Hypo post RAI still have symptoms - help with b... - Thyroid UK

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Hypo post RAI still have symptoms - help with blood results

HypoPirateGirl profile image
11 Replies

Hi - pretty new here and been reading posts so got medichecks ultra vit test. Appreciate anyone that can help interpret my results.

I am on levothyroxine 125mcg

I took the blood test fasting, first thing in morning and didn't take my thyroxine for 24 hours before. I also stopped my multivitamin 7 days before so biotin wouldnt interfere with the results.

I also take omeprazole & oestradiol.

Symptoms

Tired, no motivation and irritable... (I sound fun)

Problems with digestion and acid reflux

Results:

CRP Hs: 4.37mg/L (<5)

Ferritin 81.8 ug/L (13-150)

Folate 4.04ug/L (>3.89)

Vitamin B12 active 59.5 pmol/L (>37.5)

Vitamin D 67.6 nmol/L (50-175)

TSH 0.732 ml U/L (0.27-4.2)

Free T3 3.7 pmol/L (3.1-6.8)

Free Thyroxine 18.5 pmol/L (12-22)

Thyroglobulin antibodies 12.3 klU/L (<115)

Thyroid peroxidase antibodies <9 klU/L (<34)

Many thanks in advance :)

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HypoPirateGirl
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pennyannie profile image
pennyannie

Hello HypoPirateGirl and welcome to the forum :

Do you have Graves Disease and when did you have RAI thyroid ablation ?

RAI slowly burns out your thyroid disabling its function and ultimately you will become hypothyroid.

RAI is known to " trash " vitamins and minerals and I think you need some advice on the numbers above, and trust someone will come along in a minute to advise you accordingly.

If you are still under the hospital you will probably be monitored on T3 and T4 blood tests as well as a TSH and if you have been discharged back out into primary care it is essential that your doctor ensures that T3 and T4 blood tests are still maintained.

Your feedback loop is now broken and testing with just a TSH blood test, as seems the norm in primary care will not reflect your true thyroid hormone status.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100T4 + 10 T3 - with T3 being the active hormone that the body runs on and is said to be about 4 times more powerful than T4.

T4 - Levothyroxine is a storage hormone and your body needs to be able to convert the Levothyroxine into T3 and this conversion can be compromised if you do not maintain your ferritin, folate, B12 and vitamin D at optimal levels.

Your conversion of the T4 into T3 is coming in at 5 - just divide the T3 into the T4 result : and most people feel well when conversion is around 1 / 3.5 - 4.5 - with most people feeling better nearer the 1 / 4 ratio or below :

Your conversion will be improved by better levels of vitamins and minerals and you do have room for a dose increase of Levothyroxine as most people need their T4 in upper quadrant of the range to feel well - this increase might just increase your T3 enough for you feel better, but strongly feel after RAI - T4 alone doesn't actually ' do it ' for many people.

If you don't know of the Elaine Moore Graves Disease Foundation website it's worth dipping into : Elaine has Graves and went through RAI in the late 1990's and finding no help or advice with her continued ill heath started researching this poorly understood and badly treated auto immune disease. Elaine was a medical technologist and has now several years later she has written several books and runs on open forum, much like this amazing website where you can ask questions of the community.

I am with Graves, diagnosed 2003 and had RAI in 2005 becoming very unwell about 8 years later. I now manage lingering Graves, thyroid eye disease and hypothyroidism. I too found very little help or advice with my continued symptoms hence my coming on here a few years ago. I now self medicate and buy my own full spectrum thyroid hormone replacement as currently the NHS routinely only prescribe Levothyroxine.

I did manage a referral to an endocrinologist, the first " specialist " I had seen in over 10 years but was refused a trial of T3 in 2018 as my TSH was suppressed at 0.01 - though my T3 was barely 50% through the range and told I was overmedicated and needed a dose decrease of Levothyroxine. I was too ill to keep fighting the system and with the support and knowledge of a couple of books and this amazing website Did it for Myself.

PurpleNails profile image
PurpleNailsAdministrator

Hello and welcome

chorobytarczycy.eu/kalkulator

Above is useful calculator often posted on here as allows you to calculate where you fall in the range. FT4 is 65%, above 75% would be better so are not far off. But your FT3.... I’ll let you do you own calculation, but hint....it’s rather low.

I’m not very knowledgeable on vitamins. I can see they are in range but they might not be optimal. If nutrients are not optimal this will affect conversion.

As you seem to have read up on advice I presume you take your Levo away from food,coffee other medication and supplements?

HypoPirateGirl profile image
HypoPirateGirl in reply to PurpleNails

Thank you for the useful calculator link. I was Looking for this the other day actually.

I do take it away from other foods. Maybe not long enough from The omeprazole.

PurpleNails profile image
PurpleNailsAdministrator in reply to HypoPirateGirl

There’s quite a bit of useful information written on here regarding Omeprazole and other PPIs. As I understand it, it drastically lowers stomach acid necessary to absorb levo and vitamins B12, magnesium in particular. However most hypothyroid patients have low stomach acid which has the same symptoms but requires different treatment.

SeasideSusie profile image
SeasideSusieRemembering

HypoPirateGirl

Your FT3 is only 16.22% through range and your FT4 is 65% through range, they should be balanced, so your conversion of T4 to T3 is poor.

Optimal nutrient levels help conversion and you could do with improving most:

Ferritin 81.8 ug/L (13-150)

This is a good result, ferritin is recommended to be half way through range so this is spot on.

Vitamin B12 active 59.5 pmol/L (>37.5)

Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:

viapath.co.uk/our-tests/act...

Reference range:>70. *Between 25-70 referred for MMA

There is a link at the bottom of the page to print off the pdf to show your GP.

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Folate 4.04ug/L (>3.89)

This is too low.

The Medichecks actual ange is 3.89-19.45.

Folate is recommended to be half way through range so that would be about 12+ with that range.

Once your B12 has been further investigated and either B12 injections or supplements started, you could then add a good quality, bioavailable B Complex (eg Thorne Basic B or Igennus Super B) which will improve your folate level, but it is important not to start this until after further investigation into B12 has been done and supplementing with B12 commenced.

Vitamin D 67.6 nmol/L (50-175)

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 3,500-4,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Supplementing with selenium can also help conversion, 100-200mcg daily

of selenium l-selenomethionine or yeast bound selenium (avoid selenite

and selenate forms).

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

HypoPirateGirl profile image
HypoPirateGirl in reply to SeasideSusie

Thank you so much this is all very useful information I’ve read it several times over and think I understand. I will try to get a blood test from doctor tomorrow.

Assuming they won’t use medichecks is it worth asking them to check folate and vit d or am I okay with these as I can self supplement these?

(Once b12 tested).

Is there a Chance that if these are normal my T4. To t3 conversion might improve or do you suspect I might need t3 anyway?

SeasideSusie profile image
SeasideSusieRemembering in reply to HypoPirateGirl

HypoPirateGirl

If they accept your Medichecks tests they are going to say your folate is within range, as is your Vit D, so they wont do anything about them. Doctors have no idea about optimal levels, if it's in range then they're fine as far as doctors are concerned. So I'd be surprised if they do test them, you might just as well supplement yourself. You can deal with the Vit D now as I've given you the information you need about that, but do wait until after further testing of B12 to do anything about the folate.

Did you check for signs/symptoms of B12 deficiency? Do you have any?

HypoPirateGirl profile image
HypoPirateGirl in reply to SeasideSusie

Yes I do I went through your checklist that you linked to and have lots of those symptoms. Acid reflux (I take omeprazole and cannot be without it), irritable, loss of motivation, sleepy in the afternoon plus other symptoms . I did once have very bad anaemia and had to have an iron injection in hospital so it’s good that my ferritin levels are okay.

Ok good to know I can start on D already. I am thinking to use the Better You mouth spray that includes k2 as that gets good recommendations on this site. Many thanks again.

Do you think this will be sufficient to get my T3 conversion up? And do you think there is room for me to have a thyroxine increase? My GP won’t support that so I’d have to push for endocrine referral so wonder if best to wait until other vitamin levels better.

Thanks again.

SeasideSusie profile image
SeasideSusieRemembering in reply to HypoPirateGirl

HypoPirateGirl

Do you think this will be sufficient to get my T3 conversion up?

That's impossible to answer I'm afraid. It may improve it but whether it's going to balance your T4 and T3 well enough then to be honest I have my doubts as your FT3 is so very low with a fairly reasonable FT4. But one step at a time, especially as you have signs of B12 deficiency so you need that investigated and addressed first.

And do you think there is room for me to have a thyroxine increase?

Yes. There's room to push your FT4 right to the very top of the range, some people need it there to get a half decent FT3 result. Use the following information to support your request for an increase in dose:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

HypoPirateGirl profile image
HypoPirateGirl in reply to SeasideSusie

Hi seaside Susie, I finally got through to my local GP who reviewed the results as per medichecks above. He said they were all normal and didn’t want to do anything further.

As a next step would you have any advice? I am thinking to write a letter and put in the links to all the above around the B12 levels and also my TSH levels / free T3 levels and ask for a referral. Would an endocrinologist be right for both these things or would pernicious anaemia require a different referral?

Should I start a b12 supplement in the interim?

SeasideSusie profile image
SeasideSusieRemembering in reply to HypoPirateGirl

HypoPirateGirl

You said you had many of the symptoms listed for B12 deficiency. Did you list the symptoms you are experiencing to discuss with your GP? With B12 deficiency they are supposed to go by symptoms, not numbers. Read through those B12 deficiency websites, gather as much information as you can and push for your symptoms to take priority over the result.

I believe it would be a haemotologist for B12 deficiency.

I wouldn't start a B12 supplement if you have all those symptoms nor anything to raise your folate level as that will mask signs of B12 deficiency.

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