Life with Hashimotos

I was diagnosed with under active thyroid in June last year and went through three months of depression, weight gain, fatigue and parched skin and hair loss.

My doctor kept telling me that my test results were within range and I should be feeling a lot better. I had to beg her to refer me to an Endocrinologist which I had to pay for and he immediately diagnosed Hashimotos and increased my levothyroxine from 25 to 100mcg.

That was September last year but I am still suffering. I wake up in the morning with s puffy face and eyes, my throat is constricted and I find it hard to take my tablet. My skin feels tight and when I brush my hair it falls out and I have bald patches. I have now put on two stone and am very depressed and become quite angry very quickly.

There are tears, joint pain, and digestive problems but I have to keep going as my doctor says I am within range so should feel normal. Does anyone with Hashimotos feel normal?

I have tried diets but nothing seems to help and the weight won't shift, can anyond advise me how I can help myself?

12 Replies

  • Welcome to the forum, Saffiepurple.

    25mcg to 100mcg is quite an increase in one increment. Being quick to anger can be a sign of overmedication but your other symptoms sound like undermedication. It will help members to advise if you post your most recent thyroid results with the lab ref ranges (the figures in brackets after your results). Ask your GP receptionist or practice manager for a printout if you don't have them and post them in a new question.

    Hashimoto's is an autoimmune condition which is caused by your immune system attacking your thyroid gland causing it to fail. Autoimmune issues are often thought to start in the gut and it can be helpful to adopt a gluten-free diet to reduce attacks and reduce antibodies. G-F can be very helpful in managing digestive issues of bloating wind and constipation and have helped some members lose weight. It is important to drink plenty of water as dehydration makes constipation worse. 2-3,000mcg vitamin C has a loosening effect on the bowel.

    Hpothyroid patients commonly have low/deficient ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms so ask your GP to do blood tests.

  • Hi Saffie, you are going to be even angrier when you learn more about the treatment you aren't getting in the UK. I've read your story a hundred times on this forum. But your endo seems to recognize more about legitimate doses. Did you go back for another increase which it appears you need. One hundred mcgs. is still a fairly low dose.

    Have you looked at your lab tests. You are allowed to have them and we can look at the ranges and see if you are receiving enough and whether you are converting that T4 into the free T3 that is required. There is no reason for you to be in such a state and hopefully you can turn that around.

    You have to learn more about your condition and here is a start.

  • It is most frustrating to say the least when doctors pronounce 'normal' when you are anything but. What they say is all nonsense really and we eventually realise their knowledge of the dysfunction of our thyroid gland is zero/nil.

    Before we are ill we have no idea that most doctors appear to be the least suitable to enable us to get well. They diagnose the TSH only and pronounce us 'normal' and ignore completely our continuing clinical symptoms.

    Before the blood tests were introduced and the TSH in particular as the 'exquisite' test along with levothyroxine doctors had been trained as medical students with knowledge of all our clinical symptoms, took family or personal medical histories and gave us a trial of natural dessicated thyroid hormones.

    We have to read and learn and it is a great pity we have to suffer unnecessarily so, most times, due to ignorance by the medical profession on how to give us effective medication and to take note of our clinical symptoms. We are usually given medication when the symptom becomes troublesome or they ignore it altogether because they don't believe it's due to our thyroid hormones because we already taking medication and our TSH is 'normal'.

    Some links for you to peruse.

    Get a new blood test for your thyroid hormones and ask for a Full Thyroid Function Test (probably wont but ask anyway). TSH, T4, T3, Free T4, Free T3, Vitamin B12, Vitamin D, iron, ferritin and folate.

    Do not take levothyroxine on the morning of your blood test take it after and have the test as early as possible as that's when our TSH is highest. Ask for a copy of the blood test results and we are entitled to them and make sure the ranges are stated. They are usually in brackets. Post them for members to comment upon them.

    This is a link and the pharmacist has hashi's and members have said it is a good book.

    I have hypothyroidism and know that with hashi's it is more difficult as you have high and low swings of thyroid hormones but you will become hypo too.

    P.S. if you've had a recent blood test get a copy and post. If he's not done all of the recommended blood tests request those. Free T3 is particularly good as that's the Active hormone which drives our bodies and sometimes we don't convert sufficiently to T3 from levo.

  • I feel you saffiepurple, this was me 12 months ago😔

    I agree with Clutter. Please don't just try gluten free, but make it's lifestyle choice if you haven't already? I have hashi's and had terrible face swelling, weight gain, headaches, ridiculous hair loss, dry face and hands, constipation, panic attacks, depression, anxiety and more if you can believe and doc said I was fine, numbers in range and so on😡

    I got worse - even when I finally got meds - it wasn't until I got my diet right (paleo) and my meds and supplements right too that I started to get better. But better I am 😀.

    There is hope I promise🙏 but please get all your levels checked (vit d, ferratin etc) persist with getting a dose increase but please also do your part with diet - I promise it works. I may take 6 months to feel fully better but it'll change your life 😉) feel free to pm me if you wish. Sending you hugs xxxx

  • i have normal range of thyroid feel awfull hair loss sickness depressed so tired i may have to give up the job i love no patience ,muscle weakness always cold no aappetite im at my witts end can any one help me or refer me to a specialist ,

  • Do you have a copy of your lab results? If so, post them here with a seperate question. :)

  • no but i am going to my doctors on wednesday so i will ask him for it ,thank you for your reply im having a job to cope with my every day life

  • I know exactly what you mean! As a general rule, always ask for a print-out of every blood test you have - with ranges. It is your right to have it, and it makes it so much easier to keep track of things.

  • Make sure your total t4 and total t3 are well within the normal range upper half of it! I had same problem with GP I was sleeping 23 hrs straight missing days, and was diagnosed with chronic fatigue syndrome, I was taking the strongest dose of anti depressant, I was on 50mcg levothyroxine then, endo I saw upped it to 100mcg, psychiatrist said at least 150mcg levothyroxine, with each increase in dose I felt better, I have taken 250mcg levothyroxine 6 months now and am just starting to feel average! But I'm not taking anti depressants (after 7 years) and no longer suffering from chronic fatigue I have suffered symptoms of Hashimotos for 25 yrs! Your body has probably been without levothyroxine for quite some time! Your GP will only generally look at TSH level God knows why it makes them blind to actual hormone levels! Ask for those tests to be done! I soon realised that my GP was not listening and to be frank I think endocrinologist unless they specialise in Hashimotos are overrated. There are plenty of medical books and self help books Available on Amazon, and Mary Sholoman Twitter page very informative! Don't lose hope! But my advice on handling Dr s research and study endocrinology yourself!

  • Just wanted to say that free t4 and free t3 are the best tests, not totals. Also, when a person doesn't convert their t4 meds well a dose that makes them high in range, will make a high reverse t3 and that will make your meds barely work at all. This happens to me. I have to keep my t4 meds so low that i am below range or i make too much rt3.

  • Certainly you should get tested your levels of vitamin D. It is possible that you might be also vit D deficient. Speaking from experience.

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