Puzzled: Hi everybody. Hope u can help here. I'm... - Thyroid UK

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Puzzled

Nasturtion
Nasturtion
15 Replies

Hi everybody. Hope u can help here. I'm on 25mcg levothyroxine. My levels are fine but I know through experience that I dont feel right on that dose,much better on 50mcg of which I often manage to sneak my husbands 25mcg for a few days or double up on my own in the hope I can get a repeat prescription before it's due.my doc won't prescribe me anymore than 25s even though I've told him I feel crap on that amount. Now then. I can get mercks brand of levothyroxine in 50mcg from Cyprus when a relative goes over. Are they ok? Would it hurt to take on a regular basis?I just can't understand why my doc wont give me a little more if it makes me feel like I'm actually alive.

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Treepie

25mcg is a starting level. Post your results and ranges and let the members here comment on whether they are fine.

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Hidden
Hidden

Gps in a practice vary hugely in my experience. The one you are seeing knows very little if anything about thyroid treatment so you might want to have a conversation with some of the others until you hopfully get a better response. Thyroid care is very poor in this country generally and your situation is far from an isolated one. We have smilar posts everyday. You are entitled to your blood results which you can post on here for more indepth comment on what you doctor should be doing and maybe give you some information to work with or share with your professionals. I would confidently take medicine bought in a proper chemist in Cyprus. I would expect it too be sealed and labelled with both name and dose of each tablet.

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Nasturtion
Nasturtion
in reply to Hidden

Ok thanks so much . The medication that was brought me back is sealed in a box. Has dose on the tablet,information leaflet etc etc . All looks fine. Bought from a proper pharmacy etc. Even has on the box" prescription only" and the manufacturer is merck. My doc just seems so ignorant in all ways. I remember someone on thyroid UK saying that you should be treated with the amount that makes you feel well again and not just by the blood test results.

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Hidden
Hidden
in reply to Nasturtion

Yes the aim of treatment should be to relieve symptoms. Most people feel well with a TSH at or under 1.

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Alma1960
Alma1960
in reply to Hidden

I agree totally GP s dont seem to understand that test results are ok but the patient must be listened to as Well. Numbers arent the whole story. As Disraeli put it 'theres lies damned lies and statistics'.

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MaisieGray

Your GP doesn't understand that a dose as small as 25 mcg can in fact have a negative rather than a positive effect due to the feedback mechanisms in play. Put very simply, it can be enough to interrupt your endogenous thyroid hormone production (assuming you have a thyroid and some function) because the pituitary gland responds to the presence of the 25 mcg Levo by reducing its own production of TSH which in turn reduces thyroid hormone output; but not enough to make up that loss plus the original shortfall that necessitated having Levo in the first place. So the exogenous gain of 25 mcg may be less than the endogenous reduction, putting you in the hormonal red, as it were.

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posthinking01

well put she shud print your reply and give to gp

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Marz

Merck is a German company I believe and also prescribed/sold here in Crete. I was taking it when first diagnosed back in 2005.

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Misswaldingfield

Yes many GPs stick to the NHS guidelines that are set for “normal” TSH and T4 levels without regard for how the patient feels. When I saw an endocrinologist he told me that he was not worried about T4 levels as long as TSH was not below 0.1. I definitely feel better on a TSH below 1 and therefore I take another 12.5 mcg extra on top of my prescribed 75mcg. But 6 weeks before my annual blood test I take only 75mcg so that my T4 results are not elevated which would make my GP reduce my dose. It is sad that I have to do this. I saw other GPs in the past, but they all had been trained the same on the subject ☹️

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Jivedancer

I think they start you on a lower dose it takes time to work and your body to adjust your doctor should arrange blood test in a few months if not insist you get one maybe you are also low in vitamin b12 worth getting that checked

Sending best wishes

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Nasturtion

I get these checked often as I also have pernicious anemia and get a b12 injection every 12 weeks. Thanks

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magsyh

I use merck thyroxine. Euthyrox. I buy it £2 for a month supply of 50mcg or 25mcg. I buy it here and get it posted to me. If you want details pm me please. It is far better quality than what is prescribed here in uk. I got a private prescription but was fed up paying extortionate prices so did my research and found a good reliable source.

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SlowDragon
SlowDragonAdministrator

What are your ACTUAL results and ranges?

Just being Within range is not adequately treated, most Thyroid patients on Levothyroxine need TSH under 2, many people need TSH well under one. Most important results are FT3 and FT4

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if left on ridiculously small dose of Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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Nasturtion

Ok thanks everybody for your comments. Not sure what my tsh at the minute but last test was tsh about 1. O5 I think. Cut a long story short . I was took off levothyroxine after being on it for about 16 yrs as I was only ever"borderline". Three yrs down the line after feeling like I was dying slowly and doc saying it was anxiety ,diabetes ,this that and the other, I seen a locum who put me straight back on to levothyroxine. I should never have been took of it abruptly if at all.feeling amazingafter a few months after starting to take it again bloods were showing fine results. Slowly started to feel really poorly again so decided to start self medicating with doubling up or sneaking husbands tablets as doc says 25 was enough as my bloods were normal. I know that even if I take 100 for a few days I feel so much better.

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GKeith

Is your husband also on thyroid meds? Does he have the same GP or endo you do? I don't know where you are but I am in the States. You should take your husband with you and go to this so-called "doctor" and demand to have a higher prescription of T4, tell him why and don't take no for an answer. Tell him your symptoms and you should also question him on T3 and NDT. You need to get your optimum prescription and fast. This is nothing trivial; it is very serious and concerns your life. "Doctors" have absolutely no business saying they are trying to "help" you when they can't even get your dose right and are, in actuality, causing you considerable pain and hurting you. Good luck and may be peace be with you.

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