Conversion issues

[Chantey]

Hi I'm new. I have trouble converting T4 to T3. My FT4 is mostly at the top and FT3 at the bottom. T3 helped me to feel well and this was stopped after endo said it was killing me. No idea what to, go for the DI02 gene test or self treat with T3. Diagnosed hypothyroid 2012. Thanks

[Marz]

Low levels of B12 - folate - Ferritin - VitD can impact the conversion of T4 into T3. Have your levels been checked - if so do you have the results with ranges. Often GP's declare things are fine when in fact they are far from. We see it all the time on this Forum. So I would address that issue first before embarking on T3. What dose of T4 are you taking ? Do you have Hashimotos ?

[Chantey in reply to Marz]

Thank you I take 50mcg levothyroxine

TSH 4.88 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.3 (3.1 - 6.8)

TPO ANTIBODY 884 (<34)

[Marz in reply to Chantey]

So you need an increase of Levothyroxine as your TSH needs to be around 1 when on treatment. FT4 also needs to be higher which in turn could improve the FT3 level. You also have Hashimotos - guess you already know that - so trying to be completely gluten free could help with reducing anti-bodies - also take Selenium.

Now for the results of the B12 - Folate - Ferritin - VitD - when you have them

Have you been on 50mcg for the last 5 years without an increase ?

[Chantey in reply to Marz]

Thanks I have been taking 50mcg levothyroxine for the past 5 years with no increase. Endo gave me T3 in Nov 2015 and I was started on a low dose of 1 quarter a day which helped boost conversion. When taken off T3 I had dose kept the same.

[Marz in reply to Chantey]

50mcg is usually just a starter dose - so you need this increased in 25mcg increments every 6 weeks or so until your levels improve.

[Chantey in reply to Marz]

FERRITIN 12 (30 - 400)

FOLATE 2.2 (4.6 - 18.7)

VITAMIN B12 144 (190 - 900)

VITAMIN D 10.2 (>25)

[Marz in reply to Chantey]

So they are all below range as suspected So what has your GP said and done about these DIRE results ? You must be feeling so poorly. Hashimotos is known to trash absorption of the vitals - so very important to try and heal the gut. Happy to give you relevant websites etc. - but do not want to overwhelm you .... so much to read and learn.

[Chantey in reply to Marz]

I had iron taken away 2 years ago because I had an infusion. Never been back on iron since.

Folic acid prescribed 5mg a day

Vitamin D on loading doses.

Vitamin B12 on loading doses.

[Marz in reply to Chantey]

....on loading doses - what now ? - after the above results were done ? How much VitD and B12 ? Is that injections for the B12 ?

If you are taking lots of VitD it is important to take the co-factors Magnesium and VitK2-MK7 ....

Your Ferritin - stored iron - is below range so you need another FULL Iron Profile to see how things are with your Serum Iron and how it is behaving. No wonder you have poor conversion with these figures

[Chantey in reply to Marz]

FERRITIN 12 (30 - 400)

FOLATE 2.2 (4.6 - 18.7)

VITAMIN B12 144 (190 - 900)

- loading dose injections of B12 once every 3 months. Currently on 2nd.

VITAMIN D 10.2 (>25)

- loading doses 300,000iu weekly. Currently on 3rd.

[Marz in reply to Chantey]

Sorry but having B12 injections every 3 months is not a loading dose - especially if you have neurological symptoms - do you ? Check out the link below to view the neurological signs of B12 Deficiency ....

b12deficiency.info/signs-an...

There are different treatment guidelines for neurological issues.

Once you have finished the loading doses of VitD ensure you have a suitable amount for a maintenance dose and are re-tested at the end of winter

[Chantey in reply to Marz]

Thanks yes I do have neurological symptoms. I will take a look at the link.

[Marz in reply to Chantey]

In which case you should be having B12 injections every other day until symptoms disappear. This is laid down in the Guidelines your GP should have read - from the British Haematological Society for Treatment of Cobalamin and Folate Deficiency. Please google it and bring it to the attention of your GP. Some neurological damage cannot be repaired if left untreated - as I know to my cost.

[Chantey in reply to Marz]

All before supplementing sorry

[SlowDragon Administrator]

Add your most recent results including vitamins and members can advice

T3 removed, advice on how to get it back

healthunlocked.com/thyroidu...

Why T3 should not be stopped

healthunlocked.com/thyroidu...

Typical posts after T3 stopped showing vitamins crash right out

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
[e-mail]

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

Presumably you have Hashimoto's also called autoimmune thyroid disease, diagnosed by high thyroid antibodies

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Getting your Levo dose high enough to bring TSH down to around one (or less) vitamin levels optimal and strictly gluten free are first steps

If FT3 still remains low, then like many with Hashimoto's, you may need addition of small dose of T3

Getting DIO2 gene test has helped some of us keep T3. But others have had it stopped regardless and are forced to self medicating

Swale CCG in Kent is apparently recognises the issues and offering DIO2 test on NHS and if Hashimoto's has affected gut biome too. In both cases they will recognise need for T3. We need to push other CCGs to do the same. More info on Improve Thyroid Treatment Facebook page

[Chantey in reply to SlowDragon]

Thank you I take 50mcg levothyroxine

TSH 4.88 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.3 (3.1 - 6.8)

TPO ANTIBODY 884 (<34)

[SlowDragon Administrator in reply to Chantey]

So your high antibodies confirm you have Hashimoto's.

Ask GP to do blood test for coeliac disease before you change to strictly gluten free diet.

You are severely under medicated. Ask GP for 25mcg dose increase.

Also insist vitamin D, folate, ferritin and B12 are tested

How much Levo were you taking when on T3 ? Dose should have been increased to compensate for loss of T3

How much Levothyroxine were you on before T3 was added?

Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include dire vitamin levels (assuming you have them)

thyroiduk.org.uk/tuk/get_in...

Scottish parliament debate on T3

scottishparliament.tv/meeti...

[Chantey in reply to SlowDragon]

Taking 5mcg T3 with 50mcg Levothyroxine. Endo was happy with results on this.

[SlowDragon Administrator in reply to Chantey]

What were results on this? Both were tiny dose

More typical dose is 100mcg -175mcg Levo plus 20mcg T3

[Marz]

Was your T3 prescribed by your Endo - if so it should not be stopped. Lots of posts here about that pertinent point as posted for you above by SlowDragon - did you read it ?

[Chantey in reply to Marz]

Yes prescribed by first endo who was happy with progress. Then second endo came along and removed it.

[Marz in reply to Chantey]

You may have a case for it being re-instated. Please read the link above from SlowDragon ....

[SlowDragon Administrator in reply to Chantey]

Can you get referral back to first endo

If not you will need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
[e-mail]

But first you must to increase Levo up in 25mcg steps until TSH is around one and FT4 towards top of range . Get vitamin levels tested and supplement to be optimal and for most gluten free diet helps significantly and is often essential

[Chantey in reply to SlowDragon]

Unfortunately my first endo left the hospital and I don't know where she is now.

FERRITIN 12 (30 - 400)

FOLATE 2.2 (4.6 - 18.7)

VITAMIN B12 144 (190 - 900)

VITAMIN D 10.2 (>25)

- loading dose injections of B12 once every 3 months. Currently on 2nd.

VITAMIN D 10.2 (>25)

- loading doses 300,000iu weekly. Currently on 3rd for vit D

iron stopped 2 years ago

taking 5mg folic acid

[SlowDragon Administrator in reply to Chantey]

So you need referral back to haematology for urgent iron infusion

Or

Ferrous fumerate supplements 3 x daily - see SeasideSusie advice in my first reply on needing to take ferrous with vitamin C

B12 Good you are getting injections

You probably should have several close together

Ask PAS healthunlocked

healthunlocked.com/pasoc

Folate should not have been started until after first B12 injection

All these terrible vitamin levels are a DIRECT result of having T3 removed and being extremely under medicated

I suggest you make that clear to your GP

Ask for coeliac testing

You must get dose of Levo increased

[SeasideSusie Remembering in reply to Chantey]

VITAMIN D 10.2 (>25)

- loading doses 300,000iu weekly. Currently on 3rd for vit D

Are you sure? Loading doses usually TOTAL 300,000iu over a period of weeks.

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

If you have been given 300,000iu weekly and are now on 3rd set, I would ask to be retested to ensure you've not reached toxicity level. Recommended is 100-150nmol/L.

[Chantey in reply to SeasideSusie]

Sorry yes total dose 300,000iu

[hdbernalp1979]

Hey i have a conversion problem since nearly 10 years, endo's had been useless, so i decided make my own research reading papers from medical magazines, and use my self as my own mouse lab. I've tried vitamin d without any success, i've tried b12 also without success. I began to see improvements on zinc suplementation, my ebrows and hair began to grow again but tsh and ft4 remained the same, i followed researching and found some papers where vitamin a was used with success to equilibrate hypo and hyperthyroidism, so i gave it a chance and bought a multivitaminc with 6000 ui of retinol(active form of vitamin a,multivitaminic also has iron, iodine and b12)and now since three months ago my tsh went from 5.0 to 2.53, ft3 finally went up. I'm still in zinc and vitamin d,i knew that for vitamin d can make effect needs vitamin a, and vitamin d is needed to prevent vitamin a toxicity. Here is one of the papers that talks about vitamin a and hypo...ncbi.nlm.nih.gov/m/pubmed/2...

[Timsywhimsy in reply to hdbernalp1979]

Hi! Just curious if your numbers continued to improve? I’m subclinical too with conversion issues. I read the vitamin a studies but they used such high doses I was afraid to try it.