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Hi

Since I was started on Thyroxin some 25 years ago my weight has increased by 5 stones. After a lifetime of various symptoms, being treated for IBS and progressive arthritis I was diagnosed with Coeliac Disease 9 years ago. T

Diet has eliminated many of the symptoms, but I was still getting lots of legs pains. My GP tested for vit D levels and they were non existent , so as my body doesn't absorb vit D I now have injections every 3 months.

Throughout this time I still feel tired and the weight gain is so depressing . Weight watchers etc don't work! I have a very healthy diet due to my eating restrictions, but still GP tells me it is my age . I now have a new GP and she has listened, as I have asked to be referred for a private appointment with an endocrinologist. She then admitted that the labs in the local hospital will only test T4 and nothing else, so the only way I will hopefully get some answers is via this new route. Each time my thyroxin has been increased my weight goes up. I'm not a medic, but I'm not stupid either and have been so frustrated not to be "heard".

Having just had my dose increased again, I don't feel any better, infact i feel as though I have muscle weakness, and my weight has gone up by 9 pounds in 3 weeks.

Reading through past posts has made me feel that it isn't all in my imagination and I hope that when I get my appointment he will "listen" and not be dismissive.

6 Replies

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  • Hi Lizzie. You're in the right place to gain the knowledge you need. Before you go to see the new endo, write a list of the questions you want to ask and the symptoms you want to raise, along with the tests you want doing. Then if you get flustered or carried away by the conversation you can refer to it to make sure you've raised all the issues you need. It's what I do now.

    Make sure you are tested for thyroid antibodies (possibly you have something auto immune going on if you have arthritis) as well as Ft3 and FT4, along with iron, folate, B12 and ferritin if they haven't already been done.

    Good luck. You are at the start of your journey to improving - so keep reading and keep asking questions here if you need to.

  • Hi Lizzie - and WELCOME ! before we can help you with good advice we really need to know your most recent blood test results with their ranges.

    The most important tests are :- TSH FT4 FT3 Anti-TPO Anti-TG. T3 being the most active hormone and needed in each of the 10 trillion cells of your body...so if it is low then something starts to go wrong. A bit like having reduced power with the electricity - all the light bulbs are dulled :-)

    B12 - Ferritin - Folate - Ferritin - Iron and not VitD as it seems you must have had that test. Perhaps you have had the others - so am wondering what the results were.

    The most important thing to have done are the Anti-bodies - TPO and Tg. This would confirm Hashimotos - the auto-immune condition that over 90% of thyroid sufferers have. Myself included :-)

    Having had your dose increase without improvement may suggest you are not converting well - from the T4 into the T3.

    Like you I am not a medic - just a fellow sufferer - Hashimotos - Crohns - Fibro - late diagnosis at 59 so lots of damage in the body - B12 deficiency and the list goes on. Now feeling well after so much good advice from this forum and Dr P....

  • Thanks - I am having another test done in 2 weeks, but as I said the local hospital lab will only test T4, which is why I have insisted in seeing a consultant after all these years. My other bloods are checked annually at my Coeliac review . Levels of B12, iron and folate are always good.

    My new GP is only young and she is already frustrated with what she can an d can't do for patients. The local lab refuse to check my Vit D level a again as I am receiving treatment - despite both my current and last GP phoning up. My current GP has had major arguments with them regarding the thyroid function tests they carry out. So my only way forward is to take matters into my own hands. It's been a relief to find a forum where others are as frustrated as myself. I will post my progress when I have some news. Many thanks.

  • What is good in the eyes of your Doc - may not be optimal for good health and thyroid function. Best to obtain copies with ranges and post here in a new post. If you have gut issues the chances are you may have absorption problems. Docs are happy if you are just in range rather than at the TOP.

    Just a thought - it is a common and recurring problem here on the forum....

  • Before you fork out money that would probably have been better put down a drain, email louise,warvill@thyroiduk.org and ask for a list of sympathetic Endos/private doctors. We all have wasted money at some time or other. If you already have a 'name' ask Louise if she has information.

    You can also have private blood tests done

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

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

    When our TSH is kept 'within range' when on levothyroxine, we gain weight. This is a worldwide fact. To lose weight we need our metabolism raised, which is with an optimum of thyroid hormones, whether T4/

    T3, T3, Natural Dessicated Thyroid Hormones. This is a scientific paper your GP maybe interest in.

    Weight gain is one of the most common questions, either unexplained weight gain, which is due to being undiagnosed and is a clinical symptom, or not enough medication.

    web.archive.org/web/2010073...

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

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

    You couldn't lose weight at WW because your metabolism was too low in the first place, it only works if you have normal metabolism then, with exercise and diet weight can come off, slowly.

    We have to read and learn as much in order for us to get back to reasonable and painfree health.

    When you have a thyroid gland blood test, do NOT take medication on the morning (if you take meds at night miss this dose) and take after blood test. Also have it as early as possible.

  • Thanks for all of the info! So much to take in and investigate. I will email this lady as I haven't as yet been given the name of a consultant. To be fair my GP wanted to do some research so that I could be referred to someone that would actually help. If I have some names to give her it can only be another step forward.

    I didn't know about not taking the medication on the day of a blood test. Will make sure I follow that in 2 weeks time.

    The more I have recently been looking into things, the more I realise gps just don't have the knowledge to help. My knew GP admitted that.

    I recently found out that with coeliac disease your thyroid levels fluctuate - so all those years ago - pre diagnosis- I may not even have needed thyroxin at all. My new GP agreed. I'm not sure what effect this may have had .

    Many thanks again. I've got a lot of reading to do.

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