Hypothyroidism

This is something that is just beginning to happen for me, well, the investigations into it at any rate.
I can empathise with the exhaustion. My GP has said that I need a blood test to ascertain how much T4 there is in my blood which isn't measured in an ordinary thyroid blood test.
Perhaps this is worth mentioning to your GP?

I agree with poster above. She needs to demand, is that possible, that T4 blood test. Many doctors don't believe in it, mine doesn't unfortunately.

If she hasn't seen one already I would ask the GP for a referral to an endocrinologist.

Thanks for above. I need to find out more information from DD about these tests and who she sees apart from her GP.

Please keep them coming.

I have recently been diagnosed as hypothyroid and can see it is one of those illnesses where there are battles to be fought. I am very lucky though and as someone who is retired, I can manage my energy - or rather lack of it - a lot better than someone who is working.

This article is a little out of the NHS norm but gives a list of 300 symptoms of hypothyroidism. It may seem a little extreme but what it brought home to me was that, even though I have a great doctor, I have never been asked about my symptoms. My levels were picked up because they/I thought I might be suffering from depression. Another doctor, not my normal one, said "we'll do blood tests just to exclude anything else but I don't expect anything". As it turned out the unexpected showed up.

If you are thought to have something like depression there is no blood test so they ask you a lot of questions and then treat you according to your symptoms. With conditions such as this they take the "approved" blood tests - not all of them and judge by a scale which, I believe, can vary from country to country.

As I say, I am improving. I do not feel exhausted all the time. I do feel tired most of the time and exhausted some of the time. The brain fog associated with this condition is much better so I no longer feel that a) I am already following in my mother's footsteps with Alzheimer's and b) am not fit to drive.

My digestion is still a problem but water is my friend. It is likely that a lack of natural thyroxin is simply making digestion very poor or, in some cases on some days, impossible.

My voice is more my own and swallowing is improved although I can still have problems.

I won't go on but, what I wanted to point out is that, according to the tests I am at the lower, less worrying end of the scale and I still battle with this - particularly the tiredness. It becomes impossible to fight and I must sleep to recover.

Could I suggest that your daughter looks at the list of symptoms and writes out one of her own, picking out those that affect her, with a comment about the severity she is dealing with. If she takes this with her to the doctors they may then look further at he meds. I do hope so. She has my best wishes as this is a long way from just feeling tired

Anya, it sounds awful, sorry I can't help. I had blood tests done a few months ago and the GP wants me to have another one done next week for an under active thyroid.Thanks GracesGran for typing some of the symptoms I have some probs with digestion so will drink more water, and the swallowing thing too just thought it might be one of those things about getting older.I will look up list of symptoms now.

Thank you for all your helpful replies.

My DD has managed the condition for over 5 years now and I do think as she is getting older it is getting harder. She has been to her GP on several occasions but because her blood levels are deemed 'normal" he just doesn't 'get it'. As Gracesgran put it 'this is a long way from just feeling tired'.

I've texted her and no, she hasn't been tested for T4 bloods, just TSH.

However I think I've persuaded her to go back to the GP and ask for a referral to an endocrinologist.

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

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 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.

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.

Sorry GMC not GDC

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!)

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.

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

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

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

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.

Crossed posts anya

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.

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.

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).

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.

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