[I made the mistake of adding 2 x Metavive for 4 weeks - I was just desperately trying to combat this ever present exhaustion - this has now been removed.]
My endo has stated that this dose needs to be reviewed (understandably due to the FT3 value even though I am still exhausted; but that's not the concern I am raising in this post) as a suppressed TSH causes a risk that her cognitive function may decline. I have never heard of this being an issue for suppressed TSH. I have heard about heart & bone issues.
Please has anyone got any insight into what my Endo is saying and is there any evidence that this is the case. I am seeing him on Friday...I do have the Pulse article, but I don't think that's going to help!
I am ever so confused and concerned that my dose (minus my Metavive mistake) is going to be reduced. I am really wanting my rT3 to be tested, which he said he will not do until both FT4/FT3 are in the upper ranges - which they are - and I am still symptomatic - which I am! Yet he instructs the GP to adjust the dose.
My profile shows my latest vit./min. results etc.
Thank you
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amasufindme
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Hi puncturedbicycle, thank you for you reply, I know that FT3 is too high and that will need adjustment and I don't take my medication before blood draw.
My point is I have never heard anyone talk about suppressed TSH causing a decline in cognitive function.
Do you know of any links to research that I can look at?
Thank you puncturedbicycle I have started to read Barbara S Lougheed (will need more time to digest) and it is very insightful...I do have DIO2 gene polymorphism.
From her work it seems that my endo should be saying high FT3 causes cognition function issues...not TSH!
The last link does actually says that low tsh is associated with dementia (which I have not read elsewhere) but dementia and cognitive dysfunction aren't exactly the same thing. I think it depends on what kind of cognitive issues your endo is talking about.
"TSH causes a risk that her cognitive function may decline." Ask your endo to substantiate that. I think he's talking through his hat.
You must tell him that you were taking Metavive because otherwise he will think you are overmedicated with FT3 over range and will reduce your thyroid meds.
Thanks Clutter, I will let him know my Metavive mistake - I am learning so much - I believe that my Endo, although caring and supportive, is a diabetes specialist not thyroid. In one report, for example, he essentially said that he did not know that DIO2 gene polymorphism causes a conversion issue!
I am just very tired and trying desperately to get better!
Most endos are diabetes experts not thyroid experts. I doubt many endos know about DIO2 gene polymorphisms so I wouldn't hold that against him. You are taking T3 which will overcome any conversion issue and as FT3 is over range you are not having a conversion problem now.
Have you had ferritin, vitamin D, B12 and folate tested? Low/deficient levels can cause symptoms very similar to hypothyroid symptoms particularly fatigue.
I have been working on my vits/mins for a year or so.
I have had my Medichecks results 11/7/2017:
VITAMIN B12 439 pmol/L 140.00 - 724.00
FOLATE (SERUM) 16.34 ug/L 2.91 - 50.00
25 OH VITAMIN D 156.6 nmol/L 50.00 - 200.00
FERRITIN 138.5 ug/L 13.00 - 150.00
I have successfully pushed up Vitamin D3 and Ferritin through supplement and diet. I am concerned about my Vitamin B12 as it seems to have gone down by 40pmol/L over 2 months, since going over to 5g Methylcobalamin from 3g Cyano...wondering whether I cannot assimilate Methyl and perhaps I need my methylation pathway looking at to see if there is a problem as the folate is low too and I take a Jarrow Vitamin B Complex with folate.
They all look fine to me but if you are worried about B12 and folate go to healthunlocked.com/pasoc for advice. Please don't believe some members here who say B12 must be over 1,000 or folate must be top of range.
If you are supplementing vitD I should stop and resume a maintenace dose October to April. If you are supplementing iron you should stop that too.
I agree with Clutter. If you endo claims that supressed TSH affects negatively cognitive function he needs to prove it, not you! You would be at much higer risk of cognitive decline if your tsh was high and FT3 low...
I cannot sleep if my dose of T3-only is too high and lack of sleep does affect my cognitive function, time of reaction, coordination and many other things but it's an individual issue. Hypo brain fog was much, much worse...
Thank you Kitten1978 - I am beginning to truly realize the limitations of my Endo - hopefully if I can speak clearly on Friday at his clinic, he will not touch the dose and test for rT3.
I have experienced cognitive decline at high TSH and low FT3. I truly cannot say if I am cognitively any worse with this high FT3 value. I am trying to push my Vitamin B12 to the upper range...
Also I have experienced exhaustion hypo - so matching my symptoms with the results are confusing to me!
I'm yet to meet an endo who would impress or even just satisfy me with their knowledge. I'll stop here before I go off on a tangent
You can still experience fatigue on a decent dose of T3 if your adrenals are struggling. Fatigue wil affect cognitive functionig.
Low D3 can be the culprit as well. If your vit B12 level is good you could replace it with good vit B complex as different vitamins from B group work together e.g. Jarrow B Right: amazon.co.uk/Jarrows-B-Righ...
Clutter talked about Vits/Mins too and have posted my recent results in my reply to her.
I am reading James L Wilson "Adrenal Fatigue" book after getting my Adrenal Cortisol (6) saliva test done:
WAKING 7.230 nmol/L (6.00 - 21.00)
12:00 5.770 nmol/L (1.50 - 7.60)
14:00 4.970 nmol/L (0.00 - 5.49)
16:00 *5.850 nmol/L (0.00 - 5.49)
18:00 2.350 nmol/L (0.00 - 4.49)
BEFORE BED *3.270 nmol/L (0.00 - 1.99)
D.H.E.A. Sulphate 6.8 umol/L 0.26 - 11.0
Therefore DHEA/Cortisol ratio is high 0.31 (NR 0.015-0.15) it doesn't surprise me as I survived Ritual Abuse as a child and still processing horrific memories at 50 years old. Over two years ago I had a serious bout of flu that floored me and I had to resign from work...been unable to work ever since. I have started taking Adreset now.
Just wanted to add that I really feel for you. Exhaustion was the worst hypo symptom for me. I could have lived with hair loss and oedema if I had had any energy at all.
If it helps, after doing a bit of noodling with my meds (trying different proportions of levo to t3) I now feel much better. I will never win any awards for being energetic but I am doing more physical exercise and managing my home, chores etc feels more doable now than it ever has in the past.
Thank you puncturedbicycle... you give me hope - this exhaustion makes me feel like such an ineffectual human, especially when people ask me why am I not working because I look ok!
Lol, I probably look ok too. I had to give up work during a struggle with depression (more years ago than I care to calculate) and always expected to go back. Even when the depression lifted (years later) I still didn't feel able to return. Now my life is so much better than it used to be and I am able to enjoy it. You'll get there, it is frustrating and takes time.
I should mention I did work on keeping my expectations low and brazening it out (ie not being ashamed) when I was too tired to do anything. If you were able to do everything you wanted to get on with why on earth would you be sitting around?
I call total bullshit on that one!! Ive had graves and therefore a suppressed tsh for most of the last 12 years, during which time I completed two masters and a doctorate!! No-one has ever suggested my cognitive functioning is low. I also would be careful about fear mongering over heart etc. Elaine moore says its not the suppressed tsh that causes anything its d elevated thyroid hormones and the suppressed tsh is just another consequence which in and of itself does not cause issues
Thank you Amasufindme, I agree its a huge concern that your endocrinologist is presenting bad info. I always wonder in these situations - is it something they believe in error or a deliberate misinforming in order to manipulate? I once had an endo tell me that my athletes heart was a sign that my heart would just stop completely which is also bullshit. Its all pretty worrying behaviour in my opinion
I have a dementia called hypothyroidal dementia which is basically caused by not treating my thyroid problems properly. Once I finally sorted out that I needed T3 medication only as my pituitary is not working correctly and I do not have a TSH at all, my dementia improved quite significantly. I was diagnosed with Dementia over 12 years ago and am still functioning well although I do have a problem with numbers and can fall to bits under pressure. If I forget a dose of T3 medication the dementia immediately shows itself but them fades into the background once I start taking T3 again. This type of dementia has only been recognised fairly recently and most Endos have probably never heard of it but getting the right medication to solve the thyroid problems is key.
Thank you for sharing your story heathremr, it affirms that this is a FT3 issue and not a TSH suppression issue...so I need to find a non-confrontational way of presenting my view when I see him on Friday!
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