Feeling Real Bad - Please help with my latest b... - Thyroid UK

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Feeling Real Bad - Please help with my latest blood results

cherylwadey profile image
22 Replies

My hair loss is at it's worst, as is the weight gain, the constipation, low mood, anxiety, insomnia, constipation and terrible fatigue. My Vit D, Vit B12 and ferritin are all at optimal levels, however my recent blood test on Tuesday has revealed low thyroid levels. I think I need T3 as nothing has helped so far with my hair loss and weight gain or in fact any of the above symptoms. I was diagnosed 8 years ago with an underactive thyroid and was put on Levo 50mg. I am now on 100mg. Please can someone advise on my recent results below:

Serum TSH 0.29 range 0.30 - 3.94

Serum Free T4 13.6 range 12.30 - 20.20

Serum Free T3 3.7 range 3.70 - 6.70

Many thanks

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cherylwadey
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22 Replies
Aurealis profile image
Aurealis

Hi cherylwadey, sorry to hear you feel so poorly. You’re undertreated thyroid wise with Free T4 so low in the range. You need to take more levothyroxine which should raise both fT4 and fT3. There is no need to take T3 unless raising levothyroxine fails to raise fT3. Although your results are in the range, they are not in the right place for you. That’s why you have all these symptoms. Increase dose by 25mcg first, but very likely you may need to raise it more than once. Most of us prefer fT4 near the top of the range or even slightly above. On the day you have tests it’s best to take your dose after the test to avoid false high fT4 / fT3 and false low TSH, (but doctors don’t believe this). Good luck.

cherylwadey profile image
cherylwadey in reply toAurealis

Thank you Aurealis. Your help is much appreciated.

Nanaedake profile image
Nanaedake

Your results are unusual as both FT4 and FT3 are low despite suppressed TSH. Have you any coexisting medical conditions and have you got thyroid antibodies? Also, what were your thyroid test results when diagnosed? Wondering if pituitary is struggling?

Aurealis profile image
Aurealis in reply toNanaedake

I don’t have that much faith in the range! Pituitary is producing TSH so it’s working. Actual levels fluctuate wildly across the day so may be due to timing of test etc. The first priority is to restore health.

Judithdalston profile image
Judithdalston

Have you been tested for thyroid autoimmune antibodies ie have Hashimoto's? You should have FT3 at 5 plus ( 5.20 being mid range)- it is the active hormone you cells need. You could increase your levothyroxin by 25 mcg, to raise FT4 and FT3, but your TSH is already '1 or below', and the ratio FT3 to FT4 is good at 1:3.7, suggesting you are converting. There has been some debate recently on this forum about very suppressed TSH actually inhibiting the increase of FT3.(see Jimh111's replies yesterday to posts on TSH and T3)

cherylwadey profile image
cherylwadey in reply toJudithdalston

Hi Judithalston, I was tested for autoimmune disease many years ago and it was fine. I am so ignorant when it comes to all of this so I really appreciate everybodys input.

Thank you so much.

CameTheDay profile image
CameTheDay

On the constipation front, I'm a lifelong sufferer who ended up having major surgery some years ago due to low gut motility. I've been making and drinking milk kefir for the last six months and it's been a revelation. No constipation unless I go a few days without it. Much less wind. And I've noticed that excessive yeast production, which has led to horrible incessant dandruff, has gone.

cherylwadey profile image
cherylwadey in reply toCameTheDay

Hi CameTheDay, thank you for the information. Please can you tell me where you buy the Milk Kefir from.

Many thanks,

CameTheDay profile image
CameTheDay in reply tocherylwadey

I was given mine by a friend, but there are various links on this thread - thefastdiet.co.uk/forums/to...

SlowDragon profile image
SlowDragonAdministrator

Your under medicated, though you will have trouble persuading GP of that due to low TSH

FT4 should be near top of range and FT3 at least half way in range.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

When you say vitamins are optimal can you add the actual results and ranges, and say what supplements you are taking

Do you take magnesium, this can help with constipation

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies? If so are you on strictly gluten free diet?

If after getting dose increased and FT4 near top of range, if FT3 remains low then yes likely to need addition of small dose of T3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

cherylwadey profile image
cherylwadey in reply toSlowDragon

Hello Slow Dragon,

My tests were done at 9.45am on Tuesday and I had not taken my Levo for over 24 hours. I was tested for autoimmune disease about 6 years ago and it was fine.

I have been to see an endocrinologist privately 3 months ago. He looked at my latest blood results at the time and told me that me Vit D3 and B12 were perfect but my ferritin was too low and I should take liquid iron. My ferritin is now 73. He increased my levo to 100mg but as I said nothing has changed and I still feel awful and my hair loss is at its worst.

I am due to see him next Wednesday with my latest blood results.

In 8 years nothing has changed at all and I seem to be going nowhere with all of this. I suspect he will up my levo by another 25mg and yet again it will be another 3 months of suffering with no change.

Everything I read about the hair loss and feeling rubbish seems to lead to T3. It is apparent that people who are on Levo and T3 feel so much better and I have read that lots of women have actually had their hair grow back once they were on T3.

I just feel at my wits end and worn out but thank you so much for your help and very valuable knowledge.

Nanaedake profile image
Nanaedake in reply tocherylwadey

Please check your thyroid test results when you were first diagnosed before starting Levothyroxine to rule out secondary hypothyroidism. If TSH was low as well as low FT3 and low FT4 it would indicate a secondary problem that needs exploring. You could also check whether you have had blood tests to check liver and kidney function as well as diabetes markers and rule out coeliac disease or other gut dysfunction.

cherylwadey profile image
cherylwadey in reply toNanaedake

Hi Nanaedake, I have been tested for liver and kidney function, diabetes and coeliac and they were all fine. I have no idea what my test results were when I was first diagnosed 8 years ago.

Nanaedake profile image
Nanaedake in reply tocherylwadey

Could you get a copy of historical blood tests? It might help for making sense of what's going on.

cherylwadey profile image
cherylwadey in reply toNanaedake

I will try and get the past results but the receptionists don't seem to like you asking for a print out of the latest results.

Nanaedake profile image
Nanaedake in reply tocherylwadey

If you are in the UK, you can ask GP reception to give you a password to register for enhanced online patient access to blood test results and other information. You are legally entitled to the information. You may need to complete a form and have your ID verified.

cherylwadey profile image
cherylwadey in reply toNanaedake

Oh ok thank you Nanaedake.

SlowDragon profile image
SlowDragonAdministrator in reply tocherylwadey

Some patients find hair loss increases with T3. You need to get your Levo dose up higher first

Can you add these "perfect" results and ranges for vitamin D, folate and B12

They often are not perfect, but need improvement

What supplements do you take?

Have you had zinc levels tested?

Thyroid Pharmacist writes extensively about hair loss

thyroidpharmacist.com/artic...

Not everyone with Hashimoto's has raised antibodies

thyroidpharmacist.com/artic...

Have you had an ultrasound of thyroid ? This can diagnose Hashimoto's or show other problems like nodules

You might consider changing your diet to strictly gluten free anyway

Ask for coeliac blood test first

Judithdalston profile image
Judithdalston in reply tocherylwadey

Don't believe it - hair loss doesn't necessarily stop with T3!

shaws profile image
shawsAdministrator

T3 doesn't necessarily help with hair loss but it is needed in every single T3 receptor cell inour body and there are millions.

Both your Frees, i.e. T4 and T3 are woeful so you aren't on a sufficient dose of levothyroxine. You need both FT4 and FT3 to be nearer the upper part of the range, rather than the bottom.

cherylwadey profile image
cherylwadey

Thank you everybody. I will see what the endocrinologist has to say about these results.

cherylwadey profile image
cherylwadey

Well I saw the endocrinologist last night and he said the above results are all fine. I asked why my surgery had asked to see me following these results and he said they would have wanted to lower your Levo. He said he would write to them to advise that they keep my dose the same. He said a Gluten Free diet is totally unnecessary and usually can lead to diabetes. He told me the fact I am not sleeping is not due to my underactive thyroid and has prescribed amitriptyline. He was pleased that my Ferritin is now at 73 and told me to continue with the liquid iron. I said my hair loss is no better though and he said I wouldn't notice a difference for at least another 5 months. I asked about my weight gain and he said it is due to my age (50) and that I need to go on a totally carb free diet.

I told him I came off the HRT for 3 reasons,

1. I only went on it to improve my hair loss and it made not difference.

2. I cannot stand the Progesterone tablets or combined patches as Progesterone bloats me beyond ridiculous and turns me into a crazy angry woman.

3. I was told that HRT just supresses the symptoms of menopause and when I am made to come off it the symptoms will just return but worse.

He said I should stay on the HRT and that there are other methods which could suit me more and has asked my GP to refer me to one of the Gynaes at Shirley Oaks.

I feel a little disillusioned.

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