Thyroid

[lainie8484]

U probably think im stupid because ive had an underactive thyroid for years and im now on 120mg of levothyroxine but i read peolple on hear talking about there results ive never known mine the doc justs tells my levels are good or my meds need to go up.should i be asking .he says my levels are fine but ive not felt any better on the meds.any advice

[Marz]

You are legally entitled to have copies of your test results. Otherwise you will not know what was tested. Often just the TSH is checked and that is not the full story. You also need to know the result of the T4 & T3 - so you can see if your thyroid meds are working. Also have anti-bodies checked - Anti TPO & Anti Tg.

You can also have test kits sent to your home from Blue Horizon. Details on ...

thyroiduk.org

Thyroid 11 - is popular as it also includes B12 - Ferritin - Folate - VitD.

Are you taking any other meds ?

[JOLLYDOLLY]

Hi iainie8484,

You are not stupid at all. For what it is worth, I have always had a thyroid condition but it is only in recent times that I started asking for my results and ranges. If you ask, I have noticed it does seem to keep the GP/Dr on their toes as it were. I will not accept "fine or normal" now.

So if you are still feeling crap, make an appointment and tell them how you feel. When they look at your results and try and tell you that you are fine, say that you are not and ask for the most recent results and ranges. Even for a retest.

Out of curiosity, have you had your ferritin levels checked for B12 deficiency, anaemia and vitamin D deficiency? These conditions walk hand in hand with thyroid conditions sometimes and have similar symptoms, especially tiredness and fatigue, achy muscles etc. Ask for them to be checked as well. Vitamin B12 deficiency can go undetected but is essential for it to be addressed for your well being.

It always amazes me how the "Professionals" and people in general, are able to tell you how you are feeling. You know how you feel and feeling just fine is not acceptable. You deserve quality of life.

Hope you can get your results and be able to move on from there. Let us know how you get on.

Take care

[rhultra in reply to JOLLYDOLLY]

Well done everything seen an endo many gp visits tell them all feeling dreadful and they say nothing we can do all bloods show levels OK and I have auto immune problems so they can't or won't do anything more even changing my doctors didn't help treated awfully like a hypochondriac

[JOLLYDOLLY in reply to rhultra]

These Dr/Endo's know nothing really. They categorise everyone the same. I mean what is "ok, normal, fine" that does not give specifics does it? I could write a whole book of my experiences with the so called "Experts" - No empathy or understanding anymore. Last July, I actually asked a Endo whether she had a thyroid condition herself - she looked at me gone out and said "No" - so I did swear out of frustration, but it went something like "Well how the */@k do you know how I feel (pause and no answer), you are categorising me as you do others and at this moment in time, I do not give a fig what Jo Blogs is doing or how they are coping, because I am here about me only blah blah blah" - she just could not answer me but to go on about research which was nothing to do with me and completely unfounded.

My latest results shows I am on the right dose and that both the T4 and T3 work well together. At the moment I am not having any problems, but I would just keep fighting. I actually reported the Endo to the hospital in the end. It did not get me very far and she denied most of what she had said. But what did make me smile is that she asked for me to find myself a different Consultant. Basically through her teddy out of the pram.

I am not a confrontational person, but when it comes to health issues these days, I am. So keep fighting, you are not a hypochondriac, you are someone who wants to be heard and for someone to say, "yes I am here to listen and help you" At the end of the day, you want quality of life.

You are not on your own rhulta! When you have your blood tests, ask for the results and a copy of them, for the current ones and the last two for your records. There is bound to be someone here that understands them. I get confused sometimes to be honest.

Have they checked your ferritin levels etc for B12 deficiency, anaemia and vitamin D deficiency? Might pay to get them done too!

Take care

[CSmithLadd]

The lab has been instructed to send your results to your doctor. You should be able to instruct the lab to send you a copy at the same time they send it to your doctor. It's all electronic, or so it should be -- if the doctor says you don't need to have the results, ask him why he thinks you don't need pertinent information regarding your health. Then, ever so confidently, remind him that you are not his child and you won't tolerate being treated as such.

Your doctor will then provide you with the lab results.

reallyfedup123 is so correct in that if you are not fully aware of your lab results, you will be treated according to protocol instead of as an individual. Test results are usually limited to tests that are incapable on their own to indicate the status of your current thyroid hormone health.

With information from the lab tests, you will be able to order your own tests and get the information you need to improve your health, if doing so becomes necessary. With the proper information, you might be able to force your physician into prescribing better treatment for you by informing him of what you have learned and how it might improve your care.

We all have to be proactive in our own healthcare. It is in our best interest to care for ourselves as much as we possibly can. It is the fluctuations -- the ups and downs in our hormones -- caused by doctors who don't know what they're doing and either keep us at the same dose forever or reduce dosage of thyroid hormone just as we're beginning to once again see the light of day out of the fog of hypothyroidism. We are at our most well when we educate ourselves to know what it is we need and when it is that we need it. Then we don't have the anxiety and frustration of "Why?!"

One of the best things ever is to be the captain of your own ship. That includes being in charge of the ship known as your own body. Eliminating the condescending negativity and frustration caused by doctors who not only irritate you to no end, but you have to pay for the pleasure! -- is a first big step. You can either get another doctor or try to educate the one you have to be a better physician.

One ignorant doctor at a time, all over the world, we can make great progress this way. Or we can discover that our doctors don't have our best interest in mind at all. Either way, we learn and get better every step of the way because at least we know what's going on. If need be, we certainly can figure out what it is we need to do.

Together, we'll get there.

Hugs!

[SeasideSusie Remembering in reply to CSmithLadd]

CSmithLadd

"You should be able to instruct the lab to send you a copy at the same time they send it to your doctor. It's all electronic, or so it should be ..."

It doesn't work like that here in the UK. We don't pay our doctors at the 'point of delivery', we pay for our NHS health care through our taxes and contributions and so it doesn't work the same as in the US.

We, as patients, have no contact with the lab. The GP surgery takes the blood and sends it off, the results are returned to the GP. Even though it is our health and our results, we need a good, kind and caring doctor to discuss and explain things in detail to us and so many of them aren't like that. Those of us who tend to push for further discussion and explanations can become labelled as 'difficult', however politely we do it.

Patients are legally entitled to a copy of their results under the Data Protection Act, some surgeries give it willingly with no problems, some are extremely awkward about it and make you pay and wait.

Some parts of the UK have online access for patients to see their results, make appointments, etc. Not all. My surgery doesn't even have a website, and I don't think my part of the country has online access for patients at all (which is NHS Wales, different from NHS England).

It's up to us as patients to be confident and assertive and get the proper tests, treatment, diagnosis, etc. But we can't demand anything. Doctors think that they are gods, some expect to be treated as such.

We can walk away and find another surgery (if there are any more in the area) if we're not happy, and the GP can easily find a reason to remove us from their patient list if they wish. Hence finding the right way to make a request is crucial.

[nightingale-56 in reply to SeasideSusie]

SeasideSusie not so many years ago, when I took my son to the Endo, he used to senda copy of a form with all diabetic and thyroid results on it. One copy went to the GP, one copy the Endo kept and one copy he sent to me. So sensible, then you could try and improve on those results. All it cost extra was a stamp. Saved time and extra work.

[SeasideSusie Remembering in reply to nightingale-56]

I think that's what they all should do nightingale-56 . Include the patient in everything, send copies of everything to them. I think some doctors still don't like patients knowing or understanding anything, like so many GPs just say 'normal' or 'fine' when going for results of thyroid or other tests, although there are some good ones who will explain things. We have to get into the habit of asking for details.

The only time I've had anything copied to me was when I saw a consultant privately and I made sure I requested to be copied in on the correspondence he sent to my GP, which I was.

My most recent experience was after a CT scan. After a month I asked my GP had the results come back, no and he wrote an note chasing it whilst I was there. A month later I asked again, no result back so he wrote another note chasing it. It took 3 months altogether and that was just to him.

[veryangirl44]

Far from it. I only have started asking for results etc and I have been underactive for over twenty years.

It's only since finding this site that I really knew what my results should be and when and how to take my tablets properly.

I used to look at people and think you just wake up every day and get up go to work or go for a jog etc and be jealous as to why I still feel so naff.

My advice is write down how you feel and the questions you want answering from the Dr and try find the right levels for you and make sure you vitamin levels are optimum too.

Don't be afraid of taking second or third opinions too.

Do as I say and not as I do ha ha. I completely collapse in the drs every time and always come out feeling worse than I went in. But I come back to this site and listen to great advice and always feel better.

Make sure you get print outs of your results to keep a track.

Take care x

[dawnydawn1]

Hi Lainie8484

I am the same as you.

I joined this group just last Thursday and noted how everyone know their results on every level I am having bloods rechecked on the 15th of the month and seeing a doctor on the 24th and going to ask for my results plus checking what they have tested me for and what I want to be tested for.

I Need to ask about leaky gut too never been mentioned to me before but it's quite common against us tyroid suffers.

So anyway your not alone I am too in the dark

[Marz in reply to dawnydawn1]

Don't think your GP will have knowledge about leaky gut ! You could be lucky 😊

Good luck with your Doc. Will look out for your results ...

[FlippinThyroid in reply to Marz]

Many junior Drs working alongside younger consultants are aware of leaky gut and also gluten intolerance even if tests show negative results. Mine does. Yeah!!!! I go to Barts Health for Hypertension and Calderdale in Halifax for Hashis and both are switched on. They seem to have restrictions placed on them which means their hands are tied and they are just as frustrated (sometimes) as we are.

[Marz]

Just read your Profile and saw you have gut problems. I have had Crohns for over 43 years. There are loads of receptors for T3 in the gut so if yours is low then it could help to explain things. I take T3.

Also VitD is an anti-inflammatory steroidal pre- hormone - so much more than a vitamin 😊 I also take lots of VitD. It would be good to know your levels ...

Happy to help ...

[Katepots]

See you've had good advice so I won't reiterate but just wanted to say I was in the dark too for years until my friend gave me a book then I realised how important thyroid/vitamins are...

Some good reading;

Research leaky gut

Chris Kresser website

Dr Datis Khazzarian books

Mary Shomon books

Susan Blum The autoimmune recovery plan (if it turns out you have Hashimotos Thyroditis which is highly likely if you have gut problems)

There is a big link to the gut and a large percentage of people with Hashimotos are found to have the Epstein Barr virus or similar so good to get checked for bad bacteria and parasites.

[FlippinThyroid]

GPs take an oath when they pass their medical assessments which commits them to very specific ways in which they should treat patients. Following this link, patient.info/doctor/medical...

And reading between the lines you can see that "fine" and "normal" are not what they signed up to. You have some amazing responses here and I would suggest you take a deep breath and hit them with it. Good luck.

[OllyJ]

... and if you have Hashimotos Thyroditis then I recommend at least a gluten free diet. I was very ill with underactive thyroid 5 months ago. I started a ketogenic lifestyle and within a month ALL of my symptoms went. (Plus all the extra weight)

[Treepie]

I can see my results on my pad .Your GP should be providing a similar system for appointments and ordering prescriptions as well as test results.

[Ruthi]

Your choice. Lots of people want to accept what the doctor says, and not think about it too much.

Me, I'm an awkward cow. If I don't feel better, I question and push till I understand, and find a way. I had to fight for a diagnosis, and I haven't forgiven the GP who left me sick for years, while my relationship crumbled and I lost my job. When the medicine didn't work I pushed and pushed for something better. But I eventually had to self medicate, and the constant battles with the doctor are hard. I hope I never end up in a home because they will kill me!

[SewingBee]

I'm exactly the same. I don't ask because I'm of the understanding that if the GPs don't fully understand it then, with my dizzy head, I sure as hell won't. I did return to him recently because I had more severe symptoms and he suggested I reduce slightly and that has really helped although it's taken 3 months to see the benefits. I have never come right but all I can suggest is that you know your limits and get some relaxation when you can. I used to have 150 micrograms but now down to just over 100 and I split my 25s as taking a whole one odd days of the week makes me very ill, ie hot and disorientated etc etc.

[Traybay72]

I am exactly the same!!! Just go with what dr days but never really feel right.

[mistydog]

I was hypothyroid for 18 years before it stopped working for me and I started to research. I accepted fine and normal until I had a problem (usually back ache), then my doctor would increase. I moved surgeries and my new doctor said I was over medicated (luckily my previous doctor listened to me and not the bloods), and everything went downhill from there. So you aren't stupid. But don't expect your doctor to treat you properly, learn about your condition and see what you can do for yourself.

[Mazzahk]

I know many others have said the same but I was diagnosed with an underactive thyroid about 10 years ago and it's only in the past few months since finding this forum that I've asked for my test results and have been more active in managing my health. The great news is that it is working after years of being fobbed off as "normal" by doctors and I'm feeling much better.

I find that taking a notebook with questions I need to ask (mostly based on the information from this forum) is useful. I just make my way down the list and tick them off and make a note of the answers. I find doctors have a different attitude when I do this

Good luck and hope your health improves!

[PashaW]

A little bit of research can make a huge difference.

I've been diagnosed for 14 months and have been learning all the time. I find GPs within the practice vary greatly. When my TSH went below range my levo was instantly reduced. The next GP I saw told me that I couldn't blame hypothyroidism for all my ailments, but agreed to retest TSH only. I managed to persuade the next GP to allow me to go back to old level of 100mcg from 75mcg twice a week as my levels had risen slightly.

When I had my next 6 weekly retest I went for an appointment fully armed. I listed all my symptoms (A4 sheet) and made a note of what I wanted to say. I saw a different GP (who originally diagnosed me) and her attitude was completely different. I told her I knew I was within range, and she interrupted me to say that everyone is different and some people feel better lower in range. She agreed to put my levo back to 100mcg and said that years ago they used to medicate by symptoms, and she was happy to increase my dose to make me feel well providing T4 was not over range. When I said that I believed T3 & T4 should be high but not over, she agreed and has requested on my next test that TSH, T3 and T4 are tested. She used the phrase - T3 is needed by every cell in your body so an underactive thyroid can affect every function. She also agreed to retest iron as I'm only just in range.

So, sorry for the ramble, but suffice it to say I'll be making sure all my future appointments are with this GP. I think that going in prepared helped me to show that I took my condition seriously and wanted to get back to feeling well. I didn't need to shout or scream, just appealed for her help to make me well.

Get your results, do a bit of reading around, write down your symptoms and go and speak with your GP (tears help). If that GP is not responsive, try a different one in the practice. Good luck, you can feel better and have a better relationship with your GP.

[hachiko in reply to PashaW]

Good speech!

[Marz]

Hey lainie8484 - where are you ? You have had some great replies

[Eddie83]

The average doc has very little knowledge about how the adrenals and thyroid work. Yes, you should be receiving a copy of every test he runs and then putting the results here, so you can be advised. The statement "you are normal" is meaningless.

[Agne]

healthmatterslondon.co.uk/h...

here you can find an answer for the thyroid problems how to recover and not need a medicines for life