No answers!

I was diagnosed with under active thyroid almost 5 years ago, starting off being boarder line for a long time until eventually receiving treatment.

My dosage of levothyroxine started out at 50 micrograms and has increased over time to 300 micrograms per day that i am currently on.

Numerous visits to the GP regarding my many symptoms generally results in me returning home with unanswered questions and me considering that im actually loosing my mind!

I was refereed to the hospital at one point and after discussing WHY i felt that i had put on weight and what i was unhappy about i was told everything was fine!

As it stands today i do not have the energy to get out of bed (but have to as have to work) my symptoms are: weight gain, hair loss, cramps, heavy menstrual cycle, memory loss, depression, i could honestly keep going. The dizziness and the feeling of not being able to swallow are what are concerning me the most at present.

I am totally at a loss as to what to do now and it is effecting my home life, my family are understanding to what im going through but i have went from a strong minded upbeat person to a emotional and physical wreck..

On reading all the other comments i can see everyone else is in the same situation but i just wanted to know if there was any further help i could look into to at least try and have a better quality of life.

10 Replies

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  • OK, so its not the dose you are on, its the amount that goes in, and is converted to the active hormone T3. And that is before we consider that you might have an associated condition or nutritional deficiency.

    Do you have your most recent blood results? If not ask for them at the doctor's, you are entitled to a copy.

  • No i don't I was not aware you were able to request these until i came on this forum.

    Can i go to my GP and request the last test? i doubt it was a full blood test as i was tested for Arthiristis and DVT as i suffer with sever swelling and pain when i have been on a flight, this came back negative but my thyroid levels were low.

  • All of your symptoms above are hypothyroid as well as the swelling/dizziness. Before blood tests were introduced along with levo the doctors would have been aware of what your symptoms meant and prescribed Natural Dessicated Thyroid Hormones. Not nowadays.

    thyroiduk.org.uk/tuk/about_...

    Theoretically, if optimally medicated with the right hormones for you - you should have no symptoms and getting on with life.

  • 300mcg is a high dose

    If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    Also do you know if you have had your thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause in UK of being hypo. NHS rarely checks TPO and almost never checks TG.

    NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

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

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many of us take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's & Grave's too.

    vitamindcouncil.org/tag/aut...

    chriskresser.com/the-gluten...

    verywell.com/should-i-take-...

  • Thank you so much for this, i had been looking for alternative ways to get my bloods taking but didn't know were to start. I have ordered what you suggested and will post the results as soon as they arrive.

    My dosage is very high and I have been on this for 2 years now, they did drop it down to 275 mg but that lasted a month and they put it back up.

    I have not felt as unwell as i do at present and i am really struggling to be positive because its hard to explain to people why yo feel so unwell when you don't necessarily look it from the outside!

    I now i have never been tested for half the things you mentioned above so hopefully this will shed some light onto why nothing seams to works.

    Thanks again.

  • Welcome to our forum and the members will give you support. Thousands have been in a similar situation.

    Do you have recent results of blood tests? If so you can post them with the ranges. If not, make the earliest possible appointment for a fasting blood test but you can drink water. Also don't take levo for about 24 hours before test and take it afterwards.

    Ask for a Full Thyroid Function test, i.e. TSH, T4, T3, Free T4 and Free T3 as well as Vit B12, Vit D, iron, ferritin and folate.

    The most important is the FT3 test and this is the reason:-

    T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

    The approx. reference range for Free T3 is 4 to 8.3

    We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340.

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

    If GP wont do some tests we have recommended labs that can do so and you can get a small discount if you quote Thyroiduk's code number.

    300mcg is a high dose but if you don't convert to sufficient FT3 its useless.

    (I am not medically qualified and have hypothyroidism - undiagnosed and untreated for a long time).

  • Well I'm no expert and only recently diagnosed with Hashi's, but I do know that to help you out a bit more it would be great if you have any info re your Vit B12, ferritin, folate and Vit D3 levels (with their ranges), if you've had them tested. And if not, then testing for those is pretty important as the thyroid doesn't act alone. You many be deficient in one or more of those nutrients and that will impact how you feel. You can get them privately tested via Blue Horizon or Medichecks if you can't get your GP to do it.

  • I have just sent away for the test today so we'll post the results once they are through

    If I'm unsure if anything am I to take the results to my GP or is that a pointless task?

  • I'd say talk them over with people here, and if you decide you want to take them to your GP then we'll get you armed with the right information so you can press your case. And even if he doesn't listen then it's not the end of the road, and people here can advise you further. :)

  • Doctors very often have no idea of what they are treating. All I can say is that you change your meds from levo to NDT.

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