Any help? My doctors are useless

[Soxakita]

Had a blood test done two days ago and my hematocrit is 55% my hematocrit of 44% is classed as high my haemoglobin is 168 and the optimal range is 155 (high end)alongside my liver and calcium levels and my ferritin has dropped again to 26. My TSH was 2.90 optimal range of 0.25-4.90. My white blood cells are also raised but my doctors have just marked my blood results as borderline no further action. I'm still awaiting a few blood results (hba1c) as I am constantly hungry and craving sugar and carbohydrates waking up through the night to stuff my face and I'm losing a lot of weight. I don't know what to do, my doctors just don't care.Edit the doctor only tested my TSH and the blood test was taken at 3 pm

[SlowDragon Administrator]

Looking at previous posts

You have Hashimoto’s

Are you on levothyroxine yet

If yes, how much and how long on this dose

Edit the doctor only tested my TSH and the blood test was taken at 3 pm

ALWAYS Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Have you had coeliac blood test yet

You need vitamin D, folate, B12 and ferritin tested

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Soxakita in reply to SlowDragon]

No, I'm not medicated yet even though I'm symptomatic. My TSH keeps fluctuating between hyper and hypo and then back to normal. NHS won't medicate till my TSH reaches 10. I've had my coeliac test which came back normal but my doctor has just ordered another test as I have severe diarrhoea, bloating and 22 pounds of weight loss since October. I think my doctor has ordered a few other vitamins but the results haven't come back yet. My last b12 was on the low end of normal at 390 and the optimal level of 180-2000 folate was 2 and the optimal level is 1.5 to 20.

[Soxakita in reply to Soxakita]

Doctors have also ordered calprotectin for IBD which hasn't come back yet.

The doctor I have seen has ordered all the right tests but then just put the results as borderline no further action

[SlowDragon Administrator in reply to Soxakita]

NHS won't medicate till my TSH reaches 10

That’s incorrect, two separate tests with TSH over 5, and thyroid symptoms and high thyroid antibodies…..you should be started on levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

The transient hyperthyroid phases are when thyroid cells break down and release excess hormones. After each of these your thyroid becomes more permanently damaged

[Soxakita in reply to SlowDragon]

I will have to ask my doctor as my last doctor's surgery said they wouldn't medicate until my TSH was 10. I have had multiple levels over 5 but not two consecutive tests

[SlowDragon Administrator in reply to Soxakita]

as my last doctor's surgery said they wouldn't medicate until my TSH was 10.

Which is incorrect

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[SlowDragon Administrator in reply to Soxakita]

doctor has just ordered another test as I have severe diarrhoea, bloating and 22 pounds of weight loss since October.

Majority of Hashimoto’s patients gain weight, but significant minority struggle to maintain weight, due to gut issues and/or lack of appetite

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

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

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

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

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Soxakita]

My last b12 was on the low end of normal at 390 and the optimal level of 180-2000 folate was 2 and the optimal level is 1.5 to 20.

So these need improvement

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

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

Highly effective 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

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

Post discussing different B complex

healthunlocked.com/thyroidu...

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...

[SlowDragon Administrator]

low vitamin levels are results of low thyroid hormone levels

Low vitamin levels tend to low TSH making it harder to get diagnosed and started on levothyroxine

you need to test vitamin D and ferritin levels too

Request GP do full iron panel test for anaemia including ferritin

Aiming for ferritin at least over 70

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

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Vitamin D at least over 80nmol

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

[Soxakita in reply to SlowDragon]

My ferritin is 26 and they have flagged it as satisfactory no further action but my red blood cells are all elevated, hematocrit, haemoglobin, and red blood count and my platelets are low so I have sufficient red blood cells but borderline ferritin. My albumin is high which could be to do with my diarrhea and my calcium is also elevated

[SlowDragon Administrator in reply to Soxakita]

So your ferritin is deficient

I should print out NICE guidelines and give them a copy

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

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

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...

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...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

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...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40 30 to 180

Females 40 ≤ age < 50 30 to 207

Females 50 ≤ age < 60 30 to 264

Females Age ≥ 60 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.