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.
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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.
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.
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
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.
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
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.
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.
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 :
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
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.
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.
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
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
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
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.
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