High TSH normal FT4 : Hi, just looking for some... - Thyroid UK

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High TSH normal FT4

Nigelnoonoo6
Nigelnoonoo6

Hi, just looking for some opinions.

Recently had my thyroid checked,

TSH 5.8 (0.3-5.5)

FT4 14 (10-22)

2 years ago it was

TSH 8.5 (0.3-5.5)

FT4 12 (10-22)

Also had my antibodies done

831 (0-24)

Is it normal to have symptoms even when my FT4 is in range as have been feeling extremely tired lately and some brain fog. Just wondering whether it is related?

Thanks

44 Replies
oldestnewest

You really need FT3 result alongside FT4 and TSH to see the full picture. Was this done?

No FT3 has never been offered to me, what would it show?

FT3 is the active thyroid hormone and insufficient or too much is what causes symptoms. FT4 shows how much of the storage hormone you have floating around for your body to convert to active T3. Which in your case is not very much so I would expect FT3 to be low but without a result its just an unreliable guess. Sorry, not a very scientific explanation. Check out Thyroid UKs website for better explanations of thyroid disease. Your thyroid antibodies are elevated so you've got autoimmune thyroid disease otherwise known as Hashimotos thyroiditis.

Very likely you have low vitamin levels, very Common with Hashimotos and it could be the cause of some of your symptoms so you need tests for B12, folate, ferritin and vitamin D. Those need to be optimal. When you've got results post them here even if doc says fine because you need them to be optimal, not scraping along bottom of OK range.

Thank you for the explanation, I will definitely be trying to get my FT3 done as the symptoms are really affecting me now but unfortunately my doctor will not do anything

Just edited my post to add a bit about vitamins. Low vits will also cause tiredness.

Has doctor offered trial of levo? If no, I would ask for it due to elevated antibodies and elevated, above range TSH. Make sure to start on 50mcgs. If doc suggests 25mcgs that will be insufficient and recommendation guidelines are to start on 50mcgs I believe.

Unfortunately no they haven’t offered any kind of medication as they say my TSH level isn’t high enough and needs to be over 10

My last B12 blood test results were 415 [197 - 771]

June25
June25 in reply to Nigelnoonoo6

IF I were you I wouldn't do anything until I got my T3 checked. If your T3 is low then your TSH will go high no matter what your T4 is doing, and you will feel like crap. Some poeple don't convert T4 to T3 very well. Levo won't help in that situation and you will continue to feel like crap. You can get a private test done for T3 from Medichecks or a number of others.

June

Hi, you are not in the UK?

I’m in the UK

I thought you must be. Have put a message on here for you, good luck with everything

Thank you

SlowDragon
SlowDragonAdministrator

Think you are still trying to get diagnosed??

As you have high thyroid antibodies and above range TSH you should be offered a trial of levothyroxine. Standard starter dose of levothyroxine is 50mcg

See/contact GP and ask for trial of levothyroxine as per guidelines

See flow chart on top page 2

gp-update.co.uk/Latest-Upda...

Also request vitamin D, folate, ferritin and B12 tested too ....plus coeliac blood test too

Was this test done as early as possible in morning before eating or drinking anything other than water?

Thanks, yeah still trying to get diagnosed but never seem to get anywhere.

My latest blood test was done at 8:50 am and had nothing to eat since the night before and nothing other that water

SlowDragon
SlowDragonAdministrator in reply to Nigelnoonoo6

Yes extremely common to struggle to get diagnosed

Next step get vitamins tested

Frequently they are extremely low. Improving vitamins can significantly improve symptoms and often raises TSH

Coeliac test too

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms - tick all that apply

thyroiduk.org/signs-symptom...

Your GP can and should offer to start treatment

Catou142
Catou142 in reply to SlowDragon

Hello, I am reading this post as it is quite similar to me. slowdragon, did you mean to say: ‘Improving vitamins can significantly improve symptoms and often diminishes TSH/ instead of raises?’

SlowDragon
SlowDragonAdministrator in reply to Catou142

It depends

if symptoms are caused by being hypothyroid, then improving low vitamin levels often increases TSH so that you can get levothyroxine prescribed or increased

SlowDragon
SlowDragonAdministrator

Suggest you reread previous post

healthunlocked.com/thyroidu...

Thanks, I have read through it just I’m so confused at the moment and wanted to see if anyone had experienced the same thing

You have autoimmune thyroiditis aka hashimotos. Read up on here about hashimotos as it will let you understand what to expect and to interpret what is going on.

In range just means it is somewhere in a set of numbers. The range is the group of numbers where they expect a result to be for a normal person in your area of the country. It is made up of results from folks. So some folks must have been normal with a result of 10 and others with an FT4 result of 22.

Your result for FT4 is 12 but the raised TSH suggests that this is not the normal result for you as the thyroid is being stimulated to produce even more hormone. So maybe your FT4 result should be up at the higher end which is why you are having symptoms.

Thank you for the information, my FT4 levels never go above 14, and my symptoms seem to be worse over the last month, I constantly feel I need to sleep, it makes me feel really down because no matter what I say to my doctor they say I’m fine, even when I certainly don’t feel it.

Don’t feel I have many options as going privately is very expensive so don’t really know what to do

Therein lies your problem. Your FT4 never goes above 14 but your body is probably really needing it at say 18 or 19 for example. You really need levothyroxine.

I certainly do, I can’t deal with the symptoms any more. Just out of curiosity I know when you are hypothyroid people struggle with the cold, can you also struggle with the heat as I find sometimes I’m cold but other times I’m boiling hot. Can that be related to Hashimoto’s?

Yes. Symptoms are individual and can be bizarre. Not all are listed on the sites. I stopped questioning if a symptom was thyroid related and just accepted that it probably was in the end such as a tingling top lip.....it went when my levo dose was increased.

I also have tingling in my top lip sometimes and wasn’t sure if that was thyroid related too, I’m glad I’m not the only one who has that symptom

Thing is if you listed that as a symptom the doctor would look at you as if you were barking!! I was often tempted to try it !

Thank you, it’s nice to have some advice as am fairly new to it

Ask on here. Folks have lots of experience as they were struggling too. It is only by learning from this site and being pushy and firm with the medics that I am on the road to recovery.

BrynGlas
BrynGlas in reply to Lalatoot

I have kicked myself since 20012 when for some reason I felt great and lost 3 stones in weight!

I really should have asked for a blood test then but, as you say, the GP would have sectioned me. Nothing had changed I was on same Levo and no change in diet - though when I realised I was losing I did try harder I admit. I was at 11 stone from 14 st from about May to Easter 2013 and cruelly it all began to increase again.

What the hell is it all about? Sometimes I think that none of it is worth it, but I cannot for shame stop trying to stop lose weight can I? LoL

I think so as my results are within normal range but still perspire at the slightest excuse..part of thyroid condition

BrynGlas
BrynGlas in reply to pam68

I am also more often high in temperature than low, at 68 am still having hot flushes and throwing my clothes off every 5 minutes because when it arrives I panic, I just can't cope with the heat. I have not worn a jumper for years because they are too difficult to remove and the thought of wearing a polo neck fills me with dread. Driving when a hot flush arrives is scary, so on long journeys I wear a T shirt and keep warm with the car heater, turning to the air conditioning instead, when the heat starts. I have a very elderly car, but thank God for the air conditioning which still works.

But even when I am cool again, which usually only takes a few minutes, I have to dress myself again quickly because I have gone very cold again. This makes long journeys very difficult if I am driving a vehicle that doesn't have aircon. I have to remove my seat belt too and on a motorway it can be very risky, try removing your quilted jacket on the M6 at 70 mph without removing your seat belt!

It is a nightmare, so I understand where you are coming from. My GP is very dismissive too and hasn't a clue what is really going on in my opinion. Mine was just put down to menopause when it started, as I was 'at that age' as was everything else.

I am in Wales & have found that giving the GP a list of tests that I need done has worked OK up to now, post it or take it to the surgery yourself and KEEP A COPY.

My GP this week accused me of trying to speak to him in a phone consultation because I was complaining of having a 'swollen finger'.

I was actually trying to be sure that my blood tests were all going to be done on the NHS, and panicking in case I would have to pay privately for them to be honest. But if that sort of attitude doesn't show what my GP thinks of me, what could? He played right into my hands though, because he showed his true colours didn't he, because it was what I suspected was happening, I just needed to prove it.

I have been able to get FT3 as well as TSH and FT4 done & vit D, B12 and Ferritin that way. Though last week they did leave Ferritin and vit D out, which I have requested this week again. I do think that that was an oversight personally though. But last week's blood test also showed something that I had never suspected and it was just a fluke, so there is more than basic hypothyroid going on. If I had not been researching my subject and trying to actively learn about it, I would never have asked for that particular test. So it is worth trying to learn as much as possible yourself, though these girls on this Group are wonderful, they deserve a medal and I wish they could all be salaried within the NHS because they are wonderful and most GP's think they know it all while knowing very little about hypothyroid.

Be prepared to complain if you feel that you have to and make no bones about it. If you leave it to your GP as I did for many years because I was continually told that I was perfectly normal as tests went, but not allowed to see my results. I finally found Thyroid UK in October and this Forum, or I would have also been none the wiser now and probably much worse in health.

This worm finally turned and GP is not happy that I am calling the shots, because I proved that something is very definately wrong with me and it has been wrong for decades in my opinion. They prefer to pat you on the head and leave the surgery because there is nothing wrong in their opinion. I am also complaining to the Health Board so he is aware of that and is very indignant indeed.

The fact that I couldn't have afforded to pay for all of my blood tests myself, particularly vitamin tests, was a big factor in making me decide that I had to complain, otherwise I would get nowhere. So now the Health Board, CCU, MP and Assembly Member all know how hard I am having to push to get things done. Covid of course isn't helping because access to our GP is blocked. Most surgeries have their doors locked.

Good luck, hope things go well for you.

BrynGlas
BrynGlas in reply to BrynGlas

I just saw my post saying that I am more often too hot than too cold, but if I try to take my temperature I have not been able to register my temperature - not basal temp - above 36.4 c. I haven't tried basal temp recently. Because if I try to take that I can't read the damned thing for some reason. It takes me a while after waking to be able to see much or read a thermometer. I think it is the dry eye thing, I am told I sleep with my eyes open. Some times my right eyelid refuses to move and I have to lift it from my eyelid physically, my poor eyelashes take the brunt of that.

But lying there with a thermometer under my arm for 10 minutes just sends me to sleep and I often forget and wake up only realising when my thermometer lands on the floor at my feet! So I gave up on basal temperature attempts.

Is an ear thermometer - digital - ok to use? Because the new oral ones I can't get on with. I know when I was first diagnosed I was told to only use a Mercury thermometer and not a digital under any circumstance. But I don't trust those new things.

Pre diagnosis I had brain fog and fatigue amongst others. I thought I was just getting old for about 2-3 years, the symptoms creep on so slowly they become a new normal and you question whether there is anything really wrong.

Then both my sisters had thyroid issues which is when I got tested.

I got rejected levothyroxine at first, my TSH was 4.6 (0 - 5). It was an offline GP who rejected me based on my blood tests clearly not having read my notes. I ended up writing a letter to the original GP who was much more understanding and put me straight on levo. An initial dose of 25mcg. After 12ish days I was a new person, it was like a spell had been taking off me. Its still quite a journey from there, but focus on one hill at a time. It took me about 6 months to digest all the information on Hashimotos and a full 12 before it really sunk in.

IMHO focus on the diagnosis first and getting a trial of levo. Worry about vitamins, gluten and other mitigations another day. You need to persist with your GP or change if you can. Whatever it takes. There is limited risk to a levo trial (unless say you have heart problems or are very overweight).

good luck.

Nigelnoonoo6
Nigelnoonoo6 in reply to CapnM

Thanks for your answer, is Levo dangerous in people who are overweight then?

CapnM
CapnM in reply to Nigelnoonoo6

Not particularly but obesity and heart risks tend to go together.

Nigelnoonoo6
Nigelnoonoo6 in reply to CapnM

Oh i see was just curious that’s all, thanks

BrynGlas
BrynGlas in reply to CapnM

Yes, I can see your problem, similar to my experiences.

I posted my message this morning talking about basal temp rates and it suddenly clicked that when I got engaged in 1998, I had been seeing the GP here because I didn't feel well, and was not happy with my weight, but got little sympathy.

I had thought of lowthyroid and was trying to work out if it was that that was causing my trouble, but really could not get past my age as being blamed - and I have to say that I never seriously thought I could have lowthyroid, I knew of no one who had it, so it was a totally unbelievable possibility. Though they both arrived at the same time, so I think that it was chicken and egg syndrome.

I had been going through the perimenopause I suppose, working up to the big 'M', since the age of 42 before I left Stoke for Wales, ie heavy irregular periods on and off, exhaustion, not sleeping, irregular weight gain/loss, hot flushes - I still sleep with a pedestal fan by my side to this day aged 68 and I use it frequently. !

I had been trying HRT in my early/mid 40's but was told I could not continue with it after gaining 2 stones at one point over 2 weeks, trialling some patches. So I can see why it was all put down to my age.

I had found that wearing my engagement ring when I went to bed at night was not a good thing, because each morning I had oedema in my hands and I couldn't get my ring off. I had mentioned this to the GP, but he could offer no explanation other than my age.

I only remembered this this morning when talking about basal temperature because I was taking basal temp and pulse each morning when I started getting the ring problems. Not long after talking to him about it he actually apologised that he had not twigged when he heard of my 'ring' problem, because he said that that was another sign of lowthyroid and he had diagnosed me after the famous blood test. I have no idea, but I have not heard of morning oedema since then anywhere.

I bought a size 14 wedding dress in early Jan. 1999, wedding planned for July started to gain and I had to let out my wedding dress before my July wedding because my first experience of gaining weight and being unable to lose an ounce of it was under way, as I now know. No one believed me that I really was trying very hard but nothing worked this must have been about the time that I was diagnosed.

When I was diagnosed low, I cried with joy and thanked God for it. But Levo never worked for me, though I have stuck to it over the years of being accused of sitting eating cream cakes on the couch for day after day watching tv and lying about it continually.

This is why I feel that I have to try to get better treatment. After 21 years minimum of taking Levo I can't continue this way any more.

You did not have FT3 taken. High TSH with normal FT4 *can* (not always) indicate that you are having a conversion problem, i.e. FT3 is low. Why did your doctor not check FT3?

With antibodies that high, your Hashi's is a major problem. Has your doc given you any cues on lowering it? Have you made any dietary changes, e.g. eliminating major allergens like gluten and dairy, to see if that helps?

Nigelnoonoo6
Nigelnoonoo6 in reply to Eddie83

My doctor will not test T3 as they believe it is not significant, I have cut out dairy, but not gluten however I don’t eat a lot of gluten anyway, my doctor doesn’t really seem that helpful but do have an appointment tomorrow with them so hopefully I can push them to test my T3 levels

Eddie83
Eddie83 in reply to Nigelnoonoo6

You need to negotiate with the doctor. Tell the doctor that patient advocates say that FT3 is important when you have elevated TSH but in-range FT4. if the doctor still refuses, the only solution is to go private-pay for that test if you can afford it. BTW, if the doctor wants to play God, remind the doctor that google searches on "high TSH normal FT4" will result in articles describing this situation. What I can tell you from experience is this: as a patient who uses both T3 and T4, it is a fact that I cannot reach the desired state (FT3 and FT4 both mid-range) unless I use liothyronine (T3) in addition to levothyroxine (T4).

Nigelnoonoo6
Nigelnoonoo6 in reply to Eddie83

So if I had conversation problems I would possibly need two different medications?

I will push my doctor to test it, but they do seem very awkward about doing it and continue to say there is nothing wrong with me, despite me saying I feel rotten

This is typical! There is something wrong with you, because of the symptoms you have. Unfortunately, inexperienced doctors think lab test results are all that matter.

Nigelnoonoo6
Nigelnoonoo6 in reply to Eddie83

Luckily my doctor has now prescribed me Levothyroxine after 2 years of convincing them there is something wrong

CapnM
CapnM in reply to Nigelnoonoo6

Great news and hope this is the solution you have been looking for and start of recovery.

I remember when my Levo kicked in around day 13. I was in my local park getting a coffee. I realised I was smiling for no reason and knew something had changed. As I realised the full effects I felt re-born like someone had taken a spell of me. (A bit like when Gandalf lifts the spell from King Theoden in LOTR)

Here are a few tips that may help.

- whilst you should notice a difference in a couple of weeks it can take 6 - 12 weeks for new dosage (and increased doses) to stabilise and have full affect.

- you may fluctuate initially between hypo and hyper whilst stabilising. I had 3 distinct 'hyper' sessions of agitated mind state, hot flushes flushes, racy heart. I did not panic and usually settled within a couple of days. Anything troubling seek expert advice.

- drinking caffeine or eating within an hour of taking will reduce the absorption rate. I have some water and pill ready to go as soon as I wake up.

- Keep a diary of symptoms - not necessarily detailed but say a weekly or monthly note of what you felt in the week. It will help to be able to go back to these.

- don't go 'all in' on supplements or giving up things. A) it can be expensive b) and its pointless to give up things unnecessarily. Take your time experimenting, trial sequentially and monitor results in your health diary. My exception to this is vitamin D which I would take with K2 (Better you) available in H&B, waitrose and other places.

- Look out for seasonal changes. Its a hormone, nothings stays consistent with hormones.

- Levo is not a silver bullet , you will likely get ongoing symptoms and gain some you didn't have before. It is likely the start of a journey but hopefully should feel a lot better.

- Learn how to work (manipulate) your GP. They can be quite precious and don't like patients knowing more than them. And ignorance on thyroid in NHS GPs is high. Don't avalanche them with information, go in agitated about something you read on-line.

- Read the mountain of information on here and other good sites, but consume over time. It took me a year to fully understand this condition and I frequently forget most of it.

- If you can do exercise, moderately to start with then as much as you can. Thyroid hormone affects metabolism and how fuel is converted into the muscles, so it can be difficult periodically. But exercise helped me greatly.

good luck.

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