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hypothyroidism - very worried

(42 Posts)
amandaburfoot Tue 15-Oct-13 13:33:43

Good afternoon everyone, my name is Amanda. I have only been diagnosed with hypothyroidism for 4months and I have got worse.
I have a tsh of 15 but was 7 3 months ago!
I have no energy and where I was losing weight steadily I am now getting bigger, the doc said with a tsh that high I will not lose weight.
my body hurts it's the only way I can describe it, I am soon to be tested for lupus and ME, I'm so down I've gone from a 33 year old woman with bags of energy going to the gym four times a week, walking to the school to someone who struggles walking around town for 20 mins!
Is there anyone in my situation? apologies for my long winded post! smile smile

Pobblewhohasnotoes Tue 15-Oct-13 16:36:01

Are you on medication and how much? Your tsh is still way too high. What is your ft4 and t3? Do you see an endocrinologist?

I have hypothyroidism too btw.

Sleeptimenow Tue 15-Oct-13 17:03:36

I have hypothyroidism too, for me it took quite a while to get the medication right and start feeling vaguely normal again, if the GP is struggling I agree with pobble and you need an endrocrinologist.

From personal experience having had M.E when I was younger for several years, hypothyroidism can make it all much more difficult to cope with and to treat so it's something that needs sorting pronto. Plus it makes your moods really plummet and that in itself makes you feel physically worse.

It does get better, I was very ill for several years with a few health issues but once I got the right help and treatment I did get better. I know this doesn't help you much as while you're stuck in it it's bloody awful, but it does sound like you've been referred to the right people to diagnose and treat you, which sometimes is half the battle in the nhs.

mercibucket Tue 15-Oct-13 20:22:01

so your tsh is going up not down?
and you were diagnosed 3 months ago?
that really early days yet dont worry, but you can go straight onto, say 150mcg levo, instead of going up gradually
what level meds are you on?

very importantly, what are your ferritin, b12 and vit d levels?

Kormachameleon Tue 15-Oct-13 20:33:06

Message withdrawn at poster's request.

PoppyAmex Tue 15-Oct-13 21:11:36

I agree with merci, check your iron/b12 and vitamin d levels.

I'd also push for a referral to an Endocrinologist.

amandaburfoot Wed 16-Oct-13 00:18:42

thank you for your helpful comments, I am now on 100mcg levothyroxine the doctor only increased it from 50 last week.
I am currently feeling horrendous thank goodness my 16 yr old can take my son age 6 to school for me tomorrow!
I asked my doctor if there is anything as well as the levothyroxine I could take but he said the meds are the only thing that will work.
what are my chances of getting a referral to an endocrinologist? I live in Kent. for years I've suffered with stomach problems which have been undiagnosed, could this all be related?
I just want to be happy, healthy, energetic Amanda again! sad

delasi Wed 16-Oct-13 00:27:59

I echo the above advice, with emphasis on pushing to see an endo asap. I struggle when my TSH goes over 3, I can't imagine being 15 confused

Separately, you can try some other things to help you along. Google Mary Shomon - she has thyroid info, including stuff on working out how things (like weight loss) go a bit different when underactive.

Also Google goitregenic foods or hypothyroidism diet - there are some foods that can exacerbate hypothyroidism or make med absorption more difficult. Certain vitamins (iron, I think also calcium and D) inhibit absorption as well, as does caffeine, when taken at the same time as medication. I have found, through online resources, talking to my GP, and with a bit of trial and error, that soy-based foods really mess me up - a little bit of soy in the basic composition of something is fine, but something like soy milk or a soy-based dessert completely drains me. A diet high in white meat and fish, slow energy release foods (eg sweet potatoes, oats), and fruit and veg, lower dairy consumption, with plenty of water and limited caffeine, helps to maintain my energy levels. This was advised by my GP after going through my usual diet with him, and not only does it help with energy but also I started to lose weight more easily - I ate healthily before, but differently - so it might be helpful to get some advice or guidance on how you can work with your diet to improve your symptoms. This kind of diet also improves absorption of other vitamins you may be taking - I have vitamin D, folic acid, and vitamin C. B12 hasn't been an issue for me thus far, I occasionally get anaemic, I get both checked regularly alongside my other bloods.

Make sure you take your meds around the same time every day, with just water, and leave at least 30-60mins before eating or drinking anything else - easiest to take them first thing and then wait a bit for breakfast.

itshotintexas Wed 16-Oct-13 02:15:00

Hi Amanda, it sounds horrendous for you. First of all, if you have the energy, have a look at This site has been brilliant for me but I also have a very fab family practictioner too who is willing to listen and pretty much prescribe me exactly what I want. I was taking levo, increasing my dose and my tsh was increasing. Some people cannot convert T4 to T3 which results in increasing TSH. And if you read above book,website, you will see why TSH is actually no measure of thyroid function at all, its actually an indication of how your pituitary gland works.

you need free T3, free T4 testing, plus the levels the others recommended, as these directly affect how your thyroid works and how you uptake the medication. I take natural thyroid, so T3 and T4, and it also gives you T1, T2 as well which is actually what your thyroid produces when it is working properly. straight T4 (levo) does not work for me at all. When you feel crap, it is all very overwhelming though.

I hope you can make some progress and feel better soon.

mercibucket Wed 16-Oct-13 09:09:48

you feel crap because you are under medicated

50mcg is a very small dose, and the increase to 100 has only just happened

my tsh was around 15 and i felt like death til i was on 100mcg and had sorted out my other deficiencies

dont worry yet

but . . . .

you need to get all other possible deficiencies checked. most hypo people will have at least one. get that done asap by the gp: ferritin, b12, folates, vit d.

then tell us your levels. you will feel ill if, for example, ferritin is above 'deficient' but below say 90. your gp will say levels are 'normal'. same for the other results

equally, you need patience. how long did you feel unwell before diagnosis? rough guide, it could take the same length of time to feel 100 percent better

you might need tsh under 1 or suppressed before feeling better. font be fobbed off with 4.5 and 'normal'

mercibucket Wed 16-Oct-13 09:13:25

sorry, another post

also dont worry yet that you need to try a t3 based med. give the levo time first and sort out the other deficiencies you will have

i now go to the gym again and life is pretty normal. it took a year if not more, but i was 90 percent better after 6 months

TwoStepsBeyond Wed 16-Oct-13 09:42:21

Can you even get T3 or natural thyroid in the UK? And if so, how?

yeghoulsandlittledevils Wed 16-Oct-13 09:56:14

Am also hypothyroid and still having dose adjusted. I have found that each change of dose has quite a big effect for a few days, and have been stepping up by 25microgms. A step up by 50microgms would make you feel worse for a while. Your GP should give you a full thyroid screen when the current dose has time to level out.

As for weight, I have a choice atm; I can eat 3 small meals a day and pile on the weight or I can starve myself and be just a bit overweight, exercising every day.

You may find your height and normal body frame affect how much thyroxine you need more than how low hypothyroid you are.

Hypothyroidism isn't as life threatening as hyperthyroidism, so doctors tend to prefer to under prescribe rather than risk a patient having a heart attack when hyperthyroid.

yeghoulsandlittledevils Wed 16-Oct-13 11:47:16

I can also add that, taking a higher dose than you need of thyroxine to correct tsh/t4 level does not help you lose more weight, ime it can have the opposite effect!

blondieminx Wed 16-Oct-13 12:01:08

Another hypothyroid mum signing in!

Amanda, the Dr has to start you off on 50mcg and then steadily increase the dose while your body gets used to taking the replacement hormones. As already mentioned upthread, giving a high dose straight off can result in heart problems (I had palpitations when I started taking it but these settled within a few weeks).

You should be having blood tests every 4-6 weeks and adjusting dosage from there. Your GP should be aiming for a TSH of under 2.0 if you are of childbearing age, according to the NHS CKS guidance.

Try to take your meds first thing in the morning and then also take multivitamin and minerals with your evening meal (iron etc can hinder absorption of the meds, and tea hinders absorption of iron so I have to take mine at the end of the day once I've had enough cuppas!).

If Levo doesn't work for you once they've got your levels down then push for a referral to an endo smile

mummytime Wed 16-Oct-13 12:20:15

Hi! I've only just been diagnosed, but actually feel considerably better after only a few days. However, I do realise I may well feel worse after a while.

OP could you have Coeliac? I read somewhere it can co-exist with Hypothyroidism, and if you have had stomach issues, it could be a problem.

I would also echo reading up to make sure you take your medicine at the right time and away from foods that can interfere. I am also taking Iron which makes it a bit complex.

delasi Wed 16-Oct-13 12:58:15

mummytime ditto to your point, there are actually quite a number of conditions that seem to coexist/be more likely with hypothyroidism sad I'm being tested for Coeliac this week in fact. I've also had other medical issues brought on or exacerbated by hypothyroidism. OP it can take a while to get your head around it all but it does get simpler smile

PoshPenny Wed 16-Oct-13 12:58:21

There is a us website which has a lot of articles on it that you might find interesting and give you some food for thought (as it were)

Pobblewhohasnotoes Wed 16-Oct-13 14:42:28

Ask your GP for a referral. If they say no, ask for a good reason why.

yeghoulsandlittledevils Wed 16-Oct-13 21:07:19

I thought it was that people with one auto immune disease (like hashimotos, the most common cause of hypothyroidism) can often be predisposed to having/developing others too?

AngelDog Wed 16-Oct-13 21:12:56

Definitely look at

Standard meds often aren't any good.

itshotintexas Thu 17-Oct-13 00:03:40

agree, angeldog. the link with coeliac and hypothyroid and a host of other diseases is that they are auto immune and often linked. I have coeliac, both my boys are coeliac, i am hypothyroid. DS1 also has other autoimmune allergy stuff. please, please do the research and fight your corner. Just upping levo is not always the answer.

digerd Thu 17-Oct-13 07:21:50

Years ago, a naive GP gave a women very high dose of Thyroxine to lose weight. It worked, but when she came off it, the Thyroid became Hyper/ overative and she became seriously ill.

yeghoulsandlittledevils Thu 17-Oct-13 08:33:15

Yes, I was amazed to see there are people who would consider thyroxine as a way to lose weight! To anyone with a healthy thyroid thinking of taking thyroxine to lose weight...Taking thyroxine to try to lose weight is a fool's gambit. (In case anyone is thinking of trying that). It won't actually work and your thyroid will be permanently affected (it should never be used on a healthy thyroid). The stakes are your thyroid never working properly again.A knackered thyroid causes several other nasty symptoms besides just weight gain, when hypo (depression, low circulation, feeling cold, changes in blood pressure, hair loss, did I mention the depression, oh and problems with memory & slowed down thinking and movemets.) When hyperthyroid, as will happen when taking thyroxine with a healthy, functioning thyroid, the stakes rise as you put your life on the line. (Not to mention you then clog up the NHS with your self-inflicted injuries, warping the statistics making it even harder for actual ILl people to get treated. angry

amandaburfoot Thu 17-Oct-13 12:28:30

thank you for all the advice, so if I go to my gp do I have the right to be referred to an endocrinologist?
I get horrendous epigastric pain for which I take a combo of naproxen, paracetamol and codeine.
I've seen a gastrointestinal doctor and they cannot find out what is wrong, this has been ongoing for years and usually ends up in hospitalisation a few times a year.
one doctor at Maidstone hospital told me it's in my head which upset me greatly as you can imagine, wondering now if it is all related to the thyroid problem.confused

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