Apologies for lengthy post but I am so ill, so miserable and getting nowhere with doctors so I'm trying to be proactive.. I’m hoping that here is the place I will find someone who either recognises what I’m going through or can point me in the right direction.
I’ll start with my test results and then give some info on how I ended up wondering if hypothyroidism is my problem.
GP and ENT sent me for TSH test, normal both times. ENT sent me for an ultrasound, too, also normal. However, I recently had antibodies, FT4 and FT3 tested privately (via Blue Horizon) to rule thyroid problems out or in once and for all. Antibodies were normal but the doctor who sent the report flagged up my FTs and said I should discuss them with my GP.
TSH 1.2 (0.27 – 4.2)
FT4 9.9 (12-22)
FT3 3.4 (3.1 – 6.8)
I took these results to a GP at my surgery. After discussing my symptoms and history, she said she wanted to start me on a trial of Levothyroxine but needed NHS results to put on system. I went for the repeat tests, along with blood count, B12, Urea/Electrolytes, Liver Function, Bone Profile, Glucose, and Lipids. All those tests were well within all the normal ranges, apart from raised cholesterol. The thyroid results were:-
TSH – 1.04 (0.27 – 4.2)
FT4 – 12 (12-22)
FT3 – 3.5 (3.9 – 6.7)
However, when I went back to the GP, she said she’d been told by a senior doctor/partner that, at this surgery, they do not regard results at the bottom of the range as requiring treatment and therefore she could not prescribe for me. She seemed quite conflicted about it but, essentially, proposed we do nothing except monitor. But I’ve had some of these symptoms for a very long time and I just can’t carry on like this.
The symptoms include:-
Recurrent boils
Physical and mental fatigue
Low basal temperature in first half of cycle
Always either too cold or too hot – never comfortable, sensitive to tiny temperature changes either way
Severe acid reflux
Constant nasal congestion
Mid afternoon energy slumps and insomnia at night
Big weight gain 18 months ago, despite increased activity (now stopped, too tired to even walk the dog most days)
Muscle weakness
Aches/pains – especially neck, head, shoulders, hips, arms.
Scaly, itchy skin (and scalp, too)
Flaky nails
Mood swings/irritability/ depression
Easy bruising
Gritty eyes/random blurring
Outer third of eyebrows very sparse
I am a 48 year old woman so menopause has occurred to me. My periods are still completely regular and my temperature charts suggest I’m still ovulating but I know I must be pre-menopause anyway. Even so, not all of the symptoms I’m experiencing can be explained by menopause and I feel like my ‘lifeforce’ is ebbing away. I’m so exhausted, so miserable. The acid reflux is affecting my throat, mouth and teeth and, as talking is an integral part of my job, that’s adding stress and worry. I don’t socialize – I don’t have the inclination or energy. Everyday chores seem overwhelming . If I do manage to sleep at a reasonable time I then wake up at around 4am so I’m no better off. Any advice, please?
I am sure there are others with more experience and knowledge than me but I feel dreadful if my FT4 and FT3 levels are as low as yours and I certainly had all your symptoms and more at those levels. It might be worth taking a look at the book by Dr Toft who says some people only feel well with levels at the top of the range though with levels that low I am sure you would feel better with any increase. As I said I am sure others will know more than me. I have found that you really have to fight your corner.
Menopause doesn't make you lose your eyebrows! I can't think of anything that does... Oh! Wait a minute... Except... Hypothyroidism! Yay!
Yes, Kitty, you are hypo. Why you are hypo is another matter, because your TSH does not corrrespond to your very low TFTs. With an FT4 of 12 (only just 'in range') and an FT3 of 3.5 (below range!) one would expect your TSH to be much higher. And as doctors are incapable of seeing beyond their TSHs, they are bound to refuse treatment.
However, no matter the TSH, you are hypo, because you don't have enough thyroid hormones to feel well on, and that - whether doctors like it or not - is the definition of hypo.
All I can suggest to you, is that you suggest to them that you have a pituitary problem that they might like to investigate. Because TSH is a pituitary hormone and your pituitary is not putting out enough TSH to direct the thyroid to produce enough thyroid hormone. That might just get them thinking. Ask for a referral to an endo.
However, if they refuse to entertain that idea, change doctors! You owe it to yourself to get the best medical treatment you can, and they are not giving it to you.
Hugs, Grey
Thank you so much for your replies. I know I need to insist but right now the medical profession has me feeling like a neurotic nuisance. I just want to feel better but between the GPs and the ENT (who refused to believe the proton pump inhibitors he prescribed me could possibly make my acid reflux worse, yet the stuff just pours out of me when I take them) I have been left feeling a bit inadequate. Based on the conversation I had with the GP yesterday, I feel that even if I got an endo referral, it would go the same way. The whole process has worn me down, at a time when I’ve never felt less capable of dealing with this kind of thing. My feelings change daily from – they’re probably right, the TSH proves it, to - no, I feel lousy, this can’t be my life now. Thank you for your thoughts on this. I need to take some time away from doctors, maybe consider supplements in the meantime and, if I feel up to it in a few weeks, steel myself to try again. (I did buy some Thyro Gold from USA at the start of the year and took it for a couple of months. Not sure if it’s actually hormones or just a dietary supplement. I felt a little better generally and, interestingly, the boils stopped. Fatigue, temperature, gastric issues etc didn’t change much, though, and it made me a little sweaty, so I stopped taking it so that I could get my Free Ts tested based on my natural thyroid levels).
The TSH test never 'proves' anything. It's a complete con. It was invented by Big Pharma to 'prove' that synthetic T4 (Levo et al) 'worked'. Well, yes, it 'worked' at lowering the TSH, but so what! lol It didn't help the patients. It is now a nice little earner for the greedy vultures that control the medical industry.
You must not think that you are a hypochondriach. You feel what you feel. Why would you imagine it or lie about it? I once went to a dentist with toothache - a tooth that he had previously filled - he told me - without an xray or any sort of examination - that I was imagining my toothache, it was all in my head. I told him that if I wanted to use my imagination, it would be for something a lot more pleasant than toothache!!! And I can't imagine anyone would want to imagine hypo symptoms, either. They're not very pleasant. But imagination or not, you can't argue with eyebrows, can you.
Take your time and get your thoughts together. It often takes a while to process all this information you're getting. Then, one day, it will all become clear and you'll think, yes! that's what I need to do!!! A Eureka moment. lol But also consider that if it's at all possible, a change of doctors, practices, might be on the cards. Or could you go private? Because it's difficult to get anywhere with these people in their little NHS dug-outs waving the TSH flag. Either they don't have brains or they've forgotten how to use them. And it'll wear you out trying to get any sense out of them. Remember, life's too short to stuff a mushroom - get a doctorectomy!
Thanks. I don't think I'm a hypochondriac, don't worry - I just worry the doctors do. Like most people, I just want to feel well and if I already did I wouldn't be seeking help and answers. I've been healthy most of my life, probably took it for granted. But a few rounds of doctors and you can very quickly feel like a nuisance and feel patronised and judged. Used to have 2 lovely GPs at my surgery, both retired now, just when I finally need them! I'd be very happy to find out this isn't thyroid related - but it IS something, that's the issue, and at this moment in time, nothing is being treated or investigated, despite the fact that last week one GP felt I had a treatable, underactive thyorid.
'Normal' TSH with low FT4 and FT3 points to secondary hypothyroidism, caused by issues on the pituitary/hypothalamus axis.
In this situation you cannot rely on the TSH because it is so out of kilter with what is happening in the thyroid and guess what, TSH is a pituitary hormone.
NHS protocol for this is a referral to an endo - this is not a job for the GP. In your GP's defence, she may not have seen this before/very often. It's not that common.
Do some reading on this - go back to the GP and ask for a referral.
AN
Thanks, AN. I did read up on what those private results meant before seeing my GP, so as not to waste anybody's time. I saw some articles about potential pituitary/hypothalamus issues. As I said, the GP (locum) I saw was willing to treat my symptoms and we never even discussed possible causes of the odd results, but she has been told 'no' by a partner since my NHS results came back. I'm not sure I'm up to a repeat visit just yet - the message yesterday was, unequivocally, the doctors with clout in this surgery will not entertain the idea that you have a thyroid problem. So whilst I agree that I SHOULD insist on a referral, you can see why I am reticent about going back right now. I feel like 'hypochondriac' is probably stamped in red over my notes.
Is it significant that, over 4 TSH results from the last 16 months, the level has got lower every time?
Another reason I suspect even an endocrinologist in this area might not be receptive or sympathetic - the GP specifically asked for TSH, FT3 and FT4 on my last blood panel but she told me yesterday that the lab sent back only TSH. She rang them and asked why they hadn't done all the tests and they said that, because the TSH had been normal, there was no point in doing the further tests. She insisted and I suspect that may be how a senior GP got in the loop. So this is the prevailing attitude in my area.
Before i was first diagnosed, a number of years ago, i knew nothing about thyroid conditions at all & felt so ill i seriously thought i was dying of something that the dr was not bothering to try & find (he just kept giving me the pill & anti-depressants). After about 10 months of going every week, I eventually asked for 'some kind of hormone test' because i knew something was wrong. They obviously tested my thyroid, but he then said it was 'a little low we'll just keep an eye on that'. I went home ,looked up the results in a book (no internet back then :)) & thought 'that is what i have!!!', went back to a different dr who tested again, gave me thyroxine & i felt so much better!!! I suppose my point is, dont give up & try a different dr (or 10 :)) if you have to.
It seems to be pretty standard now for NHS labs to do TSH only if TSH is within range, but this will not work for you. Yes, it is significant that your FT4 is getting lower - it means that whichever bit of the process is not working is even more inefficient now than it was before!
AN
No, sorry, I was referring to the TSH. In just over a year it has dropped from 1.7 to 1.4, then 1.2 and now 1.04. I was wondering if decreasing TSH output was significant in terms of pituitary dysfunction. I did some reading at pituitarysociety.org/ and everything else seems consistent with what they say. I was just curious about whether my TSH might continue to fall or if that's just been a coincidence.
Thank you, Kaz, for your reply, as well. I really do appreciate all the supportive comments on here.
I've found that Vogel's Centaurium herbal tincture and digestive enzymes really help acid reflux, as well as cutting down or reducing all carbs. Hope you can get the help you need soon x
I have Thyroid eye disease for which I am having steroid IV treatment,but when I first saw the Ophthalmology Consultant he told me to take Selenium 200um per day help my Immune System, within days of taking it my dreadful acid reflux disappeared!!!( Bonus) give it a try Kitty if it works for you then one less symptom to contend with. Good luck x
Thanks Polaris and Consnan. I've tried enzymes but I'll give the tincture and selenium a try. The acid reflux is the symptom that finally got me to the doctor. I never even thought of everything else as a symptom of anything but, after months and months of worsening reflux and research, I realised there could be a connection between that and everything else.
Result...I have selenium in my cupboard! In addition to all the usual reflux advice, I have tried just about every supplement known to man so one of my kitchen cupboards looks like a branch of Holland& Barrett. And I've just found some selenium I didn't know was there so I'll try that straight away. Thanks.
If your doc wont treat you, then you may find it easier to find a doc who will treat you. Otherwise you are battling the uneducated whilst feeling lousy.
Thank you, Issy. Thank you, everyone.
I have done extensive research over the weekend and found articles by proper doctors that detail my symptoms and almost my exact results. As such, I have decided to self-medicate for a trial period. I found 2 wonderful articles (amid much controversy and argument) about how to do this cautiously and safely. I appreciate that this site does not advocate self medication so I won't post the links but I was delighted to find such supportive and enlightened information from qualified people online. For me (and I'm sure I'm not alone) it's a godsend. I feel absolutely wretched and completely unable to take on the NHS after recent experiences. So I have purchased Armour (it seems from my results that this will be more beneficial than T4 only, anyway) and am going to follow the incremental dosing advice and monitoring of all key responses and vitals. I have no doubt now that my results are far too low and that I have secondary hypothyroidism. I simply have to address it and can't delay any longer.
Hi, Many of us self medicate very successfully. Armour is a brand of dessicated thyroid, there are many more.... Thiroyd, acella thyroid, thyroid s, Naturethroid and erfa. They all contain roughly the same hormone amounts but have different fillers. Some brands suit different people better than others.
If you are hypo then chances are that the acid reflux is actually low acid, which is treated with betaine hcl, available in the uk on the net. Sounds impossible, but read this..... drmyhill.co.uk/wiki/Hypochl...
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