Thyroid UK
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Going to see endo next week what do I want to know.

I was on 275mg of levo for over 10 years and continually telling my gp how ill I felt. A friend told me about endo"s so I asked my gp to refer, she was reluctant but eventually got her to. It turned out I was on the wrong meds for all this time. For the last few years I have been on 125mg levo and 20mcg of liothyronine . My health has become worse to the point I have been diagnosed with fibromyalgia. They say the have done all the tests and that is what I have, why can't I accept this. Now at the point of leaving my job as a can no longer work, I have worked full time in a good job for 26years.

I want to ensure the endo had checked everything out ,I am confused about all the different things, ie graves, Addison, cortosal testing etc. the fatigue, pain, dizziness, fog etc. is now killing me. I have never even had a scan etc of my thyroid to ensure it's all ok.

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Have you got any of your blood test results?

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from what I know in my opinion you need to have your blood tests done for t3/t4/ferretin /follate / vitd /as well as tsh [ all can be done from one blood test ...... your FULL thyroid [ if that is your problem ] can then be ascertained and then treated to the optimal levels ------ but this will depend on how good your gp is and how he/she forces the particular lab ......alan x

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Thanks, the gp wasn't doing the the t3/4testing but this has now been getting done by gp and endo. She also checked voted and said it was fine, but I have never seen the results to know the correct levels. Think I am going to ask for them and post on here. Thanks Alan

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Harry no I don't I am going to ask for them next week and post them to seek people's advice. Thanks

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In my personal experience and reading information on this forum - fibro can be connected to LOW T3 - the most ACTIVE hormone and needed in every cell in your body - 13 trillion at the last count :-) How are your VitD levels ?

People with thyroid issues have many underlying conditions that can be helped with optimal treatment. Do you have Hashimotos ? - were your anti-bodies tested ? So ensure you have B12 Iron Ferritin Folate VitD tested - as others have suggested. If you think it is an Adrenal issue then take a look at Adrenals on the website stopthethyroidmadness.com where there is good information. Also some simple tests to do at home to see where you are - before investing in private testing. Sadly the NHS do not accept Adrenal Insufficiency - only treat them when they are shot.

Are you taking your T3 in split doses ? Are you taking your T4 away from calcium and iron in your diet ? Are you supplementing ? sorry - lots of questions :-)

I have Hashimotos and was diagnosed with Fibro over 14 years ago. Being optimally treated has made a HUGE difference to my life. OK I am retired - but would love to have had this health when I was working and running businesses .....

One step at a time and all will be well....

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275mcg thyroxine ...........does not equate to 125mcg thyroxine plus 20mg T3

You are clearly still hypothyroid and I suspect your doctors are relying on TSH test alone

get copies of all recent years tests plus reference ranges so we can see

I also bet that your ferritin and folate are very low

as may well be

B 12

Calcium

Vit d3

Magnesium

Self medicate if you have to using a Natural Thyroid product

google work of Dr Lowe and fibromyalgia

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It may well be that the T3 is too low and you have a conversion problem so that the T4 is not giving any benefit. It may even be that with the conversion problem the T4 is creating reverse T3 (rT3) which blocks access to the cels of the normal T3. That is what happened to me. The endo kept raising the T4 but it made no difference to my energy or brain fog even though the TSH went down to 0.01. He then agreed to add T3 and I was better though still tired but had a clearer mind. I read Paul Robinson's book 'Recovering on T3' and realised I could be one of those with a conversion problem. My endo agreed to try T3 only and I recovered within a week to something near normal. The change was enormous and as my wife said 'I got my husband back!'

Tell your endo you would like to trial T3 only for a while to see if it solves your problem. On T3 you need to split the doses. I take 20mcg at 6.45am, 20mcg 11.45am and 10mcg 4.45pm. I take them on an empty stomach and I never vary the time (alarm on my phone which rings even if on silent). If I am late with a dose by 30 mins its a problem; if late by an hour I lose the rest of the day, so it is sensitive to changes. That's my suggestion/experience for what its worth. It takes a lot of patience to get sorted but it can be done!

Marz may be able to give you better advice as he was fibro where I am just Hashimoto hypo. I assume you have had cortisol/adrenals checked.

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Very informative - including your ID! What was it in your reading that made you think you might have conversion problems?

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Sorry excuse my stupidty what does ID mean , thanks

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I meant the name 'T3sortedme' as it obviously has sorted him! Sorry if I sent it direct to you by mistake. Hope things get sorted - will be very interested to hear what happens and holding my breath that you get good enough advice not to give up your job.

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You may find that your meds just need s little tweaking. When you changed from 275mcg t4 to your current dose your doc effectively reduced your dose, which may be why your health then declined and began showing symptoms of fibro.

Get your test printouts and post them here and you'll get help. :-)

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Thank you all so much for your help . I am setiously at breakdown point mentally amd physically . I have tried to get help continually from gp and endo etc but getting know . My husband and children have lost their wife/ mum . Cant ehat my life has become . Thanks again for all your help and eill post next wednesday after i have been .

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I look forward to seeing your blood test reaults. :-) If you're simply undermedicated a higher dose of meds may help a lot.

Are you taking your t4 with water only, on an empty stomach and hour before any food/non-water drink? xx

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My GP did not instruct many tests and the few he did is what the endo used. The GP was very helpful in that his view was 'I always treat the symptoms, not the blood tests'. It was him that suggested T3 might help and he sent me to the private endo. I drove the process myself to get changes. You will find as you read around that there is not much knowledge out there on this subject in individual doctors (and even endo strangely). Each of us is different and what you need is an open minded doctor or endo who will work with you to try and range of options to see what works for you. That is how it worked for me, but I did have to push at every stage. Read up well; I suggest reading Paul's book for some background though it can be a bit 'technical' to read, it is worth gaining the knowledge.

Basically most respond to T4 and its about gradually increasing the level until the patient feels well. If this does not work check all the vitamins and make sure there is not a deficiency affecting them. Thyroid problems can come with gut problems that make absorption of some vitamins a problem. If none of this works, there may be problem with converting T4 to T3. Start reducing the T4 and adding T3 to see if there is an improvement. If there is some but limited improvement, increase the T3 and reduce the T4 further.. If improvement, take the T4 to zero and use T3 only. All this takes many months but is a gradual way to test what is working and find an optimum.

Make sure you does T3 correctly (timing and amounts - see Paul's book for guideline). It is a short term chemical and you need to take it through the day for it to work. T4 lasts days and takes days to clear when you stop. T3 is much faster acting and much quicker dying away as it is used up.

TSH does not help much as a test as it is a response to the need for T4. If the T4 is present it drops but if the T4 is not converting to T3 it means nothing! You can get T3 and rT3 blood tests done.

Hope this helps.

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Who is 'Paul'?

Thought of your earlier reply which advised taking T3 at three precise times during the day when reading the final comment on the study mentioned by PR4NOW that:

Presently the prolonged use of l-T3 alone for

treatment of hypothyroidism cannot be

advocated in a clinical setting because thrice

daily dosing is not practical and may affect

patients' adherence with treatments

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Paul is Paul Robinson who has written an excellent book 'Recovering on T3' for those who don't get well on T4. His book is available on Amazon.

The comment on T3 is only true if a patient cannot be relied on to consistently take his/her doses. I am very happy to do that as it is the only way I can stay well!! If someone can be well on T4 or T4/T3 combination that is both easier and better. It is an odd comment and poor argument since insulin/diabetic people and many others have to take doses three or more times a day!

Hope that clarifies my comments.

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Many thanks

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Marz, can you add to this thread? You have good experience , for longer than me and more closely related in terms of fibro.

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