I have recently joined this forum and have already benefited greatly from the wealth of information provided and supportive posts etc so thank you all for your contributions!Brief history...I'm a 49 year old female diagnosed with "Acquired Hypothyroidism" around 24 years ago whilst pregnant with my daughter. As appears standard practice here in the UK I was immediately put on Levothyroxine and have only ever had my TSH and T4 tested. I have no idea whether my blood results at the time indicated pregnancy related/post-partum thyroiditis or Hashimoto's disease and my current GP does not have any records dating that far back so is unable to confirm the reason fo my diagnosis or even what the nature of my thyroid condition actually is. Whether my thyroid would have settled down in due course is something I will never know, sadly.
Alongside Hypothyroidism I have a diagnosis of Primary Biliary Cholangitis (03/2012), Raynaud's syndrome (07/2013) and a Vitamin D deficiency (03/2016) now stabilised with supplements. I also tend to have LOW blood pressure and am post menopausal.
Despite my thyroid tests regularly showing within "normal range" I have remained symptomatic over the years with regular GP visits complaining of feeling tired all the time, depressed, anxious, stressed etc etc. I haven't worked in a few years now due to these debilitating and fluctuating symptoms and have always felt that life is a constant "struggle" and becoming increasingly so with age.
Examples of my test results over recent years are:-
* 06/22 Serum Free T4 -18pmol/L ("Normal")
TSH -0.04mU/L ("Abnormal")
* 08/22 Serum Free T4 -16 pmol/L ("Normal")
TSH -0.08mU/L ("Abnormal")
In November 2022 my GP informed me that I'm being overmedicated on 125mcg and reduced the dose to 100mcg. When tested in Jan 2023 I was deemed to be on the "correct dose" and told to "continue as prescribed".
It was at this point that I began to research Hypothyroidism and its standard testing/treatment here in the UK and like many people on here was quite horrified to discover how inadequate it can be for many people who continue to suffer the ongoing debilitating symptoms whilst being told levels are "normal" and "within range". Furthermore as I now know is very typical, dangerously so, I have acquired quite a collection of mental health "diagnoses" in my search to explain away my struggles with severe mood disturbance, lethargy, low mood, foggy thinking, poor concentration etc etc. I decided to get back to basics to unpick the tangled mess my "health" record had become and focus on my thyroid as the possible root cause of most, if not all, of my ongoing health issues.
I made the decision to stop taking my Levothyroxine on 17/06/23 and 4 weeks later I took an Advanced Thyroid Function Blood Test with Medichecks, at 9.30am in a fasted state to see how my body performs without synthetic T4 in my system. The doctor at Medichecks phoned me directly to inform me that I am "significantly hypothyroid" and must contact my GP "urgently"
My results were:-
* TSH:- > 100 mIU/L ("Extremely High")
* Free T3:- 0.9 pmol/L ("Low")
* Free Thyroxine:- 2.9 pmol/L ("Very Low")
Vitamin B12 was in range but low (51.2 pmol/L) and the Medichecks doctor suggested an MMA blood test. My Folate was also towards the lower end of normal (10.9 nmol/L). She also noted that my blood pressure is towards the LOW end of normal and asked if that is normal for me. As it IS she noted that this could indicate LONGSTANDING "severely underactive thyroid glands" which can cause a drop in blood pressure and heart rate.
It was also suggested I check my female hormones (fsh, luteinising hormone, oestradiol) as well as a morning prolactin.
She stated on the written report that it was important I receive thyroid replacement and that "conventional thyroid replacement is Levothyroxine". When I spoke to the doctor and explained how I wanted to take the test without Levothyroxine in my system she advised me to resume my dose (I restarted on 21/07/23) and retake the test alongside their "Advanced Well Woman Blood Test" which looks at vitamins, minerals, hormones as well as thyroid in 4-6 weeks time. I have already purchased both tests and plan on being tested in 6 weeks.
For anyone interested my Autoimmunity tested as follows:-
Inflammation, Ferritin and Vitamin D all fine/within range.
I know that many people may consider dramatically stopping Levothyroxine without doctors advice to be rash and potentially dangerous but the Medichecks doctor did say that it made sense to her why I chose to go down that route and that once back on my prescribed dose (I restarted the very next day) a retest would prove useful in 4-6 weeks time to see how my body functions on it (I firmly believe that I do not convert to T3 well - possibly due to my Liver condition) and that 24 years on synthetic T4 with only my TSH and T4 ever being checked together with the inadequate "normal" rather that "optimal" ranges used, it is little wonder I've always been symptomatic. Together with low blood pressure this has taken a toll on my "mental" as well as physical health and ability to function optimally. I am a healthy BMI, eat well and exercise daily so in all other respects I am relatively fit and active.
Prior to taking this course of action and speaking at length to my GP about my ongoing and worsening hypothyroid symptoms she made a referral for me to see an Endocrinologist but did warn me that it could take some time for the appointment to come through. What does concern me is that after spending money on private tests if it us suggested that in change brands or incorporate T3 into my regimen or try a natural form etc this wont be readily available on the NHS. Hopefully if this is the case my Endocrinologist will be able to prescribe....
Apologies for writing the "War and Peace" edition of thyroid struggles! And insight/ reflections/advice would be GREATLY appreciated 🙏🤗
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Newmorningmercies
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Thank you so much for you kind reply and advice. Yes all of what you suggest will be retested in 6 weeks time now I'm back on 100mcg Levo although I've noted that my GP has prescribed me a different brand ti the one I usually take.
When I had the Medichecks test it was after fasting and early morning but over the 24 years of being treated for hypothyroidism by my doctor's it was never once suggested that I needed to be tested early morning and so many hours after my last dose and food etc. Never ever mentioned. Quite shocking really. I've only discovered all of this in recent weeks by doing hours of research and being in this forum.
No I've never tried either diary or gluten free but it may well be worth me getting tested in case I am intolerant. Thank you for suggesting.
I've never heard of dio2. I'll look that up and yes I absolutely do want my cortisol/adrenals tested. I recall years ago reading a very good book on adrenal fatigue called "tired and wired". I've no doubt my cortisol levels and adrenals are off the charts after so much time being poorly tested and mistreated under the NHS. I'm just so glad the penny dropped and I decided to spend the money and go private. Best money I've ever spent and would highly recommend Medichecks.
I do believe I may need a combo of T4/T3 but as I've stated in my post I've never been told if I have Hashimoto's, simply "acquired hypothyroidism" and then only ever been prescribed Levo on the basis of my TSH and T4 test results against the "normal" range. I'm convinced I have never converted to T3 (maybe due to my underlying Liver condition) but rather than relate my ongoing symptoms to my thyroid I have just gone on to accumulate quite a collection of mental health diagnoses which I've since learnt is VERY common. A classic case of Polypharmacy in action. Fortunately I've only ever taken the associated meds for limited periods of time as it's never felt right to me. Now I know why.
I'm sure my levels have not gone haywire in the 4 weeks since stopping the Levi but that finally I've had a full blood panel that have picked up on my ongoing and worsening ill health. Will be interesting to see what the tests say in 6 weeks time and I'm praying the Endo referral gets actioned quickly. The less reliance on the NHS the better.
Thank you again. It's soappreciated and really does help me to feel less alone in this uphill struggle we all face
Thank you so much for all of your help and support. It is so appreciated!I have booked in with Medichecks for a retest of my Thyroid (a FULL blood panel) in 6 weeks time now that I am back on 100mcg Levothyroxine so that I can compare both sets of results (the first test was 4vweeks after stopping my meds) and showed my thyroid to be dangerously underactive as already shared. I will also be having their Advanced Well Woman Test to test for vitamins, minerals and hormones etc (on the advice of the Medichecks doctor who phoned me re my results).
I was taking the Accord brand of Levo but when I requested my tablets (after my 4 week break) I was prescribed the brand MercuryPharma. When I raised this with my GP she seemed nonplussed!
I take a vitamin D supplement as was diagnosed with a very low level back in 2016 and have recently started to take vitamin B12 (on the advice of Medichecks as their test showed I have low levels).
I am neither gluten of dairy free but am now interested to discover if I am intolerant/sensitive to these having joined this forum and read of people's experiences. It's something I've never considered before.
So very grateful to you and this forum. You have given me more useful and accurate information that my doctor's have over 24years!! Sadly it also pays to go private which is clearly the direction we're heading in the UK. Where I live a small private practice has opened on my high street and I have heard that GP's from 2 of the local GP surgeries have already relocated there. Interesting...
Your story is not dissimilar to many/most here. Left undiagnosed or diagnosed but mismanaged for years and years, accumulating one serious condition after another along the way.
The chances are you need combo therapy to regain wellbeing. There is a list held by Thyroid UK (a charity who fund this forum) of sympathetic endos whom members have received good experiences with. Most are private but there are a few NHS I believe. If you want recommendations, we can't discuss endos on the open forum but you can post a request for answers by DM if you wish.
The Advanced Well Women Check is an excellent all rounder test. I have one once a year as it checks everything all in one go. Ask at your GP’s surgery if they will draw the blood as it benefits them too if you share the results. My surgery does this for me now.
Also you can save 10% off total cost if you use code THYROIDUK10. This discount is again supplied by Thyroid UK (see link below). Mine was reduced to about £127.00.
Then share the results here, complete with ranges (numbers in brackets) for members to comment. There's about 50 biomarkers so either just include thyroid and vits/iron, or use the 'printable results report' which lists the whole caboodle and you can take photographs to upload here if you can't be bothered to type them all out.
Thank you so much for your thoughtful and helpful reply. It's much appreciated.Our gut instinct is a wonderful thing isn't it? It's taking me 24 years but I've learnt so much recently and feel very empowered in taking full control and responsibility for my own health and wellbeing. The last 4 years have really taught many of us to not automatically place all our trust in doctors who are called GENERAL practitioners for a reason! I do believe that with a thyroid diagnosis we should automatically be referred to an endocrinologist just as I was referred to a Liver specialist when I received my PBC diagnosis. It would prevent years of suffering wouldn't it?
You're spot on in suggesting I need a combo of T3/T4 as I don't believe I've ever been able to convert T4 by taking Levo alone. I would love recommendations. Thank you! My GP has now referred me to an Endocrinologist but warned me that it could take a while. Should I message you directly or someone else?
It was the doctor at Medichecks who called me and recommended I retest together with the Well Woman Test and I didn't hesitate. It's good to hear you've had a good experience with it. Thank you! Very reassuring.
I will share a picture of the full results next time. I don't know why I didn't before. Brain fog most likely 😅
This forum is so informative and supportive. It's so good to know you're not the only one as this constant battle to feel well can literally make you feel like you're going insane. I feel that many GP's have become very skilled in gaslighting people into believing it's all in their head as well as who are we to question their "expertise" etc. From now on I'll be questioning everything and not settling for anything less than optimal health. Thanks again 😊
You can either put a post out requesting for endo recommendations in your area, or you can chose and name an endo in a post asking members to give their experiences. Answers will be given by DM only.
Welcome to the forum and sorry to hear of your struggles. There are wonderful experienced people, who will help you like the amazing slowdragon.
I am newish. Surprised that a month without levo gave such a dramatic drop off. Perhaps the time since January already started you being under medicated ?
I am less than a year in but my Mum has underactive thyroid, for about as long as you. We both cannot tolerate any gluten.
It gives many of same symptoms as low thyroid. Mine did not show on coeliac blood tests. I learned on here that this it is quite frequent. Gluten intolerance. I recently was accidentally glutened and had a week or so of brain fog, fatigue and feeling crap.
My TSH was 79 in October when I found out last year and I remember how bad I felt.
OK ish now. Levo is such a slow thing, taking weeks and weeks to settle and to feel better.
Do you take levo 1 or 2 hours before any other food or meds or coffee? Mum had forgotten this bit.
Thank you so much for your kind and helpful reply 🤗
You're absolutely right. I don't believe for a second that 4 weeks off Levo has affected me to this extent. I believe it's more to do with the fact that I've had a full and robust test for the first time since my diagnosis 24 years ago. It certainly explains why I haven't felt well in all that time despite being told all is within "normal" range.
Thank you for suggesting gluten. It's definitely something I will look into. Did you get tested for food allergies? Diary has also been suggested.
Yes I've always (pretty much) taken my levo well before eating and coffee but I'm now going to start taking it at night 4 hours after food and caffeine as I've read there is evidence that it may be better absorbed for several reasons (slower peristalsis of the bowels etc). Worth a try!
Be kind to yourself too and thank you again. Best of luck on your health journey 🙏
I stopped gluten a year before finding out i was hashi/autoimmune low thyroid.It seems my body sees gluten the same as thyroid tissue and attacks it. It seems many others are like this too.
Once you are level on levo again, you're T3 reading will indicate if you are converting T4 to T3. You seem to be getting good T4 levels and maybe you are a poor converter?
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