Hashimotos & GP's

Just wondered why those of us that have Hashimotos or have had our thyroid removed for whatever reason, have problems with our gp continually trying to reduce our strength of levothyroxine. Our thyroids are non fuctional and will never work again, therefore we must need quite a high dose of Levothyroxine, as the pill is our only source of the hormone now.

If you have had a complete thyroid removal, is it possible to control a patient with just 25/50/or 75mg of thyroxine, surely those lower doses are for patients that still produce some thyroxine themselves.

I am on 125mg levothyroxine but feel I need a bit more maybe 150mg. I have been called for a review blood test, which I am ignoring. Last time I had a blood test the practice nurse wanted to reduce me to 75mgs! The locum let me stay on 125mg, I really don't think my surgery knows what they are doing. The practice nurse seems to see everyone I wonder if a permanent doctor actually works there anymore!

32 Replies

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  • Some time ago I created a spreadsheet using information from various sources about how medics can estimate how much thyroid hormone (levothyroxine only) will be required post-total-thyroidectomy. This is it:

    dl.dropboxusercontent.com/u...

    The document includes links to the sources used. And please read the words!

    However, it must be admitted that the world of thyroid is very odd. For example, struma ovarii:

    en.wikipedia.org/wiki/Strum...

    And regrowth of thyroids after removal.

    But you would rather hope that the very fact that the patient needs less than expected might make them look for issues such as these rather than simply cut the dose. Wouldn't you?

    Rod

  • ha you are taling about common sense, that doesnt happen in the field of medicine. GPs think we know nothing about our bodies.

  • That is so true - the arrogance of GPs is astounding. They seem to think you need a particular gene to be able to read and understand medicine! The trouble is, 'dumbing down' is affecting med school graduates, as well as A-level school kids.

  • I have previously had good health and have just been diagnosed with Hashimotos and the most shocking and stressful thing about it is not the diagnosis itself but the 'attitude' of doctors to me - it has been an eye-opener. You are so right - arrogance aplenty - to name but the tip of a literally dangerous iceberg!

  • I have had a TT for cancer and was initially on 300mcg ended up on 225mcg as I was told you need less as you age. I asked for evidence of that but was given nothing. I have difficulties understanding that anybody is OK on 125 if you have no thyroid unless you are tiny even if you don't have to be on a suppressive dose.

    Roslinxx

  • At least one of the formulas in my spreadsheet includes age as a factor.

    I too wonder at the ranges that people seem to manage on. But at least a few per cent could simply be variation in absorption, a few more per cent in how effectively you recycle thyroid hormone, etc.

    But there is nothing as weird as the world of thyroid!

    Rod

  • ....guess this is why GP's find it so difficult to treat when there are so many variables. Thank you for your earlier post....

  • I would like to know why they consider you need less as you age. Maybe because they assume you will be sitting in a chair looking miserable and waiting to pass on to the great care home in the sky! It is a kind of self-fulfilling prophecy - reduce the thyroxine, and people start sitting around vegetating.

    Just because many older people have lower thyroid function doesn't mean it is a target to aim for! What it probably really means is that they would benefit from some thyroid hormone replacement.

  • Can't agree more

    Ros

  • I was initially on 125 and this was reduced to 100. A second opinion doctor (one I trusted more) said its also calculated on your weight so was approx. 10mcg for every stone ( I'm 10st 2). He also mentioned that if you are over on the amount of replacement thyroxine (the one that I am on is levothyroxine) then it can put a strain on your heart.

  • Brennan,

    The calculations (as in my spreadsheet, above) vary. Indeed, it contains five different formulas which might well produce five different answers. The more recent formulas have been developed because the older formulas were found wanting. Further, the formulas are all aimed at making a best guess to minimise any period of hypothyroidism - and none claims to be the final dose people will need.

    Doctors seem incredibly aware of the issues of over-dosing. But they can be incredibly ignorant and naive about the issues of under-dosing. Here is one short article:

    thyroid.about.com/cs/sympto...

    The only aim should be "right dosing" - not risking under- or over-dosing.

    Add onto that the fact that TSH can be, and often is, an unreliable measure for assessing proper dosing,

    Rod

  • Hi Brennan

    As I said above I was on 300mcg for 20 years. At that time I weighed 75 kgs (those were the days)and I was told I had to be on a suppressive dose. I have no heart problems, and I have had the odd panicking Dr over the years doing ECGs which have been fine. Not until I was persuaded to start reducing have I had ectopic heart beats. When my thyroxine was adjusted after surgery it was done on symptoms as I think at that time blood tests were unreliable. It sounds like I was lucky that I had my thyroidectomy at that time.

    Roslinxx

  • If you had your thyroid removed, which sounds well serious, why don't they refer people to an Endo so they can receive more effective treatment by a specialist. I'm knew to all this, and the impression I get is that GPs are just guessing ! You have to fight for your blood tests, fight for the right meds, get it right, then a different GP will change it. Arghhhhhh.

    Scares the hell out of me. Stop the world, can we get off ?

  • I agree with you, I was under an endo (Prof Toft) until he retired and they felt that I had been stable for so long I could be managed by the GP. They promptly started tinkering with my meds and was at least partly to blame for my "crash". Should never trust a GP really.

    What can you do ?

    Roslinxx

  • Did he also mention that people die from heart attacks caused by under-treatment with thyroid medication? Probably not.

    As Helvella says, you want to be on the right dose.

  • It was good to know I'm not on my own. I had a thyroidectomy in 1989 and have had my thyroxin reduced from 200 mg to 75 mg by my GP. Like you I think I should be on about 125 mg but my doctor takes the blood samples as gospel, regardless of how I am feeling. I'm in the process of getting a private consultation with Dr Simpson but at the moment haven't been successful in persuading my GP to do this. However, persistence is everything. Good luck.

  • Dr Hugh Simpson by any chance ? If it is he's very good :-)

  • So if you chop off a hand it will grow back? This thing about the thyroid growing back is something I find extremely difficult to believe. I asked my endo why I would need TSH when I have no thyroid and he threatened to discharge me!!

  • Difficult to believe it may be, but widely reported it is. For example, from 1951, a surgeon's paper:

    ncbi.nlm.nih.gov/pmc/articl...

    You may note, it seems far more likely in Graves' patients than Hashimoto's.

    Rod

  • I found this most interesting, because it explains what happened to me, due to Graves'.

    I had always thought I was unusual, but apparently not. I was actually very good for about 12 years after my subtotal thyroidectomy, but then the regrowth led the thyroid to be out of control again. Hence the second and total thyroidectomy.

  • According to a scan a few years ago my thyroid has grown back, but the endo said he very much doubted that it was working properly though. As I am still on 75mcg Levo and nothing has changed, then I am pretty sure this is right. Janet.

  • I had a subtotal thyroidectomy at age 18 and by the time I was 30 it had grown again and I became thyrotoxic again. I suspect that if they had left any thyroid cells in at all the second time it might have grown yet again!

    Interestingly I asked my doctor why he kept checking the TSH when I have no thyroid to stimulate! He looked at me as if I had just landed from Mars.

    If people's lives were not so badly affected it would be pitiful.

  • I suppose checking TSH is a way of discovering what your body 'thinks it's getting' in terms of thyroid throughput. ie:What the treatment is feeding through your system?

    [Even though there's nowhere for it to go!]

  • Hi I have had a tt im 35 weigh 9. 5 -10 st and im on 75 mcg a friend of mine is around the same age and build and she is on 300mcg!

  • Be careful. You may think you need your levo increasing because of continued hypo symptoms but it could be a case that you have too much t4 hanging out in your blood due to non-conversion to t3 or non-absorption into the cells. This can cause reverst t3. If this is the case your may need to decrease (or stop for a while) your t4 and add in some t3. Reasons for this happening can be cortisol or iron issues.

    stopthethyroidmadness.com/m...

  • I totally agree, I don,t think enough is known by gp,s so bloods are taken all the time, the generic meds are no good for me & Brand Names are hard to get, so patients are left without meds, when comments are passed " you can go without for a few days" it makes you wonder how safe we are, By the way generics are more expensive than Brand Name.

  • Even more unbelievable is that hashimotos sufferers w tsh within 'normal ' range(like myself) are being left completely untreated for years;i was tested for high antibodies(600iu/ml) 4 f**king years ago, and have had hypo symptoms going back 13 years(after my first preg).If the gp's know that by now i most likely have no thyroid left!!what the hell is this madness?its like a bad dream cos just cant believe how they treat us(or rather neglect us).I just dont know why we arent all 'up in arms' ,doing a big protest...enough is enough;peoples lives r being destroyed..

  • Scary...I had a TT four years ago and the oncologist had been regularly monitoring my dosages...raising it slowly as time went by I was finally on 225 mg on a weekend and 200 mg during the week.....was slowly starting to feel like the old "me" no cotton wool head....no crying for no reason slowly starting to see a light at the end of a tunnel........until my Dr got involved and said as he was issuing the prescriptions would be the one doing the blood tests from now on.....and dropped my medication - levothyroxine to 100MG !!!!!!! And I now feel like I've gone back two years...struggling to work-as I sound like the village idiot with my words all jumbled in my head....crying ......can't sleep.....freezing feet with sweating all night......tried to explain to Dr who said I need to pull myself together!!!!! Wishing I could .

  • Try writing to the hosptial, and the Dr involved that end to answer questions on why you were being slowly scaled up and had got to a dose where you felt normal, only for your GP to undermine it and cut your dose right down.

    Could also write to your GP, as part of a complaint issued on harming your health. referencing their actions have re-sent you back to an unfit unhealthy state and was in direct conflict with the hopstial Drs actions.

  • The consultant has contacted the Dr and ordered him to do new blood tests for him....and I have an appointment to see my consultant....I'm going to let him sort the Dr ..as to be honest I haven't got the fight in me at the moment.Fingers crossed he will help me .

  • The NHS guideline states that hypothyroid must not be diagnosed or managed by blood tests in isolation. You have the right to disagree with your doctor, NEVER let your doctor dictate to you, they cannot reduce or change your meds without uour agreement, that means if you say nothing you agree!!!

  • This is an excerpt from Dr Toft's answer to a question. If you need a copy of the whole Pulse online article, email louise.warvill@thyroiduk.org.

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    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.

    ****

    This is from Dr Lowe who always said that the doses given nowadays are far too low and can exacerbate symptoms which are treated as 'not due to thyroid gland problems' and prescribed other medications:-

    If you’re new to the use of thyroid hormone, and you’re up to a dose that should be working for you, but you’re not benefiting from it, be sure to let your doctor and your pharmacist know. The dosage range that’s safe and effective for most patients is between 2-to-4 grains (120-to-240 mg) of desiccated thyroid. The equivalent dosage range for T4 is 200-to-400 mcg (0.2-to-0.4 mg). If you’re not improving within this dosage range, you may have thyroid hormone resistance, or the potency of the tablets or capsules you’re using may be lower than what’s stated on the label.

    web.archive.org/web/2010122...

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