Levo for 12 months now told to stop it!!! Help please :-(

Some of you may remember I posted about a month ago about seeing a clueless GP (himself Hypo) who said he'd refer me to an Endo. I found one who sounded OK although his profile states "I do not prescribe or endorse non-conventional treatments for thyroid underactivity (e.g. animal thyroid extract)".

I have today received a letter from him saying that I was extremely borderline when I started treatment so the reason why I may not be feeling well is because I am getting side effects from the thyroxine.

Results:

10.12.12

TSH 3.50 (0.4-4)

Thyroid peroxidase antibody 1539.0 (0-50)

12.3.13

TSH 4.76 (0.4-4)

Free T4 15.1 (9-25)

NO thyroid rx (Dunno what this means?)

Thyroid antibodies 1384.5 (0.50)

In the meantime I managed to see Dr Skinner who was of the opinion I was hypo and suggested I was started on levo.

My latest results are: (I had taken my levo that morning)

13.2.14

TSH 0.33 (0.4-4)

Free T4 17.8 (0.25)

Free T3 3.7 (2.8-7.5)

Antobodies 1170.0

This Dr (a Professor of Endocrinology) has said " to evaluate whether you do have a thyroid disorder or not it would be helpful if you stop all thyroid hormone replacements with immediate effect then when I see you in my clinic we can repeat the blood tests and evaluate fully whether any thyroid treatment is necessary".

To be honest I am speechless. It took me ages to be diagnosed and now he's telling me there's nothing wrong with me? I would dearly love him to be right but I know he isn't and am very disheartened that a Professor of Endocrinology is ignoring symptoms and relying on a blood test.

I don't see him till September and really don't want to go without my medication for that long.

I would be really, really grateful for some opinions and advice please as I really don't know what to do. Thanks in advance

25 Replies

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  • Most of the conventional Endocrinologists have the same viewpoint. This is a link to a video (voice only) of one of the Top Endocrinologist who keeps getting Awards for his Papers. In other words if your TSH doesn't fit the criteria, we are suffering from Somatization Disorder (whatever complaints we have - it's real) but not connected to the thyroid gland.

    vimeo.com/album/2924237/vid...

    You may have to see another private consultant. Email louise.warvill@thyroiduk.org.

  • Infomaniac, I think you've copped a mad professor. Your elevated antibodies and low FT3 will be why you don't feel well. You need T3 in addition to T4.

    Rx means prescription.

  • I'm still listening to the video Shaw's...he is at least thinking outside the box a bit but up to now he's basically saying it's all in our heads.

    Clutter-you have suggested self medicating before to me and I've always cried off. I really don't feel confident enough to do it but now I'm thinking do I have a choice when the top bloke in my area has his head up his behind?

    Honestly I just feel like crying and don't know where to turn.

  • Infomaniac, when is your appointment? I wonder whether 4 weeks would be long enough to demonstrate to this fool that you have thyroid issues. Cancer patients come off Levothyroxine 4 weeks prior to RAI and are prescribed T3 for two weeks prior to RAI to enable their TSH to rise >30 for uptake.

  • It's the 22nd of September!

  • Info, I wonder whether it's worth posting another question asking people with a thyroid how much their TSH rose when they had to stop thyroxine for 4+ weeks?

  • Sorry Clutter I'm a bit confused? Who would have to stop thyroxine? Would that be people with Cancer?

    I am really loathe to do as this endo is suggesting. I was expecting more medication not less!

  • Infomaniac, I assumed you would comply and was trying to work out whether 4 weeks would be long enough for your TSH to rise and demonstrate that you are hypothyroid.

    I know 4 weeks is enough for thyroidless people but I don't know whether it is the same for those with thyroid. It takes up to 8 weeks for the last trace of thyroxine to leave your system.

  • That is awful! Your T3 is right at the bottom of the range despite you taking thyroxine. Clearly there is an issue! If he is a professor of endocrinology he should be able to see this!

    Your antibodies are also very high. Clearly you have a thyroid problem.

    The problem is, of he really wants to evaluate how your thyroid is working, it will take some time for your TSH to settle down one you so the thyroxine. I'm not sure if it takes that long though!

    You could do it and if you become much worse, go to your GP for blood tests. You might find your results show hypothyroidism clearly. If you feel too bad you may have to go back on the thyroxine before your appointment . That may not be the right course of action though so I am reluctant to advise you do that :(

    I'm sorry you are having to go through this. Hopefully your results will come back showing clearly that you have hashimoto's and need NDT or other combo therapy.

    Remember we are here for you, whatever you decide to do xxx

    Carolyn x

  • Thanks Carolyn. I have always said that I am not half as bad as some people on here-for example I am always hot rather than cold, I am not particularly tired (even though I don't sleep well) and manage to do what I have to do.

    My problems began with constipation and gradually my hair began to suffer, like wise my skin, then brain fog, constipation, depression etc kicked in. My temperature has always been low (in the 34s) but in the last few weeks it has increased to the high 35s and I have got round to thinking I don't feel too bad at the moment. My constipation issues are better, my hair has improved (though is no where near what it was), my moods are better though I still have my moments and though I feel OK, I still don't feel 100%. I cannot bear to think that if I stopped taking levo I would go back to square one. I really, really could not stand for my hair to become as thin and lifeless at it was.

    My antibodies worry me to death as well. I don't think I've ever read of anyone on here having them as high?

    Do you know how long it takes to get Levo out of your system?

    From hating every single tablet I take I am now desperate to hang onto the little critters!!! Who would have thought it!

  • It does take a few weeks to get out of your system and a bit longer for TSH to come back up.

    This must be a really hard decision to make. I couldn't imagine having to go back to feeling so horrible :(

    Let us know how you get on. Keep fighting!

    Carolyn x

  • I really am unwilling to do it. I think I will write back to him giving him more background and see what he says.

    I think I may be joining the ranks of the self-medicators :-(

  • I don't blame you :(

    Maybe if you explain your symptoms before treatment and how much they improved, he may listen. It may be that you need to see a different doctor.

  • Go for it infomaniac - I have never looked back!

  • You mean self-medicating TSH110? What do you take? I would love to try T3 but really feel out of my depth :-(

  • Yes infomaniac, I gave up on levothyroxine after 3 years as I never felt properly well on it. I take ThyroidS (NDT). I did a gradual swap from one to the other following the Thyroid Patient Advocacy guidelines. I thought heck I have nothing to loose and pulling back if things did not suit would be easy to do. I am afraid I am not well up on self medicating with T3 but expert people on the forum will be able to advise.you on the best approach.

  • They all seem to be tarred with the same brush! I thought the one I'd chosen sounded good but it seems not. If I am borderline surely the antibody issue needs addressing in some way?

  • Hi Infomaniac, I stopped my thyroxine for 3 weeks, worse mistake ever. Been back on now for 4 weeks and still very ill. My test results on diagnosis were borderline like yours, tsh 4.27 ft4 13.9 but so ill could not function at all plus all usual hypo symptoms. Gp dismissed thyroid problem saying to was "depression" then "cfs".

    Finally diagnosed by Endocrinologist been on thyroxine for a year but have steadily been going down hill.

    Went gluten free and stopped thyroxine as was fed up with slowly feeling bad again but blood in range.

    For 10 days felt brilliant, back to normal, my old self, loads of energy. Thought I'd cracked it and gluten had been my problem all these years.

    After 10 days all my symptoms came back and unable to function at all. Fortunately I had bloods taken just before I stopped as I was due my endo appointment soon. I now have to increase my dose and may have to go on t3 hopefully. 4 weeks back on thyroxine and I still am so fatigued. Raising dose and changing brand are all playing havoc a bit but I feel very fortunate to have a good endo as my gp, soon to be no more, was useless.

    I do hope you don't have to stop and go through what I am now going through. I feel that stopping has taken me back to square one and I wouldn't advise it to any one.

    Btw my tsh rose and ft4 dropped when I stopped for them few weeks.

  • When I was diagnosed with Hashimotos with High Anti-bodies ( similar to yours ) all the other results were in range - TSH FT4 FT3. The GP still prescribed T4 in a small dose to begin with - in her words to support the thyroid whilst under attack. That was back in 2005. My medication has changed over the years and I am now T3 only. T3 results always on the floor. I think there is some link to people with Hashimotos and conversion issues. Possibly due to LOW Iron - Folate - Ferritin - B12 - VitD

    How is your digestion and do you have gut issues ? Auto-immune issues often start with problems in the gut. Important to heal it if at all possible.....

  • The one thing you must NEVER do is take your thyroid meds for 24 hours before a thyroid blood test or you land up with results like that

    Its clear from previous results that you are hypo and have Hashimotos

    In your shoes I would be ignoring what he says till a week before your appointment

    but has your ferritin , folate and B12 been checked because if they are not optimum you cant utilise the levo

  • Hi everyone, after a blood test last year I was told my iron levels were borderline too high but later the same year my GP (who has sadly moved away) did a whole battery of tests and all my levels this time were "normal". I take Vit D3 supplements and make sure I have a couple of Brazils every day. B12 is a bit of a problem. I started taking it but developed horrendous acne and am still bearing the scars over a year later. Just recently I have started taking the odd one and I've been OK so will keep doing that...maybe I might develop a tolerance! I have had dreadful digestion for ages but since going gluten free it has improved. I have a much better diet these days too.

    I am going to write to this guy telling him about my antibodies and say that I thought the protocol was to prescribe Thyroxine to stop them getting any worse and because of that I really don't want to stop taking it.

    I have moaned on about Levo for ages now but just literally in the last few weeks it has dawned on me that other than my weight, I don't feel too bad, and as my temperature is improving I felt I might have turned a corner...and now they want to take it off me! Bloody Sod's Law isn't it?

  • Be very careful. Seriously.

    Between 2010 and 2012 I was on T3 only. This was a disaster as the endos who were ‘treating’ me had no idea how to dose it and would not give me more than 20mcg in case I went hyper. The result was that I went very very hypo, put on three stone in two years, lost half my hair and had a rake of hideous hypo symptoms. I was then told that my liver was ‘under pressure’. I now know that I was probably getting poor LFT results because I was so very hypo, but anyway, the endo didn’t seem to know that and said I should come off the T3.

    I weaned myself off it over a couple of months and two weeks after I stopped it finally, from a suppressed TSH and top of range FT3 while on T3 only, I measured TSH 4.2(0.35-6) FT4 10(9-26) FT3 3.8(2.8-7.1).

    I went back to my next appointment thinking we had baseline figures and I would go back on medication (probably thyroxine, which I had never properly tried). Instead I was told all my results were normal, I was not hypo, I had never been hypo and they had been treating me in error for the previous two years!

    It was another eight months before I got back on treatment (thyroxine) and I am now well.

    If you have fought for treatment, got it and now feel better on it, I would think twice (and probably twice again) before giving it up.

    Kind regards

  • Thanks for that Anstey...a cautionary tale indeed! It never ceases to amaze me how utterly inept a lot of endos are. We have to place our health in their hands and they haven't a clue. No wonder people self-medicate! I'm glad you managed to get yourself well again though.

    I even got to wondering last night if maybe this guy was right and I'm not Hypo-but I know I am, sadly so I'm not giving up my medication any time soon. Change it for something better, yes, but stop it, no!

  • It does make you doubt yourself, but then you just have to go through the checklist again and remind yourself that the symptoms may be non-specific, but the signs are diagnostic and we have no control over them.

  • I have just checked received Louise's email with recommended endos ...and lo and behold mine is on the list! Maybe he's not as bad as he seems?

    Can anyone tell me what happens if in the worst case scenario, the appointment turns out to be a waste of time. Can you ask to see someone else?

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