Need to get proper full testing done but cannot afford the expensive private sector and have Gp fed up with me

Hi Newbie here - after nearly 10 years of being pushed from pillar to post with Gps and given diagnoses of CFS/Fibromyaglia/Depression etc etc finally nagged one enough recently to send me to an Endocrinologist. Finally felt hopeful as have suspected all along that I have thyroid issues - so many of the symptoms of underactive and a mother who suffered overactive. My life has been challenging health wise - getting weaker with more and more symptoms piling up. Endo was a mixed blessing. Diagnosed with subclinical hypoT - "yeah at last someone sees something could be out of balance" - BUT am dismissed with no treatment just to go back on the GP circuit for 3 monthly blood testing. All no doubt - based on past 10 years of getting nowhere - to come back as 'normal' in their eyes as before. I asked for my results and got them with most levels just being filled in as 'normal' which I cant trust because I definitely don't feel 'normal'. My TSH was 6.69mU/L and my Free T4 10.9pmol/L with everything else put down as 'normal'. My cholesterol is very high but I eat really well and try and exercise when I can ! Gp wants me on statins which i will not take. So she has offered me 25mg of Thyroxine to try and get rid of me...

Concerned to take that having read some posts here. I really need to find somewhere/one who can test me properly esp T3. I am now 60 and I feel so tired and low most days with all the symptoms

and now have a whole gamut of sensitivities to things. I need to get this sorted. Can anyone point me in the right direction please I would be so grateful.

16 Replies

  • I am hyper but when I was at my worst (TSH <0.03 [0.35-5.5] ) my cholesterol was the lowest it has ever been. Now that I'm in remission and my TSH is climbing (1.5 last time was tested ) my cholesterol is high again.

    I was on statins several years ago and within a week of starting them I could hardly walk and felt mega depressed so I stopped them and told the doctor I didn't want them. I start the day with a couple of bran muffins - recipe from a book called The 8 Week Cholesterol Cure. It's got lots of healthy heart recipes and tells you in there of the under active thyroid / high cholesterol link.

    I know I would feel dreadful with a TSH like yours, I'm not great at interpreting results though and I'm sure someone else who can will come along and advise.

    Do you know the lab ranges for your test results - they should be in brackets next to each result? If you haven't had them tested already you need to get your vitamin D, vitamin B12, ferrit and folates tested too - you want them to be in the upper end of their ranges in order to help your thyroid.

  • I am sorry you've been having the 'run around' with various suggestions of what's wrong with you.

    I'm glad you haven't taken statins because a higher cholesterol is a clinical symptom of hypothyroidism and should reduce with thyroid hormone replacement.

    This is a link and unfortunately Dr Skinner died prematurely and he was a 'one man band' trying to get the Endocrinology Depts to look again at how they diagnose patients. He was doing as he was taught as a medical student as many of his patients 'by word of mouth' found that he could diagnose them by clinical symptoms alone. He was so worried by the 'evidence based way of diagnosing (i.e. the TSH to diagnose alone) and this is how he came to be involved with thyroid patients (and he saved thousands of them). He was a virologist.

    The UK is the only country in the world (as far as I know) to make a patient suffer with all the distressing symptoms which they ignore, and place all their diagnosis on the TSH alone.

    I would take the 25mcg of levothyroxine which is tiny and would supplement with my own levothyroxine. Why should you be left without sufficient thyroid hormones with a TSH which is nearly 7. For goodness sake - why are the professionals playing around? You could develop other more serious illnesses due to the medical professionals neglect.

    Just tell your doctor you are self-treating with additional levo when you go for your next blood test in 6 weeks. Once we begin - a blood test should be done every six weeks with a rise of 25mcg of levo until our symptoms disappear (with a bit of luck).

    Once on levo when a blood test is due get the earliest possible appointment and fast also (you can drink water). Leave about 24 hours between your last dose of levo and the test and take afterwards. This helps keep TSH at a higher level as food reduces TSH. Always get a print-out of your blood test results with the ranges and post for comments if you have a query.

  • Well said Shaws. My blood is boiling reading Pchi's post. I'm really not surprised that we are the only country (as far as you know ) that treat ill people in such a disgraceful way.

    I have a sister who lives in Italy. She has had to have tests regarding her thyroid recently. The whole profile plus antibodies and scan done with results printed out without her having to ask, (sorry beg)

    They have got away with this behavior for far too long. As the saying goes "There is no tide that does not turn".

    Up the sisterhood (and brotherhood)👍

  • I find your final cheer, "Up the sisterhood!(and brotherhood)" very interesting. Apparently, underactive thyroid affects women more than men. I'm a male sufferer and was shocked by the reaction of (all male)GPs trying to get me to admit to depression and pull myself together.

    It's not perhaps my place to suggest this but could there be a hint of sexism in some GPs' reaction?

  • ....Pull yourself together...

    Typical attitude of the s...heads.

    What did they want you to do? Cry, Probably. Then they will be able to give you anti-depressives. That's their job done. Bye, Next please...

    If it was any other job they would get their P45 pronto. That's a piece of paper to say your sacked.

    Give me strength Lord.

  • Hi Shaws where would I get/buy my own Levo from? I do have a brother who is a nurse in A&E so could see if he can get me some but dont want to get him in any trouble. Thanks

  • Don't know where's get extra Levo from - mine was prescribed by my doctor and if I were you I would try and get my doctor to increase my dose when you need it.

    When I was being treated I kept quite detailed notes on how I was feeling and used them along with my records of my blood tests to prove my point when I needed the Levo part of my treatment increased,.

    I definitely wouldn't ask your brother to try and get it for you, I'm sure that would get him into big trouble.

  • Welcome to the forum, Pchi.

    TSH 6.69 is NOT normal. TSH between 5 and 10 means you are subclinically hypothyroid. TSH is high because FT4 and FT3 are low, and cholesterol is usually high when thyroid hormones are low.

    25mcg isn't likely to be very helpful but GPs tend to start patients >50 on low doses. You should have a follow up blood test in 6-8 weeks and dose will probably be increased then. Arrange the blood draw early in the morning and fast (water only) as TSH is highest early and drops post-prandially. Take Levothyroxine after the blood draw.

    For maximum absorption take Levothyroxine with water one hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from iron, calcium, vitamin D and oestrogen.

    When you are optimally medicated with TSH around 1.0 cholesterol will probably fall. In the meantime, all that private FT3 testing is going to tell you is that T3 is low.


    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 Pchi, I too have had similar problems to you. I couldn't get anywhere with my old GP & was referred to a very well known hospital in Birmingham, but the Endos there were useless & now with new GP not much better but after joining this forum & constantly reading I have taken control of my own thyroid disorder! My TSH was similar to yours & I was on 25mcg to start but have increased gradually & am now up to 100 mcg. I feel a lot better but it's taken time & perseverance with some side effects. I do however self medicate as I'm used to the symptoms now (much to the horror of my GP!) because I just couldn't stand feeling ill any longer. Levothyroxine isn't all bad news & you can feel really well when properly medicated. My daughter is on 100 mcg & is really well, my cousin is on 125mcg & also fine. At the end of the day, it's what works for you but I hope this helps.

    Lou x

  • Oh my goodness thank you all soooo much. I am actually crying to get your replies and that there are so many of you out there who know what this is like and willing to offer guidance. I have felt some days like I am mad or just a hypochondriac even though some days felt so weak and in pain I could hardly stand up or get out of bed with extreme exhaustion. I have even started to become electro sensitive as my body is unable to cope. I will get thyroxine prescription done tomorrow and start it and book

    blood test as you have advised. Just hope Doctor will increase my dose. The lab ranges I were given only stated readings for T4 TSH cortisol(513nmol/L glucose and Triglyceries 1.63mmol/L plus Cholesterol 8.6mmol/L the rest of readings just say 'normal'(Ferritin/calcium/HbA1c etc)

    Would NDT help me though and is it worth pursuing that?

    Thank you all again. i am so grateful x

  • I urge you to go ahead with this. The NHS thinks being bedridden is somehow normal. NDT is USUALLY better for most people although some do okay with levo (T4). Just ask people here in another post to send you private messages of where they order their NDT. I used Armour and Erfa for years and there are others. I'm in the U.S. so can't help you.

    You can go ahead with Levo but you have to follow a process of raising the dose. There is a feedback loop which tries to balance the hormones so many things change as you increase the hormone. If you find that your GP or Endo will keep you at a low level for too long, do not go along with that. Be prepared to ignore them if necessary but getting blood testing might be helpful but not totally necessary as your body will let you know.

  • Your TSH is well over borderline its postively hypothyroid

    You need to start taking that 25mcg of levothyroxine fast

    But you need to ask your GP to test




    Vit d3

    Because they must all be halfway in their ranges or your body cannot utilise the levothyroxine

    Its horrendous to read stories like yours and to hear about such disgusting endos

  • When you ask for any test results in future, please specify at the time that you want the actual values for your tests and also the reference ranges for everything. Any test result that just says "normal" isn't worth the ink that was used to produce it.

    If you have any numbers with no reference ranges, then do an internet search for the pathology lab at your local hospital (or wherever the lab was that did the actual test and produced the results). You may find (no guarantees) that the pathology lab publishes their reference ranges on the internet. Since reference ranges differ from lab to lab you need to find the ranges that apply to your particular results. You can't pick just any old set of reference ranges.

  • Thank you all for your help. I am now planning to go see a 'specialist' even though money is very tight. He comes highly recommended by a friend who I trust and who has been greatly improved by his diagnosis/treatment inc. NDT. He also deals with hormone imbalances. I have banged at the door of the NHS too long and I am tired and fed up with their lack of care. Want to get this sorted asap and feel well again.

    Also just to say I have had a couple of slightly worrying private inboxes from

    ??? warning me this is a scam site. I don't believe you are though. When I replied to the first email and asked them to justify their accusations they deleted the message. The 2nd from a different handle appeared in my personal email and when I went to access it here seemed to have been deleted. I feel I could be putting my neck on the chopping board mentioning this but it was slightly worrying. But is NOT the reason I have decided to go private as you have all been most helpful and encouraging. And I wouldn't hestitate to recommend this site. However is there someone/s out there with a grudge against you?

  • Hello Pchi. You've been given lots of good advice. My TSH never went out of so-called sub-clinical, so I get where you're at.

    Regarding the weird private messages, go to the Pinned Posts (right hand side of screen). You want the one titled "Random Abuse".

  • yes I agree totally all advice was brilliant and I am most grateful... just feel need to get properly assessed now and maybe have other hormones checked too...

    Don't seem to have a pinned posts heading on my screen - just a search bar and write a post. Did a search found a page with them all on but no random abuse title. The ones I got are deleted anyhow. I just wanted to let you know

    many thanks

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