Test results

[Mellania]

Hi I have had my results from Medichecks and I am speaking with a doctor tomorrow! I have lots of hypo symptoms and I have been reasoning them away! Perimenopause, age etc… Medicheck suggested I discuss with my doctor I want to be informed when I have my appointment and this seems like the best place to get relevant and informative information

[SeasideSusie Remembering]

Welcome to the forum Mellania

Is this your first test?

Have you had a previous test with FT4 this low?

I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.

However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).

As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:

bestpractice.bmj.com/topics...

and another article which explains it:

ncbi.nlm.nih.gov/pmc/articl...

and another here:

endocrinologyadvisor.com/ho...

and another one:

academic.oup.com/jcem/artic...

You could do some more research, print out anything that may help and show your GP.

You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email ThyroidUK at

[e-mail]

for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.

[Mellania in reply to SeasideSusie]

Thank you so much SeasideSusie really great information. I have had a previous test in November

Text

[SeasideSusie Remembering in reply to Mellania]

OK, so two below range FT4 results which I think makes Central Hypo a very likely possibility.

You may have to educate your GP on CH so be ready with information from those links and as diplomatically as possible suggest he should look into it because you have "taken advice from Thyroid UK which is a thyroid charity recommended by the NHS for information on thyroid disorders who suggest that Central Hypothyroidism is as strong possibility" but it's never a good idea to mention the internet or forums!

Your GP may not accept your private test results, some do but many don't, and if he doesn't then you can reassure him that Medichecks uses accredited labs the same as the NHS. He most likely will want to do his own tests so you'll just have to hope that they come back with a below range FT4 too.

If he's going to do his own thyroid tests he must not do TSH alone, that doesn't show Central Hypothyroidism, he must do FT4.

Also, print off the list of signs/symptoms of hypothyroidism from ThyroidUK and tick off all that apply to show your GP:

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

There is a circadian rhythm with thyroid hormones and TSH is highest early morning and lowers throughout the day. Usuall we say to test no later than 9am to get the highest possible TSH when looking for a diagnosis of primary hypothyroidism. However, TSH isn't going to matter in Central Hypothyroidism, it's the low FT4 that you need so check out the fourth graph in this link showing that in healthy people FT4 is highest at 9am and lowest seems to be about 4.30-5pm so in your case maybe as late a blood draw as possible would be best:

thyroidpatients.ca/2020/07/...

Please come back and let us know how you get on.

[Mellania in reply to SeasideSusie]

Thank you so much 😊 I will let you know how I get on.

[Mellania in reply to SeasideSusie]

You were right, there is a definite lack of knowledge and resistance around this kind of blood test results! My doctor was sympathetic and did offer to speak with an endocrinologist and do further research. But..,.I’m not really prepared to wait so I’m going private! Just waiting for the list of doctors to come through on email. Thank you so much for your help SeasideSusie and all who got in touch! I felt knowledgeable and much more confident speaking with my doctor about this today!

[SeasideSusie Remembering in reply to Mellania]

Oh dear, but not surprised

When you have the list of endos, see who you can travel to and you can ask on the forum if anyone has any experience of them. Also put up a post asking if anyone has managed to get a diagnosis of Central Hypothyroidism from a private endo and consider using them, maybe if it's too far to travel they may do a Zoom consultation.

As we can't discuss individual doctors on the forum, although it is OK to name them to ask for feedback replies must be by private message so your post will have replies turned off but will still be visible and members will be able to PM you. Always do your own research to satisfy yourself before committing to paying for a consultation.

[Jamima]

Hi Melania - your results are very similar to mine, although my ft4 hasn't dipped below range, always just scraped into range. I've had a very difficult 3 years trying to get some help and I wanted you to know that central hypo (I think that's what I have) often has a low adrenal output component so it might be worth asking your GP for a cortisol test. SeasideSusie has posted some really helpful links which I've also kept to show my GP as I go in for another round of help. Good luck for tomorrow, be firm, your results are not normal.

[Mellania in reply to Jamima]

Hi Jamima , thank you for your reply… fingers crossed for us both getting the correct diagnosis and treatment, let me know how you get on too! I will certainly mention the cortisol level test to my GP… I get the feeling I will be referred tomorrow! I feel very well informed now thanks to SeasideSusie

[Jamima in reply to Mellania]

Yes, those links - I was shouting yes! to everything. Good luck for tomorrow.

[PixieElv]

Hi MelanieAs SeasideSusie says, it looks like central hypothyroidism. I have that.

GPs do not understands this and tell you there’s nothing wrong with you. Mine offered me antidepressants instead!

I had to pay for a private Endo to get a diagnosis and treatment.

Go armed with the information you got on here and insist that you get treatment. If you can afford it, go private. Thyroid UK has a list of great private Endos, you could ask for.

Treatment works just like normal hypothyroidism ie Levo or T3 (and in my case NDT), but you can feel well again.

Good luck

[Mellania in reply to PixieElv]

Hi PixieElv how did you find your private endocrinologist?

[PixieElv in reply to Mellania]

Thyroid Uk, this charity has a list. Ask Admin for the latest 😊

[Mellania in reply to PixieElv]

Which area of the uk is your endo?

[PixieElv in reply to Mellania]

South of London - Gatwick

[Hedgeree]

Hi Mellania,

I'm similar to you with a below range FT4. Despite being symptomatic I've been fobbed off by my gp and told to come back next year for repeat tests. It's taken a while but I eventually got an NHS referral to an endo and I'm now getting assessed but it's taking a long time.

Hope you have a good GP and get referred!

Best wishes.

[SlowDragon Administrator]

Extremely important to get vitamin D, folate, ferritin and B12 levels tested as next step BEFORE booking consultation with thyroid specialist

Likely vitamin levels are low

[Mellania in reply to SlowDragon]

Thank you, I will do

[Mellania in reply to SlowDragon]

Just looking back and all the above were in range last November, the ferritin was a on the lower end of the scale though