SELF MEDICATING ON THYROID: HOW CAN YOU SELF... - Thyroid UK

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SELF MEDICATING ON THYROID

43 Replies

HOW CAN YOU SELF MEDICATE FOR HYPO- THYROID IN ENGLAND?

Can you just read up on thyroid and choose a dose, then order it? How is it done?

not for me, my sister thinks she has it because she is diabetic, and I was born with it!.

Not a good reason, but she wants to know as her thyroid is borderline.

sorry about the capitals - tech problem.

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43 Replies
SeasideSusie profile image
SeasideSusieRemembering

The best thing to do is get your sister to join the forum and post her results including their reference ranges. We can then offer her some help.

Tests needed are

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

Test should be done no later than 9am before anything to eat and only water to drink.

If she takes any supplements then don't take any on the day of the test until afterwards and if she takes biotin, B Complex or any supplement containing biotin then leave it off for 3-7 days before the test.

in reply to SeasideSusie

Thank you, Susie, she really just wants the thyroid, and be like big sister - me. . She would not do private tests . I took us 5 years to persuade her that 25 stone was not good and she would become diabetic, and also have arthritis through carrying the weight. She wouldn't accept the diabetes verdict when it came, so had to go straight on to insulin injections. And now she has some arthritis and won't walk anywhere. If she has thyroid trouble, the other sister will convince herself she has it. They are 68 and 74. Now they both think they were 'congenital thyroid' because I am. they think I'm the daft one. Apart from doing the enquiry for her , what else can a sister do? They are both much bigger than me. So please can you tell me how she can get self medicated, so I can convince her not to even try. She sees a diabetic nurse, but not a doctor.

*The next thing will be her daughter needing it, aged 50 and about 28 stone. As she hasn't even had a vaccine yet because of needles, I can't even try to persuade her to do blood tests. .

SeasideSusie profile image
SeasideSusieRemembering in reply to

she really just wants the thyroid, and be like big sister - me

Oh good grief, why would anyone wish to have thyroid disease!

So please can you tell me how she can get self medicated, so I can convince her not to even try.

I'm having difficulty understanding what you're saying there. Of course I'm not going to tell you how she can get self medicated and none of the responsible, experienced responders here would tell her. We would be very irresponsible to do so unless we could see test results and know that she needs it.

And what would telling you how she can get self medicated do to convince her not to?

in reply to SeasideSusie

Thank you, I do understand . Of course you can't tell me that, and I can legitimately tell her that "- I have asked proper sources, and am unable to find the information. No responsible person would ever tell you, anyway." - She will probably respond well to those words , and it will convince her not to try . But not if I say you can't buy it. that won't work. I think her husband would say don't be so b** daft, but she'd ignore him. I have known her for 68 years.She could still look on ebay, facebook or google it, but without my knowledge.

I do what I can, but she won't insist on seeing the doctor to ask for a full test.

---just had a thought., She says she would rather die of anything than cancer. She was with her friend as she died with thyroid cancer. Maybe she is afraid to get thyroid problems.

I don't need to know for myself about supplies. I am a lifer, got 3 months of 100 mcg in the box. but I keep seeing 'self medication' on the forum and was intrigued by how people actually do that. Is that in USA. ? I am not used to working a forum yet. I have an insatiable curiosity, sorry.

SeasideSusie profile image
SeasideSusieRemembering in reply to

got 3 months of 100 mcg in the box.

I thought you were on 200mcg?

tattybogle profile image
tattybogle in reply to

? this is an odd reason to be asking for information about how to source medication .

You told us yesterday that think it's dangerous to risk buying online and self medicating...... and indeed it could be, if not done carefully.

(sources for buying prescription medication without prescription must not shared on the open forum, it's against the forum rules)

For this reason , people on here who self medicate will want to be careful and responsible about making sure that anyone they share this information with privately , does actually need thyroid hormones, and does know what they are doing with them .... before sharing sources for buying genuine thyroid hormone.

You say you want the information 'to persuade your sister not to do it' but i think it would be irresponsible of anyone here to give you details of where to get thyroid hormone for your sisters without a prescription at the moment .

if your sisters have concerns about their thyroid hormone levels then the first step is to ask us for advice on their latest thyroid test results if they are willing to share them , or get them to join and ask for themselves.

in reply to tattybogle

Its too complicated to explain fully, Seaside Susie. it is little sister asking me if I can buy thyroid. I say No, but she asks if I can find out, so I have put the question on the forum. the other sister is mentioned only because if little sister knows she has it she will demand it". I am not supplying to the family. I am wanting to dissuade one not to even try. I'.ve done my bit and and can say truthfully that I can't buy thyroid. which was all I wanted to ask. but thanks for replying.

tattybogle profile image
tattybogle in reply to

in a way ,i would say their reluctance to do blood tests raises more of a concern than the idea of self medicating itself does. if someone is really not able/willing to handle the idea of occasional blood testing, then that totally undermines their ability to treat a thyroid problem (or even find out if they have one), ... and this applies regardless of whether that treatment is sourced via the NHS / private Endo , or by self medicating as a last resort if those options have been tried and are not satisfactory.

'Getting some blood out' one way or another at least once a year , and preferably more often is pretty vital for treating hypothyroidism safely and effectively .

Even when we have lots of information from 'regular full blood tests +symptoms', it can be difficult (even for experienced patients) to know whether a problem is happening because the dose needs to be increased , or decreased ,or if it 'something else' entirely which is causing 'whatever the problem is' ... so trying to do this without any testing information at all is really like 'shooting in the dark' ... it can easily lead to 'shooting self in foot'

To address some other points you've mentioned :

thyroid cancer has no relationship to being hypothyroid or not , so treating hypothyroidism will not do anything to prevent thyroid cancer.

but there is a direct relationship recently discovered between T4 levels and the proliferation of some other kinds of cancer cell (not thyroid) ..

higher T4 levels = more "proliferation"... (i forget the exact details , see jimh111 's posts if interested click on his name in blue and look at posts on his profile page ) ,, so it's possible that by increasing T4 levels from where they are naturally , your sister may actually be increasing her risks for problems with some other types of cancer.

MaSet profile image
MaSet in reply to

Hiya, I wonder if theres chance that little sis being overweight, mistakenly believes thinks thyroid meds may help her loose weight?

tattybogle profile image
tattybogle in reply to MaSet

earlier replies seem to suggest she's been told by NHS GP's that she has 'borderline' thyroid results on at least a couple of occasions....... so we can't be sure she doesn't have a thyroid problem. Some GP's interpretation of the term 'borderline' is TSH 9.999 . and fT4 12.01 [12-22] which quite plainly is not borderline' , but 'hypothyroidism that needs treating' if the person has symptoms.

Lalatoot profile image
Lalatoot in reply to

Mother 81 as thyroid medication is prescription only in the UK the only way your family could get it without prescription is to import it from a supplier abroad. To do that they would need to find a supplier that didn't just take their money, a supplier that didn't sell fake goods. They would also need to know what they needed to ask for amongst the different types of thyroid meds and different brands. There are lots of fake sellers and fake products so it is very easy to lose a lot of money or to be sold bad or useless products.The folks who self medicate can only do so by knowing how the thyroid works, monitoring their thyroid hormone and vitamin levels by having regular blood tests every 4 months initially, and by understanding the effects the different thyroid types tablets have on levels and results.

Really the only way to start is through the GP and blood tests. Self medicating is the last resort for those who can't get well after the NHS route has failed to meet their specific needs.

in reply to Lalatoot

Thank you so much. It seems a very difficult way to care for a tiny gland.

Lalatoot profile image
Lalatoot in reply to

From what you have said in previous posts you have been fortunate with your doctor's mostly and your body has responded well to t4 only treatment.For many this is the case but they are not the ones on here

On here you find the minority who have not been well treated by doctors or for whom the normal treatment of t4 doesn't make them well. There is little flexibility of thyroid treatment in the UK so to find health folks are forced to look elsewhere. Though some like me manage to get it from the nhs, others need to find health through private endocrinologists and others by self medicating. Private treatment can be too expensive an option for folks partic if they are not straightforward cases and need more monitoring and blood tests. Even with private prescriptions the alternative thyroid hormone meds are expensive in the UK compared to abroad so it is much cheaper to buy them either via the internet or when on holiday abroad .

Lalatoot profile image
Lalatoot in reply to

Forgot to add we are not caring for a tiny gland. Many on here have no thyroid so we need to ingest the hormones a normal thyroid would make. A normal thyroid makes mostly T4 but also makes a little T3 and a tiny amount of T2 plus some other things. Some folks, and I'm one, don't feel well taking only T4 levo; we also need to take the other hormones that the normal thyroid would produce. So some take T4 and T3 often referred to as combo treatment; others take desiccated animal thyroid NDT to get the T4 and other things a normal thyroid would produce if they had one.The other thing to understand is that many of us have been ill for a long time prior to proper treatment. Our body during that time has adapted, rewired and changed to let us survive with dodgy thyroid hormone levels so we are not speaking about normal bodies and normal conditions on here; we are speaking about systems that are broken, that are abnormal, that need individual solutions to make the best of a faulty body.

Jazzw profile image
Jazzw in reply to

If you don’t want her to try, why are you even asking the question? If you genuinely don’t know the answer it seems she won’t get very far. If she figures it out from googling, she’ll likely discover the extortionate cost and be frightened off that way instead.

When people ask here how to get their hands on thyroid medication it’s an unwritten rule that we always ask why they want it—regular posters will always recommend against going it alone.

For what it’s worth, by the way, being overweight doesn’t always lead to diabetes and/or arthritis. You seem quite judgemental?

in reply to Jazzw

IF you read it, it is quite clear that I want to dissuade her. She is 68, not a child. I know her better than you do and have to use what I think might work..; That counts also for knowing how long she was overweight and her habits, and almost watching it happen. Don't judge me!

Brightness14 profile image
Brightness14 in reply to

I actually wish my sisters cared about me the way you do.

in reply to Brightness14

I could adopt you. it would be nice to have a little brightness.

Brightness14 profile image
Brightness14 in reply to

I actually was adopted back in 1946, my eldest sister died back in 2001, she found me back in 1994. The most wonderful day of my life when she rang and told me. The other two don't bother with me. Thank you.

Klenke profile image
Klenke in reply to

Her weight will increase if she has under active thyroid.

RedApple profile image
RedAppleAdministrator

mother-81, 'Can you just read up on thyroid and choose a dose, then order it?'

Thyroid hormones are prescription medications in the UK. So no, you cannot simply 'order' them within the UK. You need a doctor to agree the diagnosis of hypothyroidism and write the prescription.

And no, you don't just 'choose a dose'. The amount of thyroid hormone a person needs to take will depend on their individual needs and is determined by blood test readings alongside symptoms.

in reply to RedApple

I didn't think we could do it in UK, but wondered how people do self medication. I've been on it since 1942 with no problems. its just this curiosity of mine, that says how -why--etc. gets me in no end of trouble.

thanks for replying anyway.

greygoose profile image
greygoose

I'm surprised you ask that question, given that you think buying thyroid hormones on-line is 'stupid and dangerous'. Personally, I don't think I would answer any more of your questions because I don't know what you would do with the information.

in reply to greygoose

Please read message between Seaside Susie and myself, and also my reply to Red Apple.

Did I say I wanted to get drugs online. No, I didn't . You have assumed.

What would I do with information? absorb it and delete.

I want more than translating people's numbers. its frustratingly boring, so I'll be asking more non dosage questions.

greygoose profile image
greygoose in reply to

I did read your replies to Susie and RedApple, and they don't make much sense.

No, you didn't say you wanted to get drugs on-line - I presume you mean levo, which isn't a drug, it's a hormone - but you implied it. How else do you think people self-treat? lol Where do you think they get the hormone?

As for 'translating people's numbers', that's what we do on here. I don't find it boring, I find it fascinating. And, it's something every hypo should know how to do. I'm guessing you are grossly under-medicated - most people are - but you won't know that unless you learn how to interpret your 'numbers'.

in reply to greygoose

I had never heard of people self treating for thyroid hormone before reading it on this site. , you do hear people in the media saying how they were told about a certain drug and they got some, and they felt great. so people rush to get on the bandwagon.. It was the same when HRT came out, and the pill. been there!

I thought self treating is when you self-diagnose and decide your own dose. it used to be so. Applying that specifically to the thyroid really concerned me. I know what it can do, in theory and long experience. How on earth can inexperienced people know what to get and how do they get hold of supplies??? They'll make themselves ill. That was the simple root of my question when I thought that this was just UK - only a week ago.

Will this teach me to worry about issues like that, No, it's just me.

ps I can read a whole blood test and understand it, Th and I are well managed and have 200mcg a day.

And I don't understand why you don't understand my plain english language.

greygoose profile image
greygoose in reply to

I thought self treating is when you self-diagnose and decide your own dose.

No, it's not. Some people, who know a lot about thyroid - a lot more than their doctors do - may be able to see that they are hypo whatever the doctor thinks! But, it's more likely to be people who are poor converters and unable to get T3 from their doctors. Or, if it's T4 they're buying, it's because their doctors will not give them a high enough dose to make them well. It happens a lot more than you might imagine.

But, nobody 'decides their own dose'. Those that know about thyroid know that that would be insane. If you know anything about hormones you know that you always start low and increase slowly until you hit your sweet-spot. It is a long, tedious process. But, at least if you're self-treating you are more likely to get to your sweet-spot than with a doctor dictating to you.

And no, they won't make themselves ill. We're talking about hormones, not drugs. I don't think levo has ever killed anyone, unlike a hell of a lot of doctor-prescribed drugs. They kill people every day.

Well, actually, your 'plain English' is not very clear. You do not make complete sentences. But, perhaps I'm expecting too much, being and English teacher. There would be a lot of red pen on your copy! But, I was just talking about your grammar when I said you don't make much sense, it's the thinking behind what you say. Who on earth would want to learn how to self-treat just so that they can persuade their sisters not to do it?!? No logic in that, and I find it very suspicious.

I can read a whole blood test and understand it, Th and I are well managed and have 200mcg a day.

So, what do you get tested? The full thyroid panel? TSH/FT4/FT3? If you need 200 mcg a day, either you have a none-absorbing gut, or your conversion is very, very poor. I don't think you do know an awful lot about thyroid.

in reply to greygoose

I joined thyroid uk to find other people with the condition, and learn how they managed them, hoping to find some older people as well. I did not join for lessons in grammar as I have never had complaints before. and there is some terrible ejnglish use on these sites. I have not ever joined a forum before. You are making this a very bad experience. If you are a teacher, go and learn some good manners. Do notever reply to me again.

greygoose profile image
greygoose in reply to

OK, I won't. But, I am another older person. I'm 77. Not far behind you. :)

Oh, and speaking of manners, it's good manners to say thank you when someone takes the time to answer your questions, even if you don't like the answers. And, you did invite me to comment on your English... Oh, well...

helvella profile image
helvellaAdministratorThyroid UK in reply to

there is some terrible ejnglish use on these sites

In general we don't comment on the language members use - except to achieve clarity. That is, if a word could confuse, we might ask if they meant A or B. Indeed, to the extent of NOT correcting mistakes when we quote existing posts.

There are many reasons members might not post in "good" English.

Some might struggle with any writing/typing but have had to overcome their difficulties to try to get some help.

Some only have English as a second (or third, or fourth) language.

Some might have learned a variant of English other than standard British English.

Some find that their health issues impact on brain and eye function which makes things difficult.

Some have to get by on a phone which can make typing difficult.

Some have had little contact with digital communication and don't understand things like editing their posts. Even editing text as they type.

Some might have to use voice recognition systems to type anything, hence accrue the interpretation issues they usually exhibit.

Pixielula profile image
Pixielula

Hi mother 81, can I ask a question how does she know her thyroid is borderline? Has your sister had a thyroid blood test, Or is that a guess?

waveylines profile image
waveylines

This is a strange post. It makes little sense. Honestly you need to leave this with your sister/s and their doctors. Hypothyroidism is a medical condition that I would not wish on anyone. Frankly if your sister has the idea she wants to self medicate than that is up to her.......its not for you to disuade her by finding out for her how you do it! Thats a nonsense.

Its clear your 'sister' is very unwell and has a complex medical history so this should definately be dealt with by her doctor. If your sister refused to be tested then really the doctor wont be able to assess her properly. Its also her perogative if she doesnt want testing. She may not be hypothyroid at all!! Weight gain is one symptom of hypothyroidism, there are many others but you would know this having been so all your life.

Walk away from this -your sisters are adults and need to deal this with themselves and their doctors.

in reply to waveylines

People aren't reading me . My sister has not asked to self medicate, she asked if you can buy pills for thyroid, and I said I would look. Have checked information and passed it on. Done my bit. She does have proper blood tests which sometimes show borderline, and she is diabetic. That is all that is wrong with her, apart from mild arthritis. She is well managed by her practice, apart from a lifetime of aversion to medical opinion. I can't help her there. Other sister wants what we get, you know the type.

waveylines profile image
waveylines in reply to

You are right I dont get it really.....its not a good idea to buy thyroid meds and just take them especially with something like diabetes! You said she wouldn't do a blood test so am lost with you saying now she does test! I suggest she comes online & asks her own questions.

As for your other sister wanting them because you take them.....shes old enough to know better so I dont know why you are even entertaining it....Id tell her to get checked and ignore after that.

in reply to waveylines

She has blood tests at the GP practice, but would never do an online test. that is simple. She just asked if you can buy thyroid tablets.

This has been blown up. other sister is not relevant.

tattybogle profile image
tattybogle in reply to

'Borderline' is rather vague terminology..... (people are treated by the NHS for hypothyroidism with 'subclinical hypothyroid ' results if they have symptoms, especially if antibody tests show they have autoimmune hypothyroidism which slowly damages the thyroid)

So if what the GP ,means by 'borderline' is 'subclinical' hypothyroidism (TSH is over range , but fT4 still within range) then once this is confirmed by a second test 3 months apart , if the patient has symptoms of hypothyroidism that cause them problems , the current NHS guidelines say GP's "may consider a trail of Levothyroxine" to see if it improves symptoms. If your sister has been told she has "borderline" thyroid results on more than one occasion, and she has symptoms of hypothyroidism , then you shouldn't rule out that she may well actually need thyroid treatment ,and she may well be able to have it on the NHS .

She can ask GP's reception for a printout of her latest results so she can find out just how 'borderline' she really is....some GP's have a much more conservative idea od what borderline means than others , and as you have discovered for yourself some GP's are better at thyroid treatment than others.

Results to ask for :

TSH (Thyroid Stimulating Hormone) result and [lab range]

fT4 (Free T4 / Thyroxine) result and [lab range ]

TPOab (Thyroid Peroxidase antibodies) result and [lab range]

SlowDragon profile image
SlowDragonAdministrator in reply to

but would never do an online test.

But she could pay extra for private blood drawn at a near to her clinic….or more expensive….a nurse can visit her at home

Medichecks or Blue Horizon offer this service

Important to test thyroid levels early morning, ideally before 9am

She needs thyroid, including thyroid antibodies and vitamin testing done if going to test privately

Only do private testing early Monday or Tuesday morning

If TSH is over 5 and symptoms she should be started on levothyroxine via her GP

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

jimh111 profile image
jimh111

Patients can get thyroid hormone on the internet without a prescription but it's tricky. I have done it once and found the tablets not so effective. I believe they were genuine tablets but we don't know how well the seller looks after them, whether they are kept in a cool dry place. You really do need a blood test to get started, to have an idea of what is going on. There are cheap finger prick tests available that are reliable, but perhaps this might be a problem also?

Higher T4 levels are associated with cancer, so taking thyroid medication if you don't need it could make things worse. Hypothyroidism carries many risks and should be avoided. Initially you really need a blood test to start making a diagnosis, although I was severely hypothyroid with good hormone levels.

in reply to jimh111

Thank you for that nice calm impartial information . IT is Very welcome. I'm not looking to buy for me , just asked simple question for my sister ---can you buy thyroid? meaning in UK. what a storm.

I am a bit familiar with hypothyroidism - was born with it, diagnosed in 1942 in Great Ormond Street. Always had excellent care from nhs.

I have never had any information about it, and never met anyone with it. it's lonely. As an adult I've had no-one to swap notes with, and nor did my mother.

I've been researching for about 8 months, but haven't found anything about T4 and cancer.

Have I just missed that? My levels are usually between 22-26, dosage 200mcg all under control, My Gp worries about heart attack if its high, but has never mentioned cancer. Nor has my consultant.

Should I be worrying about this do you think? I usually reckon that I have more than enough problems , don't they dare give me any thing else. But you have to know about a real risk don't you? Is there a good link to a relevant site?

ps do you know anything about the effects of anaesthetic on the thyroid gland? Am I in the right department for that, I'm new here.

jimh111 profile image
jimh111 in reply to

I came across the cancer risk and posted about it here healthunlocked.com/thyroidu... . Bear in mind these are relative risks and not absolute risk. I used to think levothyroxine monotherapy was fine for those (many) who got along with it but my view now is that all patients should be given a little T3 so that they can achieve euthyroidism without needing to have highest fT4 levels. It will be a long battle to persuade doctors as thentend to follow their preferences rather than evidence.

in reply to jimh111

Thanks Jim. My chap did mention T3 last visit, as a possibility and looking at a long picture. We aim to get me more balanced as well as the thyroid. I've had to climb from 150to 200 over a year, and also had an 'annus horribilis' with other factors. I'll copy that link on cancer and digest it. At the moment I am expecting to be called for a reverse shoulder replacement. Hence the anaesthetic query. I won't manage anything else.

Klenke profile image
Klenke

Don’t even think about going down that road. It will be worse than not having any medication . Thyroid is very sensitive. It basically controls your body rhythms. You need professional advice blood tests etc. please don’t.

in reply to Klenke

I assume you mean T3 and have had bad experiences. No, I wouldn't dream of going anywhere without proper professional discussion. not on here. Thank you.

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