Devastated by endo appointment, he thinks I have CFS. What next?

Hi all,

This morning I had a long awaited appointment with an endocrinologist. Background: long history of hypo symptoms, borderline blood results. Looking at my blood results, posters on here think I'm probably hypo.

Endo says no. Hypo symptoms are dead common and 1/3 of people in the street would be diagnosed if you went on symptoms alone. Possibly subclinical hypo, but a trial of thyroxine would likely produce no effects or just a placebo. He suggests I have CFS. To be fair to him, he was great; actually listened and took me seriously, but CFS would be the worst possible diagnosis - no hope of any relief from symptoms that have driven me to the brink of suicide. It's only this site and the hope of today's appointment that has kept me going for the past few months.

So. My plan before the appointment was to buy some NDT online and start self medicating. Is it even worth doing that any more or just resign myself to a life as a fat, knackered drain on my family?

26 Replies

  • Hello,

    Do you have a copy of your blood test results? If you do can you edit your post and post them in the form of:

    test result (range)

    e.g. TSH 5 (0.40-5.5)

    If you don't have them you are legally entitled to ask for ans obtain a copy of them under the Data Protection Act 1998 from any medical practitioner who has treated you or seen you. If you are challenged by a receptionist on why you want them state simply "For my own records and anyway I am legally entitled to them under the Data Protection Act 1998". They can charge you and/or ask you to do a Data Subject Access Request. If they ask you to do the latter or you have any other difficulties getting them come back and start a new thread so you can get help in obtaining your records.

    In regards to CFS it is a "syndrome" and not a diagnosis. It is a short hand used to tell people particularly women that we don't want to spend money on treating your condition.

    There are NICE guidelines which means you can argue and push for treatment however without your blood test results none of the posters on here can give you the relevant information so you can argue your case.

  • Thanks Bluebug. My most recent results (April)

    NHS results were:

    TSH: 5 [0.3-4.7]

    Free T4: 13.1 [9.5-21.5]

    Then Blue Horizon test done a couple of days later were:

    TSH: 3.63 [0.27-4.20]

    FT4: 13.23 [12-22]

    FT3: 4.02 [3.1-6.8]

    TPO: 8.8 [<34]

    TgA: <10 [<115]

    I think you're right. CFS seems more an admission that they don't know what else to do with you than an actual diagnosis. I refuse to live the rest of my life feeling like this, which is what CFS would mean.

  • If the NHS won't help you then you do need to help yourself by self-medicating has Clutter as indicated.

  • i would do natural things to improve my thyroid, rather than be on meds for the rest of my life. You are negative for autoimmune thyroid disease. stopthethyroidmaddness website had an article which showed step by step how to use nutrients to normalize thyroid levels.. i think Heloise, was the one with the info, link. I wish i was in you boat and had the chance to do this and idid not have hashi's.

  • Well thanks for the support, Faith. :| I very much doubt you would want to be in my boat; feeling steadily worse for nearly 25 years, with symptoms that quite often leave me feeling suicidal. The frustration and desperation are indescribable. I have tried 'doing natural things' many, many times, without success. Taking meds for the rest of my life would be bliss if it sorts out the problems. Frankly, if chopping off my left leg was guaranteed to relieve them, I'd give it serious consideration. I wouldn't wish Hashi's on anyone, and I'm sorry that you are suffering with it, but at least with a diagnosis comes the recognition of an issue and a plan to treat or manage a condition.

  • What i meant was , that if you do not have hashi's, you can self treat and do very well. Maybe you need t3 on its own, no t4. But having autoimmune, means for many, no med helps symptoms. It means more diseases, if you do not stop it. You can possibly use nutritional supplements to get your thyroid working again..maybe you are low on iodine or something. I may no longer have a chance for that. My pituitary was become damaged in this whole mess, which took away my other hormones with it. I am dizzy, rapidly aged and my vision is failing, swollen all over and in pain. I am no longer the same person, in personality and have no energy, insomnia for 6 years now. I got sick in 2008 and have been thru 4 endocrinologists, who fail to even do the right tests to determine which hormones i need. The swelling may be the hashimotos, the hyper swings too. The only thing that keeps me going, is to find out if i can produce thyroid hormone, get off the thyroid meds, get rid of the hashi's. My thyroid is shrinking from lack of use, my TSH is suppressed badly, which is pituitary damage. I am to see Endo. number 5, who specializes in pituitary , next month.

  • With respect faith63 how do you figure it's worse having Hashi's? With a tsh of 5, all the usual symptoms and no hope to ever be treated what linesandlines is going through seems just as bad to me. But in any case it isn't a competition, we're all here because we feel ill and want to get better.

    'Natural things' are all fine and good but if you're low on hormone nothing will replace that (said by someone who delayed recovery doing a lot of 'natural things' instead).

  • Thanks Punctured - good point well made. What is striking about this forum is how supportive it is - it's not a competition everyone is taken seriously and treated sympathetically, which is brilliant.

  • I am not looking at it as a competition, but i do think people are so lucky when they have intact immune systems and everyone with hashi's, i would think, would agree with this.

    It is worse having autoimmune disease than not! She has a real good chance of turning things around by addressing what is causing the dysfunction. She can find a functional medicine doctor or do it herself. No, doctors don't understand low thyroid or hashi's. Mainstream medicine does not address either.

    Hypothyroidism defines a state of sluggish thyroid function and metabolism.

    Hashimoto’s defines an autoimmune disease process which can result in symptoms of hypothyroidism.

    Another way to put it: Hypothyroidism is a problem with your thyroid gland: Hashimoto’s is a problem with your immune function.

    Hashimoto’s patients will eventually see a rise in either or both of their thyroid antibodies, called Anti-TPO or Anti-thyroglobulin. (We have noted that a large body of patients have “some” antibodies below the range without having Hashimoto’s, by the way, nor do they see it happen later.)

    The majority of Hashimoto’s patients need to avoid gluten: those with regular hypothyoidism often don’t need to avoid gluten (but may manage their intake due to the high levels of modern gluten levels in foods)

    Though both sides can have inflammation, Hashi’s patients tend to have more frequent and higher markers of inflammation due to the attack on the thyroid itself. Regular hypothyroid patients ‘may’ see inflammation markers due to atherosclerosis from the lowered metabolism or higher concentrations of triglycerides.

    Hashimoto’s patients can find themselves with the onset of other autoimmune diseases, especially as they age.

    Yes, low hormones can often be increased, with certain interventions...if the actual gland is not damaged. Inflammation can cause low hormone levels, gut issues too. Just because it did not work for you, does not mean it won't work for others.

    I wish every day, that i could get out of this, my damage is permanent. This person has a real chance and should be grateful for at least this much. I am sorry that anyone is suffering. She has not gotten the right help and needs to self treat and research.

  • To say that someone whose situation is different than yours or mine 'should be grateful' is making a lot of assumptions. It can be easy to fantasise that others have so many more effective options, and we might feel like if we had those fantasy options we'd really make the best use of it, but in reality we're all doing the best we can.

    I'm sorry that you're ill, a lot of us are, but everyone has their own struggle and it makes sense to support each other. I do hope you feel better soon.

  • Linesandlines,

    Looking at your BH and NHS results from 4 months ago your TSH was high, FT4 low in range, and FT3 low. I think you probably will benefit from self medicating. A three month trial should be long enough to feel some improvement.

    Have you been supplementing methylcobalamin and vitD as advised?


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi Clutter, yes I have, but haven't noticed any effects. I've just bought some Nature Thyroid, so will give it a go. Fingers desperately crossed that it helps. The endo said thyroid meds have an inexplicably large and long lasting placebo effect, but at this point, even a temporary placebo effect would be very welcome.

  • Linesandlines,

    Endo is talking out of his rear end! If thyroid hormone makes you feel better it's because you need it. Placebo effect doesn't last long.

  • I agree with Clutter! What nonsense.

    My placebo effect has lasted 3 years so far & I'm carrying on with it :-)

  • linesandlines 'an inexplicably large and long lasting placebo effect' aka drugs that work! Lmao!

    'Inexplicable' = not science.

  • Yeah, it sounds great! :D

  • In this previous post from 4 months ago

    Your B12 was low, - did you supplement? (Including Vitamin B complex as well)

    Also you were waiting for vitamin D test result back. What was the result? Are you supplementing

  • Hi Slow, my Vitamin D came back at 51nmol/L, where 50 is the threshold for adequacy. After 2 months of supplementing, it stayed the same, blipping down to 50.

    I was supplementing with everything suggested here, but stopped about a month ago so as to present a worse possible case for any blood tests today. I'll get straight back on them all!

  • How long has you been supplementing, and by how much. It doesn't look like you were taking enough, unless it was only after just a month or so.

    Or perhaps not absorbing .......I suffer that issue, as I have gluten intolerance/silent coeliac. (Only just diagnosed after 20+years of hell!)

    I have found (after a tip from endoscopy nurse) that oral vitamin D mouth spray by Better You gives me much better uptake, than soft gels.

    Have you been checked for coeliac and/or considered going gluten free (even if not Hashimoto's)

    Considered Leaky Gut as an issue ?

    You can buy an excellent app VitaminD (costs about £1.50)

    Fill in your Vitamin D then offers very simple and easy graphs demonstrating clearly where levels are - good for showing GP's / endos.

  • Are you taking 5,000IU of vitamin D3 as a minimum? Anything less will not raise your levels.

  • Just checked, and it's a 3,000iu spray bottle. I've only been having one spray a day, so will go to 2.

  • i was also told i had fibromyalgia and chronic fatigue syndrome, like they are separate disease, which i don't believe. The rhuematologist told me that missing endocrine hormones do not cause pain or fatigue!

  • A copy of the letter from the consultant to the GP just arrived. I show 'no signs of hypothyroidism whatsoever'. That'll teach me to have the HYPOTHYROID tattoo on my forehead removed! He says my problem is definitely not endocrine, is 'pleased to report that all her blood tests are normal' and is sorry he can't be any more help.

    So am I.

    So that's that. Endocrinology have washed their hands of me. I will still try the NDT that I've ordered, but it's getting harder to believe that there's any chance of ever feeling well, or even functional.

    One interesting thing, he did say my Vitamin D has dropped to 25 - it was 50 in June. Seems weird for it to fall over the summer.

  • If your vitamin D is 25 why didn't he offer you any treatment?

    Sod them sort yourself out. Doublethe vitamin D then start the NDT.

    Start a new thread when you start the NDT with your results in them so you can get advice on how to increase doses, when to test etc

  • Will do. Thanks so much, bluebug. Sorry for whining on, I'm mostly trying to convince myself that it is hypothyroidism despite the constant medical rejections.

  • You are NOT whining on. You just got doctors who back each other up and refuse to treat you.

    I had that and it was 2 of the newly qualified staff who didn't toe the line. I know they both got in trouble with their boss due to how one ushered me out of an appointment with her.

    Luckily for me I was able to pull myself together to sort myself out with help from others.

    You are starting this process now. In a year or so time after you have read, ask for help, taken advice and taken care of yourself you will feel much better.

You may also like...