What to concentrate on .....

[Jingley]

Following on from my last post. healthunlocked.com/thyroidu...

I have a GP appointment next week so, in preparation did a MMH thyroid test and got the results this morning.

TSH 0.08 mIU/L (.27 - 4.2) -4.8%

Free T4 (fT4) 21.1 pmol/L (12 - 22) 91.0%

Free T3 (fT3) 4 pmol/L (3.1 - 6.8) 24.3%

T4:T3 Ratio 5.275 

Now I know that if I show the GP this he'll just say that it confirms I need a reduction in Levo as he'll only look at the TSH.

(I know my FT4 is high but I don't function well with it much lower. I was first diagnosed by a GP who was hypo and after the initial testing/adjusting doses always asked how I felt. I'll never forget one thing she said to me -- "I see you like to run your numbers high to feel ok - I'm exactly the same")

My T4 has consistently been between 19-21 for years along with a below range TSH.

GP also wants to discuss cholesterol so I suppose I can use the very low FT3 to argue that that's a contributing factor, along with my very low ferritin levels.

My T4/T3 conversion is worse on this last test than the previous one. The only difference is I've stopped my HRT. (No intention of going back on HRT due to negative physical and psychological effects.)

Should I concentrate on pursuing treatment for low ferritin and argue the point that if that level is good then my T3 may well increase and my cholesterol decrease?

And should I be asking for Endo referral at this point?

It would be so much easier if my original GP hadn't left. Discussing a condition with someone who also has the same thing is so much easier than trying to explain exactly what hypo-tiredness feels like to someone who just doesn't 'get it'.

[pennyannie]

Hello Jingley :

At the risk of sounding like a broken record -

your ferritin needs to be investigated before supplementing and I read that no thyroid hormone replacement works well until ferritin is at least over 70 :

You should also ask for a referral to endocrinology as it is likely low T3 causing the symptoms of high cholesterol and all the guidelines suggest patients should get their thyroid hormone replacement optimal before being treated with other drugs for cholesterol.

Is there another doctor at the surgery who might be more thyroid aware - as it reads as though you have an uphill struggle getting heard and if nothing else a specialist in the field has to be better option - though there might be a long wait for an hospital O/P appointment.

[Jingley in reply to pennyannie]

Hi pennyannie I'm aware that my dire ferritin needs addressing but as it's "in range" albeit low, the GP just tells me to eat more iron rich foods and drink Guinness 🤨

Difficult to get an appointment with a competent GP at my surgery. There are only 2 permanent fully qualified doctors and one fairly newly qualified, with all the others being trainee GP's. The newly qualified one told me I probably had cancer when I went in with something that was totally ignored and the last trainee I saw spent more time running up and down the corridor to ask advice about a relatively simple thing.

[pennyannie in reply to Jingley]

From memory I think the guidelines require that a ferritin this low needs investigation -

I totally get it and why I now self medicate :

[Jingley in reply to pennyannie]

The problem is that what is recommended and what gets actioned are poles apart.

There are times I've said that I want to live in 1960's Poplar with Dr Turner as my GP - he at least seems to care about his patients 😁

[pennyannie in reply to Jingley]

Yes - I totally understand but would think if the Nice guidelines are not followed - the doctor responsible for your care, if reported, under the NHS ' cosh ' -

The doctor has a duty of care and the guidelines must be followed - that is what s/he is paid to do - blindly follow the guidelines - and in this instance the blood tests doesn't lie and just says it how it is - much too low - for you to be well and convert the T4 into T3.

First - check the guideline and if you fit the criteria - complain to the practice manager.

[Sparklingsunshine]

I'm sure any " discussion" about your cholesterol will include an offer of statins, GP's earn points for prescribing these and points mean prizes aka as cash bonuses for the practice.

Its entirely your choice of course but they can come with side effects, both short term and long term, including an increased risk of diabetes and dementia, and as you righly point out are associated with low T3 in hypo patients.

I think you are well within your rights to ask for an Endo referral with a view to getting a trial of T3 and I would defer starting any statins until you've managed to get your FT3 levels up. You look like a classic poor converter who needs high FT4 levels, just to get a medocre FT3.

[Jingley in reply to Sparklingsunshine]

I really do not want to take statins at all. Even the NHS website says that they're not a good idea if you have hypothyroidism.

Totally agree that my T3 needs addressing.

[GlowCoach Administrator]

You'll probably be needing to argue your case for staying on the same dose & GP will be using scare tactics telling you about risk of osteoporosis and heart problems with a below range TSH.

You can take responsibility for your low TSH with backup from the NICE guidelines:

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. “

nice.org.uk/guidance/ng145

Re ferritin, you havent given your result details or any other vitamins. Have you had B12, folate & D3 tested too & what were the results?

Are you now supplementing?

[Jingley in reply to GlowCoach]

All my lab results are in my profile but these are the latest ones from earlier this month.Vitamin D -- 106 (50-250)Vitamin B12 -- 536 (211-911)

Folate -- 18.3 (>5.4)

Ferritin -- 19 (15-200)

Quite happy with them all with the exception of ferritin but I do have to supplement to get them to that level. Without supplementing they plummet.

[GlowCoach Administrator in reply to Jingley]

If GP won't prescribe for the low ferritin level (they really should though) you can buy iron supplements over the counter but be aware that they are not all equal.

Many members do well with this product: threearrowsnutra.com/en-uk/...

[Jingley in reply to GlowCoach]

I think I may have to go down that route and monitor my own levels. I've seen that product mentioned here as being one of the better ones.👍

[Jefner]

hello I am on hrt although not at the optimal dose but just leaving things where they are until I can get my thyroid levels sorted. You said that it didn't suit you, in what way please, I am curious and what type of hrt were you taking

[Jingley in reply to Jefner]

Hi Jefner will DM you 👍