Which Endocrinologist to see...

[Red63]

Hi, I have ‘normal’ range of all thyroid hormones, as of April and the limited ones the GP did in November. I have had antibodies for 28 years and they’re now in the seriously high range: Thyroglobulin Antibodies @ 522.800 Iu/mL (range: 0.00 - 115.00) and Thyroid Peroxidose Antibodies @ 78.09 Iu/mL (range: 0.00 - 34.00). My mum had Thyroid issues and was on thyroid hormone. I have had at least one episode of Hyperthyroidism a few years ago and now have very low Vit D (I’m on oral mega doses). I understand there may be a link bu5 can’t work it all out (I also had a brain injury). I have asked for a referral to a local Endo but apparently it will be luck of the draw if I get to see either of the two with a special interest in Thyroid issues so I was wondering if there was anywhere else I could go privately. I feel like I’m just being left to wait for my thyroid to fail and am developing other issues that could be related to this without being given any appropriate advice or even treatment. Thanks in advance.

[Clutter]

Red63,

If you're in England you can request the endo you want to see although in some clinics you may end up seeing one of their team instead of the actual person.

Email [e-mail] for a list of member recommended endos when Thyroid UK reopens on 3rd January.

If you post your recent thyroid results and ranges I can advise whether you should be receiving Levothyroxine.

High thyroid antibodies confirm autoimmune thyroiditis (Hashimoto's). There is no cure or treatment for Hashimoto's which causes 90% of hypothyroidism. It's not uncommon for Hashimoto's to cause transient hyperthyroidism in the early days before your thyroid gland progressively fails until it is unable to produce hormone. Levothyroxine treatment is for the low thyroid levels it eventually causes.

Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

There does seem to be a link between thyroid dysfunction and low vitamins and minerals so it is worth having ferritin, B12 and folate tested in addition to vitamin D.

[Red63 in reply to Clutter]

I requested the specific Drs when I saw my GP she said in the U.K. they are no longer able to do this. I had my tests done privately with Medichecks in April:

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE 2.02 mIU/L 0.27-4.20

FREE THYROXINE 15.21 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 97.5 nmol/L 59.00 - 154.00

FREE T3 3.86 pmol/L 3.10 - 6.80

Thyroid Antibodies

THYROGLOBULIN ANTIBODY *522.800

THYROID PEROXIDASE ANTIBODIES*78.09

HAEMATOLOGY

Vitamins

VITAMIN B12 296 pmol/L 140.00 - 724.00

FOLATE (SERUM) 10.57 ug/L 3.89 - 26.80

BIOCHEMISTRY

Inflammation Marker

CRP - HIGH SENSITIVITY 4.8 mg/l. 0.00 - 5.00

Iron Status

FERRITIN 87.8 ug/L. 13.00 - 150.00

Free T3 was a little low but everyth8ngbelse was ‘normal’.

Late November:

GP did the following:

Free Thyroxine @ 17.1 pmol/L range 9.5-21.5

TSH @ 1.22 mU/L Range 0.3-4.7

Serum B12 @ 416 pmol/L range 145-569

Serum Folate @ 8.9 ug/L Range 3.9-26.8

Ferritin @ 74 ug/L No range supplied

My Red Blood Cell count is slightly elevated, 4.90, Alkaline Phosphatase is slightly low and Vit D is at 19 nmol/L extremely low.

[SlowDragon Administrator in reply to Red63]

So how much vitamin D are you taking to improve this?

Have you tried Better You vitamin D mouth spray? It avoids gut issues

You need levels much higher, around 100nmol ideally

Many with Hashimoto's have to take high doses. 5000iu daily is pretty common. (Personally I need even higher dose, in winter especially)

Test twice yearly via vitamindtest.org.uk £28 postal kit

If taking high dose vitamin D, you also need magnesium and vitamin K2

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

[Red63 in reply to SlowDragon]

Thanks for this it’s really good to have some information.

[Clutter in reply to Red63]

Red63,

TSH 1.22 and FT4 17.1 are euthyroid (normal). NHS won't diagnose hypothyroidism until TSH is >4.7 or FT4 <9.5. 100-200mcg selenium is good thyroid support and may help delay progression to hypothyroidism.

B12 416 is unlikely to be deficient but if you have symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice as they're the experts on B12 deficiency.

Folate 8.9 is fine.

Ferritin is optimal halfway through range but >70 - 100 is usually good and unlikely to be iron deficient.

RBC can be elevated due to dehydration. Drink plenty of water prior to your next FBC.

Google "low Alkaline Phosphatase" for possible reasons but if the rest of your liver profile is good one low result is unlikely to be significant.

VitD 19 is severely deficient. What D3 doses have you been prescribed?

[Red63 in reply to Clutter]

I’m on 10,000iu 6 days a week for 3 months then my Dr gave me 800iu a day...I’ve bought some 5,000 is as I read this was a better dose. My Dr didn’t even test for calcium etc until I asked. I will be going to ask for a check on my levels next week.

[Clutter in reply to Red63]

Red63,

Good. 10,000iu x 6 days x 3 months is a good loading dose. If that corrects deficiency then 800iu daily will maintain levels.

[shaws Administrator]

Welcome to our forum and I am sorry yo have a sad story, like many on this forum. I suppose we could say we are the waifs and strays as many aren't being helped/assisted by the medical profession.

Due to you having high thyroid antibodies, this informs you that your thyroid gland is under attack by them and they will continue until you are hypothyroid.

The treatment is the same for Hashimoto's (due to having antibodies) and properly called Autoimmune Thyroid Disease.

Even if your blood tests don't come into the range for diagnosis of hypothyroidism, you should still be prescribed levothyroxine due to having antibodies.

If you email [e-mail] who is in the main office of Thyroiduk.org.uk but they will not be back until beginning of January. She will send you a list of sympathetic doctors/endos. Also request a copy of Dr Toft's Pulse online article wherein he states that if we have antibodies, regardless of TSH etc, we should be prescribed levothyroxine.

All blood tests for thyroid hormones has to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones (when you are prescribed) and take afterwards. This helps TSH to be at its highest as that's all the take notice of.

Request, TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate. You can say to GP that it is your new year resolution to improve your clinical symptoms and you need the results of the above tests to go forward to good health. Those he or lab wont do you can get privately and we have two labs which will do them. (pin-prick tests).

[bluebug]

Your low alkaline phosphatase could be due to the fact your vitamin D level is low - it gets low if you have a vitamin/mineral deficiency. If your other liver enzymes and calcium levels are in range then it is nothing to worry about.