fatigue and has trouble getting out of bed.

Crossed posts anya

You're welcome Anya, I hope your DD gets the treatment she needs.
I take thyroxine too and am lucky it works for me. Having those symptoms must make life very miserable, especially when the condition could be more effectively treated.

Just read the article myself and it's all there just as my DD says. It's obvious she is one of the minority mentioned and what the NHS ought to be doing to help, but isn't

Thanks Janea I've copied the link to your article to my daughter.

I've only just discovered Malcolm Kendrick Gracesgran but I'm now following his blog - he has interesting ideas.

I think our posts crossed janeaninsworth as I didn't see the link. That is a very interesting article. I have pinned to my Pinterest board so I can refer to it.

My eldest DD (now 49) was born without a thyroid gland, and has obviously had to receive thyroxine since birth. Although this is monitored on a yearly basis, she does get really tired. Brain-fag, general weariness, etc. However, I have to say that she's never experienced any problems with any foods (or alcohol!)

Sorry GMC not GDC

One of them has certainly been hauled before the GDC for just that gracesgran. I think Malcom Kendrick refers to it in the article I posted a link to.
I think the natural thyroxine is derived from pigs, which may present problems of sensitivity reactions and may be why the NHS doesn't approve it, but don't quote me on that.

I have read something about the real, as opposed to chemical, thyroxine Terribull. I think it is sometimes called desiccated natural thyroxine or something close to that. I am not sure many doctors would go outside the replacement chemical thyroxine that NICE approves though.

anya here is an article by Dr Malcolm Kendrick which might explain things.
drmalcolmkendrick.org/2015/05/01/treating-thyroid-patients-like-children/
Basically there are patients who are supplemented with T4 don't convert it to T3 which is what the body actually needs (or it may be the other way round, I can never remember)
Anyway, it is often difficult to get the right treatment as the article explains.

I was diagnosed with this condition mid 40s about fifteen or so years ago. I was completely unaware of it before and imagined it was the onset of the menopause. I can only describe how I felt then, so sluggish, moving was like wading through concrete, my dress sized increased from size 10 - 12 to size 14 -16, I have never got back to my ideal weight. I thought Thyroxine would be a silver bullet, in so much as I would have increased energy levels, but sadly that has never been the case. At present I take a daily dose of 125 mcg, I still feel tired pretty much most of the time and I have to force myself to the gym, not because I enjoy it, but because I feel I must make an effort to raise my energy levels, because when I don't I feel worse.

I read your comments with interest gracesgran, particularly about digestion, mine isn't that good either. Also what you had to say about 300 symptoms, I remember a practice nurse at my doctor's surgery also told me the same thing about the menopause. I had a late menopause and still have symptoms, I believe hypothyroidism can kick in around the same time with similar symptoms thus blurring the lines as to whether tiredness is due to one or the other.

I believe I read somewhere that what we should actually receive to make us feel better, is pig's throxine, rather than the synthetic thyroxine which is what is prescribed although that opinion is not generally endorsed by the medical profession. I'd give it a try, if it gave me some more energy, even if the side effects were snorting and a curly tail, small price to pay