Help please TSH too low? Recent blood test - Thyroid UK

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Help please TSH too low? Recent blood test

Timetraveler67 profile image

So worried because my g.p. Requests a telephone appointment as my recent thyroid blood tests for tsh is 0.18 ( range 0.27 -4.20mlU/L my T3 is 4.2 (range 3.10-6.80pmol/L. Wasn’t tested for T4. I feel incredibly ill every day nausea feeling, headaches, weak all over pain in joints and crippling fatigue and brain fog. I’m on 100 mg levo. My endo has discharged me back to my gp now as she was happy with me even though I feel so unwell but she did want to do the short synacthen test but I cancelled it because when I had it 4 years ago I was so ill for a week after and I didn’t want to put myself through that again, now I wonder if I did the right thing.. I should have asked if they can do the test another way, like a blood test. Am I feeling so awful because my tsh is low? My blood test shows I’ve low red blood count it was flagged up, white was also flagged up on the form too. I really need a little guidance I can’t cope with all the health problems including gall stones, m.e. Cfs fibro and arthritics in all my joints. Others are suffering more I know so feel bad putting it all down here, truth is I feel done in especially as last week I got robbed at the ATM machine by 2 men who pushed me around hurting my back. Help advise please thank you x

27 Replies

I'm so sorry to hear you've been mugged! That is awful! I really feel for you because that is one of my biggest fears, and I usually get my son-in-law to go with me, just in case.

No, your TSH isn't too low. It is what it is, and I imagine that your FT4 is at the top of it's range? Or pretty high, anyway, and that you are a poor converter. Because your FT3 isn't that high, and it's probably that that is making you feel ill. TSH itself doesn't cause symptoms whether it's high or low.

I'm afraid you can't replace a synacthen test test with any sort of blood test because it's not about measuring what's in your blood. Why did your endo want it done? Did you have a cortisol blood test that was low? What were the results when you had one 4 years ago?

Take care of yourself, you've had a bad shock and need a bit of TLC - even if you have to give it to yourself. x :)

Dear greygoose thank you for replying to me and your good wishes about being mugged is greatly appreciated. Broad daylight and didn’t see anything suspicious until the 2 men came from no were and mugged me. Could you tell me why would it be flagged up as too low and I have to see my Dr? Will she tell me to cut my dose? I can’t think what to do. The test Results 4 years ago was normal My endo was doing the test then and now to rule out Addison disease I think because of the crippling fatigue I complained of, I refused for the reason I was so scared of being even worse then I am now but today I wonder if I should have had it. I don’t think I have Addison because my skin has not gone dark like they say it’s one of the symptoms you get it’s so hard to make decisions when you’re not feeling well x

Yes, it is hard to make decisions when you're feeling ill, and I think doctors know that, and take advantage of it to make us do what they want.

The TSH was flagged as too low because it was below range, and no-one knows enough about thyroid to know that that isn't the problem. It doesn't mean you're over-medicated.

Doctors are not well taught in med-school about thyroid. And most of what they are taught is suspect. They are taught, for example, that all they have to do to treat hypothyroidism is to get the TSH back into range - anywhere will do - and that TSH under-range is dangerous and causes heart problems and osteoporosis. None of that is true but they just don't question it. Ask probabling question to find out more and they just can't answer because they just don't know. They're like parrots repeating what they've been told without understanding it.

And the lab technicians have no understanding at all. They just have a list of ranges, and they mark results abnormal if they fall under- or over-range, without knowing what that implies. It's all very mechanical, treating us like machines rather than living organisms.

So, unless your doctor has a greater understanding of thyroid than the average, she probably will tell you to reduce your dose. And, you must refuse. You are not well and your FT3 is too low. Reducing your dose will make you worse. Explain to her that you understand the dangers of over-medication (which you aren't) and low TSH (there aren't any!) but you take full responsibility and refuse to reduce your dose.

The short synacthen test should not make you ill - don't know why it did four years ago - plenty of people have that test all the time and it doesn't adversly affect them. But, you don't have to have Addison's for your adrenals to be causing you problems. Hypos often have what they call 'Adrenal Fatigue'. The majority of doctors refuse to believe that exists. And all you really need is an early morning blood test to see the level of your cortisol. It is possible to get a 24 hour saliva cortisol test privately, but getting the blood test is a good start.

The trouble with having the short synacthen test is that it's all black and white, no shades of grey. So, if it comes back that you don't have Addison's, doctors believe that theirs no probelm and refuse to help. But your cortisol could still be creeping along at the bottom of the range, causing problems. So, ask for the blood test instead - your GP could do that.

Having said that, it could just be your low T3 that is causing you to be so tired. Nutritional deficiencies can also cause fatigue. Have you had your vit D, vit B12, folate and ferritin tested?

Dear greygoose please can you tell me what the blood test is called that I need to ask Dr for to test my cortisol? What about holy basil does that help do you know? I will definitely say I don’t want to reduce my levo now you have explained to me, but can you tell me why it’s gone under range, Is it because I need T3 or is it more complicated then that? Your so right about Drs pushing us into excepting things we feel we don’t need, I’ve just refused admission to hospital to have my gallbladder removed I know I’m not well enough to have an operation yet, dr wasn’t happy when I said no but I just know in my gut I’m not up to it. Sorry if I’ve missed out any of your questions I really do appreciate you replying to me it gives me hope thank you. I’m having extensive dental work done at the dentist tomorrow morning I hope it won’t effect me too badly as I’m so sensitive at the moment x

Just ask for an early morning serum cortisol test.

Holy Basil reduces high cortisol. I very much doubt if your cortisol is high, so you don't want to take that.

It's your TSH that is under-range. It is quite complicated, yes. TSH - Thyroid Stimulating Hormone - is a pituitary hormone. When the pituitary senses that there is not enough thyroid hormone in the blood, it produces TSH to stimulate the thyroid to make more hormone. So, when you have a problem with your thyroid - hypothyroidism - and your thyroid hormone levels are low, TSH gets higher and higher because the thyroid cannot respond.

When you start taking levo, the pituitary reacts by reducing the TSH. And the more levo you take, meaning that the FT4 gets higher, the less TSH the pituitary makes until it is satisfied that there is enough thyroid hormone in the blood.

Now, that sounds like the perfect system to tell if someone is taking the right amount of hormone, doesn't it? But, there are several problems with that system:

* the pituitary doesn't always work perfectly - if the thyroid can get messed up there's no reason why the pituitary can't, as well - after all, they are both just glands and neither are perfect.

* when there is thyroid hormone in the blood, the pituitary gets is served first, so to speak, so there the pituitary can be replete, but other parts of the body still starving.

* the pituitary doesn't distinguish between T4 and T3, so if it senses a high level of T4, that's enough to satisfy it and it reduces production of TSH, it doesn't know that that T4 isn't getting converted to T3.

All of which means that the TSH is a very bad test to dose by. BUT, in med school, doctors are taught that the TSH test tells them 'all they need to know', and they believe it without questioning, because what they learn in med school is sacred.

Quite why your TSH has gone below range is difficult to say, but it could be because your FT4 is high. But, as they didn't test it - which is weird! - we can't know.

Hope all that makes sense. :)

shaws profile image
shawsAdministrator in reply to Timetraveler67

At times - when we have a decision to make we have to go by how 'we feel' before we decide and we hope it is the right decision.

SlowDragon profile image
SlowDragonAdministrator

tsh is 0.18 ( range 0.27 -4.20mlU/L

my T3 is 4.2 (range 3.10-6.80pmol/L.

Wasn’t tested for T4.

Refuse to reduce dose until GP has done full Thyroid- that’s TSH, Ft4 and Ft3 together

Plus vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Remember to always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Stop taking any supplements that contain biotin 5-7 days before test- eg vitamin B complex

Are you currently taking any iron supplements

SlowDragon profile image
SlowDragonAdministrator

Ft3 is too low

FT3: 4.2 pmol/l (Range 3.1 - 6.8)

Ft3 Only 29.73%

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

Most people when adequately treated will have Ft3 at least 50-60% through range

So if Ft4 is at top of range already…..you will need addition of T3 prescribed alongside levothyroxine

Roughly where in U.K. are you

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

NHS and private

tukadmin@thyroiduk.org

vocalEK profile image
vocalEK in reply to SlowDragon

Good to see this new page for determining the percent through range. The last time I tried to use the Polish site, it had disappeared. Looks like some English-speaking programmer got busy and worked out a new (improved) calculator for us! Kudos.

radd profile image
radd in reply to vocalEK

vocalEK,

It was FancyPants54's lovely, helpful husband who apparently loves curry 🥘🍛.

And our lovely, helpful administrator helvella’s own version is here (you need Dropbox for this and it will download and sit on your desk top permanently if required). ….……

dropbox.com/s/dl/2hux0bhfw4...

Then there's the new Polish calculator here …. chorobytarczycy.herokuapp.c...

And an English (Canadian) version here ... thyroidcalculators.com/calc...

Take your pick!

helvella profile image
helvellaAdministrator in reply to radd

I think all the above - plus some other calculators - are listed and linked in my Vade Mecum document! :-)

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

Not everything is in this one document - my major medicines document is still separate!

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1ZW...

radd profile image
radd in reply to helvella

hellvella,

I shall constantly carry this about my person.

Ermm .... where's my person? 🤣🤣🤣

helvella profile image
helvellaAdministrator in reply to radd

Download it to your phone - then you really can keep all 269 pages (or whatever it now is) on you. :-) :-) :-)

radd profile image
radd in reply to helvella

I have hel!

Seriously ... .. but only because you said it was a useful reference, and nothing to do with having Dropbox on there anyway 😬.

FancyPants54 profile image
FancyPants54 in reply to radd

A plethora of calculator choice. A pity we don't have the same choice with knowledgeable Endos. or medication types.

(Yes, he's a curry lover and very good at cooking it too.)

I live just outside central London slowdragon. my vitamin D is around 80 and I take a tablet every day also take K2 but did stop for a month when my gallbladder was inflamed. I take a magnesium in the evening with a probiotic and a small spoonful of COD liver oil. I sometimes take a magnesium tablet as I read on here it helps conversation to T3. Although I try very hard my diet is not good because I have so many intolerances I’m becoming scared of all food I’m so fed up of making mistakes and them suffering bad stomach ache for days I tend to stick with what I know is ok, which isn’t much variety, although lately I’ve been making a special effort to eat fresh veg and chicken. I don’t take iron supplement do you think I should? I think it’s important to add that the last 12 months I’ve had to take antibiotics every 3 weeks or so, either for ear infection, water infection, gallbladder inflammation and last week infected ingrowning toenails. Could they be causing some of my problems I don’t know. I thought tsh had to be as low as possible so I don’t understand it. What if my gp says no to blood tests for T4? I don’t have much fight in me these days but will try and insist. When I started this journey I thought if I could get my levels good and tolerate the levo everything would one day be great and I’d get my life back I could never have imagined just how hard and how complicated the thyroid problem can be. Don’t want to take t3 but if it’s the thing that’s stopping me getting well I will Have to do it Because my body isn’t doing it for me is it slowdragon. Your help and advise is worth so much to me thank you x

SlowDragon profile image
SlowDragonAdministrator in reply to Timetraveler67

If taking vitamin D as a tablet remember it needs to be 4 hours away from levothyroxine, same with magnesium supplements (or iron)

Can you afford to get full thyroid and vitamin testing done, via Medichecks or Blue horizon

Blue horizon is usually slightly more expensive, but includes a snapshot cortisol test

Test early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

If taking any vitamin B complex, stop this 5 days before test as contains biotin

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Many, many people on levothyroxine, need addition of T3 prescribed alongside levothyroxine

First step is to get full thyroid test and check vitamin levels

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

I will do that and come back and let you know the results thank you for helping me because I’m worried my dr will try reduce my dose when I have the telephone appointment on the 8th. Thank you slowdragon helping me x

If you take antibiotics so regularly, do you top up your microbiome with a supplement? If not you probably by now have a depleted level of gut bacteria possibly invasive candida and also leaky gut which could account for more of your symptoms than any thyroid issues. This could be why you have many reactions to foods. I have been there with Candida. I was born with it and after minor surgery in my late 30s developed food intolerances, seborrheic dermatitis, ear infections and urine infections. I felt ghastly for 2 years until I found the way back to health. PM me if you need more help on this.

Thank you for the information I think your right because I have thrush now as well. I’ll pm you for more info and help thanks again x

SlowDragon profile image
SlowDragonAdministrator in reply to Timetraveler67

Daily probiotic and eating live yogurt can help with gut bacteria and can help prevent thrush reoccurring

Timetraveler67,

In your next post you ask for T3 suppliers so the post has been closed to replies, & hence I answer here.

Your FT3 levels are low & a likely cause of you feeling so unwell, but in your last post you advised of fasting except for herbal tea and not even taking Levothyroxine. This is a strong reason why your FT3 levels are so low.

Without FT4 levels tested we can not assess why TSH has gone so low, but it is very important to take Levo meds every day and to eat a balanced diet that will keep blood sugars balanced, especially as you have cortisol/adrenal issues.

If you eat well, keep iron and nutrients optimal and take thyroid meds daily, then hopefully FT3 levels would improve. If you take T3 meds without really needing them you could make yourself even more ill.

Gallbladder issues are yet another hypo symptom, as simply put thyroid hormone drives metabolism and inadequate levels actually slow gallbladder function down making bile thick due to the inability to emulsify fats. Thyroid hormone needs good working bile as much as it needs stomach acid. Yet another reason to ensure you take your thyroid meds.

I am glad you are trying to eat fresh veg and chicken, but am so sorry to hear you have been mugged. That is terrible! I hope they didn't hurt you 🥰

Dear radd thank you for replying to me I appreciate it very much. I’ve been struggling for 4 years with taking my levo as I couldn’t tolerate it, took me 3 years to go up to a 100 mg which is what I’m on now. My t3 has been low all through the 4 years I kept thinking I would start to convert but it’s not looking good so being so fatigued and feeling so out of it I’m thinking add some t3 but now you’ve explained things I think I’ll wait a bit. I feel drugged most days Like I’ve taken sleeping pills ( I don’t take anything like that) Always cold ache all over, the last 2 weeks bad headaches every single day too. I will try to eat better but I’m so drained it’s so hard to do anything much. I’ll wait then and not take t3? What shall I tell my dr when she rings on the 8th about low tsh blood test? I’m going to have a private t4 blood test as dr won’t do it. Thank you radd for helping me

Hello time traveler I was just reading your email and wanted to say how sorry I was to hear about the incident at the atm , I was quite shocked really I hope your back and everything is better now , just wanted to say something to you ,but I’ll now finish reading about your thyroid, hope you get sorted out x

Thank you kowbie I really appreciate your concern and kind good wishes. My back is still a bit sore but I’m more shook up Emotionally to be honest, I only told one person and they said well you the bank gave you the £500 back so you can forget it and move On - but the whole incident has knocked my confidence big time. Thanks again for messaging me x

I can understand that when I read it I couldn’t get it out of my head ,so I can understand how your feeling, whoever you confided in doesn’t seem very thoughtful about what happened to you , I wonder if they would be saying that if it was the other way round , they also probably haven’t got the issues you were dealing with before it happened like with your health .anyway I hope things soon settle down for you health wise and hope it’s not too long before you can come to terms with what happened, I’m not that good with words but can I say if it’s possible to go inside the bank to draw your money you would probably feel much safer , I think I would if I had something like that happen to me , all the best pauline (kowbie)x

Thank you Pauline I will definitely be going into the bank to withdraw my money in future. The police have contacted me saying after viewing he cctv footage they are closing the case as they can’t recognise the men who did it. I’m feeling a bit better this week thank you again I really appreciate you x

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