Understanding the way forward

[cogacc]

I am an 81 year old female. My Thyroid/2nd goitre was removed about 7 years ago. Prescribed Levothyroxine and seemed to recover OK for a while.

About 5 years ago experienced tiredness, and a long-standing viral respiratory infection. GP referred me to consultant but usual blood tests etc rated as normal. GP suggested CFS. Not much further help from GP’s

Looked at alternatives and met an Integrative & Regenerative Medicine Practitioner towards the end of 2020. She had herself experienced the problems of no thyroid and failure of conventional treatment to help. She organised blood tests. March 2021 she deduced from these results that T4 was not converting to T3; that my adrenal gland was overworked and that my gut was not functioning as well as it should.

On her advice I used metavive with adrenavive alongside levothyroxine (usually around 100mmg) successfully from mid-2021.

In August 2023 I consulted the GP about feeling lightheaded. He advised me to stop taking Stematil regularly and prescribed Beta-hisitine for 16 days.

A week later I suddenly experienced violent trembling with a significant drop in blood pressure. Attended A & E Dr said blood test & ecg results did not account for what happened. GP reviewing the data concluded that the FT4 reading was high 19.9 and suggested reducing levothyroxine to 75 mmg. A week later the GP revised this to 50mmg.

My husband and I discussed the situation and I stopped both metavive and adrenavive thinking that I may have moved to hyperthyroidism.

The feelings of trembling, anxiety, hot flushes, no stamina, etc., have continued throughout September and October, thankfully the trembling has gone but light headedness is a frequent symptom. I have been retaking Adrenavive and Cytoplan Thyroid support supplement for several weeks and am gradually feeling better.

Blood test results that I have are:

Date Test result

24/02/21 TSH 0.11 µU/mL

T4 free 2.04 µg/dL

T4 total 9.98 µg/ml

Thyroglobulin Abs 0.15 IU/ml

T3 free 2.22pg/ml

T3 total 77.92 ng/dL

TPO 11.0 IU/ml

Iron 128.49 µg/dL

Ferritin 185.6 ng/ml

Vit D >70 ng/ml

Vit B12 446.0 pg/ml

Folate >20 ng/ml

18/09/23 Ferritin 218 ug/L

B12 491 ng/L

Folate 9.4 ng/L

20/09/23 TSH 0.04 mu/L

Free T4 11.9 pmol/L

FT3 2.3 pmol/L

28/09/23 Thyroglobulin 4.3ng/mL

Total T4 4.9 µg/dL

Free T4 2.4 ng/dL

Date Test result

Free T3 2.1 pg/ml

TSH 1.1 µU/ml

TPOab 17 IU/ml

28/09/23 Cortisol AM30 27 nmol/L

Cortisol Noon 12 nmol/L

Cortisol Evening 4.7 nmol/L

Cortisol Night 2.8 nmol/L

DHEA 27 pg/mL

26/10/23 TSH 7.7 mu/L

Free T4 12.2 pmol/L

We have a GP appointment on 13th November at which it is likely that an increase of levothyroxine to 100 will be proposed; we suppose on the basis of the raised TSH. But the T4 is in the reference range, which would imply that the demand signal of high TSH is for T3, which has tested consistently low. Whether the GP will or can prescribe T3 we are not sure. We thought of getting T3 and experimenting with small doses to see if this theory is correct. Our daughter a now retired A & E consultant felt that we ought to consult an endocrinologist privately before experimenting or presenting the GP with a fait accompli demand for T3 supplementation

Any thoughts and advice please? Also is there a list of helpful endocrinologists to consult?

We appreciate the input that is made here to help those with thyroid related problems

cogacc

[Jaydee1507 Administrator]

Please add reference ranges for each test. These are important as they vary from lab to lab.

[DippyDame]

Once we have reference ranges we can analyse your labs properly....please add..

But, reading your post I'd guess your ( cellular) T3 is low....this may have been slowly reducing until you now feel the impact

GP suggested CFS

frontiersin.org/articles/10...

Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study

I'm afraid medics are generally ill informed re thyroid disease....and why so many patients arrive here in need of help.

Unless FT3 is over range there is scant possibility that you are overmedicated....or hyperthyroid.

T3 needs to be understood before use, it is a powerful hormone and requires low and slow titration

50mcg levo/T4 is only a starter dose and if your conversion is poor this will not generate enough T3.

Your Vit D is too low....aim for at least 100ng/L

Vit K2 should be taken with Vit D3...it directs Vit D to the bones so preventing calcium building up in soft tissues and arteries.

"In reference range" means nothing....we aim for the exact point within the range where symptoms are relieved.

Endos, not GPs, prescribe T3....."demanding" a treatment will most likely be met with rejection!

You could request a consultation with an NHS endo or have a private consultation.

But first I'd suggest to ask your GP to increase from 50mcg, to 75mcg, maintain that steady dose for 6 weeks and test again....you may need to repeat this depending on new labs and clinical evaluation

So...you may just need considerably more T4 to help or you may need to add a little T3.

If your thyroid hormones are low hormone replacement is required.....thyroid supplements are clutching at straws. They may help a little but rarely in the long term.

Have you had both thyroid antibodies TPO and Tg tested.....no ref range added...checking for Hashimoto's.. It can cause thyroid levels to fluctuate.

TSH is not a reliable marker it fluctuates through the day

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

FT3 followed by FT4 are the important markers, telling us the status of one's thyroid function

I'm aged 78, have a very long history of hypo symptoms, wrong diagnoses and wrong medication....so empathise with your problem. I had to start reading extensively!

A supraphysiological dose of T3-only started to relieve many of these symptoms.....but I doubt you need to go there!

The answers lay within this forum....not in the surgery of either GPs or an endocrinologist!

Good luck!

[cogacc in reply to DippyDame]

Thanks for your detailed reply, We have a lot to learn!

I have re-posted the test data I have with the ranges appended.

The antibody reslts for test taken on 28/09/23 were:

Thyroglobulin 4.3ng/mL (3.0 – 40) ( I think this is what is referred to as Tg)

TPOab 17 IU/ml (0 – 150)

[DippyDame in reply to cogacc]

As I suspected your FT3 is miserably low...no wonder you feel unwell.

Increasing levo dose and optimising nutrients should make a difference but that may still not be enough. Your T4 to T3 conversion is poor.

Next test will reveal any changes in the Frees....and point the way forward

You may very well need to add some T3

Post new labs if you wish advice

[SlowDragon Administrator]

26/10/23

TSH 7.7 mu/L

Free T4 12.2 pmol/L

Just testing TSH and Ft4 completely inadequate

Obviously we need ranges on Ft4 and Ft3 results

Get 25mcg dose increase in levothyroxine

Retest in 6-8 weeks

Meanwhile B12 and folate need improvement

What vitamin supplements are you taking

[cogacc in reply to SlowDragon]

Thank you for your prompt reply. I have reposted the test data with reference ranges added. I hope that this helps.

Blood test results that I have are:

Date Test Result/range

24/02/21 TSH 0.11 µU/mL (0.3 – 20.0)

T4 free 2.04 µg/dL (0.57 – 2.34)

T4 total 9.98 µg/ml (3.4 – 13.5)

Thyroglobulin Abs 0.15 IU/ml (0.00 – 2.0)

T3 free 2.22pg/ml (1.6 – 6.0)

T3 total 77.92 ng/dL (54.0 – 235.0)

TPO 11.0 IU/ml (0,00 – 100.0)

Iron 128.49 µg/dL (15.0 – 250.0)

Ferritin 185.6 ng/ml (8.00 – 500.0)

Vit D >70 ng/ml (20.0 – 112.0)

Vit B12 446.0 pg/ml (200.0 – 1500.0)

Folate >20 ng/ml (3.4 – 30.0)

18/09/23 Ferritin 218 ug/L (23.0 – 300.0)

B12 491 ng/L (187.0- 883.0)

Folate 9.4 ug/L (3.1 – 20.5)

20/09/23 TSH 0.04 mu/L (0.35 – 4.94)

Free T4 11.9 pmol/L (9.9 – 19.1)

FT3 2.3 pmol/L (2.4 – 6.0)

28/09/23 Thyroglobulin 4.3ng/mL (3.0 – 40)

Total T4 4.9 µg/dL (5.0 – 10.8)

Free T4 2.4 ng/dL (0.7 – 2.5)

Free T3 2.1 pg/ml (2.4 – 4.2)

TSH 1.1 µU/ml (0.5 – 3.0)

TPOab 17 IU/ml (0 – 150)

28/09/23 Cortisol AM30 27 nmol/L (7.0 – 30.0)

Cortisol Noon 12 nmol/L (2.1 – 14.0)

Cortisol Evening 4.7 nmol/L (1,8 – 8.0)

Cortisol Night 2.8 nmol/L (0.33 – 7.0)

DHEA 27 pg/mL (106 – 300)

26/10/23 TSH 7.7 mu/L (0.35 – 4.94)

Free T4 12.2 pmol/L (9.0 – 19.1)

We will follow up the increase to 75 mcg levothyroxine as suggested.

Vitamins taken at the moment are:

Vitamin C about 4 g per day throughout the day

Vitamin D 4000 IU per day at breakfast time. I also take Magnesium as magnesiun citrate solution (Mag 365) late evening - about 3g in hot water.

Do you have recommended doses for Vitamin B12 and folate supplementation?

Thank you for your help it is much appreciated.

[SlowDragon Administrator in reply to cogacc]

B12 491 ng/L (187.0- 883.0)

Folate 9.4 ug/L (3.1 – 20.5)

Do you have recommended doses for Vitamin B12 and folate supplementation?

Yes

A separate daily B12 as well as daily vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[TiggerMe Ambassador]

It looks like your fT4 was near the top of the range 28/9 but your fT3 was below range, by the 26/10 your fT4 was low in range so your fT3 will likely also have dropped even lower.

You certainly need an increase in Levo but your fT3 has always lagged behind which suggests low conversion, really you need to add some Liothyronine once you have got your fT4 levels up

Add in a good B Complex like Igennus Super B Complex or Thorne Basic B

Do you take K2-MK7 with your Vit D? Better for your bones 🤗

Worth asking for a referral to NHS Endo or if you can afford finding one on the Thyroid UK list