Should I insist on a levo increase?

I posted on here a few weeks ago about my aching arms, hands, wrists shoulders (which I've had for about a year (I've been on 100mg of Levothryroxine for 2 years).

OK, so I went back to the doctor about 10 days ago. The good news is that he didn't make me feel rushed this time and he examined me thoroughly and asked lots of questions... However, he showed no interest in my suggestion that either Levothyroxine could be causing my symptoms (I pointed out that muscle and joint pain is a side effect, listed on the patient info leaflet). I also pointed out that my symptoms were also a common sign of hypothyroidism and that I'd read lots of similar stories on this forum of people with muscle and joint pain even thought their blood results are "normal". I suggested it might be a good idea to experiment with adjusting my dose of thyroxine for a trial period but (surprise, surprise) he said I was on the standard dose and there was no need. Anyway, at least he did agree to do another blood test and included ferritin in this at my request. I'd pointed out that my ferritin levels were low last time (17mg/L - range 15-300) but he said they were fine (and wouldn't give me a supplement) but he'd do a test to make sure they weren't dropping.

Anyway, the results are back and are as follows:

Serum ferritin = 30 mg/L (so a bit better than before)

Serum TSH = 4.22 mU/L (0.35-5.00)

Free T4 = 15.6 pmol/L (9.0-19.1)

(There are others but I'm not sure which ones are relevant here. I've been on Vit D supplements since May - again after I'd insisted on a test. Levels have gone up from 10.7ug/L in May to 41.4ug/L in Sept.)

But it looks as if the TSH level has crept up from 0.42 in January 2012 and 1.02 in May. Is the latest level high or what? Could it account for the 5lbs weight gain since July? Could this also explain my arm pains? I'm not sure as I've had them for over a year but a year ago, as you can see, my TSH was much lower.

I know my GP won't adjust my thyroxine. I didn't even ask about another type of medication. He has referred me back to the rheumotologist but I have doubts that will achieve much.

I've started self prescribing Vitamin B12 and also now magnesium supplements but, other than that, I'm not sure what to do next other than start trying to educate the GP with some literature to persuade him more firmly to adjust my thyroxine or try another type. (I can't help thinking he won't give on this though, judging from the problems others have had). I feel that an evaluation of the latest blood tests from this site would be good idea first though so any feedback on that would be much appreciated.

I'd also like to know about any private local doctors who can maybe help.

12 Replies

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  • Simple answer is yes, insist on the dose being upped, if you feel rubbish now, when you felt better before when your TSH was lower then you need more, and tell the doctor there is no such thing as a standard dose!

    By NHS standards your TSH is not high, but it should be reduced to what is acceptable to your well-being and not whats an acceptable lab number.

    Cant help with private doctors, I've never seen one, they are well outside my financial constraints, and likely a bit of a waste of money for me as I have a phobia of doctors and avoid them at all cost :P

  • Dr Toft's book quite clearly states that the TSH could be as low 0.2 and so long as the T3 is 'unequivocally normal' most patients will feel well, with a few exceptions (his words not mine). This book is published by the BMA AND the family doctor association! ('Understanding Thyroid Disorders' by Dr Anthony Toft) I don't agree with everything he says but page 88, 'judging the correct dose of Thyroxine' is very persuasive.

    There is a big red box on the same page which says (in capitals) 'Thyroid blood tests should not be interpreted in isolation and correct medical care will also depend on careful assessment of symptoms and clinical examination' i.e. figures are not the be-all and end-all that many doctors think. My own doctor kept saying to me 'You can't argue with science' but a look at this page convinced him to at least try a dosage increase.

    If you can get the book and show him these figures, also making the point that in January when your TSH was 0.42 you felt OK, then if he still refuses to adjust your thyroxine, that's the time to consider private if you can afford it. I couldn't afford private either, which is why I bought the Dr Toft book and brandished it in front of him, he wasn't happy but there it was in black and white!

    I agree with fedupsusie - how can he possibly talk about a standard dose! The thyroid can lose function gradually and to varying degrees - does he really believe that one dose suits all?

  • Hi You could ask to see and endo. If not possible, have you tried to get your FT3 tested? You may need T3 treatment on a script. If you can prove your FT3 is low,or low in range this should help. It is possible to pay for tests through TUK site, bloods, if you use Blue horizon, quote TUK`10 for a £10 discount. Their lab TDL is well known to doctors which is very important. Good luck with sorting out the GP.

    Jackie

  • Hi again, I meant to say. My Gp, in spite of many serious conditions, insisted on a repeat test for Ferritin after a year of it being very low , before treating it!!

    Jackie

  • Yes your TSH at 4.2 is obviously way to high for you, hence the return of your hypo symptoms. Are there any other GP's in the same practice that you could go and see. I had to try 3 GP's at my practice before I got the right one. I find the older GP's are sometimes the best as they can still remember when they used to diagnose and treat thyroid patients by symptoms and not blood results.

    Have you looked at the hospital section at the top of this page for a good endo in your area, its quite useful to find out what other thyroid sufferers experiences.

    Also here is a link to the main Thyroid uk site regarding private doctors.

    thyroiduk.org.uk/tuk/diagno...

    Moggie x

  • You can email Louise.Warvill@ThyroidUK.org and ask for a copy of the Pulse article with answers from Dr Toft which you can show to your GP.

    Otherwise this is a list of where private doctors are and at least you know they will be sympathetic.

    thyroiduk.org.uk/tuk/diagno...

  • Not only is your tsh way too high, it is putting you at risk of heart problems. - well it is according to the society for endocrinology, in their press release of April 2010. - or does your doctor think. he. knows better? Ask him. If you increase you dose and feel better you will run out of meds early..... Is he then just going to leave you with no meds? IsnT this putting you at more risk? I would be testing that theory out.

    Here is the soc for endo. Link. endocrinology.org/press/pre...

    G x

  • Dearie me. I think if my TSH ever reached the heady heights of 4.2 I'd be on my deathbed. Everyone is different and needs to be treated to feel better, not to their TSH level. Also, 100mcg is not a 'standard' dose. I'd say it was a rather low dose.

    It's all very well us all writing this, but its tricky for you personally to persuade the doctor to increase your dose when (s)he is adamant you don't need it. Hopefully some of the links posted above will help. You could always push for an endocrinology appointment, or just get the GP to call them about it, as they can be a little more switched on. However, as we see to often here, maybe not enough.

    Good luck with it all. I think you'll find you improve massively with a small dose increase. I did.

  • I was told my results were normal as my Tsh was 4.07 I literally cried when I walked out of the surgery as I thought I couldn't go on after all I was being told everything was normal.Only after finding this forum and posting my results everyone said the same as they are here go back to your GP.My GP upped my Levo by 25 mcg I still have off days but not like when it was so high.

    I'm no expert but speaking from experience you need to go back.

    Good luck I hope the increase bodes well for you xx

  • Agree with everyone, your TSH is too high and you need an increase. Your fT4 doesn't look as bad as your TSH would suggest so I'd recommend checking your fT3.

    Your ferritin is still too low. It should be at least 70. Don't worry about the doc not prescribing for that, the capsules you can buy over the counter are better. My ferritin was 16 last January and I felt terrible. Once it was up to 52 I felt an improvement, then 118 felt really good. Loads of nasty symptoms disappeared. Ferritin is extremely important for feeling well in my experience.

    I take Puritan's Pride "Easy Iron" and am very happy with it. I took up to 4 capsules a day while getting my levels up and now take 2 to keep them in the 90-120 range.

    koala

  • Kaola, Thanks for this. What iron supplements do you recommend for my ferritin levels? I did suggest to the GP that maybe we should be aiming for the upper end of the range (as I'd read it somewhere, maybe on here) and he said no!

  • please explain what is ferritin and what does it do ?

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