Help needed with these counts and Antibodies - Thyroid UK

Thyroid UK

128,505 members151,086 posts

Help needed with these counts and Antibodies

ainslie profile image
33 Replies

Hi

Looking for advice please on these counts for my partner who has Fibro, she has been under treatment from a Naturopath and is feeling much worse and her labs got worse. Any advice welcome.

The treatment consisted of 4 drops of iodine a day based on patch test 8 hours?, plus over 1g of Phenyalanine daily and 3 Adrenavive No 1 a day, 2 in morning and 1 in afternoon. She seemed okay on the Adrenanvive but things began to go wrong after increasing the dose of iodine and starting Phenyalanine. Labs below.

TSH Oct 2017 1.6 (Range 0.27-4.2) TDL

TSH Oct 2021 was 2.32

TSH March 2022 is 3.08

Iodine 4 drops and Phenyalanine started 22 Aug 2022

TSH 31 Aug 2022 is 5.09

FT3 for same dates above starting from top is 4.8,4.4,4.5, and after 2 weeks of Iodine and Pheny Ft3 is 3.4. (Range 3.1-6.8) TDL

FT4 for same dates is 19.5,19.,15.7, and 13.4 after two weeks of treatment. (Range 12-22) TDL

Thyroid peroxidase was 25.8 in Oct 2021 and after recent treatment is 37.5 (Range 0-34)

Thyroglobulin Antibody was <10 in Oct 2021 and after treatment is 12.8 (Range 0-115)

I hope thats is clear enough to read , I have it on a Excel spreadsheet but couldnt see how to upload it.

When the last lab was done she was feeling awful so stopt the Iodine and Phenyalanine but is still on 3 Adrenavive One . She is feeling a better almost a month on but concerned re the antibodies etc. My plan was to tetest the thyroid labs in the next few weeks to see if her counts went back to pre treatment or maybe her thyroid was packing up anyway. Not sure of best way forward re treatment. We are thinking about starting slowly on Armour or ERFA and support the Adrenals with the Adrenavive ? and Pregnenolone or low dose hydrocortisone until thyroid levels are up. Not sure if we should try testing for iodine, the patch test allegedly showed low at 6 and 8 hours but the patch test results never seemed to improve at 2 or 4 drops a day which raises a question on its validity, I am also aware too much iodine can suppress the thyroid. Her iron, B12 and Vit D are all optimal. All advice and opinions welcome as my partner really needs some help with this and we are still at the head scratching phase.

33 Replies
SeasideSusie profile image
SeasideSusieAdministrator

ainslie

The treatment consisted of 4 drops of iodine a day based on patch test 8 hours?

The patch test has been debunked. The most reliable test for iodine is the non-loading iodine test, this is offered by Genova Diagnostics.

Taking iodine can make matters worse. It used to be used to treat hypERthyroidism before the current radioactive iodine treatment. It can cause hypOthyroidism or make hypOthyroidism worse.

If iodine deficiency is found then there is a treatment protocol to follow so consulting with an experienced practioner is desirable. If your practioner has only used the debunked patch test I wouldn't say they're necessarily experienced.

Was a 24 hour cortisol plus DHEA saliva test done before starting Adrenavive?

Phenyalanine - I don't know what this is or what it is used for. Can you clarify?

The way you have given the thyroid results doesn't make them very clear and is quite confusing.

Iodine 4 drops and Phenyalanine started 22 Aug 2022

Was there a thyroid function test done immediately before starting these?

Hopefully I've got this right:

March 2022

TSH: 3.08 (0.27-4.2)

FT3: 4.5 (3.1-6.8)

FT4: 15.7 (12-22)

Was the above the most recent set of results before starting the iodine/Phenyalanine?

Aug 2022 - 2 weeks after starting iodine/Phenyalanine

TSH: 5.09 (0.27-4.2)

FT3: 3.4 (3.1-6.8)

FT4: 13.4 (12-22)

Were all the thyroid tests done under the same conditions that we advise:

* No later than 9am

* Nothing but water before the test

* No biotin/B Complex for 3-7 days before the test

If so then you can see that the iodine/Phenyalanine has made things worse.

We are thinking about starting slowly on Armour or ERFA and support the Adrenals with the Adrenavive ? and Pregnenolone or low dose hydrocortisone until thyroid levels are up.

Why the pregnenolone or hydrocortisone?

Why a naturopath and why not a private thyroid specialist?

She is feeling a better almost a month on but concerned re the antibodies etc.

The antibodies suggest possible autoimmune thyroid disease (unless the iodine/Phenyalanine has triggered something), and with raised antibodies once the TSH goes over range that should prompt a diagnosis and treatment with levothyroxine from a GP.

ainslie profile image
ainslie in reply to SeasideSusie

thanks Seaside Susie

you have the labs and dates correct, the tests were done at 9am fasting etc but she was on B Complex which she took after the test but was on B complex for all the thyroid tests going back.

She had a saliva test and blood cortisol test prior to starting iodine etc and all showed high, our understanding of this was that the adrenals were working over time. Before the Adrenavive the practicioner had her on Metavive before the iodine etc which seemed to stress her out and so the idea was to build up adrenals with Adrenavie and then the Phenyalanine was supposed to help her thyroid make thyroid?

The reason for the Naturpath was because he is known for Thyroid and I couldnt find a private thyroid specialist, I wish I could , do you know good ones any anywhere. I used to see Dr Peatfield but of course he is retired and Skinner died and I tried to contact John Lowes partner Gina Honeyman but she seems awol too?.

the idea of the Pregnenolone or hydrocortisone is that I suspect her adrenals are weak and was concerned adding thyroid to weak adrenals would not be wise?

The antibodies suggest possible autoimmune thyroid disease (unless the iodine/Phenyalanine has triggered something), and with raised antibodies once the TSH goes over range that should prompt a diagnosis and treatment with levothyroxine from a GP.

Oh, I was under the impression that GP's wernt so good at treating thyroid issues and that we are better on NDT than levo or does the possible autoimmune issue change that.

Phew its a bit complicated :-)

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

when EXACTLY did she start Metavive?

and when did she stop

ainslie profile image
ainslie in reply to SlowDragon

I am not exactly sure but will ask the question, thank you :-)

ainslie profile image
ainslie in reply to SlowDragon

She started Metavive 11 on 28 May 2022 one tab, increased to two tabs on 15 June 2022 and stopt it feeling awful on 24th June, the assumption was her adrenals were struggling so he backed off the Metavive and addeded Adrenavive 1 and Iodine and Phenyalanine which I undertand is a amino acid

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

March 2022

TSH 3.08 

Ft4 15.7 (12-22)

Ft3 4.5 (3.1-6.8)

She started Metavive 11 on 28 May 2022 one tab, increased to two tabs on 15 June 2022 and stopt it feeling awful on 24th June, 

22 Aug 2022

Iodine 4 drops and Phenyalanine started

31 Aug 2022

TSH 5.09

Ft4 13.4 (12-22)

Ft3 3.4. (Range 3.1-6.8)

Her iron, B12 and Vit D are all optimal. 

is this correct chronological results

March ….not conclusive for needing levothyroxine

FT4: 15.7 pmol/l (Range 12 - 22)

Ft4 37.00% through range

FT3: 4.6 pmol/l (Range 3.1 - 6.8)

Ft3 40.54% through range

Metavive…..probably started too high and increased too quickly

Aug 31st results…..likely thyroid levels lower due to inappropriate iodine supplement

No folate result?

What are the most recent vitamin D, ferritin and B12 results

ainslie profile image
ainslie in reply to SlowDragon

Most recent Vit D is around 180 and Ferritin around 130, will need to check on B12 but if I remember correctly it was at max

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

vitamin D is a bit high

Has she reduced to maintenance dose

Need folate tested

ainslie profile image
ainslie in reply to SlowDragon

I thought 180 was near optimum as range is up to 200?

SeasideSusie profile image
SeasideSusieAdministrator in reply to ainslie

Top of range isn't necessarily optimium. According to the NHS lab I use for my Vit D test, the one who offers a fingerprick test to the public for £29, over 220 nmol/L is risk of toxicity.

The Vit D Council, Vit D Society and Grassroots Health all recommend a level of 100-150nmol with a recent blog post on Grassroots Health recommending at least 125nmol.

ainslie profile image
ainslie in reply to SeasideSusie

ah okay thank you, Dr My hill recently told us to take 10,000iu daily to help with arthiritis and osteoporosis, my partner is on 7500iu so 10k would put her up near 200, my head hurts with all the info :-)

SeasideSusie profile image
SeasideSusieAdministrator in reply to ainslie

So are you patients of Dr Myhill?

ainslie profile image
ainslie in reply to SeasideSusie

no, I saw her once 15 years ago but buy her products and recently had a query about her joint mix products, I don’t think she consults much these days

SeasideSusie profile image
SeasideSusieAdministrator in reply to ainslie

She doesn't need to go up to 200, 150nmol/L is the upper limit according to those 3 dedicated Vit D websites.

ainslie profile image
ainslie in reply to SeasideSusie

thankyou

SeasideSusie profile image
SeasideSusieAdministrator in reply to ainslie

ainslie

Oh, I was under the impression that GP's wernt so good at treating thyroid issues and that we are better on NDT than levo or does the possible autoimmune issue change that.

Many GPS are clueless about treating hypothyroidism but many people do get on just fine with Levo you just don't see them on thyroid forums as they have no problems and are getting on with life.

NDT doesn't suit everyone. It didn't suit me and I was a patient of both Dr P and Dr S, tried Armour, generic NDT, T3 alone, a mixture of NDT and T3, and neither of them could make me well. It was down to me to discover my problem and find that optimising my nutrients, discovering poor conversion and finding the right combination of Levo and T3 was the right path for me. So yes, it is complicated.

The autoimmune issue doesn't really change anything. It's the most common cause of hypothyroidism and it's the hypothyroidism that is treated.

She had a saliva test and blood cortisol test prior to starting iodine etc and all showed high, our understanding of this was that the adrenals were working over time.

If cortisol was showing high then Adrenavive is the wrong supplement. Adrenavive is a glandular which contains either the whole gland - cortex and medulla - or cortex only, depending on which version you use. This supplement raises cortisol. To lower cortisol you wouldn't use a glandular. So who suggested Adrenavive, was this the Naturopath?

Seems to me that there is a lot of wrong things might be going on here.

ainslie profile image
ainslie in reply to SeasideSusie

thank you for all that info and interesting story of your own journey. We hadnt considered levo via GP as she seemed to react badly to the Metavive, we expected the path to be very slow increase in NDT while supporting Adrenals. We did the temp monitoring and her counts through the day jumped around a bit as did her morning temps , morning temps were around 36.2. Her sit to stand BP increased by about 5 units. Yes it was the Naturopath that started on Adrenavive after the bad result on Metavive, she has always suffered from anxiety and can get disproprtionally stressed hence the concern about the adrenals.

Earlier on in the thread we talked about a thyroid doc as opposed to a Naturopath and wondered if anyone knows one that is good as we are not sure we have the skills to do this ourselves.

I agree that a lot of bad stuff going on , after 6 months with Naturopath we are disappointed to be feeling worse than at starting.

SeasideSusie profile image
SeasideSusieAdministrator in reply to ainslie

If your Naturopath suggested Adrenavive for high cortisol I suggest you run away and not waste any more money.

As for another doctor like Dr P and Dr S there isn't one. The best thing you can do is make a new post asking if anyone can send you a recommendation in a private message.

There is also a list of thyroid friendly endos, both NHS and private, that you can send for by emailing

tukadmin@thyroiduk.org

Also there is a list of private practioners that you can obtain by filling in the form li ked to here :

thyroiduk.org/help-and-supp...

These lists are not recommendations, you should do your own research before committing to a consultation.

ainslie profile image
ainslie in reply to SeasideSusie

oky thank you for all info :-)

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

High cortisol and anxiety often go together

Like SeasideSusie i saw both Dr P and Dr skinner

NDT really did not suit me either…..too much T3

ainslie profile image
ainslie in reply to SlowDragon

thats very interesting, I thought NDT was the gold standard, I have seen Dr Hertoghe and he put me on NDT 15 years ago, shows we are all diferent

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

vast majority of patients do fine on levothyroxine, especially if dose is fine tuned and vitamin levels optimal

Many people are of course left under medicated and not on high enough dose of levothyroxine

More common to need some T3 added the longer been on levothyroxine, or after total thyroidectomy or after menopause

Approx 10-20% need addition of some T3 ….either as T3 or possibly as NDT

NDT not as flexible as levothyroxine plus T3. Also much more expensive

Even smaller number can only tolerate T3 alone

Perhaps consider trying levothyroxine?

ainslie profile image
ainslie in reply to SlowDragon

okay thanks, thats very interesting indeed, going to retest in 7 weeks after last labs and if still low and therefore maybe eligible for levo will try that first. Yes NDT is getting very expensive, hopefully the GP will be up t the task

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

There’s almost 2 million people in U.K. on levothyroxine

They aren’t all on this forum….most are happily getting on with their lives

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

Extremely unlikely to be prescribed any levothyroxine unless have 2 tests where TSH is over 5 or Ft4 is below bottom of range

TPO antibodies are now very slightly raised since iodine …..but may reduce now stopped

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Suggest getting an Ultrasound scan of thyroid as next step

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

tukadmin@thyroiduk.org

ainslie profile image
ainslie in reply to SlowDragon

thank you for info and links, I also wondered about the point you made re GP not being interested if counts are marginal , lets see what next labs how.

Ditto re Ultrasound, getting anything from the NHS up here in Scotland is hard and slow but will try. I have to admit I dont entirely understand the situation with Hashi or smaller thyroid, if it is Hashi or smaller thyroid is the treatment just the same anyway ie Levo or NDT etc or is it important to diagnose exactly for some other reason.

Ive sent for the list of docs, thank you for that tip.

SlowDragon profile image
SlowDragonAdministrator in reply to ainslie

oh you won’t get ultrasound on nhs

Cost £100 privately

If ultrasound shows no damage, and TSH under 5 and Ft4 and Ft3 midrange and no antibodies….then highly unlikely to get diagnosed with thyroid disease

SlowDragon profile image
SlowDragonAdministrator

suggest she stops iodine

Iodine frequently makes thyroid levels go haywire

See what thyroid levels do once off the iodine

Retest thyroid levels after 6-8 weeks

Meanwhile test vitamin D, folate, ferritin and B12

What’s her diet like

Unless vegan unlikely low in iodine

Genova Diagnostics for iodine test

thyroiduk.org/help-and-supp...

Click on "Read the list of available tests" and on page 3 of the pdf you'll see

Urine Iodine Test:

Specimen requirements: Urine

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.

Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

ainslie profile image
ainslie in reply to SlowDragon

Okay thanks SlowDragon, she stopped Iodine and Pheny after last labs a month ago, diet good and varied, yes the plan was to retest at around 6 weeks , so will do and repost. D. Folate and B12 all very good, thanks for info on Iodine test, will do

SlowDragon profile image
SlowDragonAdministrator

similarly why the Adrenanvive

Did she have cortisol and DHEA test before taking Adrenanvive

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

ainslie profile image
ainslie in reply to SlowDragon

The adrenavive is because she has all the symptoms of weak Adrenals and practicioner thought it wise to build up adrenals at same time as phenyalanine was supposed to build up thyroid

helvella profile image
helvellaAdministrator

I happened across this paper from 2017 - which suggests that phenylalanine might already be raised in fibromyalgia syndrome. Though that is based on the free amino acid.

But I'd be looking further into why phenylalanine is supposed to help. It is outside my experience.

Scand J Clin Lab Invest. 2017 Apr;77(2):93-97.

doi: 10.1080/00365513.2016.1269362. Epub 2017 Jan 12.

Free amino acids in fibromyalgia syndrome: relationship with clinical picture

Valeria Ruggiero 1 , Massimiliano Mura 2 , Enrico Cacace 1 , Benedetta Era 3 , Marcella Peri 4 , Giuseppina Sanna 2 , Antonella Fais 3

• PMID: 28079404

• DOI: 10.1080/00365513.2016.1269362

Abstract

The objectives of our study were to evaluate free amino acid (FAA) concentrations in the serum of patients affected by fibromyalgia syndrome (FMS) and to determine the relationships between FAA levels and FMS clinical parameters. Thus, serum amino acid concentrations were quantified (HPLC analysis) in 23 females with fibromyalgia (according to the American College of Rheumatology classification criteria) and 20 healthy females. The results showed significantly higher serum concentrations of aspartate, cysteine, glutamate, glycine, isoleucine, leucine, methionine, ornithine, phenylalanine, sarcosine, serine, taurine, tyrosine and valine in FMS patients vs. healthy controls. Patients with higher Fibromyalgia Impact Questionnaire (FIQ) scores showed increased levels of alanine, glutamine, isoleucine, leucine, phenylalanine, proline and valine. In conclusion, our results indicate an imbalance in some FAAs in FMS patients. Increased Glu is particularly interesting, as it could explain the deficit in monoaminergic transmission involved in pain.

Keywords: Amino acids; Fibromyalgia Impact Questionnaire; HPLC; fibromyalgia.

pubmed.ncbi.nlm.nih.gov/280...

Also endorsing the reply by SeasideSusie

ainslie profile image
ainslie in reply to helvella

thank you

You may also like...