My GP has recently decided to reduce my thyroxin from 200 to 125 saying that it unhealthy to have too much? So now l have some of my original symptoms back of sweating etc, however he who knows best says this is all in my mind!
He has however agreed to 7 week b12 shots to compensate so will be giving that ago, the reason l am posting is that whilst all this has been going on l have been getting lumps in my throat, a bit scary as the c word gets mentioned and off for checks cameras up noses and ultra sounds.
But it seems it's quite normal if you have auto immune(normal) 🙃 What is normal any way whilst he was telling me that it's all a sign of infection and usually seen in peeps with auto immune it dawns on my this consultant has no idea that l have auto immune !!!
Now the point is, obviously don't ignore any lumps,in any part of the body but it seems its possibly another friendly fire hit that your body may send you, but please make sure that who ever they send you too has read your notes.......
Hi - that's a huge drop in T4 all in one go, no wonder all your symptoms are back with a vengeance. When I am dealing with GP's like yours I do not let them reduce meds until they have done plenty of blood tests and explored other avenues. Have you got all your latest bloods that you can post - TSH, FT4, FT3 (if done - doubtful), VitD, iron and ferritin??? I am assuming that your B12 was dire hence the injections.
The trouble is that low vitd and low iron/ferritin will mimic low thyroid function so unless your GP has tested all the above and they are at a suitable level for a thyroid sufferer and not just in the NHS ranges then he should not be lowering your T4 at all but trying to find out what is going on with you.
Have you altered your diet at all to a more autoimmune friendly one i.e no gluten, dairy ect??
The lumps could just be harmless goiters, which in turn would be reducing your thyroid output significantly - hence the need for high doses of T4 - so getting these checked are a good thing.
Moggie x
Hi Maggie
Thanks for the reply, he had done bloods, l don't have them, l asked him to check ts3 he says it's ok within the normal levels. L will ask for them so l can post on here.
I do avoid what l can but don't cut out dairy, do you find it helps?
The best thing you could do to help yourself is get copies of ALL blood work you have done. What your GP thinks in o.k. may not be o.k. at all and, lets face it, can you actually trust your GP to do what's best for you???? A GP will just be looking at the NHS ranges and if you fit nicely in them then he will deem you as o.k. but your FT3 could be at the lower end of the range, which will then leave you with untold symptoms, and I think this is possible what is happening to you. What you have got to realise is that people do not always fit into the NHS "normal levels" as one size will definitely not fit all as the NHS would like.
I do not have any blood tests done without getting copies of the results and I certainly dont take the receptionists "there fine" as a given. I cannot stress enough how much my "thyroid folder" (which has all my blood tests, endo tests and letters, gastro tests and immunologists testing) has helped me out in the past when you are sitting in front of a "specialists" who has hardly any information on his/her screen about you - my immunologist went as far as to say he wished all patients had one as I was able to provide vital information regarding gastro tests that he just did not have.
Unfortunately in this day and age, what with budget cuts and a NHS that is under immense pressure, you will have to fight long and hard for what you deserve and to do that you need the information to hand - like blood results.
I think dairy for me is as big a problem as the gluten is and since giving up both my health has come on in leaps and bounds. I used to be on over 200 of T4 but am now fine on just 100, although it has taken me over two years of a lot of hard work and numerous diet changes.
Please phone the surgery today and request copies of all bloods you have had done in the last year (or even the latest ones would be a start) and then post them on this post and also on the thyroiduk site for people to look at and comment on but if you really want to start your journey to wellness you will need to cut gluten out totally if you have the autoimmune version of thyroid illness (have you had your TPO tested?????)
Exasperating that they dont read notes or consider history but I'm so glad you've managed to be treated with B12 injections and hope this will alleviate the throat symptoms, with other scary causes ruled out.
Having experienced deteriorating health over the years with GPs' ignorance of thyroid related issues resulting in failure to prescribe sufficient thyroid medication, I now buy my own NDT and regulate own dose - far less stressful all round as, like many, I only feel well with very low or suppressed TSH. Dr Tofts' book, 'Understanding Thyroid Disorders', published in associated with the BMA, is very helpful:
"There is considerable debate about the correct dose of thyroxine. The consensus is that enough thyroxine should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable."
You obviously already know that thyroid problems and PA/B12 def. are often interlinked, with many researchers believing leaky gut/intestinal disease the source, so may also find Dr Datis Kharrizian's excellent book, 'Why Do I Still have Thyroid Symptoms when my Lab Tests are Normal?", really interesting.
I believe leaky gut and absorption issues are at the bottom of all our own family autoimmune/thyroid/B12 issues.
Hi Applemac. Good advice from Moggie and Polaris about the thyroid issues etc 😀.
I'm just a little confused by your GP's rather odd approach to the B12 injections.
Although B12 deficiency and hypothyroid conditions have many cross-over symptoms, they are individual conditions and each should be investigated and treated as such. So it's odd to think that the B12 injections are being given to 'compensate' for a reduction in your thyroid meds.
It's not clear from your post whether you have been diagnosed with B12 deficiency and even if you have returned a blood test with a low serum B12, it's important that proper investigation is undertaken before you start on B12 injections, since having the B12 will skew some of the blood tests required. This is particularly important if you have not had a deficient b12 result already.
Your GP should also want to investigate the reason for your B12 deficiency...an absorption problems, pernicious anaemia, as a result of medications, previous surgery...and other things too!
He should (as a minimum) do the following blood tests: FBC, serum B12, folate, ferritin, anti-Intrinsic Factor antibody (IF) - he should also do an MMA and homocysteine blood test, especially if your serum B12 result is at the low end of the scale but not quite in the deficient range (since this will give evidence of deficiency, if present, and enable you to access ongoing treatment, if necessary.
And also please note...it is important that your folate levels are tested - these should be in the top third of the reference range. B12 and folate work together so if your folate levels are low, then you body will not be able to use the B12 properly. In the case of low levels, your GP should prescribe folate for you and keep a check on your levels. Folate should be started twenty four hours after your first B12 injection, and, if low, not treated with supplements unless you are also having B12 therapy (to avoid potential neurological damage).
If you would like to read the PAS pinned posts to the right of the page when you log on, these give further information about diagnostic and treatment protocols, together with all the current guidelines pertaing to this. Fbirder's document (on the third pinned post) - listed as Frank Hollis document - contains a usefully summary of all the relevant guidelines and will point you in the right direction for further reading.
It has to be said that GP's are as ill-informed about treating B12 deficiency as they apparently are about treating thyroid conditions. The best way to deal with this is by becoming your own expert so you can help your GP to help you...most here have had to do that, usually in the face of some quite hostile responses from GP's, so please don't be surprised if that happens to you 😖.
Again....seven injections...hmm...very odd. Needs to be followed up with a regular B12 injection regime. This is vital if you have neurological symptoms related to a B12 deficiency (check the symptom list in the pinned posts). if you have these, you will need more frequent injections than the three monthly GP's usually prescribe. There is information about this in the pinned posts but please ask if you need to know anything lease about this.
Good luck and please post again if you need any further help or advice...lots of knowledgable people here who will pop in to assist.
Take care x
Hi Guys
Lots of good advice thank you all, l will get my results and start a diary, and post on here l have been asking since l was diagnosed to see an endiocardiologist but just get told if we think we need to we can get advice from one the 7 week injections are because the lack of thyroid l felt was leaving me drained so he said to increase the b12 currently on 8 weekly after a battle from 12 !
Has anyone seen an Endiocardiologist privately in the Dorset area? Did it help?
B12 injections will not compensate for being under medicated on thyroxine. Please post the thyroid results and ranges (figures in brackets after results) which led to your GP making such an enormous reduction in dose. Dose adjustments are usually in 25mcg increments at 6-8 week intervals. I would seek a second opinion from another GP at your practice as soon as possible.
If you want a list of Thyroid UK member recommended endocrinologists email louise.roberts@thyroiduk.org.uk
Sorry a bit confused by your endiocardiologist, do you mean endocrinologist, a so called thyroid specialists????? If you do then you must be warned that a lot of endo's mainly specialise in diabetes and not the thyroid. You will need to do your research really well to find an endo in Dorset who actually knows about the thyroid. Myself, I would recommend you forget the endocrinologist and find a private immunologist as these are the people that really know about the immune system and why it has gone wrong. It was lovely to finally sit in front of a specialist who actually knew the why's and wherefore's of the immune system and thyroid illness. I had already gone down the endocrinologist route and, although I got some great blood work and testing done (adrenal testing, dexa scan, heart scan, gastro referral) it was a struggle all the way to get him to admit that that little white pill you have to take will not cure all and as for any alternatives such as T3 or NDT (he nearly threw a fit and threw me out of his office at this suggestion.lol.) he just was not interested and he was one of the better one's in my area, and as for the gut/immune system connect you can forget that as well as it totally passed him by. Why autoimmune patients are not referred to immunologists as a matter of course is beyond me as, take it from someone who knows, they really do understand what is going on and his advice to me was - I was doing everything right with my elimination diet (no gluten, dairy ect) and he ran tests on my immune response to other foods and factors - turned out I had a huge autoimmune response to dust mites as well as responding to gluten, legumes and a few other things. People do not realise that it can be environmental factors that cause the immune system to cause havoc in your body, not just the food you are eating.
I look forward to seeing your resent blood tests when you post them.
Moggie x
Thanks all for the good advice and time you have given me , got my Endios muddled it's that time again running low! Will look at at immune specialist will post bloods when l have them .....
Dear Applemac, I gather that you were doing well on 200mg thyroxine daily. Please read and print out the document mentioned below, and give it to your doctor. It shows that T4 is not easily converted to T3, and that a suppressed TSH is not a reliable indicator of over treatment in patients taking T4; it mentions several studies including one published in the British Medical Journal.
I have Hashimoto's diagnosed years ago, and Pernicious Anaemia. Every time I have a blood test my serum thyroid levels extremely high and TSH supressed, (I also take 200mg per day) and yet I do not have any hyperthyroid symptoms. My doctor points out that I am taking too much thyroxine every time I have a blood test. The last time I demonstrated that my hands are not shaking, etc. He said he was concerned that I might suffer from hypertension (high blood pressure, high pulse rate and palpitations). I asked him to take my blood pressure and pulse: Blood pressure, 104/74, pulse 72 - normal for my age. As mentioned in other replies, your doctor should listen to your experience of your illness and treatment, before reacting to blood test results. Good luck, hope you can use all the information in these replies to get a good result from your doctor.
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