Hello! New here and hoping for some advice from people with a bit more knowledge.Ended up having some private bloods done (was afternoon, have now seen first time in morning best) due to really struggling over the last 12 months. Under the care of a rheumatologist for inflammatory arthritis but have really been struggling with general tiredness, muscle aches, dry itchy skin, and just overall mood. I'm usually a can't sit at peace/positive kind of person so its really noticible. GP been useless last few years, so when i started losing hair/eyebrows a few months ago I decided on private tests. I have had graves disease 15ish years ago after having daughter (resolved after 2 years) and strong family history of thyroid too. Had hormones tested at same time which showed very low estrogen and testosterone, but i was on low dose combined pill.
Sent these to my GP and tried explaining my symptoms etc and i pretty much got laughed at and told this isnt unusual for someone my age?? I'm 41 - pretty sure i shoudnt be going bald and feeling this knackered. No young kids, nothing stress wise going on. I'm just very defeated now as i thought I'd found whats been causing all of this and i just got shot down. The hair loss has only really been in the last 6 months, also some strange things such as sinus problems, extremely sore/dry ears (definitely not an infection so whatevers going on has definitely ramped up in that time. GP reluctantly agreed to a repeat hormome test but as they arent concerned as it is i dont see the point. Now stopped pill and feel even worse. Great!
I am meeting my rheumatologist on Monday, so I have typed everything out including all my supplements (turmeric, pro biotic, milk thistle, perimenopause inc zinc/magnesium and B12/B6) in the hope he might listen as he was concerned last time at my lack of energy. Is there anything in particular i should be highlighting or asking for? I'm already gluten/dairy free due to stomach issues and eat a reasonably healthy diet, cut out booze. Not sure what else to do! Are my results normal? Is it in my head? Just so confused.
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weedee41
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Sorry to hear that you going through a rough patch. I had graves in 2015, had a thyroidectomy in 2018. I feel your pain. I find doctors do not really understand the thyroid condition and try to be sarcastic at best to cover their ignorance. Wishing you all the best. An endo wrote of my records depressive disorder after I was referred by my GP to be seen after my surgery. He told me I am healed and, I needed psychological input.
An Endo has no business diagnosing a mental health condition, ditto a GP. If they seriously thought you were suffering then they should have referred you to a psychiatrist for assessment. Bloody doctors do this far too often.
When they cant make you well or at least alleviate symptoms then they make out you're mentally unstable. Rather than admit their shortcomings they blame the patient. No wonder there is such distrust of the medical profession.
I feel they drive people to develop mental health issues! Funnily enough, when my thyroid was overactive i was sent off with a depression questionnaire and the bloods were done 'just as a precaution'. Madness. I'm so sorry they have treated you this way, the healthcare system is letting way too many people down.
Same experience, it took 15 years to get a diagnosis. My symptoms started in 2008, I was told it was anxiety. When my eyes popped out, diaherea and itcy skin they could not ignore me anymore although I was first told it was ulcerated colitis. The health system is a joke and since covid it is even worse.
Absolutely has, I have not seen one Dr since pre-covid times. It was a very lovely physio who pushed for my rheumatology referall after examining me and taking all my test results and family history into account. And this is really angering me as if the Dr had actually seen me they would easily see my hair loss including my lack of eyebrows. I can't even tie my hair up anymore as the left side is receeding so badly. How they can dismiss so easily over a phone call is scary 🙁 at least before you could show them these things in person. Starting to wonder what the point in having GPs actually is these days.
Totally agree with cbraffe doctors belittle patients to hide their ignorance. It's unprofessional and unkind, but that's what most of them do. And believe me, they really are ignorant about thyroid!
Did your doctor tell you you have Hashi's? Or, he would more likely have called it Autoimmune Thyroiditis. I bet he didn't! Generally, they don't understand the significance of high antibodies, but that's what it means: you have an autoimmune disease that is slowly destroying your thyroid.
But, if he looked at anything, he would have looked at the TSH - he doesn't understand the rest - and as yours is still well within range, he thinks there's nothing wrong. But he is wrong. Just being in-range is not the point. It's where within the range that the result falls that counts. And your TSH is telling us that your thyroid is struggling. Not yet hypo, but getting there.
FT4: 14.6 pmol/l (Range 11.9 - 21.6) 27.84%
FT3: 4.94 pmol/l (Range 3.1 - 6.8) 49.73%
Your thyroid hormone levels are also low. If there was nothing wrong with your thyroid, they would both be around 50% through the range, with the FT3 slightly lower than the FT4. Your FT3 is higher than your very low FT4, which is another sign that the thyroid is failing.
Unfortunately, your TSH does not correspond very well to your thyroid hormone levels, so one has to ask: what time of day did you have the blood draw for this test? TSH is highest before 9 am, then drops sharply until it's at its lowest around midday. So, we always recommend having the blood draw before 9 and before breakfast, as some foods/drinks can also lower the TSH.
So, no, your results aren't 'normal'. It's just that the problems didn't show up in this blood test - not as far as doctors are concerned, anyway. And, I really doubt you had Graves' after the birth of your daughter, you more than likely started your Hashi's at that point - which is very common. And Hashi's starts off with a false 'hyper' phase, but doctors don't know the difference and are too arrogant to do the right tests! So, the disease has been working away at your thyroid ever since.
Don't give up testing. Sooner or later things will change and you'll get results that will force even the dumbest doctor to diagnose you and put you on thyroid hormone replacement. In the meantime,
including all my supplements (turmeric, pro biotic, milk thistle, perimenopause inc zinc/magnesium and B12/B6)
we might have a little problem, here. It's good to take magnesium - most people are deficient - but zinc is a different story. As you probably know, zinc has to be balanced with copper. But hypos are usually high in one and therefore low on the other. So, ideally, you should have both tested before supplementing because taking more of the one you're already high in is not a good idea!
Nor is it a good idea to just take a couple of isolated B vits. The Bs all work togther and need to be kept balanced. So, you'd be better off taking a good B complex - and by 'good' I mean one that contains methylcobalamin (B12) and methylfolate rather than cyanocobalamin and folic acid. Thorne Basic B is a good one.
I'm already gluten/dairy free due to stomach issues
Whilst it is a good thing to try gluten and dairy-free diets, you should be aware that your stomach issues are more than likely due to low stomach acid - which most hypos have. Try googling the Burp Test and give it a go to see if your stomach acid is low. If it is, there are things you can do about that.
Thank you for this reply, i have been googling like a mad woman and confusing myself so your breakdown has really helped me make sense of it. My test was done around 1.30pm, so I think i will push for another test first thing in the morning. They havent even recorded these tests on my record so my thinking is at least that gives me a starting point with them. All the GP said was my results indicated i might end up with a thyroid problem at some point, no mention of hashi's. And very interesting point - i didn't even think of that. After 'recovering' from my graves I've steadily put on 2 and a half stone which just doesnt shift. That is something I had put down to age mind you. And it has been constant little things, like stomach issues, sinus issues, skin issues. I had never even thought of it being linked, but it absolutely makes sense.
My perimenopause supplement was an attempt to alleviate these symptoms, i was convincing myself it was just age and trying anything! Probably don't even need it to be honest after this coming to light. I didn't even know there were different types of B vitamins out there so thats very helpful, if this is highly recommended I am all for giving it a go - off to buy now but i'll get an early morning test booked before starting.
It would be a good idea to get your basic nutrients tested - they're probably low - vit D, vit B12, folate and ferritin. Post the results and ranges here and we'll help you with advice about supplementing.
Thank you, i'll look into that - I am all for trying anything to get a little bit of energy back! If GP gets funny there is a private clinic handy that does those tests, so I will definitely post back soon 😊
Be aware that if you doctor retests you, you must ask him to include the 3 tests you have recently had, TSH, FT4 and FT3. He will try to just take TSH if he can and that's not good enough.
You said your sex hormones were low? And now you have stopped the mini pill you are feeling worse? That sounds like perimenopause is doing a number on you. Hormone levels fluctuate all over the place during this phase, which can be 10 years before actual menopause so you are in the right age range.
If you continue to feel worse it's worth looking into HRT. It can help a lot at this rocky stage and some of the symptoms you have could well be down to low levels of oestrogen and testosterone.
I send everyone to read up on the balance-menopause.com web site because it's so comprehensive and up to date and because I am still a patient there and have received good HRT care. I'm just needing an annual checkup now, but still, they stopped me from feeling so miserable and hopeless.
Good luck. We have to take this into our own hands. GPs are useless for thyroid and menopause sadly.
I'll have a good look there later on, thanks for posting. I completely get I'm at that age but it really isn't right to get told just get on with it and dismissing any symptoms, nothing more infuriating. My only saving grace has been a very lovely understanding boss, he's been fantastic with me and agrees with all of my frustrations. A tired brain isn't the best for data analysis, so thank goodness I have his support. I was on a low dose combined (mini pill always made me crazy depressed/mood swings). Definitely feeling worse since stopping but it does make sense to get more accurate results so will stick with it another four weeks. I know thyroid/hormones all link in many ways so the more comprehensive resources I'm pointed to the better.
Low dose pill is progestogen only and some women will not get on well with that. It can make people crazy like anxiety through the roof and others it sends to sleep.
My symptoms got so bad the I could no longer read a book for pleasure. I could not be bothered to even try. A life long reader with no TV in the house, this was a big blow. Oestrogen returned my reading ability pretty quickly. Loss of oestrogen really screws the brain.
I didn't think it would cause too much of an issue with the results, I've never got on with progesteron only and wonder if thats why. Same as you, all the things I used to enjoy I just don't anymore. I have lovely places around me and I've always loved my dog walks but these days I do them because i need to, and feel like I'm on autopilot. Genuinely do think my hormones are massively contributing to everything going on.
Oh yes. Autopilot, live moving around you, doing things because you have too, when you used to love them. That for me was definitely low oestrogen. I had the Mirena coil, which I've always got on well with, so because it stopped my periods, I had no idea all this misery was menopause related. When I finally twigged it was so good to be able to do something about it. Now I would love to do all those favourite things again, like walking across the fields, riding a bike, swimming, gardening, decorating etc. But now it's the thyroid, or possibly thyroid/adrenal issues holding me back. At least I can do my sitting down hobbies again. But I'm so sick of sitting down.
Mention that to the GP and they automatically say depression, vicious circle with them! But yep, autopilot is exactly how life is feeling. I love cooking, baking, doing my garden and i have barely done any of that for so long. My daughters commented on it a few times (though she still hasn't offered to cook a nice Sunday roast......) It's not a nice way to feel at all. Though nice to come across someone else who loves decorating 😂 i thought i was the only one! Love a bit of home decor, and the first thing I'm doing when i start feeling better is painting my two new doors. How exciting lol!!
Yes I could get excited about painting new doors! I did, for a while, work as a painter and decorator, just locally. It was fun. But goodness you have to hold your opinions in when doing it! 😆. The worst was being asked to paint a large but low ceiling room (with beams in the ceiling) dark midnight blue. All of it. Including the ceiling. And they had a huge heavy carved dark wood 4-poster bed in there which I had to work around somehow. By the time I had the first coat on I could not see what I was doing and had to bring in flood lights!
My garden is looking very sad. Other people say it's nice, but it's not what it should be. I have some help because it's big. But the help is older than me and refuses to do a lot of what needs doing. She keeps the main flower bed and shrubs weeded. That's about it. I've just been sitting looking at the mess of the rest of it. I just have no energy at all. I've just ordered 2 roses and have no idea how I will find the energy to plant them!
Hormones control everything and for women, as our oestrogen declines so does our cognitive health and abilities. It might be time to go read up all you can about where you are in relation to this and then go and see the GP asking for what you want to "trial" and see if you can get it. If not, if you can afford it, see a private specialist. I had to do that to get the right programme for me, but then the clinic wrote to the GP and told them what they wanted me to be on and I get it all on the NHS. I can't be without my HRT. I reached the stage where I would just burst into tears for no reason. Driving the car. I was always crying in the car! And when I talked to friends and neighbours who were emigrating. I felt everyone was out to get me. It was all just a horrible time. Then there were the nightmares! I get on OK with the micronised progesterone Utrogestan so I don't have any trouble taking that either, for which I'm grateful.
I am so disappointed that you are being treated so badly.
You should not be feeling so horrible at 41 or 81 or any age!
My hubby was in the same boat as you (at 61) and GP said all ok but I suggested he go to The Thyroid Clinic which is on line and the GP who runs it has Hashimotos.
Only had one consultation and he is like a spring chicken (without the feathers as he has little hair)!
He’s just had another home blood prick test and is due another appointment next week and I think they will increase the Levothyroxine they prescribed.
Meanwhile his GP who is copied in to all correspondence is in complete denial - I just hope that none of the GPs get thyroid issues as then they would realise how poor and inadequate the NHS health care of thyroid patients is.
Hi - thank you for your reply, i think i have a private message recommending this too. Appreciate being made aware of these helpful resources. For a while i was just thinking I'm getting older, especially with the recent psoriatic arthritis diagnosis. But i eat much healthier now, cut out booze, get plenty of sleep (though recently thats not been great) - i should not be this 'tired'. When i said that to my GP i was met with silence, they really don't care. I used to enjoy my beach walks with my dog, i still do them but it's not enjoyable and my legs always feel sore and heavy. Grrrr!Great news that your hubby is more positive about things and finally looking likely to be getting treatment, he must be so relieved someone is finally listening 😊 peoples health and mental wellbeing isn't for playing with.
I listen to what my GP has to say but check it out myself.
I assumed I was getting arthritis as I had swelling finger joints, thumbs and wrists -extremely painful. GP saw it as an inevitable sign of getting older.
But 18 months later, all cleared up! No knobbly joints, no pain, functional hands again! And they look good! Can even get my ring on now!
So listen with a punch of salt, once in a while there is a useful observation - but knowing the GPs are driven by policy and funding limits puts things into perspective. We need to look outside the NHS because we are worth it!
I am starting to think along these lines too, although there is a strong family history, what if the 'arthritis' is actually caused by a dodgy thyroid?? My pain is definitely worse now along with the more obvious thyroid symptoms. I could be getting pushed towards pain relief i don't actually need. I don't mind the physio, stretching and exercise is always good but i would be delighted to not have to take pain meds every morning just to move.Feel like in my head I'm making the decision to take action myself regardless of what nhs say, just need to get my tests out of them and get on the road to feeling better!
I think it’s important to try to work with the NHS but as in informed patient who has evidence to support and control the pre overt pathway. My GP has openly admitted I am the first PA patient he has come across in 12 years so has “no experience” which I find hard to comprehend as I didn’t think PA was that uncommon.
I keep my GP informed by letter about what I am doing for self treatment and the improvement in my health - results are starting to show and I sense I am being taken a little more seriously now. Irrespective I still never get a reply or acknowledgment of my letters! But they are on my records.
Just to give you hope, I hadn't had eyebrows for over 8 years and the shower plug needed cleaning almost once a week my hairloss was so constant. Have finally got ( thanks to the help of this forum) a raise in thyroxine and after a year I have eyebrows a better head of hair stronger nails and a clean plug hole in the shower. One STEP at a time, there is light at the end of the tunnel.
I feel my loss has really ramped up recently, always had loads of hair/thick eyebrows so to me its really noticible - my eyebrows are now thin straight lines and look ridiculous. Never really been self conscious before, but getting there.I am expecting a huge battle here, but it has been a relief to find i am absolutely not the only one feeling this way. I am just gobsmacked at how many people are being dismissed so easily with symptoms. The only thing i am feeling optimistic about is finding this forum to help support me on this journey, I will feel better with or without their help ❤️
Hair loss is often due to low ferritin, but can obviously be low thyroid, plus hair loss can be a sign of low female hormones, are you peri menopausal by any chance?
It can be hard to pin down the cause as when we get to our 40's a lot of stuff is going on hormonally, its pre or actual menopause time and thats often when our thyroid decides to pack up. Getting your B12, iron, folate and vitamin D to optimal levels is really important.
My hormone levels were very out of range to me, but as my FSH and LH were in range they said nothing wrong which i just don't believe. These were my other results on day 6 of cycle:
6.97 pg/ml estradiol (20>)
0.122 nmol/l testosterone (0.29>1.69)
134.00 nmol/l SHBH (32.4>128)
0.09% Free Androgen (<0.3 low)
I have been on a low dose pill, so I've stopped that so i can be re-tested but if they think above is ok then they definitely wont do anything anyway.
Completely understand this is an age our hormones go haywire, but its your age get on with it is bloody infuriating when you just want to feel semi-human 😐
I'm going to chance my luck tomorrow for the vitamin tests, added to my list of notes I've prepared for my appointment.
Oh God, yeah, your age is just an excuse because they dont know what's wrong and cant or wont treat you even if they did. Hormones are treated very poorly by the medical profession. Its quite scary when you realise you are on your Todd.
Great advice already given above. I just wanted to say as your thyroid antibodies are so elevated you might benefit from reading ‘The Root Cause’ by Isabella Wentz.
She explains the significance of thyroid antibodies and how damaging the accompanying inflammation can be. You might find if you can reduce thyroid antibody levels, all these seemingly unrelated symptoms start improving.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Feel as if I am on my own.
Don't feel well but doctor says I am fine. Is she right?
Feel like I am suffering
Still feel hypothyroid, am feeling down. 
Test Results normal but I feel awful
