Underactive Thyroid symptoms but "normal" blood... - Thyroid UK

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Underactive Thyroid symptoms but "normal" blood tests.

Pinkisbest1 profile image
83 Replies

I have all of the symptoms of underactive thyroid including congestive heart failure but my blood tests keep coming back as "normal" T3 4.4pmol/l (range 3.1-6.8), T4 12.5pmol/l (range 11.9- 21.6), TSH 17IU/ml (range 0-34). I finally got an endocrinologist to prescribe 50mcg of thyroxine which has helped with the symptoms and my heart is fine but she is refusing to change or review the dose. I believe 1.6mcg per kg is the suggested dose?! I feel like I'm banging my head against a brick wall. My usual GP is away until January and the replacement doctor is refusing to listen. Who can I talk to to get a higher dose? What blood tests/ other tests should I be asking for? I have normal vitamin D and B levels and I have had a thyroid scan but am awaiting the results. I am so ill I can't work. I just don't know what to do.

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Mummybear0213 profile image
Mummybear0213

Have you tested for TPO/TG antibodies to see if it's autoimmune related?

I personally think your T4 is low, despite being 'in range'.

I'm only learning about all this now myself but I'm sure one of the more knowledgeable people on this amazing forum will be along to help 😊

Pinkisbest1 profile image
Pinkisbest1 in reply toMummybear0213

Thanks Mummybear0213, I thought it was low too but two GPs and one endocrinologist insist it's fine. Fortunately I managed to get on a low dose before I was admitted properly for heart failure just the 4 visits to A&E on a blue light!! Within 3 weeks of taking thyroxine I had no problems whatsoever with my heart but apparently I imagined it and I was told that I felt better because I got what I wanted and it was the placebo effect. I am so grateful to have found this forum and hear other people's experiences.

Hedgeree profile image
Hedgeree

Hi Pinkisbest1,

Welcome to the forum 😊

Is your TSH 17? Not sure if that's the right range? It's often something like TSH: 0.27 - 4.2 miU/L but does vary depending on the lab.

Pinkisbest1 profile image
Pinkisbest1 in reply toHedgeree

Thank you Hedgeree, oops, my TSH is 2.97mIU/l ( range 0.27-4.2) it was the antibodies that are 17IU/ml (range 0-34)... the perils of posting when you're actually asleep 🤦🏽‍♀️

SlowDragon profile image
SlowDragonAdministrator

Free T4 (fT4) 12.5 pmol/L (11.9 - 21.6) 

Ft4 only 6.2% through range

Free T3 (fT3) 4.4 pmol/L (3.1 - 6.8)

Ft3 only 35.1% through range

T4:T3 Ratio 2.841 

TSH 2.97mIU/l ( range 0.27-4.2)

it was the antibodies that are 17 iu/ml (range 0-34)...

Was this test AFTER being on 50mcg levothyroxine 8-12 weeks

Or BEFORE starting

ESSENTIAL to test BOTH TPO and TG antibodies

Also Vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

which brand is 50mcg

Yes 50mcg is only the standard STARTER Dose levothyroxine

The aim is to slowly increase dose upwards until all symptoms are gone

Usually Ft4 (Levo) and Ft3 are at least 60-70%through range

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

most endocrinologists are diabetes specialists

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

come back with new post once you get FULL thyroid and vitamin testing

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

Thank you so much SlowDragon, I'll investigate further following all of the information you have posted. I really appreciate your insight.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

If test was AFTER being on 50mcg 6-8 weeks you need immediate 25mcg dose increase to 75mcg daily and retest again in another 6-8 weeks

Or if results from BEFORE starting on Levo …..you need to retest after 6-8 weeks on 50mcg

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

The results are fron after about 5 weeks of levothyroxine. I am going to request new blood tests because none have been done since the beginning of September. I've been on them for a couple of months now and I feel a lot better than I did before I started the drug but I am still very unwell.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

I feel a lot better than I did before I started the drug but I am still very unwell.

Levothyroxine isn’t a drug……it’s replacement thyroid hormone, because your body is no longer making enough

Like a diabetic needs insulin……a hypothyroid patient needs replacement thyroid hormone……usually that’s levothyroxine

Dose is started slowly at 50mcg ……but it should be increased slowly upwards in 25mcg steps until TSH around or under 1…….Ft4 and Ft3 at least 60-70% through range

Request new thyroid test and request they also test vitamin D, folate, ferritin and B12 as low vitamin levels are common side effect of being hypothyroid

Book early morning test and last dose Levo 24 hours before test

You will need to test antibodies privately

With TPO antibodies at 17 - below range of 34 - these are negative

NHS won’t currently test TG antibodies unless TPO antibodies are over range

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

I have vit b12 injections so my values are always high. I have large doses of VitD too so my values are always reasonable but I was very ill for a year with almost no vitD in my system in 2017. I then had a sleeve gastrectomy so have been on supplements ever since of multivitamins, vit d and vit b. I will definitely get my GP to redo the tests to make sure. They did do the antibodies testing and T3 on the NHS in July so I'll just ask for them to be re-done. Thank you so much for all the information. It's so helpful. 🤗

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

They did do the antibodies testing and T3 on the NHS in July

What were antibodies results

Currently NHS only tests thyroglobulin antibodies if TPO antibodies are high

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Gastric sleeve will almost always result in poor nutrient levels

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and may help improve B12 levels too between injections

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

Hi SlowDragon, thank you so much for your detailed advice and links. I only had the thyroid peroxidase test not the other one. So I'll add that to the list of blood tests I'm going to request. I take Sanatogen a-z which does have biotin but not folate in it so I'll stop that before the tests. It also has the other b-vitamins in at over 100% of the NRV. Should I take more do you think?

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

Generally we never recommend multivitamins

Most are cheap, poor quality ingredients and contain iodine (not recommended if hypothyroid, especially if autoimmune)

I only had the thyroid peroxidase test not the other one. So I'll add that to the list of blood tests I'm going to request.

NHS won’t test TG antibodies unless TPO are high

You will need to test privately

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

Thanks, I'll look into the options. I have a multivitamin on prescription from the bariatric team as it is required after surgery. I was allergic to the other supplements they prescribed so this was the second option. I can't afford to pay for supplements so it would need to be something on prescription. But I will definitely look into one that doesn't contain iodine. Thanks for the heads up.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

I was very ill for a year with almost no vitD in my system in 2017. I then had a sleeve gastrectomy

Perhaps you were hypo back then too

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

Yes, I think I was born with it. I had goiter as a child that was misdiagnosed as sickle cell anaemia which isn't possible because I'm mixed race not black. It went away so nothing else was done but having read up on the symptoms of underactive thyroid in infancy I had all the symptoms. Also, I have had at least half the symptoms my whole life. 🤦🏽‍♀️ I had requested testing before but I kept getting told the results were normal. It's only because I now have all the symptoms of untreated underactive thyroid and I have been so ill that I have pushed for further testing. I had a thyroid scan two days ago so hopefully that might shed some light on the situation but I'm starting to think it's a pituitary gland issue. I'm just not sure so it's so helpful that I have found this wonderful forum where people know so much more than me...and the doctors.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

you can read members profiles

Many of us have had very long, difficult thyroid journeys

This is a an extremely common disease, but rarely well understood or well treated by medics

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

Thank you. I'm seeing that. I am so grateful that I've found this forum, the doctors make it sound like I'm the only one and that I'm making it all up. I'm 51 now and have been battling with this forever. Every ailment I've ever had is on the list for underactive thyroid and I just keep getting told it's because I fat. I am so grateful to find help from people who get it.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

25 years ago approx……I was 5-6 years into being treated for hashimoto’s…..left on far too low a dose Levo ….stuck in bed or wheelchair. Trawling around different endocrinologists…..all the medics saying same thing

“Never seen anyone so unwell with “just hypo“

The MS specialist I saw said he thought I was on too low a dose Levo. He gave me conviction to push hard for second opinion on thyroid

At a specialist NHS metabolic thyroid centre, I finally met a young female junior endo…..she said …..”we see 100’s like you. You’re very under medicated”

I could have hugged her ……finally someone who wasn’t gaslighting me

at the time on only 75mcg Levothyroxine my TSH was 2 …..but Ft3 was well BELOW RANGE

Of course GP and local endo (diabetes specialist) had never even tested Ft3

More on my profile

Vitamin levels are crucial

And often gluten free and dairy free essential

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

I'm so sorry you had to go through all that. I am in a similar situation. I have been house and mostly bed bound since I had a fall last year and have been getting worse ever since. Even the low dose of levothyroxine that I'm on has made me see how much better I could be if I was on the correct dose. I am very glad you were able to get proper help and I am eternally grateful that you are sharing your knowledge and expertise. I have an appointment on Thursday with a different endocrinologist so I am now armed with even more information so I can press for what I need with far more knowledge so thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

Remember

Levo doesn’t top up thyroid

It replaces it

You need next dose increase

Retest in another 2-3 months

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

Thanks for the clarification. I'm very new to all this as I haven't investigated the details very thoroughly until the beginning of this year. I didn't know anything other than the symptoms list on the NHS website. I now have the list from Thyroid UK so I have done more research. The more I find out, the more determined I am to get the proper help. It's literally going to be life changing . I desperately want to go back to work and live a full life as I was before I got ill with long-covid which was the catalyst for my worsen thyroid symptoms. Fingers crossed the doctor on Thursday will be better or at least listen and not tell me I'm imaging it all. 🤞🏼

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

Long Covid ……can actually be vitamin deficiencies

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

I had covid from March 2020 and was very ill and have had many health problems that have lingered. They have now mostly changed into different versions. For example, I had very bad carpel tunnel in both hands from covid that used to be helped by splints. The weakness has now gone, the pins and needles have stayed, but the splints don't help so it's like I have a different version of it. I have multiple things such as that that only arose from covid but that are on the underactive thyroid list of symptoms. Unfortunately/fortunately, because I was so fit before I got covid my blood results are within the normal range for everything standard so I'm having to find other solutions like I'm finding here. I have had this problem before - I was ill with TB and my peakflow was 430 which is normal but I couldn't breath properly. It turned out that when I had recovered my peak flow was 650. It is the same for my bone density as well. I just don't think the "normal" test ranges take into account enough variance. 😩

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

Pins and needles is frequently low B12

healthunlocked.com/search/p...

Carpal tunnel is extremely common hypothyroid symptom

healthunlocked.com/search/p...

Low vitamin levels hide how hypothyroid you might be because low vitamin levels tend to lower TSH

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

That's really interesting. I knew carpel tunnel was a symptom but I wasn't aware of the extent of the vitamin effects. I have vitamin b12 injections every 3 months so the levels are always high unless I am due the next dose. Unfortunately, I don't have any records from before I had the injections as it wasn't tested. Who knows what my normal levels would be. I do know that I get very bad fatigue on the lead up to the next dose. I will definitely be chasing this up further with my GP and the new endocrinologist this coming week. Thank you so much for all your help today. I feel really empowered to push for the right tests and treatment now.

SlowDragon profile image
SlowDragonAdministrator in reply toPinkisbest1

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and may help maintain B12 levels between injections

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Noelnoel profile image
Noelnoel in reply toSlowDragon

I have a friend with long Covid who refuses to believe nutrients have anything to do with it. Is there a study I can show him please

SlowDragon profile image
SlowDragonAdministrator in reply toNoelnoel

I think this post speaks for itself

healthunlocked.com/thyroidu...

Suggest your friend gets full thyroid and vitamin testing

humanbean profile image
humanbean in reply toPinkisbest1

the doctors make it sound like I'm the only one and that I'm making it all up.

It's incredibly damaging to patients both physically and psychologically, but doctors do the same thing to lots of us. Most patients who suffer with thyroid disease are female, and so there is a gender issue - and ironically this has the effect of causing issues for male patients too, who are assumed to be suffering from "a female disease". This poor treatment is very annoying, very unfair, and very sadistic and has made me try to diagnose and fix as many of my own health issues as I can. I also avoid doctors for any ailments that are invisible.

Pinkisbest1 profile image
Pinkisbest1 in reply tohumanbean

Hi humanbean, yes, it's very damaging to mental health. I am extremely stressed and not really sleeping as my mind reels with ways to convince the next doctor that I need proper diagnosis and the correct prescription. I have been heartened by this forum and by people's help and kindness. I have got enough evidence and documentation, especially from the NICE document to argue the toss with whichever doctor I see. The previous endocrinologist I saw has changed my prescription from 50mcg ad day to 75mcg on Saturdays and Sundays following my formal complaint to PALS. Absolutely ridiculous. I'm waiting to see how I get on with Thursday's endocrinologist. I hope you are keeping well and are able to get the help you need. As you say, avoiding doctors as much as possible is definitely the way forward unless you need treatment that only they can provide.

I am saddened to know how many others have been, or are in the same situation with this disease. Determination is the name of the game and being prepared with facts to argue the case. The more people stand up to the battle the better we will be.

Noelnoel profile image
Noelnoel in reply toPinkisbest1

The previous endocrinologist I saw has changed my prescription from 50mcg ad day to 75mcg on Saturdays

Far better that she suggested 12.5 alternate days ad infinity (until next consult). Much gentler on the body of someone who’s already unwell and perhaps low on nutrients. A weekend hike is so unsettling on the body of someone whose health is compromised

Pinkisbest1 profile image
Pinkisbest1 in reply toNoelnoel

Thanks, yeah, and they are refusing to monitor anything. 🤬 I have got a referral to one of the NHS doctors on the Thyroid UK list so hopefully I will get some help. I also found an NHS department called a Persistent Physical Symptoms Centre which apparently are in most if not all hospitals who's remit it is to help diagnose and treat people with long term physical pain who are not getting help elsewhere. I'm praying that they might be helpful too. 🤞🏼🙏🏽

Noelnoel profile image
Noelnoel in reply toPinkisbest1

Really. Didn’t know of such a thing. You could be their ideal candidate then. Let’s hope

Pinkisbest1 profile image
Pinkisbest1 in reply toNoelnoel

Yeah, I'm getting my GP to refer me. I need to have some blood tests first. I spoke to someone on the phone who seemed enthusiastic about helping me. I'll definitely post an update when I know more.

Noelnoel profile image
Noelnoel in reply toPinkisbest1

Hi Pink

What makes you think being mixed race precludes sickle cell

cks.nice.org.uk/topics/sick....

Pinkisbest1 profile image
Pinkisbest1 in reply toNoelnoel

You need both parents to pass on the gene and it only occurs in people of African heritage.

Noelnoel profile image
Noelnoel in reply toPinkisbest1

To get semantic about it, if both parents are mixed race then technically so are their children and if they’re of African heritage then it’s just as possible

Only pointing this out in case anyone reading this gets comfortable in the idea that they or their descendants (children) are safe from it

Pinkisbest1 profile image
Pinkisbest1 in reply toNoelnoel

Thanks. My mum is white, English with Scandinavian heritage so I definitely do not have it. Others will I am sure find it helpful to know.

Noelnoel profile image
Noelnoel in reply toPinkisbest1

Same here

Lulu2607 profile image
Lulu2607 in reply toPinkisbest1

Hi Pinkisbest1 . Have you tried speaking to the pharmacist attached to your GP surgery about your current dose of levo. As said in other posts, your TSH and T4 are too high/low respectively for someone already on levo and still symptomatic like you. I have found the clinical pharmacist at the surgery much more understanding on this point than GPs who often have a very black and white view of 'in range so no problems'. The pharmacists are taking a bigger role in advising patients and agreeing dosage requirements. Ask your surgery if you can make an appointment to speak to the pharmacist about your levo dose (usually tel appointment). Tell the pharmacist that Thyroid UK advises that TSH should be nearer 1 when on levo and your T4 is far too low and you are still having some bad symptoms. Please could they increase your dose? (75mcg). You have a strong case with your current readings.

Pinkisbest1 profile image
Pinkisbest1 in reply toLulu2607

Hi Lulu2607, thank you, I didn't know that the pharmacist could do that. I'll definitely make an appointment with them this week. It's definitely a minefield out there. Are any doctors trained in how to deal with thyroid issues or indeed patients in general??? They speak to you like you're an idiot, give you the wrong information then send you on your way. If I had listened to doctors I'd be dead by now. Thank you for your insight and expertise.

fatbum profile image
fatbum

you could get various blood tests from what country you come from and the ranges, my diagnosis range uk in 2011 was ft4 12 to 22, my daughter s range was in 2015 9 to 19 don’t no the tsh, there’s other ranges in the uk, I was told by an advanced nurse men, women and children all have different ranges , which makes a mockery of what she said, because I just got my partner diagnosed in 2024 a male ft4 11.1 to 22, the 2015 ft 4 9 to 19 diagnosis was better. I think now in the uk they are only going by the tsh, as I have seen the ft4 or any antibodies being checked. So I don’t know how they can truly gauge our medication dosage.

fatbum profile image
fatbum in reply tofatbum

Don’t know if this was to the right comment

Pinkisbest1 profile image
Pinkisbest1 in reply tofatbum

Hi fatbum, I'm in London UK using the NHS. The ranges are based on the lab reported ranges then compared to what is normal for your age. Also, the lab ranges can change depending on the current protocol for their testing methods. You have to be referred to an endocrinologist to get the advanced tests but I got the majority done by my GP but I had to ask for them specifically. She did them because I kept badgering her and told her the specific ones I wanted to have done, otherwise I was being fobbed off with just TSH and T4 test.

fatbum profile image
fatbum in reply toPinkisbest1

thanks for replying, I know they say it’s an age thing but , in 2011 it was the same range 12 to 22 for both my 14 year old daughter and myself at 40, I was diagnosed then and for my boyfriend at 66 the range used a few months back was ft4 11.1 to 22, my daughter got diagnosed 2015 ft4 9 to 19. My daughter at the 12 to 22t was0.3 off being diagnosed, an advanced nurse recently told me she would have diagnosed her as she was a child. She also asked if I’d put in a complaint about the dr.I hadn’t, but because I also knew she had the same pituitary issues as me at 14 and 19 and thyroid symptoms, I knew that it could cause miscarriage, so she was diagnosed straight away in pregnancy, although she should have been on medication at the beginning of her pregnancy.

arTistapple profile image
arTistapple

You say you have congestive heart failure? Strictly speaking you should be seeing a very knowledgable endocrinologist. I am forever on here moaning that endocrinology is such a Cinderella specialism. Never seen and never paid any attention to by other specialisms, including very definitely GPs. No doctor I am aware of ever takes this important connection into account, including cardiology.

There has hardly been anyone mentioning the association of thyroid and heart connection even on the Forum.

However all of a sudden, there seems to be quite a few people mentioning having a heart problem.

I am presently pursuing and attempting proper treatment from endocrinology/cardiology.

It’s an extreme uphill struggle.

Pinkisbest1 profile image
Pinkisbest1 in reply toarTistapple

Hi arTistapple, thank you for your reply. I was literally drowning with the levels of fluid in my body. I was in A&E 4 times, had numerous tests and was told there was nothing wrong and that I was just unfit and fat so I should lose weight and I would be fine. I have spent my whole life eating healthy and competing at a high level in sport but I am still big. Now because I've been so ill it seems like I live on deep-fried Mars bars to those who are quick to judge. I am so glad that you say there is a known link between heart problems and thyroid problems. I did read that if underactive thyroid isn't treated it can lead to slow heart rate which is what I had but I kept getting told there isn't. 🤦🏽‍♀️

fatbum profile image
fatbum in reply toPinkisbest1

My heart murmur and jaundice in birth made me realise my low heart beat which was nearly none existent the week before I was diagnosed with hypothyroidism was all connected. The thyroid is connected to every cell in our bodies, the liver, diabetes, cholesterol so much. We also have hormone receptors in our brain which affects us feeling full and our cravings, affecting the thyroid, pituitary, and hypothalamus, and these store fat differently in our bodies. It’s a fascinating subject when you read up on it, it’s taken a lot of guilt away about my eating and weight issues.

Pinkisbest1 profile image
Pinkisbest1 in reply tofatbum

So true. I had jaundice at birth too. In fact everything I have ever had wrong with my body is a symptom of underactive thyroid. It's so weird to realise one problem has caused so many issues. All this time so many of those problems could have been avoided if more was known. I have my fingers crossed that the appointment I have later this week will be with one of the endocrinologists who knows what they're doing or at least will listen to me.🙏🏽🤞🏼 The biggest problem I have had getting help is with medical people deciding all my problems are because I'm fat. Apparently if I lost weight everything would be fixed!! How they decide carpel tunnel is a fat issue I don't know but there we have it. I hope you are getting the right support and treatment now.

fatbum profile image
fatbum in reply toPinkisbest1

Carpal tunnel is associated with hypothyroidism. Hope your appointment goes well. Take care

Judithdalston profile image
Judithdalston in reply toPinkisbest1

I am a 4 1/2 year Long Covider too, though many of my ailments predate this ( hypothyroidism, diabetes and fibromyalgia) LC has left me with postural hypotension (PH) that is BP falls down dramatically to 61/40 on standing, and HR goes up to 135 ish. Bp is high at rest. Cardiologists have done ecgs, echocardiogram, 24 hour BP monitors, and had chest X-says they say nothing wrong but was left on 5 hypertensive drugs for raised BP at rest. The title table test diagnosis of PH was done by a Falls consultant in a Geriatric Dept. Anyway my GP is insisting the high HR is related to ‘over medication of Levothyroxine’ , my TSH is 0.02 range on a 100 T4/15 T3 combo, the T3 taken via private endocrinologist but the GP doesn’t understand this. He has reduced my levo.by 25 mcg to 75, and I have really felt it with worse fibromyalgia. So I have been researching the heart/ hypothyroid connection and came across on article by an endo. Dr. Salman Ravri et al….Google him and his work. It’s very heavy going only part way thru it, but you might find info. to help your cause there. He has also published on long Covid. I am seeing him, or his NHS team, early Nov. and will report back to the forum on the experience.

Pinkisbest1 profile image
Pinkisbest1 in reply toJudithdalston

Dear Judithdalston, thanks for the information. I'm sorry to hear you have long-covid too. It has definitely had a major impact on my health too. It is what aggravated my hypothyroidism to the point of actively needing intervention. I had about half the symptoms before and just made the best of it but long-covid definitely tipped me over the edge. One thing you might want to refer to with your doctor is pg 6 of the NICE guidelines. It says " The goal of treatment is to alleviate symptoms..." on pg 7 it says " Even when thyroid tests are within the reference range, changes to treatment may improve symptoms for some people." The document is 60 pages long but less than half refers to underactive thyroid. It is the protocol they are supposed to be following so quoting back at them should help. 🤞🏼🙏🏽I'll find the link and post it in a minute.

nice.org.uk/guidance/ng145

You can read it online or you can download the pdf.

RedApple profile image
RedAppleAdministrator in reply toarTistapple

There is a whole book dedicated to the subject of thyroid and the heart.

This is the second edition of the book, so I guess that suggests it's important!

amazon.co.uk/Thyroid-Heart-...

Thyroid and Heart book cover
Pinkisbest1 profile image
Pinkisbest1 in reply toRedApple

Hi RedApple, fantastic, thank you. Now if we can just get a few doctors to read it...In the meantime, I'll definitely get a copy and educate myself on the matter. Thanks again for the information. 🤗

RedApple profile image
RedAppleAdministrator in reply toPinkisbest1

Did you check the price, it's not cheap 😧

Pinkisbest1 profile image
Pinkisbest1 in reply toRedApple

Okay, that's going to have to be a library copy...it's £85 on Amazon 😱

It's just gone down to £73!!

RedApple profile image
RedAppleAdministrator in reply toPinkisbest1

£58 for the paperback

Pinkisbest1 profile image
Pinkisbest1 in reply toRedApple

Yeah, out of my price range at the moment. I'm on benefits as I can't work and am on the verge of losing my flat as I'm not able to pay my mortgage. I will definitely be suggesting it to the doctors I meet when they tell me I'm inventing conditions though. I might be able to get it via the university library as I am studying so have access to the library system. I'm very glad that such a book exists. It gives me hope that at least someone knows the problem exists.

RedApple profile image
RedAppleAdministrator in reply toPinkisbest1

It's worth keeping an eye on the Amazon listing, because it does occasionally come up with a second hand copy at a much more sensible price. I know a couple of members have managed to get one this way in the past. But if you can get a copy on loan through the university, that would be even better of course. Fingers crossed!

Pinkisbest1 profile image
Pinkisbest1 in reply toRedApple

Great to know. I'll put it on my watch list. I do prefer to have my own copy of useful books if possible. In the meantime I'll check out the uni library online. Thanks again

helvella profile image
helvellaAdministrator in reply toPinkisbest1

£38.01 plus almost £11 postage to UK from ABEbooks in Germany:

abebooks.co.uk/servlet/Sear...

RedApple profile image
RedAppleAdministrator in reply tohelvella

Going down... 😊

Pinkisbest1 profile image
Pinkisbest1 in reply tohelvella

Great thanks helvella 👍🏼

arTistapple profile image
arTistapple in reply toPinkisbest1

I have been watching this book for at least three years. It’s never been as cheap as that. However as far as I can make out the info is already out there in the research papers. I will send you the info. I would awfully much like to read this book because ……

Would it be ok for me to PM you?

Pinkisbest1 profile image
Pinkisbest1 in reply toarTistapple

Hi Tistapple, thank you for the heads up. I'm going to ask the university librarian to find it for me. I am not comfortable with DMs as I have never been in a forum so I'm not sure of the rules or the safety aspects. Maybe you could share some links of anything you think would be helpful? Thank you.

arTistapple profile image
arTistapple in reply toPinkisbest1

Apologies can’t make them easily accessible as I can’t turn them blue.

Here are the links: Thyroid Hormones and Cardiovascular Function and Diseases. Journal of the American College of Cardiology Foundation. Vol. 71, No. 16, 2018.

Hypothyroidism and the Heart. Methodist Debakey Cardiovascular J. 2017. doi:10.14797/MFCJ985DW-13-2-55

Both should be easily found.

Both PaulRobinson well known thyroid advocate and author and similarly Thyroid patients Canada do an excellent review of the Hypothyroidism and the Heart paper. Very very useful in themselves.

I wanted to give you info re: one of the authors whom I have consulted. That is not allowed on the main open forum, hence my offer on the open main forum to show there was no skullduggery in attempting to PM you.

Pinkisbest1 profile image
Pinkisbest1 in reply toarTistapple

Hi arTistapple, sorry if I caused offence. I really appreciate your offer. I'm new to chat rooms and online communications so I'm just trying to be careful.

arTistapple profile image
arTistapple in reply toPinkisbest1

Off course you do. Very wise.

Judithdalston profile image
Judithdalston in reply toarTistapple

That is the article I was referring to pink is best,, but I have an abbreviation for the journal title I couldn’t make sense of ! I’m very slowly reading it! Got an appointment with Ravri, or team, early Nov. , hope I do better than you did and get some treatment/ sense out of him!

arTistapple profile image
arTistapple in reply toJudithdalston

Judith please PM me when you have seen him. Off course you can report on the Forum without naming him.

PaulRobinson in particular does an excellent review of the second paper I mentioned, rather than reading the paper itself.

The Razvi one I found quite straightforward.

Judithdalston profile image
Judithdalston in reply toarTistapple

Re Razvi one: my brain fog doesn’t like all the abbreviations and names of ‘things’ as numbers and letters, but the diagrams are good…he or whoever actually wrote it does have sensible English ‘round ups’ which is more than can be said for some who deliberately use jargon that only fellows in their tiny sphere understand. I’ll look at Robinson link. I hope if I see Razvi, rather than one of his team, he hasn’t got some preconception what’s wrong with me from bad feedback from GP ie over medication by levo., and listens to me…yes I’ll tell you how it goes! X

helvella profile image
helvellaAdministrator in reply toarTistapple

Links to PubMed:

Thyroid Hormones and Cardiovascular Function and Diseases

pubmed.ncbi.nlm.nih.gov/296...

Hypothyroidism and the Heart

pubmed.ncbi.nlm.nih.gov/287...

Unfortunately, HealthUnlocked doesn't seem able to handle DOI links properly!

Pinkisbest1 profile image
Pinkisbest1 in reply tohelvella

Thanks helvella. I'll have a look. I am so grateful to everyone for sharing their resources and knowledge so generously. 🤗

arTistapple profile image
arTistapple in reply tohelvella

Much appreciated helvella.

Noelnoel profile image
Noelnoel in reply toPinkisbest1

If you have access to the British Library it can be borrowed there. I know it can be made available for the reading rooms but can’t remember the rules on home lending. Don’t think it’s possible

Judithdalston profile image
Judithdalston in reply toRedApple

See Salman Ravri is an editor!

SlowDragon profile image
SlowDragonAdministrator

This article is by Heart specialist

TSH should always be under 2 when on levothyroxine

Most feel best with TSH below 1

gponline.com/endocrinology-...

Pinkisbest1 profile image
Pinkisbest1 in reply toSlowDragon

Thanks for the article. I am even more angry with the doctors I have already seen now. Cardiologists, endocrinologists, GPs, all giving me wrong information and failing to follow any proper protocol. At least now with the new information and articles everyone has shared today I can argue my case with even more information not just what I had managed to find thus far. I might even get a good night's sleep knowing I am on the right track. 🙏🏽

tattybogle profile image
tattybogle

This post has a list of a few papers i've collected re. thyroid / heart :

healthunlocked.com/thyroidu... thyroid-disease-effects-on-heart-and-cardiovascular-system.-

Pinkisbest1 profile image
Pinkisbest1 in reply totattybogle

Hi tattybogle, thank you so much. I'll have a look at those today. 🤗

pennyannie profile image
pennyannie

Hello PInkisbest :

Normal - in the context of thyroid blood tests means in the NHS ranges :

Hypothyroidism is in the lower part of the T3 and T4 ranges :

In order to be well - we need optimal levels of T3 and T4 which are unique for each of us but probably somewhere in the top quadrant of both the T3 and T4 ranges.

There is a massive difference between being at the bottom of the T3 range to being at the top of the T3 range -

and it is T3 that is the active hormone, that is the power to kick start one's metabolism and provide the energy needed to get through every day and to restore, rebuild and replenish the body overnight, when we sleep, ready to the next day.

Pinkisbest1 profile image
Pinkisbest1 in reply topennyannie

Hi pennyannie, thank you so much for your message. I just wish the medical professionals knew as much. One endocrinologist who was working from a select list of my medical records discharged me back to my GP stating that I should be put on statins and see a dietitian... I have low blood pressure and am already under the care of the bariatric experts. They make me so angry. Hopefully the next one will be better. 🙏🏽

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