I am new to this and this is my first post. After 30 or so years on Thyroxin my original symptoms are returning. Exhaustion, weakness, brain slowing down, aches and pains. My GP has referred me for chronic fatigue. Could there be a chance that my thyroid meds have stopped working or getting to the cells they should be getting to? And that this is not CF at all?
Also does anybody know if any of the Thyroid gland can be left. I have this image in my head of it all eaten away by my own antibodies. Could there still be some production of hormones still going on and even can my T. gland be made to work again? Sorry a bit of a long one but I am sooooo confused and tired and also I am feeling hopeless and at the end of my tether. To add to the mix I now have severe restless legs, (spread to arms).
Thank you
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smilingjane
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Could you add your last 2 sets of blood tests results to your post and your present dose of Levothyroxine? Have you ever seen an Endocrinologist? If not as you have symptoms then ask GP to refer? Ever had an Ultrasound scan of your Thyroid? Have you ever had the following nutrients levels tested (if not ask GP to test) -
Hi Mary thanks for getting back. I haven't any results but can obtain them and get back. I will request a ref to an edocrinologist. Test for all vits etc have come back fine. Is it just a scan of my thyroid that informs if there is any of it left? I have been on 125 - 150 thyroxin for 27 years. GP now put me on 100. I feel though that it is not working as it was and that i should be on higher.
GP dropped dose as previous tests showed slight elevation and wants to get results in tight frame because i requested ref for CF which he wont send through until thyroid showing okay results. Bit of a vicious circle ... cf and UT symptoms both similar ..
Well thats true, the thing is though I had dropped to 125 a while back from 150 maybe a year or so cant remember Also I have depression (probs secondary) - poor sleeping over the years with restless legs. so a bit complicated. As we all are!
Hi Mary hope its okay that I msg you with my results for you to explain to me (hope you don`t mind) - I am learning slowly.
I asked for 3 months results but only have the latest, 25/03/19 which states:
Thyroid function test - Abnormal
Value Units Range
Serum TSH level 0.12 mu/l 0.30 - 4.50 mu/l
Serum free T4 level 21.2 pmol/L 10.00 -22.00pmol/
Consistant with levothyroxin over replacement.
May require T4 dose reduction.
Repeat in 3 months.
GP reduced me to 100 mcgs. I have the classic usual symptoms of hypothyroidism though and GP has refused to refer me to andocromist saying that they are still going ahead with a nuro refer for chronic fatigue.
They also say that there is no need for a Thyroid ultra-scan as all that would have been done when I was initially diagnosed 30 years ago.
Firstly - if you wish you can ask for copies of all your medical records and they have to give you them free of charge now (since new rules 25 May 2018). You could write a brief note to GP or Practice Manager requesting them ALL or just more blood tests results or whatever you want (Ultrasound result from 30 yrs ago?!)
BUT - Your FreeT4 might be high but it IS within the normal range. So high in range not HIGH indicating over-replacement. You felt better on higher dose so ask for that dose to be reinstated. TSH is only slightly low. Also, the lab notes only say "May require . . . ' . So your return of Hypothyroid symptoms needs to be taken into account, surely?
Is there anyone you can take with you to GP appointment for moral support? And take a written list of symptoms with you.
Ask your GP to test Vitamin D, Calcium, B12, Folate and Ferritin. (Get print out of earlier tests results - are you sure Vit D was ok?)
You are experiencing a return of Hypothyroid symptoms so can ask, again, to be refered to an Endocrinologist. Check the list on the Thyroid UK website - if you can, print a copy to tick off and take to GP.
It would be helpful to have free T3 tested if you see an Endocrinologist you could ask for this.
DID you have an Ultrasound scan of your Thyroid 30 years ago?
I had my first in 2011. That showed Thyroiditis. I had my 2nd scan last year - & now also have a 1cm cyst on Thyroid and a 2mm growth on a Parathyroid so will have repeat scans to monitor.
If you are having throat symptoms you could try asking again for the scan or a referal to ENT.
Write a new post then more people will see it: mention this post and give the March results as above. Give your dose (present and history as you have on here). List your symptoms .
What time of day was the blood test done? Make sure future blood tests are early morning & fasting.
Restless legs is often low magnesium, extremely common, especially if vitamin D is low
Essential to test vitamin D, folate, ferritin and B12 regularly, at least annually....but ESPECIALLY after any dose reduction
Recent obsession by GP's to reduce Levothyroxine If they only test TSH
On Levothyroxine we frequently have suppressed TSH and just testing TSH or TSH and FT4 is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Ask GP to test vitamins and antibodies
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
OMG! I didnt know half of this. Thank you so much for the information. I am feeling like i can go forward now. Thank you again and have a lovely weekend.
Thank you slowdragon for your info. Everybody on here is so helpful and I am gathering so much information. This will help me enormously going forward.
Always be suspicious if told results are 'fine'. Get copiesand post them withvthe rangesfor others to comment on. Ranges are important as they differ from lab to lab so we need the ones given with your results. Doctors often say things are fine if they are in range but it's often where in the range that is important.
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