I'm new here...

I've been diagnosed with hypothyroidism about a month ago. My initial symptoms which initiated a Doctors appointment was constant cold sores, mouth ulcers, generally feeling tired, run down and coping with hot flushes 6 years of menopause symptoms. Blood test were done and my thyroid results came back which I have no clue what they mean: TSH 24.72 mU/L 0.35 - 5.50     free T4  6.3  pmol/L  7.0 - 17.0 My GP started me on 100mcg levothyroxine and within 2-3 days I became so ill, struggling to breath, no energy, feeling weak, larthargic, forgetful and just a sense of impending doom. I went back to my GP twice over the following 3 weeks, before she eventully agreed with me that the dose could be too high, she reduced it to 50mcg which I've been taking now for 8 days. I'm feeling so much better now since reducing, I feel like I have an underlying infecton or allergy. I do think that this dose is too much as my hands are shakey. I'm wondering if I even need to be on this medication at all, but not sure what my results mean...my GP said she didn't have time to explain results to me...but for me to go look up information on the NHS website. Would very much appreciate some sound advice from anyone who wiil understand my symptoms. Many thanks.

[humanbean]

You do need to be treated, and 100mcg levo may be the right dose for you, too little or too much. There is simply no way to tell yet.

The big problem is that hormones often don't adjust well to the sledgehammer treatment. It is a difficult balancing act - start too low and the whole process of getting to the right dose for you is dragged out incredibly, sometimes for many months. Start too high and the body won't cope.

Stay on the 50mcg for 6 weeks and then ask for new blood tests. Assuming the dose is too small then you should ask for a raise of 25mcg per day. Then re-test 6 weeks after that, and start the cycle again - 25mcg raise in dose, re-test in 6 weeks.

[SlowDragon Administrator]

You might find this page helpful

thyroiduk.org.uk/tuk/diagno...

Feeling a bit "over treated" - a bit shakey, anxious etc is quite common when first starting on thyroxine.

This link below explains well how/why we need to increase slowly and wait for the body to "catch-up". 

thyrophoenix.com/adjusting_...

[Hidden in reply to SlowDragon]

Thanks for this.

[Hidden]

Thanks for info, my other results are

Ferritin - 89  ug/L    15 - 300

B12   -  458   ng/L     150 - 900

Folate   11.4  ug/L    > 3.0

Can't find test result for vit D3 not sure If I had that test done, will GP check this. Can you tell me what these results mean and what is the mid range...where can I find info.

Many thanks

[greygoose in reply to Hidden]

Your ferritin and B12 could be a bit higher. Most people feel good with their ferritin around 100, and optimal for B12 is 1000. B12 should, in any case, be over 500.  

[Hidden in reply to greygoose]

Thanks greygoose for this information. I don't mean to sound silly, but how do I increase these levels, my doctor told me everything else was ok. I'm beginning to realise that I'm not getting full support from my GP.

Levo is not suiting me at all, too many side affects, would the GP prescribe pigs thyroxine if I asked? 

Feeling desperate.

[greygoose in reply to Hidden]

It is very, very doubtful that your doctor would prescribe iron or B12 with those levels, and if he did, they'd only be low doses of the cheapest forms. You'd be best off buying your own. I Don't know about iron - not my subject - but for the B12, get some sublingual methylcobalamin, 1000 mcg daily (you'll find this on Amazon, but they usually only have the wrong one in pharmacies) plus a B complex with methylfolate, rather than folic acid. Thorn does a good one.

You have to remember that doctors know nothing at all about vitamins, minerals or hormones - although they think they do! And they firmly believe that NDT is snake oïl! And dangerous, to boot. So, it's very doubtful that you'd get it on the NHS. But, you could always buy your own on-line.   

[Hidden in reply to greygoose]

Thanks g/g for this insight. Ive read on here a number of comments from others, I now realise that hypothyroidism is more complex to put right than I first thought! Ive made a decision to start self medicating, I will inform my GP. I have a print off of my results, would appreciate any advice /comments but not sure how or if I'm allowed to put them on here.

Thanks

[greygoose in reply to Hidden]

Indeed you are allowed to post your results on here! That's the best way to get helpful comments. But don't forget the ranges. The results aren't much good without them.

Thyroid is a complicated subject. But for the majority of people, treating it is reasonably simple. But, for various reasons, some of us don't fit the mold, and then doctors are totally lost. That's way we need to be able to discuss it all with kindred souls.

In my particular case, l believe it's complicated because it took me over 50 years to get diagnosed - and I'm not the only one in that case - so, l think a certain amount of permanent damage was done which can never be resolved, and means l need to be on a pretty high dose, which doctors just don't like. I think I've also been B12 and magnesium deficient for most of my life, too. 

You, on the other hand, may be one of the simple cases. So, don't get discouraged by some of the things you read on here. It might, as they say, never happen!  

Once you get onto the right dose, and your body settles down, and your nutritional deficiencies are optimised, it should be plain sailing. But, if not, there will always be someone here to help you.

[Pastille]

As well as all the above, boost your immune system with Vitamin C. I take 1000mg daily, you may benefit from more. I use zovirax cream as soon as a coldsore starts to appear and it prevents it from breaking out fully. When you are optimally medicated and supplementing where required, you will hopefully get less coldsores. Sore tongue can also be a sign of B12 deficiency 

[Treepie]

As mentioned above check out the Thyroid UK site and Thyroid Patient Advocacy (and join one or both)  to learn about the disease.

[Hidden in reply to Treepie]

Thankyou Treepie, for this valuable information and have now joined TPA.

[Treepie in reply to Hidden]

Your welcome, there are also some US sites worth a look:

Stop The Thyroid Madness( also two books), Hypothyroid Mum, .Isabella Wentz .