It's me again and sorry for pestering you nice folk again, but I really don't know what to do.
I am feeling horrible - my last results weren't great - see my profile but my doctor refuses point blank to up my Levothyroxine (I am only on 50 mg) or to refer me to the Endo. Getting an appointment is an nightmare and you have to deal with the GP over the phone. That way the doctor can't even see that I look tired. I had been Gluten Free for a while but just got weary of preparing a separate meal for myself as I have just been so tired. I am attempting it again this week - I have re-started so many times!
Now I'm beginning to wonder am I depressed and should I just ask the doctor to put me on antidepressants. I do feel low and normally if I felt like this I could pull myself up out of it, but this time I feel like I am just going in deeper! The tiredness is getting to me too plus I waken too early in the morning and can't get back to sleep which doesn't help me either. Then I have to go to work - I am 61 and wish I could just retire but unfortunately not - the bills need paid and my husband doesn't earn much so my income is needed.
I have some spare Levothyroxine - should I just up the dose myself a bit and see if it helps. I just don't want to feel like this any more. I don't have the money to go private. Would T3 work if I were to give it a go -and if so where do I buy such a thing and is it really safe - doing things like this scares me.
Any advice most welcome.
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Sunflower535
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you have Hashimoto's and are struggling with conversion of T4 into T3 -
T3 is the active hormone needed by every cell in your body - and when you are too exhausted to carry on with your normal life style you will be upset and depressed as it's as though you are slowly being ' rubbed out ' -
with reduced energy, your psychological, mental, emotional and spiritual well being will also be down regulated as the brain also needs a large proportion of T3 - to keep you feeling well.
Is there another doctor you can see ?
Do you have the Thyroid Uk recommended list of thyroid specialists and endos - both NHS and Private - just email admin @ thyroiduk.org - if not - as I think your next step is to try and get a prescription for T3 - Liothyronine alongside possibly a slightly reduced dose of T4.
Obtaining T3 on the NHS has become something of a postcode lottery -
If you go into openprescribing.net you can see how supportive your surgery is compared to others in your catchment area - just enter Liothyronine as the drug :
You can also see by ICB areas where this post code lottery prescribing problem with T3 still exists - in comparison to other areas - but unfortunately there is no way of knowing how ' new patients ' are treated - but it's a start.
Many forum members have been forced into self medicating T3 as they live in what seems to be a T3 desert.
No worries - maybe start a new post asking for forum members to send you Private Messages recommending a doctor in N Ireland -
and / or - if anyone can recommend a supplier of T3 thyroid hormone replacement :
Please then check any suppliers with Admin - before entering into any transaction :
Your post will be closed - as replies will be by PM's and hopefully your Chat icon will light up with replies - which are private messages and only able to be read by you and the other person offering to help.
Can you go back to the endo who originally diagnosed you ?
Is there another surgery that might be more able to understand what they need to do to help you ?
To address T3 there are basica.ly 3 routes to getnit.
1. Go through an NHS Endo, GP's cant inititate T3 it has to be done via an Endo who agrees you have clinical need then your GP should take over the prescribing. Normally you would have a trial to see if it helps.
Obviously getting to see an Endo this way can be problematic, as you've found out. And there are long waiting times. But this is the most orthodox and cheapest route.
2. Go private, either a private Endo or GP, or other prescriber like a pharmacist. Thyroid UK hold a list of T3 friendly Endos. Or ask on the forum for recommendations. This is obviously the most expensive option.
As you will be responsible for consultation costs and private prescriptions. But it is usually pretty quick. And you have got the reassurance of being under medical supervision and someone telling you what to do.
3. Thirdly you can self source T3. Its not illegal to buy meds for private use. Its much cheaper than going private and you can titrate your dose up and down and please yourself. You aren' t at the mercy of a TSH obsessed doctor ( which it sounds as though you have experience of).
However it can be nerve wracking dosing yourself, although we have lots of experience of it on the forum. And you are at the mercy of supply issues and of finding a reliable source. But it is much cheaper than going private.
So that is how you go about getting T3 but I wouldnt entertain it until I'd been on a full replacement dose of Levo, which you are not. 50mcg is only the starting dose and you sound as though your GP is very ignorant about thyroid. Adding T3 is something of a last resort, once we've tried and given Levo a good go.
You need to get more Levo, either from a GP, or you can buy your own. Can you try a different GP in the practice?
Thank you for your reply. The whole thing gets to me - one person tells me to get T3, another person tells me to get more Levothyroxine - online places I have researched tells me to take Iodine - On here I am told not to take Iodine. I don't know what to listen to anymore. It's all so confusing. I am not getting at you as you have been so kind to reply, but I just feel overwhelmed with everything at the minute. It could take me a week to get through to the GP Practice as they only open their lines for about an hour each day. When you do get through you have to take whatever GP they give you. You talk, they listen and tell you the same thing time and time again. They say your bloods are normal, even though they aren't. The Endo that I was referred to the last time (whom I never actually saw) does not agree with T3 being prescribed so it wouldn't matter if I got to see him or not. If it hadn't of been for the Covid Vaccine I don't think I would be where I am today. I had been borderline underactive for 10 years and it wasn't until I took the vaccine that my health deteriorated, the vaccine seemed to do something immediately to my immune system.
Sorry for the rant. I just don't know what to do for the best anymore!
From memory I think your T3 was around 22% with your T4 at around 90% through the ranges - a month ago - showing very poor conversion -
T4 - Levothyroxine is iodine in tablet form and once diagnosed hypothyroid said to be the easiest, more manageable treatment option.
With Hashimoto's there can be absorption / stomach issues, and it's suggested to also get checked of other AI diseases that tend to also run alongside Hashimoto's namely celiac disease and pernicious anemia - though guessing your doctor not offered any tsting of these ?
I have read articles detailing the increased incidence of AI disease since Covid vaccines but don't expect anyone to acknowledge your gut feelings - and we just need to move on as best we can.
Sending several hugs - you're not wrong and you can come back from this but do need a bit of medical help and support or DI Yourself -
I have had gut issues in the past - problems with indigestion etc. I had an endoscope done and they did a biopsy at that time for Coeliac disease, but it came back negative. I refused to take medication and through diet have eliminated the things that seem to make me worse - oranges/tomatoes/fizzy water etc. Since doing this I feel okay but maybe there is still issues in my gut that are causing me not to convert properly.
So if Levothyroxine is iodine, would it not be good for me to take iodine along with the current Levothyroxine prescription to boost it up at bit, since my GP won't give me an increase. Sorry if I sound stupid!
So yes, I popped back on to say that in order to know if with gluten intolerance etc - a very common issue - you need to stay eating what you normally eat - until after being tested -
and even if not - gluten seems to upset many people's digestion and absorption - though I think I read that you had stopped gluten anyway ?
Yes your T4 dose is low - and a starter dose - though your T4 blood test showed you almost over the range - so I don't think you need more T4 - it is in your blood stream circulating around but isn't converting into T3 -
So maybe the answer is adding in some T3 to re-balance these 2 vital hormones into around a 1/4 ratio T3/T4.
There are various reasons why people struggle converting T4 into T3 - down regulation can also be due to inflammation, antibodies, any physiological stress ( emotional or physical ) dieting, depression and ageing -
I think we covered the vitamins and minerals last month, others issues could be genetic and some people simply can't tolerate T4 and take T3 only - but you do need some support with all this - which should be through your NHS doctor.
Well you will get 3 different opinions from 3 different doctors lol. Opinions are like assholes, we all have one. Everyone has their own experiences and agendas to fall back on.
No I know what its like to be overwhelmed. I obviously dont know your latest blood tests but quickly scanning Penny's reply, with an FT4 at 90% and FT3 at 22% then that is awful conversion, and maybe more Levo isnt what you need. Your results are surprising for such a low dose of Levo.
But as we know there are lots of things that can influence conversion, poor gut health, malabsorption, stress, diet, low stomac acid, vitamin and mineral status, other hormones and other medications.
I think there's quite a lot of info out there on reputable sites that covid and in some cases the covid jab can disrupt thyroid function. In many cases its temporary, but it seems some people are very unlucky and it causes permanent damage.
It maybe that you had a predisposition to getting thyroid issues and the jab was the final push, or you were destined to get it anyway. We'll never know.
Vaccines are normally tested for years before release to check for side effects, both immediate and long term. But obviously with covid time was a luxury they couldn't afford.
My GP initially diagnosed me with ‘health anxiety’ and depression and suggested I saw a psychotherapist/offered me anti depressants.
Joining this forum helped me realise that my symptoms were related to being under medicated and like you, I also had poor conversion. I would consider starting a new post asking for an endo recommendation in your area, to discuss a trial of Liothyronine alongside Levothyroxine. Now I am on the correct dose of medication (ie combination treatment) both my mental and physical health have greatly improved.
So if Levothyroxine is iodine, would it not be good for me to take iodine along with the current Levothyroxine prescription to boost it up at bit, since my GP won't give me an increase. Sorry if I sound stupid!
You don't sound stupid, but absolutely not, no. I'm afraid pennyannie was a little misleading in her reply above. Levo isn't iodine, levo contains iodine. Not the same thing.
Iodine is one of the ingredients of thyroid hormone. 1 molecule of T4 contains four atoms of iodine, which is recycled in the body. So, i you are taking levo, you are already getting extra iodine than what you would usually get from your food, and are unlikely to need more. Especially as your thyroid won't be making much hormone these days, if any.
Iodine is not a magic elixir that will make your thyroid work better. It won't boost anything. But excess iodine can cause all sorts of problems. And it is actually anti-thyroid, and used to be used to treat Graves' before anti-thyroid drugs were developed.
So, best to stay away from iodine. It could very well make everything much worse - and I speak from experience here.
Iodine cannot replace levo. You need an increase in dose.
Is it thyroid or am I depressed!
Depression is a symptom, not a disease. And it is a major symptom of hypothyroidism. So, you more than likely are depressed, but it's not the depression causing your other symptoms, they are all caused by low T3. Antidepressants might help temporarily, but they are only a sticking plaster and won't address the main cause of your problems. And, they can be very difficult to come off. So, best avoided if at all possible. Especially as the solution is so simple: T3.
But doctors do not understand any of this. What's more, they don't even care. They would much rather prescribe a dangerous drug than a hormone because they are terrified of hormones. But hormones are very safe. T3 is not the monster they make it out to be. It is a naturally occurring hormone in healthy people. We are not healthy people, but doctors ignore that fact. We need to take exogenous hormone to keep us well - to keep us alive! So, in answer to your question: is it safe? Yes, it is. I take 75 mcg T3 mono-therapy. That is a high dose, admittedly, but it's the dose I need. If you're also taking levo, you certainly wouldn't need to take that much. But it's not about how much you take, it's about how much you absorb. And I have a problem absorbing at the cellular level. But it's still perfectly safe.
Thank You. Going to contact the GP and insist that I'm referred to the Endo and then cross the bridge with the Endo when and if I get that length. Thanks for your help and encouragement. I will keep you updated.
Since you are only on 50mcg, a starter dose, you should have been tested after 6 weeks and dose increased to 75mcg T4 but your FT4 is already getting too high....so that should ring alarm bells for investigation.
Your GP is an idiot and his ignorance is making you unwell....you need T3 but I suspect the very idea terrifies him!
T3 isn't some scary drug it's an essential hormone that the every cell in the body depends on.....if it's low we suffer.
Despite what some medics think the body does not have a self regulatory system that always cleverly balances our hormone levels. Some of us need help by way of replacement thyroid hormones because, for some reason - often poor T4 to T3 conversion - the thyroid is unable to produce enough.
I have a rare thyroid condition and I need a huge dose of T3-only to get enough into my cells to allow my body to function. If I miss one dose I start to fade! I guess that would have your GP scared out of his wits and running for the hills....but that is what keeps me alive.
I'm saying this only to emphasise the importance of adequate T3.
Unlike, for example washing machines, we do not come of a production line all calibrated to the same specifications/set points*9....engineers understand this but medics seem to expect that we humans are similarly produced and can be fitted into neat check boxes.
Well, we don't... we are humans not washing machines and as such are all uniquely and splendidly different so we all need different treatments. Doctors are not engineers and they should understand this.....why many of them do not beats me.
You clearly need help but your GP isn't even looking at you....the first thing the old GPs did as we walked through the surgery door! Their current diagnosis is wrong therefore your much deserved treatment is wrong.
Would he refuse a drink of water to a badly dehydrated patient or insulin to a diabetic, before they collapsed and fell very ill. Adequate thyroid hormone is just as important.
Ask him if he is prepared to withold T3 until you collapse.....lay it on thick!!
Ask him again to refer you to an endo before this happens and he is responsible for this.
Speak to your Practice Manager who is responsible for the function of the Practice......if patients are not being given adequate readily available treatment with improvement to their health management needs to know and action taken
This is your health and you are going to have to politely fight the people who are charged with your health care in order to get better.
There is a treatment and they should be making sure you receive it....it's their job!!
Sorry, I'm ranting but we need to stand up against this ignorance which is spoiling/ ruining lives.
Go back, take your husband with you ( I often do) and with a list of all you wish to say and ask as an aide memoir, politely insist on better care....before he has to deal with your further deteriorating health.
Sometimes we have to pull up our big girl pants and show them we mean business....they are only flawed human beings after all!!
No wonder you feel tired and depressed these are text book examples of wrongly treated hypothyroidism....it's a straightforward treatment and you should not have to seek out private health.
Thank you. I'm going to sit down tonight and collate all my facts and write a letter to the doctor I last spoke to. I think if it's in writing it can't be ignored. A phone call will take days and they never really listen anyway. Thanks for your advice. I feel I know more now and am ready for battle.
I've often written letters or emails to my practice. It helps get everything down precisely, its too easy to get flustered on the phone and forget things. Plus things written down are in black and white, there's no he said, she said. And they should attach a copy onto your notes so its there for all to see.
I would advise being polite, but assertive. This issue is affecting your life, your health, your job. You are not depressed or anxious, you dont want to be fobbed off as a hypochondriac or offered antidepressants or CBT. You have a medical issue that is not being treated optimally and you need them to do something about it.
My GP went months refusing to increase mine. Getting a medichecks test with doctors comments helped them agree that trial it... And with pestering keep it.
"Normal" is not a medical term and means very little, they may argue that it means "in range" but that doesn't mean anything significant either!
Being "in range" is not good enough, it's not personal to your needs whereas finding the exact point within the range where symptoms are resolved is personal.....and where your labs should be sitting.
"In range" is a lazy inaccurate conclusion.
Some years ago I wrote a detailed document explaining why, I need a supraphysiological dose of T3 and how I discovered that to be the answer to decades of poor health.....my GP put it in my medical notes
I self medicate because it's the only way to get enough T3....but nobody interfers or insists I have regular tests. It's my responsibility and it's crazy that my life depends on self sourcing my medication but sadly that's 21st century thyroid care
So, yes...write a very concise, polite but firm explanation as to why you need more T4. It's basic treatment made to sound like something from a witch's cauldron!
....and ask them to give you an increase as a trial.
They like "trial" it makes them feel in charge!!
Medics are just ordinary flawed human beings like the rest of us....not superior beings.
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