Can anyone help?... I'm new to this and don't know where to go from here.
I have been hypothyroid for around 10 years. Presently taking 100mg Levothyroxine.
Whilst taking Levothyroxine all those years, I still have symptoms of fatigue, can't think clearly, no motivation etc.
At present I am off sick with fatigue and stress. This time I feel much worse. I am so exhausted that I cannot stand for long at times, cannot go up the stairs without aching legs and breaking into a sweat. Can't remember things, can't sleep well, no appetite, irritable, etc.
I've been so taken back by my symptoms that I've visited the doctor, homeopath and an osteopath!
Went to see the doctor today to discuss my blood tests that were done last week in response to my sudden severe fatigue!
TSH 4.25 (0.3 - 5.5)
FT3 not tested
FT4 22.7 (12 - 22)
(Last November was TSH 7.4, FT3 3.7, FT4 19)
The doctor was not interested in my symptoms, saying they could be anything. I said that I'm on Levothyroxine but still have all these symptoms. He said my results are normal!
I then pushed him to refer me to an endocrinologist, he said he would but I'm wasting my time as he would see your results are normal!...?
I don't understand... He gave me another blood test, no advice on how I could feel better... Nothing!
Where do I go from here?...
Anyone...
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Naz67
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My friend its an awful experience. Im 47 & have been on 250mg a day for years and my stupid gp stopped my repeat prescription because I was late in my 6 monthly blood test. I gave my blood sample and the gp didn't get back to me with any concerns. I simply forgot to get my repeat prescription which the gp didn't release after blocking it and I was off the tablet for 8 weeks. I started feeling strange after about 5/6 weeks then collapsed during a massive panic attack during which I was convinced I would die of a heart attack. It was a horrific experience for myself& my family & its happened thrice in the last month since my stupid gp has been trying to get my dose right again. Anyway after my last collapse I went to A&E as I was sick of it all and I met a lovey Turkish doctr who took great concern. He said a gp must refer you to an endocrinologist if your dose exceeds 100mg as it becomes a more serious matter & an endocrinologist has studied this for 5 years. So please do this and I'm sure you'll be sorted out.
Tolla36, I am really shocked that your GP blocked your medication, they are not allowed to do that, should have at least contacted you. We all forget, I have in the past. I am also on 250 mg and 20 of the liothyronine for now! I hope you are feeling better now.
Thanks Jollydolly. Ive just started feeling a bit better since yesterday after my worst panic attack on 19th July. I really thought I was a gonna. I haven't slept more than 2 hours a night un 4 weeks. You're right the gp shouldve contacted me. My condition has only slightly improved but its done that before and rapidly deteriorated too. I'm terrified and anxious. It's been an absolute nightmare. Hope you're doing ok..?
Hi tolla36, Sorry to hear about your panic attack, it is a horrible feeling, I know what I am like. It is very frightening. How do you sleep, is it naps or deep sleep, I am worried for you, because your body needs the sleep and it is not happening. One thing I have been told, is to unload my mind by writing everything down that is on my mind in a private journal. Once written for the day, I put it away in a drawer until the next night. In most cases and it does, empty your mind and it does help you relax and sleep. Evidently it is the rem sleep when we dream is the most important and when we can become anxious. As I have sleep apnoea, it had been noted on my graphs that everything goes eratic in my rem sleep. I know I have had some weird dreams, the sort you can't wake up from but want to. I can't remember them but still disturbing. Perhaps you can try that, just for a couple of nights initially and see what happens. I do hope that you can sleep because it will make a difference, you must be exhausted. You will be surprised when you read back what you have written what is on your mind. Please take care and look after yourself. I am here to chat whenever you want or if you feel panicky. Just message me
Thanks Jollydolly. My problem at night is that I keep get a choking sensation every time I nod off to sleep. This terrifies me and o jump up in a panic and kick start a panic attack. Its utterly awful late at night while the world sleeps and no one can help. Absolute terror seizes me. During the day it just comes out of nowhere. I haven't worked fir 4 weeks because I can't think straight and I'm getting blurry vision and have zero energy & strength. Ive ben disabled by it. At night I just sit up in bed giving it everything I've got to stop the panic. I'm too scared tolie down in case I choke. I only fall asleep with exhaustion around 2/3 am for 2or 3 hours max. I wanna kill the gp who stopped my meds
The choking is quite common and as I have got older, I notice that both my sister and myself choke more often, especially when we nod off. My sister developed her thyroid problem later in life, I was born with mine. Do you lay flat or wedged up? I find it that now since the sleep apnoea was diagnosed, that I have to sleep wedged up as it were with lots of pillows as I can not lay flat - I find it claustrophobic.
What you are experiencing it not right and the exhaustion sounds awful. This my concern for you and your well being. Have you considered getting some of your own, until you can get your prescription back to where it should be, then at least you have a plan B?? You can buy it quite cheaply. If you want a link, just message me and I will send you the one I have been given, evidently very reliable although I haven't used them yet, but will be.
Yes, well, your doctor is thyroid-illiterate. That TSH is much too high for someone on thyroid hormone replacement, and is far from 'normal'. It should be one or below. You need your FT3 tested! Your FT4 is high, but it's obviously not converting to T3, and that's why your TSH is high. But the NHS doesn't want to test the FT3 because it's too expensive!
As you have discovered by now, the NHS doesn't give a tinker's cuss about thyroid problems. It doesn't understand them, nor how to treat them. Which is why so many of us end up self-treating.
Could you get some private tests done? Oh, and don't count on the endo doing anything for you, they know as little as the GPs. You need :
TSH
FT4
FT3
TPOab
TgAB
vit D
vit B12
folate
ferritin
That will give you a fair idea of what is going on. Can you do that?
Your results aren't normal. You need an increase in levo. You want your TSH near 1 and your FT4 level to be near the top of the range not over it.
ThyroidUK is a charity recognised on NHS choices. I suggest you read through the website thyroidUK.org.uk then go back to the GP, or preferably another one in the practice and tell him that you need an increase.
You shouldn't feel cr*p - feeling cr*p isn't normal. If you every feel really really bad then just go straight to A&E - get a relation or neighbour to take you there.
BTW it is worthy you having the Blue Horizon plus 11 test to check your folate, ferritin, vitamin B12 and vitamin D levels if you have not had these tested in the past year. Again the link is on the thyroidUK website.
I'm so sorry you're feeling so unwell but your story is typical. Until I was hypo if anyone had told me that I could see my GP, swallow the meds he prescribed, complain I was still feeling very unwell, and be dismissed I wouldn't have believed it, yet here it is.
I felt very poorly with TSH at your levels and I sympathise. You need to return to your GP and ask for FT3 to be tested and vits D & B12 just for starters. There are a myriad of reasons for you to remain feeling unwell and you may have to seek them out yourself instead of ceding responsibility for your wellbeing to the medics, who you will quickly come to appreciate know less than you do about your condition. They have been advised that swallowing a few pills sorts this out and that it sooo not the case for many.
Off the top of my (bone)head, I would suggest that you're clearly not optimally medicated. There are other things to try beside Levo, but you may have to source and pay for them yourself.
Many of us have been where you are now. Many of us have never returned to a state of optimal health despite our own not insignificant efforts. But being hypothyroid is a chronic complaint rather than the acute complaints the NHS seem more adept at treating. You could do a lot worse than reading people's posts here, and if you want more info, use the search facility or shout out.
(((Naz))) You can feel better, but recovery is not swift, just as the progression in your condition crept up on you, too. My best to you and I'm glad you've found the forum, where there are lots of generous and wise people who can help.
Your TSH may be in 'range' but is certainly not normal. You are on too low a dose of levothyroxine and your TSH should be around 1 or lower or suppressed.
Email louise.warvill@thyroiduk.org.uk and ask for a copy of Dr Toft's Pulse Online article and highlight the question in which he says how low our TSH should be. He was president of the BTA. How doctors are so inept at treating patients whilst ignoring completely troubling and disabling symptoms is beyond me.
If he wont increase you will have to source some levo of your own. Just tell him you are now a member of healthunlocked Thyroiduk.org.uk the NHS Choices for information and advice on how to recover your health and you need an increase in levo whilst showing him the highlighted Dr Toft's instructions.
He told you nothing because he knows nothing about how to treat hypothyroid patients. We need replacement hormones and if his thyroid gland wasn't working properly, believe me he would be on the highest dose possible for him to feel good.
Levothyroxine is T4, T4 converts to T3, T3 is liothyronine and is the active hormone required in every one of the billions of receptor cells. If we can learn that why haven't they been taught as medical students!!!
Blood tests for thyroid hormones must be at the very earliest and fast, you can drink water. Leave approx 24 hours between your last dose of levo and the test. This allows the TSH to be at its highest.
Also ask for B12, Vit D,iron, ferritin and folate as we are usually deficient which can also cause problems.
Like many on this forum some are forced to source their own thyroid hormones and are happy they've done so.
If you don't want to consult with him drop a note and say you want an increase in levo or you will have to source your own as you are fed up to the teeth with having to search for advice outside of the NHS and your fatigue is overpowering - one of the 300 clinical symptoms and he should at least know 10!!
Is he aware his (non) treatment can lead to other more serious illnesses and if you do you will point in his direction.
One of our brave doctors tried to negotiate with the Endocrinology but, it must be something like a 'closed shop' in a Union in that no one of another branch of medicine can make suggestions. Even if that person was seeing those who had been ignored by those who are supposed to be knowledgeable and to diagnose the person who sits in front of them with various symptoms.
This brave doctor (who died of a stroke):-
Some excerpts:
It must be emphasised that Dr Skinner was not doing anything new nor prescribing new medication for the treatment of hypothyroidism; patients were diagnosed and treated for this disease based on clinical signs and symptoms and medical examination before blood tests were established and thyroid replacement using natural preparations was the norm prior to synthetic preparations.
The treatment Dr Skinner used was one that has been used for many years namely thyroxine which is the drug of choice for most patients with hypothyroidism and in those who did not respond to this he used the natural Armour or Erfa Thyroid which were used in the treatment of hypothyroidism before synthetic thyroxine was manufactured. His methods were scientifically sound and he always wrote to the General Practitioners and other medical carers to inform them of his reasoning behind the diagnosis and treatment of patients.
Throughout his work with this group of patients Dr Skinner tried very hard to engage with the rest of the medical profession and address this difference of medical opinion which results in lack of proper medical care in this particular cohort. As far back at 1999 he organised a conference and invited Endocrinologists, General Practitioners and representatives of the Royal Colleges and Department of Health and other medical bodies to engage and discuss their difference of opinion and formulate a way forward for the diagnosis and treatment of these patients. No representative from any organisation except an epidemiologist from the Department of Health attended. The same pattern followed all efforts including further conferences, meetings and letters by Dr Skinner to have a public discussion with medical colleagues to address this shortfall in the care of this particular group of patients.
The Royal Society of Medicine’s reply to Dr Skinner’s repeated request for a conference to address this problem was to organise a conference on thyroid disease and refuse Dr Skinner’s request to speak on his experience in diagnosis and treatment of hypothyroidism.
I just wonder how each one of the UK Endocrinologists have received at least 2,500+ testimonials from patients thanking them for 'saving' their lives in some instances and to their good health through the diagnosis/treatment of one particular UK doctor.
Have you got a friend or family member that could go with you? Educate them on here/ thyroid UK first and maybe they'll be able to stand up to gp better as they can explain the difference in your health.
I totally hear you, it is so exhausting trying to explain to these so called experts. None of them understand. I am not pie hot on these numbers and what you should or shouldn't be and I was born with the condition, but I do know how I feel. Some of our friends here seem to know what they are talking about, I would take their advice. You definitely need to have your blood checked for B12 and anaemia, because that can drain you and cause really bad fatigue, also calcium/vitamin deficiency. My current dose is 250 mcg of T4 which is the thyroxine and 20 mcg of the T3 lithyronine - I feel great but I have been told that my prescription will be stopping shortly for the T3 even though I have been on it for more than 10 years. So thanks to these lovely people sending me a link, I am going to buy it myself. At least when I have blood tests in future and they try to tell me, that my results are ok with out the T3 - I can turn round and say "Gotcha" I am still taking it because I have funded it myself. I was really worried because I thought it would be a fortune, but it won't! No one understands what it is like with a thyroid problem, until they have one, they just raise their eyebrows and you can almost hear them saying "yeah yeah yeah, whatever, making excuses again" But your not, you feel like s.h.i.t and you should not have to!
Even if GP doesn't prescribe anymore, just get the latest results and at least you know, you know you can get some of your own. Don't let them win, because the NHS know naff quite frankly. I was told last Monday, that the money being spent on T3 could be spent elsewhere on more deserving courses! That is what they think of us!
Let them walk in our shoes and see how they would cope. Anyway, I will get myself of the soap box again. Take care, we all understand and I hope you can make some headway soon.
you need your thyroid antibodies, Vit D, B12, folate and ferratin checked
There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's - most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.
As others have already said...your TSH is much too high for someone taking thyroxine. Needs to be at or slightly below one, for most of us to feel well.
If you can get GP to test .......Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.
When you get results suggest you make a new post on here and members can offer advise on any vitamin supplements needed
If you can not get GP to do these tests, then like many of us, you can get them done privately
Dear Naz67, I can fully understand how you feel. Have you been checked for anaemia, B12 deficiency and calcium deficiency? as this can play real havoc, especially with tiredness, aching and irritability. I agree with our friends, that you have a right to be referred to a Endo, although they are not much cop, but at least you can find out more. Read some of the articles that have been posted. Regarding the T3 Liothyronine, it is being withdrawn because of cost. I have had lots of problems with dr's and my Endo this week. I really do feel for you, as when you are feeling low, you feel alone and no one understands unless they are in the same position. It can cause you to feel depressed and low, obviously very irritable (I know that feeling well) and you just want to scream out "Please somebody help me, listen to me" - Some days I was what I call Zombie mode and on one occasion, I remember my daughter saying to me, "mum why are you getting dressed now, its bed time!" I thought it was morning Don't take any notice of your GP's opinions, they know nothing. One question to ask the Endo is "What is normal" Also take a copy of your latest blood tests from the GP. The Endo should do them again to compare, if they don't offer, insist that they retest you - Perhaps someone here, can advise you on what results you should be looking for. I don't really understand them. Hope you get to see the Endo soon, but remember you are not on your own. Keep in touch and take care
You've had a lot of replies here and I agree that you aren't receiving optimal treatment, but rather than an increase in meds I think you need your t3 testing and most probably a change in meds from levo to t3. Your t4 is too high (this is probably why your gp isn't prescribing you a higher dose of levo), and may indicate that you're not converting your levo from t4 to t3. If that's the case more meds will just result in a higher t4, and if your t3 remains on the floor (as I suspect it is) you won't feel any better.
I also think you need a referral to an endo, but ask Louise for the endo list and ask your gp to refer you to someone on it. If that doesn't work out, save up and have a private test. Self-treat if necessary. If I'm right and this is the problem, you won't believe how much better you'll feel (and how quickly) once you're on the right medicine.
It's shocking that you've been left to suffer like this. I totally understand how you feel and how awful it is to be left that way. I feel positively sedated when my meds aren't right, my body swells up like a balloon, I can't think etc.
Naz67 Just to let you know, I had been on 100mcg Levothyroxine for many years but just recently, back in March 2016 when I got a new Levothyroxine refill.....I began feeling so tired and it seemed to have happened with what I thought was my new Levothyroxine refill.... that maybe it had been tampered with or made by another drug company or a Levothyroxine bad recipe gone wrong. These were my thoughts anyway. But my pharmacist assured me they were the very same. So I thought of a small thyroiditis episode I'd experienced a few years back and had discussed it with my doctor later who told me I could have decreased my dosage to half for a short time.....so this is what I did on my own in March. I cut my dosage in half and I felt some better. So I then had enough strength to make an appointment with my doctor and I discovered that my TSH read 8.9 IU. This is high. Right off, my doctor wanted to raise my dosage to 125mcg.!! But I had to explain that if I were to take 125 mcg I'd be flying or be very hyper or nervous and so on like so. A bit later I decreased my dosage to 25 mcg or a quarter of my 100 mcg dosage. Id decreased my dosage down to 25mcg. So she told me to continue on my 25mcg and go back for a blood TSH test in August. I'm still on 25 mcg.... for about 5 months now and I also don't only feel better but I have more energy. I have tried to increase my dosage but when I do, it makes me tired. I do hope this helps you and I hope you can get your dosage adjusted and fell better soon. Do keep in touch with us please.
@lilly228 Ty for ur message, that sounds interesting. I've got more blood tests tomorrow and then wait for a week for the results n go from there. I feel I'm suffering from exhaustion, I feel like I've depleted all my mineral and vitamin stores... Won't be sure until I get the results. Having lots of smoothies, green things and fruit, vitamin tablets etc. Feel a little better today but only a fraction. Yesterday I felt so bad that I was on the verge of going to a&e. I hope u continue to feel energetic and we will see what my results bring!
Naz67 Happy you feel better. It takes a bit of time for our body to catch on. Eating veggies n fruits is definitely good but hope you didn't stop eating meat... A good beef burger I need or any good beef meat as its good protein.. I need protein for sure n I have started to take a B Complex tablet. As for myself I'm tired of ppl telling me what's good or what's not good to eat.. Just makes us worry....Dr Oz.. he's a pain. lol Do stay in touch. ☺️
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Don't take any notice of your GP's opinions, they know nothing. One question to ask the Endo is "What is normal" Also take a copy of your latest blood tests from the GP. The Endo should do them again to compare, if they don't offer, insist that they retest you - Perhaps someone here, can advise you on what results you should be looking for. I don't really understand them. Hope you get to see the Endo soon, but remember you are not on your own. Keep in touch and take care 
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