anyone been told this by their dr

[BeeGee1962]

hi last week my dr told me I have Subclinical hyperthyroidism and wanted me to stop taking my medication for four months and she would do another blood test . The last time I stopped my thyoxrine all my symptoms came back . I have a phone call appointment tomorrow what should I say to her ? Thanks in advance

[PurpleNails Administrator]

Sub clinical usually means your TSH is low but your FT4 (& FT3 if tested) is in range. 

Your thyroid is not over producing you take replacement because function is failing & if your FT4 & FT3 is in range you are not over medicated either. 

If FT4 & FT3 are borderline high then it’s best to reduce current dose by 25mcg per day & retest 6 weeks later. 

What dose were you taking when you stopped & waiting 4 months is far from acceptable.  

Try to obtain your results, you need to know what doctors testing & basing decision on.

[Charlie-Farley]

Hi BeeGee1962

Firstly, you are on thyroxine so technically she can't say that unless she has had your TRAb tested and you have had a positive result. Do you have any test results you can share? No personal info on them, just results with ranges.

Do you think what she REALLY means is she thinks you are over medicated?

If so then to equate over medication with Graves shows the depth of her ignorance. In fairness, they don't really get taught enough to navigate thyroid issues full stop this is a systemic failing not an individual one.

MOST IMPORTANT IS - How do you feel? Have you any symptoms of hyperthyroidism? Have you had sight of your results? If she is only going by TSH and you currently feel fine and your FT4 and FT3 are within range she should not be mucking you about.

If she wants to treat the lab work rather than you I would not let her do this to you. NICE guideline give a guide on dosing of 1.6ug per KG of levo. I would emphasise this is only a guide to dosing, but is useful to know especially when GPs try to reduce dose based on a pituitary hormone (TSH) rather than considering the ACTUAL thyroid hormones.

I am on 150ug and had to fight for several dose increases.

[BeeGee1962 in reply to Charlie-Farley]

I don’t off my dr but I did go and get my bloods done private

Results

[Charlie-Farley in reply to BeeGee1962]

Ok so if the results from your doctor are anything like your private bloods she is dosing by TSH 😱

Do you know your weight in KGs? We could work that out too😉

[BeeGee1962 in reply to Charlie-Farley]

hi 74.843

[Charlie-Farley in reply to BeeGee1962]

Brill,

so 74.84 x 1.6 = 119.7

So if you are feeling fine don't let the doctor reduce your meds at 100ug of levo you are not even at full guideline dose as given in the NICE guidelines.

Your FT3 and FT4 are not above range. The only thing that is not within range is your TSH which on 1st scientific principles should NEVER have been picked as the guide to treatment when there are two perfectly good thyroid hormones to be tested.

Ultimately, EVERTHING should be related back to your well being. HOW you feel is the MOST important guide for any Doctor. Tests are a blunt tool if not calibrated to the patient - We are all different .

TSH is a pituitary hormone and there are many things that can affect the pituitary and make the measurement of TSH unreliable - illness, head injury (whiplash type as well).

Guidelines give doctors latitude to treat to get the patient well not just to play with lab results. 😉👍

[BeeGee1962 in reply to Charlie-Farley]

I have had whiplash years ago and I’ve still got a sore neck . Thank you so much for all your help

[Charlie-Farley in reply to BeeGee1962]

GPS frequently don't join up the dots, but they are not encouraged to. We have to do it for them - It may not be the cause of your low TSH, but it may just cast sufficient doubt for them to stop relying on it and do what they should all along which is go by symptoms first and just use measurement of thyroid hormones as a guide.

[SlowDragon Administrator in reply to BeeGee1962]

Whiplash can cause thyroid/pituitary issues

[Pooty in reply to SlowDragon]

wow that is great information thank you SlowDragon as I too have had whiplash 4 years ago after a car accident and still suffer with my neck and see my chiropractor about my injury!

[SlowDragon Administrator in reply to BeeGee1962]

Was this test done early morning and last dose levothyroxine 24 hours before test

FT4: 19.3 pmol/l (Range 11.9 - 21.9)

Ft4 only 74.00% through range

FT3: 4.5 pmol/l (Range 3.1 - 6.8)

But Ft3 is only 37.84% through range

This shows you are NOT over medicated

But you are a poor converter of Ft4 to Ft3

With such low Ft3 it’s highly likely you have low vitamin levels unless supplementing and testing regularly

Refuse to reduce dose levothyroxine and request GP test vitamin D, folate, B12 and full iron panel test including ferritin

Looking at previous posts, you were taking T3 alongside levothyroxine……..was this prescribed on NHS/private?

but no longer on T3 now?

You have Hashimoto’s

Are you on strictly gluten free diet and dairy free diet

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Ask GP to refer you to endocrinologist of your choice

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who prescribe T3

[e-mail]

[missrees in reply to SlowDragon]

Good Morning SlowDragon - how can you tell BeeGee1962 has Hashimoto's? Is it the mid-range Anti-TPO?

[SlowDragon Administrator in reply to missrees]

BeeGee1962 had high Thyroid antibodies in previous tests

healthunlocked.com/thyroidu...

[BeeGee1962]

I stopped taking t3 a long time ago because of the hassle off dr . My ferritin is high it’s 247.3 way above range . My bit D is 83 range 50-375 don’t know b12

[SlowDragon Administrator in reply to BeeGee1962]

How old are you

Higher ferritin is common after menopause

Ferritin up to 650 is considered “normal “ over 60 years old

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Hashimoto’s can cause higher ferritin levels too as Hashimoto’s is inflammatory and ferritin reacts to inflammation

Important to do full iron panel test every couple of years to check if iron is too high or too low

EXACTLY what vitamin supplements are you currently taking?

Important to test folate and B12 at least annually. Many Hashimoto’s patients need to supplement vitamin B complex continuously

[BeeGee1962]

should I go gluten free would that help ?

[Regenallotment Ambassador in reply to BeeGee1962]

It really helped me being gluten free, I'm now grain free, my tummy health is so much better. dairy free was the game changer though, had no idea I was lactose intolerant.

[Charlie-Farley in reply to BeeGee1962]

On a lighter note and possibly oversharing Going gluten-free sorted my gut. I used to be really pumpy! 😱😂

[SlowDragon Administrator in reply to BeeGee1962]

Like many other Hashimoto’s patients, I found strictly gluten free and dairy free have both been astonishing improvement, and extremely important to maintain GOOD vitamin levels too.

But I still need addition of T3 alongside levothyroxine …. (3 x 5mcg per day …prescribed on NHS)

[BeeGee1962 in reply to SlowDragon]

thank you so much for all your great advise

[Charlie-Farley]

SlowDragon nails it again! Superb advice and links. Might want to print the NICE guidelines - I find they do not seem that familiar with them. 🙄

[Charlie-Farley]

If you get a chance at some point just fill in your bio with your thyroid journey and anything else that might be significant health wise - things can be connected or influence one another. Having a summary is so cool and helps others to see whats been happening - Mine is detailed and written as a case study in the hope it will help others but there is no need to do 'war and peace'. I give mine the odd tweak and update and it's interesting to look back on the journey.

[Pooty in reply to Charlie-Farley]

this sounds really interesting I think I would like to try doing my own bio, do you have any ideas for me to start please?

[Charlie-Farley in reply to Pooty]

Hi Pooty 😊

I literally started from diagnosis and went from there though if you can identify symptoms and how long you had them before diagnosis that could be useful and any other issues. I had lots of joint and tendon issues before I got on full therapeutic dose. If you click on my face it will take you to my profile and the bio starts with being my own health advocate then the rest of the blurb drops down. I wrote it as a case study to hopefully help others 🤗

[Pooty in reply to Charlie-Farley]

Ive just read your bio which is great by the way. Very informative and fab idea. Think I will definitely do the same thank you for the idea. Can I ask which brand you are on? Wishing you good health and wonderful days ahead 🫶

[Charlie-Farley in reply to Pooty]

I’m on the marmite brand! Teva 😂👍

It’s good to do a bio because it’s a sort of précis of your situation and can help when getting advice or even sharing your experience - saves a lot of typing 🤣👍

[Pooty in reply to Charlie-Farley]

Do you suffer with sinus headaches with Teva at all?

Yes I can understand that very well 😂😂

[Charlie-Farley in reply to Pooty]

Not a thing — I used to get sinus problems when undiagnosed and when under medicated, but as most things - it cleared up when on full therapeutic dose and vitamins optimal and gluten-free. Bit of a coincidence 🤔😊👍

[Kapuna]

Did she test the T3and T4? If they are both normal and only the TSH then I would ask her why you have to wait four months. I think by six weeks she should have an answer as should you about whether your thyroid is normal.

[Hidden]

This is precisely the sort of post that makes me need breaks from the forum.

The ignorance from GPs never fails to astonish me and the total failure to treat thyroid patients competently... Not even well... Just the basics just seems to be completely lacking. Leaving so many patients unwell.

BeeGee, you're not subclinical once you're on treatment!! What you are is under medicated. Push back hard on this and refuse to come off your dose.

Would your GP ask a diabetic to come off insulin to PROVE they need it?? Sounds absurd, doesn't it?

Best of luck 🍀

[Gingernut44]

Please do NOT allow your GP to stop your Levothyroxine, you are not even over medicated let alone subclinical hyPER. This doctor is dangerous and doesn’t seem to know how to treat hyPOthyroidism. I speak from experience - this is exactly what my GP did to me, not because my TSH was low but because I was having terrible side effects from Levothyroxine. He just said “well, stop taking them then and have a blood test in 6 weeks” 😱I haven’t been well since, the absence of any exogenous thyroid hormone for six weeks has caused me so many problems. My GP didn’t even take into consideration that I’d had RAI 10 months earlier and had been started on Levothyroxine by an Endo. That’s when I found this forum, unfortunately too late to protect myself from dubious treatment from Endos and GPs.

[holyshedballs]

Say to your Doctor:

Thank you for your clinical information. However, I have consulted other reliable sources for additional information. As I feel good at the moment and I have no signs and symptoms of hyperthyroidism I want to remain on this dose of thyroxine.

I do not think it is ethical to stop my medication when we both know my signs and symptoms will recur, causing me harm

The prudent course of action is to monitor my hormone levels and my signs and symptoms together. If you are concerned about atrial fibrillation we can check my heart with regular ECGs. If you are concerned about osteoporosis, you can send me for regular DEXA scans or other bone density monitoring.

if there are any detrimental changes in the future, we will discuss them together.