Hi, I’m a newby to all of this. I’ve been feeling so so poorly for the past 3 weeks. Routine bloods have shown my TSH level is 17.5 with my free T4 at 9.8. I’ve been told this by the doctors receptionist and told the doctor has diagnosed hypothyroidism and that he will ring me in the next 5 days. I hurt everywhere with stabbing pains popping up all over. I’m so tired it’s ridiculous. I’m due to take my grandchildren to Disneyland in a couple of weeks and at the moment just can’t see me being able to walk around all day.
Just after some advice please.
Written by
DaisyandRosie
To view profiles and participate in discussions please or .
Welcome to our forum DaisyandRosie. I am sorry you have hypothyroidism but please do not tell me that your doctor has not prescribed 50mcg of levothyroxine? He should have immediately given you a prescription or told you (or someone to collect it for you).
Levothyroxine is prescribed by the NHS for anyone who is hypothyroid. 50mcg is a starting dose when TSH is 10 or over (whilst in other countries we are prescribed if TSH is over 3 or 4). I shall give you a link from Thyroiduk.org.uk
Once upon a time we were all diagnosed by our clinical symptoms alone. In this 'modern' era it seems the professionals have little knowledge of symptoms or how patients actually feel.
It is a slow process unfortunately, and I wondered what the blazes was this prescription doing as I felt far worse on it than before I was diagnosed.
I shall give you some hints to get the best possible results on a blood test. 50mcg is a starting dose and a blood test should be done every six weeks and a 25mcg increase until we are symptom-free and TSH is around 1 or lower.
Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. Levothyroxine should be taken on an empty stomach with one full glass of water (tablet can stick in throat) and wait an hour before eating as food can interfere with the uptake of the hormones. T4 is also levothyroxine. It has to convert to T3 (liothyronine) and it is T3 that is required in our millions of T3 receptor cells and it drives our metabolism and heart and brain have the most cells.
Always get a print-out of your blood test results with the ranges. Ranges are important for members to comment upon your results. This is due to labs having different machines and may have different ranges.
Ask GP to also test B12,Vit D, iron, ferritin and folate as deficiencies can also cause symptoms. The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges. These two are rarely tested by the NHS and some of our members get their own blood tests through one of our recommended labs.
Thank you for your quick reply. No prescription yet. Just a message that the doctor will phone me within 5 days. I’m so frustrated as I feel so bloody rubbish. My fingers are so swollen and painful that I couldn’t cut my toast earlier. I rang the doctors again today and the receptionist said “it’s not life threatening just you just need to wait” 😢
The receptionist has a cheek. She isn't qualified to make statements about our dysfunctional thyroid gland. To state "it’s not life threatening" proves she doesn't know that it can be if undiagosed or undertreated Let's hope she has a kind doctor if she's ever diagnosed. She just states what the doctors/endos state i.e. diagnose when TSH is 10 and when in range, don't increase dose. Symptoms? what are patients talking about as their TSH is in range - even at 5+.Many professionals seem to have no expertise at all - few will go against the guidelines or may lose their livelihood.
It would be good to have a Conference, in which the patients take centre stage and the professionals are in the audience.
I think a lot of us would like a question (from the professionals) and answers from the sufferers.
I hope Dr Skinner's staff can publish their scientific information as soon as possible but understand they need monies to publish. Maybe a nice and kind millionaire might do so.
p.s. if the Receptionist makes the same statement again ask what are the professional qualifications she has as it is known that people can develop a myxedema coma, which you'd never imagine would happen these days but it does. A few members on this forum did develop myx.coma.It is more common in women.
Regardless of what this person stated, you have been diagnosed, you have disabling symptoms and you do need levothyroxine but are being ignored.
If your doctor has not tested for 'Thyroid Antibodies' ask for these to be tested too. May as well ask for a Full Thyroid Test (it may not be done but ask anyway). A FTF test is:
TSH, T4, T3, free T4, free T3 and thyroid antibodies.
If antibodies are present you'd have an Autoimmune Thyroid Disease - commonly called Hashimoto's. The antibodies attack the thyroid gland and wax and wane until you are hypothyroid, but treatment is the same i.e. levothyroxine.
A TSH of 17.5 will make you feel absolutely diabolical and extreme fatigue is one of the commonest symptoms, although there are dozens or hundreds more symptoms you could be suffering from. Many of us couldn't/can't get out of bed with a TSH over 5. The receptionist's comment that it isn't life threatening is typical of NHS treatment of the thyroid - it's sadistic in the extreme. Hypothyroidism is extremely painful for all sorts of reasons.
I hope you aren't the only adult going to Disneyland with your grandchildren because I really think you won't have a hope of walking around and standing up all day with a TSH of 17.5. To go alone with your grandchildren would be unsafe, for them and for you.
Even when your doctor deigns to give you a prescription of Levothyroxine the starting dose for hypothyroidism in people over 50 or with heart problems is often only 25mcg, and it can often make people feel much worse to begin with. If you are lucky you might be started on a level of 50mcg, but based on your doctor's current lack of urgency I'd be surprised if he did that.
Say your starting dose was 25mcg. In an ideal world this would happen :
Starting dose : 25mcg
Wait 6 weeks, get blood tests.
Increase dose by 25mcg to 50mcg
Wait 6 weeks, get blood tests.
Increase dose by 25mcg to 75mcg
Wait 6 weeks, get blood tests.
Keep repeating the last two steps until your TSH is under 1 and your Free T4 and Free T3 are at good levels. Unfortunately many doctors think that they only have to measure TSH and never measure Free T4 and Free T3 and they only prescribe enough Levothyroxine to get people's TSH down to the top of the reference range. So people continue to feel ill.
It would be better if you stayed at home, and someone else took your place on the holiday.
It’s so good to be able hear from people who understand. Luckily it’s not just me going on holiday. I will just place myself in the middle of the resort and be bag and coat lady (with copious amounts of coffee and cake!) I will ring the doctors again tomorrow and ask for an appointment to see someone urgently, I’ve not got the energy left today to sit on the phone for an hour being told and 20th in the queue. 😡
If you were to go to your doctor's surgery this afternoon or tomorrow, you could ask to speak to the Duty Doctor. Being told that hypothyroidism isn't life threatening is callous in the extreme. It is hugely painful! To have your treatment delayed is sadism.
For lists of hypothyroidism symptoms see these two links :
You could print out the short list, tick off the symptoms you are suffering from and keep it as a reference for yourself. You might want to show it to your doctor as well, but that's up to you. It helps if you keep a list of symptoms, and you should score them out of 10 (the higher the score the worse the symptom) and when you look back in a few months time you should realise how far you have come.
.
Another issue for people with hypothyroidism is that gut problems are almost universal. This is because one of the effects of being hypo is that production of stomach acid reduces a lot. This actually causes indigestion and heartburn (far more so than high stomach acid which is very uncommon compared to low stomach acid). Doctors make it worse by prescribing drugs that reduce or block stomach acid even further.
As a result of the acid problem people who are hypo can't extract nutrients from food very well, and so mineral and vitamin deficiencies or very low levels are very, very common. Many of the symptoms common to hypothyroidism are in many cases caused by or exacerbated by nutrient deficiencies.
Thank you. I’m now waiting on a call back from the doctors after a rant as I was again told to wait for a call back by the end of the week. I explained that I was in severe pain and my face was so itchy and my eyes are swelling. Receptionist has put me down for a call from the duty doctor.
Forget that, just had a call to say the duty doctor has said it’s not urgent and therefore I need to wait for a call from my doctor at some point this week. I’m so upset by all of this. Stupid bloody illness and is this what my future is going to be. 😢
I think the problem is that hypothyroidism is seen as mostly an illness of women. And doctors are trained to believe that women make a lot of fuss about nothing, exaggerate pain, and attention-seek. So hypothyroidism is usually deemed to be a non-serious disease.
Men get hypothyroidism too, although not in the numbers that women get it. And because they are suffering from a "female" disease they sometimes get treated badly too.
The fact that your doctors are not in a hurry to treat you with a TSH of 17.5 makes me think that you might want to find another surgery. You'll almost certainly be left under-treated by the one you are currently using.
You need to ask the doctor you do (finally!) see to test you for the things that SlowDragon listed in her post. The vitamins and minerals are vitally important as well as getting thyroid meds.
As others have said, see a doctor, any doctor urgently today or tomorrow
With mention of Grandchildren presumably you are over 50 years old, so the recommended starter dose of Levothyroxine is 25mcg. It can be too small a dose to make much of a difference, your GP may take pity and start you on 50mcg
It's not an instant fix, unfortunately. It usually takes 4-6 weeks for body to get use to each dose. Bloods are retested 6-8 weeks after each dose increase.
Dose increased in 25mcg steps slowly, retesting each time, this continues until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Ask the duty doctor if you have had thyroid antibodies tested or vitamin D, folate, B12 and ferritin as well.
Always get actual results and ranges on all blood tests, especially today/tomorrow
If vitamins and antibodies have not been tested, ask that they are
Low vitamin levels are extremely common when hypothyroid, especially if the cause of hypothyroidism isdue to autoimmune thyroid disease (also called Hashimoto's)
Do you have any gut symptoms? Low stomach acid is common problem, far too often misdiagnosed as high stomach acid
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
NHS guidelines. Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine but it has to be increased very slowly over many months
I rang the doctors again and was told nothing can be done until my own doctor rings me with an appointment. With my surgery we have to make an appointment for a phone call from a doctor. They will then decide if you’re ill enough to be seen. I was told the doctor has read my results and is aware i need to be seen...at some point!! 😡
If I change surgeries will I have to have the blood tests repeated before I get treatment?
Unfortunately changing may well delay things more ,
Makes me mad .😡😡Just hope you get sorted and started on the road of recovery its not a quick fix so stay here . These people here are very helpful and knowledgable .hugs
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How long until I feel Better on NDT?
How long before you feel a reduction in T4?
How long to feel better?
On average, how long is it likely to take before I feel a decrease of 12.5mcg Levo?
How long before you started feeling better with Nutri Adrenal Extra & Nutri Thyroid supplements? Also, what should I be doing 'Diet' wise?
