Hi all, first time posting, I've been reading for the last . few months and read so much advice and great things so thought I'd ask for some help, I've only just learnt to ask for blood test results as mine aren't in the app yet.
I've been diagnosed with an underactive thyroid since I was 15, my mum also had an underactive thyroid and spotted the symptoms in me and thankfully didnt accept it was because I was a moody teenager. So for 20 years I've been on levothyroxine. Sorry for the long post in advance.
My results have always been up and down and always struggled to get anywhere with the doctors since I moved in 2016 (my old drs were actually great and went off how I felt), my doctors mow won't test t3 (sometimes not even t4) and are led by tsh , which I've learnt son here is quite common.
My weight had increased a lot and I felt awful, but from 2015 to 2018 I finally saw progress this was when I was moved from 75mcg to 100mcg a day and managed through healthy eating and exercising to lose nearly 3 stone. I did this by restricting calories to around 1200 and exercising, I was finally where I wanted to be just in time for wedding dress shopping.
I'd managed to keep the weight off until 2020 when they changed my dose (I don't have my blood results for this). I am unsure if theres a linko, but in November 2019 I came off the combined pill and was moved on to the ini pill due to aura migraines, and I always thought this could have impacted my thyroid, but the drs said it wasn't linked.
In March 2020 I had my yearly blood test and they lowered my dose to 75mcg saying I was on too much, I didn't question it because I didn't really understand and trusted them.
By October 2020 I felt awful, tired and all the usual signs, I rang the drs and got a blood test, which showed my TSH had increased and my T4 had dropped.
October 2020:
TSH 6.5 mU/L (0.35-5.5 mU/L)
T4 14.3 pmol/L (10-20 pmol/L)
I then had quite a few blood tests through NHS and got moved to 100mcg every 2 days and 75mcg on the 3rd day.
I had 3 more sets of blood tests, ut they are missing on the print out I got from the drs yesterday.
Roll on May 2022, I went for my yearly blood test and was text to say I needed an appointment, I assumed it was to higher it as I felt awful, but no theyw anted to lower my dose only slightly because my tsh had gone under range :
TSH:0.02 mu/l - (0.35-5.5mu/L)
T4 19.8 pmol/l - (10 -20 pmol/L)
It was lowered to alternate between 100mcg and 75mcg so not a drastic change, but I feel awful.
My symptoms are: I'm tired,sometimes need to nap at lunch time, if I go out on a Saturday I struggle for the rest of the wee with tiredness. I've gained 4kg in the 3 months since my dose was lowered (im 5ft 1 and it shows) my face is puffy, skin is hard on my feet, gained an inch around my waist, (my waist had been the same since 2017 until this dose was lowered) I've also noticed more hairs on my chin and neck, my ibs has got worse again and I'm struggling with constipation (I go 3 times a week if im lucky). I get leg cramps, and aches in my toes.
I still only eat around 1200-1400 calories a day. I do at least 10k steps a day of brisk walking with my dog. I also have stopped eating any chocolate or cake thinking it could be a sugar issue, but I still gained weight. I track everything in my app and watch.
I knew I had to have a check up blood test this month, so also ordered a private one as I have never had my T3 tested, I read the advice on here and booked one with monitor my health.
I went for the blood test yesterday, I did ask if b12 could be tested along with ferratin and full blood count and they refused and said it had to be ordered by a gp.
I also did my private one when I got back, so both done berore 9am before taking my thyroxine or any food.
I got a text from the GP today saying all good, so I rang for my results, they only tested my TSH which is now 0.42 (0.35-5.5mu/l) which doesn't surprise me.
I also got my private ones back just now (monitor my health)
TSH - 0.3 (0.27- 4.2)
T4 - 20.1 (12 - 22)
T3 4.1 (3.1-6.8)
So everything is in range, but I feel awful, I was hoping the private ones may show something I can use to push for more help, I've got a call next friday, where I'm hoping I don't get offered a health plan by a nurse again for my weight concerns.
Sorry for waffling, but can anyone give me tips re what I can say, I'm slowly starting to think it isn't my thyroid, but they refuse to test me for anything else.
My T3 looks like it could do with being higher, but unsure how to go about that.
Sorry again for the essay, but really need to know what to do next before my call next week.Thanks in advance!
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Caro719
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Thank you for replying, I did the test at 8am and private one at 8.30am didn't eat or drink after 9pm and didn't take any medication till after the tests, and my last dose of thyroxine was 7am the day before (so 25 hours before the test).
My 100mcg brand is Aristo and its quite chalky, and as you said my 75mcg is Teva, I do find they keep changing the 100mcg, but have had Aristo for at least 4 months now.
Should I tell the doctor my t3 results? I'm worried as the ranges say normal they will fob me off.
I've tried twice to ask for my vitamins to be tested and was told they didn't need to be (I haven't ever had them tested to my knowledge) nor have my antibodies ever been tested.
I've booked in with a different doctor next Friday, I just don't know what to say.
I'm just relieved you have said its a conversion issue, its why I had the t3 test done, because it's been driving me mad.
Nothing I do is making my symptoms better, so it makes sense it won't be as my t3 isn't getting what it needs.
Thank you again, honestly its such a relief to hear that it is my thyroid and not in my head.
I think I'm okay with Teva, I haven't noticed much. Aristo I'm not sure about it's very chalky.
It's a phone call, so I will tell them the results and say I really need vitamins testing as I feel its impacting my conversion of t3 and why despite my tsh being okay and my t4 being in the heigher range, the conversion to t3 is poor.
If they don't listen I'll get private tests and then hope they will listen.
I've always struggled with IBS so I try to avoid dairy bar in a cup of tea, although recently I've been having a little with cereal as I was told to have cereal to help my metabolism, but thats made no difference.
I'm on no real diet, just low calories (1200-1400) and avoid chocolate and cakes at the moment, which has made no difference.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Welcome to the forum Caro719. SlowDragon has given you great advice. I’m not surprised you have adverse symptoms as your conversion is definitely poor. I hope testing & improving vitamins helps. Do keep posting if you have further questions or need advice.
Thank you, I'm definitely going to fight to get the tests I need. Worst case I'll do private ones.
I'm juat relieved in so many ways that it is what I always thought. I only got the private tests because of this forum as I was convinced something wasn't right with my t3.
It's just I'm expecting them to say because its in range its fine.
I'm definitely not going to give up, I'm just relieved I kept the weight mainly off for my wedding seeing as I ordered the dress in 2018 and with covid etc happening!
I am eternally grateful for the help, support & advice I received from this forum. I was empowered to seek out the treatment I needed to improve my health & wellbeing. Always remember that ‘in range’ doesn’t necessarily mean ‘optimal’. Stay strong!
The accepted conversion ratio when on T4 - Levothyroxine only is said to be 1 / 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in at around 4 or under.
So to find your ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 4.90 showing conversion struggling and wide of centre.
Conversion of the T4 - a storage hormone into T3 - the active hormone that runs the body - can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D , inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing - so whilst we can't turn back time, we can try and do something about some of these.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Do you know the reason for your diagnosis of hypothyroidism - why were you put on T4 ?
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism ad was never intended to be used once the patient was taking any form of thyroid hormone replacement as then the T3 and T4 need to be run and the doses of T3 and T4 adjusted accordingly.
Currently the yearly thyroid blood test is just a TSH and sometimes a T4 which is not appropriate and the NHS do not routinely run the T3 as they are reluctant to prescribe Liothyronine due to costs rather than medical need.
A full thyroid blood panel, which includes around 10 blood tests the TSH, T3, T4 antibodies, inflammation and vitamins and minerals is the next best step so we can see exactly where you are and just stat a new post with the results and ranges and forum members will talk you through your next best steps back to better health.
Thyroid UK are the charity who support this forum and where you ca ind all things ' thyroid ' including a list of the private companies who can undertake the appropriate blood test for you.
P.S. Being ' in range ' is one thing and relatively easy to do - however being in the range where you feel well and with relief of symptoms is something totally different that very doctors seem to understand.
Thank you, I was put on T4 when I was 15, originally a starter dose of 25 after my mum saw symptoms in me that she had. She went undiagnosed for years and became quite poorly with it.
This was soon highered to 50 and then 75.
From 18 to 26 I really struggled with increased weight and keeping it off. It reached a breaking point for me when I went to the nurse and because my BMI was over 30 she was going to refuse the pill etc.
I managed to persuade the doctor to let me try 100 and with restricted my calories and joining a gym the weight finally started to come off and I got to around 63kgs from 82kgs (im 5ft 1).
I stayed on 100mcg until around Feb 2020, when I had a test and they lowered me to 75mcg and then all the problems and gradual weight gain came back.
In October 2020 I complained again and got tested and my tsh had increased so they agreed to up my dose, but they've never let me go back to 100mcg a day where I feel at my best.
I've never had my vitamins tested or an antibodies test, I've made notes for my call on Friday to ask for these as per the nhs guidelines and to explain that despite being in range it isnt optimal and the results show I'm not converting very well to t3 and am low in range.
I had suspected for some time I had issues with conversion, but the drs just ignore me. I'm speaking to a different doctor on Friday and hoping I can get somewhere.
I'm also starting to think my calories being between 1200-1400 for so long may also be impacting my conversion.
I'll post again after my call and hopefully after more bloods.
Just wanted to thank everyone for your help. I had a call this morning and the dr actually has an underactive thyroid and understood everything I was saying and my symptoms.
She also said just because you are in range doesnt mean you are okay.
Shes upped my medication to 100mcg a day and to be restested in 2 months.
Shes booked me in for a blood test on Thursday for B12, Folate, Vitamin D and Ferritin and is also testing me for ME and pre diabetes just to be sure.
I cried on the phone as I feel like I've finally been listened to, I also feel incredibly lucky to have found a dr at my practice who has it too!
Hopefully my bloods on Thursday give me the conversion answers!
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