secondary hypo and doctor questioning diagnosis

[strawberrysorbet]

Hello everyone, I moved to a new GP in the last few years (house move). When I moved, my doctor just continued prescribing levothyroxine because it was on my records and although he wasn't testing T3 he did look at T4 and seemed to listen to me when I explained the levels I needed to be at, in order to feel well. However, in the last year the surgery has stopped testing T4 and will only test TSH. I have explained that I have secondary hypothyrodism and that reviewing TSH alone will not actually show if I'm correctly medicated but I seem to have opened a can of worms, as the doctor is now questioning my original diagnosis. He says he spoke to another department who questioned "why I even needed all these tests" and that apparently my original endocrinologist "no longer works for the NHS" and I'm not sure what he's inferring with this, as surely it doesn't matter if a doctor has now retired, I still had a diagnosis 10 years ago.

My original diagnosis was due to TSH normal range, T4 below reference range. I got a second opinion privately as the GP wouldn't follow nice guidelines and look at secondary hypo. I second blood test showed the same results so I was referred to an endo who works both privately and on the NHS. He conducted a TRH test and found a blunted response and diagnosed secondary hypothyrodism and I've been on levo ever since.

I am now feeling very concerned that my medication is going to be removed or I will have to go through all these tests again - but obviously my levels are no longer below range, as I have been medicated for years. Can they overturn a diagnosis?

Extra complication is that since moving surgeries apparently my notes have been lost, but I have forwarded my new doctor all the old letters from the time... he's still questioning why I needed the tests.

Any advice ?

[TiggerMe Ambassador]

Are you on the correct dose at the moment do you think?

If yes then absolutely refuse to reduce if they refuse to test correctly, then if they keep on (my lot tend to back down if you are firm) say you would need to be referred to an Endo (check the Thyroid UK list so you have a name in mind)

Like many of us it means stumping up for private testing but it's easier than trying to get the right tests out of them regularly enough 😕

[strawberrysorbet in reply to TiggerMe]

I think I might need to increase my dose, only that I complained last year about memory problems and hadn't realised they hadn't been testing T4, it's only since he's said all this that I looked back on my records and can see they were soley relying on the TSH.

I really don't want to have to go through another TRH test if I can avoid it. I'm awful with cannulas and I fainted last time. It just seems unfair to have to go through a re-diagnosis process just because my new doctor can't believe I was diagnosed before - even if I have all the blood results and letters from the endo...

They also wont accept private blood tests. I offered to just privately test and they got quite angry with me.

[TiggerMe Ambassador in reply to strawberrysorbet]

I was thinking the private testing for your records... are all your vits and mins optimal?

If it's just a small increase I find by getting my prescription filled asap I have enough wiggle room to tweak my dosing without the drama of discussing it with them... I often tell people to request an early prescription due to holiday or lost tablets to give a buffer 🙃 I am prescribed 700mcg per week but actually 800mcg works best for me!

I would think if they try to refer you the Endo will just bounce it back and tell them to keep prescribing as is, they really don't want unnecessary extra patients

[strawberrysorbet in reply to TiggerMe]

thank you!! I hope you are right... I'm probably worrying for nothing!

[TiggerMe Ambassador in reply to strawberrysorbet]

Just be firm with them 🤗 and agree to nothing spur of the moment give yourself time to research

[Charlie-Farley in reply to strawberrysorbet]

But won’t do their own. They are so ignorant. I think there is a drive to just get people off thyroid medication- probably because of the medical exemption certificate.

There is an extremely active post running at present you should probably take a look at. Please don’t humour them in the hopes they will see how ill you are and realise their mistake. Symptoms seem to be viewed as histrionics in some quarters. Blooming ignoramuses, it would not be happening if it were a predominantly male disease. I think those poor chaps on here who suffer the same fate would agree. 😱

[gabkad in reply to strawberrysorbet]

If it was done in a hospital (most likely), you ought to be able to get the records. I had the same sort of horrible test done in 1986 and was able to get the test results in 2000+. Medical records ought to have them.

[SlowDragon Administrator]

Test privately yourself

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)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes 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

or

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[Charlie-Farley]

healthunlocked.com/thyroidu...

Forewarned is forearmed!

[strawberrysorbet in reply to Charlie-Farley]

thank you, that's shocking... but I suspect you might be right and this is what they are really up to!

[Charlie-Farley in reply to strawberrysorbet]

Hi Strawberry 🤗

Keep meticulous records and start looking for good research papers to back you up. Isn’t it awful we have expend so much time and energy making up for their deficiencies. 🙄

I have made self advocacy posts that I may have to revise and repost. However the original posts sit in my profile.

[Calceolaria]

Why on earth would a GP feel it was ok to ‘get angry’ with you? What sort of medic/sort of scientist cannot tolerate a challenge? I think we all know the answer to that!

[Musicmonkey]

Hi,

The guidance which your Dr is following will be one of these:

Clinical guidance:

NICE: nice.org.uk/guidance/ng145

Policy guidance:

NHS England nhs.uk/conditions/underacti....

BUT both of these cover diagnosis and treatment of Primary hypothyroidism. Therefore they do apply to you. The blood test results once on treatment are unhelpful for patients with Secondary hypothyroidism, especially the TSH which will have been low/normal in diagnosis as in your case. Drs should go by symptoms.

Find out all you can about Secondary hypothyroidism diagnosis and treatment and argue your case for continued Levothyroxine. The NHS says it works with you taking into account your preferences. I know this isn't happening, but it's meant to be what we can expect.

At the very least it should be following its own guidance...