Hi, seen the Endo yesterday and he wont give me Levo as doesn't believe im Hypo...
If I carry on feeling rubbish im gonna have to self-medicate I think (that or live on Redbull!!).
What are you stories and experiences and advice re self-medication of Levo please....
Hey Joanne!
I started self medicating on T3 as I couldn't cope on T4. After 6 months and a new Endo I have a prescription !! I had heaps of energy & she agreed that in 'my' case it was the better option!! I still have bad days but that could be other things...don't you hate having to self medicate?! I hate it too so unfair! Best of luck 
This will be quite rare I suspect...
Most people who feel that they have no choice but to self-treat will be on T3 or NDT...
Is there no way that you could see a different Endo/GP or one of the Private GPs on our list..?
If you are seriously considering going down this route, please make sure that you are still being monitored by some sort of health practitioner.
L
x
private GP? can you give me the link. i think i really need to see a private gp or private endo.
Where will I find the private list of G P's please. I would be interested in one in the Manchester area.
Hi, im not going to yet, I am going to see how I feel over the coming weeks... maybe I will then consider paying to see someone on the list you kindly sent to me, if I do feel bad. x
I'm desperate to find someone private i live in Manchester area but can't find one. My tsh are up and down but in range 2.5, 2.7,3.98 2.9 then down to 1.9 also vitD 22.1 I am on 5 vitD a day for 10 weeks but can't control weight gain it has gone up by 2 stone in a matter of around 5 weeks which is also making me very depressed. Ask gp over and over can I go on a trial treatment for under active thyroid to see if it helps but he won't give in. So thinking unless I can find a private endo/doctor in my area I'm going to try self medicating but don't know where to get it from or how much I should try to see if my problems improve. I had another result to think it was igm 2.46 which was said to be raised. Help needed ASP ;(
i can completely understand your situation. these endos are useless.
i don't think i have a thyroid problem (although dr only ever tests TSH and that's always normal). in my case it's about my cortisol levels, not thyroid related as such. i am on and off anaemic, my B12 was deficient, my Vit D was deficient and a dr that specialises in B12 told me he wanted my cortisol levels tests. looking at the results he told me that my levels should be 600-700 at 9am in the morning not 199 nmol.
the reason i can understand your situation is that my levels are just above the bottom level of 185nmol (mine is now 195 nmol it dropped lower), i've had an SST test and my 30 min came back 545 at 540 i would have had treatment for secondary adrenal insufficiency. i had started self medicating and started feeling amazing after about 6 weeks, then i got the appointment through for the SST test so had to stop and went back to being a zombie again.
the endo then went and frightened me about self medicating and told me i could kill my adrenal glands off altogether and then it would be a really serious situation. i imagine that the endos could say something similar about the thyroid gland too.
it's scared me so i've stopped taking hydrocortisone and i'm just tired all the time, no energy, dropping asleep at the drop of the hat, breathless, dizzy and almost feinting at times. i used to run half marathons, 10ks and 5ks. i was really fit, healthy, thinner. now i can't run as i almost pass out. it's like my whole body shuts down. i just don't know what to do. do i take the hydrocortisone and self medicate? i'm in a really similar situation.
Hi Angel, I've done a lot of reading since I'm thinking most hypos either started with adrenal problems or get them together with thyroid problems. I'll post some good articles and there are some things you can do for yourself but cortisone on your own is not a good idea. Some say "don't use a shotgun approach for adrenals" either. You could shut down your own adrenal function. Are you saying the endo won't treat you because of that test result?
This article from STTM about adrenals talks about a supplement to help with sleep issues which are a huge problem as you know. Sorry, I can't spell it but I think it is SE (shortened). It's in one of the links in the second article "Adrenals Wreak Havoc".
stopthethyroidmadness.com/s...
For me I just want to spend the day sleeping. My levels are not quite low enough. I need to drop from 195 nmol to 185 nmol or less to be looked at to be treated seriously. I've taken liquorice root but it still doesn't raise it enough. In hydro I had so much more energy and felt normal again. I lost weight, slept well and my bp normalised.
Yes, I understand. You want your adrenals to heal and produce on its own and that is what appropriate sleep patterns, for one, will do. If you haven't read a lot, there is some excellent information that will help you to understand. It takes a long time unfortunately and stress is a huge deficit for adrenals. There are some binaural cd's that help relieve stress.
stopthethyroidmadness.com/a...
drrind.com/therapies/Adrena...
I've done a lot of reading about SAI and I feel I do fall into this category. I have never used steroids or steroid creams in the past which, in long term use, would cause drug induced SAI. This leads me to thinking the my low cortisol must be linked to something else. I did have a high prolactin level and was given an MRI to rule out hyperprolactinemia. Thereafter I was told I had PCOS. No further tests was done until I paid for a glucose tolerance test in the USA. Levels were such that I was put in metformin. Ice read several articles that link pcos to adrenal problems c
My dear Ukangell. My level of cortisol was below 25 nmol/l and I still DIDNT take hydrocortisone even when they wanted me too (I don't suffer from Addison's or secondary adrenal insufficiency just to be clear) Endo had no clue how to dose it properly and he wouldn't take under consideration how hydrocortisone interacts with my other medications. I didn't die without hydrocortisone, I am still here... Well it's all up to you, and it's your life and your health and your decision. Hydrocortisone is the last resort. I wouldn't jump on hydrocortisone train unless you are diagnosed with adrenal insufficiency or adissons', then you would need replacement for life under Endo supervision.
Hi, sorry to hear this, how awful!. Funny enough he did test my adrenal glands - I had a blood test, then an injection and then 30 mins later another blood test. I will get that result in a few days.... I doubt it will come up positive though.. sure mines thyroid.. but who knows. At least he did that I guess...
Its all to do with steroid function isn't it? not too clued up on the adrenal/pituarity gland, only the thyroid.
Can you not see someone else? x
is it always the case that with an adrenal problem you have probs sleeping then? I sleep like a log!! too much.. right though..
i sleep like a log too. 9am to 7.30 if i can get away with it when the kids are not at school. today i've also had a sleep for an hour at 12.30 then again at 3.30pm. still tired.
I sleep like that too. Up all hours if the night, best kip is from seven thirty to nine thirty, when I can.
that's an SST test. primary is adrenal gland related (addissons). secondary is pituarity related. hypothyroid and adrenals are linked.
ok, thanks, So what symptoms would you have with an adrenal prob? same as HYPO? x
thanks waiting for the results, will post them when I get them x
Hi
Sorry you are feeling so bad, I cannot offer any advice but just wanted to say my daughter has really poor adrenal function, at the SST test which was at 10.00 am her level was 220 - 30 mins later 450
Consultant just said she does not have Addison's, I said yes but she does have adrenal fatigue, he said yes but we do not treat that.
She went to see a Nutritionist who did the adrenal saliva test and it came back as one stage up from Addison's. She has prescribed her Adreanal dynamite which she has been taking for nearly a month but unfortunately there is no improvement. She does also have other things going on though such as a Candida problem and has to try and get that sorted plus she has celiac disease but does stick to a strict gluten free diet.
She is getting to the point like you at looking at self treating with hydrocortisone but I am worried if not done properly with stop her adrenals working altogether.
She has all the symptoms you have and has been unwell for about 5 years.
I know Dr Chandy has a adrenal protocol on the B12 deficiency website if you want to look at how he treats adrenals, I think my daughter will follow this if she self treats.
If you would like to discuss anything further do not hesitate to PM me.
Best wishes browny
i've met with dr chandy. he is the one who asked for my cortisol to be tested and he's told me i've got SAI. he told me to get a referral to a couple of endos but my drs won't and they won't increase my B12 to monthly.
one thing i don't get is can TSH be ok but T3 and T4 not be ok? Drs only ever test my TSH.
my TSH, when tested is:- 2.69 (1999), 2.4, 2.69, 1.32, 1.27, 2.15 (2014)
yes, my TSH was within the normal range like yours are - although edging towards the top end at 2.69 (HYPO) but when I got her to test my T3 and T4 they were bottom of the range, which indicates HYPO. so, your tsh can seem normal when your T3 or T4 isn't..
I think there a few different causes for this...
When I asked the Endo last week why the lab hadn't repeated my T3 and T4 as requested (and I said is it coz of the money?) he replied.. no theres no point testing T3 in HYPO.....
seems he was talking rubbish there.
our range for TSH is 0.2-4.0 mU/L. such a massive range 
Yes, ours is similar but when you narrow it down to what some endo think the range should be your TSH and mine is top end. but yeah, they wont do anything whilst its mid range. only reason my gp let me try the levo 25mcg was coz my T4 was borderline HYPO....
must ask for T4 and T3 to be tested.
i've asked for a T3 test and my dr refused. told me it costs too much and also that the lab wouldn't test it anyway even if it was requested.
the american association of endocrinology corrected the range for 0.3 - 3.0 some years ago.
Thanks Browny and sorry about your daughter, awful. I am awaiting the results... x
I'm sorry you feel so ill. Don't self medicate. Make a list of your symptoms, Go to Thyroid UK on the web and fill in the self diagnosis form. There are lots of pieces of information there. I know how you feel because I've been there, but could it be something else like Post Viral syndrome (a more serious name for ME)? I can't believe an endocrinologist wouldn't believe in Hypothyroidism. Are you in the States? We can't get Levothyroxine here unless we have a prescription for it. Try the approach "Now you've proved it isn't Hypothyroidism..." he's bound to contradict but ask why you feel so exhausted all the time and get him to find out why. Make a note of sleep patterns, Sorry, with this you have to persevere until you get taken seriously. I hope this helps.
I tried all of this and I'm sorry to say it hasn't worked at all, with my GP or endo. So I feel that I have had no choice.
Thanks im not going to yet. I have already made a list of symptoms from the thyroid UK site and I showed him it! all he focused on was the tiredness and nothing else! I don't think its ME as when I tried Levo 25mcg a few months ago I felt much much better! He did a test for my adrenals, waiting for that result. I sleep very well. but thanks. Im in the UK. x
I self medicate on Armour as my GP will no prescribe it. Cannot use Levo it makes me have too many health problems.
After 16 years as a grouchy blimp on levo I am about to start self-medicating with Cytomel. Plan is to go back to my gp in a few months and confront her, hopefully she will get the message then.
same with me
Have you had the Genova urine test? For T3, T4 and reverse T3 blood.
To give you some idea that's what your treating.
I was diagnosed in 1980 with Idiopathic low T3 syndrome.
The NHS endo gave me T3 after 2 or 3 months you get a rebound reaction. The original symptoms re-appear. I wrote to the doc some years later. He ignored me.
When I told him.
That a biochemist told me this.
The biochemist told me that they do the tests but the medical doctors make the decisions to treat or not. The biochemist is told to keep their nose out.
Jobs for the boy's.
Also increased or decreased cortisol can have an effect.
Along with prolactin.
They are very fond of using the words psychosomatic.
If stuff has shown up in the bloods they can ignore it and say its stress. If they don't understand or want to understand.
They are still in the same state now more than 20 yrs on.
I was treated for Lyme Disease
by my GP in 2005- 2007 my notes went missing between 2006-2009.
I was thrown out the practice because I complained about another GP in the practice using
biofeedback or radionics on me.
He had obvious links I found he practiced privately. It was on his own site that he was into environmental medicine.
I told my GP. He said he didn't care what this doctor was doing.
I was not to contact the practice.
I went on to find the next doc was
also using biofeedback.
I don't know who lost my notes.
There was a story cooked up.
By him to get rid of me. Even though I had had a conversation.
Where he said I must be very sensitive.
He used the police in fact they both used the police.
To frighten me because they can't break the link.
It's a type of some say low frequency radiation a lot of docs are using under the counter.
It's band by the FDA.
I said to them they stopped me earthing amongst other things.
And were intrusive.
Dr P. said" they would lose my notes". When I saw him a few weeks ago. I have spoken to other doctors. They clam up on me don't want to get involved.
Dr. K whose retired said the GMC
would do nothing.
It is not only private it's NHS you have to watch out for.
Dr Stephen Barrett of Quackwatch said report them to the GMC.
Lymedisease.org mensions the MRHA and FDA.
They are using wi fi on you and it's off scale. So it's only the sensitive (these are not low powered) but the Mod and Radiocommunications Agency would of stopped them at one time. One would of hoped.
They have been closed by the government.
It's all jobs for the boy's:
Though it's against the law it's
only breaking civil law not criminal.
As the government have removed
the people who up held the law.
and left Trading Standards and
one or two other bodies who will not lift a finger. The standards Healthcare commission (NHS ) as they were will do nothing.
All I can do is say too much electricity buggers up your thyroid.
So called experts think wi-fi is low powered. They and the government are breaking the law.
Who cares.
If you take them to court they can say they are they are expert and you are mad.. The Mod even though they know will ignore the situation.
All I hear is the government saying we are living too long.
The pensions going to run out.
Then they say children are playing with computers too long.
Their going to suffer from weight problems brought on by too much radiation from the computer and cancer. If they do more excersize then they are still running around in smog outside.
Be that radiation and particulate.
Hi. Joannec123. I have hypo and was on 125mg (5 days a week) 120mg (2days a week) levothyroxine - my thyroid has shrivelled up and probably does not function at all so I make no (or virtually no) thyroxine. I was ill for a long time prior to diagnosis. I had a thyroid function test 10 years previous because I had noticeable symptoms, but it came back normal. I might have been saved some considerable suffering had it been treated earlier. I can only speak as someone who is well down the line of hypo. I have never felt right on levothyroxine so have started reducing the levo and self medicating on a small amount of Natural Dessicated Thyroid to balance the dose. It feels better already. You will get more relevant replies from people who are in the earlier a stages of the disease that will help you choose a course of action to suit. Good luck!
I've been forced into self treatment, but have gone with NDT. Now 5 weeks in and almost back to normal after being very ill since Christmas.
Week two and I feel pretty good. Still on just one pill in the a.m.
Hiya. Don't think we are aloud to discuss self medicating but I can recommend someone in Wales who will see you privately.
Not allowed to discuss self medicating? Yes we are but not allowed to say where to get meds from.
Fine to discuss...
We like it when people talk about it. If people can share their own experiences and explain what worked/didn't work for them, it helps other people to explore their own health situation in more depth!
L
x
Re self medicating : Certainly has it's dangers and a good open minded doctor is the ideal ! However I really fail to see how a doctor can make life effecting decisions on peoples lives in a fifteen minute consultation. " They " are presented as almost godlike but the reality is most are barely competent !!! Self medicating must be done with great care but if it's the only option then just keep good notes in a daily diary. Record pulse, blood pressure, temp and a record of how you look and feel. Increase dose slowly and be vigilant. Make sure you declare meds if you are being prescribed anything else in case they interact. Good Luck.
NB: Worked for me !!
Worked for me too!
Thanks, good advice
Hi,
I self medicate, but I was diagnosed hypo about 15 years ago. I am only on T4 and when I get typical hypo symptoms, I raise my dose. Currently just started on 200mcg, so I'll see how I do ion that and if I get hyper symptoms I'll know I've gone too high and I'll lower it back down again. I do get a little scared sometimes of upping my dose myself, as I had an argument a few years ago, with a 'more than my jobs worth' doctor, who basically said I was killing myself and I am putting myself at a risk of a heart attack or stroke and even wanted me to sign a disclaimer. He basically wanted me to lower my dose of levo, because all's he was looking at was the TSH test and not treating my symptoms. I could barely keep my eyes open at the time and had gone from walking the dog, cleaning my car and training (running/weights) all in the space of one day, to having to choose one or the other and he wanted me to lower my levo even more than he had already hoodwinked me into doing 3 weeks earlier! I know listen to my own body and do try to be careful.
Also, I did try self medicating on the T3 a couple of months ago, but after about a week, I felt dreadful! Almost like I'd got the flu coming, so I stopped taking it for a few days and felt ok again. Tried again a few weeks later, thinking maybe I did have a bug, but nope, same symptoms......I have read though that you are meant to lower your T4 first and I didn't, so maybe that didn't help....
I do tend to feel reasonably well on just the T4, maybe I am one of the lucky ones.
Good luck!
I have read somewhere that before the blasted TSH test the average dose was the equivalent of at least 200mcg and now it is nearer 100-125, so it's no wonder people feel worse.
I wonder if a lot more people would do well on Levo if they were simply given enough of it?
HarryE you're right. The least they could do - considering they never want to give you anything different - is to allow you to try enough levo to help you.
My endo suggested that I was on too little levo. Of course I had had to argue with my gp to get her to give me the tiny dose I started on (25mcg) and even after it had been raised to 50, it was the endo's registrar who told me to reduce it back down to 25. If you're not sharpening your claws you get nowhere.
Endo said I'd feel better when I'd been on enough levo for long enough and eventually he had me on 150 - test results looked perfect (everything was where it should be), but then he insisted I stay there even after six months, a year, when I was still fat and exhausted. I had to go to a different (private) doc to get t3, and when I went back to him and explained what had happened he acted like the t3 had been his idea all along.
JillOliver there are so many docs (not enough, but the reasonable ones) who will suggest that we reduce or raise the dose according to how we feel. Most of them probably don't practice in the UK(!) but I know there are others here who are given some leeway with meds. As HarryE says, doses used to be higher. Who is wrong, those who want us to be well (which includes feeling well not just ticking boxes with tests) or those who want to bring us within arbitrary test ranges?
So you're not wrong, your actions aren't wrong, you just have the wrong doc.
I suspect that with the extremely restrictive regime in the UK, docs rarely see anyone who is overmedicated, so how do they know how it can harm you, or how high is too high (tests aside) and for how long? And yet they will refuse to treat someone who is hyper and symptomatic but whose test results (on the day of sampling) are just within range - ? What happens with their hearts, bones, etc?
There are docs - they aren't outlaws or crazies but they may not practice here in the UK - who will medicate you to the top of the range until you feel well then reduce slowly if/when you feel a bit hyper, rather than keeping you ill at the bottom of the range and making you fight tooth and nail for tiny increases. So I ask who is right and who is wrong?
As far as I understand it, the risks of over medication would only be realistic if you carried on taking far too much for a long period of time, and l think you would feel so rough that you wouldn't want to do that anyway. And to be frank, I felt so utterly dreadful that I would have accepted any risk. The prospect of living the rest of my life in that state was completely unacceptable, at some points I really thought I would have been better off dead.
There are some people on this forum (I can think of two) who have had heart ramifications from overmedicating. I think in the scheme of things they are in the very tiny minority and I believe (though could be wrong) that they were both overmedicated under the care of a doctor (so apparently doctor-guided treatment is not necessarily safe either).
Idk, I felt great when I was supposedly over the t3 range (though it is hard to tell how to interpret tests when you're on t3 as there is more fluctuation than with t4). I had some minor symptoms (diarrhoea, some adrenalised behaviour) but felt strong and had stamina. It all went t*ts up anyway before I had a chance to reduce meds and haven't felt well since on any dose, higher or lower.
Would I take more meds if I could feel that way again? Hell yes.
Yes I think i feel safer without a doctor anywhere near me at the moment, given how hopeless they have been. 
Thanks, Hi, I tried a small amount of Levo for a few months and felt better... now im not as bad as originally but still not 100% so wonder if the small dose perked up my thyroid....
Yes I am, started about 18 months ago as not quite hypo enough for nhs treatment although clearly symptomstic and a family history of auto immune disease and hypothyroid.
Had a 3 month break from levo and blood test confirmed levels had plummeted again and symtoms back so back on it and feeling better. Currently considering ndt to see if this imprives symptoms further as weight is still an issue along with muscle pains.
I've been self medicating for about two months. I had a thyroid disorder as a child, but I don't know what it was exactly, no way to find out more as records have gone, but I did have a course of tablets and I remember losing weight.
Forty years on and I was gaining weight after being fairly stable, getting increasingly tired etc. This got worse over the next 10 years. I could tick all the boxes for hypothyroid symptoms, but they are all slight or intermittent. Just not quite enough to say definitively "I'm hypothyroid", but I was still feeling awful most of the time.
I had my bloods done, they were OK. My GP dismissed it, said (sympathetically) that my tiredness was due to depression and prescribed Sertraline.
Now a year later I decided I'd had enough, read as much as I could, including a lot of info and posts on here, and thought I would try some NDT. Bought some off eBay, but before it arrived I also found some Eltroxin being sold in Thailand. "I'll give it a go" I thought. Big risk, but for £6 and £6 postage it seemed like a good idea.
It arrived as promised, and I planned to cut the 100mcg tablets into 4 to start with a low dose for the first 2 weeks. I failed to cut the first one cleanly and thought I may as well just take the whole one, what harm can it do? WRONG! I was fine for 12 hours then was hit by dizziness and nausea for another 24.
I discovered that using nail clippers made it easy to cut the tablets in half so when I felt better I started talking 50mcg a day. After a week I felt great. Better than I can remember. It lasted for about 4 days then I started slipping back. I increased my dose, but to no avail. I started the NDT, still no change.
I had an annual blood test, part of it was for thyroid function. It was OK. I couldn't bring myself to tell the GP what I was doing.
I've stopped the Eltroxin for a while, just taking NDT, and I have been feeling a bit better, so maybe the rebound effect is wearing off, I'll just continue to experiment until I get the balance right.
I have to stress - I have been doing this for my own curiosity, I DO NOT recommend anyone to do the same. Please see your GP before trying anything. If you decide to go on a different path, I wish you all the best.
hi, I have a diagnosis and take levothyroxine, but was never well until I got some cytomel (T3) from mexico, I am so much better, my GP knows this and understands as his practice wouldn't allow him to prescribe T3.
my son who is 43, had the same symptoms and was really in a mess, but his bloods were just in range, he now takes the T3 (a small dose) and is so much better, its ok to say "do not self medicate", and tell your doctor , but after years of suffering, sometimes you just have to help yourself.
obviously, get as well informed as you can be, and this site has taught me so much and helped loads,
good luck.
It's not rocket science and a lot better than being disabled or dead
Dont waste time - do it!
Has this Endo done any blood tests for you? If so, do post the results. There are clever people on here (not me!) who can interpret what they mean.
Vitamin and mineral deficiencies can make one's thyroid function less well. Exhausted Adrenal glands will too. Make sure your vits and mins are tip top and your Adrenals healthy before you take any thyroid meds. If you want to just jump in with that (getting tests for it all might be difficult - certainly my doc won't do any of them) it is unlikely that you could do yourself any harm at all if your levels are already good. Adrenal health is crucial. The crucial vits and mins are:
B12 (methylcobalomine is the right one isn't it? check me on this folks)
folic acid
iron
selenium
Vit D
Calcium and Vit C
there may be a couple of others. (I put all this information in a safe place, but can't find it - sorry!) Help, please, folks?
I gave up completely with the NHS dealing with my thyroid 2.5 years ago. I use Thyroid S (a type of NDT). I had to attend to the matters I mention above before I could tolerate a helpful dose.
you can get a saliva test in the UK on the NHS. there's a form you download from. it was posted in another thread here.
Listen carefully please..You may need to self medicate until you find a good doctor. Here are 2 links..1, please get familiar with NDT, (natural desiccated thyroid) and don't use Levo anyway. 2, you can order NDT from Thailand without a prescription if you must. You can get your labs prescribed from any doctor even if hes got no clue. You will need Free T3, Free T4 (Make sure its FREE T3 &T4) as well as the usual panel. You are also going to have to order your own 24 hour saliva adrenal kit. That is important so you know your adrenal condition, because if that's messed up that's where you need to start. Then use the results to help yourself. PM me if you like for FB groups who will help you. This is the only way you are going to be able to fix your problem. But you will need a doctor that understands this stuff..Thanks, Blake
stopthethyroidmadness.com/n...
Response edited by admin due to repeated ignoring of TUK guidelines.
Those who do not have a thyroid can only take Levothyroxine and not T3. So they have to adjust the dose according to the cancer cells cos they want to keep the tsh as low as possible. When I was on 100mg thyroxine I was feeling fine and when they put me on 125mg I started feeling unwell. Now after a year they have slowly reduce my dose back to 100mg and I feel ok again. With cancer it's different. Goodluk
Agreed that with cancer it is different - i.e. suppressed TSH.
But I do not understand why someone without a thyroid cannot take T3. Could you please explain so that we understand what you are saying and why?
Thanks.
Rod
Hi the reason people with no thyroid cannot take t3 is because they do a lot better on t4 than t3. T3 is only for people with thyroid related problems not for someone who does not have a thyroid. I did look it up and asked my doctor.
I find that a rather odd suggestion!
On the basis that we often really don't know why some people do better on T3 than T4 - nor why others do better on T4 than T3 - I simply cannot believe that it is lack of a thyroid.
For example, someone with Resistance to Thyroid Hormone will need T3 almost certainly regardless of whether they have a thyroid.
Rod
Hi, Very frustrating situation. have you posted any results on here yet? Unless I have missed them. Please don't self medicate anything unless you have SOME indication that you are right. Have bloods been done to pinpoint your condition? What if you complicate and make things worse? With Thyroid symptoms you need to persevere but know exactly what you are supposed to be treating. What about iron levels? B12? VitD? etc......
Looking Forward to your response.... and please don't take Red Bull! Not going to help with anything and will make you worse lol. 
I was thinking of self-medicating as my TSH is so-called "normal" so the doctor doesn't want to know. I'm symptomatic of hypothyroidism. I was first diagnoses with ME/CFS in 1999 and fibromyalgia around 8 years ago, so I've been ill for a very long time.
I started, with the help of Dr P's book, solely on the Nutri supplements (along with other supplements such as iron, folate, vit d, etc) but I haven't noticed much of a change. I then started to wonder if NDT was the answer - but I'm a bit scared to try that on my own (though I've had some very helpful and supportive PMs from some of you here - you know who you are! ). So I'm happy to say that I now have an appointment with Dr P himself - next month! I'm hoping he can set me on the path to being able to help myself feel better. That might mean NDT - I don't know yet until I see him. I'd much rather take the natural stuff than synthetic levo - I think that will be much better for me.
Good luck to all of you who are self-medicating! It isn't right that we should be put in this position - the doctors should help - but it's great that we have a place here where very knowledgeable people will help each other like this.
Hi i am prescribed 125 micro of levo, after a tt in august, still had a lot of hypo symptoms, in november when i saw the endo he told me to wear an extra jumper if cold and have a nap in the afternoons if tired, as my blood results were all within range i do not need anymore levo,i self medicated by another 25 micro and now feeling much better just a few lingering symptoms but i can live with them, its so bad that the medical profession will not listen to our symptoms and treat us using only blood test results, making so many of us take these measures of self medicating.
Hi Tatty10, interesting to red that you have increased your meds by another 25mcg. How do you do this without the doctor agreeing to write an increased prescription? I too am a very frustrated patient - but would like to tread carefully and can't afford to finance meds myself. Yes - the advice given from docs sometimes can be very condescending!
Thanks for all your replies, very interesting reading One other thing he said was that T3 was irrelevant to HYPO? only a good test for HYPER? said no point looking at it, only the TSH and the T4....
He was just an idiot masquerading as an endocrinologist then.
seems like it! grrr
I was told that too!
Could you be B12c deficient?
had B12 tested and GP said all fine but posted it here and people said it was low, so I, now take B12 everyday slow release..
I think it's similar. Tiredness, breathlessness, dizziness, that kind if thing. I've got a b12 deficiency too and symptoms are similar for that too.
oh right, what does the SST stand for?
Hi i buy 3 months of 25 micro of levo for 1euro and 40 cents from any pharmacy in spain so cheap and so easy to obtain
Wow that is brilliant to be able to buy it yourself! wish we could here in UK
I self medicated with some support from my GP for a short. It didn't really work for me. Cost of buying levo online was extortionate and it wasn't working for me. Now seeing doctor privately from list and this seems to be going well and not costing much more that online drugs
if your gp agreed you could self-medicate, why didn't she just give you levo on script?
Sst is Short synacthen test:
If you decide to do this, go low and slow, and do your research. There are lots of articles out there about meds and dosing. And do NOT believe anyone who tells you that over the counter products do not contain meaningful amounts of thyroid hormones! Some of them do. I normalized my free t4 to mid-range, and dropped my TSH to 0.01 taking widely available OTC supplements
Hello all.
I seff-medicate. I was not diagnosed for 4 years so I was fed up with docs not knowing a thing. So I started reading to learn about hypo, found a place where I don't need a prescription and finally after being under medicated for a year I started self medicating and I got a lot better. My TSH right now is at 0.03 and I know that that is right. I take Armour Thyroid (natural dessicated hormone from pigs). Poor pigs, I love them.
Help with self medication please
