Borderline low thyroid but GP refuses to treat

[squiffy]

I am pretty upset and would appreciate advice
I am 40 and had a baby 6 months ago. I now have all the symptoms of Hypothyroidism - fatigue, low body temp, bad skin, dry hair, muscle aches, itchy eyes. You name it I've got it. And it's not the normal post-baby stuff (I have a live-in full-time nanny and a baby that sleeps through the night) I only discovered hypothyroidism existed because I was investigating on the net why I was putting on weight even though I was dieting. I have been taking less than 1,000 calories a day for 3 months and not lost a single kilo. and it's a bloody healthy diet - all fibre and low GI.
Anyway, went to dr's, got tested for thyroid and results came back as (I think) Free T4 10.0 and TSH 1.9. Which was interpreted as borderline low thyroid but 'not a problem' as my TSH wasn't in overdrive. GP has said I should get tested in 6 mths time. When I spoke to him about the problems I am having losing weight he basically didn't believe me about the 1,000 calories and gave me a lecture about there being no fat people in Auschwitz
So, having counted to about 10,000 until I calmed down, I decided to call the local private clinic in the hope that I could at least discuss my problems further with an endocrinoligist, even if ultimatley there's not much that can be done in reality. I would at least like a civilised conversation about what may/may not be going on with my body, and am happy to pay for it if I must. BUT private practice won't take me without a referral and GP won't give me a referral because he thinks I am deluding myself and don't know how to count calories or eat healthily.
What I do know is that my current regime of Reductil off the internet to stave off food cravings (because GP won't prescribe it despite my BMI being 32), modafinil off the internet (because I will lose my job if I can't stay awake) and St Johns Wort (because I will lose my mind otherwise) certainly ain't healthy.
I've got Kelp but am scared to take it because there's conflicting info on the net. Ditto serasperilla, ditto selenium.
Anyone got any good advice that doesn't involve slitting my wrists (or the GP's tyres)?

Is there any way you can change GP?

squiffy, I was told by my dr that the normal range for T4 would be between 9 and 19. So your T4 level is on the low side of normal.....my T4 level is 11 at the moment and I'm on .75 of Thyroxine a day! However my TSH levels WERE raised, indicating that my body was trying to stimulate more thyroxine in the blood.....I guess the dr is looking at your TSH levels and going on that alone.....

Am not a dr so can't say right or wrong, but I would definitely get a second opinion if you can....change GP as Theblonde suggested? If you can't, I would keep presenting yourself at the GP actually - don't mention the weight thing, but harp on about your other symptoms....ask for a re-test in three months rather than six?

GP sounds like he only 'heard' the bit about your weight, which is why I think go back and focus on the other symptoms, which as you say are classic thyroid signs....good luck.

you can and should ask for a second opinion. Endocrinologists like to see lower numbers than gps are happy with (I think gps are told tsh between 0.5 and 4 is ok whereas my endo likes it to be under 1 - at least he did when I was pg.)

I see prof Nadir Farid privately - try googling him? I went to him as when I first had symptoms I was living abroad most of the time so not in the NHS system. I didn't need a gp referal. If not convenient, insist on a second opinion via the NHS. It is absolutely your right.

Your gp sounds like a nana anyway. That Auschwitz comment? Try asking him why some died of starvation and some didn't despite the same rations...

Squiffy, your T4 levels are normal, and I'm not surprised your GP won't prescribe thyroxine.

Are you doing any exercise? If you're relying on dieting to reduce your weight, then your metabolism will slow down to cope with the reduced calorie intake, and you will feel lethargic and won't lose weight.

margoandjerry, pregnancy is different.

There is an awful lot of info out there on subclinical thyroid problems, even from orthodox doctors! I do think that your self prescribed list is pretty scary, IMHO, but I completely see why you are taking them. BTW depression is also a side effect - presume that's what the St J W is for....

Anyway, I had a test with a similar response to yours, but spoke to a friend of mine who is a naturopath (from Australia, they take it very seriously there!), and she felt there was a lot that could be done with a vitamin/herbal approach, and it's definitely working for me. I honestly don't think Thyroxine would be the way forward, but maybe you should/could consider this different approach. Any doctor that talks about concentration camps wants locking up. It's not an appropriate metaphor (simile? You see my brain was taken away when I had DS).

If you wanted to talk to Jen, she is based in Yorks. in Ilkley, but can do a phone convo (although she'd rather see the whites of your eyes!).. or can suggest a naturopath nearer to you. Let me know.

BTW, if you can / do change gps don't even talk about the weight thing until you know what kind of doc. it is... as Sunny said, concentrate on the other clinical symptoms.

HTH

Tissy - after my first child 3 yrs ago I had a personal trainer and went to the gym every day. It was a long haul getting back down to my normal size 10/12 but I got there eventually. I'm usually pretty active and have my own gym at home. This time I planned to do the same, but before I get my trainer on board I know I need to at least be able to walk up two flights of stairs without feeling faint and sending my pulse rate through the roof. I can't even do that yet. Wish there was an [utter misery] face I could insert here. The worst of it is that I have spent my whole life running full-pelt at everything and it is really doing my head in to be struggling now. Have gone from juggling career & kids & postgrad studies (and loving every minute) to being totally depressed and not wanting to get out of bed in the mornings. That's the kind of stuff that I can't seem to get through to the GP - he just seems to think I am some couch potato sat at home eating bags of crisps and expecting a quick fix to make everything better. And what's worse is that half of me can even see his point of view - if someone my weight told me that they were on a diet but just 'not losing weight' I'd probably assume they were a dimwit with an honesty thermostat set to low. Bugger, can't find a [hollow laugh] face to use either.
DH was a professional sportsman in the good old days before we grew up, and I know where you are coming from, Tissy, regarding the slowing matabolism - I just don't know how to break the cycle to stop it. I go on the bike/tradmill at home and just end up in tears as I can't keep up even 2 mins at lowest levels.
I will try Prof Farid, thanks MJ. And Jackaroo, I would love to speak to your naturopath or get a recommendation for a naturopath in London/South East. I'm not set up yet to receive CAT's but will get that sorted now if you want to send me her contact details.
Thanks all for your comments/views. It's all much appreciated - especially as I have been too scared to discuss this with anyone other than my DH for fear of looking like the aforementioned dimwit. Anyone with any other suggestions please roll up here.

Squiffy - some GPs are just very unsympathetic and take huge offence if you dare suggest what could be wrong with you

You could go back to the GP and ask for a referral to a dietitian. You should also tell him how your low energy is affecting your day to day life and ask him what else could be wrong?

hiya!
9 years ago,i was piling on weight,constantly cold,couldnt stop crying,my hair was falling out,i struggled to get up in a morning and felt like i was dying!i went to my gp who said i had depression (probably becuase we have an extrememly high deprssion rate,and he just wanted to pass out the prozac!)
i was on prozac for 6 months,and really felt suicidal.i went from a size 10 to a size 22 in 8 months.but still my gp said i was eating too much and not exercising enough.
then one day i was walking to school and cried on the way there as my legs hurt so much.i went to the doctors the next day and told him something was seriously wrong with me.
he decided to take some blood and i was given an appointment for the following week.two dyas later i got a phone call telling me to go straight in.
gp said he had never seen a thyroid level so low,and if i hadnt hadnt had my blood done when i had,within 2 weeks i wouldve collapsed as my internal organs wouldve started to stop,within 6 weeks i wouldve been dead!(nice gp eh?!)
ive been on thyroxine ever since and its constantly yo-yoing (am currently on 175mcg a day-6 months ago i was on 100)
if your borderline atm,then regular testing will be done,just to make sure it hasnt changed.but if you feel any differnet beofre that 6 months,then you should go back.
and maybe you could try increasing your calories as i got told you have to eat enough calories to lose weight otherwise your body stores fat because it doesnt know when it will get enough again.
hope you start feeling better soon

Also, have you thought about pcos? Has similar symptoms to thyroid (difficulty losing weight etc). Also needs diagnosis by an endocrinologist.

I sympathise with the energy problems too. I think if you can't lose weight on 1000 cals you prob have got some sort of hormonal problem - either thyroid or pcos or something similar. I know how difficult it is to be told you are not doing enough when on that sort of diet, you should be losing weight easily.

RE the thyroid, gps tend to focus on the Free T4 level but that doesn't tell the whole story. Your TSH could be high suggesting your body is making a great effort to produce only normal levels of T4. Anyway, your TSH sounds more or less ok to me but it's always worth remembering that the real experts will always insist on seeing both values.

Prof farid is good on this whole range of issues and he has his own website which I now can't remember but it might give you something positive to focus on.

Go and see another gp, he shouldn't just be going on the blood results he should be looking at your symptoms as well. I developed hypothyroidism after dc3 and felt dreadful, luckily my gp prescribed me thyroxine after he sent me for a scan and it was discovered that my poor little thyroid gland had shrunk to almost nothing, and my blood tests were low/borderline. I have been battling with fatigue etc even whilst taking it, and felt that thyroxine alone was not enough. I now take T3 cynomel 25mcg daily as well as 100mcg thyroxine. I had loads of other tests done which came back negative as I felt so dreadful. The consultant I saw told me I'd have to live with them.That spured me on and I got on the internet and started taking thyodine a natural support for the thyroid gland and also an adrenal support. I got these from green willow tree dot com.( I don't take this anymore) I'd recommend having a hair analysis done also, mineral check ltd tel 01622 850500 do an amazing analysis and recommend vit/minerals etc to take. My sister had a dreadful time with her unhelpful gp who did everything but send her to an endocrinologist he was so adament that it was not her thyroid.She is on thyroxine but her endocrinologist refuses to give her T3. We have a very strong family history of it and it affected us all from 39 onwards. Good luck I feel for you, I still have episodes of finding it difficult to drag myself up the stairs and collapsing on the sofa for 2 hours in the afternoon, but they are less frequent now. An excellent book is The great thyroid scandal and how to survive it by Dr Barry Durrant-Peatfield by barons down publishing. Also go to a good nutritionalist too. If you need any more help just ask.

Thanks Mountaingirl - sounds like you and your sister had a nightmare. And Buffy, Margo too - really appreciate your stories and support.

I went to see Prof Farid today and things are now looking much more positive. He asked me some very specific stuff about recent PG and medical history which all seemed to be ticking the same boxes for him. He is fairly sure he will be able to pinpoint the exact problem, and I have a whole raft of tests in the next week - livers, insulin, glucose, hormone levels and so on. I'm not sure I 100% agree with the thoughts he currently has on what is causing what, but the tests should give us a whole lot of info to go on.

I will change GP, but not before I go tear a strip off him once I know what is underlying everything. what makes me really mad is that I can afford to see people like Prof Farid but not everyone can, and it is disgusting that real specialists like him should be stuck with boring cases like me when I am sure I could easily have all these tests etc at my local doctors.

Still better to be mad than in tears which is where I was on Monday

Thanks all

Squiffy, well done for seeing him then when you know what's wrong you can go and rub your ignorant GP's nose in it. My sister's endocrinologist wrote her GP a dreadful letter!!!.Thank goodness for mumsnet. I hope you get well really soon and are fighting fit for the summer and able to enjoy your darling baby and 3 yo and dh!!

Hypothyroidsm is physiologicaly normal after pregnancy. To be honest I think your GP has done the right thing - the chances are your thyroid levels will resolve withot treatment in the next 6 months. Once you start treatment you can't ever stop.

If I was in your situation then I'd have a retest in 6 months and see where I was then.

I don't think eating only 1000 calories a day is healthy. Your body could be going into starvation mode where it is hanging onto all the calories to conserve energy. You should eat about 1400 calories a day and increase your exercise. 1000 calories a day is a sure fire way to stuff up your metabolism.

And I wouldn't take the kelp tablets either. Your metabolism will become reliant on them and you will have to take them for the rest of your life I believe or if you stop taking them then your metabolic rate crashes = weight gain.

has a thyroid autoantibody been done? if the results are low normal now, the autoantibody may indicate the liklihood of you having early hypothyroidism, or indicate the liklihood of whether it will happen in the future.

Tissy and stripeyknickersspottysocks are you Gp's by any chance? If you had also felt like this and been affected by your thyroid, then I can't imagine why you would tell someone who is feeling so ill to wait?

stripeyknickers - I was on a 1,500 diet and the weight PILED on. Seriously. 5 kilos in 4 weeks (even though I am at work fulltime and running round all day). that is why I want to HOWL at people who tell me this is normal IT IS NOT. The diet I am doing is low GI, mostly fish and dark fruit and wholemeal stuff. I have kicked out dairy and make everything I eat from scratch. I don't smoke, I don't drink alcohol, I don't touch anything with sugar in it, I don't go near caffeine, and my main drink of the day is whatever I boiled my veg in the night before. When I want to treat myself I crunch on a dry weetabix. I dropped the diet by 100 calories at a time and it is only now that my weight as stabalised - at 850 cal a day. And I know full well that at that level of course I'm going to have shit matabolism and feel faint. But there are no other options open to me that I can see. After DD was born I was a size 16 and my weight has now stabalised at size 20. I can't eat any more without it going up (I know because I tried again about 4 weeks ago). Hence despair in original post. It's this kind of stuff that my GP just doesn't believe, and I can't seem to convince him that I'm not squirrelling doughnuts away or something. Hell I don't eat that kind of shit even when I'm not fat!!!

So anyway, we'll see if Pro Farid finds anything. One of his tests involves a day of fasting so at least I might drop a kilo that day

Thanks for kelp advice - i had been set to take it then saw loads of stuff on internet that seemed to be contradictory, so I'm taking nothing but vitamins at the moment.

StripeyKnickersSpottySocks - not sure where you get the info that once you take thyroxine you can't stop

Kelp doesn't directly affect your metabolic rate either, it provides iodine, potassium, magnesium, calcium, and iron. Your body needs the iodine to produce thyroxine

Squiffy - glad to hear the private doc has started investigations for you

Here amongst other places.

www.pjonline.com/Editorial/20000812/education/thyroid.html

Can't do proper links - sorry.

When my dd was about 6months old I went to see my GP with all the symptoms of hypothyroidism and thats what he told me. My levels were borderline and he said wait 6months, even though I was feeling quite poorly.

Within 6 months my levels were back up and I was feeling better.

The only thing that hasn't resolved is the weight. Like Squiffy I don't seem to be able to lose it, and will put it on in a blink of an eye. But I know its not related to my thyroid as the levels are normal. If I eat about 1500 calories a day and run then the weight stays stable. But slightly more than that or if I don't run it creeps up. I tried eating less calories and nothing happened, then when I went back to eating 1500 calories I put weight on for a while- I believe because I'd be starving myself previously.

I hope your private doctor can do something for you.

hello squiffy, I was wondering if you had heard anything from dr Farhid? How are you feeling?

Please be careful with kelp supplements and other natural rememdies which contain iodine. As someone with Hashimoto's Thyroiditis (autoimmune thyroid disease), I was advised to avoid iodine supplements because this fires up the thyroid gland to produce thyroxine, which in turn makes the thyroid gland more of a target for the thyroid antibodies to attack and can send the antibodies sky high. At diagnosis, I had sky high antibodies, dodgy liver results and other infection parameters were high. One year on, on thyroxine and having reduced iodine intake, everything had returned to normal and I feel very much better.

Well I've done my fasting, collected my urine and given up my blood, and am now sitting back and waiting for the results. I seem to be getting tested for everything under the sun and have found there are some nasty little hormones about that f* you up more than your mum and dad ever did (or perhaps not, as most hormone imbalances seem to be genetic...) never even knew that things like Cushings Syndrome even existed until I checked out what I was being tested for.

Anyway, I now have to wait until the 29th for all the results. Will report back.

Good luck.

I told 'em I was ill.

Turns out it wasnt my thyroid but all related to blood sugars, and some of my results were off the scale. I have been put onto diabetes drugs straight away, as am apparantly not very well. Achieved one reading of something or other that should have been around 30-60 but in me was running at 2.3 (lowest result Prof Farid has ever seen apparantly). Am told the need for immediate medical intervention very clearcut.

Apparantly I should feel dramatically better in a matter of days.

So all's well that ends well, but am very miffed that because of disbelieving GP I had to pay close to £800 to find all this out

good god squiffy!

Well done and hats off to you for pursuing it and I sincerely hope you'll be feeling better very soon xxx

I can't believe how often it seems to be that the patient has to be the one doing the diagnosing nowadays.

Let us know how you are!