Is it worth me seeing my GP?

[Lemoncurd74]

It’s my first time posting about this and I’d like to ask for help from other people in the same boat as me. I have been running bloods tests using Thriva for a few years following an out of range TSH result about 6 years ago at my surgery. After hours of reading and listening to podcasts I realised the NHS don’t test the full thyroid panel hence me paying for the Thriva tests. I started testing for antibodies and have had TPO readings of around 150-199. I see a nutritional therapist and have continued to read books and literature from lots of different sources. These readings indicate Hashimotos and I’m aware a gluten/dairy free diet is recommended. However, I'm sure my friends and family think I’m mad, because I’ve not seen a doctor nor had a NHS diagnosis. Because I don’t suffer with too many symptoms they think I don’t need to give up gluten/dairy. I’ve booked a blood test at my surgery and would like to see a GP there to discuss the results but feel that it will be a waste of time as they won’t test antibodies. I do have concerns over long term health - autoimmune disease is prevalent in my family and my mum has MS so I think it’s understandable that I want to do what I can to help myself. I’d love to hear if anyone has felt like this. Thank you!

[Bluebell999]

I was told by my endocrinologist that GPs do not test T3 and antibodies, whether hypo or hyper. It costs the surgeries, so only the clinics order them

I had nearly twenty years of my rheumatologist overseeing my thryoid as I also have lupus and other autoimmune conditions. I never saw an endo in all that time.

I was told I had Hashimoto antibodies at the time of my diagnosis of lupus when everything else was tested and four other conditions confirmed.

It was only last year when I was increasingly frustrated by the lack of understanding by my GP and another postponed rheumatology appointment of 10 months, that I asked for a referral to one endo and the result was dire, no treatment ,no appointment, he didn't want to know, even though my ranges were all out repeatedly over four years and with ever decreasing doses of levo.

I asked for an endo appointment at another hospital, which my GP was happy to refer as I think she realised she was out of her depth.

It is this new endo who is very thorough, carrying out all the tests and giving me advice and support. She even sends me a copy letter of my consultations, whether by phone or in hospital. The result is I now have both Hashi and Graves antibodies at the same time but I am being cared for as having Graves.

Don't cancel your GP appointment, if possible make it a double appointment so you have time to discuss your results, any referral, and future testing. I would make a graph or simple spreadsheet or list, of all the tests and results you have had. If you can, print off a copy, give it to your GP and ask for this information to be entered onto your medical records.

I would also state your family history to make your GP aware of any underlying conditions you may be harbouring. You may also be referred to a rheumatologist, don't reject it out of hand. I have been told on here that autoimmune conditions "hunt in packs" If you have one you are more likely to get others.

It will be your endo who will sort you out with the further testing and treatment of your thyroid. I would advise you to go with the NHS as this is important, particularly with autoimmune conditions in your family.

I am neither a medical expert or nutritionist, but I do understand how restricting or removing certain items in your diet can affect how you feel, but it will not control your levels and could indeed make your thyroid worse if you need and refuse medication.

[Lemoncurd74 in reply to Bluebell999]

Thank you so much for your reply, it’s really helpful and encouraging. I have heard this about autoimmune conditions and think I’m a bit worried about the MS connection! I’m sorry you’ve had a lot of back and forth but it sounds like you’ve found a good endo doctor now. My problem is that I’m too focused on healing this naturally and completely forget about medication. Thank you for pointing this out. I’ll definitely make an appointment after my blood tests and take all my previous results along.

[tattybogle in reply to Lemoncurd74]

Hi Lemoncurd...

nhs GP's DO test TPOab (Thyroid Peroxidase antibodies) ~ IF the TSH ( Thyroid Stimulating Hormone) is consistently over range.

The do this to see if the cause of sub-clinical hypothyroidism is autoimmune and therefore likely to get worse over time and need replacement thyroid hormone (T4 ) eventually anyway.... if TPOab antibodies are positive the GP will be more confident to treat the hypothyroidism while still 'sub clinical' IF symptoms are causing problems.... and if symptoms are not causing a problem , (or there are no symptoms) then a positive TPOab result on record would mean they know to keep an eye on the TSH level in future to watch for signs of 'overt' hypothyroidism developing . (TSH over range AND fT4 under range)

(sub-clinical hypothyroidism means "TSH over range while fT4 is still in range")

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The antibodies that are usually ONLY tested by endocrinologists are different ones:

TRab (Thyroid Stimulating Hormone Receptor antibodies)

these are the ones that cause Graves disease ( hyperthyroidism)

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Autoimmune Hypothyroidism (Hahimoto's / Ord's) is usually diagnosed and treated by GP's , not endocrinologists.. but as Bluebell999 has both graves and hashimoto's together this makes things more complicated so that is why she has involvement from an endo .

Many of us on here with autoimmune hypothyroidism have never seen an endocrinologist... indeed endocrinologists will often refuse GP referrals for patients with uncomplicated autoimmune hypothyroidism whose TSH /fT4 results are back in range on Levothyroxine ... GP's usually deal with hypothyroidism unless there are problems with treatment.

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NHS 'can consider' starting treatment for sub-clinical hypothyroidism (with Levothyroxine which is replacement thyroid hormone T4) :

IF you have 2 over range TSH results (taken 3 months apart~ to rule out a temporary rise in TSH for other reasons)

AND symptoms of hypothyroidism .

Positive TPOab are considered as part of the decision whether to start treatment.

Some GP's don't bother testing them because the treatment for hypothyroidism is the same whatever the cause,.... but many GP's do test TPOab.

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Here are the NHS (N.I.C.E) guidelines for diagnosing and treating sub-clinical hypothyroidism :

nice.org.uk/guidance/ng145

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

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If you post your previous TSH / fT4 / fT3 result and any results for Vit B12 /Vit D /Folate /Ferritin..... on here, then we can give further details on what you can to do to improve things .

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Try not to worry too much about getting 'other' autoimmune conditions as well as Autoimmune hypothyroidism .. not easy i know ,if your mum has MS,,,, but the connection is more 'the other way round' ...

ie many people who have autoimmune hypothyroidism ( which is extremely common) do not go on to get any other autoimmune conditions ~ well. not 'serious' ones like MS or diabetes anyway , i have had autoimmune hypothyroidism for over 20 yrs and have no other autoimmune disease .

It is true there is a tendency for people to have more than one autoimmune condition , but when hypothyroidism is the first one to show up , it is quite common to have 'just' hypothyroidism and not get others.

however if people have one of the 'other' autoimmune disease FIRST eg diabetes ,, then they are MUCH more likely to end up with autoimmune hypothyroidism at some point as well.

i don't think i've explained what i mean very well there but hopefully you get the jist.

[Lemoncurd74 in reply to tattybogle]

hi there, this is really helpful thank you. You’ve made me feel a lot more relaxed about my autoimmune concerns. I’ve just made a note of my results over the last couple of years (via Thriva). I should compile a spreadsheet! I know these numbers aren’t too bad and the T4/T3 comes back as optimal, it’s the antibodies that concern me.

Picture of handwritten results

[tattybogle in reply to Lemoncurd74]

"I know these numbers aren’t too bad and the T4/T3 comes back as optimal, it’s the antibodies that concern me".

if i tell you i had antibodies of >3000 at diagnosis.... and for research purposes > 500 are needed to be considered 'a strong positive' for confirming autoimmune thyroid disease ....then hopefully that will reduce your level of concern about your antibodies a bit.

You have over range TPOab .. so yes, that means you have autoimmune thyroid disease , that part has already happened , nothing you can do about that. But it doesn't mean you well get anything else autoimmune , and even though you clearly have some degree of thyroid damage already from looking at those over range TSH levels ~ it may only progress very very slowly.

can you add the [lab ranges] for those fT4 /fT3 / vitamin tests ? is that fT4 quite low in range ?

Do you realise you already qualify for levothyroxine (T4 hormone replacement) from the NHS with those TSH results and antibodies IF you are already struggling with symptoms of hypothyroidism ?

i was diagnosed when TSH was 5.7 / 6.8..my T4 was still in range ..but i'd felt absolutely pants for 4 years and was a zombie by 4pm every day .

[Lemoncurd74 in reply to tattybogle]

I’m sorry you struggled for so long and really hope your symptoms are easier now. I think I’ve got my head in the sand about medication, because I have been focusing on reading about root cause, diet, supplements etc and I’ve been too afraid to talk to the doctor. I think I have some symptoms but it’s not affecting my life too much (apart from being obsessed about anything thyroid related!). I worry I will have to take higher and higher doses of medication but my thyroid will keep getting attacked. Sorry I’m waffling, I can’t bore my friends and family with this talk all the time 😒

Test results

[tattybogle in reply to Lemoncurd74]

that 's ok you can't bore us with thyroids waffle all you like .

The thing about taking thyroid hormone is ... once you have made the decision to replace the T4 that your thyroid is struggling to make enough of, and you start taking some T4 from a tablet instead ..... the thyroid is basically sent "on a holiday" anyway.

it isn't a matter of having to take more and more replacement T4 as more and more of your thyroid is destroyed .. it is a matter of having to take pretty much 'enough T4 for your body's needs' from the start. you are not 'topping up' the T4 you are 'replacing it'

The main reason T4 is introduced gradually and doses 'keep going up' for the first year or so , is to make sure we don't end up taking too much .... we are all very individual in what we need, so there is no way of knowing exactly what dose each person needs apart from trial and error , slowly allowing the body time to respond and react to each increase , and allowing it to make it's mind up if "that is enough" or "not enough yet" or "a bit too much".

The reason we can't just "top the low T4 up" is because of the complex regulating/ feedback system which controls how much T4/T3 the thyroid is 'asked' to make.

It is called the HPT axis (Hypothalamus / Pituitary / Thyroid )

The hypothalamus and the pituitary (together) sense the levels of T4/T3 in the blood ,,when T4/T3 are too low ,the hypothalamus asks the pituitary to make more TSH ( TSH is Thyroid Stimulating Hormone)

TSH is just a 'message' which asks the thyroid to make more T4/T3 . the higher the TSH , the louder it is shouting at the thyroid to hurry up and make some more T4/T3

When the thyroid has responded and made enough T4/T3 , the pituitary notices this and thinks "great, that's enough T4/T3 now , so i'll stop yelling quite so loudly at the thyroid and let it have a rest, and it lowers the TSH 'message' and the thyroid slows down how much T4/T3 it makes.

unfortunately the pituitary is a bit thick ... when we add some T4 from a tablet it can't tell it came from a tablet and not the thyroid .,,, so it still turns down the TSH level ,and the thyroid makes less T4 than it was doing before we added any T4.

The T4 we took lowered the TSH a bit , and so the thyroid simply isn't being asked to make as much any more. (if we lowered the amount of T4 we took, the TSH would go back up.. but if the thyroid can't make enough T4 because it is damaged , the TSH will KEEP going up, and we still won't have enough T4)

Very over simplified example:

your body needs '100 ' T4

you get hashimoto's and your thyroid can only make '75' ( and the TSH goes up but the thyroid cant make enough no matter how hard it tries because it's been damaged)

so you add '25' T4

for a couple of weeks you've got '100'

but when the pituitary notices the T4 went up , it lowers the TSH

So the thyroid has a bit of rest and only makes 50 instead of 75

so now you've got 50 from the thyroid + 25 from the tablet = 75

so you have to put the dose up to 50

then you have '100' again.

for a bit... but only until the pituitary notices the T4 went up, and turns the TSH down a bit more .

and so on .....until most of the T4 you need is actually coming from the tablet... and once the levels stay stable at the '100' you need , the TSH stays around 1 where it is 'happy'

at that point the dose stops going up.

and hopefully at that point you feel ok consistently ..(or if you don't ,you start tweaking other things to improve how you feel ~ some people find they need to add some T3 too , some just need to improve vitamin levels, or try a different from of T4 tablet)

How's that for 'waffling' ...lol

i'm going to bed .. that's enough thyroid for now ..i've bored myself lol

but come back whenever you want to ask anything about 'anything' no matter how daft ... we're here all year

x

[Lemoncurd74 in reply to tattybogle]

I will read this again a few times just to completely ‘get it’ but that was the most understandable explanation I’ve read! Thank you very much. I am starting to feel so much better about this thyroid journey I’m on and no longer on my own!

[tattybogle in reply to Lemoncurd74]

i just edited the 'numbers'.. my late night maths was a bit shonky

[SlowDragon Administrator]

I’ve booked a blood test at my surgery and would like to see a GP there to discuss the results but feel that it will be a waste of time as they won’t test antibodies. I do have concerns over long term health - autoimmune disease is prevalent in my family and my mum has MS 

With high thyroid antibodies confirmed by private test and your family history of autoimmune diseases GP should do thyroid test including thyroid antibodies and vitamins

[Lemoncurd74 in reply to SlowDragon]

I have asked before and they said no but I hadn’t mentioned the family history. I’ll see how the bloods come back and go from there.