Would welcome some advice before visiting GP. Have been on 100mcg Levo for approx 12 yrs. Past year has been awful.

[Luthrie]

Brief history: whilst being treated for Graves' disease approx 12 yrs ago, developed meningitis (rare side effect of carbimazole)had RAI treatment- because I was so seriously ill this seemed like a good idea at the time!!

Following recent annual blood test levothyroxine has been increased to 125mcg.

For the past year have been feeling quite unwell, thought most of my symptoms related to stress of work eg chronic fatigue, brain fog, weight gain, memory loss, joint pain, palpitations, inability to make any decisions, numbness, prickling sensations etc.

Resigned from my job but symptoms have worsened. Did not make the connection until prescribed more levothyroxine and found this support site. How stupid am I?

Have been advised by surgery to return for further blood test in June. Obviously do not want to wait till then as I fear I have left things too long as it is.

Need to know where to start/discuss with GP re my health.

Thank you for your patience!

[Jackie]

Hi poor you. First it sounds to me like you should be seeing an endo, of your choice not the GP`s. You have not posted any results,I could not advise on Graves, but know autoimmune and results can go up and down. Ask the receptionist for a print out of all you results and range.It could well be wrong but in view of what happened I would think you need Pituitary tests,,urine with embellishments, ,for it. Make sure you have had the other autoimmune thyroid related, hormonal tests done, they cloud the picture.Vit D ( if low corrected calcium which must always be in range),B12+ Foliates, diabetes,Iron/ Ferritin.Even if Ok with auto immune thyroid disease ( Graves) you need them done annually.personally I would also ask for kidney function , U`s and E`s, common, cheap test.

I hope that helps a little.

I think I recognise your name but if you do not know ,click on "reply to this" to reply to some one.

Best wishes,

Jackie

[Luthrie in reply to Jackie]

Hi Jackie

Thank you for such a quick and informative response.

I do not have a copy of my recent blood results but will request this when I see my GP.

Many thanks.

[shaws Administrator]

We just assume doctors know best but many times we appear to be left to 'get on with it'.

[Luthrie in reply to shaws]

Hi Shaws

To be fair since having received treatment for my diagnosis of Graves all has been well and with the exception of annual blood tests I have indeed been left to 'get on with it', it is only in the past year that I have been aware of any health issues.

Having read so many negative experiences by others on this forum I am perhaps, unfairly, anticipating similar responses from medical practitioners who I will be meeting with!!

Watch this space as they say ......

NB: I wish to add that I have also read much positive and inspiring posts on this site.

[marram]

You really have had a rollercoaster ride! I've been through the carbimazole mill, along with beta blockers, it did me no good whatsoever. Your having meningitis was likely due to the fact that carbimazole can dangerously deplete the white blood cells leaving you with no means to fight infections.

Who told you that "chronic fatigue, brain fog, weight gain, memory loss, joint pain, palpitations, inability to make any decisions, numbness, prickling sensations etc. " Were related to workplace stress? Let me guess: your GP.

In that case, giving up work should have got rid of all those symptoms. But, of course, you know that - now. (the prickling sensations could be low B12, by the way)

I presume that if you had RAI you no longer have any functioning thyroid, or is there any left at all? I would have thought that if you were feeling bad on 100 then, like me, your thyroid is not functioning at all. I have read a paper recently that suggests that the antibodies of Graves' start to disappear after a time - about a year in the case of RAI, in about 3 months in the case of surgery - and continue to decrease so, hopefully, that is no longer a factor in your blood tests. Even so, they should be looking at the T4 and the T3 when deciding on your Levo dosage, not just the TSH. That is important for all thyroid sufferers, but even more so for those whose thyroid is not functioning at all.

If only I had found this site before now. I had the same symptoms when I was reduced to 100 Levo from 150 (had total thyroidectomy for Graves' 32 years ago) and the doctor also wanted to blame something else. Unfortunately he was unable to blame work as I retired 8 years ago at 60.

So he blamed my husband, who has Psoriasis and Psoriatic Arthritis, and my having to care for him. I pointed out to him that he had that when I was working and I was caring for him then - AND working - but I did not suffer those symptoms. What was different? Ah, yes. I was on 150 Levo then. Strange coincidence.

But then again, my cholesterol was only 4.7 then, as opposed to 9.7. What was different? Ah, yes. I was on 150 Levo then. Need I go on?

He has agreed reluctantly to an increase of 25 so I am now on 125 and although I have seen some improvement it is quite clear that the dosage I was happy and well on is 150 and until I get back to that I will never really feel right.

Unfortunately, the seven years (nearly) of being on only 100 have finally taken their toll and I now have my heart enlarged. So, of course, he is terrified to give me any more.

In the meantime, I have started taking COq10 to help my heart, and vitamin B12 (Methylcobalamin NOT cyanocobalamin which the body has to convert to methyl) and am planning to have other vitamins and minerals checked when I can afford it, as the doc will not do them. Dr Chris Steele, patron of Thyroid UK, recommends COQ10 for over 60s so that's why I take it, plus I hope that it will help my poor old heart to recover.

Great, isn't it. Mess with my dosage and cause damage, then tell me I'm too damaged to take any more. Thanks a bunch. Is that what you call care?

Where to start: First and foremost, get the book "Understanding Thyroid Disorders" by Dr Antony Toft (Published by the BMA and the Family Doctor Association, and available from many places, I got it from Amazon for less than £5, it is in Boots as well. I think) and give him a copy of page 88 which gives the figures to be aiming for when treating with Thyroxine.

If you CAN persuade him to get the T3 level checked, that would be great. If not, it might be worth getting the home blood test kit from Blue Horizon for the Intermediate Thyroid Hormone Test and that will give you TSH, T4 and T3 with the ranges. The information for this is on the main Thyroid UK website.

Hope this helps you.

Marie XXX

[Luthrie in reply to marram]

Hi Marram

Thank you so much for responding.

In fairness to my GP, when I was still working, she only suggested that my palpitations maybe a direct result of anxiety and stress which could be work related.

I did have my heart monitored for 24 hrs but no readings of irregularity recorded!?!

I moved house 2yrs ago so have had to change to new practice. As previously mentioned it has only been this past year that I have felt unwell and had any issues with my levels, so as yet have had no direct dealings with any GP regarding recent health concerns.

However I must be honest and admit I find the thought of opening up a dialogue with my GP quite daunting, having read so many others negative experiences on this forum, from unhelpful and dismissive members of the medical profession, not sure if

I have the fight in me to commence battle, however, I do not wish to experience the alternative any longer!

Fingers crossed..........

Many thanks

[marram in reply to Luthrie]

Power to your elbow!

XXXX