Hi, I know I only posted my results recently, but when I saw the GP, it was a different one than last time, as the original didn’t have any appointments and I needed to see someone sooner for another reason.
The upshot of my consult was that I ended up in tears begging to be treated as an individual, a patient rather than a set of numbers. And although she kept saying, ‘we do, we do’ they really bloody don’t as she wasn’t interested, I didn’t have my bloods on me to go through them but even going on the ones they did have on file, it was clear that I need a Levo dose increase, that my B12 and folate had dropped, and that I needed a higher dose of Vit D! I asked her to check the NICE guidelines, BNF, BMJ and The TUK website, I even read from some of them, but she still refused to do anything, just kept saying, that she would send me to a neurologist for my neurological symptoms!! When I queried why, she said, ‘isn’t that what you want me to do though!?’
Well actually no! I’d like you to take some bloody responsibility for your decisions and treat my symptoms! They may be neurological in nature but I can guarantee they will go if I’m given the right medication!
She said I can’t do that! I’ll send you to the neurologist!
Oh wow I almost screamed at her!! Instead, I just said ‘Hate to tell you how to tell you how to do your job, but it’s not a neurologist I need, it’s a haematologist if you need to check whether I need B12 injections!’
‘Ok, I’ll do that then! Thanks for coming in, Mrs E!’ 🤯🤯😡
I felt so upset and let down that I came out crying. I went and asked for a meeting with the practice manager, which I had the following day- now that didn’t go well either. I went in armed with all my research from you guys, articles from various websites, The BMJ, BNF and NICE Guidelines. My lab results since April. I asked for a clinician to be present so that they would understand it all, as long as it wasn’t the same one I’d seen the day before. Again, I had the same attitude (I expected this doctor to be a little more open as she was younger!) at least this one had the good grace to admit that the local guidelines are different to national guidelines and therefore can be confusing and could be the reason why some doctors won’t treat patients like myself. And she also admitted that she was out of her comfort zone and that she was going to write to the haematologist and the endocrinologist with all my lab results from the last few months and would get back to me ASAP. But she still wouldn’t be treating me for my symptoms as they can be misleading because we all feel tired and run down and you have fibromyalgia and Addisons so you’re going to feel crappy in the heat we’ve had recently.
Actually it’s not the heat that’s causing me to overheat, I am just unable to control my body temp! It’s not like it’s normal to wear shorts and T-shirt’s when it’s only 9 degrees outside, now is it!
Before I left she said she would do a blood test for intrinsic factor (I think I’ve got that right- bloody cognitive issues are really getting me down lately as we’ve all (hubby and 6 kids!) have noticed they’ve gotten worse!) so I asked for FBC’s to also be done, along with, folate, ferritin and iron. Can’t remember if I asked for my B12 to be repeated but that’s not long been done so I doubt they would’ve anyway. This was Friday, I had a phone call Monday to say they’d come back (early) and my folate was low and she had done me a script for folic acid.
I think there are 2 decent doctors here that I’ve met so far. Can’t make up my mind about this one from Friday yet as at least she seems to be doing something.
(Recently transferred!) and if it wasn’t for the fact that it was a merger and a change in how they do appointments that made me transfer, I’d never have left my old surgery as they were fantastic!!
Now I feel shite, I have a list of symptoms longer than my arm, I’m starting to feel like a hypochondriac, they’ve been putting things down to my Fibro for years and years!! I feel like I’m being be fobbed off all the time and I’m sick of it!!
I have some blood test results from the last couple of months, last time I posted results though, no one answered me for some time and then I only had one reply I believe, I do apologise for the length of my post, it wasn’t meant to be an essay, i didn’t think I even had the energy to post anything but when I started typing, it just flowed and I just had to get it all out, I’m sorry. Thank you for reading this far, I’ll post my results if anyone would be interested in giving me some advice.
Thank you x
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Your not alone hun, I’m sick of not knowing what to do for the best,,,,,,,every one says something different, you really don’t need it when you feel like you’re loosing the plot, it feels like guess work, and I feel like a hypochondriac, it’s crap
But it is guess-work. There are no hard and fast rules. You have to find what works for you. People respond by telling you what worked for them, but that doesn't mean it will work for you. Doctors have fixed ideas about what to do and look how well that works out! We, on here, tend to suggest a trial and error approach - try this, see if it helps, if not try this, etc. Nobody can tell you with any certainty what you're supposed to do.
greygoose, I guess you’re right, when you put it like that. This is why I love reading this forum, even if it is someone else’s post, I have still gotten ideas from you much more experienced ladies, and tried them. Such as the D3 spray by better you. And then by reading yet another post, I realised I need Vit k2 for it to work correctly, so today I went and bought the better you D+K2 oral spray and I’ll be starting that tomorrow. The D3 is the same amount as the other one I was taking, so that bit shouldn’t be affected.
I’ve also taken SeasideSusie’s advice and bought other vitamins, and in the hope that I can bypass my absorption issues, and on the premise that they all work in the same way, I have bought the BetterYou oral supplements for B12, and iron too!
I’m still looking for a Folate, so if anyone has any recommendations for that, I’d be happy to have them! I know my GP has prescribed me Folic Acid, but again from you lovely lot on here, I’ve learned it’s not a good replacement for Folate??
Again thank you for reading and replying, I appreciate it xx
Well, just taking b12 and folate isn't a good idea because the Bs all work together, and need to be kept balanced. So, rather than just buy folate, get a B complex with methylfolate. Igennus do a good one.
I think that’s one of the ones that SlowDragon recommended. I think I may have ordered the other one that she recommended though, had to get it online as I couldn’t find it in the health shops in town! Will that still have it in, I’ll have to check the ingredients list.
I didn’t know about vit K2 to work along Side vit D. Iv just order Vit B complex and oral spray betteryou vit D now it seems I’ll have to wait for amazon to send K2 for it to work properly. Damn..
It's not that the vit K2 makes the vit D work properly, it's just that taking vit D increases your absorption of calcium from food. So, you need the vit K2 to make sure that extra calcium goes into the teeth and bones, and doesn't build up in the soft tissues. So, you can still start taking the Vit D while you're waiting. A few days won't hurt.
Hi funnily enough the b complex, vit D and K2 better you all came yesterday Saturday so hopefully I will be feeling like a new woman soon. Thanks guys for the advice.
It is crap isn’t it hun, glad I’m not the only one that feels like a hypo (-chondriac that is lol!)
I can relate to the feeling of losing the damn plot too! I don’t even drive further than my kids school anymore (literally a 2 minute drive away!) I get lost, I take the wrong turnings, drive home......... to my old house!! The kids used to think that it was funny, not so much anymore as it’s just getting worse and been going on for so long!) so now I don’t drive anywhere unless I have someone in the car with me! Which is infuriating as it’s my only bit of remaining independence and I feel like that is being slowly taken from me too!! 😢🥺
Went to get in my car today. Haven’t used it for a month . I park it on the main road as I have no car space. Where it had been there for so long, without use, the trees above it had dropped all there pollen pods and I had to scoop it all off . As when I opened windows it fell in 😂. I am not going to lose that independence. Took me till I was 47 too pass my test. 🙄 I’m 60 now. Hang on to your independence. fibromyalgia Has many faces. It’s not just about pain I am discovering. 👀🤔
Please remember that this is a very busy forum. It has over 100,000 registered members, and the number of currently active members is over 12,000. It just depends on who is around at the time the post appears as to whether you get a reply quickly, some time later, and they can even get missed as posts move off the main page very quickly at times.
Admin SlowDragon replied to that post and gave a comprehensive interpretation of your results. If anyone else who can interpret results had replied, they would have said the same so sometimes there's no point in someone else repeating the same information, so they move on to help someone else.
However, you didn't answer the questions that SlowDragon asked in her reply which related to the dose of Levo you are on and whether your hypothyroidism is being managed by an endocrinologist in the light of the fact that you have Addisons.
If you have some new results to post then please do add them for comment.
Oh SeasideSusie, I do apologise, I really am so sorry, I really did reply to SlowDragon, but I have no idea where the reply has gone!! Well that’s a pain and no wonder I didn’t have any further response!! I appreciate how busy the forums are, and that’s what makes them so good. It’s just I see others posting results and people discussing them, I just thought I’d have a little more input. I do appreciate SlowDragons reply though as it is so detailed and comprehensive.
In answer to those questions- yes I am still only on 25mg of Levo, and I’ve tried everything to get the GP’s at my new practice to increase it, but they refuse to because they would only test my TSH up to now and that was in range and suppressed!
In the three years since I’ve been diagnosed Hypo, I’ve never once been to or had the offer of being seen by an endo regarding it. In the 18 months since being diagnosed with Addisons, I’ve seen two Endos, both of them on one occasion each!
Unfortunately I can’t eat prawns or other shellfish, and I can’t stand liver, liver pâté (or any pâté tbh!) or black pudding. I used to love dark savoy cabbage and broccoli but now I can’t eat them as my stomach just balloons and is so uncomfortable, just like when I eat gluten (I’m not totally gf, but I’d say I’m 95-98% gf) I can tolerate small amounts of green beans, asparagus and spinach though, just not very often!
I do have the more recent results, I’m just wondering if it’s worth typing them all in, in date order rather than anyone who is interested in reading and replying, having to bounce back and forth through my previous posts as I know myself how tiresome and time consuming that can be?
Ok so here goes with my results- hope I do this correctly now ......
DOCTORS- 10/04/19
HbA1c 34mmol/L range <48mmol/L
TSH 0.36 mU/L range 0.30-4.4 mU/L
Plasma glucose 5.1mmol/L range 3.00-7.70mmol/L
Serum Urate 256umol/L range 140-360umol/L
Sodium 141mmol/L range 133-146mmol/L
Potassium 4.6mmol/L range 3.50-5.30mmol/L
Creatinine 68umol/L range 46-92umol/L
GFR calculated abbreviatd MDRD 84ml/min/1.73m2 (don’t have a clue what this is- does anyone!??)
Total white cell count 6.5 10*9/L range 4.00-11.00 10*9/L
Haemoglobin estimation 129g/L range 115-165g/L
Platelet count 261 10*9/L range 150-400 10*9/L
Red blood cell (RBC) count 4.88 10*12/L range 3.80-5.50 10*12/L
Haematocrit 0.42 L/L range 0.37-0.47 L/L
MCV 86fL range 80-100fL
MCH 26.4pg range 27-33pg
RBC distribution width 15.6% range 11-14.80%
Neutrophil count 4.4 10*9/L range 1.70-7.50 10*9/L
Lymphocyte count 1.2 10*9/L range 1.00-4.50 10*9/L
Monocyte count 0.7 10*9/L range 0.20-0.80 10*9/L
DOCTORS- 12/06/19
Se TPOAb 6 U/ml range <6.00 U/ml
Serum TSH 0.63 mU/l range 0.3-4.4
Serum Electrolytes-
Sodium 143 mmol/L range 133-146
Potassium 5.3 mmol/L range 3.5-5.3
Creatinine 68 umol/L range 46-92
GFR calculated abbreviated MDRD 84 ml/min/1.73m2
Serum Ferritin 20 ug/L range 15-300
25OH Vit D 67 nmol/L
Serum Folate 4.2 ug/L range >3.00
Vitamin B12 349 ng/L range 180-900
MEDICHECKS- 08/07/19
CRP HS 1.05mg/L range <5mg/L
Ferritin 29.1ug/L range 13-150ug/L
Folate 2.47ug/L range >3.89ug/L
B12 (active) 111.00pmol/L range 37.5-188pmol/L
Vit D 66nmol/L range 50-175nmol/L
TSH 1.39mlU/L range 0.27-4.2mlU/L
FT3 3.83pmol/L range 3.1-6.8pmol/L
FT4 13.400pmol/L range 12-22pmol/L
TGAb 151.000kU/L range <115kU/L
TPOAb <9klU/L range <34klU/L
DOCTORS 12/07/19
Ferritin 15ug/L range 15.00-300.00ug/L
Folate 2.6ug/L range >3.00ug/L
Total white cell count 5.4 10*9/L range 4.00-11.00 10*9/L
Haemoglobin estimation 122g/L range 115-165g/L
Platelet count 202 10*9/L range 150-400 10*9/L
Red blood cell (RBC) count 4.51 10*12/L range 3.80-5.50 10*12/L
Haematocrit 0.40L/L range 0.37-0.47 L/L
MCV 89fL range 80-100fL
MCH 27.1pg range 27-33pg
RBC distribution width 15.2% range 11-14.80%
Neutrophil count 2.9 10*9/L range 1.70-7.50 10*9/L
Lymphocyte count 1.7 10*9/L range 1.00-4.50 10*9/L
Monocyte count 0.6 10*9/L range 0.20-0.80 10*9/L
What I didn’t realise at the time of the first two doctors tests and the medichecks test was that I should’ve stopped my supplements a week or so before my blood draw.
Before then I was still supplementing with my oral sprays for D3 (3000IU + my prescribed daily dose of 1600IU) And the B12Boost 1200mg (funny m symbol, sorry don’t know how to represent that on here 🤷🏻♀️)
And because I had no warning of the latest blood test, I only managed to miss one dose of Levo 25mg (14hours before) and my evening dose of D3, I stopped my B12 spray after my medichecks test was done (before results) because I happened to be advised that if I was hoping to get a B12 deficiency test or whatever, then I shouldn’t take it as it skews the results!
Please analyse away! Many thanks for reading them!! Hope they make sense to someone xx
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Do you know the reason why you gave Addison's? Wondering if it's a pituitary issue.....your TSH is suppressed on extremely low dose Levothyroxine. Suspect this is CENTRAL HYPOTHYROIDISM...and you should be seen and treated by thyroid specialist endocrinologist
I’m in South Wales, Cwmbran (Nr Newport) I’ve just discovered (researching at 2am has its advantages!) that an endocrinologist named Dr Pete Taylor has a specialist thyroid clinic at the University of Wales Hospital in Cardiff, he takes referrals from all over and is an NHS consultant. I’m going to see if I can get a referral to him rather than the eejit I’m seeing at the moment.
I’ve just asked to have a copy of my medical records too, she did try charging me £50 but I queried it, she checked and it turns out I don’t have to pay it, just a consent letter.
Addisons they came back with because my levels are <27nmol/L even after the short synacthen test!
No problems with my pituitary, I’ve had the detailed MRI which showed no tumours. And my ACTH levels are fine. 🤷🏻♀️
I have trouble controlling my body temperature as well, I'm either sweating or freezing cold no matter what the weather. I know it isn't the menopause because I went through that years ago. This horrible disease has effected my body in so many ways I don't think I will ever be well again.
I’m never cold anymore, even though I used to be a freezer, and was always wrapped up in jumpers and thick coats, these days I’m lucky to wear trousers let alone a jumper!! It’s a running joke within my circle of friends and family- you know it’s cold when Shelley has a jumper on!! And it must be freezing if she has a coat on!! 😂🤷🏻♀️
Hi your symptoms sound very similar to mine. Do you have any dryness in eyes, mouth and/or vagina ??
I have Hashimoto’s and that was just about being controlled after I went 10000% gluten free, but I then got really sick again and was subsequently diagnosed with the main problem/disease by a neurologist who ran the biggest list of blood tests I’ve ever seen - 2 pages of A4 !! I was then diagnosed with Small Fiber Neuropathy as a complication of Sjogren’s Syndrome.
Don’t give up, you have to be your own advocate and that’s so hard when you are sick.
I took my hubby to my last Endocrinologist’s appointment to add some gravitas!!
We regularly recommend taking supportive friend or family member along as witness to consultation. They don't need to say anything. Just watch and listen
Looking at your results you posted last time your T3 looked on the low side. You mention you take 25mcg Levothyroxine. Looks like you may need T3?? I didn’t see T4 results??
I know that quicksand feeling oh so well. I was tested for Addison’s twice last year. I passed both synacthen tests just. My cortisol got down to 68! I’ve recently been diagnosed as not converting very well T4 to T3. I’ve now got the T3 medication and my life has completely turned around. As well as correcting my thyroid levels. It has significantly helped my adrenals. After a month my cortisol went up to 311. After a further month it went up to 450. All tests done at 9am. I’d not had such high cortisol results in years. The T3 medication has definitely helped me. I know you have Addison’s and I don’t but maybe just maybe T3 could help you. Are you on hydrocortisone? Do your doses need increasing or timing differently? What was your cortisol figure recently. Taking thyroid medication and adrenal issues can be tricky. They have to be balanced.
I also was referred to a neurologist by an Endocrinologist. Neurologist found nothing wrong with. In fact I saw 3 and all 3 found no neurological issues. I needed T3 and the original Endocrinologist knew that as bloods was obvious. He just didn’t want to burden the cost on the NHS. Terrible. I went private and also did the DIO2 gene test which came back positive. I just needed T3. It fixed everything for me including my adrenals.
Regenerus Laboratories. Thyroid UK home page has a link. Or you can just google them. If you decide to do it then put Thyroid UK as the practitioner. It’s all private.
Counselling is compulsory to discuss implications of results
To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.
The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.
The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.
This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.
Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.
i really sympathize with you regards to getting the NHS to listen to you.
i feel as if they have the power over my life. Every step of the way i have to battle and argue with all of them. it does not matter if its the Doctor or endo they just seem to disagree and fob you off. the last Doctor i saw was in his 30s and after i sat down and spoke to him he asked me about my eyebrows (tattooed on ) and actually said "they look weird"
i did not have any make up on at the time but even so ! i explained that it was a very sore subject for me as i had lovely thick eyebrows and it was a symptom of under active thyroid which was finally treated after 2 years of blood tests screaming out that i had under active thyroid. mu joints ached so much i could not get out of bed in the end and a new Doctor told me this should have been picked up at least 18 months ago.
After this explanation the Doctor said "he never heard of thyroid hair/eyebrow problems
and as soon as i walked in his surgery he noticed something weird"
when i got my blood results it stated very high antibodies but this Doctor replied to me when i queried it (only from the knowledge i got from greygoose) that nothing can be done about the antibodies and i just have to accept i will allways be over weight.
sorry this reply turned out to be about me
i just want you to know that i really understand your frustration and i hope things get better for you. a positive note is that you have the wisdom and courage to question and demand answers from them. Hope you feel better every day
I’ve had the list from Dionne, I don’t think he was on there but I will double check again.
And I will have a look at the article too, might be a good idea for me to print out and take with me next time!!
Hi LuluCops. I was amazed to read your post, as I have just ten minutes ago left a doctors appointment , feeling just the same as you do. I went with extreme anxiety and depression and felt like I was just a number. I have fibromyalgia, hyperthyroidism and heart problems and other stuff, but this was causing me a lot of upset . She hmmmed and ahhhed through me talking and I asked what last blood results were. Turns out the ones I had 3 MONTHS ago were abnormal. No one had contacted me or anything. So was given something for a bladder infection and my time was up. No help on the anxiety side 😤 felt I was not listened too. Treating a bladder infection is apparently easier than looking at anything not physically apparent. I hope you get the help you need soon. I think our doctors are as confused as we are sometimes. 🙄. Sending healing hug
Make another appointment with GP to discuss thyroid problems
But first get the actual test results and ranges and bring them here for members advise on a new post
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Sounds more like Hashimoto's (hypothyroid) ....very common with fibromyalgia and anxiety and depression are extremely common too
Early stage Hashimoto's is often misdiagnosed as hyperthyroid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Thanku so much for your reply SlowDragon. I don’t post often, but I like to reply to others when I can. I am sixty now and I did have Hashimoto when I was about twenty. I wasn’t told this. I just found it out when I asked for some other results to be printed. I had all but an eighth of my thyroid removed when I was 28. And the poor little thing still struggles. I take 125 of levo. I’ve had radioactive iodine treatment, carbimazole and now they say it’s stable. I asked at docs yesterday could my thyroid be causing my depression etc and she literally dismissed it. I apparently have to ring to refer myself to the endocrinologist today as I have an outstanding scan that was supposed to be done four months ago due to my swallowing problem. I have been waiting for an appointment all this time. Oh well Anyway Thankyou. for replying. I will post results as soon as I have them
I have just realise. If I am hypothyroid. Is that Hashimoto disease? I was under the impression it was cured. I get more info on this wonderful forum than I do from the doctor.
If you had Hashimoto's in the past, even if antibodies are now negative you still have Hashimoto's
You are legally entitled to printed copies of your blood test results and ranges
Very common for conversion of FT4 to FT3 to get worse as we age
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Most important results are FT3 and FT4 and we need good vitamin levels too
If not had all these tested then recommend you do so, privately if necessary
Hi WlowDragon. Thankyou. for your in-depth post. Very kind to offer so much info. I can order meds online but my local surgery doesn’t do online results. Also I am angry that no one told me not to take levo as you said. I usually take them first thing so definitely would affect my result. Because I have so many other issues I haven’t really done too much concerning my thyroid. , and put it all down to fibromyalgia. But reading others posts and your advice I can see I need to concentrate on it more. Having had it for over three quarters of my life I become lazy about it , and I will certainly ask for the results this time. Ty
Fragile58 that is exactly what I have done. Become complacent about it and put all my symptoms down to my Fibro. After years of the doctors doing it, it is very easy for us to start doing it too, isn’t it. It’s convenient- oh it’s just the Fibro. When I started become really ill with my AI, they put it down to Fibro, then it got to the point where they just couldn’t ignore the rapid decline in my health so I was tested for MS, then that came back negative, so they said well it must be the Fibro getting worse, the pain clinic noticed my low cortisol levels just by chance, now I’m wondering if my B12 markers were down too??
I just don’t know how to get my test results and medical notes that the hospital hold on me- there will be a lot I know that lol!
Hope you get the answers that you are looking for fragile58 again, thank you for your comments xx
Thankyou. too LuluCops. It’s all so frustrating and oh so tiring isn’t it. Sometimes I get sick of hearing myself thinking about it all. It could be this or it could be that. When all the time I think, if only someone would do all the correct tests , I totally understand your frustration at doctors too. Since I have had fibromyalgia, apparently everything is due to that. Whereas if we only had thyroid, I’m sure the docs would concentrate on that more. If my thyroid levels are what is considered “normal” for the surgery , then that’s it. I’m left another year. Thanks for your reply and I wish you some joy in sorting this all out .
My understanding is that once you have Hashimotos, you have it for life, you’re never cured. All they do is manage the symptoms.
Also my understanding from reading the symptoms and treatment on your post, they were treating you for Graves’ disease, although I could be completely wrong and I’m hoping either SlowDragon or greygoose can give you the correct answers.
Oh Sweet, you are SO NOT ALONE in your frustration and anger and everything else you are feeling. I was given some very valuable advice by someone else on the forum a very short time ago. I will be seeing a functional medical doctor in September, who I am told is quite good....who looks at the whole person and not just at the disease/s. I can't tell you more, because I don't know anymore than that until September. I have completely and totally given up on my GP and don't even bother to speak to him anymore regarding any illness as I know that he cannot/will not even try and help with my thyroid issues....how sad that we live in a country that cannot rely on government funded medics because they are controlled like puppets.
Anyway, most of the other fabulous people on here will have answered your other queries far more professionally than I ever could. Just wanted to say, hang in there...keep fighting for your health and know that you can rant and rave all you want on here....we have all been on or currently on the same battle front.
I truly sympathise but this is how it is and I feel exactly THE SAME AND HAVE DONE SO FOR MANY YEARS. However focusing on this will ruin your life as I have discovered and seen in others. You just have to make the best of it and look for the positives, not easy but that is the only way. In all these years nothing has really changed and the only ones who know how it is are fellow sufferers.
Looks like they haven’t tested my T4 for some time, I’ll try and get that tested.
Medichecks tested my fT4and that was 13.40pmol/L (12-22pmol/L).
Does that help? I believe I do need T3 as I believe I am unable to convert it, I just need to see a decent endo that is willing to do the relevant tests and willing to prescribe the T3.
I’ve just found out that I’m lucky enough to live in an area that is serviced by a very good endocrinologist by the name of Dr Peter Taylor, he is not only a world leader in the field but an advocate of patients needing T3 mono therapy or combination therapy.
I’m going to try my hardest to get a referral to his clinic, as although I’m not far from the clinic, it is out of my health board area and they don’t like to make those referrals 🤷🏻♀️
I went to the docs to give him all my moans ( but you can only discuss two complaints at one consultation ) I asked him about my aching and weak muscles ( finding it hard to walk now ) He grunted at me. Then I asked would I start to loose weight now I’m on Levo. He shrugged his shoulders. Then later on I went for repeat blood tests taken by a nurse. I told her I had every side effect from Levo and told her about everyone. She responded by saying, well let’s just see what the blood test show. I just left with feelings of disbelief, feeling depressed, and if it wasn’t for my husband and dog being in the car waiting I think I would have walked under the nearest bus. Isn’t there anybody that we can all talk to, and hearing some advice or interest would be grateful to hear. Just somebody who was bothered about us under active thyroids. People who once had a life and weighed eight stone less than they do now.
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Another battle
Latest results 
Nurse phone call update
Dr just rang me and is 'confused by my results'
dio2
