Hi All! I am post RAI by maybe 5 years now, so NO Thyroid active right now. I have a lump now growing under my chin up for investigation - GP wanted a scan, but nothing will be done without visiting the Consultant Endo first.
Had my bloods done, and the results are here - but I noticed that they are suggesting to reduce my Thyroxine! Now I see that the TSH is 'below reference' which to me is not a problem - I do not NEED any Thyroid STIMULATING Hormone since I have NO ACTIVE THYROID anyway - so why would this be of interest?!? My Free T4 (9.6 ) to my mind is actually quite LOW in the scheme of things.
My 'Serum C reactive Protein Level (XaINL) is 4.6 mg/L (0.0-5.00) seems on the high side too.
I note that Mean Cell Haemoglobin level (XE2pb) says 'Below Range' at 27.4 pg (28.0-34.0) but although this is stated, it doesn't say - requires attention?
All the other things are bang on the middle of the reference ranges. Too many pages to copy and put up!
I know I am going to have a fight on my hands to stop them lowering my doses of Thyroxine and am worried. I have used this site to argue my case before as I am having T3 as well, because of continued weight gain and lethargy - I at least can now function with this although my preference would be INCREASING my thyroid meds to be honest, hoping to get a bit more 'oomph'!
I am currently on:
75 Thyroxine plus 25 Liothyronin (T3)
I take B12, Vit D throughout the winter months and have to take Meds for Arthritis (Meloxicam).
Any helpful advice would be most welcome, but certainly something to fight with should they decide to try and lower my meds as I just know that will end in me not being able to even get out of bed, never mind the brain fog!
Cheers, Jackie.
I am 62 year old female, past menopause and not taking anything other than the above!
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jimjim
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You are right to ignore your TSH - your dose of replacement hormones is too low as your FT4 is at the bottom of the scale, so I would imagine your Free T3 will most probably be as well.
In order for us to feel well FT4 and FT3 should be towards the upper part of the range, not around the bottom as your FT4 is.
You know more than your Endo. Ask for more T3 to be added to your T4. If he says anything about the TSH being low, say why do thyroid cancer patients have to have a suppressed TSH. Also say,' my FT3 hasn't been taken and considering that's the most important one you don't understand why. Due to the low FT4 you cannot have sufficient FT3 circulating and your heart and brain dont need T4 but all of your receptor cells need T3. You don't want to have complications due to low FT3. See what it says re FT3 in the link below:-
You can say you are a member of Thyroiduk.org.uk and have had advice from the NHS Choices for info re thyroid gland. (I am not medically qualified and have hypothyroidism which was undiagnosed/untreated)
If you'd like to become a member of TUK this is a link
Thanks so much for your response. These were routine bloods by the GP, so they are 'not allowed' to seek a T3 reading....!!....Last year I recall my T3 was actually quite high, but the T4 was about this level. They were considering dropping some of my T3, (never thought to UP my T4!) because it was a 'bit high' but I fought this all the way as it was the first time I was out of the sluggish brain fog and actually felt able to get up and do stuff for a long time.
They want to keep the medication to a minimum to protect the heart, as too much puts a strain on it apparently.
No doubt I will be sent for more 'in depth' bloods to reveal the T3 levels - so will see how I get on.
Any further advice on what to ask will be most appreciated!
I've always understood that taking T3 means that your TSH will be suppressed and could even be zero and your FT4 can be as low as halfway in the range though yours is lower but the only important thing to test is FT3. The lab may not realise what you are taking or have no idea of the importance of that reading.
The MCH test can often be out asxit isxa ratio of two other blood results so if one of those is within range but near one of the extremities itvcan have that effect. So if other bloods are ok I wouldn't worry about that one.
Have you ever had your vit D measured? We are often low in that as we have a thyroid problem but it might be worth having it tested as it gets lower as we get older as well.
Thank you for responding!¬(We always feel so helpless!) My Vit.D was low last year, hence the agreement for me to be given supplements throughout the winter months, which I am continuing with. I will update this after my appointment on Monday!
I'm in a similar position if my results lower in next few weeks then my Levo may be stopped. I will be doing what Shaws suggested and printing out advice re NHS Choices and Thyroid UK. I think my results will be worse anyway as not on enough meds and have lots of symptoms and pain.....but it's a cruel way to treat patients , that life saving hormones could be snatched away. The members here will give you excellent advice. It's ridiculous that the blood results after treatment are analysed rather than how the person feels. I discharged myself from the Endo recently when she suggested TSH should be 10 before treatment. Shame on them!!!! Take good care and keep posting you will get there. Jane xxxxx
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