Hypothyroid symptoms but apparently I'm "normal"!!!

Hi all, 29 yr old female feeling 89 yr old! Been hypothyroid for 8 years and take 125 levothyroxine presently. I seem to have gotten worse over the last year. I've put on 4-5 stone in the past few years and I feel absolutely exhausted now to the point it is having a very negative impact on my life!

Story so far...

GP finally referred me to Endo

Endo requested Overnight Dexamethasone test to check for cushings plus other tests.

Results back so far are:

TSH - 0.08 (0.2-4)

Free T4 - 15.6 (11-22.6)

Free T3 - 4.4 (3.5-6.5)

No reference ranges provided for the below:

Overnight dexamethasone suppression test

Cortisol - 26 (normal)

Vitamin D - 69.7

B12 - 355

Folate - 4.2

Thanks in advance xx

10 Replies

  • Hi Tarajp123 Your FT4 and FT3 are too low. FT4 should be in the top third of the range (19+) and yours is 39% through range. FT3 should be in the top quarter of range (5.75+) and yours is 36% through range. Your conversion is OK at 3.5:1 (good conversion takes place at 4:1 or less). You need an increase in your levo despite your TSH being low. Unfortunately most doctors tend to dose by TSH.

    Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in an article in Pulse Online magazine:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    If you email louise.warvill@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP/endo.

    Your vitamins and minerals aren't at optimal levels, they need to be optimal for thyroid hormone to work properly.

    Vit D should be 100+ so you could supplement with 5000iu D3 on alternate days, or 2000iu daily, for now to bring that up. When taking D3 we need to take K2-MK7. Vit D aids absorption of calcium and K2 directs the calcium to bones and teeth rather than arteries and soft tissues. Take K2 at a different time of day to the D3, and take both with some dietary fat.

    Your B12 is too low. The Pernicious Anaemia Society recommends 1000. You can supplement with Jarrows or Solgar sublingual methylcobalamin lozenges, 5000mcg to start and later reduce to 1000mcg. When taking B12 we should also take a B complex to balance the B vits. Thorne Basic B and Jarrow B Right are both good ones and contain methylfolate which will help improve your folate level (but it's difficult to know how that falls within the range as it hasn't been provided).

    I'm afraid I can't help with cortisol as I don't know that test.

  • Wow thank you so much for this information. Would you recommend I wait for the Endo to suggest all this? What are your views of a combination of T3 and T4 treatment? The Endo hasn't ruled this out. Xx

  • Tarajp123 It's debatable whether the endo will know all this to suggest it but it would be an idea to take the article by Dr Toft to your appointment and discuss it with him. They don't tend to like being presented with printed stuff, but Dr Toft should hold some sway because of the fact that he's a leading endocrinologist.

    I take a combination of T3 and T3 but my conversion was poor, around 6:1. Yours is within the 'normal' ratio of 4:1 or less but at 3.5:1 it could be improved so if your endo does suggest a combo then it's a good idea to accept his suggestion. They should keep an eye on your FT3 when on a combo as it shouldn't go over range, so do ensure that this is tested each time if he does give you T3.

  • Your TSH is too low given that your fT3 and fT4 are both in hte lower half of their reference intervals. Sometimes the 'hypothalamic pituitary thyroid axis' can get down-regulated, i.e. the TSH is always lower than usual. This gives two problems. 1. As the levothyroxine dose is increased the thyroid output falls and your hormone levels remain low. 2. As you get on larger levothyroxine doses the TSH becomes suppressed and this affects 'type 2 deiodinase', the ability to convert T4 to T3. This means that once your fT4 approaches the upper limit of its reference interval your fT3 remains low and you remain hypothyroid. Increasing your levothyroxine to 150 mcg should give you a better fT4 figure. If your fT3 is still low then your endo needs to prescribe L-T3 (liothyronine) and pehaps reduce your levothyroxine a little.

    Since your TSH is not accurately reflecting your blood hormone levels your endo needs to focus on your signs and symptoms along with the fT3 and fT4 figures.

  • Have you 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 of being hypo. NHS rarely checks TPO and almost never checks TG.

    If you have Hashimoto's, then you may find adopting 100% gluten free diet helps reduce symptoms.

    If you keep reading posts on here and on main Thyroid UK.org site you can learn a lot about how important nutrition and vitamins and minerals are for thyroid hormones to work.

    Make sure you get the actual figures from all blood tests done (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 yet.

    Usual advice on any thyroid blood test, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo 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 of TSH as high as possible.

  • Your folate is also too low. A good vitamin B complex that contains more than the RDA of B vitamins should raise your level. Make sure you DO NOT get one aimed specifically for women as the folate to vitamin B12 ratio is deliberately skewed.

    You should get your ferritin and haemoglobin tested. If the doctors refuse to do it you will have to get them done privately.

    You want a ferritin level half way in the range as a minimum. The minimum ferritin level of 15 is not enough to have an optimal level. You will have iron deficiency symptoms at that level. Ferritin is your iron stores. Those with low ferritin levels often end up with iron deficiency anaemia.

    The WHO recommends a minimum haemoglobin level 12g/dL (120g/L) lower than that they consider you to have mild iron deficiency anaemia. I've read studies that state you should have a level of around 13-14g/dL to be optimal though the NHS is happy with levels as low as 11.5g/dL!

    For both doctors will not treat you if you fall above the lab range so if they are low post back and you will be directed to advice. Be aware just because one is high the other may not be.

    SeasideSusie has told you about the rest.

  • Tarajp123 I cannot add anything. I just want to send you heaps of love. It sucks to feel that way. You are 29 and should be able to go out and lead a fun active confident life. I send hugs and High hopes for a solution xx

  • Thanks so much for your support xxx

  • I reply to Seasidesusie ref vit d. I thought you were supposed to take vit k at the same time as the vit d rather than away from each other? I take mine together

  • Hi Jefner I only saw this post by accident. If you want a member to respond you need to make sure they get a notification either by replying directly under the particular post or by putting @ in front of their name and then clicking on their name from the list that pops up which will turn their name blue and automatically alert them, otherwise your reply or question will be missed :)

    Vit D and K2 work together as you know so you should take them both. I saw an article that recommended taking them at different times of the day but unfortunately I didn't bookmark it and can't find it now. K2-MK7 (the recommended version of K2) stays in the body longer than K2-MK4 which makes it acceptable to take it at a different time to D3.

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