Low TSH, high T4...with symptoms: Hi, this is my... - Thyroid UK

Thyroid UK

111,203 members129,263 posts

Low TSH, high T4...with symptoms

Exhaustedmumma
Exhaustedmumma

Hi, this is my first post on here, I don’t really know where else to turn.

I was diagnosed with hypothyroidism at the age of 13, I have been on levothyroxine ever since. Recently my dose has been dropped from 200mcg to 175mcg. My most recent bloods showed a low TSH of 0.02 and a high T4 of 17.9. Since my dose has been dropped I’ve been symptomatic again.

I suppose what I want to know is, can a high T4 cause long term problems?

11 Replies
oldestnewest
SeasideSusie
SeasideSusieAdministrator

Exhaustedmumma

We need the reference ranges for your results please, to be able to interpret them, as ranges vary from lab to lab.

Also, just testing TSH and FT4 isn't enough. With a low TSH and high FT4, if you are still symptomatic then it's likely that you aren't converting T4 to T3 very well and your FT3 is low, this can cause symptoms. So you need FT3 tested at the same time as FT4 and TSH.

Also important are optimal nutrient levels for thyroid hormone to work properly. So it would be a good idea to test

Vit D

B12

Folate

Ferritin

If you are in the UK it's unlikely that you will get FT3 tested at primary level, which is why hundreds of us here pay for private tests with one of ThyroidUK's recommended labs.

Thank you for replying so quickly, the results are:

TSH- 0.04 (sorry I was mistaken in the first post) (ranges 0.3-5.0)

FT4- 17.9 (ranges 7.9-16.0)

I also have a chronic liver disease which causes it to go in and out of failure essentially. I have noticed that changes in my bloods often coincide with my liver being in failure. I have questioned if this could be related to being thyroid toxic but was told no it wasn’t. Do you think it’s worth asking the GP for a referral to an endocrinologist?

SeasideSusie
SeasideSusieAdministrator in reply to Exhaustedmumma

I'm afraid I have no knowledge of liver problems and thyroid, so can't comment there.

Some people do well and find a good endo. Many find it a waste of time, when I was referred to one he made my life hell, made me so ill because he was obsessed with getting TSH back into range but but didn't give a flying fig about where my actual thyroid hoormone levels were (FT4 and FT3), they plummetted and I ended up needing to be looked after for 2 years before I took control myself. So personally I have no faith in endos and no time for them, but that's not everyone's opinion.

Before you do anything about seeing an endo, get the full set of tests done to give you a complete picture. Because you wont get them all done with your GP (in the UK) best to test privately.

You didn't say if you are in the UK, if you are choose either of these tests

Medichecks Thyroid Check Plus ULTRAVIT medichecks.com/thyroid-func... and code THYROIDUK gives 10% discount off the normal price

Blue Horizon Thyroid Check Plus ELEVEN bluehorizonmedicals.co.uk/t...

Both tests can be done by fingerprick or venous blood draw (which you arrange at extra cost).

Once you have results for these, post them on the forum and members will help. At the moment, you don't have enough information to know what your problem is.

Oh I’m sorry to hear that, you must have felt so ill! I have seen and endocrinologist before about 8 years ago and he was really good, unfortunately my GP is particularly bad with dealing with thyroid problems.

Sorry, yes I am in the UK. I will have a look at those tests. Thank you very much for your help!

shaws
shawsAdministrator in reply to Exhaustedmumma

As you have always been hypothyroid, I doubt you have ever felt well.

I don't know why you've never been given a combination of T4/T3 at the very least.

Levothyroxine (T4) is the inactive hormone and has to convert to T3. It is T3 that enables our body to function normally and it is needed in our millions of T3 receptor cells. Doctors rarely test the Free T4 and Free T3. I am also sorry you have other problems.

I, myself, was far worse with levothyroxine than before I was diagnosed. T3 added to a reduced T4 immediately made me feel better. Unfortunately the 'authorities' removed T3 from being prescribed and they are completely unaware of the consternation and dismay and their insensitivity caused to many patients who were prescribed it and were well.

It makes me wonder why these people became endocrinologists that they don't listen to their ailing patients who are desperate for some 'professional' input into their recovery. I doubt they have ever suffered with a dysfunctional thyroid gland. If they did they'd certainly prescribe for themselves or their families a replacement which would enable them to have a normal life.

I am not medically qualified but as your liver is causing problems, why have they not given you a trial of NDT. I know they have taken the opportunity to remove this from being prescribed, just as they have withdrawn T3 as well.

As NDT is made from animals' thyroid glands could it be more conducive to you than a synthetic inactive hormone. I'd ask your doctor to test both your Free T4 and Free T3 as both should be near the top of the ranges.

It is more than a disgrace that people who're suffering aren't given options - even a trial to see if symptoms resolve. They pursue doctors who don't toe the line to their guidelines

thyroiduk.org.uk/tuk/testin...

Read, especially the bottom comment on the above link.

The blood tests for a Full Thyroid Function Test is (as early a.m. as possible, fasting and don't take thyroid hormones until after the test). There should also be a 24 hour gap between last dose and test and take hormones afterwards.

Paying for the tests SeasideSusie has suggested will be worth it.

You also state that you have chronic liver disease. Have the 'specialists' realised that the liver has to convert levothyroxine into T3? T3 doesn't need conversion.

I will aslo state I am not medically qualified.

Exhaustedmumma
Exhaustedmumma in reply to shaws

I don’t really remember a day where I haven’t felt tired or in pain if I’m honest! I was labelled chronic fatigue by my endocrinologist when I saw him. Now I think about it, I don’t really remember him offering much in the way of another treatment.

My GP won’t change my dose, despite my being symptomatic, and my bloods showing my T4 dropping. He’s referred my to an endocrinologist at my local hospital. I’m debating paying and going back to the doctor I saw last time. I’m not sure how long I can cope on that lowered dose. Specially with work and a young baby!

shaws
shawsAdministrator in reply to Exhaustedmumma

My God - dealing with undermedicated thyroid hormones and a little baby to look after and also work- my heart goes out to you.

Also Chronic Fatigue, (CFS), Fibro and ME were all named about ten years after the introduction of blood tests and levothyroxine. Believing they had nothing to do with thyroid hormones. Before that we were all given a trial of NDT if we went to doctors - no blood tests then. If we recovered we were hypo and stayed on NDT. Doses, of course, could be adjusted if needed.

Hold on as the Endo may be knowledgeable and sympathetic and I hope you get an early appointment.

I do hope it goes well.

After a drug is swallowed, it's absorbed by the digestive system and enters the hepatic portal system, being carried through the portal vein into the liver before it reaches the rest of the body. In this way, the liver metabolizes many drugs, and this first pass through the liver can reduce the bioavailability of the drugs, in some cases, quite considerably; so any reduction in the functioning of the liver can have a knock on effect on oral drugs. Regarding the thyroid specifically, thyroid hormones of course regulate the basal metabolic rate of all cells, including hepatocytes, and thereby modulate hepatic function; the liver in turn metabolizes the thyroid hormones and regulates their systemic endocrine effects. Thyroid dysfunction can definitely upset liver function, liver disease modulates thyroid hormone metabolism, and a variety of systemic diseases affect both organs; so there is for sure, a complex relationship between the thyroid gland and the liver in both health and disease. On another point, were you ever tested for/diagnosied with autoimmune thyroiditis aka Hashimoto's, as that can cause swinging fluctuations in thyroid hormone levels.

Hi,

I have an undiagnosed genetic condition which causes my liver to go into cholestasis, it has been in cholestasis since I had my daughter last year. I have only just had a normal set of liver function tests.

I had already queried the cholestasis with my gastro consultant, but given the extremes of the LFT’s it can’t be related to the thyroid. I have had previous episodes of my thyroid function tests being abnormal, when my liver is in cholestasis, it’s just because it has been happening for so long, they’re concerned I’m going to end up thyroid toxic.

I have an appointment with my gp to discuss returning to the previous dose now my LFT’s are normal and just keep a closer eye on my thyroid function for the time being. Thank you for your advice

shaws
shawsAdministrator

The following might be helpful and informative:

TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy.

The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your

physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms,

ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your

morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

jeffreydachmd.com/2014/01/u...

Exhaustedmumma
Exhaustedmumma in reply to shaws

Thank you very much for that, it’s cleared a few things up for me, being in the UK we don’t routinely check T3 levels, but I will discuss it with my GP.

You may also like...