Thyroid UK
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Have I been fobbed off?

Finally got to see the endo today for my results (posted on here a few months ago).

Basically he’s said all the tests are showing there’s nothing wrong, so ‘nothing wrong with my hormones, which is reassuring’ - his words not mine. I did say that if it was my thyroid the fact I’d been self medicating with NDT would suppress my TSH any way.

He agreed but repeated that my blood tests & cortisol tests were all showing normal. He’s discharged me with a diagnosis of ‘chronic fatigue syndrome’ & will be asking my GP to refer me to the chronic fatigue clinic.

Have I been fobbed if or does this sound right? Looking at the symptoms, I do have the constant tieredness but it’s never stopped me doing anything, I’m getting regular headaches, I’m starting to get joint pain again(first time since starting NDT), but all these could be my thyroid too.

I’m not sure where I go from here, I can’t really afford my own tests at the minute as hubbys just been made redundant.

Thanks in advance x

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I believe you have been fobbed off. CFS etc can be connected to the thyroid gland. I will put below a post I did last week.

Please post a copy of your results, with the ranges for comments from members. Doctors believe if we are 'in range' everything is fine, when we need a TSH of 1 or lower and FT3 and FT4 towards the top of the range.

Do you have your blood tests at the earliest time possible,fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps the TSH to be at its highest as it drops throughout the day.

thyroiduk.org.uk/tuk/about_...

The aim is a TSH of 1 or lower with FT4 and FT3 towards the upper part of the range but these two are rarely tested.

thyroiduk.org.uk/tuk/about_...

I am sorry your husband has been made redundant and that will cause both of you more stress and worry.

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Thanks for the reply. I didn’t repost results as there’re already on here & I’ve had comments. But I’ve put them below, however they are 3 months old now. They were all taken within the correct protocols.

TSH <0.03 (0.2 - 6.0)

FT3 4.9 (3.5 - 7)

FT4 13.5 (10 - 2?)

Iron 22 (5 - 33)

B12 1080 (180 - 910)

Folate 10.84 (>5.4)

Ferritin 39.1 (10 - 2?)

Magnesium 0.8 (0.7 - 1)

Potassium 4.4 (3.5 - 5.3)

Prolactin 257.9 (<400)

Testosterone 1.2 (1.5 - 2.6)

9am Blood Cortisol 603.89 (120 -620)

24hr Urine Cortisol 65 (<165)

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Yes, you've been fobbed off - and in the worst possible way. By labelling you with CFS your endo has made sure that your doctors will never address your current symptoms again, nor will they suggest any treatment for them. If you are currently getting any treatment for symptoms that haven't been relieved by that treatment, there is a risk you might get that treatment taken away.

The usual "treatment" for CFS in the UK is a peculiar form of CBT - Cognitive Behaviour Therapy - in which the therapist isn't trying to help you. They are, instead, trying to convince you, browbeat you, and bully you into accepting or admitting or agreeing that you have "false illness beliefs", your symptoms are not real and are all in your head. For people who are on benefits going through this CBT can become a condition of continuing to receive benefits. If you are still suffering symptoms after the CBT they will still reduce or stop the benefits anyway, because they - the DWP - say you are choosing to continue to be ill.

Another part of having CFS in the UK is GET - Graded Exercise Therapy. It makes many people much, much worse. If your fatigue is caused by depression then you might actually benefit from it. But if it is caused by low thyroid hormones and/or nutrient deficiencies then you probably won't.

I would move Heaven and Earth rather than accept a diagnosis of CFS.

The CDC - Centers For Disease Control And Prevention in the USA - have recently removed CBT and GET as recommended treatments for ME/CFS from their website :

meassociation.org.uk/2017/0...

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So what’s my next move?

Stop NDT & go back in 3 months & hope that my TSH is high enough to justify a diagnosis?

I’m at a loss as to what to do now?

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These are just suggestions - I'm no expert in how to avoid a diagnosis of CFS. I think such a diagnosis might be heading my way in December.

I would tell your doctor and your endo, possibly in writing, that you completely reject the notion that you have CFS. You could ask on what grounds your endocrinologist has diagnosed you with CFS. Until he explains himself you have nothing to argue against.

CFS is generally classed as a psychiatric condition in the UK, even though the WHO classifies it as a neurological condition, and therefore you could ask what your endo's psychiatric qualifications are - But you might want to think very carefully about that one - Getting too angry with the doctors could backfire.

I believe that CFS is a diagnosis of exclusion i.e. they test for everything that might remotely be involved in the patient's symptoms, and if nothing comes back positive then they say you have CFS. Basically, it is a case of the endo saying "I don't know what is wrong with you, I don't want to admit it or be blamed, so I'm going to blame you and refer you back to your GP, so I never have to see you again."

Is he doubting that you have an underactive thyroid? In an ideal world he would accept that your TSH was over the range, and try you on a variety of thyroid meds - Levo, NDT, T3, and possibly some combos of these. He would test your cortisol with something more informative than just a single blood test, and he would check your sex hormones. There are other related hormones coming from the pituitary and the hypothalamus which could be low. And of course you could have low nutrients which need optimising. But of course, these things only happen in cloud cuckoo land, and it is much easier to blame the patient and get rid of them.

If you came off thyroid meds now and got re-tested in three months you might be lucky and have a much higher TSH that would get you an official diagnosis. But I tried the same thing, my Free T3 and Free T4 dropped very low in range, but my TSH was only about half of what it had been, so I was further away from a diagnosis of overt hypothyroidism than ever.

If your doctors are going to muck you about and actually make your problems worse (as they appear to be doing by diagnosing you with CFS) then I would suggest continuing to find your own cures. Consider your diet, your gut health, whether or not you have sufficient stomach acid and/or digestive enzymes. Try making your own kefir, kombucha, and sauerkraut. Make sure you eat plenty of healthy fats.

Something you could do for free, that some people find helpful is to try what this guy suggests :

drrind.com/therapies/metabo...

(I've never done it - it's on my list of things to do...)

I avoid doctors like the plague these days, if I possibly can.

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Thanks human. They’ve done exactly that . I was tested for 16 different things - the nurses were amazed just how many test tubes they had to fill.

He admitted that they’d tested absolutely everything & all hormones were fine - even sex hormones (I’m 45 so specifically asked about these). I’ve got copies of the results somewhere!

I’m pretty much aligned with your way of thinking, back to the research.

Thanks again x

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I fully agree with humanbean Both your FT4 and FT3 are too low and should be nearer the top of the range. Read about why we need these tested:

thyroiduk.org.uk/tuk/testin...

I was never given a blood test for thyroid hormones and was given several different diagnoses (I had none of them) and treatment. I had an op to remove something from my throat and when I came round I was told I didn't have a web in my throat and when I said what is it then and I got no reply.

I was discharged from the A&E after an overnight stay, feeling so awful, with a diagnosis of probably viral with high cholesterol. In fact my TSH was 100 and I got the test myself as it was a first aider who suggested hypo as I was going to the airport.

T4 is an inactive hormone. It has to convert to T3. T3 is the only active thyroid hormone which is needed in our billions of receptor cells Look on T3 as a battery. If a portable radio's battery is running low, it cannot work effectively. Neither can we if T3 isn't optimum.

When we have a blood test for thyroid hormones it has to be at the very earliest, fasting, (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.

They won't diagnose you as your TSH is low but this is from one of our .

thyroiduk.org.uk/tuk/thyroi...

The sad part is that doctors only go by the TSH which is highest early a.m. and drops throughout the day.

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Thank you shaws.

I think my next step will be to get blood test redone with BH or similar & go from there.

How would I increase my FT4 & FT3?

I'm on 2 1/4 grains of NDT currently.

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When on NDT, you can increase by 1/4 tablet every week or two until you feel well. Taking pulse/temp several times a day and if either goes too high, drop to previous dose.

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

Dr L only took blood tests for the initial diagnosis, thereafter it was all on how the patient felt.

The following is some Chapters from Dr Lowe which may be helpful.

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

nebula.wsimg.com/b822d36efe...

web.archive.org/web/2010112...

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Thanks again - I'll have a good read tonight

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I posted this earlier and it is a pity there are not more doctors like Dr Skinner - trained in the 50's and most have now retired and now Endocrinologists have to go by the pharmaceutical companies blood tests alone.

healthunlocked.com/thyroidu...

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This is really helpful shaws - thank you.

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FOBBED OFF big time by an endo who knows less than back of a postage stamp about thyroid ....keep up the NDT and stick with us we know more than all the endos across the UK put together bar avery very select few who are brilliant

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Thank you. I’ve always got fantastic advice on here. Unbelievable that we can’t get the help we need from professionals x

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Nothing like those who have been through the mill or like me have husband dsughter and grandaughters to battle stupid medics for

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Don't you all feel like screaming...again and again posts appear with the same story about the incompetent testing by the nhs. I often talk with women who have all the symptoms of hypothyroidism (masquerading as CFS/ME :-) ) about testing and the inadequacy of the 'ranges' and tsh test and almost to a woman they quote their doctor and take no notice of anything else. I have even begged some friends to have private tests and offered to pay for them but still no go. We are brainwashed by GPs. I gave my surgery a copy of Dr. Peatfield's book to read but nothing resulted. I feel like a lone voice, until I look on this website.

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