Still no treatment. After nearly 2 years of tests and consultations

[Moviegeek7]

Previous posts:

healthunlocked.com/thyroidu....

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

healthunlocked.com/thyroidu....

Previous tests

Free T4

11.5 11.1- 22.6 8/6/23

10.7 11.1-22.6 28/12/22

9.4 11.1-22.6 23/8/22

8.9 11.1-22.6 1/2/22

9.0 12.0-22.0 3/12/21

TSH

2.39 0.27-4.20 8/6/23

2.76 28/12/22

1.97 23/8/22

3.97 1/2/22

3.06 2/12/21

Hi

Not sure where to start so I'll answer some questions from the previous posts.

I haven't managed to go gluten and dairy free as of yet but I am aiming to do it because I believe it will make a big difference to my health

After my previous vitamin D test which came back deficient I was given a very high loading dose which i took for 8 weeks. I have continued taking a vit D supplement as drops a vit D3 25 ug + K2 20ug.

I am also taking vit B6, omega 3 fish oil, zinc, soluble vit C and liquid iron with added vit C and Magnesium at night.

I was taking folic acid but then stopped as I read it can mask a vit B12 deficiency but my sister in Law says the opposite so im confused.

I had a full iron panel test done on the 8th June.

The results were:

Serum iron 14.4 5.8-34.5

Transferrin 2.69 2.00-3.60

Serum TIBC 62.7 44.0-80.0

% iron saturation 23% 14-56%

Ferritin 35 13-150

Ive had other tests done by the the endocrinologists but Im struggling getting them to give me the results 😮‍💨

I live on a island and they keep telling me the tests are wrong. So the 1st endocrinologist sent them to Cambridge and the t4 came back at 8 something but was definitely low.

But in June I went to the doctors as Id been suffering with a migraine for 10 days. So she sent me for another thyroid test which came back normal.

So when I saw the next endocrinologist he sent me for more test which he says he will send to Cambridge and said the other endocrinologist didn't send it to Cambridge. Which i am very confused about. That was 3 months ago and I don't know the results. Im seeing them tomorrow.

Because they keep saying the test are wrong I paid for private testing again as im sick of them sending me for the same test. He did request an Mri which I had done on sunday and i don't know the results.

Should I ask for an ultrasound of my thyroid?

I feel awful all the time, aching, sore tight muscles, headaches, depression tiredness and bad brain fog. Also a bunch of other issues like digestive problems. I drag myself through the day. Ive been try to get help for 2 years now and i cant even actually remember when the symtoms started as its been so long,

I am massivly concerned its not the only thing going on and im just looking for an actual diagnosise of whatever is going on so i know the actions i can take going forwards will actaully help and have an effect.

I don't know if I can change endocrinologists as i live on an island. I just feel like im gping round in circles,

Thankyou for all the help and advice you have given me in the past. I hope this all makes sense.

The new private test results are at the top.

Any advice would be really appreciated.

Thankyou

MovieGeek

[SlowDragon Administrator]

please reattach main image in a reply below as it’s not readable

[Moviegeek7 in reply to SlowDragon]

Is this any better

Test results on white paper

[SlowDragon Administrator in reply to Moviegeek7]

Yes much better

High CRP = inflammation

High inflammation can falsely raise ferritin levels

You ferritin is already far too low

Request full iron panel test for anaemia

Are you vegetarian or vegan

Pre or post menopause

High cortisol will reduce once you are on levothyroxine

Adrenals are trying to compensate for lack of thyroid hormones

Ft4 is BELOW range

Insist on starting on levothyroxine

how old are you

If under 65 years old standard starter dose levothyroxine is 50mcg……retest 6-8 weeks after each dose increase

Will take 6-12 months to increase to full replacement doses……depending on how much you weigh

Dose is typically increased in 25mcg steps

[Moviegeek7 in reply to SlowDragon]

I think they did a full panel ive put the results in the post. I think the endocrinologist did one as well but ive never seen the results. Im not vegetarian or vegan and im 40 so i could be pre menopausal. They don't want to put me on levothyroxine as my tsh isn't high and they don't think the test are right.

[SlowDragon Administrator in reply to Moviegeek7]

Your low vitamin levels are lowering TSH …..very common issue

TSH is not infallible

Improving terrible vitamin levels should help increase TSH so you can get diagnosed and treated

Your Ft4 is below range

So this should get you prescribed Levothyroxine

You could do private zoom call with private thyroid specialist?

Is your island part of U.K.?

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

[Moviegeek7 in reply to SlowDragon]

Thankyou. I think I will have to try and get a private consultation as this is getting ridiculous.

[Moviegeek7 in reply to Moviegeek7]

I was wondering if you had any advice on how to get my ferritin higher? as the iron liquid shots have done nothing.

[tattybogle in reply to Moviegeek7]

Tagging SlowDragon so she see's your question about how to raise ferritin ~ you have replied 'to yourself' so she won't have been alerted to your reply .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'm doing some shameless early morning plugging of this thyroid research petition ~ (it's asking the govt to give some of the £84Million CMA fine from the price hike of Liothyronine T3 to thyroid research) .

Please consider signing and SHARING this petition if you haven't already done so .. if you have signed already THANKYOU

healthunlocked.com/thyroidu...

Direct link to petition ~ petition.parliament.uk/peti...

"Give more funding for thyroid research and patients after price hike"

[SlowDragon Administrator in reply to Moviegeek7]

I would work on improving low vitamin D and B vitamins

Don’t start everything at once. Add one supplement then wait at least 10 days to assess before adding another

Change to vitamin D mouth spray and Increase vitamin D dose to 3000iu

Add a separate magnesium supplement in evening

And then start B12 drops before finally adding vitamin B complex

Meanwhile ferritin

Get full iron panel test …ideally via GP …if not via Medichecks

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

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

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

also consider testing selenium and zinc

Ideally test copper and zinc together…if you can find a test. Often zinc is low and copper is high

Or if you can’t afford to test

you might consider eventually adding a selenium supplement 2-3 times a week without testing

And could do same with zinc ….but Don’t supplement copper.

BEFORE booking a private consultation…suggest you Retest thyroid levels 6-8 weeks after adding vitamin B complex …..

Come back with new post once you get the results

[SlowDragon Administrator]

I have continued taking a vit D supplement as drops a vit D3 25 ug + K2 20ug.

25ug is only 1000iu

Clearly not high enough dose as can see vitamin D is now deficient again

Suggest you increase to at least 3000iu daily

Retest in another 2-3 months

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Moviegeek7 in reply to SlowDragon]

I was thinking the spray and a high dose would be better. I was surprised by the results after the large loading dose I had.

[SlowDragon Administrator in reply to Moviegeek7]

Low vitamin D is extremely common when hypothyroid

Was vitamin D retested at end of loading dose…..if it wasn’t it should have been

But 1000iu is rarely going to be high enough for anyone with thyroid disease

Personally I take 5000iu daily and this maintains vitamin D at 100-125nmol

When I was increasing vitamin D from low levels needed 7000iu daily

Magnesium supplement very important too

[Moviegeek7 in reply to SlowDragon]

No it wasn't tested and was told once loading dose was finished to take 1000iu but it clearly isn't enough. I also got told it was nothing to do with digestion as its absorbed through the skin but ive been trying to get ou in the sun every day. Im taking a good dose of Magnesium every night as im hoping its going to help with the night sweats.

[SlowDragon Administrator in reply to Moviegeek7]

A) we are rarely out in sun enough with enough skin exposed

B) if you wash within 48 hours of vitamin D being made on skin…..then it’s washed off

Thyroid patients need significantly higher dose vitamin D to maintain normal levels

[Moviegeek7 in reply to SlowDragon]

The 1st endocrinologist also told me vitamin D has nothing to do with the thyroid 😑🙄 its really hard to fight my case when they just shut me down on everything.

[SlowDragon Administrator in reply to Moviegeek7]

pubmed.ncbi.nlm.nih.gov/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

pubmed.ncbi.nlm.nih.gov/273...

Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.

pubmed.ncbi.nlm.nih.gov/300...

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

ncbi.nlm.nih.gov/pubmed/300...

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

Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.

Maintaining Vitamin D at good level reduces risk of developing autoimmune disease

bsd.biomedcentral.com/artic....

news.harvard.edu/gazette/st...

Why autoimmune patients might need higher dose vitamin D

frontiersin.org/articles/10...

[Moviegeek7 in reply to SlowDragon]

Thankyou 😊

[SlowDragon Administrator]

B12 and folate both too low

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 add a separate vitamin B Complex after a week

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...

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...

[Moviegeek7 in reply to SlowDragon]

Thankyou. The B12 result is 56.8 and folate is 8.89. The sister in law who has a diagnosis of pernicious anemia said that she thinks it lower and that i should take folate but not b12 as that will show the right result. As it better to have the injections.

[SlowDragon Administrator in reply to Moviegeek7]

That’s because she has pernicious anaemia she therefore has to have injections as she can’t absorb B12 any other way

If your B12 is only low because of being hypothyroid, not PA you will be able to improve using daily B12 supplements

If you can get your GP to test you for PA ……but with Active B12 not much below 70 you may not be able to

Have you ever had serum B12 tested via GP?

[Moviegeek7 in reply to SlowDragon]

Do you think my vitamins and iron are on the low side due to low stomach acid caused by hypothyroidism?

Test results with white background

[SlowDragon Administrator in reply to Moviegeek7]

Yes

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

But never assume you have low stomach acid

healthygut.com/4-common-bet...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

How to test your stomach acid levels

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Useful post and recipe book

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

Should I ask for an ultrasound of my thyroid?

Yes

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

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

[Beads]

It’s not your thyroid, it’s your pituitary that’s the problem. Your pituitary should see low levels of thyroid hormone in your bloodstream and respond by increasing TSH to get the thyroid to produce more t4. It’s not doing this. You need your pituitary tested. If that’s okay then they need to check your hypothalamus.

Nice guidelines cks.nice.org.uk/topics/hypo...

3rd point in 1st paragraph….Secondary hypothyroidism is a condition where TSH levels are inappropriately low or normal (or rarely raised), but FT4 is below the normal reference range.

And 3rd paragraph….Secondary hypothyroidism is caused by a pituitary or hypothalamic disorder.

The phrasing you need to use is along the lines of… okay, my results are wrong, but they’ve been checked by however many different labs, as my thyroid hormones continue to come back low and I have these symptoms which indicate an underactive thyroid, I want to trial replacement thyroid hormone therapy to see if it improves my quality of life. And then we can investigate why my pituitary is not responding to the low level of thyroid hormone when I’m feeling better. Let’s treat the symptoms (the low thyroid) to get me feeling well, and then figure out the cause.

Or words to that effect.

Though hopefully the mri may show atrophy of the pituitary or something, and the below range t4 has been confirmed by Cambridge. Good luck with your appointment today.