Endo visit ..am i missing sth??: Just back from... - Thyroid UK

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Endo visit ..am i missing sth??

louise52 profile image
17 Replies

Just back from endo...she is happy with my results and says 100mgs seem to be fine for me. FT3 bring under range not important apparently as it doesnt really mean anything??

My FT3 in Aug was 3.6 but id say that was a blip . Its now 1.2 ( 1.3-3.6 ref) . FT4 20 (top of range 22) and TSH 1.75 . My ferritin is was 14 last test so im supplementing. I was just wondering could my dire ferritin be affecting the conversion of FT4 and should i hope to see an improvement as my ferritin increases?? Ive never had ferritin levels this low before so im not sure if maybe thats the explanation and not a conversation issue??

Thanks in advance!

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louise52
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17 Replies
greygoose profile image
greygoose

Good lord! I wonder who ties their shoe laces for them! Of course it means something. I means you're still hypo because you can convert T4 to T3 very well. In which case, yes, 100 mcg levo is more than enough, but you need T3 added to it. :(

greygoose profile image
greygoose in reply togreygoose

And, yes, your low ferritin could well have something to do with your poor conversion. And if your ferritin is low, your B12, folate and vit D could also be low. Have you had those tested?

SeasideSusie profile image
SeasideSusieRemembering

Louise52

FT3 bring under range not important apparently as it doesnt really mean anything??

And here we might have the first contender for 'Stupid doctor of the Day' award.

T3 is the most important hormone. T4 is a storage hormone, and some converts to T3. T3 is the active hormone needed by every cell in our bodies, it is like the fuel that drives a car, without the fuel the car grinds to a halt. So an under range FT3 is extremely important, it will bring many unwanted symptoms and keep you hypo. So measuring FT3 is important, and being in range is very important.

could my dire ferritin be affecting the conversion of FT4 and should i hope to see an improvement as my ferritin increases??

Yes. For thyroid hormone to work (that's our own as well as replacement hormone), and for conversion to take place, ferritin needs to be at least 70, preferably half way through range.

The fact that you have Hashi's is going to make your results fluctuate.

Rapunzel profile image
Rapunzel in reply toSeasideSusie

And here we might have the first contender for 'Stupid doctor of the Day' award.

:D :D :D

If I were a gambling woman, we won't have to wait very long for a brace at least to chose between x

SeasideSusie profile image
SeasideSusieRemembering in reply toRapunzel

Any guesses on the total number for today's competition?

I'm torn between 3 and 4 :D

Ah but, we had a plethora of them yesterday, so maybe 2 or 3 :D

Rapunzel profile image
Rapunzel in reply toSeasideSusie

Now, if we had a statistician on board, we could have a quasi ali-can competition like alangardner used to run; spread over say, three months 'Doctor Stupid count over this quarter'

Three numbers for me, perhaps not far off four...

Kell-E profile image
Kell-E in reply toSeasideSusie

That doc has my vote!

louise52 profile image
louise52

I knew it was but was really surprised when she said she wasnt concerned with it!! I feel dreadful still v unwell but she wasnt attributing it to the thyroid as TSH and FT4 good acc to her and FT3 inconsequential. I really feel i cant deal with much more of this. My Vit B12 is 472 (206-1000), FERRITIN 14.8 (23-393), Folate 12.4 (4.5-20)? Havent gotten Vit D back yet. Ive been supplementing B vits and D but not ferritin. Since my Hashis dx 17 yrs ago my ferritin has always been 20s maybe 30 and gp and endo say this is fine when i question it?? My family have had enough of me questioning the gps and Consultants and i got labelled with an anxiety disorder and told to stop trying to find answers that arent there??? I think the perimenopause has hit me for 6 cos im so depleted in all areas.

SeasideSusie profile image
SeasideSusieRemembering in reply tolouise52

Louise

Doctors don't appear to be taught the importance of T3 and the FT3 test in hypothyroidism, they seem to think it's only relevant in hyperthyroidism. I can't actually get my head around that!

Your ferritin in below range, your GP must do something about it. See cks.nice.org.uk/anaemia-iro... and scroll down to

Interpreting ferritin levels

People who are not pregnant:

......

•A serum ferritin level of less than 15 microgram/L confirms the diagnosis of iron deficiency [Smellie et al, 2006; Goddard et al, 2011].

........

but you are also going to need a full blood count so make an appointment to discuss this.

If your ferritin has always been low you may have an absorption issue which is quite common with Hashi's.

**

Your B12 is a little on the low side, you might want to consider supplementing to improve that. An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

I keep my level at around 1000. Sublingual methylcobalamin lozenges 1000mcg are what's needed if you wish to self supplement, along with a good quality B Complex to balance all the B vitamins.

**

Is the diagnosis of Anxiety Disorder in your medical record? Who diagnosed it? GP or an Endo? I would dispute it if so, they are not qualified to diagnose it, and ask for it to be taken off your record until you have a diagnosis from a doctor qualified in mental health issues, you would need to see a psychiatrist or psychologist I believe.

louise52 profile image
louise52 in reply toSeasideSusie

Gp has put me on galfer 305mgs x 1 daily for 3 mths. Ive been veggie 23 yrs so id say that explains my iron issues as i wasnt supplementing!!! Only educating myself now when everything went bump! I have been supplementing B12 but in a multi B Solgar so will get the sublingual. Endo and other drs..my psych doesnt agree at all...she thinks my issues all stem from my thyroid and perimenopause and my anxiety has stemmed from being unwell for 18mths + and not improving and when i question anything its thrown back in my face!! In fairness my gp tries her best but admits she doesnt have enough knowledge.

SeasideSusie profile image
SeasideSusieRemembering in reply tolouise52

Louise

Do you have a diagnosis of iron deficiency anaemia? Have you had any of the other tests done - iron panel and full blood count. With a below range ferritin you should. Also, a below range ferritin should really be dealt with by an iron infusion which will bring the level up within 24-48 hours, tablets will take many months and just 1 a day isn't much.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

louise52 profile image
louise52 in reply toSeasideSusie

Tks yes i had fbc done and it was all normal..hgb was 12.2...only on iron a wk..taking it with vit c and 4 hrs away from eltroxin...tks so much for all the info..ppl on this site really are a godsend

louise52 profile image
louise52

In contrast my TPO were 60 so elevated but not hugely (> 35)

SeasideSusie profile image
SeasideSusieRemembering in reply tolouise52

Hashi's is Hashis, raised antibodies confirm it, it doesn't matter whether they are just over the limit or in the hundreds, they fluctuate anyway so next test they could very well be in the hundreds, or they could be below the limit, it's still Hashi's.

Kell-E profile image
Kell-E

That's funny! She can't get all of your numbers in range using only levo, so she's happy with 2 out of 3? And she discounts the only one that actually matters!

And your conversion is hideous, as you know. Yes, you need to improve your ferritin and probably some other things too. Even then you will probably need to add T3 to the picture.

louise52 profile image
louise52 in reply toKell-E

Tks for the reply...decided with hubbie im going to focus on getting deficiences sorted and keep testing FT3 myself and broach it with her at nxt visit in 12 wks time. Thank you for all your replies. I know all this myself from reading but just needed some support as all so called professionals disagree with me!

louise52 profile image
louise52

Can i ask one more question? From looking at my blds ive never been stabilised is this normal with Hashis? Some blds on same dosage were hypo. To be honest from symptoms alone i feel ive always been hypo from dx as always v symptomatic so never adequately replaced on T4 treatment. I just need to find an endo here in Dublin that will recognise my T3 levels as dire and work with me to increase them.

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