Not enough Levothyroxine ?

[Feelingtired123]

Hello, I’ve just had latest bloods back. After op I was ok but now I have palpitations and slight dizziness. Does anyone agree that I may need to raise my Levothyroxine from 125?

[shaws Administrator]

Of course you need an increase. I doubt GP is aware that once diagnosed the aim is a TSH of 1 or lower, so dose has to be increase. Many doctors mistakenly think that a TSH 'in range' is o.k. so we have to read, learn and know what dose is best for us.

We need a TSH of 1 or lower and a Free T4 and Free T3 in the upper part of the ranges. These Frees are rarely tested. Palps can be due to being under-dosed or over-dosed.

Ask GP to test B12, Vit D, iron, ferritin and folate - all have to be at an optimum.

[Feelingtired123 in reply to shaws]

Thank you I will book appt to see doc ASAP as feeling not great.

[Feelingtired123]

Thank you, I hadn’t even seen the cholesterol which I wonder how I will get down. Hopefully my Levothyroxine can be increased today

[shaws Administrator in reply to Feelingtired123]

Higher cholesterol reduces as your levothyroxine is increased.

A higher cholesterol level is due hypothyroidism as our metabolism slows right down. As dose is increased cholesterol should begin to lower. The following is a list of symptoms (thankfully we don't usually have all of them ) they should slowly ease until they disappear (if doctor/endo is good and don't only go by the TSH).

thyroiduk.org.uk/tuk/about_...

The aim is a TSH of 1 or lower and Free T4 and FT3 should be in the upper part of the ranges but rarely tested.

[Feelingtired123 in reply to shaws]

Thank you. I’ve checked the link and it all makes sense now. I went to the docs as my blood pressure was really high and I felt dizzy. I’m thinking I may increase my dose of Levothyroxine to 150 but have no idea if that’s correct. I may or may not get a triage call today despite me saying I feel unwell. I feel so out on a limb with the doctor and all I want to do is feel better.

[shaws Administrator in reply to Feelingtired123]

You may find the following interesting and it is by one of our Advisers, who died through an accident death. He only took one blood test for the diagnosis and thereafter it was slow increases until all symptoms. However he would never prescribe levothyroxine - only Natural Dessicated Thyroid Hormones (NDT) or T3 for patients who were Thyroid Hormone Resistant.

naturalthyroidsolutions.com...

Before the introduction of levothyroxine in the 60's we were given NDT and there were no blood tests at all. Doctors were very experienced on clinical symptoms and we were given a trial of NDT and if we improved we stayed on it.

[Feelingtired123 in reply to shaws]

That sounds very good. It seems the opposite is the case now as they take no notice of symptoms. I’ve had my thyroid removed earlier this year, it was cancer so that’s why I’m just so unsure of Levothyroxine amount. I did originally ask for T3 but that was met with a firm no from doctor.

[shaws Administrator in reply to Feelingtired123]

My goodness - I have my gland and levo was a disaster for me and when newly diagnosed you don't have a clue of why your body is failing - by the way neither did my doctors or specialist none who could diagnose a patient through symptoms - they never took an appropriate blood test either. Eventually I diagnosed myself.

One of Thyroiduk's Advisers (deceased) always derided the way we're now diagnosed and treated. For so doing, he appeared before the GMC. How many doctors in this country treating patients who were hypothyroid, have 10,000 testimonials sent to the GMC for 'saving their lives' by diagnosing and treating them as hypo.

I think the very basic you should be given (and I'm not medically qualified) would be for the professionals to be humane and prescribe a combination of T4/T3 on a 3:1 dose on a trial basis.

hormonerestoration.com/

naturalthyroidsolutions.com...

[Feelingtired123]

Thank you. I’ve actually just called my doctors surgery where it’s really hard to get an appointment so they offer a triage phone call first. But the receptionist asked me what it was for and I said to discuss my blood results. She then looked at the results and told me no action needed so I can’t have a triage call. I’ve just said I was going to increase my dose myself so that now she said I would receive a call ! They make you feel so awful

[shaws Administrator in reply to Feelingtired123]

Go straight to the surgery and request a print-out of your results. Always insist on a print-out in future.

Ensure ranges are shown and post for comments on here from members. The majority of professionals know nothing at all about the symptoms of hypothyroidism and have absolutely no knowledge of how much suffering is endured by many patients who may not have internet connection or don't know how to search.

The only fact the majority of professionals seem to know is to look at our TSH result and if it is within the range, they take no action.

If we're diagnosed the aim is a TSH of 1 or lower - not higher but if it is very low, the assumption is that we've gone hyPERthyroid which isn't the case. The saying 'ignorance is blisss' but it isn't if the professionals know no clinical symptoms which is the aim of a dose which relieves all. Many on this forum don't recover on levo but can be with an alternative which the NHS has now withdrawn from being prescribed. The result ! people are prescribed extra prescriptions to treat the remaining symptoms which may not have the result the doctors imagine and may look upon the patient as a nuisance.

[Feelingtired123 in reply to shaws]

Thank you. I’ve posted my results (above) and the general feeling from people here is that I need to increase my dose but I don’t know by how much. I’m really hoping for a triage call from doc although they don’t seem to think I need to change dose going from what it says on blood results sheet ( no action required)

[shaws Administrator in reply to Feelingtired123]

Increases are recommended at 25mcg increments every six weeks until TSH is 1 or lower but, most of all ,it is how you feel on your dose which is the number 1.

[Feelingtired123 in reply to shaws]

Thank you. I’ve just taken an additional 25 mcg as I’ve had to go to bed feeling terrible. I will now take 150 a day. Feeling really let down by the doctors surgery. They will probably get annoyed with me for increasing my dose but I don’t care. I’d rather feel better and clearly something is wrong if I’ve had to go to bed which I would never normally do.

[shaws Administrator in reply to Feelingtired123]

They appear to have absolutely no idea what a dysfunctional thyroid gland causes to those who develop problems with it. It seems that they think we're all affected in an identical way, i.e. a majority seem to do fine on levothyroxine but there's another group who cannot and do not recover but who are given 'additional' prescriptions for the symptoms and never having their FT4 and FT3 tested. There's also the problem of the TSH - many professionals are under the misaprehension that anywhere in the range is fine. None seem to be aware that the aim should be 1 or lower and both frees in the upper part of the ranges.

They also fail to understand that a group cannot and do not recover on levo alone so need a trial of T4/T3 - some need T3 alone and others need NDT (which used to be freely prescribed) but withdrawn due to False Statements made about it:-

drlowe.com/thyroidscience/C...

Despite three yearly requests by Dr Lowe for an answer they never did have the

courtesy and completely ignored it altogether. No thought of those who were well on it and in the same situation as those whose T3 was withdrawn without notice and the panic that occurs due to these decisions - where's compassion gone - out of the window it would appear.

Compassionate doctors who put the patients' health first are then reprimanded and may have their licences withdrawn.

[SilverAvocado in reply to Feelingtired123]

I feel really angry with your doctor's surgery, too. It's disgusting that you're being left with such poor care after thyroid cancer treatment

I've also had thyroid cancer, and was at least lucky enough to be treated in hospital at first. It's the roll of a dice being treated by a GP, and yours are awful.

They probably also don't realise that after thyroid cancer we need our TSH suppressed, which prevents it from stimulating new cancer growth (which would respond to TSH just as healthy thyroid tissue does).

I would say that this GP is going to keep you sick. Is there an option to change practice, or to see other GPs in the practice? I'd say your choice is to either search and find a good GP, or you'll end up having to buy your own hormone (that's what I, and many other members do).

You've done exactly the right thing by increasing 25mcg. That's best practice, and ideally you will have another blood test in 6 weeks and can adjust again by 25mcg.

[Feelingtired123 in reply to SilverAvocado]

Thanks so much for this advice. I will see if I can change doctors and surgery. Do you have any advice as to what number tsh levels I should be aiming for bearing in mind the cancer issue? I’m guessing the lower end of range. I will have another test in 6 weeks time.

[SilverAvocado in reply to Feelingtired123]

It should be suppressed, which means below the reference range. This is good news for us because most people feel better with a very low TSH.

On Levothyroxine only this will often mean having freeT4 right at the top of the range. Levothyroxine contains T4.

If you add in some T3 it doesn't matter so much what your freeT4 is, as that is just a means to an end - the body converts T4 into T3 to use it. In both cases you need freeT3 in the top third of the range.

My advice if you're thinking of self medicating in the future is to stick around and read the forum as much as you can. I was reading for a while every morning for about 3 months before I was ready to self medicate. Look at lots of people's blood test results and knowledgeable members commenting on them, and eventually get to the point where you're confident to read them, and have a good idea on an approach to dosing.

[Feelingtired123 in reply to SilverAvocado]

Thank you this has definitely made my mind up about T3. And your suggestion about following the platform daily is a great idea. Tonight I feel optimistic. What a roller coaster this is for everyone.

[SilverAvocado in reply to Feelingtired123]

If you're able to get your Levothyroxine tuned by a GP in the meantime it can be helpful. If only because it will mean you have a good foundation to evaluate your results and add in T3 once you're on roughly the correct dose.

The ideal is to be able to keep up your prescription for Levothyroxine, and swap out some of it for T3. Which keeps the costs down and means you get a lot of the benefits of operating inside the system.

[Feelingtired123 in reply to SilverAvocado]

Thank you that’s great advice. I hope it’s not too difficult to get T3 tablets.

[SilverAvocado in reply to Feelingtired123]

When you're ready to buy make a new post asking people to private message you with their sources and you should get some.

[Feelingtired123 in reply to shaws]

It’s so frustrating. I think after this experience I’m going to buy T3 tablets. I’ll have a search on here to find out how to go about it. Thank you for all your advice. I don’t know how I’d cope if I wasn’t able to speak to such knowledgable people here.