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16 years with an under active thyroid,

9 replies

5babyangels · 07/03/2012 23:23

I was 16 when I finally got a diagnosis after being extremely Ill for several months. I'm now 32 and have had it as long as I haven't! It can make life quite debilitating at times and others I just march on regardless. I've had 5 children and my dose fluctuates and so do my bloods. Tsh has been as high as 80, when really bad. I know its important but I do occasionally forget to take my pills! But then memory is terrible anyway, a side effect! I just wish u could feel well, properly well. I know I need to go back to dr, but it's so boring, we never get it sorted! Currently memory is horrendous, joint pain crippling, really tired, eyebrows falling out, crying more often, irritable is an under statement, also headaches! Any suggestions for alternative treatment that might help me along? Or suggestions for managing it lung term? Should I ask for specialist referral?

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ScottOfTheArseAntics · 08/03/2012 09:09

Hi. You are right you need to go to the GP and get your thyroid function tested. That's the first step at least.

I am currently hyperthyroid, having a hemithyroidectomy in the next couple of weeks. I fully expect at some point in the future to go hypo and have been reading up on it. I get the impression that the NHS view on hypo is that it is easy to treat and can be managed by GPs rather than specialist endo's so you may have to push for a referral if you want one.

Other things to think about - if you haven't already - are the way you take and store your thyroxine (T4) tablets. I have an excellent book at home which has really helped me over the last year, The Thyroid Source Book by M. Sara Rosenthal. She is a thyroid cancer survivor and an academic. It is very practical and no nonsense, it deals with the myths and mumbo jumbo and has an excellent section on how to take thyroxine.

One interesting thing she says is that forgetting to regularly take T4 seems to be the most common reason for people to become hypothyroid while taking the same dosages that were previously enough to bring their TSH to a normal level.

She also recommends taking thyroxine first thing in the morning on an empty stomach as food in your stomach causes a slight decrease in the amount of T4 absorbed by the body. Soya, particularly in liquid form should be avoided for at least three hours after taking thyroxine as should hot liquids especially coffee.

I read elsewhere recently that taking thyroxine last thing at night is now being recommended, so that might be worth looking in to.

Other things that can slow absorption of thyroxine are taking iron and calcium supplements, antacids, some heart medications and lithium.

Any heat can quickly inactivate thyroxine tablets so they need to be kept in a cool dark place.

Sorry if you already know all this but I have met hypo people who have never heard this and certainly not from their GP.

You may also have another condition that is masked by the thryoid and you should ask your GP if anything else might be causing some of your symptoms.

As for alternative therapies, my personal view is keep active and take exercise when you can. Treat yourself with some massage, yoga or shiatsu, the sort of thing that needn't cost a lot of money and which has physical and emotional benefits. Maybe look at your diet, a low-GL diet can be a healthy.

Sorry for the long rambling post, particularly if you know it all already. I really hope you start to feel better soon.

5babyangels · 08/03/2012 21:37

Thankyou Smile some I knew and some I didn't or had forgotten! I have endo as well, so bleed heavily and am permanently aneamic! I suffer with low ferrarin, (iron store) which goes hand in hand with thyroid issues. Its a never ending circle. I take the thyroxine first thing before anything else then if I'm good and remember I take the iron tablets 2/3 hours later. But these are supposed to be taken before food! Tricky when you've had to wait for thyroxine to be absorbed. Iron can prevent thyroxine absorption! It's been a nightmare every time I've been pregnant. Last time the drs put fear of god in
Me and told me baby would have poor brain development. I have 5 children Inc a 5mo baby, who I'm still breast feeding. Think my body's just a bit knackered! Blush

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5babyangels · 08/03/2012 21:39

Will get that book, thankyou Smile

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LeBeauReve · 08/03/2012 21:45

5babyangels I am hypothyroid too, and just wondered, did you have any issues with getting/staying pregnant? I assume not as you are lucky enough to be the mummy of 5!
Also, you mention about your Dr saying your baby would have poor brain development, have you noticed any issues at all to do with your children's development? I have an 18 month old and so far seems as bright as anything, but it is something that worries me.

Sorry I don't have any help for you, just looking for advice too really! :-)

EliasMum · 08/03/2012 22:12

Hi 5babyangels. I've been taking thyroxine for the last 13 years but had symptoms of hypothyroidism for many years before that. I see a private endo now and take natural dessicated thyroxine as well as T3. I found T4 normally prescribed didn't help. Apparently lots of patients have this problem, due to poor conversion of the drug but because it is much cheaper the NHS continue to prescribe it. Has your doctor recently cut your dosage following a TSH test? You sound under prescribed. www.tpa-uk.org.uk give helpful advice to thyroid sufferers. Hope you feel better soon.

5babyangels · 08/03/2012 22:31

Lebeau none of my children have ever suffered from thyroid problems. Eldest 13. So far none have inherited it. I fought very hard to have a completely natural home birth with ds5 as I knew it would be the safest option being so quick. He's very bright energetic and had no trouble feeding. The consultant wanted me pinned down for the entire labour with feral heart monitor on babys head! To which I refused all further contact with the consultant! I know my body and I knew my children and there was no way anybody was going to put me or my baby through that. Apparently though Its standard procedure with thyroid suffers now.

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5babyangels · 08/03/2012 22:33

ELIAsmum i didn't know there was an alternative form of thyroxine. I will have to investigate further, thankyou. My levels have never been stable in 16 years!

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RockinD · 09/03/2012 12:33

I am currently taking liothyronine sodium, which your GP can prescribe, although he might have to go and look it up, because not many of them seem to have heard of it. This is the active hormone and for some people this works better, either on its own or in combination with thyroxine. I have been on this for 12 months, prescribed initially by an endo and it?s probably shifted 75% of my symptoms.

Also out there is natural dessicated thyroid, which worked brilliantly for 100 years until someone invented synthetic thyroxine. This has all the thyroid hormones in it. It has not been approved, simply because it didn?t need to be, but GPs can only prescribe if they are prepared to take the responsibility themselves. That can be tricky to get hold of, but the people at Thyroid Patient Advocacy know all about it.

This condition is so badly treated in the NHS, so you owe it to yourself to learn as much as you can about it.

D

5babyangels · 11/03/2012 09:59

I will be off to the dr as soon as I get a quiet patch. I have read up about it over the years and asked the gp so many times about alternative medication and haven't got anywhere. I expect it all comes down to cost. I've been very poorly with it over the years esp last pregnancy. It was quite frightening.

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