OT (ish).... Low transthyretin and high homocysteine

[Justiina]

Well first of all my life has gotten so boring I finished this 1500 pieces jigsaw puzzle in five days ...

Been on iodine, B12, iron and EAA. Good news is that my TSH and fT4 normalised on iodine. But my fT3 actually dropped which they consider as a sign of DI02 issues and iodine deficiency pushed rapid T4 conversion to T3.

Thyroglobulin had dropped as well yet way over range.

Homocysteine still high , B12 low and transthyretin still very low despite increase in protein intake as EAA.

They consider it's either serious malnutrition caused by ??? causing DI02 issue or DI02 issues causing all problems leading to malnutrition.

Of transthyretin I know and understand very little but most obvious causes are ruled out like liver disease that could also cause high homocysteine.

My inflammation markers including ferritin are all low so it's not that either. Only eosinophil % (11) is above range (1-6%) naturally lowering other white cells, but total white cell in range.

None of my so called hypothyroid symptoms have improved which is natural as ft3 dropped. My both achilles tendons are so sore most of the time that I actually fear walking, tho walking ease the soreness but it comes back after resting.

I am somewhat annoyed as I had high hopes results would improve , but low transthyretin for my doctor is not a good sign. And combo of low transthyretin and high homocysteine doesn't look so good based on what I have been reading.

I am very disappointed in me and my body refusing to respond. I know it's stupid as it has nothing to do with my will power. I have no idea how we will proceed from here as my doctor says that transthyretin has to normalise, it's not optional, cause for it to remain below the range must be found. I don't even know what are the choices if it didn't improve by increasing the amount of protein. My carbohydrate intake is already good.

So in the meantime I either read or do jigsaw puzzles. How boring is that.... sigh

[Hillwoman]

Hi, sorry to hear you're not so well. What dose of B12 are you taking?

[Justiina in reply to Hillwoman]

I am on 1000 mcg which was enough two years ago to bring up my B12 but this time I tried another brand which obviously is not effective as the first brand I used. Not sure if I should try 5000 mcg or go back to spray one which I absorbed very well even though it's just 1200 mcg. I can't understand why the sublingual nugget is not as effective as the spray one.

[Hillwoman in reply to Justiina]

Sublinguals vary in how effective they are. If the spray was effective, I would go back to that in order to get your homocysteine down. High homocysteine indicates low B12 and folate, also possibly B6. It is really important to treat this.

Clearly you don't absorb B12 well, or is it missing from your diet? Malabsorption may be caused by hypo, or pernicious anaemia, or coeliac disease. It's possible to have all of these, of course. Have you considered B12 injections?

[startagaingirl]

Hi - I presume all these doctors who are going for more and more exotic and/or obscure tests are private? Or is that just me being cynical? High homocysteine is usually because of low vit b12 and/or folate - have you any actual figures for these? I have never even heard of transthyretin and ferritin being low is not a good thing when thyroid function is concerned.

How about going back to basics and giving us a full set of tsh, ft4, ft3, vit d, vit b12, folate and ferritin and see what they show, the actual figures with their ranges, not just a medic's opinion of them. It appears to me that you are being driven down a very deep medical rabbit hole for whatever reason and there really shouldn't be a need for that.

Gillian

[Justiina in reply to startagaingirl]

Transthyretin transport thyroxine and retinol. (Basically it could mean less thyroxine and vitamin A transported into brain ) transthyretin (prealbumin) could indicate low protein intake so it's reflecting nutritional status.

Low ferritin is not good of course but as it's also used as inflammation marker it supports other inflammation markers that are low. Otherwise it if course mean iron is low and that needs to be fixed.

Yes they are private but that's my only choice as public health care only takes full blood count and as that comes back good they do nothing. This private practice is the first doctor ever even testing my nutritional status. They do limited set of tests that are cheap because I can get tested in public health care and they charge less than private lab when you have doctors order.

Reason why I didn't include my test results ,( I know them it's not just what doctor tells me,)is that I don't think anyone here has that experience as these doctors. I mean the levels and values have very much relevance as the root cause is unknown. Tsh and ft4 for example seem to reflect to iodine where ft3 dropped which like Greygoose explain does make sense if it is DI02 issue.

I am not undermining yours or anyone else's experience or knowledge, I have learned so much from this forum but in this current situation numbers are very irrelevant as they only indicate malabsortion and it's clear I need to stay on supplements. Which comes difficult as I do not have money to all so if whatever wrong is not fixed i end up in very bad situation which is why these doctors try to find the root cause. Protein deficiency was a lucky guess based on my symptoms and medical history but it turned out to be wrong. Tough and disappointing.

So I was just more so updating my situation as everything is in progress.

[startagaingirl in reply to Justiina]

Thank you for that lesson, but I think you may have missed my point. You seem to be going for obscure tests - that actually are of very little value unless you have all your basics at optimum levels - in preference to the basics. And quite clearly you don't have all the basics optimum since your homocysteine is high. There is no point chasing rainbows over rough ground if you have no shoes on!

You are asking us for advice, and yet you don't seem prepared to share the basics we need to give proper advice, saying instead that your doctors know better - am I correct in my perception of what you are saying? I really don't mean to be rude in any way, but if they are actually that skilled, then why are you still struggling? Again you say protein deficiency was a "lucky guess" that turned out to be wrong - so maybe it is me but I wouldn't consider that lucky - I would consider it a shot in the dark!

If you have been reading posts here for a while, you would have seen that actually your faith in the expertise of doctors relative to that available in this group, is very much not borne out by the reality that we see day in day out. What we see continually is doctor after doctor loudly proclaiming that they know what is best for the patient when actually they are keeping them ill. For instance - you say your ferritin is low and say that is good because it shows a lack of inflammation. However, if it is actually below optimum level, then it won't support your thyroid. So low is not necessarily good.

You say increase in protein intake hasn't helped some obscure measure, but increasing protein won't help anything if you can't absorb it because your stomach acid is low or your gut has been damaged by a food intolerance, for instance.I see that you are gluten and dairy free but what about something else? Personally I also have to eliminate soy. It certainly sounds like you have absorption problems since your b12 is also allegedly low.

I think you could do a lot better than to keep throwing money at doctors who appear to be guessing and delivering obscure measures without knowledge of the basic numbers. But that is your choice.

Good luck

[greygoose]

Have you been diagnosed as hypo? If so, you probably have low stomach acid, which will make digestion and absorption of nutrients difficult, leading to nutritional deficiencies.

Were you tested for iodine deficiency before supplementing it? If not, you should not be taking it. Iodine supplementation is complicated, and needs an expert to over-see it. Doesn't sound like your doctor is an expert in anything.

Iodine deficiency does not 'push conversion'. And, it wouldn't be able to if you had the DIO2 abnormality. What happens is that the thyroid produces more T3 than normal, and less T4, in order to conserve iodine - T4 needs 4 atoms of iodine, and T3 only three. So, if you were deficient in iodine, and now have normal levels, plus the DIO2 gene problem, then it's normal that you are showing signs of poor conversion.

So, it would be the poor conversion - caused by the DIO2 issue - causing low stomach acid, causing mal-nutrition. That seems the logical explanation to me. But, have you actually had your DIO2 gene tested?

[Justiina in reply to greygoose]

DI02 test will probably be next in line now that fixing nutrition only normalised TSH and ft4 and dropped thyroglobulin.

At this point they are just guessing as tests has to be limited because of my financial situation. They try to figure out what tests are necessary and what can be left out.

Iodine deficiency has been tested before and with this doctor the supplementing has been very careful starting from 30 mcg and very slowly increasing up to 150 mcg. They do not support high dosing.

When I started with this doctor they had high hopes that malnutrition was the root cause of all which then would have been fixed by careful supplementing as just food never contain enough and can't restore vitamins/nutrients just by eating as you know.

Thanks for explaining how id affect, I remembered it wrong as I remember reading about it ages ago from some blog that id increase conversion. My doctor only mentioned the id and poor conversion but as I thought I knew what it means I didn't even ask lol

And now it makes sense to me as well!

Will see. I am very much confused anyway as these doctors actually do something. ...