NHS Endo refused to see me as I'm "unequivocall... - Thyroid UK

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NHS Endo refused to see me as I'm "unequivocally normal"

dizzyarmadillo profile image
13 Replies

As in title, mild vent.... Doctor (well Advanced Nurse Practitioner.....) referred me to local hospital as my last TSH was 2.75 (I'm taking 25mg levothyroxine. Bloods done as per forum rules) and I'm still experiencing some horrendous symptoms. Above was the response from the endocrinology department as they cancelled my appointment....

How can you tell someone that they're "unequivocally normal" when they haven't even seen me, haven't requested a repeat bloods to check that my levels are still the same and that wasn't just a fluke and the NHS lab won't test my T3 or T4 because I'm "in range" 🙄

I still have an in progress referral to a different hospital (I requested it as I didn't like the look of the local hospital's endocrinology team), so now I've just got to hope that that one doesn't get cancelled too 🙄

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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

Why doesn't your ANP just increase your dose of Levo. 25mcg is just a starter dose and should be titrated until your symptoms are alleviated and most hypo patients are best when TSH is 1 or below .

Check out this pinned post about TSH

healthunlocked.com/thyroidu....

dizzyarmadillo profile image
dizzyarmadillo in reply toSeasideSusie

I've tried getting him to increase it, but he essentially said he was not going to and that referring me was a compromise. He's the third member of the practice that I've dealt with - the others all brushed me off fairly early and refused to entertain the thought that I was symptomatic at such a low level. Hence why I'm now dealing with the ANP, as he's at least been vaguely helpful...

I still have a pending referral to a different hospital, so hopefully that one will go through 🤷🏻‍♀️

shaws profile image
shawsAdministrator in reply todizzyarmadillo

I was very surprised by the knowledge of some GPS who didn't seem to have any clue about the function of the thyroid gland.

Mine told me that I had 'no problems' despite my TSH being 100.

If you want to read my background click on my name and it will take you to my 'pqge'.

SlowDragon profile image
SlowDragonAdministrator

standard STARTER dose levothyroxine is 50mcg and dose levothyroxine should be increased slowly upwards in 25mcg steps until symptoms are resolved

Typically eventual dose levothyroxine will be approximately 1.6mcg levothyroxine per kilo of your weight per day

See different GP and get dose increase in levothyroxine to 50mcg

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here 

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

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.

You will need to push for next dose increase

dizzyarmadillo profile image
dizzyarmadillo in reply toSlowDragon

I've tried getting him to increase it, but he essentially said he was not going to and that referring me was a compromise. He's the third member of the practice that I've dealt with - the others all brushed me off fairly early and refused to entertain the thought that I was symptomatic at such a low level. Hence why I'm now dealing with the ANP, as he's at least been vaguely helpful...

I still have a pending referral to a different hospital, so hopefully that one will go through 🤷🏻‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply todizzyarmadillo

Insist GP treat your anaemia and vitamin D insufficiency

Low vitamin levels are DIRECTLY linked to being left under medicated

Email GP or Print out all official guidelines and your recent Medichecks test results and request

A) increase in levothyroxine as your TSH is now 4.33 and over range

B) prescription for 1600iu vitamin D daily for 6 months, as per guidelines

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

C) coeliac blood test as per guidelines if not done yet

Charlie-Farley profile image
Charlie-Farley in reply todizzyarmadillo

dizzy you need to carefully read all the info above that SlowDragon has provided - they are not following guidelines and are frankly incompetent.

I was left on 25 µg of levothyroxine for six months and it made me incredibly ill. Had it not been for this forum I would not be here now and that is no exaggeration.

I have written my bio as a case study of just these sorts of circumstances and I would strongly advise you to read that to understand how important the information is. If you click on my face, it will take you to my profile and that is where my bio resides.

It is such an unsatisfactory situation, but we have to self advocate and push back at this absolute ignorance.

TSH on every single principle is the most unreliable measure of thyroid health. TSH is thyroid stimulating hormone. It is not even made in the thyroid. This is what we would call an indirect measurement why do they use an indirect measurement when they could actually sample the thyroid hormones? I don’t think any medic would be able to logically tell you.

SlowDragon profile image
SlowDragonAdministrator

Vitamin levels

Have you had vitamin D tested

9/1/23

Serum ferritin: 11.0 ug/L (range 11.0 - 307.0)

Serum B12: 251 ug/L (range 145-914)

Serum folate: 2.64 ug/L (range 3.0-20.0)

Clearly these are all terrible

what vitamin supplements are you now taking?

Are you vegetarian or vegan

Read the many posts and replies by SeasideSusie and humanbean on importance of GOOD iron and ferritin

Ferritin at least over 70 minimum

serum B12 over 500

Folate at least over 15

dizzyarmadillo profile image
dizzyarmadillo in reply toSlowDragon

Yes they were rather terrible (though GP seemed fine with my ferritin being on the base of the scale 🙄) - I'm planning to retest those next month. I have been taking Thorne Basic B, plus B12 liquid drops and a vit d/vit k mouth spray. I'm not vegetarian or vegan, though I did cut out dairy just before Christmas. I've been trying to eat pate a couple of times a week, so fingers crossed that will do the trick for my iron.

SlowDragon profile image
SlowDragonAdministrator in reply todizzyarmadillo

It takes many months (and optimal thyroid levels) for low ferritin to improve

Red meat every day, orange juice to improve iron absorption etc etc

SlowDragon profile image
SlowDragonAdministrator

Vitamin D result 32nmol

healthunlocked.com/thyroidu...

How much vitamin D are you now taking

dizzyarmadillo profile image
dizzyarmadillo in reply toSlowDragon

About 7000 IU a day

SlowDragon profile image
SlowDragonAdministrator in reply todizzyarmadillo

So retest thyroid and vitamins again in another 6-8 weeks from last test ….or if you get dose increase in levothyroxine…..6-8 weeks after that

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