Some blood results (thyroid experts required)

[EmmaL76]

Morning all, I’ve recently done some private blood tests. I’ve only ever had one set of bloods done through my diabetes clinic since my diagnosis which has been nearly 2 years and nobody has even looked at my feet. I was put on the list for mental health support in Jan 21’ heard nothing and due to weight was told a dietician would be calling me to arrange some help that was ages ago that also never happened. Sorry that went off on a bit of a rant but just explaining why I go private. It’s the only way stuff gets done. Well these results were mostly good news. The main ones were, Chol 4.8 which has gone down quite a bit and all ratios optimal. Hba1c 36 ( I’m on insulin now for those who know my story) vitamin D was borderline so will sort that. The one sticking point was thyroid. Not sure if any of you know much about thyroid but the comment from the doctor was my results showed an unusual pattern. I will attach a picture. On looking back over my last thyroid tests the T3 and 4 have always been a little on the low side but as my TSH is always ok does this mean it’s not hypothyroid ? I feel like dog poop all the time you see and I know nothing about thyroid stuff. Worth mentioning, I had covid last week and the test was done shortly after. Could that mess with thyroid ? Is this worth (trying) to bring up with my doctor ? Looks a bit borderline ? Thanks in advance

 

[ColinUK]

"Overall, the results of this study indicated that abnormal thyroid function is common in patients with COVID-19, particularly hyperthyroidism, and that TSH suppression appears to be associated with higher levels of the inflammatory cytokine IL-6."

Granted this isn't the largest of studies but it does suggest a link.
https://www.thyroid.org/patient-thy...esults of this,the inflammatory cytokine IL-6.

 

[EmmaL76]

"Overall, the results of this study indicated that abnormal thyroid function is common in patients with COVID-19, particularly hyperthyroidism, and that TSH suppression appears to be associated with higher levels of the inflammatory cytokine IL-6."

Granted this isn't the largest of studies but it does suggest a link.
https://www.thyroid.org/patient-thyroid-information/ct-for-patients/october-2020/vol-13-issue-10-p-3-5/#:~:text=Overall, the results of this,the inflammatory cytokine IL-6.

Thanks Colin! Im doing another test this week to see if it was covid related. I just want to feel better, i feel rubbish most of the time and I usually just consider diabetes and maybe perimenopause, never really thought about thyroid. Don’t think my numbers are too low to cause such symptoms though and the doctors comment with my results did question if I’d been poorly.

 

[AndBreathe]

Thanks Colin! Im doing another test this week to see if it was covid related. I just want to feel better, i feel rubbish most of the time and I usually just consider diabetes and maybe perimenopause, never really thought about thyroid. Don’t think my numbers are too low to cause such symptoms though and the doctors comment with my results did question if I’d been poorly.

Emma, I have just seen this thread - apologies.

I wouldn't suggest I'm a thyroid expert but have spent a long time learning about it. I have a few challenges myself. I will be very interested to see what your forthcoming bloods turn up.

As a general rule of thumb, a TSH over 2 is less than ideal Euthyroid patients usually have a TSH of 1 or less. Your T4 is under range and your T3 only just over the line.

The relationship between TSH, T4 and T3, put very simplistically is the TSH is not generated in the thyroid, it is a signally hormone generated by the pituitary gland. It basically calls your thyroid into action. Your thyroid the secretes T4 which is then converted to T3 by a complex process I won't bore you with. T3 is actually the key hormone. It's where the action is.

The your T4 is low is a bit of a shame, but your body can actually convert to an extent. (My body is totally rubbish at converting - amongst other things)

Many people need their T4 and T3 to be well into the ranges before feeling well. Personally, I have never achieved that despite taking significant levels of medication. That said, although my numbers aren't stellar, I do feel well, which is the main thing.

When you had your thyroid bloods done, did you have the thyroid anitbodies done too? Autoimmune thyroiditis (often referred to as Hashimoto's or Hashi's) can show "normal bloods but lots of symptom -often VERY variable. To reach any conclusion you really need to have the antibodies done.

If your original tests were only done very recently, it could be worthwhile deferring the retest a bit. I know you are looking at a potential impact of Covid, but routinely there would usually be a period of around 6 weeks between tests.

 

[EmmaL76]

Ahh thanks so much for your input. I have had thyroid tested quite a few times over the last couple of years and I will attach the results. See what you think of these. Everyone always says it’s fine so what would your opinion be. Don’t worry I know it’s only speculation. I will hold off doing the other test for a couple of weeks. Thanks again
And nope as far as I know no antibody test for thyroid

 

[EmmaL76]

Sorry here is another one. These have all been done over the last 2 years

 

[AndBreathe]

Sorry here is another one. These have all been done over the last 2 years

Top and bottom is unless you have high antibodies, you would not be diagnosed with thyroid issues.

It is my understanding that only Endos will request thyroid antibody tests on the NHS. Even they will ofetn only do them once, although if they have shown up, then no need to repeat.

Whilst NHS blood tests suggest TSH "normal" range to be up to 4.2 (may be slight variances by labs), but routine treatment will often not be started until the TSH reaches 10. For those with persistent symptoms a GP can trial Levothyroxine once the TSH breaches 5.

If you have antibodies it means your thyroid is under attack, so treatment is often started immediately to try to prevent further assault.

Is your GP engaged with this, or does he/she have no clue? if your GP is not engaged, I suggest you engage them now - even if you feel you won't get much joy..

My own GP was very sympathetic to my plight and started TSH immediately I breached 5, but I had been living in utter misery for a few years by then. My thermostat was totally off the scale. On toasty days like today, here and overseas, I would be cold and wearing a sweatshirt.

 

[EmmaL76]

Ohh thanks, I hadn't realised any if this. Yes my gp has reviewed my results and said they are fine. So my results don’t really mean anything without the antibody tests then? I will suggest this. I had more thyroid tests done on diagnosis by an endo but have no way of knowing what the results of those were or if antibody’s were done. Thanks again you have been very helpful

 

[AndBreathe]

Ohh thanks, I hadn't realised any if this. Yes my gp has reviewed my results and said they are fine. So my results don’t really mean anything without the antibody tests then? I will suggest this. I had more thyroid tests done on diagnosis by an endo but have no way of knowing what the results of those were or if antibody’s were done. Thanks again you have been very helpful

The Endo may have done them.

Like T1, the absence of antibodies on a single test doesn't rule out autoimmune hypothyroidism, but the presence rules it in.

You could call the Endo's secretary and ask if they were done, and if so, the results. They'd be looking for "Thyroglobulin" and "Thyroid peroxidase" antibodies.

 

[EmmaL76]

I’ve found an online company that do that test for quite a reasonable price. Absolutely no point talking to my doctors, to be honest they have been appalling. I am antidad positive which does seems to have some kind of connection to thyroid so it may worth checking. I’m just beyond exhausted, heart palpitations drive me insane, low blood pressure, my pre-menstrual horrendous and ovulation is agony so maybe peri menopause.
It’s just I feel I don’t have a life at all, I get the odd day with a little energy but for the most part it’s pretty awful. After a recent business sale I’m currently not working, I desperately want to but right now I can’t see how that is possible… I honestly can’t. It’s that bad, I feel like I’m walking through treacle and don’t even ask about my digestion. To some people I must sound a bit like a stress head who literally always has something wrong, but I’m actually quite a positive person, somethings wrong and I try and fix it, hence all the testing. I very rarely bother my doctors because on the odd occasion I have they have been quite unresponsive. I’ve paid private for nearly everything just to get back on track. When my MODY results finally come through the endo will have to speak to me, I’m gonna tell him I can’t carry on like I am. I have suffered with anxiety but I’m actually ok with being diabetic now, it’s just all this other stuff. Sorry for the chapter and verse of my shitty life, just sometimes when I think of the day ahead it’s quite overwhelming. Took my girls shopping on Saturday first time in at least a year that have done anything like that, after about half hour, I was like sorry kids you have fun but I got to go. It’s really depressing

 

[AndBreathe]

I’ve found an online company that do that test for quite a reasonable price. Absolutely no point talking to my doctors, to be honest they have been appalling. I am antidad positive which does seems to have some kind of connection to thyroid so it may worth checking. I’m just beyond exhausted, heart palpitations drive me insane, low blood pressure, my pre-menstrual horrendous and ovulation is agony so maybe peri menopause.
It’s just I feel I don’t have a life at all, I get the odd day with a little energy but for the most part it’s pretty awful. After a recent business sale I’m currently not working, I desperately want to but right now I can’t see how that is possible… I honestly can’t. It’s that bad, I feel like I’m walking through treacle and don’t even ask about my digestion. To some people I must sound a bit like a stress head who literally always has something wrong, but I’m actually quite a positive person, somethings wrong and I try and fix it, hence all the testing. I very rarely bother my doctors because on the odd occasion I have they have been quite unresponsive. I’ve paid private for nearly everything just to get back on track. When my MODY results finally come through the endo will have to speak to me, I’m gonna tell him I can’t carry on like I am. I have suffered with anxiety but I’m actually ok with being diabetic now, it’s just all this other stuff. Sorry for the chapter and verse of my shitty life, just sometimes when I think of the day ahead it’s quite overwhelming. Took my girls shopping on Saturday first time in at least a year that have done anything like that, after about half hour, I was like sorry kids you have fun but I got to go. It’s really depressing

This is Emma, if your GP is no engaged, my feeling is it will be trickier to start treatment should your breach the thresholds.

At the time I was perpetually freezing I was lucky my GP was supportive and ordered up tests every couple of months. She was near triumphal when she called me to tell me my TSH had gone over 5.

The thing about thyroid challenges are they tend to be quite "bland" and associated with so many things across the physical and mental ranges.

It's not easy if you are atypical. The first Endo I saw looked at me, said I was neither fat nor nearing bald, so he doubted there was much wrong with my thyroid, and after one scant set of bloods sat back in his chair and said "I doubt we'll every get to the bottom of this."

Trust me, he was lucky to live. I'm neither a volatile nor violent person, but I could have done mortal damage that day.

There are loads of private companies doing such tests nowadays. I notice the Thriva logo on one of your tests. The basic test at £8 looks decent value on the face of it, but bearing in mind the mechanism of thyroid function (TSH calls for T4, then a healthy body converts T4 to T3), you aren't getting the full picture (although in fairness your body does seem able to convert).

The £30 test is very good value with the antibodies in there.

When did you last have your vitamins tested? Your GP really should be doing this, or addressing your concerns in a different way.

 

[EmmaL76]

You really are being so helpful… I appreciate it so much. The test I was looking as was this one (will attach) it’s on offer at the minute but not as cheap as £30, where did you see that one? Mortal damage omg that made me laugh.
When I spoke to my doctor, although she was really nice, not much was done, she tested me for anemia and although my ferritin was low which I have since corrected, I wasn’t anemic. She said it was probably electrolytes because of my diet and said a dietician would be in touch the following week, that never happened. My vit d is borderline and b12 good, and full blood count was normal. I think something will be on my records saying I’m a bit of a basket case, I had depression caused by some trauma before my diagnosis which I did nothing about then diabetes, because I was quite unusual and I had serious stomach pain (which was later found out to be pelvic congestion which was operated on ) I went through very rigorous cancer testing. On Christmas Eve I was sent for gene testing for all the female cancers and told I would the results on Boxing Day, well that Christmas was fun, when I got the all clear from those a doctor called and said my blood work was messed up and they believe i could have pancreatic/stomach or eosophigal (refuse to even and try to spell that word) cancer. I had a breakdown right there and then. Thankfully after camera down the throat, scans CTs and bowel testing I was given the all clear. It was rough and my anxiety was so bad that I couldn’t go back through that doctors door, so I changed doctors and have gone from over zealous to can’t be bothered with you.

 

[Hardy]

I agree with everything And Breathe has said.
Drs tend to go by thyroid test results when it should be by symptoms.
I sometimes visit HealthUnlocked Thyroid UK website.
https://thyroiduk.org/help-and-support/private-thyroid-tests-in-the-uk/ - this is places that offer blood tests with discounts.

Good luck, it sounds like you have a lot to deal with​

 

[EmmaL76]

Thankyou so much. There is something just not right. Most days I say to myself , maybe this is all in my head, but honesty the best I can do sometimes is just get through the day. My endo who will see me again with test results is also a thyroid specialist and I’ve never brought this up with him before as to be honest I’ve always been told it’s fine . So hopefully one day in the future I can be normal (ish) again x

 

[Hardy]

It is absolutely definitely not in your head. You are the expert of your body. What you describe could easily be thyroid related. You will find many similarities to peoples experiences on the Health Unlocked Thyroid forum, So I hope your endo will be open to listening and discussing the possibility. Maybe open to having a trail of levothyroxine to see if symptoms hopefully improve somewhat - then a higher dose. If it is thyroid related - in theory once you are at the optimum dose you won't have symptoms. It is a slow process though, because Drs like you to be on a dose for 3 months, then re-test - and dose increases tend to be small.

I was lucky enough to be seeing an excellent GP, who made the diagnosis based on low T4. I don't know what the TSH was at that time, but it wasn't overly raised. I was experiencing a depressive episode at the time, but when I described my symptoms she did thyroid testing. I'm thankful that she didn't assume everything was depression related.

As And Breathe said, the symptoms have so many cross overs with multiple conditions physical health wise and mental health wise.

I hope you will be normal (ish) again too x

 

[SB1]

Hi just stumbled across your thread and your story really resonates with me at the moment and the battle to figure out why I feel this awful. I am lucky I have private medical and have lots of tests done as I was convinced it was my thyroid due to the fatigue. You mentioned digestive is it bloating etc, headaches nausea, etc?

I managed to get testing done for menopause, thyroid, etc all came back as normal - I then had a scan in my pelvic area which was all clear but they picked up an inflamed bowel loop which then triggered more tests (now panicking thinking about Bowel Babe) Thankfully nothing showed up there and they ended up saying IBS and probably peri-menopause. Whilst this was all happening and after a day where I could barely get out of bed knowing that Diabetics can sometimes suffer from Celiac disease (although a test for this did not show up anything) and desperate to try anything I started a gluten-free diet. Felt awful in the first 24-48 hrs but after that, it has been a game changer, I have my energy back my digestive problems have cleared up, and not dashing to the toilet all the time and my brain does not seem so foggy.

I have managed to get a prescription for HRT (although not started as can't get hold of the damn stuff) so hopefully have turned a corner.

I am now going to push for a pump as convinced the tresiba has made me gain weight I can't lose. Vit D has also helped.

You just need to keep fighting and remember the squeaky wheel gets the oil. Good luck

 

[EmmaL76]

Hi just stumbled across your thread and your story really resonates with me at the moment and the battle to figure out why I feel this awful. I am lucky I have private medical and have lots of tests done as I was convinced it was my thyroid due to the fatigue. You mentioned digestive is it bloating etc, headaches nausea, etc?

I managed to get testing done for menopause, thyroid, etc all came back as normal - I then had a scan in my pelvic area which was all clear but they picked up an inflamed bowel loop which then triggered more tests (now panicking thinking about Bowel Babe) Thankfully nothing showed up there and they ended up saying IBS and probably peri-menopause. Whilst this was all happening and after a day where I could barely get out of bed knowing that Diabetics can sometimes suffer from Celiac disease (although a test for this did not show up anything) and desperate to try anything I started a gluten-free diet. Felt awful in the first 24-48 hrs but after that, it has been a game changer, I have my energy back my digestive problems have cleared up, and not dashing to the toilet all the time and my brain does not seem so foggy.

I have managed to get a prescription for HRT (although not started as can't get hold of the damn stuff) so hopefully have turned a corner.

I am now going to push for a pump as convinced the tresiba has made me gain weight I can't lose. Vit D has also helped.

You just need to keep fighting and remember the squeaky wheel gets the oil. Good luck

Thankyou so much for reaching out it’s so nice to know it’s not just me, but obviously I don’t want you to suffer too !

Its so funny you should mention gluten as my mum has cut out all gluten and said the same as you.. game changer. My diet is really restrictive and I’m not sure if I really eat any gluten ? But I will definitely look into that one. I feel like my stomach ruins my life, I don’t get headaches really but the fatigue is so bad. It like yesterday I went to a wedding reception and I have to time everything right. See if I’m hungry my tummy swells and gets uncomfortable, after I’ve eaten I’m ok for like 10 mins and then the twisting pain and bloating starts so I have to be really careful as if being diabetic isn’t enough of a pain ! One thing I have noticed is my mood is very obviously dictated by hormones, the week before period and during im so so low, I seem to pick up around ovulation time and a bit of energy comes back then it all starts again. My ovulation is getting ridiculously painful too. I will try to get to the bottom of it because I’m so fed up with it. Thanks again xx

 

[SB1]

I also have acid reflux so maybe look into that as that causes bloating and is worse when I have not eaten for a period of time. Just keep researching and keep going back until you get it right. My sister-in-law cannot get the NHS to recognise she has issues with her thyroid so went to a private specialist that then put her on the medication and she is like a different person. Although she does have to fund it all privately and the blood tests. It is not just about these TSH levels you need a more detailed report (not sure what) but that is what she was telling me.

 

[EmmaL76]

It is absolutely definitely not in your head. You are the expert of your body. What you describe could easily be thyroid related. You will find many similarities to peoples experiences on the Health Unlocked Thyroid forum, So I hope your endo will be open to listening and discussing the possibility. Maybe open to having a trail of levothyroxine to see if symptoms hopefully improve somewhat - then a higher dose. If it is thyroid related - in theory once you are at the optimum dose you won't have symptoms. It is a slow process though, because Drs like you to be on a dose for 3 months, then re-test - and dose increases tend to be small.

I was lucky enough to be seeing an excellent GP, who made the diagnosis based on low T4. I don't know what the TSH was at that time, but it wasn't overly raised. I was experiencing a depressive episode at the time, but when I described my symptoms she did thyroid testing. I'm thankful that she didn't assume everything was depression related.

As And Breathe said, the symptoms have so many cross overs with multiple conditions physical health wise and mental health wise.

I hope you will be normal (ish) again too x

Hi sorry I hadn’t noticed this response until now. I really just waiting for my consultant to call me with my MODY results and then I’m going to ask him to do the thyroid stuff. I sometimes wonder if it’s just because I’m so underweight. Thanks for caring xx

 

[Leadinglights]

Thankyou so much for reaching out it’s so nice to know it’s not just me, but obviously I don’t want you to suffer too !

Its so funny you should mention gluten as my mum has cut out all gluten and said the same as you.. game changer. My diet is really restrictive and I’m not sure if I really eat any gluten ? But I will definitely look into that one. I feel like my stomach ruins my life, I don’t get headaches really but the fatigue is so bad. It like yesterday I went to a wedding reception and I have to time everything right. See if I’m hungry my tummy swells and gets uncomfortable, after I’ve eaten I’m ok for like 10 mins and then the twisting pain and bloating starts so I have to be really careful as if being diabetic isn’t enough of a pain ! One thing I have noticed is my mood is very obviously dictated by hormones, the week before period and during im so so low, I seem to pick up around ovulation time and a bit of energy comes back then it all starts again. My ovulation is getting ridiculously painful too. I will try to get to the bottom of it because I’m so fed up with it. Thanks again xx

If you are getting painful ovulation I would ask for a gynae consult as I had lower stomach pain which the GP said was probably ovulation pain but it turned out to be an ovarian cyst the size of a grapefruit.