Do I need to see an endo: I take 100 and 7... - Thyroid UK

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Do I need to see an endo

Mumjos31
Mumjos31

I take 100 and 75 consecutively my doctor says my t4 a little low I said would it be best to see endo but he said no because I’m on the range - I’ve been taking levo for 5 years after docs initially said I was border line when I was 48 - I decided to take it cos I was tired all the time - I have hypothyroidism - docs said with meds’ I would loose weight but I put it on

34 Replies
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Do you have any results with ranges you could share ? Have you had vitamins and minerals tested ? - B12 - Folate - Ferritin - VitD ? If low in range then they could be the cause of your symptoms ...

Mumjos31
Mumjos31 in reply to Marz

Thanks for your help I’ll see what I can find out

It is absolutely imperative that you ask for a print-out of your results every time you have a blood test. Your results may be in-range, but that is pretty meaningless. You need to know exactly where in the range they fall. You also need to know exactly what your doctor is testing. If he isn't doing the right tests, it's absolutely meaningless. I'm afraid doctors don't know much about thyroid, and only have a vague idea how to interpret blood test results, so we need to keep an eye on them.

When you've got your results, with the ranges, post them on here - with the ranges - and we'll be better able to advise you about what's going on. But, as to the question: should I see an endo? I'm tempted to say no. The majority of endos are diabetes specialists with little training in thyroid and some weird theories. They could mess you up completely. Endos, despite their name, are not specialists in all hormones, as they should be, I'm afraid.

Mumjos31
Mumjos31 in reply to greygoose

Thanks for your hep I’ll find out more

greygoose
greygoose in reply to Mumjos31

You're welcome. :)

If you live in the UK, it is your legal right to have a print-out. Do not just accept verbal responses, because mistakes can be made. In a print-out, there are no mistakes. Just ring the surgery, and tell the receptionist what you want, and say you will pick them up at her convenience. :)

Hidden
Hidden

Oh no. Not ‘the range’. The b****y range. I am so tired of hearing those words in relation to blood tests. It’s what it says. It’s supposed to be an indicator to doctors of where you are in relation to FT4, Vitamin B12 or whatever. They’re supposed to use that information as guidance to support clinical judgement in how to treat you. Moses didn’t carve these magical numbers in stone and cart them up to the top of the mountain. Neither did he say ‘Keep taking the tablets!’

shaws
shawsAdministrator in reply to Hidden

The fact too, that there are so many different ranges depending on the machines the labs use. Why don't they use the 'old fashioned method' i.e. take note of the patients' clinical symptoms (they know none) and be intent on relieving these by whatever suits the patient's body, i.e. make sure FT4 and FT3 are in the upper part of the ranges and TSH 1 or lower.

Dr Lowe only took one blood test for the initial diagnosis and thereafter all emphasis was on the relief of symptoms.

Hidden
Hidden in reply to shaws

Absolutely. I’m told by my very good GP that they have ‘guidance’ that Thyroid blood results should be used in conjunction with symptoms when when deciding a way forward in dosage.

Problem is that GPs know very little about FT3 and conversion issues. This limits their ability to help even if they are willing.

Grrr ...

shaws
shawsAdministrator in reply to Hidden

I agree as the majority seem to only look at a TSH result alone and if it is 'in the range' (i.e. up to 5) they tell the patient they don't need an increase whilst ignoring the fact that clinical symptoms aren't resolving. Neither is the FT4 and FT3 checked when patient is still complaining.

Hidden
Hidden in reply to shaws

I know. I could scream. Many GPs now do FT4 but that tells them very little - except whether it’s ‘in range’.

Dr Lowe was a brilliant doctor. He worked on the same premise as the doctors who prescribed NDT before the synthetics were introduced.

Strange how the end of that era seemed to herald large numbers of people being diagnosed with fibromyalgia, chronic fatigue, obesity .....

I hasten to add that these conditions are not always thyroid related - but it makes you think 🤔

shaws
shawsAdministrator in reply to Hidden

A while after levo replaced NDT, they had to invent 'new names' for the symptoms which would have been relieved by NDT as small increases in NDT were given until symptoms resolved. Just because the patient was still complaining but TSH didn't rise to 10 (in UK) new names had to be invented.

Now, with blood tests and levo, it is those that have the priority and not disabling symptoms and if TSH is in range we wont have an increase neither do they check FT4 and FT3. Has any doctor asked if we had symptoms, or what were the symptoms? I bet not.

p.s. Dr Lowe - an expert on Fibromyalgia - stated that it could be relieved by T3 alone and with larger doses than normal.

Hidden
Hidden in reply to shaws

That’s exactly what I mean Shaws. If they treated according to symptoms, it’s possible that they could save millions in treating these ‘new’ conditions. Perhaps even enough to make T3 affordable on the NHS!

shaws
shawsAdministrator in reply to Hidden

Yes, I agree wholeheartedly. Instead - if a hypo patient complains, they get another prescription for the problem rather than the doctor realising it could be connected to hypo.

Hidden
Hidden in reply to shaws

Yes. A subject dear to my heart. I have a dx of Fibromyalgia which I know is thyroid related. It started when they stopped my FT3 after TT.

Too long a story to tell here but it’s in my profile/story.

NDT not working well for me so am moving towards returning to T3 only.

shaws
shawsAdministrator in reply to Hidden

I am sorry you also have fibro - a painful condition and you need T3 prescribed. Dr Lowe took 150mcg (in middle of night) so that nothing interfered with the uptake. He didn't have fibro but 'thyroid hormone resistance'.

All of these 'extras' which are prescribed for those who are hypo, it would be interesting to find out the total cost to the NHS, i.e. including appointments etc to 'other' 'experts'

Hidden
Hidden in reply to shaws

True. Then there’s ‘cascade prescribing’. Prescribe a pill and then prescribe another for the side effects; then another and so on.

Oh dear ...

shaws
shawsAdministrator

Hypothyroidism can cause weight gain but it is usually if our dose is on the low side (for us as individuals) and also levothyroxine can cause weight gain if on an insufficient dose.

verywellhealth.com/thyroid-...

Thanks for all the advise t nhs exemption runs out soon

Hidden
Hidden in reply to Mumjos31

Don’t understand - NHS exemption??

Miffie
Miffie in reply to Hidden

NHS exemption from prescription charges for those with chronic conditions. As long as you need thyroid meds you will have an exemption card. It needs to be renewed every five years I think. Having a card means all prescriptions are free not just those for the relevant condition. Renewal is easy, or used to be. Now retired I get free due to age so no longer require a card. I hope you have yours and remember to renew.

Hidden
Hidden in reply to Miffie

I have never had a card and qualified for free prescriptions when under 60 on grounds of thyroid meds and cancer. My brother in law also has thyroid meds and gets free scripts without card.

Miffie
Miffie in reply to Hidden

So you know about the exemption I thought that you did not know what it was.

I see from NHS website it is now a certificate that is issued. I had not kept up t date. I had one from the time they were introduced until I was 60. I know the pharmacy kept a note of the number so I did not need to produce it every time. Now 68 so it was a few years ago, hence my out of date knowledge. Apologies.

Hidden
Hidden in reply to Miffie

Don’t worry 😊. Everything is so complicated. I also had exemption for cancer.

Hidden
Hidden in reply to Miffie

I think some pharmacies do automatic renewals now.

Hidden
Hidden in reply to Miffie

Miffie. I’ve just been on NHS site and I see that hypothyroidism / hyperthyroidism is no longer listed. Whatever’s going on?

Hidden
Hidden in reply to Hidden

Oh heck. I’m on Lloyd’s Pharmacy site. Think there’s an error

Miffie
Miffie in reply to Hidden

OK it is on NHS website. Lloyds obviously need a quick update!

NWA6
NWA6 in reply to Hidden

Isn’t it listed as Myxoedema?

Hidden
Hidden in reply to NWA6

Think Mxydoema’s different Paula. I’ve got no thyroid and am surgically hypothyroid. Think Mxydoema is extreme end of hypo. Probably wrong 🙄

NWA6
NWA6 in reply to Hidden

Nope! I’m pretty sure that’s what the NHS list it as. Hypothyroid is Hypothyriod no matter what the root cause. I just renewed my certificate not long ago and I seem to remember that was the box to tick. HTH 🤗

Hidden
Hidden in reply to NWA6

Well researched Sherlock 😊

NWA6
NWA6 in reply to Hidden

Phew! I doubted myself there when you said you thought it was something else!! Lol

So I googled 😂

medical-dictionary.thefreed...

Goodness that is a service isn’t it? I know there are those who need this level of care.

I still have no idea what your original question ” Don’t understand-NHS exemptions??” was querying.

Hidden
Hidden in reply to Miffie

Neither do I 🙄. I’m 68 too and I’m much more confused than I was when I was 67🥴.

It’s a good service - but my niece has severe brittle asthma involving visits to specialist hospitals and heaps of medication to keep her alive. She doesn’t qualify. Something not quite right there.

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