Appointment with a new consultant 🎉🎉🎉🥳🥳🥳🥳

[Rowing2]

Cant quite believe it, but I have another appointment to see a different consultant. I think when I saw the last one who was pants , they hadn’t cancelled this one, so I’m seeing this as a good omen……especially as it’s on Friday 13th ( was originally on the day the consultants were on strike) . I am now on 50 mg levo and 12.5 of lio. They are hell gent in getting my tsh levels higher, even though looking back they have always fluctuated quite dramatically even when on levo only. My latest bloods are below. Any feedback for my appointment would be so appreciated. Btw I feel absolutely rubbish.

[Jaydee1507 Administrator]

Please add thyroid results.

[Rowing2 in reply to Jaydee1507]

sorry I sent the wrong one before.

Words

[Jaydee1507 Administrator in reply to Rowing2]

Your FT3 is not looking too bad at 63%, however your FT4 is bottom of the range. Most people on a combi dose need 100-125mcgs Levo along with T3.

If you can get Levo increased then thats the way forward.

How are your vitamins looking?

[Rowing2 in reply to Jaydee1507]

Hi there, thank you so much for your reply.

Serum calcium 2.32 (2.2-2.6)

B12 227(190-910)

Folate6.6(3.3-99,999)

Iron 13.3(15-56)

Parathyroid antibodies 1,200

Vit d 88 (50-99,999)

Thyroid peroxidase abnormal ( doctor says but expected????)

Xxxx

[SlowDragon Administrator in reply to Rowing2]

vitamin D good

No ferritin result

Iron is deficient

B12 and folate far too low, need significant work improving.

What vitamin supplements are you currently taking

vitamin levels are poor in part because you are on inadequate dose levothyroxine

Get dose increase in levothyroxine to 75mcg ….retest in 6-8 weeks

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

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

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

[Rowing2 in reply to SlowDragon]

Hi slow dragon. Always appreciate your input. I actually can’t see my ferritin anywhere. 🙈 I was on a higher dose of levo and lio and the gps attitude is to reduce everything whatever the consequences to how I actually feel as my tsh level was lower and that’s all they are interested in. I also think and correct me if I’m wrong, but taking a higher dose I think if lio made my goitre reduce in size and I feel is getting larger again. The last consultant who told me I was reducing my life span by taking any t3 that that was rubbish and it naturally Willy get smaller over time( if that’s the case why would anyone hv it removed). Oh forgot to mention I also have hashimotos. Hi I normally take all the supplements you told me some time to and bought all the ones you recommended, but I wanted a true reading of what my body was doing so stopped them about 2 months before my bloods for this coming appointment. I am also concerned about the thyroid peroxidase results as this has been for the last few times and nobody seems to address it. Same as iron, in my notes although it’s under, the comment is no further action required 🤯

[SlowDragon Administrator in reply to Rowing2]

Hashimoto’s = high thyroid antibodies

They aren’t the disease ….but the hoovers clearing up after an attack

Ways to reduce attacks and therefore antibodies

A) be on high enough dose levothyroxine and T3 to suppress your own thyroid output completely. That usually means taking high enough doses to maintain Ft4 and Ft3 at least 60-70% through range - this also usually results in lowering TG antibodies

B) many , many members find strictly gluten free and/or dairy free diet slowly reduces TPO antibodies

C) maintain OPTIMAL vitamin levels for good conversion of Ft4 to Ft3

In future always get vitamin levels optimal and maintain at optimal levels in run up to any blood tests or consultation

As an example I originally had extremely high TPO and TG antibodies at diagnosis 30 years ago. (Highest endo had ever seen)

22 years later when I joined this forum I got full thyroid and vitamin testing done. Both antibodies remained high on just levothyroxine and had dire vitamin levels. Terrible conversion rate Ft4 top of range….but Ft3 bottom of range

2015 - started working on improving terrible vitamin levels

2016 - went strictly Gluten free - TPO antibodies started to reduce

2017 - T3 prescribed and TSH dropped to 0.01. Then TG antibodies started to slowly reduce.

2022 Summer went Dairy free …..TPO antibodies dropping further….now virtually within range

I still need significant ongoing vitamin supplements everyday to maintain OPTIMAL vitamin levels and never ever eat any gluten or dairy

After much experimenting with over all dose, different brands, number and timing of doses…… I maintain Ft3 and Ft4 at around 70-80% through range

Apart from T3 prescription, none of this was done with help of any medic.

It was only through the shared knowledge on this forum that I regained my health and now lead normal life.

As a bonus I have managed to loose half the weight I had gained (5 stone)

[SlowDragon Administrator in reply to Rowing2]

Thyroid peroxidase abnormal ( doctor says but expected????)

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

if you are not already on strictly gluten free diet….

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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

While still eating high gluten diet ask GP for coeliac blood test first

as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Post discussing gluten

healthunlocked.com/thyroidu...

[Rowing2 in reply to SlowDragon]

I’m so impressed you’ve managed to loose weight. How amazing. Btw it was my plasma parathyroid that was 8.9 (1.85-8.49)

[SlowDragon Administrator in reply to Rowing2]

have you recently been supplementing to improve a low vitamin D level?

Or is vitamin D naturally at 88nmol

Request GP test vitamin D, parathyroid and calcium together

parathyroid.com

[Rowing2 in reply to SlowDragon]

That’s natural result.

[SlowDragon Administrator in reply to Rowing2]

Good vitamin D without supplements is unusual , especially with Hashimoto’s

Are you in U.K. …..or are you living somewhere very sunny?

And with high PTH (parathyroid) levels possibly would expect low vitamin D

ncbi.nlm.nih.gov/pmc/articl....

Request further investigation

[Rowing2 in reply to SlowDragon]

Honestly slow dragon I’m going mad. Thank you for making me double check, it’s actually now 57 not 88 🤯🤯🤯🤯🤯🙈

[SlowDragon Administrator in reply to Rowing2]

So improving low vitamin D may resolve high Pth

Suggest you cautiously improve vitamin D by taking 1000iu vitamin D mouth spray

Get GP to retest PTH, vitamin D and calcium in 2 months

[Jaydee1507 Administrator in reply to Rowing2]

Positive TPO antibodies mean you have autoimmune thyroid disease/Hashimoto's. You could try a strictly gluten free diet to see if it helps symptoms. Dairy free also helps some but try gluten free first.

Do you have a full iron panel to include ferritin results? Your iron is below range and suggests you might be iron deficient.

Are you vegan or vegetarian?

B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...

If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.

If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good you can stop the stand alone B12 and just continue with the B complex.

amazon.co.uk/Liposomal-Soft...

The B complex will also help your folate level which needs a boost.

Raising these levels will really help your TSH rise a little as you need more Levo.

[Rowing2 in reply to Jaydee1507]

Hi here. I knew parathyroid Antibodies were autoimmune and therefore hashimotos, but I thought thyroid peroxidase was something else. X

[Jaydee1507 Administrator in reply to Rowing2]

Thyroid peroxidase antibodies with hypothyroidism mean Hashimoto's. They can also be positive in Graves disease as well.

palomahealth.com/learn/hash...

[Rowing2 in reply to Jaydee1507]

just me again. What is plasma parathyroid hormone. It’s thats that’s 8.9 ( 1.95-8.49)

[Jaydee1507 Administrator in reply to Rowing2]

I dont have experience with that test but I'm sure that doctor Google can help.

[TiggerMe Ambassador]

😏 Great news 👏👏

I've had my fT4 drop that low once on T3 and felt utterly 💩

Like JD says getting fT4 above 50% will likely make a big difference 🤗

T3 is the business but fT4 is weirdly important once on it 🤷‍♀️

[Rowing2 in reply to TiggerMe]

Hi yes that’s how I feel, but tbh this is the new norm. I read someone describe themselves as half the woman, but twice the woman and that’s exactly me. My weight gain is out if control.

[TiggerMe Ambassador in reply to Rowing2]

Must admit once I'd proven to the Endo that her idea of dosing put me back to bed and had zero effect on my TSH level, I then increased back to my happy place ( which I'd found before seeing her)... She got a bit narky and threatened to withdraw treatment unless I accepted responsibility for my low TSH ( very happy to do that) so I'm still on my happy dose 🤞

Hopefully she will learn to dose based on free's 🙏