Hi, I am new to hypothyroidism (aug 13) and started off with 50mcg levo. New bloodtest came back with a TSH of 10.5 and med increased to 100

[simplemindsfanatic]

mcg last week, I can't seem to find much info on TSH levels and I am wondering what is a normal level, also is it dangerous to have a high TSH? Thanks in advance for any advice given

[Moggie]

Hi and welcome aboard,

You will find that the level acceptable by your GP is totally different to what a sufferer will find acceptable. You should be aiming for a level of one or under to relieve your symptoms and yes a high TSH can be dangerous as it shows that your body is not working properly so everything will be under stress.

Just going to run through a few things for you as I doubt whether your GP has. You need to keep leave, at least, two hours away from any food or drink (except water) and four hours away from any other medication of supplements you are taking. Because of this a lot of thyroid sufferers find that taking their meds at night, just before they turn off the light, suits them better. You just need to make sure that you haven't eaten for two hours before hand plus some doctors are now saying that levo absorbs better overnight as there is nothing to interfere with it.

There are also certain vitamins that need to be at optimum levels for thyroid medication to work properly so you will need to get your GP to test these. They are B12, VitD, Ferritin (iron stored in your body), iron and folates. If any of these are not high enough then your thyroid medication will be struggling.

You will also need to start getting copies of ALL your blood test results from the GP so that you can keep an eye on things yourself plus you can post them on here for advise.

Moggie x

[Moggie]

Also have a look around the main thyroiduk website for some great info.

thyroiduk.org.uk/tuk/about_...

Moggie x

[shaws Administrator]

You will probably now find at your next blood test your TSH will have reduced. Your GP should do a blood test every six weeks till you are on optimum medication which makes you feel much better. As Moggie says, always get copies from now on of your blood tests for your own records and so that you can post if you have a query. They must also have the ranges as labs differ throughout the country and it makes it easier to comment.

Some GP's believe that when you are 'within range' that you are better, despite still having clinical symptoms.

[simplemindsfanatic]

Hi, thanks for your replies guys. I must admit I feel alot better this week due to increased dose of levo, no more " drunk" feeling and " brain fog"!!You are right Moggie, my doctor didn't give ANY advice on how to take it! Quite unbelievable actually after reading what you said!I didn't realise there were other things to test for alongside hypo!! The nurse taking the blood tests told me just to expect to keep getting fatter and that she could arrange counselling to help me " accept" that fact!! Also that once I have a BMI of 35+, they could do something about my weight, then handed me 2 diet magazines and told me to follow the eating plan therein!! Raging!! Now I know what to ask for next test time. Also, what is a high level of TSH? Was my 10.5 high or just a wee bit?? Why are doctors not very knowledgeable about these things? Thank you for your help and advice. Much appreciated, will keep you posted!

[HarryE in reply to simplemindsfanatic]

What??? How patronising!! Yes a TSH of 10 is horrible! You should be aiming for about 1

[simplemindsfanatic]

Yes, I know Harry!! I am very fit and active, I do meta fit classes and run 10k races, although I have not been as active in recent months as I kept feeling faint and my heart wasn't beating properly. On reading others questions, I realise that I have been putting myself at risk due to misdiagnosis and being undetreated!! Quite scarey actually! My weight or rather my clothing size, was becoming an issue for me ( 5" 1 and a size 16 and griwing!!). I was training for a half marathon and wasn't even dropping a clothes size, but I was completely knackered and had sore bones all the time that I dropped to a 10k as I just thought that I would never make it to the finish in the half, I just couldn't work out WHY I wasnt improving, I joined a slimming group and every week I went for weigh in, I had gained! That's when I went to my doctor, he tested for all things and that's when I was diagnosed hypo. Fair enough I thought, took my wee tablet and carried on training etc, but I kept getting faint and dizzy spells, doc said not to run the race if I felt " unable" WHAAAAAT??? Had been running for 3 years!! Things are all slotting into place now and making sense re heart palps and irregularities!! Wee bit of a light bulb moment there!! I shall be researching thiseven more nnow! Thank you all for the advice! Greatly appreciated x

[Moggie in reply to simplemindsfanatic]

Yes a TSH of ten is high enough for you to be feeling awful and to be piling on lots of weight. Sore bones could be low VitD so you really do need all the vitamins I stated testing.

I think I might have punched the nurse.lol. She obviously doesn't have a clue how the weight can we suffer can effect our self esteem.

Read lots, learn lots and then go back and educate your GP and nurse as they sounds as bad as one another.

Just a little tip when using this site - If you want to reply to someone in particular use the "reply to this" button in green, at the end of their reply to you, and they will get an email to say you have made further contact, it just stops people missing any extra questions of comments you might have.

Moggie x

[simplemindsfanatic in reply to Moggie]

Yes I must admit I was very deflated and upset by her comments that day,she Is just new to the surgery (January) and seems to be a bit of a know all! I SHALL be reading lots and gear myself for the next test in 6 weeks time lol, I am not excessively overweight but I am a good 3 stone above my usual 9 st and have never been this size before, but it's the fact that I am fit and active and keep to a super healthy diet that just makes it all so bewildering, it's all beginning to make sense now as to WHY I wasn't shifting it and feeling tired and achey all the time! I told this to my doc years ago about the"bone" pain and it has obviously passed him by!! Incredible really! I put it down to my running shoes and had new ones fitted which helped at first then the soreness started to creep back in over time and I ended up " zoning out" and pushing through it!! I am really learning a lot here, so glad I found you otherwise I would just be taking my tablet and plodding on hoping for a miracle! Thank you x

[Moggie in reply to simplemindsfanatic]

I'm afraid with this illness you have to become an expert in all things thyroid as the GP's and even endo's (endocrinologist - specialist thyroid consultant) don't know too much - an endo also deals with diabetes and you often find that they know quite a bit about diabetes but not a lot about thyroid illness.

The more you learn the more you will find that you are controlling your medication and treatment and in the end it will be you advising the doctor. Sounds a bit far fetched but that's what happens when your GP doesn't know what he or she is doing.

Moggie x

[HarryE in reply to simplemindsfanatic]

I am a walk leader for the Ramblers and regularly climb serious hills and walk over 12 miles. But I can barely make it to tesco at the moment! I feel your pain.