Little update

Well the nice GP came out to see me Thursday. He was lovely and we had a big talk about how I was feeling. I explained I had fatigue building up since last May and it's now got worse. I admitted it has got worse since I was under a lot of stress so adrenal fatigue could well be the cause. He agreed. He looked at my Blue Horizon results and he agreed the TSH at 6.54 was out of range, he said 'you're right you are subclinical hypothyroid but as your T4 is 14 and well within range it shows me that you are converting and not actually hypothyroid'. He said if the T4 was low then I would be classed as true hypothyroid and I'd need thyroxine. He said if he was to give me thyroxin now then that could actually cause me to be hyperthyroid as right now my T4 is working in the body fine. He said many factors can increase TSH and stress is one of them. He said that he will monitor me closely though as I have the fatigue. He didn't seem to think I could be having many symptoms if my T4 is good, is he right? So he wasn't sure if my crippling fatigue which is my main symptom, could be caused by just a high TSH.

He was lovely and seemed to know a lot more than the awful GP I spoke to last month. The nice GP has said he will re test me at the end of March, but I am thinking I will just go with Blue Horizon to compare results, hopefully this will be ok.

He did say my anxiety is worse and I am now scoring high on the depression test, which I knew I would be because since the ground moving/dizziness started my anxiety returned and with it I became scared to go out walking as the floor moved and I felt scared of it. Also my son was badly bullied, he's 12 and he was suicidal, it was a hellish 3 months and wore me down so it could well be that i am truly exhausted now from such an emotional time. He is now well, but i had to counsel him myself and teach him how to deal with anxiety with CBT, all because the mental health team let him down. My family didn't support me so I was coping with 3 children, 1 suicidal and 1 who kept getting sick with virus after virus all winter and my husband works long hours. I was worn down and I do think it all made me depressed. I agree with him on that but my fatigue started last May and has got worse. My eyes sting every day and feel so heavy, brain fog, weak legs and the ground bouncing feeling as I walk. It's been grim.

I am trying to accept what he has said but deep down I know this fatigue is being caused by something, not just anxiety and depression.

I am wheat free now for 2 months. I am eating well, and doing light yoga and meditation. Trying to get out a little here and there to get myself back out, it's just so hard. I went on a day out Monday for my sons birthday, we were out about 8 hours. I got home exhausted but WOW yesterday I was ill in bed. I felt weak all over, dizzy head, woozy eyes, felt sick.... just generally felt rough. The fatigue was crippling. Surely not normal at all? I can't blame anxiety and depression for that lol! I didn't walk all those 8 hours either. We went to the arcades, beach, visit to my Dads. Lots of driving though.

Just thought I'd give a little update.

Julie

53 Replies

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  • Sounds like your adrenal glands are really struggling. But it is vicious cycle. Your adrenal glands are trying to cover for your thyroid or your adrenal glands are suffering and that makes your thyroid go out of order.

    Yet your T4 is low enough for many people to feel poorly. Your thyroid gland is now working overtime and pushing to make T4.

    Doctor is wrong thinking T4 could make you hyper as trialing is monitored and you start slowly anyways.

    Sounds like your batteries are completely empty. Aching eyes and general ill feeling is typical adrenal exhaustion.

  • Yes he agreed it could be adrenal fatigue from months of stress with my son.

    My t4 was 10 and has gone up to 14 so he said that's a good sign I am ok. He said they don't usually treat just tsh raised but hesaid I am subclinical so will be monitoring me closely.

  • But in what range? I am not sure why he is a doctor if he cannot read results or do they bullshit you for fun? T4 is in different range.

    So your T4 has not gone up from 10 to 14. Your T4 was 10 in range 7-17 , and 14 in range 11-22.

    If something, it is same than in previous test, which should be ignored as it was taken wrong time.

  • Sorry not sure what you mean. Yes those ranges are right. So on December the t4 was 10.2 range 7-17. In January with blue horizon 14.2 range 12-22. It's still risen from 10 to 14 though surely?

  • No it has not risen.

    10 in range 7-17 is different than 14 in 12-22. Different labs have different ranges.

    If person A had 7 in range 14-22 they would be severely hypo. If person A had 20 in range 7-17 they would be hyper but in range 14-22 it would be optimal.

    Each value 10 And 14 are in lower end of the range given for that specific test.

    You can't just look at the number, you have to put it in the context.

  • It really confuses me how a result can differ per lab. So a tsh of 6.54 could be different if the NHS took it at the same time? Just because they use a different range? I assumed blood was blood and it doesnt change the result only a different range.

    Confused.

  • I assumed the range was just what the lab considers the norm? But the actual result doesn't change per lab it just has a different range for the norm?

  • If it were that, we wouldn't need ranges.

    Lab methods vary a bit therefore the ranges are like that. Otherwise any doctor could say value of 12 is very good even tho in another lab the range would be 13-23 and there it would be considered very hypo.

    Different ranges give the same average in the end. Not the value itself.

  • Thank you Justines

    I just always assumed a result was a result no matter the lab and they just have different ranges to what they consider the norm.

    Like when you post on here saying your tsh is 5.5 many say that's high but what if your lab range is up to 6.2?

  • Can't compare T4 and TSH.

    Apparently methods do not vary that much.

    Your TSH is high and that's it.

  • The BH doctor commented on my results and he said my TSH alone could be due to non thyroid issues and no mention of T4 or T3 being an issue as within the range. My GP has said I am subclinical and he will monitor me now and if T4 dips they will treat me.

  • Those comments are a bit irrelevant, not that doctors would be clueless, but they don't know you. So they can only comment about the test results not the big picture.

    When I had my test done privately I filled out a form, questions about from weight to possible medication. They asked for morning temperature from 3 days and so on. They gave quite detailed 5 pages explanation of my test results and recommendations. I have used that lab twice, so they were able to see what had changed if anything. Like my iodine was low, but nothing else in neither test backed up the theory of me being deficient they ruled it out. Based on thyroid function and the information I provided they recommended treatment.

    Your GP has to remember the different ranges given for T4. Now he considers it risen and normal, which it would be in range of 7-17.

    I read you are going to get another BH test on March. Then you can properly compare the test results in given ranges as they will be the same.

    Same you can do with your previous tests done in one lab except the one on December that was taken at wrong time. But any test before you can compare and see how much has changed.

    I know it is a bit confusing and takes a bit time to understand these things.

  • Thank you Justine.

    I am going to go with BH because right now I can't get to my GP for a test, due to how fatigued and agoraphobic/anxious it has made me. So I can't get there for the blood tests he woul have to come to me and that means a later blood test when i am not fasted. So it's best to go with BH as I can do that fasted from home before 8am.

    The BH doctor commented and did say I would need a test again in 3 months to re check the TSH. He did say if symptomatic to test sooner. I was tested mid January and thought if I test end of March that's 10-11 weeks later so I hope that will be ok to re test. I just can't carry on feeling this tired every single day, it's making me feel awful. I always focus on it I know which won't help my anxiety but it makes me feel rough. My eyes burn, I feel weak and woozy, heavy eyes I can hardly keep them open and with it highly anxious and low. Aswell as the ground bouncing as I walk feeling. I just generally feel yuk every single day and have to plod on. My GP said this was all due to anxiety and depression as I had been through a hellish time for 3 months with my son being suicidal, which I'd believe if I wasnt fatigued before that happened. I have had bad fatigue since last summer and it has got worse the last 3 months since all the stress I was under.

    Thank you for your help.

  • Yeah , besides your results are consistent in the past so three month rule is not that relevant.

    I guess it is everything going on causing you anxiety. Which is completely normal! But poor thyroid and suffering adrenal glands worsens it. You are worried about your family and your health. Any normal person feels anxiety. Ignorant doctors are not making it any better. If you had their support and sympathy you would probably feel less scared. Now they just undermine you.

    In the meantime they could have trialed T4 and you would already know whether it makes a difference at all.

    That is so sad.

    If the next test is consistent with previous one and your GP refuses to do anything about then you have to find a private doctor or try self medicating. Otherwise they might keep you hanging there for long time until you results are bad enough for them to consider you hypo.

  • So three above bottom of range in first and two in second, so second might be worse.

  • Yes, that's why I thought I'd re test with BH to see if dropped lower than 14 next test then speak to GP again as I am feeling very ill with fatigue and cannot carry on like this. I don't believe anxiety and depression are causing my fatigue because this is totally different to tiredness I have had in the past when I had anxiety and I am only anxious now due to how fatigued and unwell I feel.

  • Your result of 10.2 with a range of 7 - 17 is 32% of the way through the range.

    Your result of 14.2 with a range of 12 - 22 is 22% of the way through the reference range.

    Your Free T4 has therefore actually dropped. This is the reason that people always ask for the range. Without the reference range the result has no context, and is almost meaningless.

  • I understand. Thank you. So on an NHS result it would be lower than 10.2 now.

    My tsh was 2.92 in last nhs test but it was afternoon test. Prior to that in August at 9am it was 5.35 (0.35-5.5) then 6.54 with blue horizon last month. Range 0.2-4.2.

    Thank you.

  • If you had done an NHS test and got a result which was 22% of the way through the reference range it would have been 9.2 in a range of 7 - 17.

    As far as the TSH is concerned, if the conditions were very different between two tests then they can't really be directly compared. But a TSH of 6.54 is high by any standards (except those of the NHS it would seem).

    Since you are symptomatic I would expect a compassionate doctor to give you a trial of levothyroxine for a few months.

  • I asked and he said as my t4 is in range he couldn't because that could actually make me over active if my body is still producing thyroxine itself. He said it's netter to wait for the t4 to show problems because otherwise thyroxine when given can have the opposite effect.

    Is tsh alone not a reason to start thyroxine? Because he and the bh doc both said other things can effect the tsh result.

    I am worried its why I am so fatigued daily and my life is a living hell feeling this unwell but I have tried 3 doctors now and only this one is keeping an eye on me every 3 months. The gp I spoke to last month said there was nothing wrong with my results and told me basically no need to be re tested ever again.

  • He's talking a load of bull****

    I was given a trial of levo by my doctor when I was highly symptomatic and my TSH was just under 6 (and was above the ref range).

    I hated levo, felt awful on it, and didn't stay on it for very long, but it gave me the spur I needed to treat myself.

    Have you ever read the NICE Clinical Knowledge Summary for subclinical hypothyroidism?

    cks.nice.org.uk/hypothyroid...

    You could read the bits relevant to you (click on the tabs on the left hand side of the page to find them) and print them out to show your doctor if you think it would be helpful. There is nothing in them that bans him from prescribing levothyroxine for you.

  • Thank you I shall have a read.

    He said to me and my husband that as my t4 was fine I didn't need thyroxine as taking the medication could send my hyperthyroid if my t4 is working fine. It all confuses me. He said this is why they don't prescribe thyroxine unless the t4 is struggling along with the high tsh result.

  • The way doctors talk you would think that levothyroxine was dangerously explosive rocket fuel.

    If anyone was to take too high a dose of thyroid meds of any kind - T4, T3 or NDT - they wouldn't stay on too high a dose for very long because they wouldn't feel well!

  • He said as I suffer anxiety if I ended up hyper it wouldn't be fair to me to put me on a trial as my anxiety would worsen if hyper. He doesn't think I can by symptomatic as my t4 is fine.

  • If you look under the Emotional heading on this page :

    hypothyroidmom.com/300-hypo...

    You'll see that anxiety is a known symptom of being hypothyroid. If you get treated adequately your anxiety may improve.

    And as for being (or not being) symptomatic if T4 is in range, he's calling you a liar, which is something doctors do to women all the damn time, and it makes me so angry. We, allegedly, don't know what is real and not real and have to be told by a doctor that everything we think is rubbish, and we should stop worrying our empty little heads about everything..

  • Yes basically that's how they make you feel.

    He seemed sure if t4 is in range my symptoms are not linked to hypothyroidism and other factors like stress can effect tsh. He said he will monitor me in the mean time though. I guess the next test will be the decider for me of what I do next.

  • My husband just worked out on the NHS test for tsh of 5.35 my % was 97% and recently on bh test result of 6.54 range 0.27-4.2 it's 159%. He worked it out that difference would make my tsh 8.5 on an NHS result. Is this right? And my t4 9.2. So is it best I have an NHS test next or stick to BH? I can't get my bloods done early enough on the NHS it's always later in the day. My last result was BH last month.

  • If you can only get tested later in the day at your surgery it isn't really going to help you. You are likely to get lower TSH results that won't help your case.

    When I want an early test on the NHS I take my blood test request form and I go to my local NHS hospital. They have a walk-in phlebotomy department - no appointment needed. It still isn't amazingly early (they open at 9am) but it is better than an appointment at my GP surgery.

    Have you ever tried this?

  • Hi

    That's the problem. He did my bloods in December from my house at 1pm and my tsh was just under 3 so he said i was fine.

    No our nearest hospital that does walk in is half an hour away and at the moment I have horrible anxiety and panic attacks so going to get blood taken is a nightmare for me. It's why my gp came to your house.

  • It confuses me because surely a result is the same no matter the labs range? If my tsh is 6.54 with blue horizon does that mean if I had an NHS test the same time it would be different?

  • No, because they use different machines to analyse the blood. The range is attached to the machine. It is complicated, but the end result is that you have to take the range of the machine used by the lab that analysed your blood into consideration.

    TSH is different because the machines Don't vary very much. So, although the ranges are different, high is still high and low is still low. Your TSH is high by anyone's standards. And your FT4 is low in both ranges although the numbers are different. I totally agree with Justina.

    Your doctor is talking codswallop. He really doesn't know anything about it. Your FT4 hasn't raised, it does not indicate good conversion - how the hell could it - he has to look at the FT3 and compare it to the FT4 to see how you're converting. And, it is low enough to cause symptoms. I can't seem to find anywhere where you've mentioned your FT3 result. Anyway, he might be nice, but he's still fobbing you off, I'm afraid.

  • Ok thank you that explains it a little more.

    My FT3 with Blue Horizon last month was 5.2 (3.1-6.8) FT3 was 14.2 (12-22) antibodies were all normal.

    The BH doctor said my t4 was fine and that it was only the tsh raised and to just re test in 3 months or sooner if symptomatic.

  • You have got to stop taking everything a doctor says as gospel! They have no idea what they're talking about when it comes to thyroid - and not a lot where some other things are concerned. Just because a doctor says it, doesn't mean it's true. :)

    For example, very often they will only test the TSH and say that that is the only test that needs doing. Now, here, your TSH is raised so they're saying, oh, TSH isn't the only thing to take into consideration! They make it up as they go along. They are just loath to diagnose thyroid for some reason, that's all. We know better! :)

  • I do wonder why they don't seem to want to treat patients struggling with thyroid symptoms and obvious test results though. I mean mine is over range and they still say they wait until TSH reaches 10 and T4 is working fine so no need for thyroxin at this stage. Yet my ferritin was 15, range 15-150 and they said I needed treatment as it was very low. Why diagnose something else so easily when it is just within range but not something that is over.

  • I think it's all down to Big Pharma. BP makes a fortune out of selling drugs to treat our symptoms, so they Don't want doctors to be able to treat thyroid correctly. I know some people think me a cynic, but it just seems so obvious to me. BP control what doctors learn in med school, so it's no Wonder our doctors are so ignorant. All they know how to do is read off a computer screen and write a prescription for a dangerous drug. And it's very easy to manipulate their understanding of results. Sad world we live in. :(

  • He sounds like a total genius.... How could he tell, just from looking at your free t4, which is in range, but probably somewhere near the bottom, that you were converting it into t3 ok? if your free t3 was low, this would make your tsh rise. Not sure that stress would increase your tsh directly, though it might stop you converting t4 into t3.

    If i was you, i would be monitoring my temperatures, do them 3 or 4 times a day and plot the average... More details on a previous post of mine... healthunlocked.com/thyroidu...

    And i would get an adrenal stress test done if the plotted results are all over the place and not in a nice straight line.

    You could do with your free t3 measuring, because that is the only way to tell if you have enough of it. There is nothing borderline about a tsh of over 6.... It has risen because you are short of thyroid hormones. Have you had antibodies measured? The thyroid could be struggling and so its having to be driven extra hard..

    What did the Blue Horison results say about free t3 and antibodies?

    g x

  • My t3 was 5.7 so well within range. I tested negative for antibodies.

    My gp saw all these results.

    Thank you.

  • Ok, so free t4 was bottom end of the range, but free t3 was top end of the range with a raised tsh.?

    Hmmm. That rather sounds like there might be an issue with too much reverse t3?

    Heres a link to the adrenals and rt3 website.... They are great at this sort of thing..... rt3-adrenals.org

    Xx g

  • The ft3 was 5.2 sorry. Range I think 3.5-6.5 ish. So I'm guessing 5.2 is fine.

    T4 was 14 range 12-22 buy on nhs test I'm December it was 10.2 range 7-17. So it's gone up regardless of the different ranges surely?

    Thanks I shall take a look.

  • Well, the FT3 is only just over mid-range, so not very good. But, I agree with galathea. If you have high rT3, it will be blocking the receptors so that the FT3 can't get into the cells. Therefore, it looks reasonable in the blood, but you feel awful because it's not getting into the cells.

  • there are also people who have normal labs and are very hypothyroid because they have cellular resistance and people with hashi's, once treated, lower their antibodies, also can have normal labs and terrible symptoms. The doctors are just not taught about it and i wish they would stop acting like they know it all.

  • I still think you are far from fine, and you need treatment. Just because you are in some spurious range, doesn't mean you are at your optimal level.

    All of your symptoms are likely to be hypo symptoms, and you adrenal are just going to get worse until that is addressed.

    Sorry, but I think you are being badly let down

  • Thank you Harry.

    Myself and my husband really did address our concerns and the adrenals and he said that at the moment with a good T4 level I am making thyroxin fine and it's being transported around the body, or whatever he meant. He said TSH alone is not a reason they treat with thyroxin, he said if he did and my T4 is fine then it could actually put too much thyroxin into my body which could be a bad thing to do and make me feel worse.

    I could understand what he meant for sure but it doesn't address why I feel this fatigued daily. It's getting me down and it's why I have anxiety and depression. Feeling this fatigued and balance off is horrible.

    I am being re tested end of March, and I am going to go with Blue Horizon again because what Justine has said has confused me a little. I asumed a result is a result no matter what lab you use, so I assumed my T4 being 10.2 on an NHS test in Decemeber and being 14.2 with BH last month was a good rise. I also saw my TSH was higher on the BH result but now I am confused about how ranges effect the actual result as I assumed the ranges just differed per lab depending on what they consider to be the norm, but I must be wrong in my theory. It is confusing.

  • The ranges vary depending on what type of test kit they use too. So you need to look at where you are in the range, you can work it out as a percentile.

    But I still believe he is wrong.

  • I was just a little confused that I can't compare the NHS test to the BH test. If my TSH was 5.35 on NHS and now 6.54 on BH test I don't know if to trust that it has actually risen. If you see what I mean.

  • Whichever range you use, it's too high. The policy of not treating til it reaches 10 is absolutely barbaric.

    It has been shown that a truly healthy person has a TSH of around 1.

  • I totally agree it's too high, so did my GP. He said that the fact my T4 was now 14 that was good and until that drops there isn't a reason to treat despite my crippling fatigue daily. I know i am anxious about all of this, I worry daily why I feel so terrible and tired but it's the fatigue making me anxious. My GP thought I was exhausted from all the worry but I know it isn't. I have never ever felt this drained and exhausted in all my life. I feel half dead right now and I can barely do anything. At 36 this isn't normal.

  • No it isn't normal. You need treatment. My FT4 was that low & I was half dead.

    Sorry, I've said it before, but you will wait forever for these people to help you! This is your life, you can choose to make it better

  • Thank you Harry. I am going to hold out for this next test at the end of March. Iw ill go private again and then compare it to my January results. My GP said don't re test too soon but hopefully 10 weeks between tests will be fine. The BH doctor said 3 months but sooner if symptomatic.

    My FT4 was 10.2 on the NHS in December, result was from a test done in the afternoon and TSH was only 2.9. So wrong time of day. Private T4 is now 14. I was very confused by this as my T4 has always been around 10 on the NHS.

  • he cannot tell by a free t4 level, if you are converting..you would need a free t3 level also. I don't think he is very well educated in thyroid, not even testing you for autoimmune thyroid.

  • My FT3 was 5.2 (3.1-6.8). My antibodies were normal.

  • what people are trying to say , is that the doctors have these ranges that they follow, which does not work. You are ill and should have been treated a long time ago and haven't been. In the US, you would have been treated. i believe that you are too over reliant on what your doctor thinks, when they clearly have no clue about how to properly treat this. When you are desperate enough, you will realize that you have been improperly treated. There are plenty doctors out there, that do not believe in the approach these doctors are taking. I am not sure what blue horizon meant by their non thyroidal illness comment, but you should contact them for further explanation. I trust no doctor anymore.

  • I will ask them. Thank you. Their doctor said my tsh was elevated but that alone doesn't mean I have hypothyroidism but to read test in 3 months or sooner if symptomatic. All other results were fine. Bh did a full thyroid panel.

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