Diagnosed with Subclinical Hypothyroidism...still having symptoms. Please help.

I was diagnosed with Subclinical Hypothyroidism in April of last year and have been tested periodically due to symptoms persisting. My blood results as follows:

April 2016

Tsh 5.8 mU/L (0.35-5.50)

free T4 9.4 pmol/L (7.0-17.0)

TPO 528.8 U/ml <9

treated with 50 mcg levothyroxine

July2016

Tsh 2.88 mU/L (0.35-5.50)

free T4 10.3 pmol/L (7.0-17.0)

continued on levo 50 mcg

sept 2016

tsh 4.11 (0.35-5.5)

free T4 10.1 (7.0-17.0)

50mcg levo

nov 2016

tsh 4.38 (0.35-5.50)

free T4 8.8 (7.0-17.0)

levo upped to 75mcg

feb 2017

tsh 2.96 (0.35-5.50)

free T4 11 (7.0-17.0)

feb results i feel worse than i ever have and doctor thinks i may have another hormone issue.

What do you think?

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26 Replies

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  • We really need ranges on these results (figures in brackets after each result).

    Most people on levo need low TSH around 1-2 to be adequately treated. The FT4 needs to be in top third of range.

    You also need FT4 & FT3 tested at same time, plus ideally TT4.

    If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferritin. 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 thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both antibodies are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO AND high TG, but negative TPO and raised TG is possible, though rarer.

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

    When you get further results suggest you make a new post on here and members can offer advice on results

    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...

    Special offer at moment

    thyroiduk.org.uk/medichecks

    Usual advice on ALL thyroid tests, 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

    Are you aware that thyroxine must be taken on an empty stomach and then nothing apart from water for at least an hour after. (No coffee or tea) Many take on waking, but can be more convenient and recent research, suggests perhaps is more effective taken at bedtime. (Must be at least two hours after eating)

  • Hello,

    thankyou for the reply. The TPO was taken the first time i had my blood taken. It is at the top of the post 528 range is <9.

    I cant figure out how to edit my post but the ranges are the same as the ranges I have posted at the top. Im sure I have had t3 and reverse t3 done but wasnt given them when i requested copies of my results, will have to ask for them again.

  • Edit by first clicking on the v symbol adjacent to the like box.

  • thankyou

  • I'm sorry you feel worse than ever and that's most likely due to such a low dose of levothyroxine. A low dose can backfire and make us feel worse. 50mcg is a starting dose and I don't know what your doctor means by 'subclinical' as your TSH was the top of the range when you were diagnosed, plus having antibodies means, as SlowDragon states you have an Autoimmune Thyroid Disease called Hashimoto's which is the commonest form of hypothyroidism.

    You need more levothyroxine and increases are by 25mcg each time until your TSH is 1 or lower. Your FT4 is too low to allow you to have sufficient T3 and it is T3 which is the only hormone required in our receptor cells and to have sufficient we need a decent dose of levothyroxine.

    Going gluten-free can help reduce antibodies which attack your thyroid gland - sometimes too much and at other times low.

    Email louise.roberts@thyroiduk.org.uk and ask for a copy of Dr Toft's Pulse Online article and in it you will see how low he recommends the TSH should be and discuss with your GP for an increase.

    I really think doctors are confused as they are directed not to prescribe until the TSH is 10 which is ridiculous when other countries prescribe when it is 3+.

    If you've not had B12, Vit D, iron, ferritin and folate tested ask for these to be done, probably at your next blood test.

    Dr Toft was President of the BTA and is the Queen's physician when she's in Scotland.

  • I have just been for a number of blood tests which included Thyroid tests and FBC but not sure about the vit d b12 and ferritin and folate. I will be going to see GP on Friday.

  • Am afraid those tests detailed above have to be requested by you as they are not automatically done as in a FBC. So you would know if they were being done .... :-)

    Maybe go for the Private Testing as suggested by SlowDragon above - so many people do that now as it seems the only way to uncover the FULL story.

  • Oh really...thankyou. I will look into private testing. I was also thinking about going to see a private endo because I feel I am getting nowhere and I have been treated now for almost a year. Do you think it would ne beneficial to me?

  • Private doctors of any kind still have to follow the guidelines and rules used by the NHS. And the majority of private doctors also work for the NHS.

    There are some doctors working privately who will interpret the rules in a less rigid fashion than they do when working for the NHS but they are few and far between.

    Seeing a private doctor is expensive. Costs involved :

    Initial consultation fee

    Private blood tests of the doctor's choosing

    Follow-up consultation fee

    Private prescription fee

    Cost of meds when acquired with a private prescription

    And further follow-up consultation fees and private prescription costs and medicine costs and blood tests.

    It's far cheaper to order private testing of your own, post the results here, and ask for feedback. If you then choose to show your results to your GP (who may choose to ignore them) or show them to a private doctor that is up to you.

    If you do ever show private blood test results to a doctor, if they choose to ignore them just point out that a lot of the testing is actually done by labs that the NHS uses too.

    If you contact Louise Roberts via email :

    louise.roberts@thyroiduk.org.uk

    (Louise works for Thyroid UK :) ) and ask her for the list of good private endos and doctors you might find a doctor who can help you.

  • Thankyou may be too costly for me to think about.

  • Goodness me!!! Lab ranges are not needed but thyroid medication is!!!!

    You are HYPOTHYROID your doctor is inept!

    This Subclinical is nonesense, you need thyroid medication!

    Your doctor is waiting for your TSH to get to 10! It may never get there!

    Please message me if you like, click on my name and send message.

    More damage is done by not treating a failing thyroid!

    Sue

  • thankyou for your reply....i was hoping i would have a small increase at my last appointment but Dr says I am in range.

  • You may be in range - but it is where you are in the range that is important :-) Bumping along the bottom is not a good place to be for good health - we all need optimal !

  • You will not feel well until you free t4 is at the top and free t3 towards the top of the ranges.

    Also your vitamin d, B12, ferritin and folate towards the top of the lab ranges!

  • Thankyou...Just a quick question also...I told my previous GP that i had symptoms of both hyper and Hypo and she almost laughed at me. Am i imagining this?

  • Change your gp !!!

  • Change your gp!!!!!!!

  • I have changed now because i felt my previous one was not taking any of my symptoms into account.

  • No, you're not imaging this, your doctor is just ignorant and bad mannered.

    When you start taking thyroid hormone replacement, the hormone will not be distributed evenly amongst all the millions of cells. To begin with, some cells will get too much, whilst others won't get enough. It will sort itself out.

    Plus the fact that symptoms cross over - some symptoms are both hypo and hyper, like high blood pressure, for example.

    But, doctors know nothing about symptoms. They don't 'do' them in med school. So, your doctor really should be more careful about showing her ignorance in front of a patient that is, one day, going to know a lot more than her!

  • Thankyou thats very helpful.

  • We do not want to be 'in range' we want 1 or lower. As Dr Toft says:

    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).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added. "

    Dr T is a past president of the BTA.

  • elbac Just to clarify, is it correct that you were on 75mcg levo when your Feb blood test was done and the result was TSH 2.96 and FT4 11?

  • yes that is correct 75mcg

  • I told my previous GP that i had symptoms of both hyper and Hypo and she almost laughed at me. Am i imagining this?

    No, you aren't imagining this. I've no doubt there are quite a lot of reasons why this might be the case. One that affected me is related to cortisol levels.

    When the thyroid starts to fail the body produces extra cortisol and adrenaline to make up the deficit in thyroid hormones. It isn't a good substitute, and is probably the cause of a lot of the depression and anxiety there is in the population these days. In many cases, when thyroid hormone is eventually prescribed, the cortisol and adrenaline will gradually reduce by themselves.

    But in some cases the cortisol and adrenaline don't reduce. This means that people could still be hypo (because they don't have enough thyroid hormone) but will also have hyper symptoms (because they have too much cortisol and adrenaline).

    Getting nutrient levels to optimal might lower cortisol and adrenaline output. But sometimes other treatments are needed.

    In some cases cortisol and adrenaline will reduce if the thyroid hormone taken is changed. So, Levo might not work, but NDT will (for example), or perhaps T3 added to Levo will work, or changing the brand, or taking T3 only. It is trial and error, sadly.

    Please note that having too little cortisol will also tend to cause mixed hypo and hyper symptoms.

  • I had some blood tests this morning including cortisol. I think adrenal function and also sex hormones. Hopefully I may have some info by Friday. I also find that my menstrual period effects my symptoms too you see.

  • So i went to GP yesterday and all blood tests I had are normal and he thinks my symptoms are being cause by my mind??? Im so upset because I feel like my condition is making my life unenjoyable.

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