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hypothyroidism - very worried

(42 Posts)

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

Very very early days for you and it can take a really long time to level off

Please do also bare in mind that lots of people do nt tolerate levothyroxine well and will never be fully well on it, so do look into naturally desiccated thyroid such as armour.
You will most likely have to go private should you wish to do this

Also learn as mich as you can. Thyroid care in this coutry can be pretty abysmal and it Helps massively if you know what you are talking about

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.

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

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

delasi Thu 17-Oct-13 14:01:58

amanda Sorry to hear the responses you've been getting sad thanks I don't know about any possible right to referral, however you always have the right to a second opinion (or more! possibly).

If your current doctors are not providing you with the help you need, is it possible to switch to a different GP/surgery? It's not always easy to find a good doctor in this regard, but the NHS website has a review section (granted, more people likely to complain than compliment), and I found a great GP through that, always listened to my thyroid issues, ran comprehensive tests without question when I started showing other symptoms.

My current GP is one I found through word of mouth, having moved away from where the first GP was, and again he is great, listens, treats my symptoms and not just the levels. However, none of the other doctors in the surgery are good in this regard - nice enough, but they look at my results and say, "You're fine, probably stressed". Whereas he goes through my lifestyle, exercise, diet, other conditions, runs other tests and so on and as a result I'm in much better control of my hypothyroidism.

I also find it helps to go armed with your own ideas about your condition - I used to worry that the doctor might think I had been overthinking/over-researching, but that has long gone! I go in, present all of my symptoms, await their response, and if it's something less helpful like, "Well, probably stress/imagining it" I will say, "Actually, could it be [insert problem here]?". I had to do this recently as my regular GP is on leave, the doctor I saw started down the line of, "Are you stressed?" but eventually agreed to check my physical symptoms (because they're physical! Not made up!) and I've since been sent for a number of tests because things are pointing to an actual problem.

I tend to just sit there and say repeatedly, "But I really think I should get x tested" until they agree grin blush

delasi Thu 17-Oct-13 14:03:17

PS every time I've felt like something was different, something has been different, and I've needed further tests and/or some form of treatment/management.

yeghoulsandlittledevils Thu 17-Oct-13 15:10:29

Amanda sorry about my last post. It wasn't aimed at you, I do hope you understand that!

I don't know about the gastro pain - I get constipation and diarrhoea related to Hashimotos, and terrible period pain (probably because of related anaemia) other than that, I don't get a lot of gastric trouble myself.

As delasi says, keep going back to the GP and try to see what information you can yourself to point your GP in the right direction.

digerd Thu 17-Oct-13 19:07:39

I did have an overactive Thyroid gland in 20s and it was horrendous as wasn't diagnosed for a long time. Gp said it was nerves.
Yes I did lose weight, but I felt as if I had permanent PMT 100 times magnified. A pulse rate of 160 just sitting still and was a nervous wreck. Paranoid, and thought I was going mad. Very irritable all the time. Later, my feet,ankles and whole legs swelled up to massive proportions later in the day.
Eventually I was so weak and couldn't get up the stairs without taking 15 seconds to get my breath back after each one, my eyes bulged and my Thyroid swelled up. My body wasn't absorbing Vit C due to the rapid rate of metabolism and got scurvy in the gums.

Not worth attempting to try and take it just to lose weight.
Decades on I have been diagnosed with a heart problem , most likely caused by the Hyperthyroidism in my 20s.

yeghoulsandlittledevils Thu 17-Oct-13 19:16:52

digerd That's so bad, words fail me. Feel so angry on your behalf.

My best friend at school had hyperactive thyroid, terrible periods, (seriously) low weight, etc. She didn't find out it was her thyroid until much later, but not until SS had 'investigated' to see she was being fed properly. After that the school accused her of making herself ill. angry

awaynboilyurheid Sat 19-Oct-13 10:12:02

Newly diagnosed here too its a complicated condition so I am still getting my head around it all too, there is lots of info online but everyone is an individual so one dose type of medication will not suit everyone.
I have had to stop all activities, like you was busy active person and am struggling to keep going at work at the moment I am waiting to see another specialist, just wanted to send hugs and say you are not alone its incredibly frustrating to have no energy when everyone looks at you and thinks your fine, but we have to keep on pushing to get the right medication to get our lives back x

RubySparks Sat 19-Oct-13 10:25:13

Another one with hypothyroid although actually was diagnosed with coeliac disease first. Was on 50mg for ages and still felt very unwell, fought to get an increase which took months and then they doubled it to 100! Felt better but then worse and had to then struggle to get it reduced, now on 75 which seems right for me as feeling much better now. Docs rely on blood results not on how you tell them you feel unfortunately.

All I can say is persevere! I felt really really dreadful for quite a long time and as others say had to give up things I enjoyed like exercise and socialising. Docs even thought I had me or cfs but I felt that it was more likely to be related to the 3 auto immune diseases I have! Other one is early menopause which can also be autoimmune so I'm also on HRT.

I really hope you get the help you need soon but it can take time to recover and giving yourself time to rest is good though I understand how frustrating that is when there is so much to do, have a look at 'pacing' which is advice for living with cfs but also applies to thyroid problems which are not optimally treated,in my experience. It helped me to cope but what really helped was the right treatment and it is not in your head - I was having massive anxiety problems before levothyroxine reduced to 75 and anxiety is a definite symptom of over medication but docs wanted me to do cbt and take beta blockers.... Hope you feel better soon.

yeghoulsandlittledevils Sat 19-Oct-13 10:31:04

away (love the nn) am glad to see another person with diagnosis and treatment, too many people are made to put up with the symptoms. It is an individual thing, you're right, despite it affecting so many of us it can have a rather isolating effect. I had an active job which I had to give up (have another part time job/business now). It is good to have those hours in the day to rest when I need to.

yeghoulsandlittledevils Sat 19-Oct-13 10:45:45

X posted with you, Ruby. I had a similar experience with levothyroxine levels. I am trying out 50 microg and have some 25 micrograms if I feel the need to raise or lower the dose. For now though, it is nice to get used to the same daily dose. I still don't feel quite right, some days terrible and my tests showed a predispisition to other auto immune diseases, and beginnings of arthritis. I could probablt get a referral to an endocrinologist from the Hashimotos test, but is that going to help with finding out about any other auti immne problems?

digerd Sat 19-Oct-13 21:10:43

yeg. Thanks for your sympathy. Some of my family members thought I wasn't eating, but I didn't stop eating.
It was a long time ago and am now slightly underactive but did not notice any symptoms other than the usual ageing ones. Gp put everything down to my age. 50 mcs of Thyroxine I take and due to the heart problem GP will not increase it.
Rather be slightly under than over as highly strung/anxious by nature.
I have general old age- arthritis, at least that is what the GP thinks is causing it.
Hope you soon feel much betterflowers

awaynboilyurheid Sat 19-Oct-13 23:22:08

yeg yes I have diagnosis and treatment now on 75 levothyroxine and I am better but still not well,some days terrible too just like you said, , was on 100 but it has been reduced still felt tired on 100 and still feel tired exhausted on 75 going back to specialist hopefully soon, today feeling very wiped out , I like so many others put up with being told I had normal thyroid blood test until I saw specialist who tested me for antibodies and found I had auto immune thyroiditis it has taken a while, there is a lot of info on internet but its good to connect with people who just know what you are going through, hope amanda, yourself and the rest of us can get the proper help we need x

yeghoulsandlittledevils Sun 20-Oct-13 08:54:03

away thanks for replying. Did your specialist prescribe thyroxine when you had a normal TSH test result where the GP would not?

There is tons of information on the internet, a lot of it is useful but a lot of it is conflicting advice.

At the rate we are going, and the number of people affected, we could all have our own MN thyroid ongoing thread.

awaynboilyurheid Sun 20-Oct-13 15:07:05

yeg dont want to hijack Amanda's thread! but this info may help her in some way Gp kept saying it was Chronic fatigue as blood tests "normal" so asked for referral the specialist saw me listened for 5 mins, then asked for antibody test, which was positive and with other signs TSH borderline high and T4 and T3 levels consistently low diagnosed autoimmune thyroid disease but I had to go private to see him!! NHS specialist refused to see me even though GP sent a letter, she showed me the letter back from them which said there was nothing wrong with my blood tests refused to see me. Thankfully had husbands private care which allows me some treatment but not a lot, thats how I got the diagnosis and treatment if left to NHS I would be even more ill and clueless as to why. A mumsnet ongoing thread would be a great idea, like you say so much info but when GPs don't do correct blood test or know about new treatments its an uphill battle It was recently debated in Scottish parliment about bad treatment three brave woman are campaigning for better care you could google as I dont have links I am currently trying to see another specialist due to ongoing thyroid problems exhaustion being main one but it all takes so much time and we all struggle on. Thanks Amanda for starting this thread x

GhouldenGreen Sun 20-Oct-13 15:49:49

Signing in here - unfortunately - I started levo at the end of March (tsh 11) and although I have felt a bit better with each increase of levo, 3 weeks ago I went up to 100mcg and I think I am going backwards now sad. I feel chronically tired, achy and low. Last tsh was 2.9 so the next tsh test due in 3 weeks will almost certainly come back as under 2 and therefore 'in range'. I will need to ask for a referral then I think - as lovely as my GP is, I don't think this treatment is helping me at the moment.

awaynboilyurheid Sun 20-Oct-13 16:13:29

Yes Ghoulden just because you are in range doesnt mean you cant feel terrible I say to my Gp yes I'm better but I'm not well and thats how I feel I wonder if something stops us absorbing it have read a bit about none dessicated thyroxin but tried to speak to GP she said she had never heard of it

yeghoulsandlittledevils Sun 20-Oct-13 16:26:37

All posters on this thread, please come and be a founder contributers! Free flowers to everyone who posts on the first page! grin over here. GhouldenGreen please come and join the new thread. That happened to me when I went up to 100. I had a full thyroid blood screen which showed the thyroxine had made me hyperthyroid, so have stepped it town to 75/100, then 75/50 and now 50/25 until it stabilises. I probably rushed at it and pushed to get it stepped up too quickly in my case, but I don't know for sure.

Away yes, I agree, I don't want to hijack Amanda's thread either. Let's keep this thread for Amanda's news.

When I first got diagnosed and got my results of (slightly) low thyroid function, I did a search on MN and only found a thread about someone's sister trying to lose weight using thyroixine. (I hope that makes some sense of my other post on this thread) I know there must be a lot of other people reading for whom thyroid function affects everyday life, or who think they might have a related problem and don't know whether to go to the GP, or what to say.

yeghoulsandlittledevils Sun 20-Oct-13 16:28:12

Ah, that should be free flowers for new posters on the new thread I've started a new thread

over here.
over here.

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