Advice pls! : Hi again, So just got my first... - Thyroid UK

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Advice pls!

louise52 profile image
19 Replies

Hi again,

So just got my first results on NDT after switching from 100mcgs Eltroxin. On Eltroxin my last results were TSH 1.75 (0.27-4.2) FT4 20 (12-22) and FT3 1.2 ( 1.3-3.6). Been on Naturethroid 6 wks raising slowly to 1 grain and results are as follows TSH 23 (0.27-4.2)FT4 11 (12-22) and FT3 1.4 (1.3-3.6). My ferritin has gone from 14 to 34 in 2 mths supplementing my Vit D 110 and my B12 >2000 as on injections every second day to increase levels due to dietary deficiency. Obvs i need to increase my NDT but i find it diff as i get woozy and anxious. I know my ferritin still not optimum at all. Any suggestions? Also i thought 1 grain 65mgs NDT was equivalent to 100mcgs Eltroxin so was wondering why im so hypo on NDT?? Im so exhausted and v symptomatic getting more exhausted by the day. On a plus note its 1st time in this 2 yr journey that my FT3 has registered on the ref range!! Thanks in advance for any replies x

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19 Replies
SeasideSusie profile image
SeasideSusieRemembering

Louise

You're Hashi's aren't you. Antibody activity - a very hypo phase?

Your ferritin still has a long way to go. Can you eat liver?

louise52 profile image
louise52 in reply toSeasideSusie

Hi my antibodies are 60 so not massively elevated....no cant eat liver im veggie almost vegan apart from drop of milk in my tea!!

silverfox7 profile image
silverfox7

Efore NDT your results indicate that you aren't converting well. You would have done better it you addressed that problem first by checking Vit D, B12, folate and ferritin. These all help your thyroid to convert better if optimal and generally as well as they can overturn some thyroid symptoms. When this is improved then it's much easier to change over to NDT. It can take time though to get your vitamin levels up and can be months if levels low but it took me 5 months and then a relatively easy change to NDT and very stable since.

louise52 profile image
louise52 in reply tosilverfox7

Hi Silverfox i forgot to reply to you. Ive had them all checked. Am supplementing all. Take B12 shot every 2nd day and 5mgs folic acid, galfer everyday and 2000IU VitD3 with K2 everyday too. Vit D good B12 and folate now good. Ferritin increased to 35 from 14 in last 2 mths..hoping its closer to 50 now will retest next wk. Up to 2 grains now but still feel horrendous. Im wondering if its the T3??

Kell-E profile image
Kell-E

1 grain is more like 65 to 75 mcg levo in the real world.

louise52 profile image
louise52 in reply toKell-E

Ok tks Scott hence why im so hypo at the moment!!

Kell-E profile image
Kell-E in reply tolouise52

LOL, yes, it is a possibility :)

judburke profile image
judburke

Have a look at this table from Thyroid UK - I tried to copy and paste it but it went all over the place

thyroiduk.org/tuk/treatment...

It shows the different brands of NDT and the amounts of T4 and T3 per grain

1 grain is still a very low dose for many people. Are you checking temperature and pulse to monitor the changes as you raise. You might be woozy and exhausted due to being undermedicated and having the low ferritin as that takes a while to raise and a while after for symptoms to improve

Is your Dr investigating why your ferritin and vitamin levels are so low? Is it possible that you have a gut absorption problem?

louise52 profile image
louise52 in reply tojudburke

My Dr thinks they are all ok as within range!!! It was only when ferritin dropped from 25 to below range at 14 that i was told to supplement!! Im basically self treating judburke as both my gp and private endo think my levels are normal and its all in my head i.e. anxiety based solely!! Never suffered from anxiety or permanent trembling tinnitus insomnia cranial nerve palasies IBS double vision eye floaters irregular periods no periods numb feet and hands the list is endless!!

Bonniet51 profile image
Bonniet51

I've been on NDT for 30 plus years and it can take approximately 6-9 weeks to get up to the right readings. What is 23 today may be 12 next week but in about 6 weeks it should be at the level it's going to stay at. You will be told by your doctor to come in every 6-9 weeks for more blood work until it is at it's right level. He may increase it but then another 6-9 weeks to see where the levels are. Be patient, it's a long process but, well worth it in the end.

louise52 profile image
louise52 in reply toBonniet51

Tks Bonnie51...you guys all give me hope x

When I started on NDT 1/2 grain to start then two weeks and another 1/2 i.e. one grain then two weeks 1.1/2 grains why not try this you seem under medicated still. It will probably take some time for an improvement to show.

louise52 profile image
louise52 in reply to

Bunnyjean this is how i started..i guess im early days being just 7 wks into it but im feeling more and more hypo by the day and my symptoms have increased. I managed to increase by another half today splitting dose into 3 ...its hard going as ive to take iron obvs 4 hrs away and other supplements but will try this increase for another 2 wks and see how i feel...

in reply tolouise52

Yes OK, sorry that you are feel unwell I hope that you soon improve.

sue_b profile image
sue_b

I was on 125mcg Levo and moved up to 3 NDT over a couple of months with no issues.

louise52 profile image
louise52 in reply tosue_b

Tks Sue...yeah my new thyroid dr thinks i need to be on at least 2 grains but i have a feeling i will end up nearer to 3!!

louise52 profile image
louise52

Just wanted to thank you all for commenting. I appreciate every piece of advice x

Shubbaz profile image
Shubbaz

Looks like you are way under medicated to me. You are supposed to start on 1 grain split dosed am and pm. Increase every 10-14 days by 1/2 grain. When you reach three grains, you should hold that dose for four to six weeks, then retest. You must be feeling terrible, having been on such a low dose for so long. 😢😢😢😢

louise52 profile image
louise52 in reply toShubbaz

Well Shubbaz ive been feeling so unwell for last 2+ yrs this honestly isnt the worst. On Eltroxin i wasnt converting at all...my FT3 wasnt even on 1st point of ref range with suppressed TSH and FT4 in upper range. All fine acc to my endo...FT3 NOT NB!!! So im gonna to just try to see how much i can increase and hope things start improving

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