I first came on here 4 years ago because I wondered whether I had underactive thyroid. At that time my TSH was 1.56 and T4 was 13. They were the only results I had and was told they were normal.
Last week I asked for bloods to be done again as I feel much worse and so tired all the time. I am also cannot lose any weight despite trying very hard. I have been taking my basal body temp for a couple of weeks and that's always lower than it should be .... It's hardly ever been 36.5.
Got my blood tests today and receptionist again says they are normal at TSH 2.10 and T4 at 12. Where do I go from here. Any advice very welcome. Thanks.
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mushybrain
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The doctor should take note of your clinical symptoms but unfortunately their guidelines state we shouldn't be medicated until TSH is 10 (horrendous). It would appear that the whole of the BTA has never had a thyroid gland dysfunction.
If your doctor asks where you got your info you can tell him HU Thyroiduk which is one of NHS choices.
Well said...I applaud you...I've been trying to get my doctors to realise the error of so called 'Guidlines' for over a year..
And at last my Endo is listening and learning and working WITH me...he's allowed me to take T3 with my Levo.....I would love to try Paul's recovering with T3 but I daren't push my Endo to far.....he refuses to give out NDT or similar...saying it's to risky...hmmmmm.....
And I've mentioned 'Add Back ' therapy to him for Graves' disease ...I'm still waiting for his input on that...if you need more info on add back I can let you know the support group and wonderful lady who administers it...she very informative and helpful...she and her son have achieved remission and stayed in remission for many years and without having had their thyroids removed..both are very fit and well..she is so helpful and caring...and posts the very best websites for information....although she is in the US...she helps people from all over the world...she had even helped people who have had the thyroid removed that have had raging antibodies...she recommend taking anti- thyroid meds in a very low dose around 2.5 as a main thence dose...she says it can take a few years on this to achieve remission but then you need to carry on taking the low dose to STAY in remission otherwise the antibodies can go on the rampage again....UK quidelines advise coming off Carbi far to soon....that's why we remain very ill after TT....I would love to hear your thoughts on this .....
I am glad to say I don't have Graves, it's bad enough having straightforward hypo. It must be awful to have 'ups and downs'.
I would never have thought I would ever had to go outside the NHS to get better and trial several alternatives. Thankfully now my GP prescribes T3 alone as he, too, wouldn't prescribe NDT but luckily T3 alone works for me.
I am thankful too that my NHS Endo agreed to add some T3 to my T4 and it made a huge difference, so much so that when I went for my check-up the Thyroid Nurse was astonished at how well I looked (she couldn't disguise it). I then asked to be signed off and return to GP. Thyroiduk, by then, had given me enough info to try other alternatives and it is even better now having Healthunlocked-Thyroiduk as we can help one another through all our experiences.
The addback for Graves and the fact the some have got remission is wonderful and it may be useful for many. As you know, with the NHS doctors have to be careful as they can end up in front of the GMC if they go outside guidelines and we suffer in the end.
I have contacted surgery and asked for GP to ring me re the results. She's not back until next wed so recep. Says she will leave her a message. In the meantime I am compiling a list of questions to ask her, so all your replies really help.
Thats a good idea asking gp to call . I called my surgery and the receptionist just likes saying normal she was determined that I didn't need the numbers .. Think I'll get my doc to speak to me on the phone save me taking time off work too
It made me laugh how receptionists gave me my results on phone.. They're normal she said ... "Slap bang in the middle." She was talking like she was an expert!! So I asked her what tests were taken and she said "thyroid tests." So I asked her which ones precisely. She repeated "but they're normal." I said I'd just like to know and also exactly what the readings were. She told me in the end but I don't think she was best pleased.
I had no idea until I joined this forum that I was entitled to a copy of my test results, and I had always put up with, as you say, the receptionist telling they were normal and htat was it.
Recently my surgery implemented some mobile app, and without asking started texting me - now for most people this is no bother, but I have an ancient phone, with little capacity and for every text I get I have to delete something else - so I notice them.
Anywhoo, I had some test result back which were not good, such that the doc called me twice in one day to discuss various things, and appointments because of them. the very next day I got a text from the surgery telling me my test results were back and they were fine!
Snap !! mine didn't like my interrogation . I was right again tho I asked for vit d and ferritin suspecting they were deficient and they are. I asked for copies before and was told to write to the practice manager. I never bothered tho. They patronise us and say the numbers are complicated all you need to know is they are normal . Not complicated at all when we have forums like these and Facebook pages and google. Infact I think I'm fast becoming an expert lol
Well GP has just phoned me as I requested and she says the tests are normal. I said I thought the t4 was at lower end but she just insisted that the FSH was normal. My results are up top of this page. I don't feel confident enough to argue with her! I have another apt to see her in 2 weeks time and she said she would do the tests again in 3 months if that's what I wanted. She also said that giving me a trial of thyroxin was not the way forward and could make me feel worse.
I reminded her that I'd been taking my basal body temp for several weeks and it was always low but she didn't comment. She also didn't examine me and didn't look at the list of symptoms I took along with me. How do I prepare myself for my next appt. what questions should I ask. Thanks
Seen GP again and at my request she is sending me for further tests. I waved the stuff at her from Thyroid UK but she still said my results are normal. I mentioned not being tested for FT3 and she said it isn't usually done. Even though my T4 was 12 and I said this is on the lower end of the range she said it's quite normal and she's not bothered about it.
She wasn't interested in what I said about my low basal body temp. She's requesting tests for T, FT3, Thyroid antibodies, UEs, FBC2, LFT, HBA and B. I am quite happy about that and am going for these later this week.
She said we don't want to get sidetracked into thinking it's underactive thyroid when my symptoms could mean something else.
Total rubbish....that doctor needs to go back to college...one that KNOWs about Thyroid problems...by refusing to give you a trial on thyroid meds this doctor is making and keeping you ill.....also thyroxine alone is very poor therapy...I wish UK doctors would get they head out of the sand and learn new methods....
My heart goes out to you...fight the fight for correct thyroid treatment...join all the support groups on Facebook..they are wonderful..they have saved my life...
Asked for them to be done again which they were in June.
I asked for full tests to be done and they came back as
TSH 1.55, T4 12, T3. 4.8. Thyroid antibody 11.1
HBA1c was 40 mol
The only one GP said was slightly high was HBA1c. reckons everything else is normal.
I have talked to a health trainer at practice about trying to lose weight and she agrees that I eat a healthy, balanced diet, I take exercise so she can only suggest smaller portions.
So how come I feel tired out, how come I am shedding skin on my legs like a snake and I still can't lose any weight despite cutting down on portion sizes?
HBA1c was slightly raised at 40 mol so I saw health trainer at surgery and she suggested I ate smaller portions as my diet is healthy and balance and I take exercise. GP says I am normal.
I feel worn out and am shedding skin like a snake. I literally have to wipe leather sofa down after I've sat on it with bare legs!!! I can't lose an ounce either. Something is not right.
We're here! Do you have the reference ranges for those tests? If you can get those, we'll have a better idea where you are.
However, even looking at it with the reference ranges where I live, you seem to broadly be in the same position that I was in for years, with TSH 'normal' but FT4 low in range and therefore FT3 low in range, leading to a rake of hypo symptoms and poor quality of life.
My life has been completely turned around by getting on medication that suits me (levo).
Come back with the reference ranges and we'll have a proper look.
As well as getting thyroid tests done, it is well worth asking for blood tests for ferritin, iron, vitamin B12, vitamin D and folate to be done. (You will be lucky if you get the iron done, it is not done routinely, but the others ought not to be refused.) Once they are done, ask for the results including the reference ranges, and post them here.
Just popping on to say I feel just the same as when I had last tests. Dog tired, flaky skin, feeling low etc. I have been going to Slimming World for ages and lose a pound, gain a pound, stay the same so that's annoying me. I exercise every day .... I either cycle about 5 miles or walk 3 very briskly. I just cannot lose weight and am really fed up because lovely clothes I wore two summers ago just won't go near me.
I go out for a meal every so often with about 15 other ladies and we all eat pretty much the same. I don't have dessert and I don't drink alcohol and I don't consider myself greedy. I don't ask for extra portions or have side dishes. They're all knocking back wine etc and they're all slimmer than me AND only a couple of them do any exercise.
I just feel I'm wasting my time by going back to the GP even if I see another it will be in my notes that she considers my results normal.
Mushybrain (great name), give up on the NHS and try NDT. You've got nothing to lose. Do some research on here and go for it. I'm in much the same position as yourself and have been trying for 2 years to get the NHS to help. It just didn't happen. On NDT 3 months now, not brilliant yet but getting there.
Still no better a year on. They just don't take me seriously. I can't lose weight despite exercising every day and eating healthily. I have terrible dry skin, sleep forever and loads of other symptoms.
Still the same after all these years but now with the added problem of rapidly thinning hair. Saw the GP who said that as my bloods are normal the only thing she can think of is having my zinc levels tested so I am booking in for that. She says there are no supplements that she knows of that will help as I told her I have been trying one for several months with no success. I feel like I am wasting all these years feeling tired, flaky skin, low mood, thinning hair, etc
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Feel unwell with changing doses
General unwell feeling
Still feeling very unwell
feeling unwell on same dose
