New blood test results

[Justine_Case]

Hi I have untreated hypothyroidism/hashimoto's, I was diagnosed about a year ago, but had symptoms - particularly 'hyper' ones for many years prior.

I have been tested for Celiac and was negative, however since being on this forum, I have discovered the painful rash on my scalp that was attributed to shingles by various Doctors (I had this for years) could well be due to Dermetitis Herpetiformis.

So I am now gluten free, and my scalp is fine, also the joint pain I experienced for years has gone, but both come back when I consumed gluten again in preparation for my Celiac blood test.

I have just finished a telephone appointment with my GP.

He says I still shouldn't start Levothyroxine yet, until my TSH has a value of around 10 (and T4 also 10).

I explained my symptoms are numerous - tingling/hair loss/fatigue/cold/weakness/tinnitus/puffy eyes and many more.

I did say about my antibodies being high - so I have autoimmune thyroiditis, but he didn't answer.

Regarding vitamins, I have been taking vitamin D 2000 a day since August/September, and a D3 with K2 spray twice a week.

B12 I have stopped due to it being high on my last couple of tests (I thought I might have pernicious anaemia due to other family members having it, but a GP blood test ruled that out).

I did buy some Thorne B Complex supplements, but am not using them due to their containing B12.

I have been taking Ferrous Fumurate for months, due to my low Ferritin levels (not GP advised).

Also I increased the 'iron rich' foods in my diet.

When I told my GP this earlier, he just said my Ferritin levels are fine. So I'm not sure what to do there?

One good thing, I am finally being referred for a gastroscopy, due to 2 GPs thinking I may have gastritis.

Could you please look at my new Thriva blood test results, any feedback is appreciated.

HAEMATINICS

Iron 19.6 10 - 30 umol/L

UIBC 43.7 24.2 - 70.1 umol/L

TIBC 63 41 - 77 umol/L

Ferritin 66 13 - 150 ug/L

Transferrin Saturation 31 20 - 55 %

Active B12 >150 37.5 - 188 pmol/L

Please note change of reference range 23 Oct 2022

Folate (serum) ** 39.9 8.83 - 60.8 nmol/L

25 OH Vitamin D L 73 75 - 175 nmol/L

Total 25(OH) vitamin D < 25 nmol/L is deficient.

Please note change of reference range 23 Oct 2022

THYROID FUNCTION TESTS

Thyroid Stim. Hormone H 5.47 0.270 - 4.2 mIU/L

Free T3 5.0 3.1 - 6.8 pmol/L

Free Thyroxine (FT4) 14.2 12 - 22 pmol/L

Total Thyroxine (T4) 90.0 59 - 154 nmol/L

Thyroglobulin Antibodies 55.5 0 - 115 kIU/L Method: Roche Cobas

Thyroid Peroxidase Antibodies H 186.2 0 - 34 kIU/L

[StitchFairy]

I think you should ask GP to justify why you have to wait until TSH is 10. You have TSH over range, bottom of range FT4 and positive antibodies so obviously autoimmune caused hypothyroidism. I'm pretty sure NICE guidelines don't say wait for TSH and FT4 to get to ten. That's out of date nonsence which will benefit nobody, least of all you.

[Justine_Case in reply to StitchFairy]

Hi thank you for replying

I don't understand why they are so reluctant to start me on Thyroxine, I have argued my case, but it hasn't helped.

The GP did say I am due their TSH blood test in February, so we will look again. To be honest I'm not sure what more I can say to them.

I explained my symptoms

I said my cholesterol is high - possibly not helped by my hypothyroidism, and all he said was he would increase my statins prescription (I'm barely taking them, but I didn't tell him that).

ditto blood pressure

I pointed out my high antibodies - which he didn't respond to.

It is so frustrating.

Just feel rubbish.

[SlowDragon Administrator]

Your GP is incorrect/out of date

You have high thyroid antibodies, confirmed gluten intolerance, hypothyroid symptoms and TSH over 5

see here

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Is this your first TSH result over 5?

Technically you need a second test with TSH over 5 - 6-8 weeks later

You should be started on levothyroxine

Standard starter dose of levothyroxine is 50mcg and dose is increased slowly upwards in 25mcg steps over coming months until TSH is around or under one and Ft4 and Ft3 at least 50% through range

Meanwhile increasing vitamin D dose

Are you currently taking any magnesium too

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

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...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

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...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

[Justine_Case in reply to SlowDragon]

Hi This is my first TSH level over 5, I think the last one was a little over 4.

Thank you for the links, I will look at them later.

Is there a particular magnesium supplement recommended?

I'm happy to take one to see if it helps.

I will further concentrate on improving my vitamin D levels.

Advice appreciated!

[SlowDragon Administrator in reply to Justine_Case]

Ferritin better nearer 100

Retest full iron panel test every 4-5 months

It’s possible to have high iron and low ferritin

Medichecks iron panel test 

medichecks.com/products/iro...

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...

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...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Increase iron rich foods in your diet

Request coeliac blood test blood test now if not tested yet

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

[SlowDragon Administrator]

I said my cholesterol is high - possibly not helped by my hypothyroidism, and all he said was he would increase my statins

Hypothyroid patients should NOT be prescribed statins

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

[Partner20 in reply to SlowDragon]

I am sorry to bring this to your attention but once again you erroneously misinterpret the NHS advice on statins and hypothyroidism. There are many who need statins who nust not be put off by this misleading statement of yours. From personal experience I am in fact opting to take statins as my cholesterol levels are deteriorating despite near-optimal thyroid levels. In fact the more my thyroid levels improved, the worse my cholesterol levels became. Let's hope that no-one else whose conditions require statins is put off by your constant misquoting. People who purport to be knowledgeable and who give advice to others should at least make sure this advice is accurate. Words are everything.

[SlowDragon Administrator in reply to Partner20]

If you click on the link you will see ….This is taken from NHS website

If Ft3 is low, thyroid levels are not optimal

And vitamin D, folate, ferritin and B12 need to be maintained at GOOD levels

[tattybogle in reply to Partner20]

Words are everything ... yes .

slow dragon didn't write "patients with hypothyroidism should not be prescribed statins".. she wrote "hypothyroid patients should not..."

in your case your hypothyroidism has been treated .. therefore you are no longer hypothyroid ... and in that case it may be necessary to try statins, since rectifying the hypothyroidism has not resolved your cholesterol issue .

But in patients who are hypothyroid, the NHS accept that the hypothyroidism should be addressed first.

In this instance, the OP has untreated hypothyroidism . and so to prescribe increasing doses of statins rather than first treat the hypothyroidism seems daft .... and not in line with current NHS guidance for the treatment of sub clinical hypothyroidism ( which states that if there are TPOab and TSH over range twice , and symptoms ,then Levo may be considered . So repeating TSH in 3 months with a view to staring levo to see if that improved cholesterol would surely be more appropriate here than prescribing (more) statins... especially to a patient who has said in an earlier reply below that she was already feeling muscle pain when taking them.

[SlowDragon Administrator]

If you suffer from constipation Calm vitality magnesium powder is cheap and easy to use. Best start on low dose and increase until get desired effect. Too much can cause diarrhoea

All magnesium best afternoon or evening

Alternatively Thorne magnesium- mix of malate and citrate doesn’t affect bowels. Capsules. Can tip out into cup of water

[Justine_Case in reply to SlowDragon]

Thank you SlowDragon I will order some of that Thorne magnesium.

As for the statins, I had already established they caused me awful muscle pain when on them.

GP said the statins weren't responsible sigh...

So I wasn't happy at taking them at before, so am even more reluctant now I know they aren't recommended for people with an underactive thyroid.

[Lovecake]

I wish my GP had started me on thyroxine when my TSH was 5.

He didn’t even tell me, and back then we didn’t have patient access and I didn’t know to ask.

By the time my TSH was 10, my FT4 was u dear range and I felt dreadful. I had been feeling awful for over 3 years but was ignored.

I also know now that many of my debilitating migraines probably wouldn’t have happened if I had better thyroid levels.

I hope you are able to follow the great advice/links here and speak to another GP maybe about getting some thyroxine.

I haven’t read all the replies, but if you get the next blood test done before 9am on an empty stomach with having just water it is likely that your TSH will be higher and FT4/FT3 lower.

My TSH of 10 was from a blood test taken at 2.30pm after a cup of tea, breakfast, and lunch - just to give me the energy to get there.