New to forum - Advice on my test results and diagnosis would be greatly appreciated plus next steps

[Kayakingkim]

After feeling unwell for a number of years I finally went private for full screening and diagnosis as GP would only test TSH even though I had classic hypothyroid symptoms. Other health conditions- I have mild kidney failure, hypertension and slightly elevated haematocrit.

I initially went to medichecks and had a basic thyroid test in April of last year

TSH 1.65mU/L (0.27-4.2)

Free T3 4.15 pmol/L ( 3.1-6.8)

Free T4 13.1pmol/L (12-22)

I went back to the GP and they dismissed my concerns that free T4 was low but agreed to complete another test. Despite assuring me a full screen would be done only TSH completed 0.936miu/L (0.35-4.94)

At the time I was struggling with severe labile hypertension which the GP was unable to rectify with medication.

I have a strong family history of thyroid disease and decided to seek help from a private endo. I found a brilliant endo via thyroid U.K. list and visited them in June 2022.

my test results were:-

TSH 1.94 min/L (0.27-4.2)

Free T3 4.8 pmol/L (3.1-6.8)

Free T 4 12 pmol (12-22)

Thyroglobulin antibodies 24.8 iu/mL (0-115)

Thyroid Peroxidase <9iu/mL (0-34)

Vit D 36nmol (50-100)

B12 82pmol/L (25.1-165)

Red cell folate 728nmol (340-1474.7)

Ferritin 10 ug/L (10-204)

My endo diagnosed suspected secondary hypothyroidism and stated me on 50mcg levothyroxine. Six weeks later he increased it to 75.

I was reviewed in September 2022

TSH 0.03mu/L (0.27-4.2)

Free T3 5.2pmol/L (3.1-6.8)

Free T4 19.9pmol/L (12-22)

I was feeling great my blood pressure had stabilised and I no longer need to take daily hypertension meds only one tablet once a week!

My endo tweaked the Levo to 75 mon-fri and 50 sat/sun.

Latest tests show -

TSH 0.04mu/L (0.27-4.2)

FreeT3 4.77pmol/L (3.1-6.8)

Free T4 19.6 pmol/L (12-22)

CRP HS 0.73mg/L (0-5)

Ferritin 46.7ug/L (13-150)

Vit D 70nmol/L (50-200)

Vit B12 127pmol/L (37.5-150)

Folate 3.34 >3.89ug/L

Antibodies fine.

During the time I have seen the endo he has written to my GP on numerous occasions asking him to continue prescribing my levothyroxine but my gp has refused. My endo has said I definitely have secondary hypothyroidism but my GP says no I don’t and that I am being over medicated placing me at risk of AF and Osteoporosis. My blood pressure has continued to improve and I now only have to take medication once every ten days.

My GP did refer me to the local endocrinologist who refused to accept referral as thyroid normal- he specialises in diabetes. I was also referred to a pituitary endo in a hospital in the next county who again refused to see me saying my surprised TSH shows I don’t have a pituitary disorder. This and getting all the gp’s onside in the surgery has entrenched my GP’s position.

I have just had Basal pituitary tests complete via GP although NHS lab refused to do LH or IgF1 . FSH, prolactin, am cortisol all in normal range.

FSH 86iu/L (26.7-133.4)

Prolactin 219 min (109.557)

9am Cortisol 496

Ferritin 36.7 (10-204)

GP now saying he was right all along and endo is an ‘outlier’ and out of step with normal clinical practice. This completely ignores how much better I feel with my symptoms reduced dramatically. He is advising me to instantly cease all thyroid medication and offering to treat my individual symptoms. I reminded him he tried that for two years without success.

Please could you advise on next steps:-

Do the pituitary tests rule out secondary hypothyroidism?

How do I get my GP to accept private endo recommendations ?

Is there a campaign group I can join to lobby NIcE to change current guidelines on Secondary/Central hypothyroidism ?

Look forward to hearing from you this is such a helpful/ informative site 😊

[Jaydee1507 Administrator]

Welcome to the group.

This is a tricky one as it seems your NHS GP is not accepting the diagnosis. I found this link on the internet describing when a GP should and should not take over a private precription which might explain the discrepancy and their refusal to prescribe on the NHS.

gps.northcentrallondon.icb....

I believe it can be hard to get a diagnosis of secondary hypothyroidism. When getting diagnosed things always go much more smoothly if you can get that diagnosis on the NHS, as in years to come they will always question the diagnolsis and try and force you to stop taking Levo as a trial to see if you can go without it.

I'm assuming your private Endo doesn't also work within the NHS. Can you find one that works both privately and in the NHS near you? Thyroid UK have a list of Endocrinologists if you email them.

Otherwise you really are a bit stuck getting treatment privately forever.

About your low vitamin levels. Are you tackling these by taking supplements? key vitamin levels need to be at OPTIMAL for our thyroid hormone to work properly.

What time of day were your blood tests done? 9am is recommended for highest TSH.

[Kayakingkim in reply to Jaydee1507]

thanks for your response. My endo is now private only based in London having worked in NHS for years. I will look at the thyroid U.K. list again to see if I can find someone who does both . Started supplements 9 months ago on recommendation of endo taking 3000 Vit D also taking ferrous sulphate max daily does and Vit B12. Just started taking folic acid but can’t tolerate it as upsets my stomach. Tests are done at 10am as earliest appointment I can get for medichecks blood taken at local private hospital I stop Levo 24hrs before and only drink water prior to test.

I live in Cornwall and haven’t found one yet that specialises in secondary hypothyroidism- any suggestions gratefully received. Prepared to travel to Devon too. Please reply via DM if recommending

[Jaydee1507 Administrator in reply to Kayakingkim]

For B12 & folate we recommend a good B complex which keeps all the B's in balance. This one is a good one and has methylfolate which might suit you better.

amazon.co.uk/Yipmai-Liposom...

[Kayakingkim in reply to Jaydee1507]

Brilliant ! thanks for your help

[SlowDragon Administrator]

Can you not change GP practice

Ferritin was severely deficient at 10

Keep working on improving ferritin levels

Aiming for ferritin at least over 70 minimum and around 100 better

Have you had ultrasound scan of thyroid

Difficult for GP to deny if it shows anything significant

[Kayakingkim in reply to SlowDragon]

Thanks for your reply. No I haven’t been offered a thyroid scan I will request one though good idea. I seem to really struggle to increase ferritin even with max dose ferrous sulphate. It has now dipped again from 46 to 34 .

I changed to my current practice from another one that covers my area as they were terrible could never get an appointment etc. not sure if I can go to an out of normal area gp but will look into it. Worried that gp has written all over my notes and others may close ranks

[SlowDragon Administrator in reply to Kayakingkim]

Just as important is increasing iron rich foods in your diet

Also always worth trying strictly gluten free diet

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.

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...

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...

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...

There’s lots of different iron supplements

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements 

healthunlocked.com/thyroidu...

[Kayakingkim in reply to SlowDragon]

loads of useful links for me to follow up thank you so much

[eeng]

Ferrous sulphate is about the least well absorbed form of iron. Most people find ferrous fumarate is better, and more recently iron bisglycinate has become available. Some people prefer that. Hope you find one that suits you better.

[Kayakingkim in reply to eeng]

Thanks for the suggestion really helpful will look into this alternative

[tattybogle]

Hi Kayakingkim.

There was some very useful information on getting central hypo acknowledged and treated ,from a member called UKmale_hypo (and a link to a copy of an excellent letter he wrote to the head of endocrinology dept , which brought the required treatment ) in his replies to another post:

healthunlocked.com/thyroidu....

his replies start about half way down ,( it's a very long post ) and the link to the letter he wrote is near the end . ( it starts " Can you see this ? .. Dropbox/ .." )

[Kayakingkim]

thanks tattybogle found it great letter !