Confused about recent blood test results for my Hypothyroidism

Hi there, just came across this website after trying to look up about my thyroid levels etc. My thyroid levels haven't been right since my 1st pregnancy (which was nearly 8yrs ago), and my thyroid medication has been gradually been going up since then. As of Sept last year my medication dose had gone up to 375mcg daily, when I went to the doctors in September was was feeling more tired than usual and even my hairdresser commented on my hair that was coming out when she was washing/brushing it. When I got my blood test back my Dr said my levels were showing I still wasn't getting enough and she wanted to refer me to the Endocrinologist. I seen the Endocrinologist in Dec and she told me to lower my dosage to 300mcg and not to take it with other medications due to it blocking my body from absorbing the thyroxine and to come back in a month. Today I went back (got another blood test done last week to re check levels) hoping for answers as I have felt worse this last month (more tired than ever, extremely depressed, pins and needles, pain and numbness in hands, nails are paper thin & skin is really dry also my eyes aren't focusing like they usually do even with my glasses my eyes feel tired and sore at times) to be told to stay on the 300mcg as my ft4 (think it's that one) is at 23. I asked how when I've never felt worse and the Endocrinologist said "don't know u need to ask ur GP as ur thyroid is perfect" then followed it by " I see ur on pain medication, my sister found she felt better when she went cold turkey and came off all her med". I was stunned as I'm on medication for (depression, sciatic nerve and nerve damage, HRT and osteoarthritis). Now i am stuck again feeling like no-one is listening. If u have made it this far I applaud you, sorry for the rant!!!

26 Replies

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  • Are you taking your thyroxine on its own first thing in morning with just water and nothing else for at least half hour?

  • Yeh was told by Endocrinologist in December there to lower my dose to 300 from 375mcg and take it 2 hrs before my meds. I told her when I get up the first thing I usually neednto take is my pain medication. So she said take thyroid medication in between my pain killers (2hrs after my pain killers and then that way I have 2hrs before next pain killers). I was doing this all December and all this month. Got blood test last wk and was at Endocrinology clinic today. Told my level is at 23, so thyroid is fine. I asked about why I'm feeling worse (skin dry, hair falling out that my hairdresser commented, brittle nails, feeling cold and extremely tired and depression worse. The Dr/consultant just said " oh I don't know why u have all those thyroid symptoms as level is fine, u should speak to ur GP" then he said "u know my sister wasn't feeling great and she came off all her meds and felt great, cold turkey she went. Maybe u could consider that?". I said do u know what and why I'm on the medication I'm on and he said no!!

  • Do you eat with your pain meds in the morning? Then have nothing to eat or drink except water from then till you take your thyroid meds? Then nothing after taking them for half hour at least food or drink wise except water.

  • And 4 hours away from HRT?

  • Have you got or can you get any blood results and their rages? That would help such a lot so we can see what is going on. Your doctor can't refuse to give you a copy though he is entitled to charge a small sum to cover the cost of paper and ink. If you need to get results then may be better to start a new thread when you get them Ranges are important as they differ from lab to lab

  • You may have high FT4 but you need to know if you are converting it all into ACTIVE FT3. T4 is a storage hormone.

    For a good conversion you need good levels of FERRITIN - FOLATE -B12 - VITD so have those tested too.

    The main website of this forum will explain everything you need to know about the Thyroid including Blue Horizon Private Home Testing Kits - used by many on this forum. Go for Thyroid Profile 11.

    Many of your symptoms could be caused by LOW T3 - vitamins and minerals.

    thyroiduk.org

  • has anyone bothered to test

    ferritin

    folate

    b12

    vit d3

    they are utterly vital and must be at least halfway in their ranges otherwise your body simply cannot utilise the levothyroxine and will make you more ill

    always get copies of actual tests done your legally entitled to them and its the onky way to fathom whats happening

    taking anti depressants is really bad for the thyroid so you need to wean yourself off them and hrt too

    its likely that all your other " diseases " are actually badly treated hypothyroid but we cant tell without test results

    Endos and GPs far too often have no idea hiw to correctly treat hypothy

  • Many people (myself included at times) take antidepressants and have thyroid issues. It's not ideal, but you can't just tell someone that they shouldn't be taking certain meds! It's something to consider of course, but alongside all other factors, as an informed and personal decision.

  • Fio1331, I'd say it's both. You can choose to take them if you like, and if they've worked for you and you're feeling a lot better, ignore all other advice; symptoms are the most important thing.

    But it's also true that they're not good for Hypo people, and you should think much more long and hard than if you didn't have a thyroid disorder.

  • Yes, that was really what I meant. I was worried by the phrase ' you NEED to wean yourself off them', like it was vital, rather than advisable.

  • I take Mirtazapine (for anxiety) at a small dose and have for 3 years, it's not something I can come off right now and comments that it effects the thyroid is worrying.

  • Try not to worry too much. Sometimes we have to take combinations that aren't ideal - but it's all a matter of informed choice. The consequences of NOT taking them might be worse for you. As I said above, I took antidepressants while on thyroxine - it was right for me at the time.

  • Thank you. I take it for anxiety and insomnia and I also take a low dose contraceptive pill to manage my heavy periods. Needs must.I just hope neither have caused or are causing the on going thyroid condition and fatigue I have.

  • I'm sorry you are having problems and it is common for hypothyroidism to occur after childbirth. I shall give you a link which may be helpful.

    Your story isn't uncommon. First we have to take our own health into our own hands when we haven't improved and the Endocrinologists/doctors turn their backs upon a patient who has disabling symptoms.

    The reason for this is that Endocrinologists (in the main) and doctors in general have no inkling how disabling symptoms can be. They've no knowledge or expertise in resolving the clinical symptoms and that is what a thyroid hormone replacement is supposed to do. Many people's bodies cannot cope with a synthetic hormone: others may have a defective gene DIO2 which means that T4 cannot be converted at all into T3.

    Has your endocrinologist ever tested your Free T3 and Free T4 to see what's circulating in your body. Do you know what your TSH, T4, T3, Free T4 and Free T3 is? We do expect the medical profession to solve our problems - but for many hypothyroid patients - it is a Do It Yourself and it is worth it when we feel much better. All of our members have had various experiences and they do come to the aid and try to alleviate symptoms.

    When you have a blood test for your hormones it should be the earliest possible, fasting (you can drink water) and allow about 24 hours between your last dose of thyroxine and blood test. Always get a print-out with the ranges for your own records and post for comments. Ranges are important.

    I am not medically qualified but I felt far worse on levothyroxine than before my diagnosis with a TSH of 100. My muscles seemed to turn into blocks of concrete and every movement was so painful. I am fine now that I take an alternative to levothyroxine.

    Some people have a defective gene DIO2 which means we cannot convert T4 (levothyroxine) into sufficient T3. T4 is inactive and T3 is the active hormone required in all of our receptor cells. If we don't have sufficient we have problems/symptoms and doctors appear to be the most uninformed about clinical symptoms the patient is suffering from.

    Their training consists of:

    Patient appears and has a whole list of symptoms: Take their blood and lab will analyse TSH and T4. If the TSH is low (below 10 in UK - there's no problem and send patient away. In other countries patients are diagnosed with a TSH of around 3.

    However, some people do not feel well on levothyroxine and for your Endo to try to solve your symptoms by adjusting she has told you to see your doctor so she is defeated and you are left very unwell.

    There are other thyroid hormone replacements but due to the pharmaceutical companies pushing levothyroxine with monetary incentives, the whole word is prescribing levothyroxine and I assume that there is very little knowledge of the possible alternatives which patients might resolve their symptoms.

    What you need tested is:- TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Vitamin B12, Vit D, iron, ferritin and folate. Get a print-out and post them for comments. Your pins/needles can be due to B12 deficiency and ask for the intrinsic factor to be tested to exclue P.A. and we need everything optimum. Depression can be due to low T3 but they give 'other' medications for symptoms rather than adding T3 to thyroxine.

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

    web.archive.org/web/2010103...

  • No one has ever mentioned fasting, especially the phlebotomist who does my bloods. Even when discussing meds etc with the Endocrinologist there was no mention of fasting and making sure I've left 24 hrs between dosage and blood test. The only things mentioned was to not take it with any other medication and take it 2yrs before/after my pain and other medication, she also mentioned testing my blood for celiac disease (wheat intolerance) as apparently that can affect absorbtion

  • They haven't mentioned it because they are unaware.

    I think they are also unaware that the TSH drops throughout the day and as most only go by the TSH, if you get tested later in the afternoon it will be lower than if first thing and it will also lower if you have eaten. They only appear to take notice of the TSH and adjust meds up/down/ according to the TSH which is the worst thing to do. We need our TSH to be 1 or below and our Free T4 and Free T3 to be towards the upper part of the range. That is if they ever do a FT4 and FT3.

  • Really important you get B12 folate ferritin and Vit D tested,

  • Rant away, sounds like you need to!!

    Get your B12 checked!!! Lot of your symptoms point to a B12 deficiency.

    With thyroid our B12, Vit D, folate, feretin, Selenium should all be higher in the range for us to feel well. Get them all checked. If GP doesn't want to and you can afford it look at

    Bluehorizonmedicals

    Thyroid plus 11 is a fingerprick test you can do at home that will give you answers. It doesn't do Vit D but get the GP to test that, highly likely you are insufficient and will be making you feel like crap.

    Zinc and magnesium levels can also account for hair loss .

    Have you had your thyroid antibodies tested? You need to know if you have Hashimotos Thyroditis. Very common and auto immune so important that you know as you will need to be gluten free amongst other things.

    Re your meds, sounds like T4 (Levo) is not the answer for you. I'm guessing you're not converting T4 to T3 . You could try adding some T3 or switch to NDT (Natural Dessicated Thyroid) contains all the T's you need. GP won't prescribe although the endo should. Most of us all buy privately from abroad. Mine costs around £50 for a years supply. The endoscopy prescription was costing nearly that for 6 weeks!

    You can email admin for a list of suppliers. There's also a Facebook page for Thyroid S. I can pm you a link if you like.

  • Funny you mention B12 as my mum and both her sisters are on B12 supplements due to them all having vitB12 deficiency. Will definitely ask for blood report to see my levels

  • Pain can be gluten related. Going gluten free may help this too as well as improving gut absorption

  • I think most of it has been covered regarding vits and minerals but most likely your HRT is also a big issue. Non bioidenticals will block your thyroid medication. The same for any women out there using contraceptive pills they will lower your thyroid function or interfere with absorbtion of any thyroid meds. X

  • You've had lots of good advice about what to try first, but the advice I want to give you is about handling doctors, and why this Endocrinologist has done this terrible thing to you.

    Many doctors just know very little about thyroid. Unfortunately many Endos are even worse than GPs. It sounds like you were better off with just your GP, even though they didn't know enough to take your treatment to the right level. I think they were even correct to realise that your treatment needs had started to look more complicated than the standard treatment, so they sent you to the Endo hoping to learn more. Unfortunately the Endo was rubbish :(

    Sorry, I'm starting to waffle. But I suspect with such a very high dose of what I assume is Levothyroxine you are not the standard pattern. There is probably something extra going on. But you will probably not be able to rely on doctors, and will need to figure it out yourself.

    This forum is extremely good for that. The best first step is to post your results here, in a new thread, and members will comment on them - it may be obvious what the problem is. If you didn't get copies of those results from the Endo, you can phone to try and get them, but I've found that can be impossible. You can definitely get some from your GP, as you're entitled to copies. Or you could get your own finger-prick private rest kit.

    The BlueHorizon Thyroid sets are very good, as you can get all the tests you're being recommended in this thread in one go for £100-ish. Or the basic 3 for about £45 if money is tight. City Assays is also good for Vit D, I think you may be able to use that to mix and match a cheaper package.

  • Just a few questions

    My Doctor put me 25 mcg of Lev my TSH value went up, so he raised the dose to 50 mcg this was in November. I had a blood test on Monday and got a message that the Doctor wanted to see me I suspect (only suspect) that my TSH value has gone up again.

    My TSH values has been high, but stable, for a number of years at around 6, at my last test it was 9.3.

    Is there any correlation between an increased dose of Levo and a rise in TSH value?

    What is happening when the very thing that is supposed to lower my TSH seems to do the opposite

    I am not at home so don't have my T3 T4 values but I do want to be armed with some question when I speak to the Doctor on Monday.

    I feel fine, no fatigue, no pins and needles etc, I take the Levo in a morning with water and don't eat or drink anything till at least 45 mins afterwards.

    Your input is most welcome

  • I had a similar experience. I had a TSH of 9 last May and was put on 25mcg of thyroxine. Then in July the results showed the TSH had come down to 6.9. I was kept on 25mcg, my fault as I was afraid to rise the meds (I have anxiety) and my TSH crept up to 8. I was then put on 50mcg, which got the TSH down to 2.6! WE thought I was on the correct dose but no 10 weeks later my bloods showed that my TSH had shot up to almost 6 again. My FT4 had come down slightly too.

    What it meant was I needed an increase and I am now on 75mg. The thing is 50mg is a starting dose, a tiny dose so that will be why your TSH keeps rising. I'd get a print out of your results when you speak to your GP and post the results here to get some advice, its' what I did and it has helped me understand a lot.

    Good luck.

    Julie

  • Julie

    Thanks for the reply, I do have a print out of my results but they are not with me.

    My concern is my TSH values were on the high side of "normal" but always stable, the doctor prescribes Levo but the TSH value goes up rather than down, it seems as a response to the introduction of Lev.

    I will fined out all the values on Monday.

  • Find out your results and if you haven't already do a post and ask for some input, there are some very knowledgeable people on here.

    Julie

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