First Post - Advice and help please with under active thyroid

I’m feeling so desperate, for the last 2 years my annual blood test my results have been so say normal, (I've been underactive for 8 years) even though I had been feeling exhausted. I accepted it the first year, if it says normal it must be right. After having my next test in August again last year I still accepted it but since then I seem to gradually feel even worse and thought maybe something else is wrong, I went back and asked for another test (results below) and as far as the doctor is concerned they were normal, but after explaining how bad I’m feeling and that I literally have no energy, I’m sleeping or needing to sleep more, with tingling and aching muscles in my arms and legs, which feel like lead weights when I wake In the morning and tells him that it is really affecting my mood, I would say that I’m depressed, but I think it’s more to do with the fatigue and feeling like I’m in my 80’s when I’m 48. It’s affecting my work and basically consumes my thoughts most of the day, the dr said he would up my levo, putting me up to 125 and that I should go back in 8 weeks for another blood test.

Test 1.1.17

TSH 3.98 (0.27-4.20)

Folate 3.2 (2.50-19.50)

Ferritin 265 (30 -470)

Serum sodium 144 (133-146)

Serum potassium 3.7 (3.50-5.30)

Serum creatinine 74 (45-84)

And blood count, bone profile etc which all came up “normal”

I have now managed to get T3 included in my next test which is in 4 weeks’ time.

Since the increase I think I’m actually feeling worst, I’m not sleeping so well at night even though I’m tired. Could someone offer some advice please and also I need to mention I do evening dancing (after a couple of hrs sleep in the afternoon) sometimes 4 hours on a weekend, I read in someone else’s post that exercise uses all of your T3 (or something like that) I must admit nowadays I rarely leave the sofa on a Sunday. Sorry for the long post, all comments appreciated, this is my first post, thank you for reading, hoping for advice to get me through the next 4 weeks.

17 Replies

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  • Clarelouiseca Your TSH is high for a treated hypo patient. Generally we do better with TSH 1 or below.

    Were FT4 and FT3 tested?

    Folate is quite low. You could do with B12 being tested because your tingling could very well be due to low level of that. B12 and folate work together.

    It would be an idea to get Vit D tested too.

    Ferritin should be half way through range​ so yours is good.

    Yes, hard exercise can deplete T3, and if you haven't got much to start with you will certainly feel unwell. It might be an idea to cut out the dancing until you feel better. You really could do with FT4 and FT3 testing to see where your levels lie and to see how well you're converting.

  • Thank you seasidesusie

    Do we have a right to demand to be tested for FT4 and FT3? What does the test say for Vit D, I thought it had been tested (does it actually say Vit D) and the same question for the B12, there is a list of other things tested ie haemoglobin, platelet count, mean corpusc and more, they say normal and I don't understand what they are, but didn't post as it says normal. There are a couple of things that are hightlight with !! warning, which is red blood cell count 3.76 (3.80-5.30), mean corpuscular volume 100.3 (83.00 - 100.00) and mean corpusc haemoglobin 34.6 (27.00-32.00) I can see some are under / over but the dr wasn't concern and I have no idea what it all means.

  • Clarelouiseca Unfortunately we don't have the right to demand FT4 and FT3 are tested. Some surgeries only test SH, some test TSH and FT4. Even when FT3 is requested by a doctor or is the lab who decides if it is going to be carried out. This is why so many of us do our own tests with Blue Horizon or Medichecks. There's no saying if a GP will accept them, but at least we can see what is going on and delete use what to do.

    The Vit D test will say something like 25-hydroxyvitamin D or Vit D 250OH.B12 should say B12.

    Your doctor should be concerned about out of range results. When they say something like that we need to respond with something along the lines of why are there ranges if they are going to be ignored, they must be there for a reason.

    Red blood cell count under range might be associated with anaemia and I think elevated MCV and MCH can be too. You can check out blood test results at labtestsonline here labtestsonline.org.uk/under...

    Personally I would read up on it and even though maybe only slightly out of range I would want answers and further testing from my GP.

  • SeasideSusie thank very much I will do all those things and go back understanding more. I'm a real mess today I don't know what's wrong not thinking straight I've never been this bad before I'm at my lowest ever :)

  • Hi sorry for you feeling so rubbish I'm feeling pretty much the same except I've never been diagnosed and now just keep being told it's anxiety and ibs. My levels were all normal except TPO ( which was a test I had privately along with T4/T3) but as my tsh, T3and T4 are all normal he completely dismissed the TPO saying it's a pointless test and just causes them more hassle. But I am now also vit D and folic acid deficient and last year had to have injections for b12 it's all so confusing isn't it!

  • The reason you are still unwell is that hypothyroid patients shouldn't be in the 'normal' range as doctors mistakenly believe. Once diagnosed our TSH should be around 1 or lower our Free T3 and Free T4 towards the upper part of the range. For the next blood tests you should ask for Free T4 and Free T3 and you can tell your GP you have taken advice from the NHS Choices Thyroiduk.org.uk for information and help.

    We have to read and learn ourselves as we may not recover our health as we should as they restrict us. So specifically ask that you have a full blood test as your doctor has only taken the TSH. Ask for T4, T3, Free T3 Free T4 and thyroid antibodies. Some labs wont do these if the TSH is 'in range'.You can have a private home blood test for all of these and we have recommended labs.

    Levothyroxine should be taken first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake. Or you can take it at bedtime as long as you've last eaten about 3 hours before.

    Blood tests should always be the very earliest, fasting (you can drink water) and allow a gap of 24 hours between dose of levo and the test and take afterwards. This helps keep the TSH at its highest so they wont adjust our dose unnecessarily.

    Always get a print-out with the ranges. We have to read and learn in order to get well.

    You can see on this link the importance of FT3.

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

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

    Levothyroxine is T4 and inactive. It should convert to T3 the only active hormone required in our receptor cells. If dose of levo is too low, we don't have sufficient T3 especially needed in brain and heart. Also it runs our whole metabolism, so pulse and temp are usually low before diagnosis.

  • Hello shaws, re: the tests you have suggested I am going to ask for those myself next time. Wondering what the difference is between T4 and Free T4 etc. is?

  • This is from the first link above. I don't know too much myself:

    TT4 = TOTAL T4

    Thyroid hormones bound to proteins. TT4 lowers when the thyroid is struggling.

    The approx. reference range for this test is 50 to 160.

    FT4 = FREE T4

    Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

    The approx. reference range for this test is 10 to 24

  • Thank you 😊

  • As far as I am aware studies that show t3 is depleted by hard athletic performance aren't conducted on normal people but on athletes undergoing very intense exercise, so it's hard to know what the rest of us can take from that. If you are feeling awful and your t3 is barely within range, it might be an idea to take a break.

    The thing about exercise is that it can help us feel well, and if you're getting rest before dancing and it is helping you sleep for example I'd suggest you don't stop but ensure it is manageable.

    When we begin to trim our lives to fit our hypothyroidism the circle can get very small indeed, so I think that should be kept in mind. Life and well-being extend beyond blood levels for most of us.

    I am not responding to or disputing any particular reply here, just wanting to add my own thoughts. :-)

    And yes, you're undertreated and shaws is right, Idk why they insist on the range when it is not for people on meds. This is a detail that is so commonly misunderstood by docs it must be one of the most persistent reasons for illness among members here.

  • puncturedbicycle thank you yes dancing makes me happy. I need to get the right balance of everything

  • I think you need to have your vitamin B12 levels tested. It's important that you don't take any B12 supplements before you have this blood test.

    When I was B12 deficient I also had high MCV like you. It is not uncommon to have B12 deficiency and thyroid problems.

  • JanD236 thank you I will get that checked to

  • Thank you for comments, I'm having a really bad day today and I really appreciated it. I'm going to try (if I can get one) to make an appointment at the docs and see if I can get these extra test added on for my blood test in 4 weeks. :)

  • Members aren't notified you've replied re their comment with a response, so if you put and @ before their name you will see name appear below, click and they will be alerted i.e. puncturedbicycle JanD236

  • T4 or Levo is what we take and FT 4 or free T4 is what is measured in the blood stream that's not bound to anything else.

  • Hi Clairelouisca - Global Healing website has details of the top 12 supplements to boost your energy. Iodine apparently synthesises T3, an is found in sea foods, sea salt, and as supplements.

    I am trying their B 12 supplement as it is the only one that does not contain cyanaide which

    has to be disposed of by the liver and is not neutralised by stomach acid. I am also trying folic acid, B vitamin which helps with anaemia

    - vita min c also helps with the uptake of iron. Apparently there are many people over 40 percent

    who have deficiencies in folic acid. As it is a vitamin which is not stored in the body, you cannot overdose yourself. I have also stopped drinking tannin products such as tea coffee chocolate,

    but am eating a recommended berry diet which helps accelerate your metabolism.

    I am sure the iodine found in kelp - and in some table salts helps the thyroid - a quarter teaspoon

    of sea salt in cooking, will give half the daily dose of 150micrograms.

    High dose of vitamin C !000gms is recommended by some administrators as it helps the adrenal glands.

    The berry diet such as black currants blackberries raspberries and blueberries - bilberries-

    can be bought frozen.

    Research shows that green and red apples have a lesser amount of polyphenols

    can be bought frozen. Holland & Barrat do folic acid - the tablets are small .

    The nutrition resource org gives details of how tannin can make you anaemic and MD

    Gundry shows how the berries accelerate the metabolism. Hope you feel better soon.

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