Why do I feel so poorly?

[RubyLou]

Flip's sake!! I'm getting so angry - the weather is warming up, yet I'm suddenly feeling cold all the time, my joints hurt, and I doze off at the drop of a hat. I felt fine this time last year - and was even losing weight doing the 5:2 diet, then my GP decided that I was being over-medicated, and reduced my thryoxine. A few months later, and I started to gain the lost weight, and felt cold - GP increased the meds again, but they aren't doing the trick for some reason. Also, a few hours after taking them, I feel physically unwell - even a bit spaced out. Is it possible to become intolerant to them?

Fed up with seeing my GP - she sticks to the NICE guidelines, and doesn't really seem to want to act on her own initiative.

Right, I'm done whinging.............off to browse for some inspirational posts on here

[smith8577]

Sounds like your low cortisol. When your adrenals are not strong enough they can't handle thyroid meds. And you feel worse after taking thyroid meds. I.. have addisons disease I have been through every symptom your describing due to low cortisol. Please go to a endo dr get your adrenals checked. Or you can order your own saliva cortisol test. Google adrenal insufficiency. Hope you feel better soon. Also make sure your not low vitamin d.

[RubyLou in reply to smith8577]

Thanks, I will ring for an appointment tomorrow morning. Thinking about it, whenever I have a chest infection I get prescribed preds, and they are amazing. When I'm taking them, I feel a different person altogether - no aches/pains, lots of vitality. Maybe the clues are there.....................

[galathea]

Hi, so. What NICE guidelines are these? Truth is there arenT any, there is only a statement which was concocted by the bta, and rcp a few years ago, but its full of inaccuracies and is not a properly researched guideline.

Your doctor is free to treat you in any way she sees fit and with any medications she thinks will benefit you.

The period with lower meds may have made you short of other vitamins and minerals.... If you are short of these then the thyroid meds may not work...... How is your iron saturation? Your ferritin level? What level is your b12, D 3.,.. Do. you take selenium?... This is by no means a comprehensive list , I am sure others will chip in with the things I have missed....

Start tracking your temperatures, as per drrind.com, which will give you some clue about what might be going wrong......

You can get right again but it takes a fair bit of detective work.......

X

[RubyLou in reply to galathea]

My blood tests always come back as 'within limits', and my GP will only prescribe what the NICE guidelines recommend - she keeps banging on about it. I take D3/calcium, though I will admit to being somewhat spasmodic (slaps wrists!).

[Totoro in reply to RubyLou]

As galathea said, there are no NICE guidelines for thyroid problems. So your GP is wrong in saying that.

There was paper put together in 2006 by some groups, including the British Thyroid Association:

btf-thyroid.org/images/stor...

these specifically state that

"The document should be considered as guidelines only; it is not intended to serve as a

standard of medical care. The doctors concerned must make the management plan for

an individual patient."

Totoro xx

[lisabax in reply to RubyLou]

Please ask your GP to give you a printed out copy of your results for the last year. They gave an obligation to do this when asked although they may make a small charge for this. If you post these results here others will comment in them. What is 'normal' to your GP may not be normal for you. LB

[stockman27 in reply to RubyLou]

Ruby b e care flu with D3 and calcium is can bind with the Thyroxin and make it harder to adsorb. There are guidelines and your dr is worried they are going to get struck off. Thyroid problems seem to be taken and looked after by the German SS as all the Drs I have seen are woorried about getting struck off. This is why Lyn my not and the thyroid org people are battling to get something done for us.

Be careful taking Pregnisalone its a good drug for short period but it thickens your heart wall after time even on a low dose.

John C

[puncturedbicycle in reply to RubyLou]

Well NICE recommends treating people who are symptomatic with a rising TSH even if 'subclinical' ('within range'), and also recommends a trial of meds which should continue 'if there is a clear improvement in symptoms' so perhaps the gp is telling porkies. cks.nice.org.uk/hypothyroid...

(Oops, I see now that humanbean has posted this already.)

[sidneymark70 in reply to galathea]

So what temperatures are we looking for please? What would be cause for alarm? Also my GP would never give me the time if I started asking all those above questions. And because my results are within (the Essex) guidelines, she'd never refer me to a consultant.

[sidneymark70 in reply to sidneymark70]

I clicked on to Reply to this on Galathea's comments thinking my message would come up underneath but it didnt. Dont understand - my brain fog doesnt help!

[puncturedbicycle in reply to sidneymark70]

If you clicked in 'reply' Galathea will still get the notification if she subscribes to them. It just looks all out of synch, but that's the format, not anything you've done.

[puncturedbicycle in reply to sidneymark70]

If your temperature is below normal it can be a sign of underactive thyroid.

Often the gp will seem very rigid about what they will and won't do, but if you return to say you're still unwell and ask what the plan is to find out what's wrong with you, they may be more flexible than they're letting on.

Even if your results are within range, if she can't explain why you're unwell she must have a plan to find out why you feel so bad. It isn't acceptable to just say there's nothing wrong with you and send you on your way.

If she says it isn't thyroid related, well then, what else could it be? If she suggests you're depressed, you would be well within your rights to ask for a psych referral. Let the psych professionals say whether or not you're depressed.

I think sometimes they send you home as a test of whether you will continue to be a pain in the bum or if you will go home and never be seen again, in which case they can tick you off the list and say you must be okay.

[galathea in reply to sidneymark70]

Have a look at drrind.com. Its not so much the temperature that you are checking, but the daily variation. If the graph looks like the Himalayas then chances are the adrenals are not holding it together. if its a smooth line, with not much variation, (more Dorset than Derbyshire). but generally low then chances are adrenals are ok but thyroid is low. I generally make 97degrees + these days but I used to vary between 94.5 and 96. 95 is the point at which you run the risk of hypothermia.

[humanbean]

This link points to the NICE Clinical Knowledge Summaries for hypothyroidism, if it is of any interest to anyone.

cks.nice.org.uk/hypothyroid...

You need to click on each of the grey tabs on the left hand side of the page. Diagnosis, Management and Prescribing Information are the most interesting tabs in my opinion, but it is probably worth the effort to read it all.

[Sue777 in reply to humanbean]

Thanks for the link. Very useful as I am seeing my GP tomorrow for results of latest blood tests. I have written down the guidelines regarding upper and lower reference ranges in case I need them.

[Malago]

Hi RubyLou, so sorry to hear that you feel poorly & miserable. I too have hypothyroid and pernicious anaemia ...... and several years later was diagnosed coeliac. The thing is that the symptoms you describe I had and they went once I was diagnosed and began only eating Gluten Free foods. Now just check out the coeliac sites and research well. It is possible for folk to have 'silent' coeliac ie without symptoms but also consider that many folk who are like us hypothyroid are Either coeliac or become coeliac! Hope this is helpful to you.

[mado in reply to Malago]

Very helpful malago.

[mado in reply to Malago]

I will check both celiac and silent celiac as I have the above symptoms much worse, I feel cold and sick for days. My Chinese herbalist makes a mix for me and it works instantly. She says it's because I have phlegm built up. I know it. I have severe asthma. Most people on this site have other immune deficiencies. There has to be an answer. How come we put up with such shoddiness from bloody GPS sand what is the answer? I feel a revolution coming up. Good luck anyway loves

[RubyLou in reply to Malago]

Hi, had a colonoscopy not too long ago, and all is fine

[Malago in reply to RubyLou]

Is that where the camera goes up or down ? Usually for a coeliac diagnosis a camera going down (endoscopy) is required. A colonoscopy might have been looking for something else. Additionally coeliac can take time to develop and therefore be detectable from a biopsy. You could have changed in the meantime. Hope you've not felt too bad today and sleep well tonight x

[Malago]

Also meant to say if you Dr says not likely .....push for initial blood test, if negative push again for endoscopy 'cos of silent CD. But under no circumstances go gluten free until all avenues pursued and you've got a diagnosis ...... the absence of gluten will skew the results. And worse than that for most folk who then go back to eating GF just for a test really extra and extremely poorly for the six weeks required to eat gluten foods.

[Wayne1967]

Hi Rubylou, sorry your feeling so bad. I'm exactly the same and getting bad headaches and joint pain, dry cracked skin, tired with no energy and so on, you know how long the list goes. Go back to your Gp and get bloods done for Vit B12, D3 folate, calcium and so on the doctor shoul know what to do. Although I had new blood tests and was told had D3 deficiency but still feel terrible. I'm on 175 levo and test showing normal range but after some small lumps in neck had ultrasound scan and was told had goiters and cists and Hashimoto's thyroiditis. And now waiting for appointment to see an endo. Good luck to you and I hope something is done to help both of us soon. Good luck.

[stockman27]

Hi Ya, this is not going to be an inspirational post unfortunately .

What you are describing is what most of use suffer with. I bet your dr has taken you TSH and its ok?/ The next thing will be anti depressants as that is the nice Guide lines.

If you feel cold like somebody has put a hair drier inside your back then this may be a sign of adrenal problems. I would seek the aid of a private dr but its going to cost you. You could try some DHEA but be careful and start off with a low dose.

but I would prefer you to see a dr to make sure and not self treat yourself.

John

[shaws]

Doctors shouldn't adjust doses due to the TSH result alone. It's how you feel is the criteria. This is a link and the first two questions are self-explanatory.

web.archive.org/web/2010103...

[RubyLou]

A quick update - managed to get a telephone appointment today, and I'm having a general blood test done, plus a test for diabetes, anemia, and one for cortisone. She is being quite thorough.

I shall book a blood test tomorrow, and post the results when I get them