I have experienced symptom of hyperthyroidism for some years and have had previous tests resulting in ‘borderline’ results. I have a family history on my mums side of thyroidism.
Sorry meant hypothyroid. GP never seems to move past ‘borderline’ but I have so many symptoms it’s getting to me. GP even said I was depressed!!!! I’m not depressed, just fed up of suffering.
Just wondered for my own peace of mind if the results were ‘borderline’
I would try to push GP for a trial of Levothyroxine to see if this improves your symptoms. Some GPs are more amenable than others (eg wanting to see elevated TSH in 2 repeated tests), yet others push to see TSH approaching double figures (which is shocking, as TSH should be under 2!) As you have been advised by SD, ensure your next blood test is before 9am (as TSH will be at highest).
Also look to check key thyroid vitamins- ferritin, folate, B12 and vit D as having these optimal (not just within range) supports thyroid health.
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Thanks for all your help, it’s just getting the GP to veer from his computer screen. I’m also struggling with high BP and these palpitations, maybe something to do with this?
I experienced palpitations and fast pulse before my thyroid medication became optimal. I also had similar symptoms in peri menopause (which are now alleviated with HRT). It could be either (or both) at play for you.
It’s a relief to know I’m not alone as it’s quite scary been constant for over a week now. Got it checked out at A&E and they were happy it is ectopic beats and harmless.
It’s not knowing whether my symptoms are menopausal or thyroid although I’ve suffered with some of them for years.
If you go to this page on the Thyroid UK website you can download a tick-box list of signs and symptoms. Print it out, tick all that apply and show to your doctor.
Thanks Anthea55, I’ll print it off. As for seeing a different doctor, I’ve seen one, had bloods done, they come back ‘borderline’ so nothing is done over and over again. The only reason I had them done again in August was that she was a trainee doctor and actually listened to me. Sadly she’s finished her placement now and left. Hoping endocrinology come back with something after these last results although he ended his last response with ‘I’m sure it will be fine’ 😡
You are definitely Hypo🙄 and the TSH is high enough, the FT4 is below range on two blood tests more than three months apart and you have a positive over range antibody result - do any of these Drs have a clue? I'm sorry but with ALL your symptoms they should have acted. I never got to the ridiculous arbitrary number 10, but I did at least get a diagnosis (OK I was mismanaged thereafter). Have they done an ultrasound on your thyroid (NOT that it should be needed to confirm diagnosis).
So when you get onto thyroid hormone don't let them leave you on a low dose for too long as SlowDragon says 6-8 weeks. I was left on 25 ug for 6 months and literally conked out one day walking along the prom (just like a car running out of petrol). I would not wish that on my worst enemy. Guideline dosing in the NICE guideline is 1.6 ug per kg (10 ug per stone). It is ONLY a guide but that helped me fight against under medication as my TSH became below range long before I reached an adequate dose of Levothyroxine. As most doctors haven't a 'scooby doo' and chase TSH this leads to many people being under medicated (WRONGLY).
PurpleNails has shared a brilliant Westin Childs video that is just gold. Well worth a watch - I've reposted below. If you click on my face at the top of my reply I have written my bio as a case study which may be helpful. I recommend self advocacy.
It does mean spending quite a bit of time reading round and getting familiar with the subject, but apparently doctors get very little time on the thyroid and certainly not enough time to start questioning what they are being taught. My discussions with them thus far would confirm this 😂 Doctors trust the information they are given in the medical echo chamber. They certainly don't question it...... I think I have left a few scratching their heads.......
Trust me, there is nothing nicer than asking the doctor a question they don't know the answer to (but you do)😉👍
Thanks for the info Charlie-Farley. I feel we trust our DRs and what they say unless we know different. The last visit, he seemed hell bent on me being depressed to the point I began to doubt myself. But I’m not depressed, I’m fed up of not getting answers and feeling rubbish. My hair has thinned, I’m always cold, fuzzy headed, trembly, dry skin, tired to the point I’ve reduced my hours at work and many other symptoms. I feel like I’m treading treacle and no one is listening. I’m so glad I’ve found this chat and feel like I’m not alone anymore.
I was diagnosed with depression anxiety disorder by my doctor (not that she told me) when I presented with a heart rate of 52 bpm and symptoms a plenty. I had associated symptoms and issues for years, but the connection was never made. A guest (fellow sufferer) had actually diagnosed me and alerted me to the need for diagnosis along with a grave warning about medical ignorance. When the blood test results came back the doctor had to grudgingly confirm it. They don't like being wrong. The depression anxiety disorder diagnosis still sits on my record - not as a symptom of undiagnosed hypothyroidism, but as a diagnosis in its own right. This is so common, my experience is not unique.......
Things Drs put people on before diagnosis which could have been improved WITH diagnosis.....
Depression - frequently resolved when we are not dragging our sorry a$$es about feeling terrible in every way.
Cholesterol - back in the day doctors understood high cholesterol could be lowered when thyroid hormone deficiency treated - It is in the guidelines, but they dont find it.
PPI's for heartburn often as a result of Low stomach acid - PPI's are for high stomach acid. Not good for absorption of nutrients.
I’ve struggled for years with symptoms washing over me in an ebb and flow pattern. I also have anxiety waves for no reason at all, they just bowl me over, my throat feels like someone’s strangling me Now I feel it’s part of my thyroid.
My mum and many members of her side of the family have thyroid problems throughout it, so I’ve always been aware of it but it’s getting the GPs to listen. It’s a brick wall every time.
One thing I noticed is their eyes glaze over the minute we say "I feel......" we have to give a very cool detached assessment of our condition to get their attention. Speak their language, present evidence. I started upping the anti after a rather lively exchange with a young doctor at the surgery wanted to leave me on 75ug of levo because I was 'normal', which for someone of my weight and stature equates to about 50% of therapeutic guideline dose (clown). I managed to batter her down with my knowledge over hers (I was amazed/relieved) but I left nothing to chance thereafter. I have a series of posts that essentially recorded my successful battle to a therapeutic dose. I have also tried to point out how I got them to listen...... I have been strident and belligerent, taken no prisoners. It got easier towards the end because I honed my method. Have a read - It may make you laugh. All accessible from my profile and if you want to specifically ask me anything just tag me in on this or future posts by putting an @ in front of my name. @Charlie-Farley a box with my name and face should appear at some point click on it and the name should turn blue.
I learned the hard way that I can either make my endocrinologist/ GP happy OR get well. I’ve had to upset both in the process of my recovery journey. It was uncomfortable at times but I now don’t regret it. I think, especially as women of a certain age, that we are socialised to be nice, fit in, don’t rock the boat. But for many with thyroid problems, if you don’t rock the boat you’ll drown. Time to be a bit badass! ☺️
There’s at least 2 million people in the U.K. on replacement thyroid hormones, 9 out of 10 are female
It is, however rarely diagnosed or managed well
See a different GP
If still no luck, test privately before booking consultation with thyroid specialist
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
So sorry you are going through this. Sadly it is a familiar tale to many of us. You are not alone now though!! Doctors are very ignorant re Hypothyroidism and frankly unless the labs say do something they often ignore what we are saying. I had one doctor tell me that signs and symptoms is 'old medicine' and that these days they go on blood tests and scans!! Mind blowing..Knowledge is power! Knowing about Hypothyroidism and it's effects, how to treat gives you a lot more power. A good book to read is Living with your Thyroid by Barry Durrant Peatfield. You will know more than most doctors after that read.
I've been told all sorts over the years by doctors.... Recently heard a hospital nurse with a rather loud voice discussing me to other nurses who described my NDT as 'funny meds' and she was quite derogative saying "and of course she sees a private Endo!" I was horrified. So ignorant/rude. It's hard sometimes not to take it personally!!
It’s not in your head! You’re right and need meds.
Arm yourself with knowledge and go tell your doctor you need meds. As your fT4 is actually below range, and TSH high in (‘normal’) range, you might have a decent enough chance with them.
It’s hard to do this when you’re not feeling well and are so tired, but you can do it and we’re here to support you!
I wouldn't want to comment on levels, as those are your readings and your tests, but I did have palpitationsas one of the many symptoms of hyperthyroidism over the years, but always explained away as ooh could be menopause! If it's not meds(which rarely get checked on in my experience) then it was menopause.....until it was much to late in the day to stop some of the worse symptoms. Change GP, speak to Endocrinologisrs secretary to ask if they can pass on your concerns to consultant and you'll call back. Think of the email chain involved going backwards and forwards! Everyone's result is unique to them, although we all are on the average scales to GP's, you need a good Endocrinologist to help.
Seems to be the thing now with GP’s emailing Endocrinologist (likely other areas of Consultants too). Awful fob off.
It doesn’t work!
I had GP hormone bloods done but they missed off ACHT, B12, Vit D and others. They did 4 .All borderline except Cortisol was considerable below NHS minimum.
My results were checked off by GP’s and marked all as normal..clearly didn’t really check. The Endo also ignored the low cortisol and that many bloods weren’t done, I know as seen the reply from my GP’s writing to Endo re ‘ok to try hrt?’.
Meanwhile GP had written to Endo asking if ok to try me on HRT, I am post menopause. Said yes.
I went private. He said important bloods missing, cortisol very low and all my symptoms point to thyroiditis, unknown if autoimmune type or not so far.
He also said do not take hrt as it will revert me back to pre menopausal and put me back in that cycle 😲.
This has been going on for years. The impact on our lives being ignored eh.
Confused01 It’s awful isn’t it. I have put up with ‘normal’ or ‘borderline’ for years. Last August thank goodness a student doctor listened to me, did the tests and followed it up with endocrinology. Unfortunately she left the practice and even though they received the reply from endocrinology in September, no one looked at it til December hence the recall for further bloods. Results received January and email back again to endo which I am now awaiting a response from. Ended up at A&E on Friday with prolonged palpitations who advised I speak to GP tomorrow regarding my high blood pressure 🙄 If I hear the word depression once more I think I’ll scream. He even asked me to ask my family if they thought I was depressed as I may not be able to see it. They’d sooner fob you off with pills that don’t suit your condition than find the real cause of the problem X
I’ve had all the rubbish excuse questions..anxiety etc. Now I say at the start of conversation, ‘let me clear ‘I am not depressed, suffering psychological anxiety, though conditions can cause such like if not being treated etc and it’s normal for anyone concerned about what’s going on to be concerned’. Thats pre covered their excuses 🙄.
I get the impression many Dr’s would rather we were just seen and not heard.
My male partner gets hugely greater consideration, and that’s not paranoia, he says the same.
I get to the point that I begin to doubt myself and think that they must see something that I don’t. And of course there’s always ‘it could be the menopause’ to fall back on. Last time GP wanted to put me on depression medication to cover all bases, I refused as I don’t want to be on unnecessary meds only the ones I really need.
They shouldn’t be dishing out antidepressants like that, and menopause isn’t an excuse either, they can help with that when needed. Trouble is a GP is just that a general dr. Tends to be the old school that have more specific knowledge in areas, from so many years of experience, but a retiring breed. Worst thing is when you learn to understand and they pooh pooh it, very patronising.
In my area Consultants are throwing out GP’s referrals, possibly because they feel GP’s are able to help with. What a mess, but could be a dangerous mess for some.
Thyroid uk has a list of more helpful doctors and endos although you might have to pay and a number of us choose to treat ourselves rather than see our health go furthur downhill. Hopefully somebody will post you the link to the helpful doctors list.
I think its time he sent you to an Endocrinologist not just communicating with him? Maybe you can see some of the responses from the Endo or notes dr has made on the on-line system as most areas have given patients full access now. If not just ask for a free copy. They are legally yours and cannot refuse.
You can get antibodies into remssion by eating a couple of organic brazil nuts a day or supplementing with selenium with selenomethionine marked on the label.
As mentioned if your dr hasnt checked your Ferritin (iron) B12, folate and Vitamn D worth asking for these also.
Just an update, my NHS app has been updated with response from the endocrinologist.
‘The TSH is gradually trending upwards with latest 5.4. Suspect she is going to go on to become hypothyroid. Suggest repeat again in 6 months and if upward trend in TSH continues, it will likely rise above normal, which, with a positive TPO, would justify starting levothyroxine.’
So no further at the moment there. Think I’m going to pay and have a full blood works done with vitamins and minerals etc and move from there.
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