first bloods back after 8 weeks - still lacking... - Thyroid UK

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first bloods back after 8 weeks - still lacking energy

ChrisW2609 profile image
9 Replies

Hi again

Really confused today.

I have received my bloods back for TSH levels which is now in normal range (3.7) compared to 13.4 when I went only 25mcg

I mentioned to the GP how tired I feel again and my mood is certainly not where I would like it. I requested increase in dosage having read typical starting dose is 50mcg.

They flatly refused given my reading was normal as they don’t want it to go the other way.

I recently also had private bloods which came back as iron levels at 3.5 which is also on the low range. I was told it’s not anemia and to take a supplement.

has any males gone through similar and can offer any advice?

I am happy to explore anything to get this sorted

thank you

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9 Replies
PurpleNails profile image
PurpleNailsAdministrator

Was FT4 & FT3 tested.? TSH alone is inadequate test. & most feel better with TSH in lower part of reference range.

This doctor doesn’t seem aware of this, or that as below starting dose is unlikely to be sufficient.

There’s lots of room to increase before TSH goes anywhere near low in range, (not the TSH should be the focus) why are they prepared to keep you unwell?

Presumably if TSH is ok & it’s not your thyroid they are doing further investigating to find out why you are unwell?

See another doctor.

ChrisW2609 profile image
ChrisW2609 in reply to PurpleNails

Hi - thanks for your reply

Only TSH read.

I tried to push back but was told it can take 6 months.

I’ve attached a pic of my brand of tablets.

I have also today reached out to my private health provider to get a referral to Endo consultant as I just think they are box ticking.

Brand of tablets
Sparklingsunshine profile image
Sparklingsunshine in reply to ChrisW2609

Hi

Is there a reason you were started on just 25mcg? Like cardiac problems? Your TSH was higher than mine was at diagnosis, and I was put on 50mcg straight away. It's very unlikely to be enough for you to feel well, especially as you are male. Very often its around 1.6mcg per kilo of bodyweight for a very rough approximation of required dosage.

ChrisW2609 profile image
ChrisW2609 in reply to Sparklingsunshine

No explanation around dosage I think it was just to kick me off. Not heard the 1.6 mcg bit before, I don’t have any issues aside from eczema so I’ll raise this with the consultant.

Any recommendations on consultants pleaSe?

Sparklingsunshine profile image
Sparklingsunshine in reply to ChrisW2609

Hi

Sorry I've never seen one but I believe ThyroidUK who run this forum have a list of private GP's and Endocrinologists. You can email them asking for the list.

PurpleNails profile image
PurpleNailsAdministrator in reply to ChrisW2609

I think I’d be arranging my own complete test privately with FT4, FT3 & nutrients. Then finding a reasonable GP to look at increasing doses in 25mcg increments & testing after 6 weeks until FT4 & FT3 at adequate levels.

Dose adjustment are usually settled by 6-8 weeks, to suggest takes 6 months is incorrect.

Once you have information of full test & you can find sensible GP then look to take to private endo.

Does the brand suit you? Best to stick with single brand not take a mix. Some find certain brand causes reactions.

SlowDragon profile image
SlowDragonAdministrator

Run away from this GP as fast as possible

Get FULL thyroid and vitamin testing done yourself now

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

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 (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

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

Is this how you did your test?

Low iron or ferritin

Can you give range on this iron test result

Are you vegetarian or vegan?

Likely EXTREMELY under medicated for thyroid…..low vitamin levels tend to lower TSH

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

come back with new post once you get results

Only do private testing early Monday or Tuesday morning. Be aware of possible postal strikes affecting delivery of kit back to lab

Assuming tests show under medicated (virtually guaranteed to do so) take results to different GP and insist on next 25mcg dose increase in levothyroxine

Low iron

Likely to need full iron panel test for anaemia too

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

ChrisW2609 profile image
ChrisW2609 in reply to SlowDragon

Thank you for both posts SlowDragon it’s very helpful & much appreciated

SlowDragon profile image
SlowDragonAdministrator

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

See also this pinned post on where TSH should be on levothyroxine……dose is increased slowly upwards in 25mcg steps until symptoms are improved…..frequently TSH will be under 1

Most important results are ALWAYS Ft3 followed by Ft4 and all four vitamins must be optimal

healthunlocked.com/thyroidu...

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