Need some advice please: So a little over a month... - Thyroid UK

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Need some advice please

Mknerr profile image
9 Replies

So a little over a month ago I wanted to go from levo to ndt and I decided not to yet because my blood work showed that I needed to increase my levo and get that under control first before I take the ndt plunge. I went from 88mcg to 100mcg of levo 5wks ago, I went and got some new blood work and these are the results

Free t4 1.10 (0.61-1.37)

Free t3 2.7 (2.8-4.4)

Thyroid microsomal antibody -tpo- 88.0 (0.0-18.3)

Vit. B12 139 (211-911)

Folate 9.75 (>5.38)

Iron total 37 (50-150)

Total iron binding capacity 387 (270-440)

Iron saturation 10% (20.0-50.0%) 2yrs ago I was diagnosed with graves disease and chose to take the radioactive iodine to kill the thyroid, my body has a hard time staying stable and my levo amount is always changing up and down. I know that the iodine is a slow gradual killing, but I am thinking that I have hashimoto disease because of the ups and downs, has anyone else have these symptoms, I mean is it even possible to have hashimoto already? Or is this because of my low iron and b12, I see that that the antibodies are quite high. If I fix my iron and b12 will the antibodies go down? I still really want to go from levo to ndt but maybe i should look into doing a t3 add on with levo. All suggestions would be greatly appreciated all advice is wanted, my main goal is to get my heart under control, its up and down and all around and i hate it. Thank You kindly.

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Mknerr
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Saggyuk profile image
Saggyuk

Hi there, do you have a tsh? Your T3 levels are too low meaning you may not be converting T4 into T3 and may need T3 meds as well as levo or NDT might improve just as well as also contains T3 but yes you might want to wait until other issues are resolved.

I have little knowledge on graves to be honest. TPO antibodies are highly associated with hashimotos but can also be found in graves. I do know that some people have been misdiagnosed as graves when they actually have hashimotos as you can have what's called hashi flares wherein levels go high causing hyper issues. Radioactive iodine treatment isn't always 100% successful in killing the thyroid completely but I would carefully read up on everything before going for a second dose as no thyroid can cause more problems than you bargained for.

However, you have other issues anyway and these need to be cleared up as may be the cause of your symptoms.

You are indicating you have iron deficiency, do you have a full blood count and ferritin result? Iron deficiency will cause breathlessness and heart palpitations.

You are also B12 deficient. This can cause neurological problems and permanent damage and will also cause breathlessness, heart palpitations and dizzyness. You need be tested for pernicious anaemia to rule this out.

Considering you are deficient in the two above, it may also be good to get a Vit D test.

Both of these issues need to be corrected asap and both impact thyroid.

Is there any reason for these deficiencies, are you vegan, do you not eat much at all, do you have digestive/absorption issues?

Saggyuk profile image
Saggyuk in reply to Saggyuk

Oh should mention, things like coeliacs/gluten intolerance can cause low nutritional levels, extreme fatigue, problems with absorbing thyroid meds and hormone resistance and going GF can also help lower thyroid antibodies :-)

Mknerr profile image
Mknerr in reply to Saggyuk

My ferritin is 7 (7-292) I did get a blood count and i am low on hemoglobin and hematocrit. No I dont eat much I will eat dinner every day but thats about it. I dont like taking iron cause it hurts my stomach, and I dont like taking any pills in general cause I dont like taking man made drugs, I know it sounds weird but i dont like pills, i am 37yrs old and levo is the first pill i have had to take religiously everyday and i hate it and i think my body hates it thats why i want to go natural as soon as i can. It also seems that i have to take an iron pill, vit.c pill, selenium pill, multi vitamin pill, vit.d pill with vit.k in it, vit.b pill and probably something else also i just cant think of it. And on top of all that you have to remember when to take those meds so they dont interfer with each other...what a pain in the butt,. And its even rougher when you dont feel well and you have brain fog. Now i am ranting and should stop. Thank you for talking to me Saggyuk knowing is power and i need all i can get.

Mknerr profile image
Mknerr in reply to Mknerr

I have also had endoscope and colonoscopy in feb. and they came back healthy.

Saggyuk profile image
Saggyuk in reply to Mknerr

Did they actually do a coeliac biopsy or just to have a look?

Unfortunately, this does not rule out non-coeliac gluten sensitivity which I have been diagnosed with and cause just as many problems :-)

Saggyuk profile image
Saggyuk in reply to Mknerr

THis confirms you have iron anaemia and you must get this sorted. You can try ferrous fumerate which is easier on the stomach than ferrous sulphate or you can ask for a transfusion to get you going. Taking with a vit C effervescent drink will help absorb the iron and prevent the stomach issues caused by it or even porridge will stop it hurting your stomach. There are also liquid ones that do not hurt. It is not a drug with unknown crazy substances in it, you are just replacing what you haven't got and you will remain very ill until you do take it but that is up to you. You don't need to take everything but you certainly need to supplement these specific deficiencies that are making you ill??

Multi vits are crap anyway lol!

Either way, you are likely deficient because you only eat once a day and therefore cannot hope to get enough from your diet. This is where things like iron and b12 come from, our bodies cannot make it themselves. However, now you are deficient you will never get the levels back up through food as just not enough in it to get you there. Once you have got your levels up though, you can maintain your levels by eating properly. I expect you've been low a long time which is why you feel so bad.

I should remind you that B12 deficiency can cause permanent and irreversible neurological issues including brain damage and spinal issues so you must deal with it. Just look at a few videos of those with b12 deficiencies who can no longer walk or talk properly on google.

You will be low on everything if only eat once a day and may even be the initial cause of many of your health problems. For example, iodine deficiency is the world's most common cause of thyroid failure.

I know it's hard and I don't like taking pills either but these two deficiencies (iron and B12) will cause you not to be able to think straight and your other symptoms so if you resolve these two, you should feel much better and more able to deal with it :-)

LAHs profile image
LAHs in reply to Mknerr

For what this is worth, I take many of those supplements in pill form and I am not an enthusiastic pill taker either. You can substitute some of the pills by eating the appropriate food - that's what I do. I eat fruit instead of a VitC pill, I eat Brazil nuts instead of a selenium pill, I eat red meat and spinach instead of an iron pill and so on and so forth. Some things however you will need but there isn't a sufficient natural form, e.g. VitD, yes you can sit out in the sun but from my personal experience that didn't work and I live in California, so I take a pill. Don't think of them as medication, think of them for what they are: a food supplement. I know the embarrassment of taking out a little packet of about nine "pills" - but I just tell whomever I am sitting with that they are vitamins.

Oh and getting back to your original comment. I think that you are not converting your T4 to T3 - which is essential. You have lots of good advice here, start with getting all of those vitamins up to par, then work on the thyroid deficiencies. Selenium is an essential catalyst for the T4 to T3 conversion, so be sure to keep that one up.

eeng profile image
eeng

I know it's awful to have to take so many pills but for most of them once you have the levels up to something healthy you should be able to maintain them with a healthy diet. I take a 10,000iu vitamin D supplement that just looks like olive oil in a capsule (it may be some kind of fish oil I suppose. They look natural and have no taste and are easy to swallow. Vitamin B12 can be taken as a spray or a patch I believe, so that saves a few pills. The iron is harder to get into your body, but it will make you feel much better (less fatigue, heart pounding etc). Currently you have so little iron in your body your heart is having to work very hard to get the oxygen to your cells because you are low on haemoglobin. That's not good for your heart long term. Ideally you would take ferrous fumarate 210mg 3 times a day until your levels are healthy, then stop or drop to one a day. Ferrous sulphate is very hard on the stomach and less easily absorbed.

You need to view this as a phase of your life where your body needs you to take supplements, but most of them aren't long term pills to take.

silverfox7 profile image
silverfox7

Your levels are too low so you need a dose increase. The aim is to get both your FT4 and FT 3 in the top third of the range and even in the top quarter. Best to retest in 6 weeks to make sure you are the best you are going to be on a particular dose as well.

Gettingvthecotger things you were tested for optimal will make you feel better and help with any conversation problems but the changes won't happen overnight. After 6 months my conversion was almost spot on.

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