Please can someone give me some pointers? I was diagnosed Hypo early this year. Long story short- my GP is lovely but very dismissive! He has tested my TSH once since starting Levo- and on my insistence they agreed to test one of the thyroid antibodies too (I'm not sure which!) my GP says it is autoimmune thyroid, but not Hashi's...??
Anyways, I've been on 75mcg Levo for about 4 months now. Still feeling tired ALL THE TIME!! sleep is rubbish, manky skin and hair etc. etc. Most worrying for me is this god awful weight!! I exercise 6 days a week (horse riding, clubbercise , 5K runs and a military bootcamp!) and eat a clean and healthy (high protein, low carb, low sugar) diet- and yet I continue to gain weight. Now, I've tried to convince myself it is muscle and muscle weighs more than fat- but it is hard to justify when I have gone up 3 clothes sizes in 8 months!!!
So I'm thinking T3 might be my answer. No chance of GP referring me to Endo- I can't even get an appointment to see him! I have a link from a FB group for T3 from Turkey- but seems maybe you guys know of different suppliers?? I am very sceptical of buying meds online, but feel more confident what with it only recently not being available on NHS due to cost.
Any advice very greatly appreciated
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sunshinetinkerbelle
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sunshinetinkerbelle Can you post your test results with reference ranges? The antibodies usually tested are Thyroid Peroxidase (TPO) and positive TPO antibodies means Hashi's. So what other autommune thyroid disease is he talking about? Are you overactive, have Graves disease, that's a different antibody? No, you are on Levo so you're underactive so you've either had TPO or TG (thyroglobulin) antibodies tested. I don't think the NHS does TG Ab testing so my money is on TPO, ergo Hashi's! Please someone tell me if I'm wrong
It's still early days. It can take months for feel better. Have you had your thyroid tests done 6 weeks after increasing to 75mcg Levo? That is what should have happened and any dose adjustment made. Then another test 6 weeks later and if necessary another dose increase, and so on until your symptoms alleviate and your TSH is around 1 or below and your FT4 and FT3 in the upper part of their ranges.
Dr Toft, past president of the British Thyroid Association, and leading endocrinologist, wrote this in a Pulse Online magazine article:
"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)."
If you email louise.warvill@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP.
All that exercise is doing you no good at all. Hard exercise depletes T3, T3 is the active hormone, without enough you can't get well. So - 5K runs, military bootcamps, clubbercise (not sure what that is)?? Please stop for now, you will not lose weight until you are optimally medicated and well enough. Adding T3 is not the answer to allow you to continue this sort of exercise and lose weight. Being optimally medicated and addressing your Hashi's (if you have it) is.
So for now get all your thyroid results, make new thread and post the results with reference ranges, let us see if you are optimally medicated and whether or not you have Hashi's.
Also, ask for (or get privately) tests for B12, Vit D, ferritin and folate. All these vitamins and minerals need to be at optimal (not just in range) levels for thyroid hormone to work.
Once members can see what's going on, suggestions can be made for supplementing any deficiencies in vitamins and minerals and what adjustments might be necessary with your thyroid meds.
Oh wow!! Thanks so much for this. I haven't a clue what my results (or reference ranges) are. Why does everyone have different reference ranges??
I think I will try and make GP appointment tomorrow and ask him to do full tests- when he refuses then I will ask the receptionist for copy of everything to arrange private test, blue horizon is it...??
Incidentally, clubbercise is like Zumba but in the dark with glow sticks!!! A fairly intense cardio workout it's great fun too!! It is very demoralising to be doing so much exercise without it paying off, so I will definitely take on board your advice about making sure I am appropriately medicated too. Just the idea of having to justify myself to the GP seems a bit daunting!
sunshinetinkerbelle Clubbercise sounds like fun! I like the idea of doing it in the dark, no-one can see your wobbly bits .But please wait until you are in a better place with your thyroid. Gentle exercise will be OK - a walk (do you have a dog, best excuse ever!)
Different labs use different ranges, a bit of a nuisance really. It doesn't really matter as it's where in the range you fall, but we need ranges to work that out.
You are legally entitled to your test results under the Data Protection Act so just ask for a print out. A small charge may be made for printing. You don't have to give a reason but if asked just say it's for your own records and don't expand on that.
Yes, Blue Horizon for private tests. An easy fingerprick test at home or a blood draw if you can get it done, either will do - details here thyroiduk.org.uk/tuk/testin...
Blue Horizon - Thyroid plus eleven tests all these.
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on any thyroid blood test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) and DON'T take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.
As you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too. Selenium supplements can also help reduce antibodies.
Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some of us prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away
Best advice is to read as much as you can. Vitamin and minerals levels are VERY important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about B12, folate, ferritin and vitamin D. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.
I have managed to book GP appointment for this afternoon with a new Dr...we shall see whether she is more helpful!! I have written down all the things to ask for to be tested and will make sure I ask for a print out of all test results to date.
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it's great fun too!! It is very demoralising to be doing so much exercise without it paying off, so I will definitely take on board your advice about making sure I am appropriately medicated too. Just the idea of having to justify myself to the GP seems a bit daunting! 
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