Thyroid UK

Feeling Hopeless and no idea where to turn

I was diagnosed 15 years ago with hypothyroidism after 2 years of being told I was depressed but knowing this wasn’t the case. GP says my levels are fine but I never feel better. Constant fatigue, brain fog, aching joints lack of focus and inability to loose weight despite good diet and exercise. 10 weekly B12 injections, 225mcg thyroxine daily, propranolol twice daily for sweats, mebeverine and peppermint oil caps 3 x daily for IBS, and 40 mg fluoxetine for depression yet still feel awful. I can’t get my head round the masses of info on the internet and frankly don’t know where to turn. Feels like I just need to accept I will never see the real me again. How does everyone else cope? 2 referrals to endo but that was a waste of time I was told my symptoms are a bit of a red herring!

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Lots of us feel that we get nowhere fast with GPs and endos. You are not alone and yes the system is rather rubbish as patient blaming is the thing when we present symptoms that they think they can do nothing about and are certainly not thyroid. Our systems are all interelated so sorting the gut, diet, thyroid, supplements etc can have profound effects on us.

Do you know your latest thyroid blood test results? We can offer specific advice with more info.

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Endos are a bit of a red herring, in my opinion, you go to see them, confident they're the answer to all your problems, and they just make you worse!

So, which way to turn? The first step to getting well is to get hold of your blood test results, as many as you can, from as far back as you can, and learn to understand them. Not difficult. We can help you. And you'll soon get the hang of it and read them better than your doctors! You need the numbers! Results and ranges. If you live in the UK, you are entitled to a print out under the 1998 Data Protection Act, so don't be fobbed off! Although your doctor can make a small charge for printing ink and paper.

Then, you post them on here, and let's see exactly what was tested and exactly what the results were. Then we'll be able to see what your next step should be.

Your endo probably said that your symptoms were a bit of a red herring because he doesn't understand thyroid very well, and has no idea what the symptoms are supposed to be! Either that or he doesn't know what a red herring is! :)

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It's going to take time and effort to unravel your health and start to treat thyroid dysfunction correctly but it can be done. Like many of us here, we have been offered numerous drugs to 'fix' various dysfunctions that all in fact stem from the hormone imbalance. Many of these drugs have side effects and don't solve the problems in any case so we just don't get better.

Like many of us, you'll have to slowly unravel all the various facets of thyroid disease to recover. If you post your latest thyroid test results and any vitamin levels people will help you understand them.

225mcg of levothyroxine is quite a high dose and it's very likelly you have absorption problems which are common with hypothyroidism due to gut dysfunction. Do you know if you have thyroid antibodies? Have you had them tested?

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If you can afford to, go and see a well qualified nutritionist. This can make the world of difference. You will most probably discover that you should not eat wheat, gluten or dairy. It's a real pain but you will feel better. You may also have low stomach acid and you can test yourself for this by doing 'The Burp Test.' (instructions on the internet.) I changed my life by doing these things. Good luck.

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You. Ould even be overmedivatex which makes you feel pretty rough as well so tell us as much as you can to help get to the bottom of it and done walker results as well if you have any. Not just thyroid readings but any other be it vitamins of any othe panels. Sometimes we may have to step back and look at things again.

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For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Get copies of recent blood test results and ranges. You are entitled to copies by law

You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

If not been tested for some while, See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Come back with new post once you have some results

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Thank you all for your replies! I am limited as to what my GP will check bloods for some tests they won’t do more than annually xmas gift to myself will be bloods from medichecks! Will repost once u have the results x

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I remember the sweats and the IBS it was awful both of these symptoms are sorted for me now, i still get muscle weakness, joint pain and fatigue, so i am a work in progress. I am not yet back to full health but i am a million times better than i was. My dr and endo were worse than useless. I agree with all the above but also want to add that propranolol is unlikely to help your sweats as that will be hormonal and anxiety both hypo symptoms. However 2 of the drugs listed as having interactions with propranolol are levothyroxine and fluoxetine, did your dr mention this?? also a common side effect is stomach pain!! my dr pumped me full of drugs and i just got worse. Are you depressed or just fed up feeling ill, once you get your tests done and start getting better you may find you dont need fluoxetine, propranolol and mebeverine.

Start at the beginning and know that you are going to start feeling a lot better, no quick fixes with hypo but everyone here has been through it. Without support from these groups i would still be bed bound, in chronic pain unable to function, i was nearly in a coma.

I hope 2018 is the year you start feeling much better xx

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Thank you so much for this to be fair don’t think the propranolol is doing anything for the sweats probably be just as well stopping it? I am finding this group very informative and supportive fingers crossed for a better 2018!xx

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it may also be affecting you levo as you are on a high dose with no improvement. There are lots of things that hinder the effectiveness of levo and you will learn these as you go along. If you think you can do without the propranolol it is worth trying. Unfortunately most drs are entrenched in the thinking that more drugs=better health, when in fact the opposite is true.

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