I ve had a long journey getting to this point - whats new ? ! I think I ve had a low thyroid for years. TSH finally went out of range - just - about five years ago and I managed to get thyroxine out of them !
Then changed to much more helpful endo who agreed with me that thyroid was an issue. However due to going bladdsr pain I foumd I could not tolerate thyroxine as it worsened my pain. Kept trying with no success. Tried t 3 which didn't help , increased my HR and made me feel worse. Have finally been trying a new treatment for bladder wvich is helping and I ve managed to stay on thyroxine since January.
I took 50 mg for 6 weeks. Nothing.
Then increased to 75 mg for 7 weeks. Just got bloods taken and here are the results :
TSh 4.8 ( 0.35-5)
T4 12.2 ( 9-24 )
T3 5.2 ( 3.5-6.5)
Ferritin 30 ug/l ( 15-250)
B12 324 ng/l (200-900)
Vit d 53 ( 75-200)
Folate 4ug/l (2-17)
adjusted calcium 2.13 (2.1-2.6)
Calcium 2.19 ( 2.1-2.6)
Before thyroxine :
Sep 2014
TSh 5.9 ( 0.35-5)
T4 11.9 ( 9-24)
I'm really surprised that my t4 hadnt increased and tSh hasn't dropped ? T3 is ok isnt it? So I am converting ok ?
I don't have all tupical hypo sumptoms so have been treading v carefully - Eg high heart rate not low and overheated all the time not cold. Although I have also been diagnosed wity autonomic issues so that could be overriding ?
So - is this just too low a dose ? Or does it suggest anything else going on ( pituitary ? Malabsorption ?)
I Am being investigated for a pituitary adenoma. Is this Anythung to do with it ?
I think b12 still too low ? Should I get the active b12 tesr or just supplement ? What's the gentlest supplement ? And ferritin much too low ?
Is there any way to increase iron and bypass the gut ? I think iron will feed my bad bacteria and I have to be really careful of bacterial overgrowth due to other health issues.
Also vit d low. ?
I don't appear to have antibodies - have been tested couple of times so still unclear as to cause of thyrpid issue. Although I can't get that info from my doctor as I apparently don't really havd a thyroid issue. ! And the cause doesn't make any difference to the treatment apparently!
Any help / thoughts appreciated !
Xx
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Bagpuss
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So what might it mean if my t3 is good but ferritin low ?........ Somehow I am converting ? Am I by passing normal biological processes ? !
What so you think of these results on 75 mg of thyroxine ?
No - they said all tests were fine but I will be asking my endo for pernicious anaemia testing - how does that fit in ? Need to be thoroughly read up when I see him next !
I am not aware of ANY evidence that the standard T3 tests (FT3 or TT3 and using any current day technologies) are inaccurate because they cannot distinguish between T3 and rT3.
If you can point me at anything which is well-founded and says so, I would be interested.
Bagpuss, if the pituitary adenoma being investigated is secreting TSH that may be why your TSH is high. Your FT4 has improved on Levothyroxine although it is still low but your FT3 is surprisingly good.
Supplement 1,000mcg B12 methylcobalamin sublingual lozenges, spray or patches and take a B complex vitamin to keep the other B vits balanced and improve your folate.
Supplement vitD3 2,000iu softgel capsules or spray to improve vitD and soak up as much sun as you can.
I don't think there are sublingual alternatives to iron tablets.
Well I think they are thinking more along the lines of acth srcreting tunour but they don't seem at all Sure aboit those tests either ! I did ask about the TSH being affected but the endo said my TSH wasn't high !
I thought my t4 should have gone up more - it's only shifted from 11.9 to 12.2 ?
I don't feel any better at all so is the dose just too low ?
I found a post from last year that I made whilst on t3 eg my t3 didn't increase whilst on t3 ! So perhaps I should be grateful that my t4 has crept up at all ?!
There is reason to think that haem (also spelled heme) and ferritin iron supplements are more gentle.
The standard forms of iron supplements (sulphate, fumarate, etc.), haem and ferritin are each transported across the gut wall by different mechanisms. With haem and ferritin, the iron itself is securely bound in the supplements and should result in less "free" iron able to cause gut problems.
Supplements of both haem and ferritin are available from iherb.com (I have not looked for UK sources - they might well exist and might be a little less expensive overall).
To everyone who handles iron supplements:
Accidental overdose of products that contain iron is a leading cause of fatal poisoning in children younger than 6 years old. Keep this product out of the reach of children.
The differences in TSH and FT4 are small enough that time of day and day-to-day variation could account for them.
Relatively high but within range FT3 with low in range FT4 and sometimes slightly raised TSH is not uncommon in autoimmune thyroid disease before the thyroid has actually become absolutely unable to produce enough thyroid hormone. It is in such cases as if the body raises FT3 to try to compensate for the low FT4.
Are you taking your levothyroxine on its own with water and away from food, drink, supplements and other medicines?
Yes I take it early morning with water and don't eat or drink for several hours after.
I'm taking antibiotucs and some supplements but well away from thyroxine. I also take a little dose of amytriptyline.
I have gained vast amount of weight hence how they discovered the pituitary adenoma as was tested for high cortidol - cushings - but my thyroid tests also got bit worse and as I said this is the first time I ve been able to tolerate thyroxine but it doesn't appear to be doing much at all after 4 months but results are not much different. Plus I don't feel any better.
Not sure what to think. Was so relieved I cud finally tolerate it and was hopeful.
Maybe I am not absorbing it no. I do seem to have absorption issues but not sure what to do about that as follow a clean fresh diet - low starch - no sugar - spring water etc. Take probiotics and gut supplements and guy tests showed no major issues with yeast or bacterial overgrowth.
Yes, it could be pooling. Although your FT3 isn't as good as all that, you know. It only just scraps past mid-range, whereas most people need it up near the top of the range to feel well.
I'm not sure, but I think that the TSH reacts to the hormone in the cell rather than in the blood, so that would account for your highish TSH. And your T4 could be converting to rT3 which is blocking the T3 receptors in the cells meaning that the T3 is not being absorbed by the cells. The low iron could cause that. But I'm not an expert in all this, it's just my opinion. An rT3 test could be a great help in confirming or disproving my theory.
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