Results advice and a few more questions, warning long post!

[lili_robinson_1]

I was diagnosed as hypothyroid in 1994. About 8 years ago I asked to be referred to an endocrinologist as I was feeling under medicated although blood tests did not agree. She agreed for me to try T3 which was a game changer. Since then I have been on Levothyroxine 100mcg and Liothyronine 20 mcg.I had always assumed that I have autoimmune thyroid disease . I am a retired radiologist so my thyroid has probably been informally imaged (by me!) more than average. Initially it was enlarged but eventually shrunk away to almost nothing. which would fit with thyroiditis.

Compared with many on this forum I an very lucky as I have a very supportive GP and I feel generally well. However recently I have had a few symptoms which could be attributable to hypothyroidism : Loss of lower eyelashes ( I have had very little body hair since initial diagnosis), tinnitus,burning foot pain - treated as neuropathy with gababpentin - general intermittent joint pains and insomnia. I realise all of these could be due to my age/other causes but having come across this forum decided to get the full range of blood tests done privately as I have been wondering if I am a poor converter and if changing the ratio of T4:T3 might help these symptoms.

These are my results from Medichecks:

THYROID STIMULATING HORMONE *0.007 mIU/ L 0.27 - 4.20

FREE THYROXINE 15.1 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 83.7 nmol/L 59.00 - 154.00

FREE T3 4.47 pmol/L 3.10 - 6.80

REVERSE T3 15 ng/dL 10.00 - 24.00

REVERSE T3 RATIO 19.4 15.01 - 75.00

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES 10.2 IU/mL 0.00 - 34.00

HAEMATOLOGY

Vitamins

ACTIVE B12 *194.8 pmol/L 25.10 - 165.00

FOLATE (SERUM) >19.98 ug/L 2.91 - 50.00

25 OH VITAMIN D 75.5 nmol/L 50.00 - 200.00

BIOCHEMISTRY

Inflammation Marker

CRP - HIGH SENSITIVITY 2.2 mg/l 0.00 - 5.00

Iron Status

FERRITIN 25.3 ug/L 13.00 - 150.00

Interestingly I have more blood tests done through my GP the day after the medichecks sample was taken as she wanted to do some other test relating to my joint pains. These results were:

Anti-CCP antibody level2.000 U/mL - 6 U/mL

Rheumatoid factor9.000 IU/mL - 15 IU/mL

Thyroid function test

Serum free T4 level13.000 pmol/L 9 - 25 pmol/L

Serum TSH level

Serum free T3 level4.400 pmol/L 3.5 - 6.5 pmol/L

Serum ferritin15.000 ug/L 10 - 420 ug/L

Serum folate19.900 ug/L 2.6 - 17.3 ug/L

Serum vitamin B12414.000 ng/L 220 - 700 ng/L

Serum vitamin D 83.000 nmol/L - nmol/L

I have obtained these results via on line access so haven't discussed them yet.Some of the ranges seem to be oddly presented. No result is given for TSH in the latter set - maybe it was not measurable. Also Vit B12 was raised on initial set and normal on second - who knows what that means. Both bloods were taken in the morning in a fated state!

So here are my questions.....

I don't have raised thyroid antibodies. Do they disappear once they have destroyed your thyroid or do I not have autoimmune disease?

My TSH is very low although my free T4 and free T3 are low to mid range. Would reducing T4 +/- increasing T3 help to balance blood test and maybe help the symptoms I am having?

My RT3 and RT3 ratio are within the normal ranges given by medichecks but I would value another opinion.

I take 1000iu Vit D sublingual in winter - should I increase that ?

My ferritin seems lowish - would iron supplements help - should I discuss that with my GP?

Finally I am trying to prepare for the eventuality that T3 is not prescribed. Luckily my daughter lives in Berlin and I have a cousin in Amsterdam so should be able to get supplies abroad if necessary - I will do another post asking for advice on how to do this

Thank you for your patience!!

[cwill]

The B12 tests are different, one active and the other conventional? Are you supplementing b12?

[lili_robinson_1 in reply to cwill]

I take a multivitamin which contains 2.5 mcg -said to be 100% Nutrient Reference Value - whatever that means!

[cwill in reply to lili_robinson_1]

My understanding is that once you supplement B12 the conventional test most commonly performed by GPs is of less use and we need an active B12 test. Can’t help further I’m afraid.

[greygoose in reply to lili_robinson_1]

2.5 mcg vit B12? That wouldn't raise the B12 of a gnat! That's one of the problems with multivits, they don't contain enough of anything. Terrible waste of money! Bet it's cyanocobalamin, too, when what you want is methylcobalamin.

It would have been a good idea to have your B12 tested before supplementing anything - along with vit D, folate and ferritin. If you start supplementing before testing, you can miss Pernicious Anemia.

[lili_robinson_1 in reply to greygoose]

I have been taking multivitamin for some years. I started when I commenced fasting 5:2 5 years ago - only way I can maintain my weight! Vit D was commenced on advice of endocrinologist I was referred to about thyroid. I only take it in winter assuming I get enough sunshine in the summer ( I am a keen gardener) May I will up it a bit. Definitely need to reassess supplements!

[greygoose in reply to lili_robinson_1]

Yes, I think you do. If your multivit contains iron, then you won't be absorbing any vitamins. Maybe you should carefully read the ingredients and check them out.

[greygoose]

I can't answer all your questions, but...

- Antibodies do disappear once your thyroid is completely destroyed, but there's no reason to suppose that this is your case just on the basis of these blood tests. Antibodies fluctuate all the time, and with antibodies, the old adage is very true : you can't prove a negative!

- TSH is irrelevant once you're on thyroid hormone replacement, unless it goes high. Having a low/suppressed TSH means nothing. You probably would benefit from increasing your T3, but it has nothing to do with balance, just a case of having more available T3.

- RT3 is also irrelevant. And ratios are for healthy people, not hypos.

- You probably would benefit from increasing your vit D in winter.

- Your ferritin is too low, but I doubt your doctor would understand that.

- I don't think you can get T3 without a prescription in either Amsterdam, nor Berlin. Try Turkey.

Hope this helps.

[lili_robinson_1 in reply to greygoose]

Thanks for your prompt reply - very helpful. Would an English prescription be accepted in Germany or would I need a private one. I think my GP would oblige. My daughter could bring the tablets with her when she visits.

[cwill in reply to lili_robinson_1]

If you get a prescription then you can contact a German pharmacy direct to order.

[lili_robinson_1 in reply to cwill]

Thank you for both replies

[greygoose in reply to lili_robinson_1]

You're welcome.

[SlowDragon Administrator]

Burning feet might be improved by taking a good vitamin B complex. Possibly also sublingual B12 lozenges

It could be peripheral neuropathy

drgominak.com/sleep/vitamin...

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Usually multivitamins not recommended, especially if have iodine in

Ferritin is dire. Needs to be around 70

If you like liver eating once a week should help improve. Or can buy iron supplements.

Vitamin D too low. Looking to be around 100nmol. Try 3000iu and retest in 2-3 months. Better You do a vitamin D mouth spray

See SeasideSusie many replies covering vitamin supplements in detail

Have you tried gluten free diet?

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, T3 twelve hours prior to test delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Is this how you did the test?

Your FT3, FT4 and TT4 are all on low side

Personally I would try increasing Levo first.

With a private prescription ordering online from Germany is easy. PM me if you want more info

[Saya85]

Hi,

My first inkling was it sounded similar to me recently and I was suspecting b12/ferritin/vit D deficiency in your case. Most of which is true and I agree with above advice it’s all quite low.

The b12 was the odd result but I think both previous answers make sense- poss biotin caused the high result and the other conventional test isn’t the same test.

Tsh is quite low but free t4&t3 appear low too- increase in dose may help- but if your vit D/ferritin/b12 is an issue then conversion t4 to t3 would be affected anyway.

With regards to antibodies- have they been very high in the past? If they were just above reference range In past it may never have been autoimmune. Are there big fluctuations ? As previous posts have said it’s unlikely that your thyroid is completely damaged... however if you are on a gluten free diet it may have put you into remission! (Hopefully)

I thought I had a good handle on all of this but the recent b12/vit D/ferritin Etc stuff has been a revelation. As was recommended to me- if you post the vitamin /extra blood test results on pernicious anaemia forum also they may be able to help you in more detail.

Lots of useful advice there too! Especially regards to varying tests results

Good luck