What to do?

Hi

I have hypothyroidism and take 100mcg thyroxine. I am told that my blood results are bang on, but I'm fatigued, depressed, and my muscles hurt. I am overweight even though I stick to around 1000 calories and am reasonably active.

I'm fed up watching life tick away and feeling dreadful. GP no help, wants me to take anti depressants, but I don't find they help and I am convinced this is a physical issue not a mental health one. Sure, there are mental health results from it, but I want to address the root cause rather than fiddling with the symptoms. Trouble is, GPs just want to get you out of the office and that means you have to go back many times and it's just gone on for far too long now.

I suspect something autoimmune, as I also have vitiligo, suspect Hashi's, and have leaky gut symptoms. Endocrinologist was disinterested, speculated that I have fibromyalgia and told me to trundle back to my GP rather than doing anything that might help. I feel like I'm not getting anywhere.

Does anyone have any thoughts on what to do next? I would welcome advice.

16 Replies

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  • Ellie1965 No-one can comment really unless you have results for your thyroid tests.

    If you don't already have them, ask your GP (or endo) for a print out of your test results. You are legally entitled to them under the Data Protection Act 1998 and your surgery can't refuse although they can make a small charge for printing. What you really need are:

    TSH

    FT4

    FT3

    TPO antibodies

    TG antibodies (but rarely done on NHS)

    When you have them, post in a new thread, include the reference ranges, and members will comment.

    It would also be useful to have:

    Vit D

    B12

    Ferritin

    Folate

    as all these vitamins and minerals need to be at optimal levels (not just in range) for thyroid hormone to work properly.

    I imagine you are under medicated but post your results and members will help.

  • Did you have your blood test taken at the very earliest and fasting. Did you leave about 24 hours between your dose of levo and the test.?

    Have you had B12, Vit D, iron, ferritin and folate checked, plus thyroid antibodies. Never mind if he's not keen on doing these, you have to have them at an optimum level to feel well. Your 1,000 calories a day are too low as you have to get your thyroid hormones at an optimum level first and 100mcg might not be it. Many members gain weight when not on sufficient thyroid hormones either as everything slows down, i.e. temp, pulse, digestion etc.

    Get a print-out from the surgery of your results and we are entitled to all our blood tests by law. Some charge a little for the paper/ink.

    Your symptoms above do sound like clinical symptoms of hypo. I bet your doctor is happy if your results are in the 'middle' of the range when TSH should be around 1 and the other towards the upper end.

  • Hi Shaws

    I wasn't aware that you're supposed to fast or that you're not meant to take the thyroxine dose before the test.

    I've gone ahead and ordered a private blood test which has been recommended on this site. I've included the test for antibodies.

    I'm so grateful for the advice - many thanks!

  • Its a relatively new method of testing as it has been found that not following the 'recommendation' skews the blood tests and may probably result in the hormones being adjusted unnecessarily so and make us more unwell :)

  • The Endo, he just gave the name Fibro as he was stuck for an answer. That's what happens, our symptoms get diagnosed but the patients is still undiagnosed. If that makes sense :)

    web.archive.org/web/2010103...

  • Just to add fibromyalgia is a diagnosis often used to tell patients to go away because the doctors don't know what is wrong with them. The other one used is Chronic Fatigue Syndrome but I think some doctors are getting wise saying patients have this as then they can be challenged.

    As the others have indicated it is very likely you are not only inadequately medicated on thyroxine but you are nutrient deficient.

    I suggest you make yourself aware of the information on the main website at thyroiduk.org.uk particularly the information under "About the thyroid" and "Getting a diagnosis and starting treatment"

    Then make sure you tell your GP when asking for the tests, that you have been in contact with thyroid UK which is a charity recommended by NHS Choices and mentioned in the NICE guidelines for those with thyroid conditions.

    If the GP is resistant to testing you for all these nutrients then you can at least try to get your vitamin D level tested. As if you are housebound/inside most of the time AND have any muscle/joint/bone pain then you need to clearly tell your doctor this. In addition you must add that you are aware that both the NICE guidelines AND the chief medical officers recommend you fall into one of the groups who should have their vitamin D level tested. If your GP tries to wiggle out of the vitamin D test by claiming it is fibromyalgia state that a differential diagnosis is vitamin D deficiency and so you need to be tested to discount it.

    Finally I notice you are calorie counting. This means the diet you are on is clearly not sufficient to fill you up. I suggest you research the high fat low carb diet approach and how it can help in general and with heal leaky gut due to it forcing you to eat real food. There is now loads of information on this online but you can start by reading the blog of the nutritionist Dr Zoe Harcombe.

  • Thank you, everyone, for taking the trouble to reply. I feel quite ignorant to be honest and I'm finding your advice, to myself and others on this site, very helpful.

    You're right - I eat a very narrow and non-balanced range of foods because I also have gallbladder problems - some things trigger very painful and frightening attacks. I've learned to eat bland things that don't hurt.

    I will get hold of my blood test results and ask for your further advice, if I may.

  • When you post back make sure you add you have a gallbladder problem.

  • Ellie1965, it's not us that should feel we are quite ignorant, in fact it is upon those whom we rely on to make us well and to know the answers and only to find out when we're not impoving that we have to 'Do It Ourselves' :)

  • I have to admit that I don't really understand about TSH and T3 and T4 but I get the feeling that my GP doesn't really, either. I only know that I've wasted years feeling depressed and fat and I haven't got that many good years left, so I am determined to get answers now even if that means leaving the GP out of it! Thanks for your advice, it's very helpful :-)

  • We don't really have to understand about TSH, T3 and T4.

    First the TSH means 'thyroid stimulating hormone' and if our gland is failing the TSH from the Pituitary Gland pumps out the stimulating hormone to try to get some more thyroid hormones than its providing. T4 is the hormone from the thyroid gland as is T3 (T4 = thyroxine and T3 = liothyronine).

    When our gland has failed and we're finally diagnosed we are given levothyroxine (a synthetic T4). It then has to convert to T3 the only Active hormone required in all of our receptor cells, the heart and brain contain the most but we have billions of cells.

    That's the basic above and its a pity the doctors don't know that in order for us members to feel well we have to have a dose of replacement thyroid hormones that make us well, i.e. not to be kept somewhere in 'range' but sufficient hormones to make us feel well with a 'get up and go' :) If after a reasonable period on levothyroxine and it has been raised to a really good level but we still don't feel well, I feel it is reasonable to reduce levo and add some T3 at the very LEAST. They will not prescribe NDT which was the original thyroid hormone since 1892 and which we were given according to our clinical symptoms on a trial basis and if we improved (as the hormones were increased) we were hypo. Also NDT contained all of the hormones our healthy gland would have provided and there didn't appear to be CFS, Fibro.

    I wouldn't like to suggest to someone that they might have a problem with their appendix and then tell them how to proceed to try to rectify it but that's what we have to do if we have a dysfunction of our thyroid gland because many of us do not feel well on replacement levothyroxine alone and the doctors prescribe a selection of 'alternative medications' i.e. antidepressants, pain relief, sleeping pills, antacids and whatever else thrown into the mix and the poor patient only needs decent thyroid hormones which suits them at a level which helps them recover and relief of all symptoms.

    We are really a self-help group in a way and others who are fine on levo wont be looking for advice on this forum, they'll be getting on with their lives. Of course there are others still unwell as they don't have internet connection so may well have continuing illhealth as we'd never have doubted a doctors word in the past.

    Another problem is diagnosing by the TSH alone as sometimes it never rises high enough in the UK to be diagnosed and someone must have had a brainstorm in order to make it 10 for diagnosing hypo. Other countries diagnose around 3+ so in the UK there's far more suffering than is necessary and the fact is that there's far more women than men hypo.

  • Thanks Shaw, it's reassuring to know that there are other people who have had the same set of challenges and have managed to get informed and do something positive about it.

    I'm just hoping that by trying the recommendations on this site I can make me feel a bit better, and maybe one day in the not too far distant future I will wake up and feel optimistic and happy the way I used to. At the moment every day is a struggle with depression and I really need some hope that things will improve, something to fix my sights on!

  • This will cheer you up I think. :) :-

    healthunlocked.com/thyroidu...

  • Just for information:-

    web.archive.org/web/2010103...

  • That article describes me word for word, Shaws, even down to the traumatic events. I'm going to wait for the blood results so I know what I'm trying to fix and then I will be on a mission to get this sorted out!

  • 1000 calories seems to be a little in the low side. I myself have change my diet to include more good fat and lots of good healthy protein. Lots of vegetables and a gluten free diet. Now, my downfall might be too much fruit since I don't use any more processed foods or refined sugar product or even sugar in my coffee but I agree with bluebug, you might benefit from reviewing your diet.

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