High TSH and normal Free T3/T4: I am unsure of... - Thyroid UK

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High TSH and normal Free T3/T4

Jouleskeys profile image
18 Replies

I am unsure of what to do as I don't want to take the drug Levothyroxine as it made me not feel so good.

Free T3 = 4.4 / Free T4= 10.5 / TSH= 8.76 which has been creeping up.

I am a man and find this all weird, though do have Type 1 diabetes.

I haven't really been explained all this either. Just wondering if there is a natural way to deal with it?

Thanks

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Jouleskeys
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18 Replies
Marz profile image
Marz

Diabetes and thyroid issues often go together as they are both Endocrine glands. In fact an untreated thyroid can lead to diabetes.

Levothyroxine or T4 - is not a drug - it is a hormone which your body is lacking. It is important that other things are in place for you to feel well and for the Levothyroxine to work well in the body. So .... have you had FERRITIN - FOLATE - B12 - VITD tested ? They all need to be optimal for you to feel well.

If you have the results post them and people will comment. If you have them done in the future then post the results in a new post so more people will see them :-)

What dose of Levo were you taking ? - and for how long ? - sometimes if it is too small it can make you feel worse. Are you taking any other medications in addition to Insulin ?

Redditch profile image
Redditch

Marz had good advice however levo I'd not a hormone it's a synthetic hormone. Natural Desiccated Thyroxine (NDT) brand names Erfa, Armour or Naturerthroid are natural thyroxine from pigs. Very very hard to get in the UK. I have a private endocrinologist who prescribes it to me but it costs a lot. You should also get your TP antibodies tested, to find out if this is mechanical or autoimmune form as treatment will vary.

You will feel worse and worse as that TSH goes up, don't leave this, either give the levo another go, or get yourself onto NDT fast, and it does take time to feel the benefit of drugs, weeks and months, sorry there is no quick fix

hellybaybee profile image
hellybaybee

Tbh your free t3/t4 looks a bit high too.. There are different brands which may suit you better- generally people are prescribed synthetic t4 with levothyroxine, however there are natural types too... Unfortunately its more difficult to get this prescribed to you on the NHS. You could also try a change in diet or get vitamins which help replenish some of those that are generally lacking in hypothyroid patients- wouldnt recommend not taking anything though... Then you really will feel awful. Dont forget that its all a bit of a balancing act - it takes time for everything to settle down and even to get your dosage right.

108Optimist profile image
108Optimist in reply to hellybaybee

You see the ft3 ft4 being high? They look low to me! !

Angel_of_the_North profile image
Angel_of_the_North in reply to hellybaybee

High?! His FT4 is at the bottom of most ranges, may be under range and FT3 less than halfway up most ranges. But it goes to show that you need to post ranges as well as numbers.

Jouleskeys profile image
Jouleskeys in reply to Angel_of_the_North

Please see my recent results below

SlowDragon profile image
SlowDragonAdministrator

As Marz suggest, first thing to do is get your vitamin levels checked. If any of these are low your thyroid hormones can't work

Also have you had thyroid antibodies 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, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

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 advice 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

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on thyroid test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially calcium, iron or magnesium, these must be at least 4 hours away

Many of us struggle to get use to Levo initially. Especially if dose is too low. But it has to introduced slowly and increased gradually for body to adjust. But the majority do find it ok in the end. The natural pig based hormone (referred to as NDT) doesn't suit everyone, and NHS will not treat with it either. They will consider adding small amount of T3, but not till had really good go at taking Levo (t4) and getting body use to the missing hormone.

Jouleskeys profile image
Jouleskeys in reply to SlowDragon

Yes, I've gone gluten free since January... Looking into the rest and have just posted recent results. Many thanks

greygoose profile image
greygoose

Is there a natural way to deal with it? Depends what you mean by 'natural'. If you mean taking vitamins, then no. Food cannot replace hormones. And it cannot make your thyroid start working properly again once it has started to fail. You need optimal nutrients to help, but you are still going to need to take some sort of hormone, as your TSH is now quite high, and you were actually hypo the minute it hit 3.

Levo - also known as T4 - is just one of the types of hormone you can take. There's also T3 - T4 is a storage hormone, and has to be converted into T3, and not all of us can do that very well. And then there is what is known as NDT - Natural Dessicated Thyroid - made from pig thyroid. People make all sorts of exaggerated claims for it, but there's no proof that any of them are true. They say it contains all the thyroid hormones : T4; T3; T2; T1 and calcitonin. And, whilst we know that it contains T4 and T3, there's no proof of the others, they could have been destroyed in the process of making it into a pill. Also, NDT pills contain fillers, which aren't very natural at all.

We're all very different, and what suits one will not suit the other. We have to try these things and see how they suit us. Unfortunately, most doctors are not very open to experimentation, and are prejudiced against anything other than T4. So, it can be an up-hill struggle.

There are many reasons why levo might make you feel bad. One of them is sub-optimal nutrients. So, as others have suggested, you need to get those checked. Another reason could be starting on too low a dose, and/or not staying on it long enough. It's all trial and error, I'm afraid, and doctors know nothing. We have to learn for ourselves and persevere. I know it's not fair, but life isn't fair. We just have to get on with it. :) Stick with us and we'll see you through.

Do you have ranges for the FT4 and FT3? Ranges are very important because they vary from lab to lab. They look low, but impossible to say without the ranges.

When are you due your next test? When you go for it, make sure your appointment is early in the morning, and fast over-night - just drink water. Always try to have your tests are the same time of day, and always, always ask for a print-out of your results - with the ranges. :)

Jouleskeys profile image
Jouleskeys in reply to greygoose

Hi and thanks for replying. I have set a load of recent results. Please see below. Your background is great and hope that this she's some more light... J

sprout28 profile image
sprout28

I take levothyroxine and i agree with you it makes me not feel so well either. It does not really do anything to help my TSH because its always up and down plus i have palpitations and i am still tired plus i am on other medications too.

What can i do please help me

Eddie83 profile image
Eddie83

Assuming your FT3 is in units pg/ml. So FT3=4.4 is 65% up the range my lab uses: 2.77-5.27. Do you have any previous tests that might indicate your thyroid system runs better, and you feel better, with FT3 near the range top?

Your FT4 is not in the units my lab uses, which is confusing. What are the units? The lab I use has FT4 normal range of 0.6-2.2 ng/dl and obviously your result is not in ng/dl.

You do need to make sure key nutrients like B12, ferritin, D3 are high in range. You do need to tell us whether you have had TPO and Thyroglobulin antibody tests, and whether you have high rT3. Your normal FT3 with high TSH suggests It is possible that you might not have primary hypothyroidism; you might have a less-common syndrome like Euthyroid Sick Syndrome (google that), or a pituitary issue ... in which case you would want to see an endocrinologist who specializes in thyroid. The standard panel suggested by thyroid treatment advocates is TSH,FT3,FT4,rT3,TPOAb,TGAb so if you do another set of tests, it would be a good idea if you had all of those. Is your blood sugar well-controlled, or not?

Jouleskeys profile image
Jouleskeys in reply to Eddie83

They often are low tbh and think that's been the main issue. Hoping that sorting them will help, hence quoting high sugar and carb foods.. Reckon that can help? Thank you for the info btw, most appreciated

Katoir profile image
Katoir

Hi there.

There is a thought that when t3 and t4 are in range but TSH high that you could be low in progesterone. Both thyroid and progesterone can be treated without use of chemical or synthetic ingredients if that's what you choose ( I'm on NDT )

Jouleskeys profile image
Jouleskeys

Here are the latest results which i hope are a bit clearer. I have since stopped levothyroxine and feel better and now do not have nightmares.

Btw, i have had a series of low blood sugars most days which i more than less control and now trying my best to sort that. I'm a type 1 diabetic and it's simply been tricky. Have recently quit wheat which is have a much better effect on my sugar levels, so am gluten free now.

Here's the recent results:

Test resultHaemoglobin A1c level - IFCC standardised Report, Satisfactory, No Further Action

Coded entryHaemoglobin A1c level - IFCC standardised 49 mmol/mol [20 - 41]

Above high reference limit

(NOTE)

HbA1c >=48 mmol/mol: possible diabetes. If patient symptomatic,

diagnosis is confirmed. Consider re-testing HbA1c within 4 weeks if

patient not symptomatic.

HbA1c 42-47 mmol/mol: considered at high risk of developing diabetes. Consider implementing lifestyle measures.

Comment: HbA1c is accepted for the diagnosis of type 2 diabetes in

the UK, but should not be used to diagnose type 1 diabetes or in the

following contexts: childhood, pregnancy, renal failure,

haemoglobinopathy trait, anaemia, HIV, abnormal red-cell turnover,

or any recent treatment likely to affect glycaemia or red-cell

turnover.

In cases of confirmed Type 2 diabetes mellitus, NICE CG66 treatment

target HbA1c is 48-59 mmol/mol

Reference range updated to 20-41 mmol/mol since June 2016

Test resultHaemoglobin A1c level - IFCC standardised Report, Satisfactory, No Further Action

Coded entryHaemoglobin A1c level - IFCC standardised 49 mmol/mol [20 - 41]

Above high reference limit

(NOTE)

HbA1c >=48 mmol/mol: possible diabetes. If patient symptomatic,

diagnosis is confirmed. Consider re-testing HbA1c within 4 weeks if

patient not symptomatic.

18 Aug 2016

Test resultLFT and BONE Profile Report, Satisfactory, No Further Action (Patient Informed)

Coded entrySerum albumin level 41 g/L [35 - 50]

Coded entrySerum total protein level 69 g/L [60 - 80]

Coded entrySerum globulin level 28 g/L [19 - 35]

Coded entrySerum calcium level 2.41 mmol/L [2.15 - 2.6]

Coded entrySerum adjusted calcium concentration 2.4 mmol/L [2.2 - 2.6]

Coded entrySerum inorganic phosphate level 1.05 mmol/L [0.8 - 1.5]

Coded entrySerum alanine aminotransferase level 21 iu/L [0 - 40]

Coded entrySerum alkaline phosphatase level 66 iu/L [30 - 130]

Coded entrySerum bilirubin level 23 umol/L [0 - 21] - Above high reference limit

18 Aug 2016

Test resultSerum lipid levels Report, Borderline, Make an appointment to see nurse (Patient Informed)

Coded entrySerum HDL cholesterol level 1.49 mmol/L [> 1]

Coded entrySerum LDL cholesterol level 3.53 mmol/L [< 3] - Above high reference limit

Coded entrySerum cholesterol/HDL ratio 3.62 mmol/mmol [< 5]

Coded entrySerum lipid levels

Coded entrySerum cholesterol level 5.4 mmol/L [< 5]

Above high reference limit

(NOTE)

Non-HDL cholesterol (total chol minus HDL chol) is recommended for

CVD risk prediction; fasting samples are not required for this.

Non-HDL cholesterol targets for patients treated for CVD risk

reduction are

* 40 % reduction from baseline (NICE CG181, 2014) or

* <2.5 mmol/L (JBS3. Heart 2014;100:ii1)

Coded entrySerum triglyceride levels 0.84 mmol/L [< 1.7]

Coded entrySerum non high density lipoprotein cholesterol level 3.9 mmol/L [< 2.5] - Above high reference limit

18 Aug 2016

Test resultSerum vitamin B12 level Report, Normal, No Further Action (Patient Informed)

Coded entrySerum vitamin B12 level 726 ng/L [160 - 800]

18 Aug 2016

Test resultSerum total 25-hydroxy vitamin D level Report, Normal, No Further Action (Patient Informed)

Coded entrySerum total 25-hydroxy vitamin D level 114.7 nmol/L [70 - 150]

Recommendations for Adult Bone Health: Deficient = <40, Insufficient

= 40-70, Replete = 70-150. This method underestimates vitamin D2.

If patient is taking D2 or unknown vitamin D replacement, please

request D2/D3 assay.

18 Aug 2016

Test resultRENAL PROFILE Report, Normal, No Further Action

Coded entrySerum potassium level 3.5 mmol/L [3.5 - 5.3]

Coded entrySerum creatinine level 90 umol/L [60 - 125]

Coded entryGFR calculated abbreviated MDRD 80 mL/min/1.73m*2 [> 59]

If Patient of black African descent: eGFR must be corrected

(multiply by 1.2)

Coded entrySerum sodium level 142 mmol/L [133 - 146]

18 Aug 2016

Test resultGP IRON STUDIES Report, Normal, No Further Action (Patient Informed)

Coded entrySerum ferritin level 90 ng/ml [20 - 300]

Coded entrySerum iron level 26 umol/l [9 - 29]

Coded entrySerum transferrin level 2.3 g/L [1.7 - 3.4]

Coded entryTransferrin saturation index 45 % [16 - 55]

18 Aug 2016

Test resultSerum urea level Report, Normal, No Further Action

Coded entrySerum urea level 5.5 mmol/L [2.5 - 7.8]

18 Aug 2016Dr Guan Chieng (Clinical Practitioner Access Role)Kings Road Medical Centre (General Practice)

Test resultFull blood count Report, Normal, No Further Action

Coded entryFull blood count

Coded entryTotal white blood count 5.8 10^9/L [4.2 - 10.6]

Coded entryMonocyte count - observation 0.3 10^9/L [0.3 - 0.9]

Coded entryEosinophil count - observation 0.2 10^9/L [0 - 0.5]

Coded entryBasophil count 0.1 10^9/L [0 - 0.2]

Coded entryMean cell volume 90.5 fL [83.5 - 99.5]

Coded entryMean cell haemoglobin level 31.7 pg [27.5 - 33.1]

Coded entryMean cell haemoglobin concentration 35 g/dL [31.5 - 35]

Coded entryRed blood cell count 5.05 10^12/L [4.23 - 5.46]

Coded entryHaemoglobin concentration 16 g/dL [13 - 16.8]

Coded entryHaematocrit 0.457 [0.39 - 0.5]

Coded entryRed blood cell distribution width 12.8 % [10 - 16]

Coded entryNucleated red blood cell count 0 10^9/L

Coded entryNeutrophil count 2.9 10^9/L [2 - 7.1]

Coded entryLymphocyte count 2.3 10^9/L [1.1 - 3.6]

Coded entryPlatelet count - observation 252 10^9/L [130 - 370]

Coded entryMean platelet volume 11.4 fL [7.4 - 11.5]

18 Aug 2016

Note

Coded entryBlood sample taken

17 Aug 2016

NoteHistory: Reply Details.

Consultant Name:

shotliff.

Response:

Only real alternative to T4 / levothyroxine is T3 / lio-thyronine, but may have similar effect, if this is when he went from 25 to 50mcg woiuld go back to 25mcg of T4 if tolerated and we can discuss this in more detail in clinic when he is next here, patient did not mention this whne seen here is clinic in July, and will ask OPA re lateration re this and discuss options then - in future please contact us directly with questions on patinets in our OPA rather than AAU questions e mail line KS.

16 Aug 2016

NoteHistory: self took off levothyroxine due to dreams/nightmares then felt better.

Plan: for updated bloods. sent email enquiry to Dr Shotliff for advice. pending response.

Test requestPathology Request (Request Sent):

FBC (Requested), HbA1c IFCC Profile (Requested), Lipid Profile (Requested), Liver and Bone Profile (includes LFT) (Requested), Renal profile (Requested), Thyroid Function Tests (Requested), Urea (Requested), Vitamin D (no Rx, screen) (Requested), B12 (Requested), Iron studies (Requested)

greygoose profile image
greygoose in reply to Jouleskeys

Joules, nobody is going to see this now, the thread is very old, and way down the list. Copy and paste this into a new question, so that more people see it and can comment.

There aren't any thyroid results, that I can see - apart from the high cholesterol, which is a symptom of low thyroid, and you should resist your doctor's attempts to put you on statins.

Jouleskeys profile image
Jouleskeys in reply to greygoose

what are statins?

greygoose profile image
greygoose in reply to Jouleskeys

Well! I'm very pleased you don't know! lol They are drugs that doctors insist on prescribing to people with high cholesterol. But, they're very dangerous, and unnecessary. So, you shouldn't take them. Your cholesterol will come down as your T3 goes up.

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