How to get a referral to an endo for central hypothyroidism?

[Zazbag]

I have a friend who has struggled with classic symptoms of hypothyroidism (depression, fatigue etc) for many years now.

Her TSH has remained completely normal at around 1.5, so hypothyroidism was never suspected until I got involved and got her to ask for her T4 to be tested, which came back right at the bottom of the range (still within range but only just).

The fact she has an "ideal" TSH level but rock bottom T4 and all the symptoms of hypothyroidism indicates central hypothyroidism, but her GP is refusing to acknowledge this as a possibility.

I even wrote a letter to her GP with sources from the medical literature and NICE guidelines to explain the significance of her test results, and pointing out that the next step should be an urgent referral to an endocrinologist, however instead the GP ordered a cascade of other blood tests for conditions like RA, lupus, scleroderma, Sjögren's syndrome and polymyositis which all came back negative.

I asked her to have her B12, folate, vitamin D and ferritin tested at some point too and they were all absolutely dire (another sign of hypothyroidism) so she's since been supplementing them all and has reported feeling much greater mental clarity but still quite a lot of physical fatigue.

She also has some symptoms that indicate B12 deficiency like difficulty walking and her MCV was at the top of the range indicating her red blood cells were too large (a sign of hypothyroidism, B12 deficiency and folate deficiency). I asked her to get tested for pernicious anaemia, the result of which initially came back as borderline so she had to be tested again and then it came back negative so PA has been ruled out.

At this point she's also been tested for MS as well as the above diseases which have all been ruled out, and yet they're refusing to explore the thyroid possibility. She's never been tested for Hashimoto's.

What can we do to get her GP to refer her to an endo? To me it's incredibly obvious she has central hypothyroidism, and she has the blood test results already that qualify her to be diagnosed for it and they so far they will not budge. They're now saying she has CFS which is just a cop-out.

Thanks in advance!

[SeasideSusie Remembering]

What can we do to get her GP to refer her to an endo?

It would seem that her current GP wont budge on this despite being shown evidence, so the only suggestion would be to see a different GP or go private.

As central hypothyroidism is not as common as primary hypothyroidism and many GPs and endos are unaware of it, it makes sense to seek out a doctor who is familiar with central hypothyroidism before committing to any consultation. You can ask on here if anyone has any recommendations or experience of one and if so to please send you information in a private message (we can't give doctor recommendations on the forum).

[SlowDragon Ambassador]

She should get FULL thyroid testing herself including BOTH TPO and TG antibodies

Ideally also retest vitamin levels

Important to maintain vitamins at optimal levels

Recommended that all thyroid blood tests early morning, ideally just before 9am and don’t eat before test …..just water

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

see discussion here

healthunlocked.com/thyroidu...

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...

Just Thyroid includes BOTH TPO and TG antibodies -£49

randoxhealth.com/at-home/Th...

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

£32 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/

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/getting-a-dia...

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Before considering booking any private consultation it’s essential to get all these tested

Frequently improving low vitamin levels will help thyroid work better …..or increase TSH if thyroid is struggling

Suggest she gets all retested and then repost with new results

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

[e-mail]

[Hedgeree]

Hi Zagbag,

There are some members on the forum that have managed to get a diagnosis of central hypothyroidism (CH), so hopefully you will get replies from them.

I was never able to get a diagnosis of CH despite having bottom of the range FT4 for many many years (now below range) Also I feel that I've had hypo symptoms since I was a teenager (now 50+) but never acknowledged by any GP.

It was a battle to get an endo referral but I got there in the end after writing to the GP and Practice manager. But still no diagnosis of hypothyroidism central or otherwise for me 🤔

I was eventually prescribed thyroid hormones for tiredness after a partial thyroidectomy for a large nodule but still no diagnosis of hypothyroidism.

As SlowDragon says get your friend to have full thyroid testing including antibodies and post them on the site so others can comment.

Also as others have found a referral to an endo isn't always particularly helpful. But hopefully someone will reply with a suggestion for a good endo that recognises CH.

Best wishes.

[Charlie-Farley]

Hi Zazbag

I said to someone the other day - Central hypothyroidism - rare or rarely diagnosed? I ponder on this.....

Central and Hashimotos are also not mutually exclusive, but could be one of a multitude of reasons why getting a diagnosis of Hypothyroidism is so difficult. My TSH has never got to 10 and I was in a right old mess when doctor finally confirmed diagnosis that ACTUALLY was made by a fellow sufferer. I wonder if that concussion in my mid 20's might be a contributing factor???? who knows?

Also on first scientific principles - it has never made sense to me why the medical profession value an indirect measure of a pituitary hormone over the direct measurement of thyroid hormones and ACTUALLY looking at symptoms.

Bearing in mind the pituitary can also be subject to a variety of dysfunctions due to disease or injury and a pituitary dysfunction and a thyroid dysfunction are not mutually exclusive both can happen at the same time. That's before we even factor in a problem with the hypothalamus........

Do these doctors ever ponder on these issues? Or just blindly follow guidelines (don't answer that) 😒

[Insomania]

I have completely given up with the GP.

I do acknowledge my “blood tests do not meet the criteria for referral.” But I do not agree with the prescribing of more and more prescription meds for individual symptoms, when the collection of symptoms points to hypothyroid or something going wrong in the HPT axis.

I recently asked GP for a private referral letter to obtain a second opinion. There seems to be a reluctance to provide, 4 weeks so far and I still haven’t received it (£40 charge I’ve ok’ed).

I got the Thyroid UK list and will book to see a consultant endocrinologist at a nearby private hospital who also works in the NHS (this one requires a referral letter, many do not).

[Meerkat1234]

Hello Zagbag. Like your friend I have been told I have large blood platelets and difficulty walking. I am sleeping downstairs as cannot climb stairs. I have been diagnosed hypothyroid and my dr said I could have Hashimotos or something else. What is MCV.

[Hypopotamus]

I had to refuse to leave the consulting room before my GP agreed to refer me. He got his own back when my appendix burst, and he told the hospital that I was an alcoholic (I'm tea-total) resulting in a massive operation to look at the pancreas before they found the appendix issue. 20 years later I have an incisional hernia to deal with.